Women with Post Orgasmic Illness Syndrome

[Muon]

https://www.reddit.com/r/POIS/comments/10vt0c7/just_a_girly_with_pois/

Hey hey everyone. I found this sub after sporadically looking into POIS for what feels like the thousandth time. I have found it so helpful and almost cathartic in a way knowing that I am gonna be okay and I'm not alone in the way I'm feeling.

With that said, I think this is gonna be a long post because I wanted to come on and share my symptoms and other info as well as things I hope to try moving forward to help feel better.

So I'll start with my symptoms (I am 25F btw):

I am legitimately so horny all the time, especially when I'm ovulating. Having an orgasm only makes it worse

After I orgasm...
I get so anxious and sometimes have panic attacks
I get extremely flushed (my face gets so red and hot) and I get really sweaty
I get horrible brain fog and fatigue. It seriously feels like I'm in a dream and can't do anything
I get super shake-y and weak
My muscles get super tight and sore
I get the worst lack of motivation. I literally cannot be bothered to do anything
I get nauseous and just generally have other mild flu like symptoms
I get bloated

My symptoms last for a range of time. They are really bad for about 8 hours and then linger a little less intense for what feels like days/weeks

Other stuff:
I am diagnosed with ADHD, POTS, CPTSD
I have taken adderall on and off since I was 18
My doctor is looking to diagnose me with Ehler's Danlos but it is not an official diagnosis yet
I am very vitamin D deficient
I have had Covid twice in the last 18 months
As far as I can remember I have experienced the symptoms above since I was 18ish although it has gotten exponentially worse over the last few years

If I really reflect, I can pinpoint when the symptoms got wayyyy worse to the same time when I started experiencing my POTS symptoms; this being after bad emotional trauma from an abusive relationship. I'm not sure if there is a link here between prolonged trauma and autonomic nervous system/dysregulation?

So far I haven't actively tried anything for long term treatment however I do take a very small dose of Xanax (0.25mg) when I am having a particularly bad POIS attack and it helps tremendously.

I'm hoping to try the following stuff and stick to it to try to get this under control and get my life back:
daily Vitamin D and Vitamin B supplements
staying very hydrated
stop masturbating
I plan to come back with updates to hopefully help anyone else on here even if it's just a little bit!

[Hopeoneday]

From youtube coments:
For she, pois started after implant( infection, hormonal, imunyty,
alergy on implant ingredients=pois )
AshleyCerullo
3 years ago
 @LoveOpenly  I'm pregnant now so I have no issues except when I get off. Then I'm down for about 3 days in agony. Migraines so bad I think about suicide! My reactions would get super intense right before my period and I'd become suicidal. Then a couple days later felt perfectly normal. Almost signs of bipolar but it's something more! It all happened a month after they gave me a birth control implant. I went from being a normal healthy woman to losing my mind and became allergic to all medicine and foods. Happened overnight. My husband said it's def my hormones

[Progecitor]

Another possible explanation for the pregnancy paradox:

The results were similar to what the telomeres indicated: The more pregnancies a woman went through, the "older" her epigenetic age.
Paradoxically, Ryan, Eisenberg and their colleagues found that if a woman was pregnant at the time the measurements were taken, she looked epigenetically "younger" than expected. However, they did not find the same effect when they looked at telomere length.
"Why would a woman look epigenetically younger during a pregnancy and epigenetically older after multiple pregnancies?" Ryan said. "Could it be that mom's blood is getting contaminated with baby's blood, or cells of baby's blood, and if so is this an artifact of that?"
https://www.washingtonpost.com/health/do-pregnancy-and-childbirth-accelerate-aging-in-women-maybe/2019/10/18/635dbd7c-e516-11e9-b403-f738899982d2_story.html

[Muon]

https://www.reddit.com/r/POIS/comments/13yean0/woman_with_this_hellish_condition_ugh/

Quote from reddit poster:
”So after some careful process-of-elimination, I'm now as certain as one can be that this is the cause of my multi-day episodes of severe fatigue, sinus drainage, acid reflux, nausea, lower back pain, dizziness & all-over illness.

