Post Orgasmic Illness Syndrome (P.O.I.S.)

POIS Cause/Treatment Discussions => General Alternative Causes and Treatments of POIS => Topic started by: nanna1 on July 30, 2018, 08:40:00 PM

Title: Women with Post Orgasmic Illness Syndrome
Post by: nanna1 on July 30, 2018, 08:40:00 PM
  I know there are not many women that post on POIScenter or thenakedscientist (https://www.thenakedscientists.com/forum/index.php?topic=14697.0), but I just wanted to welcome any women out there to the POIS community. As a male, I am aware that there is very little literature or research discussing men with POIS. But I sympathize with the fact that there is even less discussion, literature or research for girls and women with POIS. And yet you suffer the same symptoms that male POISers do.

  I think that if we (women and men) with POIS can work together, we could find the cause and cure by drawing from the diversity of our knowledge and experiences and improve the quality of life of many and their families. POIS is a disease that affects us all. But most importantly, if you are a girl or woman who is suffering after orgasms and other sexually related activity, you need to know that you are not alone. Below are a few female POISers who have shared their stories:

girlwind (https://www.thenakedscientists.com/forum/index.php?PHPSESSID=ptq3bd0gu41qvcoq6e09uoddq5&topic=14697.msg175197#msg175197) Little.L. (http://poiscenter.com/forums/index.php?topic=355.msg4319#msg4319) Shaniliyl (http://poiscenter.com/forums/index.php?topic=299.msg5339#msg5339)
mallory (https://www.thenakedscientists.com/forum/index.php?PHPSESSID=ptq3bd0gu41qvcoq6e09uoddq5&topic=14697.msg177763#msg177763) dealande (https://www.thenakedscientists.com/forum/index.php?PHPSESSID=ptq3bd0gu41qvcoq6e09uoddq5&topic=14697.msg210404#msg210404) lovelife28 (https://www.thenakedscientists.com/forum/index.php?PHPSESSID=ptq3bd0gu41qvcoq6e09uoddq5&topic=14697.msg344849#msg344849)
Freya888 (https://www.thenakedscientists.com/forum/index.php?PHPSESSID=ptq3bd0gu41qvcoq6e09uoddq5&topic=14697.msg478191#msg478191) aWife-Tatyana (https://www.thenakedscientists.com/forum/index.php?PHPSESSID=ptq3bd0gu41qvcoq6e09uoddq5&topic=14697.msg449249#msg449249) (and  Tanya (https://www.thenakedscientists.com/forum/index.php?topic=6576.msg590957;topicseen#msg590957)) Giggly (https://www.thenakedscientists.com/forum/index.php?PHPSESSID=ptq3bd0gu41qvcoq6e09uoddq5&topic=14697.msg478002#msg478002)
KarenSedd (https://www.thenakedscientists.com/forum/index.php?PHPSESSID=ptq3bd0gu41qvcoq6e09uoddq5&topic=14697.msg498155#msg498155) thowawaylady (https://www.reddit.com/r/POIS/comments/8yf93o/lady_here_point_me_in_the_right_direction/) IronFeather (https://poiscenter.com/forums/index.php?topic=2755.msg31923#msg31923)
listening-to-silence (https://www.reddit.com/user/listening-to-silence/) Timtim (https://poiscenter.com/forums/index.php?topic=2755.msg32775#msg32775) Heather01111 (https://www.reddit.com/r/POIS/comments/hgknmc/women_with_pois/) (and comments (https://poiscenter.com/forums/index.php?topic=2755.msg35060#msg35060))
sealover12369 (https://www.thenakedscientists.com/forum/index.php?topic=14697.msg552253#msg552253) Mariapol989 (https://www.reddit.com/r/POIS/comments/einzlj/women_and_pois_symptoms/) Mermaid (https://www.thenakedscientists.com/forum/index.php?topic=6576.msg395064;topicseen#msg395064)
ajs (https://www.thenakedscientists.com/forum/index.php?topic=6576.msg416323;topicseen#msg416323) dubaigirl (https://www.thenakedscientists.com/forum/index.php?topic=6576.msg427249#msg427249) takedrugstoletgo (https://poiscenter.com/forums/index.php?topic=3575.0)

Welcome to the POIS community Ladies. We wish you all the best!

Sincerely,
nanna1
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Nas on July 30, 2018, 10:15:06 PM
Hi there ladies,
For better understanding of your symptoms please do us these surveys to see the particularities of your illness: https://docs.google.com/forms/d/e/1FAIpQLSe0BbwBanIHuOMh3S6zGm8o9YJw635PVDP70qVETKHAl8cjNA/viewform?usp=sf_link
Thank you.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on November 11, 2019, 11:38:45 AM
The women who suffer from POIS don't seem to be much engaged with this forum, I mean not at all. They are almost invisible to forum members let alone to scientists and researchers.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: demografx on November 11, 2019, 12:11:42 PM
After meeting (online) a few, plus extensive interactions with one woman who was heavily self-identified as a POISer, I am not convinced females have POIS.

My guess is that POIS has a lot to do with semen. For example, Animus’ dry ejaculation = 10 years of no POIS.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Animus on November 11, 2019, 12:59:20 PM
After meeting (online) a few, plus extensive interactions with one woman who was heavily self-identified as a POISer, I am not convinced females have POIS.

My guess is that POIS has a lot to do with semen. For example, Animus’ dry ejaculation = 10 years of no POIS.

I haven't come across a woman with the same group of symptoms which we all identify as POIS.  We KNOW when it's POIS, even though we have a range of symptoms.   Women may/ or may not have sexual related problems, but I also agree with Demo that it's not POIS.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Nas on November 11, 2019, 01:09:39 PM
And what exactly defines POIS? I don't get any physical symptoms, does that mean that I don't have POIS?

i.e. The illness ( from reports ) seems way too inconsistent in some areas.

For example women who suffer from consistent postcoital dysphoria, would they be identified as POIS sufferers as well?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Nas on November 11, 2019, 01:16:10 PM
After meeting (online) a few, plus extensive interactions with one woman who was heavily self-identified as a POISer, I am not convinced females have POIS.

My guess is that POIS has a lot to do with semen. For example, Animus’ dry ejaculation = 10 years of no POIS.
Not just semen. Women do not go through a refractory period after orgasm.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: demografx on November 11, 2019, 01:25:07 PM
Thank you, refractory period dysfunction was my very first POIS hypothesis!
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on November 11, 2019, 01:27:28 PM
It's difficult to judge when nobody comes forward, that's my point. Women are aroused, have orgasms and can expel fluids during or as a result of sexual activity as well.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: demografx on November 11, 2019, 01:35:23 PM
It's difficult to judge when nobody comes forward...
According to nanna1’s OP, quite a few women have come forward (no pun intended).
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: demografx on November 11, 2019, 01:41:00 PM
I don't get any physical symptoms, does that mean that I don't have POIS?
I don’t know of any POIS definition that rules out sufferers such as yourself, with primarily cognitive & emotional symptoms.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: demografx on November 11, 2019, 01:52:08 PM
Another conjecture of mine is that if women suffered from POIS, at least one woman would still be around (forum-active) after 12 years of this heavily-advertised top-rated forum of ours of 850+ members.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Hopeoneday on November 11, 2019, 03:24:05 PM
On reddit i found fwew woman with pois, and
some of them hawe a complitly the same sympthome as
we.
Vitamin D  did helping 5 years,
then stopped working, for one of them
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Animus on November 11, 2019, 05:08:25 PM
Thank you, refractory period dysfunction was my very first POIS hypothesis!

Yes. Refactory Period. is a Key Term.
Thank you guys for identifying it.
I think the refactory period is typically 2 -3 days for a healthy man.
I think that's the time in which it takes to replenish the fluids in the semen. Which includes fluids from the seminal vesicles, testicles, and prostate, and cowpers gland.
Some where I read it takes 7 days for a man to fully regenerate sperm. they guys with the tails... haha
Which is also a number which many POISers are familiar with?... I think.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Animus on November 11, 2019, 05:11:55 PM
I don't get any physical symptoms, does that mean that I don't have POIS?
I don’t know of any POIS definition that rules out sufferers such as yourself, with primarily cognitive & emotional symptoms.

yes, that's correct. mental symptoms are definitely included. Physical and mental and emotional symptoms.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Nas on November 11, 2019, 06:12:16 PM
Thank you, refractory period dysfunction was my very first POIS hypothesis!

Yes. Refactory Period. is a Key Term.
Thank you guys for identifying it.
I think the refactory period is typically 2 -3 days for a healthy man.
I think that's the time in which it takes to replenish the fluids in the semen. Which includes fluids from the seminal vesicles, testicles, and prostate, and cowpers gland.
Some where I read it takes 7 days for a man to fully regenerate sperm. they guys with the tails... haha
Which is also a number which many POISers are familiar with?... I think.
Yes 7 days is the usual "healing time" although I find certain personality traits like socializing keeps improving week after a week. Pure OCD and Depression also keep improving beyond a week.
An interesting theory I had is that the replenishment of semen during these days increases androgen production leading to opening up of libido.
Perhaps an issue with androgen receptors is possible?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: demografx on November 11, 2019, 10:36:37 PM
My very first theory many years ago was very simple: POISers suffer from slow semen re-generation.

Today, I’m less confident since I’ve watched a dizzying array of very bright POIS thinking here at the forum and by outside researchers. I have also developed more suspects: physical genital trauma, and excessive sexual activity. (The latter seems to have the very least agreement with other forum members/admins here :) )

Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: demografx on November 11, 2019, 10:40:27 PM
I don't get any physical symptoms, does that mean that I don't have POIS?
I don’t know of any POIS definition that rules out sufferers such as yourself, with primarily cognitive & emotional symptoms.

yes, that's correct. mental symptoms are definitely included. Physical and mental and emotional symptoms.
Animus, I would add, in Nas’ case as an example, that all 3 symptom types need not be present to be a POISer.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: uhtred sonof on November 15, 2019, 07:11:04 AM
My gf had orgasmic headaches (her doctor called it orgasm stress) in our teen years. Sometimes I wonder if I "caught" POIS from her.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on November 15, 2019, 08:45:35 AM
My gf had orgasmic headaches (her doctor called it orgasm stress) in our teen years. Sometimes I wonder if I "caught" POIS from her.
So you are thinking about the transfer of a pathogen? Shaniliyl had the same thoughts, see link page 1.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: swell on November 18, 2019, 07:00:51 PM
I put my thoughts on another thread, Muon. (https://poiscenter.com/forums/index.php?topic=2512.0).  I really think, being concerned about a pathogen, while it could be true (and its our current way of finding diseases and research), in my opinion is a useless win-loose approach, where you win one battle and loose another later on.  Our body is itself a pathogen, there are infinite pathogens that live inside us (benefiting us and harming us), and our body deals with them (I believe much better than we would).  I think a "win-win" approach (from process engineering profession - that is mine) is to find the single significant and weakest link in the end-to-end value chain.  From this forum, and myself as case study, I gathered and now believe it is the impaired growth of our epithelial cells, such that our tissue has permeability which exposes us (un-necessarily) to these pathogens (that pathogen could be a lectin, shingles, candida or whatever hiding in semen).  How many pathogens are researchers going to go after, it could be a very counter-productive approach from a patient perspective.  I think, the best approach would be to increase resilience, thickness, the quality of our epithelial tissue, at least bring it to a reference/acceptable level where pathogens (good or bad) are no longer an issue.

I do believe now (as much as it would hurt some folks who are still suffering from POIS) that POIS inherently is good.  POIS is a protection mechanism where our body diverts essential resources away from brain (resulting in brain fog), essential resources away from tissue -> resulting in muscle weakness, skin symptoms, speech dysarthia, etc.  Our body wouldn't have to 'ration' resources this way for repair/replenishment if the weakest link - epithelial tissue was thicker and more resilient.  A curing of this weakest link, I think is big, much bigger than POIS, but I think its very rewarding (even though it would be threatening to some interest groups).  It would not only cure POIS, but give us a great overall health - longevity that we POIS'ers might be built for.

I think the various growth factors (too many by now :)) I have used, have essentially cured (or for better word 'managed') my POIS 100%, some better than the others, and some with effects that I dont like, but I am a perfectionist and I do believe the perfect solution is there, it just needs to be compiled and polished.  For e.g. Testosterone (a growth factor) while manages POIS not perfectly, maybe like 75%? (Dem would be more appropriate to comment on that) which is good as it aids our body in regenerating and growth during the 7 day POIS curfew, how?  by activating mTOR metabolic pathways and more.  While that is good for our brain fog and skin symptoms, but holistically, that is questionable (to me).  Same goes for Thyroid T3, which I have tried and tested, and I would say it works close to 100%.  nanna1's stack is also growth factors and actually works if you continue it for a longer period at higher dosages, but again I have reservations.  nanna1 stacks single compound TMG (like Creatine) taken for extended period is powerful, but it also sends your muscle cells in a fast-drive hypertophy mode.  I believe these growth-factors are questionable for longevity.  We POIS'ers I think have a gifted DNA repair/archival process, and by un-necessarily keeping mTOR channels active long-enough is not conducive for longevity.  I actually appreciate Quantum's stack (its super healthy without all the growth on you everywhere) but I have not had any success with it. 

I have just exploring VEGF if that can improve our epithelial tissue ONLY without all that systemic all-across growth (that comes with other growth factors).  nanna1, Muon, and all you rest POIS'ers (or former POIS'ers), any thoughts?   


My gf had orgasmic headaches (her doctor called it orgasm stress) in our teen years. Sometimes I wonder if I "caught" POIS from her.
So you are thinking about the transfer of a pathogen? Shaniliyl had the same thoughts, see link page 1.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: IronFeather on November 26, 2019, 07:39:10 AM
It's difficult to judge when nobody comes forward, that's my point. Women are aroused, have orgasms and can expel fluids during or as a result of sexual activity as well.

Hello, everyone. This is my first post here, so... sorry if I'm breaking any rules, I hope not, but I'm not sure how this forum works yet. I came across this thread when looking for information about POIS research on women, as I'm a woman with very heavy POIS symptoms myself. I believe there must be many female POIS sufferers out there, but it's such an embarrassing topic to talk about that I can understand why many of us never speak about it.

In my case, no doctor has diagnosed me with POIS, as they mostly haven't even heard about it, and some of them tell me it must all be psychological when I describe my symptoms. But I believe it has to be POIS... Following O or even arousal, in less than 24 hours I get a fever, lose my appetite, my throat hurts so much I can barely swallow, I feel irritated and sometimes downright angry for no apparent reason, my skin gets very warm but I'm shivering and with a fast pulse... This is ruining my life, and the symptoms have been consistently getting worse and worse every time, to the point that I fear dying during one of these "POIS attacks". And lately my neck gets so stiff and hurts so much that I can't even takes notes properly in class. It's a nightmare.

I just wanted to put this out there... I'm going to read as many old posts here as I can, in hope of finding something that could help me, but there seems to be a lot of information, any suggestions on where to get started?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Nas on November 26, 2019, 07:48:13 AM
Hey IronFether,
Glad you came out forward.
What about your libido after orgasm do you feel that you shut down and can't perform anymore or can you continue with no problem?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on November 26, 2019, 07:58:38 AM
Welcome to the forum IronFeather.

How long do these symptoms last? Do they all fully disappear or is there still a low level of symptom intenstiy present after 'recovery'?

You can start by reading Waldinger's 2016 paper which you can find inside the POIS paper archive thread.

https://www.reddit.com/r/POIS/comments/dwblg5/helpful_links/

You can show this paper to your doctor especially this section about POIS in females: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5001999/#__sec11title
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: IronFeather on November 26, 2019, 08:29:01 AM
Thank you, Nas and Muon!

I'm not sure how to quote parts of two posts at the same time, so I'll reply without the quotes that you all are using and hope I'll get the hang of this editor soon. About what Nas asked me, my libido is always insanely high, as embarrassing as it is to admit it, and it doesn't decrease much after orgasm. In fact, even when I try to refrain from any type of sexual activity as much as I can, sometimes I miserably fail, and when that happens, sometimes I've thought "oh well, I know I'm going to get sick anyway already, so I might as well keep going a few more times". Very bad idea, that reasoning made me get horrible symptoms that left me postrated in bed for an entire month once, unable to even get up without throwing up, and I lost 20% of my body weight on top of being thin already. That's the only time in my life that I've missed class, and I've been really sick sometimes.

Muon, when I first developed POIS (as a teenager, around one year after getting my period for the first time), it only consisted of moderate fever during one day, exactly 24 hours. It's been getting consistently worse ever since, and that'w what scares me the most. During my teenage years it slowly graduated to fever during two days, three days, then a week... And once I started college I started getting other symptoms along with it, first swollen lymph nodes, then severe throat pain to the point that swallowing anything literally feels like I'm swallowing a knife, and now such bad neck pain that a few weeks ago I seriously thought I'd torn some ligament in my neck lifting weights the day before until I connected the dots and realized it wasn't that (it resolved in two days). Now my symptoms never last less that a week, and it's usually two.

