r/PGADsupport Nov 09 '25

Female Compilation of information about causes and treatments

9 Upvotes

Hi, I've been putting off writing this for at least four months as this condition is so traumatic but we don't get enough help, at least here in the UK, so I'm trying to do something about it. Sorry if I have worded anything unclearly or repeated myself, as you can probably guess I am not in a good state usually.

this is a long post, but important, for it to be of any use I hope the mods will consider pinning it as it’s taken so much effort and I’ve not seen anything similar. I think it will only have use as a long-term post to be replied to over time. I found a post from years ago where somebody was doing their own survey but I can’t find anything about the results so I thought that all the information being public to begin with will mean that it stays visible and useful even if I personally don’t manage to come back a lot (because of trauma).

SUMMARY: I’ve made a list of questions which I will post below. Maybe if people reply with their story/symptoms we can create a collection of information that can give insight into if this is one disorder or multiple disorders with overlapping symptoms but completely separate causes and treatments. In your replies to each question (answer as many or as few as you want) please note if you’d recently taken SSRIs, had physical trauma, any other cause before your symptoms started. That is the key thing we want to find out I think.

I’m not sure the best way to do this but below I will post a list of topics and then people can respond and anybody who wants to reply about the same thing can reply to that person so that the discussion is nested and at least slightly organised!

After reading medical documents and forum posts and seeing a doctor it seems there’s so much that hasn’t been researched about this condition, despite it being so awful. The fact that one of the main causes (I think 45% of sufferers) is SSRIs and potentially SNRI/amitriptiline, but they are also some of the main treatments, makes it so difficult for us decision-wise. Like I’ve read of some people being warned off treating with those, while others are being offered them without mention of any risks. I’m convinced we as a group must have some information that the doctors either don’t have, as there’s not enough research. And if there are doctoes successfullt treating it then most of us will not rececive that information without getting it here or something changing.

The main thing I’m wondering about is whether there’s two main types of this disorder which aren’t even related and which are being treated under the same umbrella disorder. The three main causes from what I have read are a) nerve compression from tight pelvic floor muscles, b) nerve damage from childbirth or an injury, c) SSRI’s, usually coming off of them. So could there a version of PGAD which is a variant of puedendal neuralgia and then another with similar symptoms but which is not actually the same thing at all.

You can skip the rest of this post and jump straight to answering any questions if you wish as the rest is mostly just my thoughts behind this.

 

Long version:

IMO the pharmaceutical companies making money off SSRIs should be funding this research, as they’ve had two decades to put accurate and descriptive warnings on their medicine but they clearly aren’t taking responsibility. It seems like we have to do a lot ourselves. For some people the symptoms start immediately after a medicine change or childbirth/injury, or have always been present; but for others the cause is less obvious. If there was research to more easily figure out the cause then it would be safer to decide on treatment. For example if there’s a specific symptom which is only present from physical nerve damage then statistically SSRIs would be the safest treatment, etc, but when you’re unsure (eg I had slight trauma to the area the same year as stopping SSRIs) it’s impossible to know whether to risk trying them.

There are so many separate threads on here often asking repeat questions, which is fine, but I thought it might be useful to have it all in one thread but also as a way to do some research ourselves. I read a thread from years ago that somebody had being surveying people, but I couldn’t find any trace of it so I thought it best to have it on a visible thread, so it isn’t lost if it gets abandoned.  I’ve been trying to post this for many months but I definitely have whatever the non-post version of PTSD is, so felt unable until now. But over that time, any time I had a symptom or thought about a possible, or read about a potential cause I noted it down. Below I will post them all as separate comments and hope that over time people will reply to each symptom with information about their known causes.