I really REALLY didn't want it to be this but there's no denying it now. I've eliminated all other possible causes: a skin cream I was using, a medication I was taking & some other things. Even took some antibiotics in case it was a kidney infection. No improvement. Symptoms set in immediately after completing the act & can last days to over a week depending on how long "the act" took/how intense it was. I always wash my hands right before & after and even take a bath immediately following in case UTI is a factor. No effect.

The nausea is so bad I have to take Zofran sometimes but the fatigue is the worst part: if a tornado was coming, which I thought it was the other day, I'd just have to blow away with it because I canNOT get up, even after taking multiple Adderall pills. I'm breathlessly exhausted & nothing helps. I just slept a whole night, day & another night before typing this.

I suspect COVID/long COVID played some role in screwing up my immune system because this just started abruptly after a bout of it. (COVID is known to [decimate T-cells] (https://www.frontiersin.org/articles/10.3389/fimmu.2022.931039/full) like HIV does, only not in a progressive way that kills you). I'm also battling a treatment-resistant scalp ringworm infection that's lasted almost a year. Taking griseofulvin for it. Again, I refer back to COVID as a major factor in that because healthy young adults shouldn't get scalp ringworm--it's a disease of childhood or menopausal women with hormonal/immune issues. My blood glucose was low the other day despite not fasting which was the 1st time that's ever happened. No idea if that's related to the POIS.

I'd feel somewhat better if I understood the actual mechanism behind this condition. Is it an allergy to one's own fluids? If so, you'd think you could somehow desensitize yourself gradually... or something. Meh. It's too humiliating and far-fetched to even tell anyone about, but my family is getting concerned about all the sleeping. Guess I'll have to become a nun/eunuch lol ugh.

If you made it this far, thanks 4 reading.”

[berlin1984]

One more woman in our forum:Unluckiest_Lady_Alive
https://poiscenter.com/forums/index.php?topic=4369

Welcome to the forum!

[Muon]

https://www.reddit.com/r/POIS/comments/145qg4x/strength_training/

Moonshadows16:

I have noticed a significant improvement with pois since starting strength training. It also has increased my libido some where it had been non existent. During resistance exercises a cocktail of hormones is released. And I must have been needing them. I'm also noticing sharper vision, more vigor, better temperature regulation, less allergies/immune reactions in general.

Probably not a solution for everyone but has been significant for me. 31yr female

On an emotional level, getting clearer on what I'm passionate about and reigniting that.

I typically have brain fog, extreme weakness, low energy, cold extremeties, weak pulse, low heart rate, burning eyes, sore throat, flat emotions, hot flashes, higher incidence of allergic reactions to environment (makeup, food, products etc), likely to catch a cold. Orgasming will sometimes cause me to miss a period that cycle,

[Muon]

https://www.reddit.com/r/POIS/comments/147v8ps/woman_with_pois_and_havent_posted_in_a_long_time/

Heather01111:

I haven't posted in a long time. I am a woman with POIS. I thought I had found my fix for this which was testosterone supplements. It did help for a few months but then it stopped. I was so happy and then so depressed about it that I kind of gave up hope. My body started to just convert the testosterone into estrogen apparently and it quit working. What I have found though is if I don't do the testosterone cream everyday and I only use it after sex along with an oxytocin nasal spray my headaches/train wreck feeling only lasts for about a day or 2 instead of 2 weeks. I am still searching on the cure as my sex life still sucks and somebody should start a gofundme page for my poor husband as he has to deal with me. This is such a hard thing to have. I try to stay optimistic, but if I let mywelf go there I just feel broken as a woman.

[soulution121]

Check this out gang.

https://www.youtube.com/watch?v=IBlfrv5_LTk

Its about a woman and her research on how orgasm's in general affect most of the population for biological reasons.

I understand though we have extreme reactions to orgasms and debilitating it is to us. But this philosophy and the science behind it advocates more sex with out orgasm being the goal.

This results in greater connection, peace, serenity, heart centeredness and holistic experience.

https://www.youtube.com/watch?v=kcZ5mp1jCPY

[berlin1984]

I wonder how many of the females here have a copper IUD or use birth control pills.