After recovery, I usually still feel that my skin is warmer than usual, and I get mood swings that aren't typical of me at all. I've even snapped at people or screamed at friends before I realized what was happening, but apart from that it's pretty much all gone until the next time.

Thanks a lot for the info! I'll read those papers!
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on November 26, 2019, 08:48:13 AM
Sounds like POIS to me. Swollen lymph nodes could mean T-cell proliferation. Yes, doing it twice in a row makes it so much worse like for most people here on this forum.

How do you feel when you menstruate? Do you get symptoms from this?

And do your symptoms get worse when you expell more liquid down below?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: IronFeather on November 26, 2019, 01:52:52 PM
How do you feel when you menstruate? Do you get symptoms from this?

And do your symptoms get worse when you expell more liquid down below?

I think I get no symptoms from menstruation at all. Sometimes I've had my period and POIS symptoms at the same time, but just because of a timing coincidence, and it doesn't make the symotoms better or worse as far as I can tell. Right now I've been in complete sexual abstinence for the past month, I'm on my period and I feel no symptoms at all. Sometimes my skin feels slightly warmer than usual, but that might be because even arousal causes mild symptoms in my case, and I can't control that as much as I'd like. I've read on this forum that this happens to some of you too.

Hmm, I don't think I expell any liquid, apart from normal natural lubrication (which I produce a lot of). Are you thinking of a possible allergy like the semen allergy hypothesis in the case of men?

I've had blood tests done multiple times during my worst fever episodes, and everything comes back normal except for very low levels of iron (I usually have normal or even high iron and hemoglobin levels), and through-the-roof amounts of C-reactive protein. This led doctors to think I could have mononucleosis or some kind of bacterial infection, but all specific tests came back negative. They put me on antibiotics anyway, and that solved most symptoms almost immediately and made me able to get out of bed and finally get better during the worst episode I've ever had. That's why I've always thought it must be some kind of infection by some pathogen, even when I used to believe an autoinmune reaction must be the cause. Now I don't even know what to believe or what to do.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on November 27, 2019, 10:07:17 AM
Hi IronFeather,

1) You are talking about your teenage years, what's your age?

2) Symptoms started 1 year after your first period, was this the first time you masturbated?

3) Do you produce more natural lubricant when you orgasm?

4) How much time, roughly speaking, is there between the moment you start masturbating and reaching orgasm? There are people here with (lifelong) premature ejaculation.

5) Did you experience other symptoms before 'POIS' symptoms made their appearance?

6) What was the antibiotic you were using?

7) Did they measure your vitamin D, lactoferrin, interferons, NK, T and B cells?

8 ) If you feel like sharing your lab results you can do so here: https://poiscenter.com/forums/index.php?topic=2684.0

Iron is essential for bacterial growth. It sounds to me like arousal and orgasm alter immune parameter level(s) which are required to suppress bacterial growth. So orgasm might be a window of opportunity for the bacteria to grow. Once the rate of growth increases, they will take up more iron and you will see a drop in iron. Out of POIS the bacterial growth is decreased and bacterial iron uptake will be decreased and iron levels return to normal.

Since some of the bacterial suppressors are altered the body might switch to other mechanisms to reverse this behaviour like inducing fever. Once you are out of POIS the parameters return to a state in which they can suppress bacterial growth again. But everytime you orgasm the microbes gain more ground and the response gets worse over a longer period of time because their population becomes bigger. Lactoferrin might also play a role in this. I think your immune system might actually be in an abnormal state outside POIS and orgasm/arousal shifts this state, the shifting may not be preferable.

There is also something else that might induce fever: https://poiscenter.com/forums/index.php?topic=2695.msg31290#msg31290
The vagus nerve might activate mast cells leading to the release of mitochondrial DNA which the body misconstrues as innate pathogen and release antibodies against this DNA.

I personally had an iron defiency when I was a kid long before I became sexual active, including food sensitivities as well.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on November 30, 2019, 07:30:33 AM
@ IronFeather:

You may search literature which cytokines are capable of inducing fever and test these during fever mode. I've also sent you a private message regarding POIS researchers.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on December 01, 2019, 08:34:26 AM
I have just exploring VEGF if that can improve our epithelial tissue ONLY without all that systemic all-across growth (that comes with other growth factors).  nanna1, Muon, and all you rest POIS'ers (or former POIS'ers), any thoughts?

I haven't looked into growth factors (other than VEGF) and the mTOR pathway. You can test VEGF at commercial labs, perhaps it's an idea to check that one out since no poiser has done this yet.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on December 02, 2019, 02:36:07 PM
The fever could be caused by an abnormal response within the HPA-axis.

https://en.wikipedia.org/wiki/Fever#Pathophysiology
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: IronFeather on December 08, 2019, 04:43:31 PM
Hi IronFeather,

1) You are talking about your teenage years, what's your age?

2) Symptoms started 1 year after your first period, was this the first time you masturbated?

3) Do you produce more natural lubricant when you orgasm?

4) How much time, roughly speaking, is there between the moment you start masturbating and reaching orgasm? There are people here with (lifelong) premature ejaculation.

5) Did you experience other symptoms before 'POIS' symptoms made their appearance?

6) What was the antibiotic you were using?

7) Did they measure your vitamin D, lactoferrin, interferons, NK, T and B cells?

8.) If you feel like sharing your lab results you can do so here: https://poiscenter.com/forums/index.php?topic=2684.0

Hi Muon, sorry that it took me so long to reply to this.

1) I'm 23 now, but I'll be 24 at the end of December. I've had POIS symptoms ever since I was around 12 or 13 years old, I can't remember exactly but I know it was around that age.

2) No, I was very young when I first masturbated, less than 3 years old. I used to do it very often as a kid, probably daily, unless I was sick. I used to be sick pretty often too, which I later found out was caused by a food intolerance (a very bad one, almost an allergy) to soy.

3) I can't be 100% sure, but I think I don't. Since arousal doesn't seem to cause POIS symptoms for me (yet, at least), I've been edging a lot lately but avoiding orgasm altogether, and I haven't noticed any decrease in the amount of lubricant that I produce.

4) If I were a man, I'd suffer from premature ejaculation for sure. I can orgasm in one minute easily, and it never takes me longer than two unless I'm playing/waiting on purpose.

5) Hmm, I don't think so. The only health problems I've had in my life are my soy allergy and an extreme sensitivity to cold (I never catch a cold or the flu from somebody else, but going outside in winter without four or five layers of clothes mean I'm going to get sick, 100% guaranteed). I also have very bad acne, I've had it since my first period, and I believe it's POIS-related because it gets noticeably worse during an episode.

6) I was prescribed cefixime. I took it for five days before it caused me to stop absorbing food adequately, I was going to the bathroom three-four times a day, so I had to stop taking it. But apparently it was enough, the symptoms had already lowered in intensity and I slowly improved by myself until the episode was over.

7) They did measure my vitamin D, which is always very low, below the critical levels. I'm taking vitamin D in drops daily but I don't seem to improve... I'm not sure about the other parameters, I'm going to see if I can find the results and check!

8.) Yes, of course, I'll post them as soon as I find them. They're in Spanish but medical terms tend to be very similar anyway, and if I can find the time I'll translate them too.

The vagus nerve idea seems interesting to me, because before I had even heard about POIS, I realized that one of my symptoms was a strange feeling of something being wrong around the center of my abdomen (the middle of the diaphragm, more or less), and if pressed that area my other symptoms got much worse. I told a doctor about this and, after some thinking, he told me that the only thing that occurred to him was something being wrong with my vagus nerve. And the only time that I got full POIS symptoms completely unrelated to masturbation, it happened after laying in bed face down reading a book, pressing that exact same spot against the bed. But what could possibly be wrong with the vagus nerve?


Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: demografx on December 08, 2019, 10:43:29 PM

The vagus nerve idea seems interesting to me, because before I had even heard about POIS, I realized that one of my symptoms was a strange feeling of something being wrong around the center of my abdomen (the middle of the diaphragm, more or less), and if pressed that area my other symptoms got much worse. I told a doctor about this and, after some thinking, he told me that the only thing that occurred to him was something being wrong with my vagus nerve. And the only time that I got full POIS symptoms completely unrelated to masturbation, it happened after laying in bed face down reading a book, pressing that exact same spot against the bed. But what could possibly be wrong with the vagus nerve?


IronFeather, this forum committed heavily at one time to researching vagal dystonia as a possible POIS culprit. Some of us continue experimenting with tVNS devices as a possible POIS treatment:
https://poiscenter.com/forums/index.php?topic=2969.0
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Hopeoneday on December 09, 2019, 12:55:48 PM


5) Hmm, I don't think so. The only health problems I've had in my life are my soy allergy and an extreme sensitivity to cold (I never catch a cold or the flu from somebody else, but going outside in winter without four or five layers of clothes mean I'm going to get sick, 100% guaranteed). I also have very bad acne, I've had it since my first period, and I believe it's POIS-related because it gets noticeably worse during an episode.


The vagus nerve idea seems interesting to me, because before I had even heard about POIS, I realized that one of my symptoms was a strange feeling of something being wrong around the center of my abdomen (the middle of the diaphragm, more or less), and if pressed that area my other symptoms got much worse. I told a doctor about this and, after some thinking, he told me that the only thing that occurred to him was something being wrong with my vagus nerve. And the only time that I got full POIS symptoms completely unrelated to masturbation, it happened after laying in bed face down reading a book, pressing that exact same spot against the bed. But what could possibly be wrong with the vagus nerve?
Hi IronFeather- 5)-match with me complitly the same(severe acne in that age, cold intoleraces,colds after that...
Vagus nerve could be infected (by "my theory"), or toxic , again by "my theory" and linked to gut and imunity.
I will write about this soon.

Sometimes only air small of bloat on that erea, induce me to hawe heart palpilations, in pois badly.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on December 13, 2019, 06:46:05 PM
9) Did you do a test for soy allergy to determine it's a true allergy? And was this soy 'allergy' present before your first POIS symptoms emerged?

10) Do you have any intravaginal sensitivities?

11) Have you ever tried NSAIDs? https://en.wikipedia.org/wiki/Nonsteroidal_anti-inflammatory_drug

12) Do the sickness symptoms from cold exposure have any overlap with POIS symptoms?

13) Do you have any problems with heat, like hot weather?

14) Do you experience any autonomic related symptoms/dysfunction (see picture below)?

15) Do you have any relatives with health problems? If so what kind of health problems?

16) Are you susceptible to stress? And once you are stressed is it difficult to reverse this?

(https://upload.wikimedia.org/wikipedia/commons/c/c5/The_Autonomic_Nervous_System.jpg)

https://en.wikipedia.org/wiki/Dysautonomia
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on December 25, 2019, 11:51:22 AM
About what Nas asked me, my libido is always insanely high, as embarrassing as it is to admit it, and it doesn't decrease much after orgasm.

''Finally, there is the mystery of the presence of mast cells in neuroendocrine organs, such as the pineal, hypothalamus, pituitary, thyroid and the uterus [3], where the pathophysiologic function of the mast cells remains unknown. These findings may possibly explain our observation that many females with MCMD report increased libido and orgasms.''

Recent advances in our understanding of mast cell activation - or should it be mast cell mediator disorders? (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7003574/)

I wonder if her fever could be explained by mast cell activation in the hypothalamus.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: IronFeather on January 03, 2020, 01:23:59 PM
9) Did you do a test for soy allergy to determine it's a true allergy? And was this soy 'allergy' present before your first POIS symptoms emerged?

10) Do you have any intravaginal sensitivities?

11) Have you ever tried NSAIDs? https://en.wikipedia.org/wiki/Nonsteroidal_anti-inflammatory_drug

12) Do the sickness symptoms from cold exposure have any overlap with POIS symptoms?

13) Do you have any problems with heat, like hot weather?

14) Do you experience any autonomic related symptoms/dysfunction (see picture below)?

15) Do you have any relatives with health problems? If so what kind of health problems?

16) Are you susceptible to stress? And once you are stressed is it difficult to reverse this?

I'm sorry that I'm taking so long to reply, I'm about to start college final exams and it's taking a toll on my free time, that was almost non-existent anyway. I'll try to come back here more often from now on.

9) I haven't done a soy allergy test, so I can't be sure if it's a true allergy or not, but I believe it isn't. I have been eating soy consistently since I was a kid, because a lot of foods that I love have soy as an ingredient or even the main ingredient (tamari sauce, miso, sushi), and never had any intense reactions except for stomach problems, and it took me years to realize that soy was the cause. It got worse when (around 10 years old) I incorporated new foods with soy into my diet and my digestive system couldn't take it anymore: I spent 4 months with colitis and lost half of my weight until thankfully my mother deduced that soy was the culprit. So I believe that, if it was a true allergy, I'd have had a more intense reaction. And yes, I've never tolerated soy well, and I've had that problem for as long as I can remember.

10) Not at all, at least not that I know.

11) No, I haven't, I try to avoid taking medications as much as possible. The only medications I've taken in my life are paracetamol and a couple of antibiotics, always because of the flu or very bad POIS episodes when I needed to manage the symptoms.

12) No, not at all. The only effect that cold has on me is that, well, I get a cold or the flu pretty easily, especially if my feet get cold. Now that my POIS symptoms are getting worse, I also get a very sore throat with it, but it's a completely different kind of sore compared to when I'm sick from a cold. It doesn't feel like an infection, it just hurts, if that makes sense.

13) Not at all, I love hot weather.

14) That's an interesting question. I've definitely had stomach problems related to POIS, stomachaches and gas that can't be explained by any change in my diet and that disappear when POIS symptoms go away. And also an elevated heart rate, but maybe that's because of the fever?

15) My two grandmothers died from breast cancer, and one of my grandfathers died of prostate cancer, but apart from that, the only health problems I can think of in my family are the endless digestive problems of my mother. She's been diagnosed with irritable bowel syndrome and lactose intolerance, but her troubles only appeared after the emotional turmoil of her relationship with my physically abusive father, so that might explain her issues.

16) No, not at all. I live a very stressful life as a student, always trying to get perfect grades and studying two degrees at the same time (I'm an extreme perfectionist), and it hasn't given me any problems so far, I'm used to stress and have always worked well under pressure.

If you have any other questions, Muon, feel free to ask whatever, I'll try to reply as soon as possible! :)
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on January 13, 2020, 12:41:50 PM
16) No, not at all. I live a very stressful life as a student, always trying to get perfect grades and studying two degrees at the same time (I'm an extreme perfectionist), and it hasn't given me any problems so far, I'm used to stress and have always worked well under pressure.

You may be completely wrong about your statement highlighted in bold.

Fever is also a symptom of colitis. It may be possible that you are triggering colitis by sexual activity. Mucosa is dense in mast cells. If you are triggering mast cells it could lead to inflamed mucosa, in your case colitis. I'm not sure what part of the GI tract absorbs vit D, I wonder whether the colonic inflammation inhibits Vit D absorption. Iron deficiency could have made your Vit D low: https://vitamindwiki.com/Iron+deficiency+is+a+cause+of+Vitamin+D+deficiency

My two cents: There is probably some interaction between: Mast cells, mucosa, colitis, sexual activity, iron, vitamin D, stress. I bet the sore throat is probably mucosal mast cell activation as well. Your first intestinal mucosal mast cell trigger was soy, the second trigger later in life might be sexual related, which could synergize with stress.