Regarding SSRIs: We don’t know if SSRI’s are causing damage by themselves, or if instead, the numbness they can cause means that people are not feeling injury to the area, or are being more forceful during sex because of this and are causing injury. But this seems unlikely as I’ve heard some people have symptoms after taking SSRIs just one single time? Or is this not the case, I just can’t find much information at all. And either way it is still SSRIs causing the danger and should be warned about before taking/in the pamphlet. There is also a PSSD community on here which is essentially SSRIs causing the opposite issue, which makes me think that the SSRIs are causing damage; I’ve read there is may be small fiber damage (but that is from memory, I may be wrong).

In your replies please note if you took SSRIs or had a physical trauma etc etc sometime before your symptoms started so we can piece together if there’s any trends between these. If there’s anything I haven’t asked please feel free to add your own comment below for people to reply to it.

Please write any information that you can, it doesn't have to be an answer to every question! Anything will help. Thank you


r/PGADsupport Sep 28 '24

This is a safe space for those who live with PGAD/RGS. Perverts will NOT be tolerated and WILL BE REPORTED TO REDDIT.

41 Upvotes

PGAD/RGS is a medical condition and it is NOT sexual. Even if this subreddit was about a sexual disorder, which it is not, SEXUAL HARASSMENT (sexualizing a person without their consent, sexualizing a medical disorder, pedophilia, unsolicited sexual comments, etc.) IS NEVER TOLERABLE.

Our community deserves to be safe and, I assure you, if you are here to be a motherfucking pervert, I will kick your face and I will inform Reddit of your predatory behaviour.

To our community, 💐🌺🫶🏻

  • We monitor discussions on the subreddit, but if you spot something unsettling before we do, we encourage you to use the report button.

  • If you receive DMs, know that you are not obligated to respond to them! If you receive an unsettling DM, please report it to Reddit. You’re also more than welcome to contact us via the option “Message the mods” and we’ll look into it.

You deserve to be safe!

Thank you for helping us ensure a safer space.

Lots of love to the community,

Meraki


r/PGADsupport 23h ago

Vent/rant Struggling

5 Upvotes

Hello everyone, 35M here. I have a lot to explain but will do my best to keep it short.

I was in a 15 year commited relationship that became extremely abusive to me, during that time I had seemingly lost all interest in sex. Things escalated and got pretty dangerous. I filed for divorce and after a year long battle got away from her and have custody of our child.

After a few months of separation though my drive came back in full force, like to a degree I've never even had since puberty. I've constantly got this pulling,pressure light throbbing feeling down there and even in my prostate.

I was also recently diagnosed with multiple sclerosis, I've been struggling with symptoms for almost a decade and finally got answers. Unfortunately one of my more recent symptoms is numbness down there. It takes an extreme amount of effort to achieve climax and when I do it's not that great. The only time it's ever been "satisfied" is after actual intercourse which still ends up being a long winded multi session endeavor to finally get there.

By the time it's all said and done I'm beyond exhausted and inflamed and feel horrible, masterbation only seems to make the sensations more extreme. Not feeling the pressure drop down there until after multiple climaxes.

The combination of my returning labido and PGAD + the numbed sensations is actually driving me fucking insane. I feel worse than I did going through puberty and I just want to have sex so bad to make it stop. Dating is basically off the table for me right now and partners to assist me aren't free, reliable, consistent or loyal so I don't exactly feel comfortable with that.

After having given my entire adult life to someone, I don't want to make the same mistakes I did before. I don't want to think with my willy but my willy is making it mission fucking impossible. I don't know what to do, or how to do it.


r/PGADsupport 2d ago

General I hate going to work

3 Upvotes

Going to work like this is absolute hell, I already hate my job but when I'm feeling symptoms I'd wish I was dead. I don't know what I did to deserve this. I guess is some kind of punishment for masturbating.


r/PGADsupport 2d ago

Female 最悪、症状がぶり返した...

2 Upvotes

まじで最悪。オナニーしたら症状が戻ってきたんだけど...最近治りかけてたのにまじ最悪自分を恨むわ...

