Women with Post Orgasmic Illness Syndrome

[nanna1]

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)

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 They do not cite any POIS literature.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)

  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!

[demografx]

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.

[Muon]

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."

[Muon]

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

I bet the soy did something to her intestinal MC numbers, function or phenotype.

[Muon]

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

More about mast cells and cancer:
Page 14/24 Cancer and Tumor Progression

[nanna1]

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.

[demografx]

nanna1, thank you

[Timtim]

@ 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.

[marrtintintin]

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.

[Muon]

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

[Muon]

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."

[berlin1984]

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)

[Nas]

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]

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]

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]

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]

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]

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

[ThisType]

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]

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.