Often seen, rarely recognized: mast cell activation disease - a guide to diagnosis and therapeutic options (https://sci-hub.se/https://www.tandfonline.com/doi/abs/10.3109/07853890.2016.1161231)

Table 1:  Cold intolerance,  Mood disturbances (e.g., anger, depression (13%)), inflammatory/irritable bowel syndrome (colitis=IBD), selective vitamin and/or other micronutrient deficiencies, weight change, increased susceptibility to infection, Soy: Types I, II, III, and IV hypersensitivity reactions (e.g., allergy, delayed-type hypersensitivity, etc.).
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Timtim on January 21, 2020, 05:52:54 AM
Hi everyone. I am a female poiser.
I am 27 and I had the symptoms since I was 10 or something.
I used to overmasturbate. And I think my pois is because of excessive masturbation
 I started masturbating at the age of 10 or so I guess, however this habit was not an ongoing one. I mean it was on and off. at the age of 19 I stopped masturbating and having sex and I did not have NE and that age. After 1 year of not having orgasm my symptoms have been reduced, but did not disappear. My face used to get very ugly and my stress level was super high. Now I still get ugly after orgasm but not as much as it used to get, and I still have all symptoms but in a lighter level compared to the past. But it is still VERY annoying. I decided to stop having orgasm for a couple of years but that seems impossible because of NEs. Every 6 day one NE!
I am sure my pois is because of over masturbation
My question is if any of you has the same problem? Did you over masturbate?
Do you think excessive masturbation or masturbating at early age (before puberty) caused your pois, too?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: demografx on January 21, 2020, 07:52:12 AM
Timtim, I do think that over-engagement is a possible cause, but I also know that many people here disagree.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Clues on January 21, 2020, 07:53:20 AM
Hi Timtim. :) Respectfully, even if there were a correlation between over-masturbation and POIS, there may not be a causal relationship. Also, to even define over-masturbation you'd have to have some solid statistics on how much people masturbate. Not saying you're definitely wrong, just saying I'd be careful not to assume you caused it yourself and potentially suffer guilt on top of everything else. :)

My personal guess at how I got POIS is over-prescription of antibiotics (like Tetracycline). Not scientific, just my layman's guess based on timing and other forum users' experiences. I'm male btw.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Timtim on January 21, 2020, 01:29:32 PM
Hi Timtim. :) Respectfully, even if there were a correlation between over-masturbation and POIS, there may not be a causal relationship. Also, to even define over-masturbation you'd have to have some solid statistics on how much people masturbate. Not saying you're definitely wrong, just saying I'd be careful not to assume you caused it yourself and potentially suffer guilt on top of everything else. :)

My personal guess at how I got POIS is over-prescription of antibiotics (like Tetracycline). Not scientific, just my layman's guess based on timing and other forum users' experiences. I'm male btw.
That is interesting. When I was a child I was prescribed 20 days of penicillin injection, is it considered over-prescription?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Clues on January 22, 2020, 03:39:45 AM
Timtim, I'm not sure, depends on what it was prescribed for I guess. Sounds like a lot though. These days there is increasing interest in the link between the human microbiome and diseases/conditions that were thought to be unrelated before. Good primer on it here: https://www.theguardian.com/news/2018/mar/26/the-human-microbiome-why-our-microbes-could-be-key-to-our-health (https://www.theguardian.com/news/2018/mar/26/the-human-microbiome-why-our-microbes-could-be-key-to-our-health)
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on January 22, 2020, 11:28:51 AM
...my stress level was super high.
Stress again...

You talk about excessive masturbation or overmasturbating. This doesn't tell me anything if you don't mention the frequency.

What's your educational background if I may ask?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: hurray on January 22, 2020, 04:59:39 PM
...my stress level was super high.
Stress again...

You talk about excessive masturbation or overmasturbating. This doesn't tell me anything if you don't mention the frequency.

What's your educational background if I may ask?

I'm not sure that these are appropriate questions to be asking a new poster, especially given that she hasn't engaged directly with you.

Many people who come to this forum have only just found out about POIS, and they are seeking reassurance and guidance.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: demografx on January 23, 2020, 12:08:50 AM
...my stress level was super high.
Stress again...

You talk about excessive masturbation or overmasturbating. This doesn't tell me anything if you don't mention the frequency.

What's your educational background if I may ask?

I'm not sure that these are appropriate questions to be asking a new poster, especially given that she hasn't engaged directly with you.

Many people who come to this forum have only just found out about POIS, and they are seeking reassurance and guidance.

Hurray, thanks for your point of view.

I also want to thank you for your many years of contributions here!


Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on January 23, 2020, 09:05:54 AM
I'm not sure that these are appropriate questions to be asking a new poster, especially given that she hasn't engaged directly with you.

Many people who come to this forum have only just found out about POIS, and they are seeking reassurance and guidance.

Fair point. Perhaps I shouldn't have asked them especially to new members.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on January 23, 2020, 01:01:23 PM
9) I haven't done a soy allergy test, so I can't be sure if it's a true allergy or not, but I believe it isn't. I have been eating soy consistently since I was a kid, because a lot of foods that I love have soy as an ingredient or even the main ingredient (tamari sauce, miso, sushi), and never had any intense reactions except for stomach problems, and it took me years to realize that soy was the cause. It got worse when (around 10 years old) I incorporated new foods with soy into my diet and my digestive system couldn't take it anymore: I spent 4 months with colitis and lost half of my weight until thankfully my mother deduced that soy was the culprit. So I believe that, if it was a true allergy, I'd have had a more intense reaction. And yes, I've never tolerated soy well, and I've had that problem for as long as I can remember.

FOOD PROTEIN-INDUCED ENTEROCOLITIS SYNDROME (FPIES) (https://www.aaaai.org/conditions-and-treatments/library/allergy-library/food-protein-induced-enterocolitis-syndrome) ???

https://en.wikipedia.org/wiki/Food_protein-induced_enterocolitis_syndrome
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Timtim on January 29, 2020, 01:23:04 PM
...my stress level was super high.
Stress again...

You talk about excessive masturbation or overmasturbating. This doesn't tell me anything if you don't mention the frequency.

What's your educational background if I may ask?
The frequency was like more than one time in a day. I remember masturbating at the age of 10 but I didn?t do it at the age of 12,13,14 but then I remember doing it at the age of 17,18,19 and I had orgasm I think 2 or 3 times a day. But it was not everyday. Maybe 4 days a week.
And my educational background, I have a B.S. in chemical engineering and I am not from an English Language country, and unfortunately  my English is not very good.
So I hope I understood you well and answered your questions clearly.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on January 31, 2020, 03:33:39 PM
I have a B.S. in chemical engineering...

I'm not surprised:

https://poiscenter.com/forums/index.php?topic=55.0

https://poiscenter.com/forums/index.php?topic=248.0

https://poiscenter.com/forums/index.php?topic=3031.0

https://poiscenter.com/forums/index.php?topic=220.0

https://poiscenter.com/forums/index.php?topic=3140.0

I've asked Ironfeather some questions. If you see a few interesting questions feel free to answer them yourself, but don't feel forced to do so. Perhaps there is some overlap between you and her.

https://poiscenter.com/forums/index.php?topic=2755.msg31943#msg31943
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: certainlypois2 on January 31, 2020, 10:45:22 PM
ironfeather and timtim, how long does it take you guys to recover
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Timtim on February 01, 2020, 04:57:18 AM
ironfeather and timtim, how long does it take you guys to recover
It takes 6 days for me to recover. I usually feel good on the sixth day and my face starts to look good again. But on the 7th day I feel totally better. However, recently I have been taking sertraline and I think it has made my symptoms worse and continuous. It's almost 3 weeks I am taking this pill and my symptoms are more in numbers and more severe and they tend to continue more than a week. 25 mg dose.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Timtim on February 01, 2020, 05:34:53 AM
I have a B.S. in chemical engineering...

I'm not surprised:

https://poiscenter.com/forums/index.php?topic=55.0

https://poiscenter.com/forums/index.php?topic=248.0

https://poiscenter.com/forums/index.php?topic=3031.0

https://poiscenter.com/forums/index.php?topic=220.0

https://poiscenter.com/forums/index.php?topic=3140.0

I've asked Ironfeather some questions. If you see a few interesting questions feel free to answer them yourself, but don't feel forced to do so. Perhaps there is some overlap between you and her.

https://poiscenter.com/forums/index.php?topic=2755.msg31943#msg31943
I have read Ironfeather?s answers and I realized that there is considerable overlap between me and her!
Hi IronFeather,

1) You are talking about your teenage years, what's your age?

2) Symptoms started 1 year after your first period, was this the first time you masturbated?

3) Do you produce more natural lubricant when you orgasm?

4) How much time, roughly speaking, is there between the moment you start masturbating and reaching orgasm? There are people here with (lifelong) premature ejaculation.

5) Did you experience other symptoms before 'POIS' symptoms made their appearance?


7) Did they measure your vitamin D, lactoferrin, interferons, NK, T and B cells?

Here are my answers to these questions:

1) I am 27
2) I am not sure about the  first time I masturbated but as far as I recall I was around 10 and I remember I started to feel pois  at the age of 10 or 12 or something.
3) I don?t think I do. Actually I feel I produce less when I orgasm.
4) It takes a short time. Less than a minute maybe.
5) I don?t think so.
7) My vitamin D level was crucially low. It was 7 ng/mL while the normal was range was 20-70.
I took vit D and now it is 33.6 ng/mL
They did not measure others.
I also have thalassemia minor.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on February 06, 2020, 06:51:10 PM
15) My two grandmothers died from breast cancer, and one of my grandfathers died of prostate cancer, but apart from that, the only health problems I can think of in my family are the endless digestive problems of my mother. She's been diagnosed with irritable bowel syndrome and lactose intolerance, but her troubles only appeared after the emotional turmoil of her relationship with my physically abusive father, so that might explain her issues.

Amazing, take a look at table 4: Characterization of Mast Cell Activation Syndrome (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5341697/)

There are also casualties due to cancer in my family. IBS is associated with mast cell activation disease.

"Chronic inflammation is known to be a risk factor for malignancy. The data in this study suggest the families of MCAS patients bear various cancers at much higher rates than the general population, raising the question of whether MCAS underlies significant portions of the populations with at least some types of cancer. The outcome of cancer treatment has long been recognized to improve when comorbid mastocytosis is recognized and concurrently treated. [38] The data in this study suggest it may behoove oncologists to more commonly consider a comorbidity of MCAS when chronic multisystem inflammation and other symptoms more consistent with MC activation than cancer (e.g., syncope in non-metastatic breast cancer) are present in any given cancer patient."

But I believe it has to be POIS... Following O or even arousal, in less than 24 hours I get a fever, lose my appetite, my throat hurts so much I can barely swallow, I feel irritated and sometimes downright angry for no apparent reason, my skin gets very warm but I'm shivering and with a fast pulse... This is ruining my life, and the symptoms have been consistently getting worse and worse every time, to the point that I fear dying during one of these "POIS attacks". And lately my neck gets so stiff and hurts so much that I can't even takes notes properly in class. It's a nightmare.

Some of your symptoms are shown in table 2 of the previous mentioned link, including fever.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on February 09, 2020, 07:11:55 AM
@ TimTim: Do you have a high libido? And what is your ethnicity? And third, do you have any problems with your stool, like abnormal frequency of toilet visits or abnormal composition?

@ IronFeather: What is your ethnicity?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Investigator on February 10, 2020, 03:47:19 AM
Welcome to the forum, TimTim and IronFeather, it's invaluable to hear female perspectives.

I never knew there was a female analogue of premature ejaculation or that women also have NE's. Time to learn.

I have a self-conflicting view on overmasturbation and POIS. On the one hand, it is clear to me that overmasturbation does not on its own cause POIS, since if that were the case, POIS would be a widespread disease and not a rare one. Really a lot of men overmasturbate, I've never considered myself one of them. In fact,  perhaps I have undermasturbated at times. On the other hand, the one time in my life when I overdid it, that's exactly when my POIS started. I remember that day: once a girl texted me with a clear signal we'll hook up in the evening, I masturbated at least once (maybe twice, this I don't recall) in the early afternoon in order not to do my usual terribly quick performance. Then with her in the evening, I did come quickly the first time, as usual. And I couldn't do it a second time at all, I didn't get aroused despite efforts. The next morning was the first time I felt POIS. 
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on February 10, 2020, 12:34:47 PM
However, recently I have been taking sertraline and I think it has made my symptoms worse and continuous. It's almost 3 weeks I am taking this pill and my symptoms are more in numbers and more severe and they tend to continue more than a week. 25 mg dose.

My 2 cents:

You were getting sensitized to sexual activity. The frequency of masturbation sped up the sensitization process, not causing it. Now you might be in a similar process with sertraline, sensitizing to it. With other words this might bring you in a worse state than before the use of sertraline. You probably need to switch medicine or stop using it (for some medicine you can't just quit all at once but needs to be tapered off over the course of time).

Same thing with IronFeather. She sensitized to some standard changes of parameters in the body as a result of sexual activity. It gets worse over time. Same thing with her soy sensitivity. She was in a sensitization process up to the point of colitis (which is another condition that could be related to mast cell activation disease).
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on February 12, 2020, 09:19:37 AM
16) No, not at all. I live a very stressful life as a student, always trying to get perfect grades and studying two degrees at the same time (I'm an extreme perfectionist), and it hasn't given me any problems so far, I'm used to stress and have always worked well under pressure.

You should not underestimate chronic stress, it can alter your immune function:

''Chronic stress can aggravate allergic conditions. This has been attributed to a T helper 2 (TH2)-predominant response driven by suppression of interleukin 12 by both the autonomic nervous system and the hypothalamic-pituitary-adrenal axis. Stress management in highly susceptible individuals may improve symptoms.''Ref (https://en.wikipedia.org/wiki/Allergy#Stress)
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on February 18, 2020, 11:20:08 AM
PGE2 is a mast cell mediator, see table 3:  Mast Cell Biology at Molecular Level: a Comprehensive Review (https://sci-hub.se/10.1007/s12016-019-08769-2)

Could IronFeather's fever be explained by release of PGE2 by mast cells?

(https://www.researchgate.net/profile/Huub_Van_der_Heide/publication/6690503/figure/fig2/AS:601666709626885@1520459930102/COX-1-and-COX-2-pathways.png)
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on February 22, 2020, 12:57:54 PM
7) They did measure my vitamin D, which is always very low, below the critical levels. I'm taking vitamin D in drops daily but I don't seem to improve... I'm not sure about the other parameters, I'm going to see if I can find the results and check!

7) My vitamin D level was crucially low. It was 7 ng/mL while the normal was range was 20-70.
I took vit D and now it is 33.6 ng/mL

"...vitamine D deficiency by laboratoria criteria is often present in MCAS [192], though often with no clear correlation to clinical effects..."

Presentation, Diagnosis, and Management of Mast Cell Activation Syndrome (https://www.jillcarnahan.com/downloads/MCAS-Afrin.pdf)
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: IronFeather on February 24, 2020, 01:19:36 PM
Same thing with IronFeather. She sensitized to some standard changes of parameters in the body as a result of sexual activity. It gets worse over time. Same thing with her soy sensitivity. She was in a sensitization process up to the point of colitis (which is another condition that could be related to mast cell activation disease).

Maybe you're right. I don't know what to think anymore. I'd never heard about mast cell activation disease, but I've looked up some information recently and it seems a bit exaggerated to me, isn't it an illness that's supposed to cause random reactions to various substances, red rashes on the skin, allergy attacks...? Can a person have MCAD and only display symptoms of a sensitivity to a certain substance, and in the case of poisers, to sexual activity? Isn't it a dangerous disease that would have caused us serious problems by now?

Honestly, I'm worried and scared about how this is going to evolve in time. Back when I was a teenager I could never have imagined the magnitude of the symptoms I'm having now, so who know what is yet to come? Does MCAD pose any risk to the brain? That's what terrifies me the most, my entire life revolves around intellectual activities, am I going to lose it all because of a stupid random disease?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: IronFeather on February 24, 2020, 01:25:38 PM
ironfeather and timtim, how long does it take you guys to recover

For me, it used to take one day to recover when all of this started, but it's been steadily getting worse over time, and now it usually takes me two weeks. But I can speed up the process by doing aerobic exercise and sweating, and after that my symptoms fade in about a day. Anyway, I still feel kind of weird, sick in a diffuse unexplainable way, for as long as one month.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: IronFeather on February 24, 2020, 01:37:46 PM
@ IronFeather: What is your ethnicity?

Hmm, well, I'm going to make a fool of myself with my reply, but I'd never actually given the concept of ethnicity much thought, so I'm not sure how to answer this! Because ethnicity seems to be different from race. So... My mother is from the Canary Islands and all her ancestors are, so chances are I have some African genes in me, and my father is from southern Spain. I don't know much about his family though, but probably all of them are from the same place. So, my race would be white, and my ethnicity, uhm, southern European?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: demografx on February 24, 2020, 04:23:11 PM

@ IronFeather: What is your ethnicity?
I’m not sure this is an appropriate question for our public forum.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on February 24, 2020, 04:33:58 PM
@ IronFeather: What is your ethnicity?
I’m not sure this is an appropriate question for our public forum.

"Demographically, white females dominated."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5341697/
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: demografx on February 24, 2020, 04:43:18 PM
The study does not single out any specific, individual participant. It is a statistical *summary* of ethnicity. Individual data remains private.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: hurray on February 24, 2020, 05:28:20 PM

"Demographically, white females dominated."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5341697/

That's unfortunate. It is a bit of a blow to the MCAS/POIS theory.

If females dominate the population of MCAS sufferers, why is it that 90%+ of POIS sufferers on this forum are male?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on February 26, 2020, 07:49:07 AM

"Demographically, white females dominated."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5341697/

That's unfortunate. It is a bit of a blow to the MCAS/POIS theory.

If females dominate the population of MCAS sufferers, why is it that 90%+ of POIS sufferers on this forum are male?

POIS might be a manifestation of MCAS which shows up in a small subset. This small subset could be dominated by men because men produce semen and thus have more ways to trigger mast cells compared to other sexual related triggers when throwing females into the mix. There have been more than 1000 different proteins mapped in human semen so far and that's only the protein part. It contains many mast cell mediators as well. The gender ratio of this POIS subgroup might be different than the gender ratio of the total general MCAS population.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: hurray on February 26, 2020, 07:31:42 PM

"Demographically, white females dominated."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5341697/

That's unfortunate. It is a bit of a blow to the MCAS/POIS theory.