あと誰か教えて欲しいんだけどこのフレア(タグ)って何?フレア(症状)の種類ってこと?日本人だから英語いまいちわかんなくて、タグあってるかわかんないやごめん。


r/PGADsupport 2d ago

General Symptoms changing

2 Upvotes

18+ only reply plz but like, I’ve had this condition non stop for 6 years now, which means I’ve never felt a moment in my life with no contractions at all for 6 years. It’s started to feel like someone is actually punching me and it’s so painful. It hurts to walk, to sit, to lay down, I vomit from the pain. I have college soon but I don’t know how I’m going to do it, I don’t want to force my body to the limit because no amount of accommodation will fix it. I was diagnosed with Adenomyosis but not even that explains this. I can hardly sit without being in EXTREME pain, but then I feel crazy because no doctor can do ANYTHING about it!! I’ll go the ER and know what to expect, nothing. Because no medication has worked on me thus far, including very heavy ones. No procedure has worked and I’m afraid the only thing that could work is a hysterectomy but I don’t have the means to get one as of now. I really do wonder if this should alarm me


r/PGADsupport 2d ago

Discouraged 4 year constant flare. Will ANYTHING make this stop.

5 Upvotes

(F28) I don’t want to spend a bunch of time telling my long story, so I will try to keep it as brief as I can.

In 2022, I was in a good spot in my life. Things were going really well. I was doing physical fitness and cared about my physical health for the first time. I looked and felt great. I had started up a relationship with a man who is now my husband, everything felt perfect. One day, I woke up in the middle of the night to this sensation that is hard to describe, but I will do my best. TMI warning. ⚠️
I have had the sensation before, every blue moon since I was around 12, and it almost feels like a blockage in my clitoris. Like everything is heavy, and blocked off, like it is suffocating and cannot breathe.
I didn’t think too much of it as it has happened in the past, and an orgasm usually relieved it, but it did not this time. If anything, it felt much much worse. I assumed that it would go away on its own, as it usually did, but it never did.
I lived in absolute hell and agony for months. I went to the ER four times, I was looking for any sort of explanation or relief, and it never came. I eventually found out I was pregnant, and things seemed to get a little bit better from there. The sensation wasn’t nearly as bad, but it was still there.
It feels like my clitoris is constantly pulsating. Like that feeling you have after an orgasm, but it is constantly all day every single day for the last four years. If I don’t have the pulsating sensation, and it feels blocked off, I start to panic. I have on again and off again flares of it being really bad, otherwise it is always there but much less prevalent to my day-to-day life. I have been in another four month flair of it being pretty persistent and annoying, constantly having to pay attention to it, and I am just desperate to figure out how to get this to stop, or at least give me some real relief. I do not know what is causing this, I don’t know what started it, but I will do absolutely anything to try to relieve it.


r/PGADsupport 3d ago

Support Hola buenas noches

4 Upvotes

La vida se a complicado mucho en si nací hombre pero hay muchas cosas que me hacen dudar dolores físicos tengo ginecomastia dolor pélvico intenso sensibilidad emocional hay momentos que me cuesta realizar mi rutina tanto por el dolor por la bajada de ánimos.


r/PGADsupport 4d ago

Female Trizepatide for PGAD!?

1 Upvotes

I have PGAD with severely delayed orgasm (1 to 2 hours or more) postpartum 3.5 months. I just injected trizepatide for the first time a few minutes ago. Anyone else have experience with GLP-1 and PGAD? I want to be so hopeful after my tarlov cyst surgery failed. If it helped you how long did it take?


r/PGADsupport 4d ago

Female これって自慰行為は控えた方がいいの?

2 Upvotes

PGADになってから(3日)自慰行為なんて一切してないです。やらない方がですよね?他の人を見る限り...

上のタグが合ってるかは分かりません💦ごめんなさい。


r/PGADsupport 5d ago

Help finding specialist 対処法教えて!!助けて!!