See my copper toxicity thread: https://poiscenter.com/forums/index.php?topic=4402.msg47009

[Muon]

https://www.reddit.com/r/POIS/comments/1bi4f94/extreme_pois_symptoms/
Username: Adventurous-Tiger287

Extreme POIS symptoms

26F.

So, I've been waiting to post on this sub because you need your account to be a certain age...

But I've been going through absolute hell with extreme POIS symptoms.

The physical and mental symptoms are insane. But the worst are the mental symptoms like anxiety, panic, paranoia, depression, inability to have a conversation or put words together, feeling like you need rest but cannot sleep. The insomnia, burning, tingling, neuropathy, I also get back pains/bone pain, and nausea, dizziness, my hair falls out like crazy. I could go on and on but this post would take forever.

My health overall isn't doing great, and I think when I PMO on top of my already unstable health, my body can't handle it and just goes absolutely haywire. It's scary. It almost feels life-threatening because of how bad my symptoms are. I'm literally balding and getting male pattern balding on my hairline when I didn't have that issue prior. I was abstaining for 200+ days but recently broke it in February.

Last night I watched P, but didn't M or O. Still, I got symptoms, although less severe.

What the hell is going on. I'm convinced now that those scholars in the olden days that said M made you bald, lazy, and insane, were actually correct. I think this shit corrupts your physical body and mind and spirit. I don't know why. I'm not particularly religious but this is just something I've observed.

I'm going to stay on nofap for as long as I possibly can. I think abstaining is the answer for me. A good chunk of females don't M at all, or watch P, so I can too. Religious people also don't. I don't know guys and girls. This is insane. Maybe there is just a physical reason or maybe spiritual or a mix of both.

I have theories for why this happens but I don't know if they're correct. Just came here to vent and share my experience, hope that's okay.

[Muon]

“Women with Postorgasmic Illness Syndrome: Data From an International Prospective Registry”

Presented at a recent Conference by Olivia Paulsen, our University of Chicago School of Medicine POIS Research Study Coordinator

This data includes information you all provided here. More to come!


Paulsen, O1; Banton, J2; Ikedionwu, I3; Sun, J3; Bronson, I4; Raheem, O5; Pearlman, A6; Duran, MB7; Serefoglu, EC8; Rubin, R9

1 - Idaho College of Osteopathic Medicine
2 - New York Institute of Technology College of Osteopathic Medicine at Arkansas State University
3 - University of Chicago Biological Sciences Division Pritzker School of Medicine
4 - UMass Chan Medical School
5 - University of Chicago, Department of Urology
6 - Iowa State University, Department of Urology
7 - Pamukkale University, Department of Urology
8 - Biruni University, Department of Urology
9 - Georgetown University, Department of Urology

Introduction:
Postorgasmic Illness Syndrome (POIS) describes a debilitating collection of flu-like or allergy-like symptoms experienced post-orgasm. The disorder can be divided into primary or secondary subtypes, and even further into seven clusters. POIS is considered a rare, poorly understood condition that largely affects people with penises.

Objective:
To assess females’ experiences with POIS, including symptomology, treatments trialed, and sexual function via the Female Sexual Function Index-6 (FSFI-6). To also compare their experiences with men who have POIS.

Methods:
An IRB-approved RedCAP survey was created and administered in September of 2023. The anonymous survey was distributed to the following online platforms: Twitter, Instagram, email, Reddit to include r/POIS and r/SampleSize, and the POISCenter forum. The survey was closed on November 5th, 2023 and descriptive statistics were performed.

Results:
Of 424 records, nineteen indicated they have a vulva and vagina. Authors individually and thoroughly assessed all nineteen records and eliminated duplicate responses, records that did not meet any of the established symptom criteria, and incomplete responses. After this, ten records were included in the statistical analysis. Participants identified as white/caucasian (7), Hispanic/Latina (2), and Iranian/Persian (1). One of the ten respondents has been diagnosed by a medical professional. Five participants indicated that they experience a “sensation of a flu-like state.” Three experience “extreme fatigue or exhaustion.” One experiences “feverishness or perspiration.” One experiences “mood instability and/or irritability.” Providers visited for their symptoms included primary care, endocrinologist, obstetrician/gynecologist, and mental health. Treatments trialed include allergy medications, anti-depressants, prednisolone, pelvic floor physical therapy, and pain relievers (i.e., NSAIDs). Seven participants completed the FSFI-6; three had a score of less than or equal to 19 (the cutoff for female sexual dysfunction(FSD)) and four had a score of greater than 20.