If females dominate the population of MCAS sufferers, why is it that 90%+ of POIS sufferers on this forum are male?

POIS might be a manifestation of MCAS which shows up in a small subset. This small subset could be dominated by men because men produce semen and thus have more ways to trigger mast cells compared to other sexual related triggers when throwing females into the mix. There have been more than 1000 different proteins mapped in human semen so far and that's only the protein part. It contains many mast cell mediators as well. The gender ratio of this POIS subgroup might be different than the gender ratio of the total general MCAS population.

I largely agree with your reply, but it would seem to demonstrate that the "white females dominated" quote isn't statistically relevant for the purpose of linking MCAS to POIS.

Also, white people constitute a sizeable majority of the population in the USA where the study took place, so I am unconvinced that race is a significant factor.

Obviously, race can be a factor in certain specific illnesses (sickle-cell disease), but I haven't seen much evidence on this forum that it is a factor with POIS. The people who post here seem to come from a wide variety of countries and different parts of the world  :)
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on February 26, 2020, 07:42:34 PM
Also, white people constitute a sizeable majority of the population in the USA where the study took place, so I am unconvinced that race is a significant factor.

Good point. Here is an old poll also showing a significant racial asymmetry:
https://poiscenter.com/forums/index.php?topic=151.0
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: hurray on February 26, 2020, 08:06:18 PM
Also, white people constitute a sizeable majority of the population in the USA where the study took place, so I am unconvinced that race is a significant factor.

Good point. Here is an old poll also showing a significant racial asymmetry:
https://poiscenter.com/forums/index.php?topic=151.0

Interesting. The fact that this is an English language forum probably affected the results of the poll. Perhaps there is a Chinese poiscenter that we are unaware of  :)
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: demografx on February 26, 2020, 11:30:09 PM
hurray, you motivated me to Google for a Chinese POIS forum (Russia has one) - - no luck :(
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Investigator on February 27, 2020, 05:35:58 AM
Muon, you seem to have some insights about MCAS and POIS. I still haven't had the chance and time to read in depth about it. Could you think of some marker that can be tested in a lab that you suspect would turn out abnormal in us, compared to healthy subjects? If yes, well, we can do a self-study, a bunch of us on our own testing for that marker, maybe before as well as 24 hours after orgasm, and compare? Lab tests for immune markers are not even expensive. Maybe IFN-gamma? Or you can make some list. If it's not super fancy stuff, most labs in the various countries where we live would do it. But it would be great if we have an actual lab-measured marker that is off in POIS sufferers compared to a control group.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on February 27, 2020, 07:38:52 AM
Yes I can make a list of parameters. I don't think there is an unique marker for POIS (I changed my opinion about this over the years). If POIS is MCAS related then you will need to test a collection of parameters. People could show differerent parameter profiles, it's not as simple as testing for one or two things, although there are a few that are more likely to show up than others.

I will make a seperate thread for this and will place it under the 'investigation areas' category later this week or next week.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on February 27, 2020, 12:37:00 PM
However, recently I have been taking sertraline and I think it has made my symptoms worse and continuous. It's almost 3 weeks I am taking this pill and my symptoms are more in numbers and more severe and they tend to continue more than a week. 25 mg dose.

Table 12, Selective serotonin reuptake inhibitors:

Pharmacological treatment options for mast cell activation disease (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4903110/)

I cannot tolerate SSRIs myself.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: hurray on February 27, 2020, 02:45:00 PM
hurray, you motivated me to Google for a Chinese POIS forum (Russia has one) - - no luck :(

It was worth a try!  :)
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: demografx on February 27, 2020, 04:52:21 PM
Thanks, I won’t give up!

All of a sudden I have an inexplicable appetite for Chow Mein!...
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: nanna1 on February 27, 2020, 08:49:28 PM
This may be helpful for someone:

"Female orgasmic illness syndrome (FOIS) refers to those rare aversive symptoms that have been reported to occur prior to, during, or following orgasm, arbitrarily divided into central or peripheral aversive symptoms. Central aversive symptoms may include disorientation, confusion, impaired judgment, decreased verbal memory, anxiety/agitation/akathisia, insomnia, laughter, dysphoria/crying/depression, fatigue, seizures, muscle weakness/paralysis, and/or headache. Peripheral aversive symptoms may include diarrhea, constipation, muscle ache, sneezing, abdominal pain, diaphoresis, chills, hot flashes, pruritus, facial/ear/foot pain, and genital pain. Symptoms may last for minutes, hours, or days post-orgasm and varies widely within individuals. More research is needed."
-Pathophysiology and Medical Management of Female Orgasmic Illness Syndrome (2018) (https://sci-hub.se/10.1002/9781119266136.ch17)

Apparently, the authors have never heard of POIS. They do not cite any POIS literature.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: certainlypois2 on February 27, 2020, 09:54:49 PM
This may be helpful for someone:

"Female orgasmic illness syndrome (FOIS) refers to those rare aversive symptoms that have been reported to occur prior to, during, or following orgasm, arbitrarily divided into central or peripheral aversive symptoms. Central aversive symptoms may include disorientation, confusion, impaired judgment, decreased verbal memory, anxiety/agitation/akathisia, insomnia, laughter, dysphoria/crying/depression, fatigue, seizures, muscle weakness/paralysis, and/or headache. Peripheral aversive symptoms may include diarrhea, constipation, muscle ache, sneezing, abdominal pain, diaphoresis, chills, hot flashes, pruritus, facial/ear/foot pain, and genital pain. Symptoms may last for minutes, hours, or days post-orgasm and varies widely within individuals. More research is needed."
-Pathophysiology and Medical Management of Female Orgasmic Illness Syndrome (2018) (https://sci-hub.se/10.1002/9781119266136.ch17)

Apparently, the authors have never heard of POIS. They do not cite any POIS literature.
Interesting one of the author is The DR K from our previous study and the cited one of dr waldingers other papers.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on February 28, 2020, 07:17:36 AM
Pathophysiology and Medical Management of Female Orgasmic Illness Syndrome (2018) (https://sci-hub.se/10.1002/9781119266136.ch17)

Apparently, the authors have never heard of POIS. They do not cite any POIS literature.

Good find. It's B.R Komisaruk and I. Goldstein (https://poiscenter.com/forums/index.php?topic=2575.0), they are aware of POIS. 36 references and not a single reference to POIS while they are aware of it. How is this different from female POIS cases? They deliberately avoided mentioning POIS it seems. Why?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: nanna1 on February 28, 2020, 10:00:11 AM
This may be helpful for someone:

"Female orgasmic illness syndrome (FOIS) refers to those rare aversive symptoms that have been reported to occur prior to, during, or following orgasm, arbitrarily divided into central or peripheral aversive symptoms. Central aversive symptoms may include disorientation, confusion, impaired judgment, decreased verbal memory, anxiety/agitation/akathisia, insomnia, laughter, dysphoria/crying/depression, fatigue, seizures, muscle weakness/paralysis, and/or headache. Peripheral aversive symptoms may include diarrhea, constipation, muscle ache, sneezing, abdominal pain, diaphoresis, chills, hot flashes, pruritus, facial/ear/foot pain, and genital pain. Symptoms may last for minutes, hours, or days post-orgasm and varies widely within individuals. More research is needed."
-Pathophysiology and Medical Management of Female Orgasmic Illness Syndrome (2018) (https://sci-hub.se/10.1002/9781119266136.ch17)

Apparently, the authors have never heard of POIS. They do not cite any POIS literature.
Interesting one of the author is The DR K from our previous study and the cited one of dr waldingers other papers.

  Thanks certainlypois2, for pointing out Dr Komisaruk's involvement in POIS. I did not know much about him. I saw that they quoted one of Dr. Waldinger's (R.I.P.) non-POIS studies, which is why I was very confused. But I think that they are trying to create a new disease diagnosis which includes POIS but is not limited to POIS. Here is another one their papers:

"...As discussed earlier, the conditions of premature orgasm, PDOD, and FOIS are based on expert opinion. They should be considered provisional diagnoses until future research determines the validity of the diagnostic categories...
...There are no prevalence data on the current broader definition of orgasm disorders, including FOIS...
...Female orgasmic illness syndrome (FOIS).
  Pathophysiologies associated with FOIS include psychological, musculoskeletal, autoimmune, vascular, and peripheral and/or central neurologic factors. A subcategory of FOIS can be an autoimmune disorder characterized by symptoms caused by orgasm-associated cytokine release.158-161...
...158. Farley SJ. Postorgasmic illness syndrome. Nat Rev Urol 2011; 8:121.
159. Waldinger MD, Schweitzer DH. Postorgasmic illness syndrome: two cases. J Sex Marital Ther 2002;28:251-255.
160. Ashby J, Goldmeier D. Postorgasm illness syndrome: a spectrum of illnesses. J Sex Med 2010;7:1976-1981.
161. Rasmussen BK, Olesen J. Symptomatic and nonsymptomatic headaches in a general population. Neurology 1992;42: 1225-1231."

-Toward a More Evidence-Based Nosology and Nomenclature for Female Sexual Dysfunctions: Part II (2016) (https://www.jsm.jsexmed.org/article/S1743-6095(16)30429-5/pdf)

  In other words, I think they are having trouble getting POIS officially recognized as a disease that also occurs in women. So they are including/grouping POIS and other POIS-similar diseases under the broader umbrella of FOIS. They mention some female-specific POIS symptoms like orgasm-induced hot-flashes and crying. But the other symptoms they list seem to be shared with male-POISers. I do not agree with their assumption that POIS is an autoimmune condition. That seems to be what they are implying since in this 2016 review paper, they cite POIS literature to back-up their claims about FOIS. But this is a much older paper. Thanks again, I am learning new things! :)
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: demografx on February 29, 2020, 11:49:51 PM

This may be helpful for someone:

"Female orgasmic illness syndrome (FOIS)...


Thanks, nanna1! I passed along your entire post to our POIS Research Team. They have a long-standing interest in female sexuality and orgasm.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on March 08, 2020, 08:00:13 AM
Following O or even arousal, in less than 24 hours I get a fever, lose my appetite, my throat hurts so much I can barely swallow, I feel irritated and sometimes downright angry for no apparent reason, my skin gets very warm but I'm shivering and with a fast pulse... T

The Endogenous Pyrogens should be tested when fever is present. I don't understand why this hasn't been done already. Almost all of those endogenous pyrogens are mast cell mediators as well by the way. https://en.wikipedia.org/wiki/Fever#Pyrogens

"In essence, all endogenous pyrogens are cytokines, molecules that are a part of the immune system. They are produced by activated immune cells and cause the increase in the thermoregulatory set point in the hypothalamus. Major endogenous pyrogens are interleukin 1 (α and β)[49] and interleukin 6 (IL-6). Minor endogenous pyrogens include interleukin-8, tumor necrosis factor-β, macrophage inflammatory protein-α and macrophage inflammatory protein-β as well as interferon-α, interferon-β, and interferon-γ.[49] Tumor necrosis factor-α also acts as a pyrogen. It is mediated by interleukin 1 (IL-1) release.[50]

These cytokine factors are released into general circulation, where they migrate to the circumventricular organs of the brain due to easier absorption caused by the blood?brain barrier's reduced filtration action there. The cytokine factors then bind with endothelial receptors on vessel walls, or interact with local microglial cells. When these cytokine factors bind, the arachidonic acid pathway is then activated.
"
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on March 11, 2020, 08:08:04 AM
The only health problems I've had in my life are my soy allergy and an extreme sensitivity to cold (I never catch a cold or the flu from somebody else, but going outside in winter without four or five layers of clothes mean I'm going to get sick, 100% guaranteed). I also have very bad acne, I've had it since my first period, and I believe it's POIS-related because it gets noticeably worse during an episode.

"The role of stress Chronic stress may also lead to MC activation. In preclinical studies, several types of stresses and stress mediators such as corticotropin releasing hormone (CRF) and related peptides have been shown to modulate ion and water secretion as well as intestinal and colonic paracellular and transcellular permeability, primarily via nerve-MC interactions.36 37 Similarly, stress-induced rectal hyperalgesia could be prevented and reversed by administration of an MC stabiliser.38 Other studies have confirmed and extended this paradigm to the human intestine. Santos et al39 showed that a cold stress increased jejunal MC tryptase and histamine release along with intestinal water secretion, and intestinal permeability, with larger responses in women with moderate levels of background stress.40 CRF has been shown to enhance transcellular uptake of macromolecules in human colonic mucosa via CRF-R1 and CRF-R2 receptors located on subepithelial MCs.41

More recently, acute psychological stress (public speech) has been shown to increase small intestinal permeability in humans.42 This effect could be reproduced by peripheral administration of CRF, and blocked by the MC stabiliser disodium cromoglycate (DSCG). Preclinical models showed that chronic stress can induce substance P (SP) release by efferent nerves in the periphery, leading to CRF expression and release by intestinal eosinophils. Eosinophilderived CRF was then capable of activating MCs, resulting in jejunal epithelial barrier dysfunction.43 SP, NGF and sex steroids also induce the release of vasoactive mediators from MCs, contributing to chloride secretion, barrier dysfunction, hyperalgesia, diarrhoea, inflammation and motility changes.
" Ref (https://sci-hub.se/10.1136/gutjnl-2015-309151)

I bet the soy did something to her intestinal MC numbers, function or phenotype.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on March 17, 2020, 06:46:38 PM
15) My two grandmothers died from breast cancer, and one of my grandfathers died of prostate cancer...
"To give you another example, mast cells are found around solid tumors. They?re 10 times as many mast cells around the breast cancer, for instance. However, the mast cells in the breast cancer do not degranulate. What the cancer cells to do, which is absolutely fascinating to me, is they release molecules that they block the mast cell from degranulating, in which case, tryptase, histamine, whatever have you were destroyed. They block the mast cell from releasing tumor necrosis factor. They selectively stimulate the mast cell to release vascular endothelial growth factor that makes, of course, new blood vessels and the cancer can actually feed itself and metastasize." Ref (https://www.drkarafitzgerald.com/2018/11/20/mast-cell-clinical-researcher-dr-theoharides/)

More about mast cells and cancer:
Page 14/24 Cancer and Tumor Progression (https://sci-hub.se/10.1007/s12016-019-08769-2)
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: nanna1 on March 17, 2020, 08:01:35 PM
There are many other threads where discussing these ideas about disease would be more appropriate. It would be nice if this thread could be a place to welcome girls and women to the POIS community and for them to be able to share their experience without heighten examination and scrutiny. :)
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: demografx on March 18, 2020, 12:56:32 AM
nanna1, thank you
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Timtim on March 29, 2020, 03:03:21 PM
@ TimTim: Do you have a high libido? And what is your ethnicity? And third, do you have any problems with your stool, like abnormal frequency of toilet visits or abnormal composition?

I don?t have a high libido, it is quite normal.
And I have frequency of toilet visit only after orgasm and this condition lasts for almost 24 hours.
I have recently noticed that if I am sexually aroused after orgasm, like a day or two day after orgasm, my pois symptoms will be very low and will stay for a short time. But if I am not sexually aroused, the symptoms stay for at least a week.
I used to take ginseng pill and it helped me with the symptoms, I think it helped me because it increases libido.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: marrtintintin on April 07, 2020, 02:43:09 AM
After meeting (online) a few, plus extensive interactions with one woman who was heavily self-identified as a POISer, I am not convinced females have POIS.

My guess is that POIS has a lot to do with semen. For example, Animus’ dry ejaculation = 10 years of no POIS.
Not just semen. Women do not go through a refractory period after orgasm.


Hi Nas, this might be a good point (about the refractory period). Are there theories about how the refractory period may trigger POIS?
Please, anyone answer as well. I was actually thinking that if women don’t get POIS (or not the same type), then by looking at the differences bt men and women, we can see what is at the root of the problem.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on June 07, 2020, 08:13:43 AM
I spent 4 months with colitis and lost half of my weight until thankfully my mother deduced that soy was the culprit.

Hmm, I don't think I expell any liquid, apart from normal natural lubrication (which I produce a lot of).

I came across this by chance:

"VIP seems to be an important neuropeptide during inflammatory bowel diseases since the communication between mast cells and VIP in colitis, as in Crohn's disease, is upregulated."

"VIP provokes vaginal lubrication in normal women, doubling the total volume of lubrication produced."

https://en.wikipedia.org/wiki/Vasoactive_intestinal_peptide
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on June 27, 2020, 05:14:26 AM
Heather1111 (https://www.reddit.com/r/POIS/comments/hgknmc/women_with_pois/):

"So are there any other women in here? I see this is mostly a man issue. I just came across this whole pois term for the very first time and it is completely me. I've been suffering with what I have been calling sex migraines for almost 5 years now. I have been to every doctor there is and most just look at me like I have two heads or something and don't know how to help me. Anyway, we have finally just recently through blood tests found out that my estrogen is high way off the charts and my testosterone levels are almost nonexistent. I get the worst headaches, confusion, lethargy, etc after sex that last for about a week. It's gotten worse over the last 5 years to where I dread it so much. Once I even got it so bad I thought I was having an aneurysm and went to the emergency room. My new doctor just started me out on a real low dose of testosterone. I'm really praying this is the answer. I've tried everything else."