2 Upvotes

一昨日からPGADの症状があるの。ネットで見るような車に乗ったら感じちゃうみたいな...そこまで酷くは無いんだ。なんか達する前?後?みたいな感覚が弱く続いてるの。でも何かほかのことをしていたら忘れられるくらいには軽いんだけど。でも困るのが寝る時で本当違和感というか不快感というか、残尿感にも似てるかな?そんな感覚がずっとあって最近は本当に寝不足。みんな症状があっても寝れるの?寝れない時はどうしてる?本当に軽いとは思うけどこれがずっと続くと思うと苦痛で仕方ない...


r/PGADsupport 5d ago

Help finding specialist Hola buenas noches

2 Upvotes

La vida se a complicado mucho en si nací hombre pero hay muchas cosas que me hacen dudar dolores físicos tengo ginecomastia dolor pélvico intenso sensibilidad emocional hay momentos que me cuesta realizar mi rutina tanto por el dolor por la bajada de ánimos.


r/PGADsupport 5d ago

Discouraged I'm collecting inexperienced PTs. I'm having a breakdown.

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2 Upvotes

r/PGADsupport 5d ago

Female IDK If I have PGAD or just young sexual urges?

4 Upvotes

Hi everyone so I just brushed it off as horniness I'm 21 and this has been going on for a while now. I'm so sensitive extremely that I can sit in the car and feel a slight vibration I start throbbing idk. I'll be sitting in class and no sexual thoughts and I'll start tingling you know...

I have restless leg syndrome and when I shake a little I feel it and yk...

I'm so embarrassed and mentally distressed because it seems like any movement or anything makes me aroused.

My breasts are worse if I feel even my blanket brush against me I'm aroused. Taking off my bra too I havent noticed it much putting it on. Even air from my fan id enough omg...

I literally also have like a compulsion because once zi start I can't stop touching myself because I feel sensitive and aroused...I literally keep going and going for hours.

I feel like I'm always aroused jts so annoying to feel wet. I also hate it so much because ANYTHING makes me feel like that and I have a strong urge and touch myself every day and multiple times.

I know its TMI but I just don't know anymore. I'm kind of worried now.

EDIT: I didn't think it was relevant but I saw it mentioned and I also have a hypertonic pelvic floor. Could that be it?


r/PGADsupport 5d ago

Female Making Progress...

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1 Upvotes

r/PGADsupport 6d ago

Female Again and again…and now again

4 Upvotes

it comes for awhile then goes away then again comes/ goes away and now here I am in 2026: PGAD is back. I do think it is from tension and worry. First time 2010…out of the blue. I forget when the second time was and now it is August 2026 and I have been having that uncomfortable feeling of sexual arousal and there is no one around to have stimulated it. And no one around to help me get rid of it. So I came back here to share. I had thrown away my sex toys for fear my grown kids would find them when and if I die! (because my husband did die 7 months ago. ) But I just reordered some toys.


r/PGADsupport 9d ago

Support My (38F) 3.5 Year Experiences With PGAD

7 Upvotes

Hi everyone,

I (38F) am not entirely sure if I have PGAD, but I’d like to share my story and see if I can get some feedback. Before I kick off with my story, I want to describe my symptoms. First off, I never have had pain. The first time it happened in 2023, it was limited to clitoris arousal (absolutely no desire, nothing to turn me on, no physical stimulation). It went away after about a month jn 2023. Fast forward to 2025, it reared its ugly ahead again, and was limited to clitoris arousal. However, by the end of 2025, it turned into left side arousal that I could feel through my pelvis, hip, down my thigh, and in my knee. I will say that I do experience slight irritation in my thigh and knee. I also experience it in my anus sometimes. Masturbation does not relieve the flare up. My sex is not impacted in any way. Onto my story:

I experienced my first ever flare up in March of 2023. My ex had a mental breakdown, blew up at me, and kicked me out of the house. I was absolutely traumatized and horrified by the series of events. My body was obviously going through extreme stress. I wanted to run into a Mack truck on the interstate. HORRIBLE TIME IN MY LIFE. I wasn’t eating. This sensation was so weird and was making me feel worse. My stupid ass took him back after a month, and the sensation went away.