Conclusions:
POIS has been viewed as a “male-only” condition. While it largely impacts men, this data suggests that women are not immune to it and when compared to men, their experiences vary. From this prospective registry, the most common symptoms experienced by women were “flu-like.” Additionally, none of the participants visited a urologist compared to 65% of men who have. While nearly 60% of the FSFI-6 respondents are not classified as having FSD, it is important to note that only one participant stated they were “very satisfied” with their sex life. More data is needed on this understudied population affected by POIS.

[Muon]

https://www.reddit.com/r/POIS/comments/1bu82n8/do_i_have_pois/
Username: yumm1110

do i have pois?

"hi! soo... i'm a female. (20 years old) and i think have pois. 3-4 weeks ago i noticed my nose looks different and my face muscles look droopy. 2 weeks ago i suddenly lost my muscles around my neck and my spine was hurting like crazy, pins and needles. 4 days ago i had stuffy nose for 2 days staright and my eyes watered too. today i have itchy throat and itchy ears. now i feel like i have muscle loss in my whole body. i have trouble sleeping also. the loss of facial muscles make me look so bad. i have diarrhea too. i masturbated almost every day in the last 1 year wich is really bad i know but i don't have a boyfriend. do i have pois or something else? help. i was always really skinny, i didn't exercise in the past 6 months because i was so depressed and going through so much shit..."

[Muon]

https://x.com/dysclinic/status/1804170078797054366

Dr. Blitshteyn commenting on this article:

I think I know what the mechanisms of POIS might be. I will discuss this during my talk for the International Society for the Study on Women's Sexual Health in the Fall.

Good study, @drrachelrubin!

https://www.isswsh.org/

[Muon]

https://www.reddit.com/r/POIS/comments/1dmsv1t/comment/l9zaxeb/
Expensive-sea6833:

I suspect this. I'm a woman with POIS, which is already pretty rare. I've thought long and hard about why I might have this condition, and I suspect that excessive masturbation and high stress in my past, starting in my childhood, is a major contributor to why I have POIS. I used masturbation as a way to relieve stress. I had a very toxic family/home life and was SA'ed when I was younger, and those are some of the things that contributed to how I came to use porn and masturbation as a stress reliever.

I also suspect that excessive masturbation messes with hormones and brain chemistry. I often think about this quote that I read somewhere, about how masturbation causes madness. We know there are many "myths" about masturbation but I think there's some truth to this one.

Maybe most people don't feel the "side effects" from masturbation because their bodies are more fortified. Maybe POIS affects those who are vulnerable. It's like going outside on a cold day with a winter coat + hat + boots, etc, vs. naked in just your underwear. The former, you would barely even feel cold... maybe just on your ears. The latter, it would be unbearable if it's really cold out, even for a few minutes outside. Perhaps many POISers are vulnerable, like the person outside in the freezing cold in their underwear. Forgive me for my rudimentary comparison, because I believe POIS is more complicated than this. But yes, I agree that excessive masturbation can be a major contributor to POIS.

[Muon]

Update from moonshadows16
https://www.reddit.com/r/POIS/comments/1eks8qj/strength_training/

I've tried many things over the years that have helped to a certain degree, but I always felt I was treating the symptoms.

I picked up weight lifting last week and experienced a dramatic change immediately. And if I continue I expect to not have pois anymore. I haven't had a strong climax like this in 10 years (they had become weak/faint). I didn't feel fatigued afterwards either.