"Thank you for responding! I've been reading through past posts. I finally feel like I have found "my people". I have felt like the only one in the world with this. None of my doctors have ever heard of such a thing where my symptoms last for a week or more. I have been feeling completely alien and broken. I've had CT scans, MRIs, seen many different specialist and nobody has been able to help me. After being told my testosterone levels are nonexistent I googled that and sex migraines and that is how I found POIS for the very first time ever and I've been researching sex headaches for years now. It's good to at least have a freaking name for what is ruining my life."

"I've been trying everything possible over the years. Just started real low dose of testosterone today. I'm going to be hopeful about that until proven otherwise. Mine is so low the lab thought it was a mistake and retested it. Haha! And my estrogen is insanely insanely high. Praying I get some kind of help. On day 7 of wanting to chop my head off."

"I have been searching for a diagnosis for what I have for years and I even tried to submit myself to migraine researchers to study for help but no luck. So I am thrilled to find this group. What I have is much more than the typical migraine though so that's why I never just fit good in the sex headache category. I get the symptoms of cluster #1 and #3 and they have lasted for as long as 2 weeks before. From reading about pois this is the only thing that finally describes what I get. Finally!!!!!! I will get a hold of my most recent lab tests and post here and will also be very active in letting everybody know how the testosterone supplement helps. The pharmacy compounded a cream for me but has me starting out at a very low dose."

"They did try me on progesterone a few months back as my levels are low and it was so horrible I couldn't be on it for more than a few weeks. It made me so incredibly sleepy and made me gain some weight in that short time. My hormones are all out of whack for some reason."
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: berlin1984 on June 27, 2020, 08:46:49 AM
I found a very interesting blog comment on a blog about chronic fatigue syndrome (which is mostly female sufferers):
(....)
 These thousands of men could be the missing men in CFS! Testosterone goes down after ejaculation and it takes a few days to come back. The things that help them are exactly the same as what helps people with CFS. The similarities are perplexing. To the extreme that I have given them lots of good material from CFS that they use now to alleviate symptoms. Many are just waiting for the CFS cure with the hope it will somehow benefit them.
(...)
(Click through to read the full blog comment)
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Nas on June 27, 2020, 10:01:47 AM
I found a very interesting blog comment on a blog about chronic fatigue syndrome (which is mostly female sufferers):
(....)
 These thousands of men could be the missing men in CFS! Testosterone goes down after ejaculation and it takes a few days to come back. The things that help them are exactly the same as what helps people with CFS. The similarities are perplexing. To the extreme that I have given them lots of good material from CFS that they use now to alleviate symptoms. Many are just waiting for the CFS cure with the hope it will somehow benefit them.
(...)
(Click through to read the full blog comment)
Yes but I wouldn't describe what I suffer from as "fatigue". It's mostly anhedonia, and severe brain fog.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on June 27, 2020, 10:15:21 AM
annonny2:

"And before then you were completely fine? Also is it after orgasm or still occurs without O? For me it's only after I ejaculate, whereas if I orgasm without ejaculating I don't get the symptoms. Can you think of anything in your life that changed then?"

heather01111:

"Yes I was completely fine. I think I've always been more sexual my whole life than other women is the only thing. This has been going on for about 4 or 5 years. For the first 3 years it was only after having an orgasm. Now it is anytime I have sex even if I try to pretend like it isn't even happening and even if sex only lasts 3 minutes. (my poor husband is so deprived now) It even happens now with breast stimulation only."

It happens while having sex without reaching an orgasm you mean? Does your husband use a condom? And what do you mean by breast stimulation?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Heather1111 on June 27, 2020, 10:59:51 AM
Yes it happens after even the most boring sex without an orgasm. I will try to pretend like I'm not even having sex, not even move, etc and it still happens. No my husband doesn't wear a condom. No I'm not allergic to semen as it will happen with just a vibrator or anytime I am stimulated in any way whatsoever. I didn't tell my husband for like 6 months that I was getting this after all sex because I didn't want to devastate him. We went on a cruise. He started fondling my breast with his hands and his mouth. I had to stop him and tell him what was going on because I didn't want the whole cruise to be ruined. I ended up STILL getting a headache and all of the symptoms an hour later!!! That was when a lightbulb went off for me. This had to be hormonal. Breast stimulation mimics breast feeding which releases hormones. So when I got back I started getting my hormones checked. I thought my prolactin levels might be off but they were fine. My estrogen levels are through the roof. My progesterone levels are super low and my testosterone levels are nonexistent.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on June 27, 2020, 11:50:28 AM
We went on a cruise. He started fondling my breast with his hands and his mouth. I had to stop him and tell him what was going on because I didn't want the whole cruise to be ruined. I ended up STILL getting a headache and all of the symptoms an hour later!!!

Were you emotional upset at the moment you told him that?

Have you ever tried squeezing your breasts in a non-sexual manner in a non-sexual setting for a while and observed what happens afterwards?

Do you get any symptoms from arousal alone?

That was when a lightbulb went off for me. This had to be hormonal. Breast stimulation mimics breast feeding which releases hormones. So when I got back I started getting my hormones checked. I thought my prolactin levels might be off but they were fine. My estrogen levels are through the roof. My progesterone levels are super low and my testosterone levels are nonexistent.

Yes but I find it weird you got the symptoms an hour later. The combination of these abnormal hormone levels do not surprise me at all. I have seen a similar case in literature and it can affect certain cells as well in a negative way.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Heather1111 on June 27, 2020, 02:04:56 PM
I used to get symptoms the next day, but as things have gotten worse the symptoms appear sooner. Me squeezing my books in a sexual manner does nothing. Yes of course I was upset when I told him but I never have symptoms when I'm upset otherwise about anything else. I do not allow myself to become aroused in a sexual setting. Although I will have sexual dreams and wake up experiencing symptoms with the whole migraine, confusion, etc.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on June 27, 2020, 03:00:40 PM
I asked about your breasts because pressure itself might be a trigger.

There is a case in literature with low T and high estradiol (which is an estrogen).

See eTable 1: https://www.smoa.jsexmed.org/article/S2050-1161(18)30019-9/fulltext

When did you do the measurements, when you were symptomatic?

Do you have a high libido?

Are you sensitive to stress?

Have you tried antihistamines that can act on your brain like Hydroxyzine or Benadryl?

All of her abnormal sex hormone levels favor a mast cell stimulatory state, table 1:
https://onlinelibrary.wiley.com/doi/full/10.1111/exd.13288
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: ThisType on June 27, 2020, 10:23:12 PM
There are possible genetic links that may be in play.  Choline absorption appears to be limited in my case for instance due to genetic factors as far as I can tell. Choline supplementation +intense exercise (lookup HIIT) a few times a week makes a difference for me.

Additionally, down similar lines, there are sleep related issues like choline production during REM (or lack of it), for women choline and estrogen reduction during menopause (or after loss of ovary function). Women typically need less choline than men but similar amounts during breastfeeding for instance.

 I don't know if this pathway is relevant or helpful but at least something to consider.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on June 28, 2020, 06:12:27 AM
(https://upload.wikimedia.org/wikipedia/commons/1/13/Steroidogenesis.svg)
Picture from: https://en.wikipedia.org/wiki/Progesterone

There could be something wrong with the conversion rate ratios of the enzymes. There are some diseases associated with enzyme abnormalities: https://en.wikipedia.org/wiki/Aromatase_excess_syndrome

"Observed physiological abnormalities of the condition include a dramatic overexpression of aromatase and, accordingly, excessive levels of estrogens including estrone and estradiol[5] and a very high rate of peripheral conversion of androgens to estrogens. In one study, cellular aromatase mRNA expression was found to be at least 10 times higher in a female patient compared to the control, and the estradiol/testosterone ratio after an injection of testosterone in a male patient was found to be 100 times greater than the control."

my libido is always insanely high
Hmm, I don't think I expell any liquid, apart from normal natural lubrication (which I produce a lot of).

Estrogen ---> Increased vaginal lubrication (VIP (https://poiscenter.com/forums/index.php?topic=2755.msg34758#msg34758) is another one) and increased libido.

https://en.wikipedia.org/wiki/Estrogen

https://en.wikipedia.org/wiki/Sexual_motivation_and_hormones

I wonder if Heather measured her cholesterol and vitamin D levels. The other women on this forum do have low vitamin D. Cholesterol is also used in the synthesis of Vit D if I'm not mistaken, aside from hormones.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on June 29, 2020, 05:21:42 PM
If aromatase is higher expressed or shows increased activity then applied T may get converted faster to estrogens than therapy can keep up. But they might give you something for this while using low dose T (ask your doctor).

Take a look at this Heather, some natural products are inhibitors of aromatase, you could try those (ask your doctor first):

https://en.wikipedia.org/wiki/Aromatase#Inhibition_of_aromatase

Hmm some of these are flavonoids.

Edit:

Alternatively you could look up in literature what inflammatory markers are capable of suppression of these hormones or enhancing enzyme activities and use flavonoids to modulate it, Table 1:

The Role of Quercetin, Flavonols and Flavones in Modulating Inflammatory Cell Function (https://sci-hub.tw/https://www.ingentaconnect.com/content/ben/iadt/2010/00000009/00000004/art00006)
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: hurray on June 30, 2020, 04:35:07 AM

There could be something wrong with the conversion rate ratios of the enzymes. There are some diseases associated with enzyme abnormalities: https://en.wikipedia.org/wiki/Aromatase_excess_syndrome


It seems unlikely that she suffers from aromatase excess syndrome. It seems to be significantly rarer than POIS.

https://en.wikipedia.org/wiki/Aromatase_excess_syndrome

Quote
To date, 30 males and 8 females with aromatase excess syndrome have been described in the medical literature.

Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on June 30, 2020, 05:40:43 AM
I agree with you there hurray. Also the symptoms don't fit but I meant it more in a generalized way regarding enzymes. Even if aromatase acts normal suppression might be an idea.

Researchers could collect a POIS group with low T and find out if an inflammatory parameter is responsible for driving it down IMHO.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on July 04, 2020, 07:32:26 AM
If people see more females claiming to have POIS, send them to this thread otherwise these folks tend to get lost in a sea of messages and threads.

hamburgerspaceship (https://www.reddit.com/r/POIS/comments/f2hkzz/new_paid_pois_study_in_los_angeles/fho9ljl?utm_source=share&utm_medium=web2x):

"So glad someone is doing this!! I'm female but lmk if I can still be helpful :)"

Mariapol989 (https://www.reddit.com/r/POIS/comments/einzlj/women_and_pois_symptoms/):

"Hi everyone! I'm woman and I suffer from POIS for 6 years, are there women who have the same problem? I eat according to Anticandida diet, take vitamin D + K2, ferrum. I'm very curious about the ways you get rid of the symptoms: brain fog, depression and an endless list of POIS gift.

Hope to get the cure in 2020! God bless you all.
"

Mermaid (Nakedscientist from 2012) (http://thenakedscientists.com/forum/index.php?topic=6576.msg395064;topicseen#msg395064):

"Doesnt everyone know by now this is all about prolactin/dopamine? I am new to this post but I am not sure if that has been mentioned at all in the 709 previous pages but dont people know by now the cause of this illness is hormonal?!

The cause of POIS is most likely due to the surge in prolactin which stays elevated for days post orgasm. Prolactin counters dopamine, which causes tiredness, depression, anxiety, etc. So really, you are dealing with 2 problems. One is the side effects of high prolactin and the other is the side effects of low dopamine. Excess prolactin also can result in higher cortisol, blunted thyroid response, etc! Has no one has figured this out by now on this post?

I am actually a 22 year old female in college and have this so I am seeing a doctor to see about lowering prolactin levels. I didnt start suffering with this until 2 years ago so I am trying to put it all together. I am going to my doctors to see about getting an MRI to see if I have a prolactinoma. It makes sense to me that if I have a prolactinoma (tumour in my pituitary causing increased prolactin) that is already giving me high prolactin levels, then an orgasm, which greatly increases prolactin as well, could tip my system over the edge and just knock all dopamine down to nothing. So, if you have POIS, I suggest you see a doctor who can tell you whether you have high prolactin levels naturally, low dopamine/low testosterone/low progesterone/excess estrogen which all can leave one susceptible to prolactin, or some other condition like hypothyroidism that will make you not be able to tolerate the surge in prolactin post orgasm.

I really feel for you all I know this is super annoying. I didnt start connecting my symptoms to orgasm until recently but since I have stopped ummm...well you know! lol... I feel much better! Of course its just my luck that I had to have an orgasm in my sleep this morning and put me back at square one! UGH!!!!! But I will figure this out I am making an appt with a very good physician tomorrow that my school clinic recommended.

Hope this helps!
"

ajs (https://www.thenakedscientists.com/forum/index.php?topic=6576.msg416323;topicseen#msg416323)

"I'm a woman and I have pois so I personally know it has nothing to do with allergy to seamen....I have been reading since the beginning and I remember that girlwind was very irritated by the moderater and I agree his ego and wanting to be right all the time was annoying and I really wish she did not leave...my pois turned into chronic fatigue and fibromyalgia and I could not digest anything and went to get food tested and my back welted up to everything but my blood work showed no allergies to food...I do know that my pois started after getting shingles....all the testing I've done and the only thing they have found were very high levels of antibodies to three different viruses"
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on July 05, 2020, 02:24:26 PM
"Tamoxifen may, therefore, have a beneficial effect in other neuroimmunoendocrine disorders both through estrogen receptor blockade and inhibition of mast cell secretion."

Estradiol Augments while Tamoxifen Inhibits Rat Mast Cell Secretion (https://www.karger.com/article/Abstract/236217)
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on July 07, 2020, 06:16:56 AM
Hi IronFeather,

Have they ever checked your testosterone and estrogen level?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on July 08, 2020, 10:01:20 AM
Estrogen ---> IFN-g:

"(1) estrogens upregulate IFN-γ secretion, a vital immunoregulatory cytokine"
Interferon-γ levels are upregulated by 17-β-estradiol and diethylstilbestrol (https://www.sciencedirect.com/science/article/abs/pii/S0165037801001176)

IronFeather had colitis (=IBD)
IFN-g ---> Tight junction modulation ---> IBD/(auto)-immune disease

"Cytokine mediated changes in paracellular permeability contribute to a multitude of pathologic conditions including inflammatory bowel disease (IBD), airway inflammation in asthma [1] and cystic fibrosis [2], and diseases that perturb the blood-brain barrier (BBB) "
Cytokine regulation of tight junctions (https://www.sciencedirect.com/science/article/pii/S0005273608003064)

Estrogen can also affect NK cell activity and numbers.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on July 09, 2020, 12:07:51 PM
I believe these growth-factors are questionable for longevity.  We POIS'ers I think have a gifted DNA repair/archival process, and by un-necessarily keeping mTOR channels active long-enough is not conducive for longevity.  I actually appreciate Quantum's stack (its super healthy without all the growth on you everywhere) but I have not had any success with it. 

I have just exploring VEGF if that can improve our epithelial tissue ONLY without all that systemic all-across growth (that comes with other growth factors).  nanna1, Muon, and all you rest POIS'ers (or former POIS'ers), any thoughts?   

You may want to have a look at this swell: https://poiscenter.com/forums/index.php?topic=2695.msg35257#msg35257
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: IronFeather on July 13, 2020, 02:07:00 PM
Hi IronFeather,

Have they ever checked your testosterone and estrogen level?

Hi Muon! Yes, they have. As far as I remember, both came back normal... Right now I'm really sick with a full-on pois attack, and I don't even know what caused it. Lymph nodes swollen everywhere, extreme fatigue (this is a new one for me), fever, nausea... I don't know what to do anymore.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Heather1111 on July 13, 2020, 09:49:49 PM
Hi guys! I missed a post from earlier above with some questions. Sorry about that.  Before POIS yes I always had an extremely high libido. More than any boyfriend or husband I ever had. Although since it started making me feel so bad sex is the last thing I want to do.

I'm somewhat always stressed due to running my own business and taking care of my family.

I have done 3 hormone tests over the last year. All were when I was not symptomatic. All showed very high estrogen and non-existent testosterone. I will be happy to upload those here if that's possible.

I did show on one of the test my cholesterol was a little high which shocked me a lot.  My last test a few weeks ago showed low vitamin D which also shocked me considering I literally take a vitamin D pill every day and I'm outside a good bit.

I have been experiencing this for about 4 or 5 years now and the symptoms have gotten considerably progressive worse over time.

Anyway, I can round up all of my blood test and upload them if anybody wants.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on July 14, 2020, 04:56:20 PM
I did show on one of the test my cholesterol was a little high which shocked me a lot.  My last test a few weeks ago showed low vitamin D which also shocked me considering I literally take a vitamin D pill every day and I'm outside a good bit.