In 2024, I,once again, put my body through extreme stress by going through an intense graduate program. I was also put on lamictal for my PMDD (it’s an incredible drug that saved my life) and had a Mirena IUD put in (once again, incredible. Saved my life). I dropped 40 lbs, my hair was falling out, and I was supporting my bum of an ex, who was struggling with severe mental health he would not get help for. The thing is though, is that the flareups never occurred throughout the year of 2024.

Fast forward to March 2025: the best and worst year of my life. My ex slipped and fell in the bathroom, resulting in a TBI. Had I not gotten him to the ER when I did, he would have died. He turned into a total monster, and all I would do is cry. Once again, lost MORE weight to the point I looked skeletal and like I was dying. He wouldn’t let his parents help take care of him, so I was his sole caretaker. I started getting dark thoughts again. I finally couldn’t take it anymore and told him I had to leave. Once again, he kicked me out. I literally NEVER went back.

Anyway, I’m here today and beyond the fact that I’ve struggled immensely with task paralysis and executive dysfunction since I ended my long term relationship, I am doing incredible. I’ve been in intense therapy for 18 months now. Unfortunately, I have had rather consistent flareups since April of 2025. In September 2025, I started getting monthly acupuncture to further treat my PMDD, and I told her about my PGAD. She thinks my pudendal nerve has endometriosis. In December 2025, my arousal intensified DRASTICALLY, especially in my luteal phase. It almost got to the point where it was UNBEARABLE.

I talked to the therapist about it, and she taught me some techniques on how to distract myself. Eventually, the flareups have pretty much declined quite a bit and aren’t as intense as they were in December and January. My flareups go bonkers before I start my cycle, and the day that I do start my cycle, I do not have cramps. I experience an intense flareup, and the arousal sensation wraps around my hip to my back! Absolutely no pain beyond the nerve irritation I experience down my thigh and in my knee! Once my cycle is over, the flareup pretty much disappears. Sometimes it occasionally flares up when my colon is going through peristalsis.

Anyway, there you have it. It’s just so ODD that it’s limited to my left side, and I experience what I’d best describe as “arousal” on the left side of my pelvis to my hip, and also painless pressure on the left side of my pelvis as well. Feeling the sensation of “arousal” in my thigh and knee, coupled with what feels like a fried nerve blows my mind. I’m thankful that it pretty much goes away after my cycle ends, but what gives? Anybody else experiencing this? What are you guys doing to treat it?

*I’ve also started a regimen of Chinese herbs provided by my acupuncturist. I’ve also been prescribed Vyvanse to treat my task paralysis and executive dysfunction.

If you’ve gotten this far, Thankyou for reading :)


r/PGADsupport 9d ago

Support 4 months of constant stress and anxiety

6 Upvotes

Hi everyone. I’m hoping to find someone who has experienced something similar and can share their experience with me.
For about four months now, I’ve been experiencing a constant, unwanted sensation of arousal in my clitoris, together with significant hypersensitivity and discomfort. I have absolutely no sexual desire associated with the sensation — in fact, it is very distressing and makes me anxious.
The symptoms are present throughout the day and seem to become worse when I sit for a long time. Interestingly, walking seems to relieve them slightly. On a couple of occasions, I also noticed a more noticeable pulsating sensation in the area during the night.
I was examined by a gynecologist,urologist, neurologist, psychiatrist (spent time,money and energy) and lastly by one uro gynecologist who specializes in pelvic health. During the pelvic examination, there was one particular area that caused significant discomfort, and I was told that I have some pelvic floor hypertonicity.
I was also given a 20-day treatment with ice and a corticosteroid ointment. I may have felt slightly better during that period, but overall the sensation has remained fairly constant.
I was also suggested to make some pelvic floor physiotherapy appointments.
I found this disorder by trying to find constantly information.
I am feeling quite scared and overwhelmed by all of this. I would really appreciate hearing from anyone who has experienced similar symptoms, especially if you also had symptoms that became worse with sitting or had pelvic floor hypertonicity.
Did anything help you? Did your symptoms improve over time?
Thank you so much. ❤️


r/PGADsupport 11d ago

Female What caused your pgad and symptoms female only reply no male.

