Author Topic: Women with Post Orgasmic Illness Syndrome  (Read 7980 times)

Muon

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #90 on: June 27, 2020, 05:14:26 AM »
Heather1111:

"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."
« Last Edit: June 27, 2020, 07:53:57 AM by Muon »

berlin1984

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #91 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)
Please vote on: https://poiscenter.com/forums/index.php?topic=3386.0
(There's real science behind it, not Astrology..)

My Protocol

Nas

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #92 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.

Muon

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #93 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?

Heather1111

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #94 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.

Muon

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #95 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.

Heather1111

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #96 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.

Muon

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #97 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
« Last Edit: June 27, 2020, 03:03:08 PM by Muon »

ThisType

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #98 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.

Muon

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #99 on: June 28, 2020, 06:12:27 AM »

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 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.
« Last Edit: June 28, 2020, 06:23:33 AM by Muon »

Muon

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #100 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
« Last Edit: June 29, 2020, 05:45:46 PM by Muon »

hurray

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #101 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.

« Last Edit: June 30, 2020, 04:46:22 AM by hurray »

Muon

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #102 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.
« Last Edit: June 30, 2020, 05:42:33 AM by Muon »

Muon

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #103 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:

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

Mariapol989:

"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):

"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

"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"
« Last Edit: July 06, 2020, 02:07:05 AM by Muon »

Muon

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #104 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