I'm not surprised by these answers. My POIS doctor told me once he had a patient who expressed a vitamin D level close to zero and couldn't get it up by Vit D supplementation.

Anyway, I can round up all of my blood test and upload them if anybody wants.

Yes please, you may post them here: https://poiscenter.com/forums/index.php?topic=2684.0

And discuss about them here: https://poiscenter.com/forums/index.php?topic=2695.0
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Journey on July 17, 2020, 01:52:32 AM
I did show on one of the test my cholesterol was a little high which shocked me a lot.  My last test a few weeks ago showed low vitamin D which also shocked me considering I literally take a vitamin D pill every day and I'm outside a good bit.

I'm not surprised by these answers. My POIS doctor told me once he had a patient who expressed a vitamin D level close to zero and couldn't get it up by Vit D supplementation.

Anyway, I can round up all of my blood test and upload them if anybody wants.

Yes please, you may post them here: https://poiscenter.com/forums/index.php?topic=2684.0

And discuss about them here: https://poiscenter.com/forums/index.php?topic=2695.0
Isn't VitaminD used by immunity? Immunity or something else could be using up VitaminD in POIS or there's issue forming it so VitaminD deficiency causes/is related to POIS, not because of no sun/supplementation but as something prevents it from generating optimally.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on July 17, 2020, 08:02:22 AM
Isn't VitaminD used by immunity? Immunity or something else could be using up VitaminD in POIS or there's issue forming it so VitaminD deficiency causes/is related to POIS, not because of no sun/supplementation but as something prevents it from generating optimally.

It is low in auto-immune diseases, inflammatory bowel disease, MCAD, malabsorption and can lead to osteoporosis. Low Vit D is probably the most frequent abnormality I've encountered so far on this forum and yet only one POIS paper has stated that the role of vit D could be investigated.

"It is also important to establish any influence on males with POIS, of the 25-OH D vitamin deficiency, if we consider the epidemic character and the implications of this vitamin(7)." Ref (https://www.revmedchir.ro/index.php/revmedchir/article/view/1798/1449)

The enzymes that play a role in vit D metabolism are Cytochrome P450 enzymes (indicated with CYP):
https://www.wikipathways.org/index.php/Pathway:WP1531

I haven't put time into this yet but noticed this today. The potential processes behind abnormalities seen in POISers, at least in this thread, might be driven by Cytochrome P450 enzymes (or their genes), https://en.wikipedia.org/wiki/Cytochrome_P450:
"Cytochrome P450 enzymes are present in most tissues of the body, and play important roles in hormone synthesis and breakdown (including estrogen and testosterone synthesis and metabolism), cholesterol synthesis, and vitamin D metabolism."

Also these enzymes seem to need iron, low iron is also seen in POISers:
https://en.wikipedia.org/wiki/Cytochrome_P450#Structure

They also play a role in AA metabolism and could lead to inflammation by the molecules depicted in red, some POISers may actually suffer from an active inflammatory pathway via P450 instead of COX:
(https://ars.els-cdn.com/content/image/1-s2.0-S0021967315010882-gr1.jpg)

This family of enzymes can be affected by many things including diet. These enzymes are wide spread and I wonder if they can induce multi-system symptoms aside from conditions like MCAS.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: drop247 on July 17, 2020, 03:29:53 PM
We need to check the "control" group to before we can say low Vitamin D is especially prevelant in this disorder POISers. What I'm saying is I suspect it's low in huge amount of the population.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on August 30, 2020, 03:21:26 PM
How is it going with the TRT treatment?

I'm actually a little confused. I was doing really great. Actually even had an orgasm last week and had absolutely zero symptoms afterwards. Thought I was cured!! This was the first time I have had an orgasm in a looooong time. Had sex (no orgasm) Friday night. I did end up with a headache by Saturday morning. I still have a slight headache now. It's definitely not as bad as before by any means. It's actually just more of the headache too instead of all of the brainfog and confusion and irritability that I used to get. I go back to the hormone doctor Tuesday. I'm still on a super ridiculously low dose of testosterone. I'm going to ask for my dose to be increased. I absolutely am doing much better than before though. There is drasticimprovement over how I used to get. I think I've had sex 4 times since starting the testosterone and one orgasm  and this is the first headache I have gotten. That's amazing for me.

My Test prescription is a cream that is compounded. It is 2 mgs, but I only apply .25 mgs of that daily.

Got my blood test back. My testosterone level went from basically zero to a 4. Even with getting a headache the last time that was still a huge improvement over what it used to be. So still keeping my fingers crossed.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on September 05, 2020, 12:31:30 PM
Heather's headache:

Mast Cells in Stress, Pain, Blood-Brain Barrier, Neuroinflammation and Alzheimer's Disease (https://www.frontiersin.org/articles/10.3389/fncel.2019.00054/full)

"Migraine is also known to induce BBB permeability"

"Increased BBB permeability causes edema, increased S100B expression, and neuroinflammation (Koh and Lee, 2014). Activated mast cells cause both neuronal response and vascular response, as they are close to BBB structure and neurons. Stress-induced mast cell activation in dural vasculature plays an important role in the acute and chronic headaches"

"Because of the presence of vicious positive-feedback mechanism of mast cells and glial cells activation with inflammatory mediators’ release, even a small number of mast cells can induce significant neuroinflammation in the brain. In fact, about 50% of histamine and 25% of tumor necrosis factor-alpha (TNF-alpha) are from the mast cells in the rat brain that can cause nociception and pain signals in the brain"

Things to test during headache: TNF-alpha (+IL-1beta and IL-6)

If headache affects BBB: VEGF, S100B

More parameters under the header: Mast Cells, Pain, and Neuroinflammation

Milnacipran worked for Hurray's brainfog + testosterone patches worked for his symptoms similar to TRT helping Heather: Anti-inflammatory and anti-hyperalgesic effects of milnacipran in inflamed rats: involvement of myeloperoxidase activity, cytokines and oxidative/nitrosative stress (https://link.springer.com/article/10.1007/s10787-020-00726-2)

Additionally IL-1beta and IL-6 could be tested.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on September 08, 2020, 11:37:11 AM
I see you believe that mast cell activation syndrome could be the main cause of POIS, do you think it can cause acne too?

Maybe:

https://www.reddit.com/r/POIS/comments/ioi1lm/antihistamines_definitely_reduced_acne/

New Aspects in Acne Inflammation (https://www.karger.com/Article/Abstract/67818)

Neuroendocrine regulation of sebocytes - a pathogenetic link between stress and acne (https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1600-0625.2004.00254.x)

"These findings suggest that SP may stimulate lipogenesis of the sebaceous glands which may be followed by proliferation of Propionibacterium acnes, and may yield a potent influence on the sebaceous glands by provocation of inflammatory reactions via mast cells."
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on September 11, 2020, 01:14:13 PM
How does the strength/intensity of orgasm affect POIS symptoms in female POISers? Any female that want to answer this?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on September 22, 2020, 01:38:41 PM
https://myvagina.com/mast-cell-activation-syndrome/
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: abdul on September 26, 2020, 02:22:02 PM
Hi everyone. I am a female poiser.
I am 27 and I had the symptoms since I was 10 or something.
I used to overmasturbate. And I think my pois is because of excessive masturbation
 I started masturbating at the age of 10 or so I guess, however this habit was not an ongoing one. I mean it was on and off. at the age of 19 I stopped masturbating and having sex and I did not have NE and that age. After 1 year of not having orgasm my symptoms have been reduced, but did not disappear. My face used to get very ugly and my stress level was super high. Now I still get ugly after orgasm but not as much as it used to get, and I still have all symptoms but in a lighter level compared to the past. But it is still VERY annoying. I decided to stop having orgasm for a couple of years but that seems impossible because of NEs. Every 6 day one NE!
I am sure my pois is because of over masturbation
My question is if any of you has the same problem? Did you over masturbate?
Do you think excessive masturbation or masturbating at early age (before puberty) caused your pois, too?

I believe that our nervous systems have been overstimulated by excessive orgasms and we need to find out to restore its normal functionalities 
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: demografx on September 26, 2020, 02:49:00 PM
abdul, welcome to the forum!
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on September 27, 2020, 09:48:49 AM
"I have been to every doctor there is and most just look at me like I have two heads or something"

I've got a question for the two-headed woman. Where is the pain of the headache located? Is it focal or is it evenly distributed throughout the whole brain? Is it constant throughout the day, fluctuating, throbbing? How do you sleep with this? With other words what are the dynamics?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: nanna1 on September 27, 2020, 10:31:33 AM
I've got a question for the two-headed woman. Where is the pain of the headache location?...
A two headed person will have a splitting headache!
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on September 27, 2020, 10:37:54 AM
I've got a question for the two-headed woman. Where is the pain of the headache location?...
A two headed person will have a splitting headache!
Hahahah
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on September 29, 2020, 07:22:02 AM
Well I don't have 2 heads (thank God because headaches on 1 head is enough!!!) But I am one that gets severe headaches after sex.  It is all over my head. It is not in one spot. In the past it would start out like my head felt deprived of oxygen or something and was very dull achey brain foggy confused feeling. It almost felt as if my brain was burning. I do not sleep well when it is like this. I am very aware of my head the whole time as it feels injured. Normally I sleep like a rock. After a few days of this my headache moves into a more classic headache where it's just painful like a really bad headache. Oddly enough I welcome that because I know I'm out of the first stage and will be better in a few more days. I have to say though since starting testosterone I am not experiencing these kind of severe headaches.  My hormone doctor is being extremely conservative with my medication and I'm not to happy about that.  My testosterone level is still only testing at 4. She has me on such a light dose. I'm going to see my OBGYN on Thursday to discuss my hormone levels with her.

https://poiscenter.com/forums/index.php?topic=2755.msg36770#msg36770
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on October 08, 2020, 04:43:49 PM
https://www.thenakedscientists.com/forum/index.php?topic=14697.msg478002#msg478002

Giggly:
"I truly thought I was the only woman alive experiencing this.  For me, this all started AFTER menopause (I'm 53) and no longer had to take birth control pills (I was on those for 20+ years).  I thought maybe those two things combined were causing this.  After intercourse, I would feel nauseous, dizzy, stuffy nose, sneezing.  This lasts for 4-6 hours.  I thought I was going crazy.  I read somewhere that taking Benadryl 30 minutes before intimacy would help, and it does, but just a bit.  Sure would like to find out more info. on this subject for women."

https://en.wikipedia.org/wiki/Combined_oral_contraceptive_pill#Formulations

https://en.wikipedia.org/wiki/Birth_control_pill_formulations
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on October 11, 2020, 08:18:50 AM
Mallory (https://www.thenakedscientists.com/forum/index.php?PHPSESSID=ptq3bd0gu41qvcoq6e09uoddq5&topic=14697.msg177763#msg177763):

"I exercise frequently but get a similar headache only when I go running for some reason.. minus the flu symptoms though."

lovelife28 (https://www.thenakedscientists.com/forum/index.php?topic=14697.msg344849#msg344849):

"I also get the same kind of headaches after a high paced workout."

 Effects of endurance exercise on serum concentration of calcitonin gene-related peptide (CGRP): a potential link between exercise intensity and headache (https://www.degruyter.com/configurable/contentpage/journals$002fcclm$002fahead-of-print$002farticle-10.1515-cclm-2019-1337$002farticle-10.1515-cclm-2019-1337.xml)

https://poiscenter.com/forums/index.php?topic=2885.msg37012#msg37012
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on October 18, 2020, 02:24:08 PM
Quote from: Dr. Theoharis Theoharides
Right, but if I've been tracking mediators for instance, and I don't know what on earth is going on and antihistamines don't seem to be helping very much, then at least I want to make sure that I'm not missing something that might be correctable. Also, if someone has a lot of headaches and all of these patients are miserable because of the headaches and migraines, I will measure the molecule called CGRP, calcitonin gene related peptide. Not only is it a very strong trigger of mast cells, but as of a few months ago, there is now a CGRP receptor antagonist for prophylaxis of migraines
Ref (https://www.drkarafitzgerald.com/2018/11/20/mast-cell-clinical-researcher-dr-theoharides/)
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on October 25, 2020, 08:28:29 AM
Crosslinking from the MCAS thread, https://poiscenter.com/forums/index.php?topic=2301.msg35429#msg35429 :

Mallory (https://www.thenakedscientists.com/forum/index.php?PHPSESSID=ptq3bd0gu41qvcoq6e09uoddq5&topic=14697.msg177763#msg177763):

"I am so glad to have found this... .trust me you are not the only woman with this problem!  I am 27 and have been experiencing the very same problem for the last few years.  During and immediately after orgasm, from intercourse or masturbation, I get  body and joint aches, neck stiffness, throbbing headache and nausea. This also happens when I perform oral sex on my husband, that does not result in an orgasm on my end.   It's the worst for several hours but the flu like symptoms will last for days. I have been gluten and dairy free for 4 years now, so it isn't allergies.  I have recently been diagnosed with fibromyalgia  and a tentative  MS dx, but still need a spinal tap.  Do you have any other illness, nerve pain, or odd symptoms..... do you get the same feeling with intense exercise?  I exercise frequently but get a similar headache only when I go running for some reason.. minus the flu symptoms though.  I have a normal body weight and BMI, and have normal blood pressure and blood work.  My doc has be taking 400 mg of riboflavin daily, which is apparently for migraines, although I never really get headaches at any other time"

Oral sex: Non-IgE mediated activation of mucosal mast cells?
Fibromyalgia: Often comorbid with MCAD
Multisystem symptoms and odd symptoms induced by triggers: Typical MCAD
Exercise: potential mast cell trigger

Many women have CFS on the TNS forum which is also often seen comorbid with MCAD.

I wonder if desensitization with diluted ejaculate from men works for her case.

Edit: Btw about CGRP and headaches from the previous posts and this one. Atopic dermatitis:

"In conclusion, SP and CGRP but not VIP fibres were more frequent in lesional than in nonlesional papillary dermis of both AD and NE. Since mast cells are also increased in number in lesions of AD and NE, they are able to maintain neurogenic inflammation through activation by SP and CGRP. The increased SP/CGRP nerves in the epidermis of AD and NE lesions may stimulate keratinocytes to release cytokines which affect various cell types enhancing inflammation."

Mast cells, nerves and neuropeptides in atopic dermatitis and nummular eczema (https://sci-hub.se/10.1007/s00403-002-0378-z)

Edit 2: Substance P can induce nausea. https://en.wikipedia.org/wiki/Substance_P

"SP is a trigger for nausea and emesis"

Conclusion: We could be dealing with the neuropeptides SP and CGRP (or increased SP/CGRP nerves) , both are mast cell triggers. In addition SP is a MC mediator and MC autocrine trigger. 
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on October 26, 2020, 04:31:09 PM
Dumping this here, it emphasizes females: Serotonin and CGRP in Migraine (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4117050/)

Some women here report a short time of stimulation before reaching O. Also some depression. This could indicate low serotonin.
Many show low vitamin D which is involved in the regulation of serotonin: Vitamin D hormone regulates serotonin synthesis. Part 1: relevance for autism (https://faseb.onlinelibrary.wiley.com/doi/full/10.1096/fj.13-246546)

Low serotonin and high CGRP in migraines of females, influenced by estrogen.

"There is no doubt that serotonin and CGRP levels in neuronal tissues are affected by physiological hormonal intervention specifically the estrogen making women predisposed to migraine."

Heather got chronic high estrogen and headache. Her burning phase before classical headache could indicate involvement of neuropeptides (which ones?).

"Similarly, cessation of intake of birth control pills, produce headaches due to fall in serotonin levels. Furthermore, if sudden decreases in estrogen can precipitate attacks then chronic high estrogen levels can also increase the likelihood of migraine. In fact, the varying levels of estrogen are the main culprit rather than the drop in estrogen."

Giggly (https://poiscenter.com/forums/index.php?topic=2755.msg36953#msg36953) developed POIS after cessation of birth control pills.

"The malfunctioning in the modulation of the pain signal in the periaquaductal grey (PAG) in midbrain was thought to be an underlying mechanism for migraine attack."

This area is activated in men not in women during orgasm:
 Anatomy and Physiology of Erection, Ejaculation, and Orgasm (https://sci-hub.se/10.1007/978-1-4939-3100-2_5)

"While these are similar between genders, in men there is additional activation in the periaqueductal gray matter."

Switching to men again: " He  initially presented for a “strong dysphoric status after intercourse”,  during  the  last  months  before his  visit,  “aggravating  each  time,  from  ab-dominal   pain   and   nausea   to   generalized sickness”, to which obnubilation, confusion and severe migraine were added." (Stafie, 2019 (https://www.revmedchir.ro/index.php/revmedchir/article/view/1798/1449))

Haven't read the full paper about migraines yet, saw SP and P/Q type calcium channels being discussed. We need a researcher to look at these female cases and compare them to men.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: demografx on October 26, 2020, 06:16:40 PM

Dumping this here, it emphasizes females...