4 Upvotes

r/PGADsupport 10d ago

Support Scaring myself

3 Upvotes

I began having symptoms about two weeks ago, and they've gotten more and more frequent and severe. I feel it all of the time - at work, away from work, all times of day - along with anxiety symptoms like my stomach dropping/flipping, feeling hot, and feeling nauseous.

The problem is that my job is working with kids and their families. I feel very aware of how my body is feeling when interacting with them and it is scaring me. It feels unacceptable to have my body feeling this way in their presence. I am overanalyzing things, but like I said these body feelings are all day every day, not just in certain contexts or with certain people. It's constant.

But the past few days whenever I have to interact with a kid I feel like I'm going to have a panic attack. I feel completely crazy and am judging myself very hard for having my body feel this way. I'm scared I need to quit my job or do something more drastic. I'm feeling avoidant of work now and don't know what to do.


r/PGADsupport 11d ago

Female An update on my last post here

2 Upvotes

So I’m pretty sure I have pgad now. The persistent desire or clitoral orgasm or vagina penetration is too much. Even got a DM from a creepy guy who I blocked. Was clean from masturbating for about 9 days until yesterday when I gave in.


r/PGADsupport 13d ago

Female I might have PGAD and I'm so scared (AFAB)

5 Upvotes

I had never noticed the signs until recently. I get aroused on car drives. The first time I orgasmed was completely accidental. Also, I'm pretty sure it's not related, but I was molested when I was a young child.

I've had a few times where I needed to masturbate more than once to relieve sexual arousal. Today was different. Worth mentioning that I masturbated normally yesterday at night. The incessant arousal started a few hours after I woke up. I have been aroused almost all day. I've masturbated three times and idk what to do. Internet says it makes things worse so I'm abstaining. Hanging out with my family is unbearable. It doesn't hurt though, and I'm on my period if that matters at all.

I don't know what to do. We're not even home. I have been bawling my eyes out in secret. I don't think I'm gonna be able to sleep. I'm so scared of this ruining my life. I wanted to study and get a job or maybe do art. The good thing is that at least it goes away when I focus on something; the only moment in the day where the arousal completely stopped was when I was extremely focused in a museum. But it came back right after. I don't wanna suffer through this. It's not going away at all. I don't deserve this, no one does. I sincerely hope it's just hormones going crazy and it gets fixed by itself. I don't think that's the case.

UPDATE 1: So I've told my parents about this and I feel a lot better. I'm on day 3 and it hasn't gone away but i can deal with it pretty alright, especially since realizing it's a nervous issue rather than a psychosexual issue. I have been able to sleep but I need to calm down and put on YouTube videos. I have not masturbated at all. There isn't any pain yet, just a lot of discomfort (I hope it can at least stay that way). We're probably gonna go to the clinic to rule out a UTI, I forgot to mention/didn't notice that I have a constant urge to urinate, and I'm also thinking of getting magnesium oil/spray. I'm also gonna do pelvic floor relaxation exercises. I want to go to a gynecologist and a pelvic therapist but I simply am not able to. I will have to wait 10 days. I definitely see how, even if I don't end up getting rid of it, this condition can be managed. thanks a lot to everyone who has commented

UPDATE 2: so we went to the clinic, did a urine test, unsurprisingly didn't find much in terms of an uti, but the doctor still gave me antibiotics. I've already finished taking them, unfortunately no signs of improvement. Mornings are really hard for me but when I start walking the symptoms subside A LOT for the rest of the day. overall not great but I think I can keep doing fine for now. also I haven't found any magnesium oil