I know a cascade of growth hormones are released from strength training and this leads me to believe my problem was primarily a hormonal deficiency/misalignment. P.s. I'm a woman

Anyway I'm very happy about this because I've suffered for about 14 years with pretty debilitating symptoms and this is a turning point for me

[Muon]

Patient shares story, see video. Sounds like hyper responsive mast cells to me.
https://www.focus.de/gesundheit/ratgeber/orgasmus-allergie-bringt-kate-in-lebensgefahr-epipen-immer-griffbereit_8419f6b6-7c1a-41f5-9845-3acd2a334f34.html
Facebook link:
https://www.facebook.com/kiis1011/videos/1525925958302003/
Edit: English article: https://www.dailymail.co.uk/femail/article-13744685/I-allergy-rare-sleeping-boyfriend-KILL-doctors-dont-believe-Heres-embarrassing-way-discovered-it.html

Translation of german article:
Orgasm allergy puts Kate's life in danger

A woman claims to have a severe allergy to orgasms. Despite her complaints, doctors remain skeptical and do not make a clear diagnosis. Her partner is understanding.

A woman named Kate describes her unusual allergy during an interview with Australian radio hosts Will & Woody. She goes into anaphylactic shock every time she orgasms and then has to use an Epipen immediately. "I can't breathe, my eyes swell, I can't see and I have to call 911," she explained.

Doctors doubt orgasm allergy and ask about latex

Kate also reported that at first she thought she was reacting to her partner's perfume. Only later did she discover a connection with the orgasm. Although she consulted several doctors, she never received a formal diagnosis. "They asked me if I was allergic to latex and other ridiculous things."

Kate complains that she often has to stop sexual intercourse in order not to endanger her life. She also always has emergency medication on hand: “When I go on vacation or am at home, there is always an Epipen to hand.” However, her partner is very understanding and supports her.

An allergic reaction after orgasm is a well-known but extremely rare syndrome. Post Orgasmic Illness Syndrome (POIS) is an allergic reaction to semen that primarily affects men. The patients react allergically to their (own) sperm and develop flu-like symptoms after a few minutes, which can last for a week.

Actually, happiness hormones are released

However, it is not known that orgasm itself triggers life-threatening symptoms. However, we know that large amounts of happiness hormones are released during climax. In particular, the concentration of dopamine and oxytocin increases significantly. However, life-threatening conditions as a result of hormone release have never been documented.

An increased concentration of hormones can be dangerous. Serotonin syndrome is a condition in which overstimulation of some receptors in the brain puts patients at risk. However, the cause of the increased concentration of the messenger substance, which is also responsible for happiness and euphoria, which leads to serotonin syndrome, is usually incorrect medication or an overdose of drugs such as ecstasy.

End of article
-----------------------------------------------------------------------------------

We had a similar case in a male patient, I have asked for an update about this one a couple of years later but never received feedback: https://poiscenter.com/forums/index.php?topic=4147.0

[Muon]

Moonshadows16, Female:
https://www.reddit.com/r/POIS/comments/1g4mqzc/here_is_my_gi_map_and_the_recommended_supplements/
Added image as attachment as well.

[sartre02]

can anyone confirm if progesterone or testosterone is the treatment for women ??

[Muon]

can anyone confirm if progesterone or testosterone is the treatment for women ??

There are no reports about it in literature. Only 1 female in this thread tried low dose TRT with success, however it stopped working after 3 months.

[Muon]

Username: No_Age1208
https://www.reddit.com/r/POIS/comments/1gmfh78/frustrated_and_sad/

Quote:

I've had this since I was a literal kid, and it has not gone away. I just assumed everyone felt like absolute garbage after orgasm until my late teen years & that I wasn't being tough enough. Now as an adult, I'm beyond over it.

How are you even supposed to find a partner with this? Do any of ya'll even date? I don't want to put someone in a dead bedroom, but orgasms have become the bane of my existence. I feel asexual now, but also so lonely.

It also sucks that all the media talks about is sex, especially sex while you're young. I've never experienced sex without this nonsense, so it's like I have to miss out on such an integral part of life. 24F and still no first kiss, but what's even the point?? A kiss eventually turns into that, and at this point I'm actually scared of having an orgasm. It's been years.

My stomach is also paralyzed, so I have to miss out on food too. Can I not have anything fun??

Tachycardia and vomiting to food - stuffy nose, swollen glands, and difficulty breathing to orgasms. What a full life this is.

Sorry, this is depressing. Just had to vent.

EDIT: also curious about if any of you have MCAS. It seems like there's just this huge connection between an immune response being out of whack to orgasms & my doctor thinks I have that.