At this time, do you feel that female data relates to male POIS?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on November 07, 2020, 07:19:12 AM
Female with POIS new here, possible POIS also triggered by stress and exercise (https://poiscenter.com/forums/index.php?topic=3575.0)

takedrugstoletgo:

"Hi all,

I recently came across POIS. I have had issues with depression and anxiety for a long time which only happen after orgasm or stress (including exercise). My symptoms are: generalized pain, poor stamina and sluggishness after orgasm, muscle weakness, flu like symptoms (runny nose/headache) night sweats, bad mood/temper, general depression and sadness after sex, hair loss.

I first managed it with Dextroamphetamine which is used for ADHD but now not even that helps and i will feel like crap for up to 10 days after sex or stressful days and exercise. I also have severe heat sensitivity after sex and feel like crap for a long time after with very little motivation. I tend to get severe sugar cravings alcohol cravings in POIS and feel extremely tired and weak. I also look awful, very puffy and my face looks kind of deformed and have cold hands and feet. I get diarrhea sometimes too during POIS.

Just came up with a new plan to try and heal myself which include water fasting, cold showers, low intensity exercise (walking mainly) and i stopped eating carbs. My doctor prescribed propranolol (beta blocker) and Xanax. I also stopped caffeine but that hasn't helped much yet.

Hoping to learn more here and wish everyone good look with trying to cure POIS. Will be active on forum as much as i can. I have a week off of work now and plan on water fasting all week.
"

Dumping this here, it emphasizes females...
At this time, do you feel that female data relates to male POIS?

Some of them do show similar patterns in symptomatology yes, see above for example. In the end researchers have to figure this out.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: demografx on November 07, 2020, 08:53:32 AM
Dumping this here, it emphasizes females...
At this time, do you feel that female data relates to male POIS?

Some of them do show similar patterns in symptomatology yes, see above for example. In the end researchers have to figure this out.

Thanks, Muon!
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on November 08, 2020, 10:50:45 AM
https://www.thenakedscientists.com/forum/index.php?topic=14697.msg478002#msg478002

Giggly:
"I truly thought I was the only woman alive experiencing this.  For me, this all started AFTER menopause (I'm 53) and no longer had to take birth control pills (I was on those for 20+ years).  I thought maybe those two things combined were causing this.  After intercourse, I would feel nauseous, dizzy, stuffy nose, sneezing.  This lasts for 4-6 hours.  I thought I was going crazy.  I read somewhere that taking Benadryl 30 minutes before intimacy would help, and it does, but just a bit.  Sure would like to find out more info. on this subject for women."

https://en.wikipedia.org/wiki/Combined_oral_contraceptive_pill#Formulations

https://en.wikipedia.org/wiki/Birth_control_pill_formulations

See second paper treatment: https://poiscenter.com/forums/index.php?topic=3551.0

"Norethisterone, also known as norethindrone and sold under many brand names, is a progestin medication used in birth control pills," https://en.wikipedia.org/wiki/Norethisterone

I think she did not develop POIS at that age but surpressed it by the use of birth control pills all along. 20+ years means age <33 years. My aunt's symptoms got worse at age ~30 according to my mother, she (and my mother) also felt better during pregnancy which is when progesteron rises. Now benadryl helps Giggly which could indicate mast cell involvement. Stimulation of the progesteron receptor on mast cells inhibts the mast cell. Inhibition of mast cells means that you only inhibit a certain subset of mediators. This can differ from person to person meaning different receptors need to be adressed for different meta-patterns. If my aunt's case has a genetic origin then norethisterone might work for me.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on November 09, 2020, 04:28:30 PM
My aunt's symptoms got worse at age ~30 according to my mother, she (and my mother) also felt better during pregnancy which is when progesteron rises.

"The systemic increased size of the CD4+CD25+ Treg population during pregnancy may underlie the gestational alleviation of some autoimmune diseases; these diseases often relapse after birth in mice and humans"

Progesterone Increases Systemic and Local Uterine Proportions of CD4+CD25+ Treg Cells during Midterm Pregnancy in Mice (https://academic.oup.com/endo/article/151/11/5477/2456142)

Membrane progesterone receptors in human regulatory T cells: a reality in pregnancy (https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/1471-0528.13294)

Which is what happened, they relapsed after birth. Temporary alleviation during pregnancy.

Two poisers who tried progesterone (P4)/norethisterone felt worse, they also expressed low Testosterone levels (Heather and Demo). T can expand Treg numbers just like IL-2. Norethisterone can elevate SHBG depending on dose and thus lower free T, so these folks may feel bad.

TRT:
Androgen receptor modulates Foxp3 expression in CD4+CD25+Foxp3+ regulatory T-cells (https://www.molbiolcell.org/doi/full/10.1091/mbc.E14-08-1323)

But the half-life of Tregs is in the order of days I believe. The effect should persist some time.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on November 21, 2020, 07:03:05 AM
Mallory (https://www.thenakedscientists.com/forum/index.php?PHPSESSID=ptq3bd0gu41qvcoq6e09uoddq5&topic=14697.msg177763#msg177763):

"During and immediately after orgasm, from intercourse or masturbation, I get  body and joint aches, neck stiffness, throbbing headache and nausea. This also happens when I perform oral sex on my husband, that does not result in an orgasm on my end.   It's the worst for several hours but the flu like symptoms will last for days."

These two scenarios are leading to similar symptoms:

1) Orgasm from masturbation
2) Oral sex without having an orgasm on her end

Sounds like an 'abnormal' endogenous process due to orgasm that can be triggered by an exogenous substance, in this case semen.

Concentrations and significance of cytokines and other immunologic factors in semen of healthy fertile men (https://academic.oup.com/humrep/article/22/11/2928/653931)

Discussion of semen content:
Manifestations of immune tolerance in the human female reproductive tract (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3570961/)

From the first paper about high concentrations:

"High concentrations of IgG and IgA were detected in all samples. IgG concentrations were significantly higher than IgA concentrations (P < 0.0001). Likewise, two multifunctional growth factors, transforming growth factor-b1 (https://en.wikipedia.org/wiki/TGF_beta_1) and interleukin (IL)-7 (https://en.wikipedia.org/wiki/Interleukin_7), and three chemokines, stromal cell-derived factor-1a (https://en.wikipedia.org/wiki/Stromal_cell-derived_factor_1), monocyte chemotactic/chemoattractant protein-1 (https://en.wikipedia.org/wiki/CCL2) and IL-8 (https://en.wikipedia.org/wiki/Interleukin_8), were present in high concentrations in all samples (medians >1000 pg/ml)."

"TGF-a1 (https://en.wikipedia.org/wiki/TGF_alpha) is present in extremely high concentrations in human seminal plasma. Seminal plasma contains more active TGF-a1 (1 ng/ml) than do other body fluids including blood plasma and breast milk"

Switching to men for a moment:
"TGF-a1 is thought to be synthesized in latent (inactive) form primarily in the prostate; following ejaculation, seminal TGF-a1 may be converted to its active form in the female tract by the acidic vaginal pH, or enzymes found in seminal plasma."
Ejaculation activates these growth factors whatever that means.

From second paper:

"Human seminal plasma contains very high concentrations of prostaglandins when compared to other bodily secretions. It is now apparent that PGE2 (https://en.wikipedia.org/wiki/Prostaglandin_E2), 19-hydroxyprostaglandin E1 and 19-hydroxyprostaglandin E2 are the three major prostaglandins in human seminal plasma, each being present in millimolar concentrations. Since these lipid mediators often manifest their effects in the uM to nM concentration range, virtually all pathways that are affected by these lipids are operating under saturating conditions in human semen."
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: nanna1 on November 26, 2020, 03:02:36 AM
...Sounds like an 'abnormal' endogenous process due to orgasm that can be triggered by an exogenous substance, in this case semen...

...From second paper:
"Human seminal plasma contains very high concentrations of prostaglandins when compared to other bodily secretions. It is now apparent that PGE2 (https://en.wikipedia.org/wiki/Prostaglandin_E2), 19-hydroxyprostaglandin E1 and 19-hydroxyprostaglandin E2 are the three major prostaglandins in human seminal plasma, each being present in millimolar concentrations..."
I think it's the prostaglandins in the semen that cause this. Or it could be caused by the polyamines (spermine, spermidine).
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on November 26, 2020, 01:48:50 PM
Or it could be caused by the polyamines (spermine, spermidine).

Food contains polyamines. I wonder whether the food sensitivies seen in POISers could be related to defects in polyamine metabolism.

Polyamines in Food (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6637774/)

Polyamines in Gut Inflammation and Allergy (https://www.researchgate.net/publication/221704843_Polyamines_in_Gut_Inflammation_and_Allergy)
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on December 02, 2020, 08:44:49 PM
Or it could be caused by the polyamines (spermine, spermidine).

Metabolic and Epigenomic Regulation of Th17/Treg Balance by the Polyamine Pathway (https://www.biorxiv.org/content/10.1101/2020.01.23.911966v1.full.pdf)

Sam-e plays a role as well.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on December 05, 2020, 08:05:39 AM
I used to be sick pretty often too, which I later found out was caused by a food intolerance (a very bad one, almost an allergy) to soy.

https://www.celiac.com/articles.html/gluten-and-cross-reactive-foods-r4903/

My mother has IBS, I wonder if she's the one who carries the "POIS gene" in our family if this turns out to be indeed genetic. It would be great if researchers could indeed pinpoint a gene that causes this, but with how little research is being done...

https://scholar.google.com/scholar?hl=nl&as_sdt=0%2C5&q=IBS+genetics&btnG=
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: IronFeather on December 05, 2020, 08:32:45 AM
I used to be sick pretty often too, which I later found out was caused by a food intolerance (a very bad one, almost an allergy) to soy.

https://www.celiac.com/articles.html/gluten-and-cross-reactive-foods-r4903/

To follow up on this, maybe this long episode I had could damage the gut bacteria or throw it out of balance, causing problems in the development or functioning of the vagus nerve?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on December 05, 2020, 08:39:17 AM
To follow up on this, maybe this long episode I had could damage the gut bacteria or throw it out of balance, causing problems in the development or functioning of the vagus nerve?

Or the core problem lies within the GI tract. The vagus nerve may try to counter microbiome shifts. The adjustments made by the VN may be accompanied by inflammation, the inflammation is there to fight something but could damage the host as well in the process. Gut problems affect the brain as well and can lower serotonin leading to an equivalent of male premature ejaculation. Gut-brain axis.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on December 05, 2020, 08:52:25 AM
Yes many had improvement on gluten-free (+diary free) diets despite negative coeliac/gluten sensitivity tests. I will post something in the thread for women.

That's interesting, I wonder if some gut dysbiosis is indeed at play. The vagus nerve is greatly regulated by gut bacteria, this could be something... right before I developed POIS (a year before or so), I had 4 months of constant diarrhea due to a soy intolerance that I hadn't yet identified, maybe this could influence the development of the vagus nerve in a negative way somehow? Hmm...

I wish I could participate in the POIS study, but I can't travel to the US for that :(

I told her they excluded women from the study:

Wow, I didn't know they had excluded women... sounds totally stupid to me too. But then, it's not too surprising, since POIS is still presented as a male-only syndrome in some scientific papers. I wonder why the enormous difference in the amount of male patients and female patients... do women speak about it less? Does it affect something that is very developed in men and much less developed in women, like prostatic tissue, testosterone...? Or could it only affect women with some typically-male characteristics? I wonder.

I agree, it's stupid. It's far more prevalent in men plus women are speaking less about it, especially on a male dominant forum. Men are more prone to infection and women to autoimmune disease. Also, I gave another reason for this somewhere in this thread which is mast cell related. In men there is additional activation upon orgasm within a certain area of the brain that isn't happening in women. That area could be of interest for research.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: berlin1984 on December 06, 2020, 02:15:03 PM
Wow, I didn't know they had excluded women... sounds totally stupid to me too. But then, it's not too surprising, since POIS is still presented as a male-only syndrome in some scientific papers. I wonder why the enormous difference in the amount of male patients and female patients... do women speak about it less?

In my opinion, it's because POIS is (basically) CFS in women. Not my own conclusion, but I found it on the internet and think it's very intriguing (https://poiscenter.com/forums/index.php?topic=2683.msg35064#msg35064)..
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: IronFeather on December 16, 2020, 05:14:53 PM
In my opinion, it's because POIS is (basically) CFS in women. Not my own conclusion, but I found it on the internet and think it's very intriguing (https://poiscenter.com/forums/index.php?topic=2683.msg35064#msg35064)..

Hmm, chronic fatigue syndrome? I doubt it, at least in my case. Maybe POIS can cause CFS, I could believe that, since I've developed symptoms that match CFS, but that only happened this year and I've had POIS for 12 years already. And it happened as a result of exposure to bleach, I had a terrible reaction for some reason and developed exercise intolerance. I think I should add that story to this thread, I'll do it in another post.

But before that... I've always had an immense amount of energy, and I used to train martial arts and calisthenics, always jumping from one activity to another. It doesn't seem possible to me that POIS could be CFS in my case at all.

Anyway, maybe I have it now? Who knows. When I was exposed to bleach I had episodes of complete lack of strength and total depletion of energy, even lifting a spoon was an effort. But now I feel fine, even when I'm left with exercise intolerance... (and I would give almost anything for it to disappear).
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Hopeoneday on December 16, 2020, 06:22:29 PM
Hi IronFeather.
I hawe (big in pois) hi chemical intolerances, parfumes etc...
I remeber as a teeneger wehen i cleaned moldy in room with bleach ,
that did give me lungs colapsing reaction, cant tolerate it for one second.

My mother is obsessed with cleaning, and for years I did have to convincing her to
 that she "poisoning me, us" in house with all those chemicals.
Now she use more natural cleaners and less chemicals.

When i am in full blown pois mode, brochoconstriction in thouse mode,
put bealch fumes on that, uffffffff, disaster.

Autosugestion and newer giwe up mode(fighting mode) keep me in life.

Cfs , exsercise intolerance is my big isue and life destroyer.
Small dose coffe help a lot.
Taurine one two grams help.
Zma , zink magnesium help.
Try some b complex vitamines.
C vitamine help.
Check yours vitamine D.
Some high quality multivitamine...
Check yours diet eg food intolerances...

Did you checked yours thyroid?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on December 17, 2020, 12:43:53 PM
I've had blood tests done multiple times during my worst fever episodes, and everything comes back normal except for very low levels of iron (I usually have normal or even high iron and hemoglobin levels), and through-the-roof amounts of C-reactive protein. This led doctors to think I could have mononucleosis or some kind of bacterial infection, but all specific tests came back negative. They put me on antibiotics anyway, and that solved most symptoms almost immediately and made me able to get out of bed and finally get better during the worst episode I've ever had. That's why I've always thought it must be some kind of infection by some pathogen, even when I used to believe an autoinmune reaction must be the cause. Now I don't even know what to believe or what to do.

Intracellular iron regulation, infections and the effect of LPS endotoxins (https://forums.phoenixrising.me/threads/intracellular-iron-regulation-infections-and-the-effect-of-lps-endotoxins.53819/)

"Withholding iron from potential pathogens is a host defense strategy."

"As alluded to earlier, iron is essential for the survival and growth of almost all organisms. Furthermore, an important strategy of mammalian antimicrobial defense is based on depriving pathogens of this essential nutrient"
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Hopeoneday on December 17, 2020, 01:57:44 PM
https://poiscenter.com/forums/index.php?topic=2788.msg25238#msg25238
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on December 22, 2020, 12:57:58 PM
Perhaps the most relevant aspect of the neuroregulatory aspects of gonadal steroids in neurosomatic disorers is that “estradiol enhances and testosterone attenuates novelty stress-stimulated increases in c-Fos mRNA in the hippocampus, with presumed consequent alterations in the transcription regulatory effects of c-Fos” (Roca CA et al., 1999).

Hi guys! I missed a post from earlier above with some questions. Sorry about that.  Before POIS yes I always had an extremely high libido. More than any boyfriend or husband I ever had. Although since it started making me feel so bad sex is the last thing I want to do.

I'm somewhat always stressed due to running my own business and taking care of my family.

I have done 3 hormone tests over the last year. All were when I was not symptomatic. All showed very high estrogen and non-existent testosterone. I will be happy to upload those here if that's possible.

I did show on one of the test my cholesterol was a little high which shocked me a lot.  My last test a few weeks ago showed low vitamin D which also shocked me considering I literally take a vitamin D pill every day and I'm outside a good bit.

I have been experiencing this for about 4 or 5 years now and the symptoms have gotten considerably progressive worse over time.

Anyway, I can round up all of my blood test and upload them if anybody wants.

Antihistamines, Serotonin supplements (which ones?) and NSAIDs did not work for her. However TRT works. She felt awful on progesterone.

Well I don't have 2 heads (thank God because headaches on 1 head is enough!!!) But I am one that gets severe headaches after sex.  It is all over my head. It is not in one spot. In the past it would start out like my head felt deprived of oxygen or something and was very dull achey brain foggy confused feeling. It almost felt as if my brain was burning.

Endothelin release--->vasoconstriction? Cerebral hypoperfusion? Hypoxia?
https://poiscenter.com/forums/index.php?topic=2545.msg38274#msg38274

https://en.wikipedia.org/wiki/C-Fos
"It is involved in important cellular events, including cell proliferation, differentiation and survival; genes associated with hypoxia"

"It plays an important role in many cellular functions and has been found to be overexpressed in a variety of cancers."

15) My two grandmothers died from breast cancer, and one of my grandfathers died of prostate cancer, but apart from that, the only health problems I can think of in my family are the endless digestive problems of my mother. She's been diagnosed with irritable bowel syndrome and lactose intolerance, but her troubles only appeared after the emotional turmoil of her relationship with my physically abusive father, so that might explain her issues.

Also seen in MCAS: https://poiscenter.com/forums/index.php?topic=2755.msg32997#msg32997
Argument of MCA can also be made in case of Heather's high estrogen which is a potent mast cell activator.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on December 24, 2020, 11:06:26 AM
Ironfeather could prevent her symptoms from getting worse by exercise. It is known that BDNF increases during exercise. Does she have low (serum) BDNF just like my brother?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Iwillbeatthis on December 24, 2020, 03:12:15 PM
Ironfeather could prevent her symptoms from getting worse by exercise. It is known that BDNF increases during exercise. Does she have low (serum) BDNF just like my brother?

Agmatine sulfate increases BDNF and eNOS, I ordered some and it came today so I will test it out
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on December 25, 2020, 03:54:38 PM
Antihistamines, Serotonin supplements (which ones?) and NSAIDs did not work for her. However TRT works. She felt awful on progesterone.

https://forums.phoenixrising.me/threads/dr-jay-goldsteins-rapid-remission-me-cfs-treatments.34516/page-6#post-582561

Ketamine antagonism? I wonder whether viagra will work for her symptoms (brain feels deprived of oxygen, collapsing blood vessels?).

Agmatine sulfate increases BDNF and eNOS, I ordered some and it came today so I will test it out

https://en.wikipedia.org/wiki/Agmatine#Mechanisms_of_action

(https://upload.wikimedia.org/wikipedia/commons/b/bf/Wikipedia-Agmatine_Metabolic_Pathways.jpg)
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: demografx on December 25, 2020, 07:30:50 PM
Muon, I love your technical graphics!
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on December 27, 2020, 09:37:12 AM
Dopa responsive headache: Restless head syndrome or a cephalic variant of restless legs syndrome? (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7586588/)

Headache and restless legs syndrome responded to levodopa. Does TRT therapy helps Heather because it affects dopamine somehow (or MCs)? Low T is a risk factor for endothelial dysfunction. Endothelium might not respond properly to orgasm. Low Dopamine levels? Or slow conversion to norepi? Or norepi repsonse is exaggerated?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on December 29, 2020, 12:42:42 PM
That is interesting. When I was a child I was prescribed 20 days of penicillin injection, is it considered over-prescription?

What was the reason for the prescription?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on December 30, 2020, 03:49:15 PM
Timestamp 16:19 POIS discussion: https://youtu.be/rFiehQLjPpk?t=979

Timestamp 43:32 potential POIS extension study in women?: https://youtu.be/rFiehQLjPpk?t=2612
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on January 06, 2021, 05:00:50 PM
I also have thalassemia minor.
"Due to its immunomodulatory,[17] iron chelating and antioxidant properties, this herb has the potential to be used in beta-thalassemia patients who receive regular blood transfusions and suffer from iron overload" https://en.wikipedia.org/wiki/Silibinin

https://en.wikipedia.org/wiki/Thalassemia#Beta-thalassemia

"Infection: People with thalassemia have an increased risk of infection."

Males are more susceptible to infection compared to women...except when there is an underlying condition.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Iwillbeatthis on January 18, 2021, 08:21:32 AM
I remeber as a teeneger wehen i cleaned moldy in room with bleach ,
that did give me lungs colapsing reaction, cant tolerate it for one second.

My mother is obsessed with cleaning, and for years I did have to convincing her to
 that she "poisoning me, us" in house with all those chemicals.
Now she use more natural cleaners and less chemicals.

I had a bit of black mold on the edges of my bedroom windows between the glass and window frames, I've been meaning to clean it for ages but you need to kill mold with white vinegar, hydrogen peroxide. If you use bleach it doesn't kill the roots of the mold and actually releases dangerous mold spores into the air. I still have a bigger mold problem in my ensuite bathroom but I have stopped using that bathroom for months now because of it until its sorted.

Let's see if it has any effect on how I feel when I wake up in the mornings. Every morning I have to clear my throat of phlegm and sometimes it has blood in it, can also have brain fog and more rarely allergies.

If it doesn't then it must be to do with what I'm eating for dinner.

When I saw the functional medicine practitioner at the start of last year he thought I had mold toxicity based on my symptoms. He put me on a protocol for mold toxicity with binders like bentonite, charcoal and liposomal glutathione for detox. It was definitely needed for a month to start functioning properly again ,I felt ill and had brain fog all the time before but this protocol had no effect on my POIS or reactions to showers. Bentonite was probably the best thing from it which I still use from time to time, it can bind to yeast, heavy metals, mold in the gut. My stools improved a lot.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on January 19, 2021, 09:57:01 PM
I'm in the middle of exams again and things are stressful. I don't even understand my own symptoms anymore. I used to take vitamins B and never had any problem with them, and now, after the bleach exposure, I can't tolerate them, they give me POIS symptoms - plus a killer headache and insomnia. And it seems that my main symptom, fever, is gone, I never get it anymore, not even after an orgasm.

Recognition and Management of Medication Excipient Reactivity in Patients With Mast Cell Activation Syndrome (http://sci-hub.se/10.1016/j.amjms.2019.03.005)
"After starting college, he reported increasing headaches and insomnia, and he wanted to resume nortriptyline, which he took in the past with improvement in these symptoms"

It's probably the stress that makes you susceptible to new potential triggers. What I observed over the years for my own case, is that, stress is relatively strong at lowering the threshold for reactivity to other triggers and amplifies ongoing reactions.

Perhaps fever went away after the exposure to bleach? Did something happen to the methylation cycle regarding reactions to B vitamins?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on February 08, 2021, 03:38:04 PM
Wow, I didn't know they had excluded women... sounds totally stupid to me too. But then, it's not too surprising, since POIS is still presented as a male-only syndrome in some scientific papers. I wonder why the enormous difference in the amount of male patients and female patients... do women speak about it less?

In my opinion, it's because POIS is (basically) CFS in women. Not my own conclusion, but I found it on the internet and think it's very intriguing (https://poiscenter.com/forums/index.php?topic=2683.msg35064#msg35064)..

Mono--->CFS--->CFS went away---> stuck with POIS.
Age 25: Mono
Age 25-27: CFS
Age 27-29 and beyond: POIS but no CFS
https://www.thenakedscientists.com/forum/index.php?topic=14697.msg344849#msg344849

Something happened between the disappearance of CFS and onset of POIS. Some modulation.
Infection of vagus nerve? Could the latter modulated the microbial composition of the GI tract leading to an altered immune response upon orgasm?
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Iwillbeatthis on February 10, 2021, 01:06:18 PM

2) No, I was very young when I first masturbated, less than 3 years old. I used to do it very often as a kid, probably daily, unless I was sick. I used to be sick pretty often too, which I later found out was caused by a food intolerance (a very bad one, almost an allergy) to soy.

Wow this is crazy I didn't know kids that young ever did that.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on February 10, 2021, 01:10:36 PM
Wow this is crazy I didn't know kids that young ever did that.
Probably a typo. I guess it's 13.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Iwillbeatthis on February 10, 2021, 01:15:53 PM
Probably a typo. I guess it's 13.

I thought the same at first but she did say "really young" and as a kid, Iron feather can you clear this up lol.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on February 16, 2021, 12:37:45 PM
Female premature orgasm: Does this exist? (https://sci-hub.se/10.1016/j.sexol.2011.08.008)
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on February 19, 2021, 03:46:41 PM
Dawndollygolden
https://www.reddit.com/r/POIS/comments/ln4lai/female_pois_symptoms/

Female POIS Symptoms

I know that women are few and far between on this sub, but as a woman I would like to bring light to some of the symptoms I face with POIS. I have debilitating POIS. One orgasm can trigger up to a month of symptoms that mimic bipolar disorder and premenstrual dysphoric disorder. Abstaining from orgasming is the only cure I've found so far. While practicing abstinence all of these symptoms disappear. But here are the symptoms I find most noticeable.

MENTAL

General brain fog
Decreased ability to stay focused (ADD like symptoms)
Becoming significantly more disorganized

EMOTIONAL

Anxiety
Manic Depression - rapid swings between high risk behaviors (drinking, unprotected sex, drugs) and paralyzing sadness
Irritability
Urges to have angry outbursts
Apathy towards romantic partner
Decreased patience with my child
Suicidal thoughts (usually occurs after multiple orgasms in succession)
Increase of nightmares
Crying- so much nonsensical crying

PHYSICAL

Extreme fatigue
Insomnia
Allergy symptoms
Watery eyes
Sneezing fits
Itchy skin
Runny nose
Increased appetite
Bloating
Back pain
Vaginal odor
Increased vaginal discharge
Acne break outs
Worse menstrual cramps
Increased menstrual bleeding
Weight gain
Increase of yeast infections and bacterial vaginitis
Increase of UTIs
Constipation
Trouble regulating body temperature (especially feet)
Severely decreased libido
Vaginismus symptoms

So far for treatment I have tried Vitamin D, Vitamin C, Caffeine, antihistamines, Kratom. None of these have helped me.

glintglib:
"I have some questions for you.... Did you have POIS from the first time you started having sex or further along in time? If it is the latter can you tie it in to any substance, drug or other event going on in your life at the time? Have you had your hormone levels tested the day after an O? Hmmm you have increased appetite and weight gain. I have the opposite problem. Yes women are few and far between which has always intrigued me, what is different about those that do. If it is say a gut microbiome issue then women should be just as common as men with POIS."

dawndollygolden:
"I can't pinpoint a start date, but I've experienced bipolar symptoms and chronic fatigue ever since I was in high school. I have masterbated since I was 13 (and during my teen years definitely experienced porn addiction- which is my theory on what may have created a hormonal imbalance). I did not actually have sex with a partner until 23, and that sex rarely gets me to an O. After abstaining from masterbating I began to realize I felt like an entirely different person. That made me really begin questioning the source of my chronic fatigue.

I have had blood work done and hormonal levels checked- all were normal. I have not had them checked immediately after an O. I can say that my emotional symptoms were non-existent during my pregnancy, although the physical and mental stayed.
"
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on March 23, 2021, 12:01:40 PM
Posting this here, could be helpful to others.

I haven't been around much because I've been sick with POIS again, with crazy tachycardia and general weakness. I tried to start slowly exercising again and it was a disaster, I spent two weeks with a fever afterwards. I'm going to get a blood test done on Thursday, and I just realized that maybe you could recommend me something I could ask my doctor to test for. Is there anything specific that tends to come up wrong in the blood tests of people with POIS? I'm tired of doctors believing it's all in my head because all the parameters always come back perfect.

I've been reading old posts here and came across nanna1's theory about herpes and POIS. It fits what I think about POIS being some kind of infection in the nervous system.

Nanna made a small compilation: https://poiscenter.com/forums/index.php?topic=2695.msg24788#msg24788
Result thread: https://poiscenter.com/forums/index.php?topic=2684.0

If you think infection plays a role then you may want to investigate Th1/Th2 balance (IFN-g/IL-4): https://poiscenter.com/forums/index.php?topic=3717.0
(Cytokine panels could be checked for a disordered cytokine profile, see examples in thread above, fever is probably induced by cytokines)

POIS theories: https://poiscenter.com/forums/index.php?topic=3744.0
Ideas regarding parameters in the comment section: https://poiscenter.com/forums/index.php?topic=3207.0

SIBO test can be done if you suspect an overgrowth: https://poiscenter.com/forums/index.php?topic=3385.0

MCAS testing: https://poiscenter.com/forums/index.php?topic=3236.0

Options regarding the tachycardia:
-Alpha or beta adrenergic receptor autoantibodies (nobody has done these yet, seen in CFS and POTS patients):
https://poiscenter.com/forums/index.php?topic=2219.msg39210#msg39210
https://poiscenter.com/forums/index.php?topic=2219.msg39229#msg39229
-Increased plasma norepinephrine (measurement between laying down and standing position reveals increase)

VEGF if blood brain barrier permeability is increased and things are leaking through.

Your doctor probably don't got these tests. Btw if your Th1/Th2 balance shows a Th1 polarization it can mean you can have autoantibodies(virus can induce this, the Th1 response is due to viral infection) and probably of the adrenergic type since you got tachycardia see learner1 from CFS forum.

I would do a cytokine test including Th1/Th2 balance if you ask me.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on March 25, 2021, 08:45:43 AM
Thanks a lot for all the info and for taking the time to put all of this together, the forum is a bit scattered sometimes and I hadn't found most of these things.

I had my blood test done today, I'll upload my results (and previous ones too) as soon as I have them. They couldn't test for some of the parameters I wanted, but I managed to convince my doctor to ask for all vitamins B, A, C and D, as well as IgG and IgM antibodies for all types of herpes, and the TH1/TH2 ratio you mentioned.

Forum is indeed scattered. Rule of thumb: Pinned threads contain the most relevant information including comment section. Th1/Th2 in combination with herpes...oke, let's wait and see.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Prospero on March 25, 2021, 09:43:26 AM
Nice, thank you IronFeather. I wish more people could convince their doctors to do more specific blood tests of this kind. It's a shame that most of them keep asking only for the standard and irrelevant stuff which never shows anything interesting.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on March 25, 2021, 03:22:32 PM
Ironfeather has quite some cases of cancer in her family. IDO is overexpressed in cancer. IDO inhibits natural killer cell function. It might be a problem in viral infection where you need intracellular clearing. Increased Interferon gamma in response to a viral infection could work against you if IDO is overexpressed (not in individuals with normal IDO numbers), in that it upregulates IDO so that inhibition of NK function dominates. Like a trap. Just wanted to throw this out there before i forget it. Tryptophan could be low as a consequence.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: IronFeather on March 27, 2021, 10:43:35 AM
I just created a thread with all the info about my case, I'll update it along the way, and soon I'll add the results of my previous blood tests.

https://poiscenter.com/forums/index.php?topic=3765.msg40013#msg40013
 (https://poiscenter.com/forums/index.php?topic=3765.msg40013#msg40013)

The lab did a disaster with this test though, they didn't take enough blood to analyze everything they needed, and for some reason they didn't even upload the TH1/TH2 to the results page, and only the HH1 and HH2 are showing (but not the HH3, 5 or 7, which my doctor also asked for). I'm trying to figure out what's happening, but maybe they don't have the equipment to test for these parameters...
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on April 19, 2021, 10:59:11 AM
Among hormones, estrogens, glucorticoids and thyroxine are the best characterized modulators of the KP. Estrogens enhance TDO activity; enzyme activity is triplicated in women who are pregnant or are taking oral contraceptives Ref (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6412771/)

https://www.thenakedscientists.com/forum/index.php?topic=14697.msg478002#msg478002

Giggly:
"I truly thought I was the only woman alive experiencing this.  For me, this all started AFTER menopause (I'm 53) and no longer had to take birth control pills (I was on those for 20+ years).  I thought maybe those two things combined were causing this.
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on April 27, 2021, 07:14:07 AM
Another female:

https://www.reddit.com/r/POIS/comments/mt1ehn/does_anyone_know_what_treatment_for_women_would_be/

"does anyone know what treatment for women would be?

I have all of the debilitating symptoms of POIS. i assume i have high testosterone and thats why this is happening but am not certain
"
Title: Re: Women with Post Orgasmic Illness Syndrome
Post by: Muon on April 27, 2021, 08:20:58 AM
https://scholar.google.com/scholar?hl=en&as_sdt=0%2C5&q=estrogen+intestinal+inflammation&btnG=

Estrogen seems to be protective against intestinal inflammation. Could this explain the male/female ratio in POIS? What about females that do have normal to high estrogen and still got POIS? Could they have reduced expression of estrogen beta receptors. Impaired estrogen signaling?

https://www.thenakedscientists.com/forum/index.php?topic=14697.msg478002#msg478002

Giggly:
"I truly thought I was the only woman alive experiencing this.  For me, this all started AFTER menopause (I'm 53) and no longer had to take birth control pills (I was on those for 20+ years).  I thought maybe those two things combined were causing this.

Estrogen and microglia:
https://scholar.google.com/scholar?hl=en&as_sdt=0%2C5&q=estrogen+microglia&btnG=

Testosterone and microglia
https://scholar.google.com/scholar?hl=en&as_sdt=0%2C5&q=testosterone+microglia&btnG=