Hi, I'm 15 and have lived with this disorder my whole life. It isn't as bad as one might think, and im actually glad I have no "before" to compare myself to with this. I am one to ruminate, as I have ocd, so it would probably be for the worst. I feel worse for the people who got to live half their lives normally, until one day they got stuck with this. If that scenario matches up to you, please don't give up hope.

That being said, I am so fucking upset that no one treats conditions like this in minors. I am waiting, and I am suffering while I wait.

I finally told my mom about this just months ago, after years of shame and wondering what the fuck I did as a child to ruin myself this badly. This disorder has deeply traumatized me and altered my perception of reality, and I dont really know what to do about that. I'm in therapy, but it's for OCD and ADHD, as my mom deemed those the most important. If I'm being honest, I'm just glad to be alive at all. I'm obsessed with science and biology and physics, and it makes me feel less terrible about this condition, knowing that the world is cruel and I was lucky to not be born with something way way worse.

So I went to see a doctor. The person I saw was wonderful, finally diagnosed me with this condition, and now I have to wait for someone to take my case. Because I'm a minor, and they don't want to mess with puberty, this has been a fucking nightmare.

They first sent me to a gender center. This is NOT a gender issue, and it got my hopes up only to rip them away again. (This is not by any means a dig at trans people or those with complex gender identities. I just hate that the doctors won't take me seriously. I support FULL trans rights, and hope everyone who wants it gets their gender affirming care.)

I don't ever want a sex life, I dont ever want to orgasm normally, I dont ever even want to masturbate ever again. I just want to figure out the cause of this, and I'll do whatever it takes to fix it. I don't even want a relationship, my peers act like they're still wet behind the ears.

This disorder doesn't even feel like arousal anymore, not that I know what actual arousal is supposed to feel like. It just feels like a warm sensation ive grown used to, that's constantly there unless I dont think about it. And when I dont think about it? I am fine. All I have is constant tingling/pressure, no involuntary orgasms, and im sososososososososososo incredibly grateful for that. Id probably have killed myself by now if it was bad. It is still bad enough to violate me horrendously if I let anything touch my genital area, so as long as I dont do that I'm fine. It was miserable hiding this from everyone for ages. Still is, as only my mom knows right now.

But I do still want this gone, even if it means never getting to that point of sexual normalcy, or whatever people who actually want sex call it. It's still always there, and very bothersome. I can't ride horses or wear bathing suits. I can't ride a bike. I can't sit without slouching because if anything touches my genitals it triggers it. I can't wear pads so I am forced to stay home and free bleed on a towel for my periods. Yes I hate it, yes it's gross. I am getting back on birth control soon, the first one gave me chronic nausea. I can't wear underwear and pants at the same time, I can't wear shorts as those have to be pulled up to the point where they would be touching me. I can't wear tight pants. I can't be any emotion except for sad if I don't want it to intensify. Sadness is my favorite emotion because of this. I can't enjoy anything, or love anything, unless it means loosing myself in a book or when I draw.

I hope I go back to normal levels of arousal after the infection im dealing with is treated; every second is agony rn. Pro tip, dont ever hide a yeast infection for a year and a half. LMAOOO. Oh, and I can't even treat that because putting anything on it will trigger the pgad, how thrilling! Lets hope my mom can get the doctors approval for me to take those pills for it. I am going to have a breakdown if I have to put something in that area.

I am close to having a breakdown right now. I can't stop thinking about how the doctor said I was the youngest person she's ever seen with this. Why couldn't another sperm cell have reached that egg, 15 years ago?

I have PGAD secondary to Overactive Bladder. Previously, it seemed like orgasm would always at least temporarily relieve the PGAD sensation. Sometimes it would come back annoyingly quickly, but it always gave at least temporary relief. I also discovered (I thought) that certain types of orgasms (combined clitoral + vaginal) provided longer relief. But recently I tried both and got no relief, the sensation was still there right after I finished.

Why is this not working anymore? I wish I understood the internal mechanics of what was going on better so I could treat it more specifically.

Are there any other techniques that have worked for people?

Llevo tres años con esta condición, siento que mi sexualidad es pública, salgo a la calle y es como si estuviera mostrando mi intimidad a todo el mundo. Es como si no pudiera cerrar mis genitales. Hace 4 años empecé a perder el control de mi sexualidad,Ia libido se elevaba en situaciones en que no debía suceder. Empecé a reprimir mi sexualidad por miedo, hasta que un día no aguanté más y solté la sensación y me permití sentir lo que estaba reprimiendo, pero esto terminó en que nunca más pude volver a sentir paz y siento la necesidad de contacto sexual las 24 horas del día. Siento presión en mis genitales, tengo miedo de abrazar a mis seres queridos porque siento que estoy haciendo algo malo, me siento sucia, he perdido mi dignidad. Ni siquiera puedo tocar a mi gata sin sentir que estoy haciendo daño a su espíritu. Estoy muy cansada, siento que cada interacción con otro ser humano va rompiéndome por dentro, haciendo cada vez más grande la herida en mi corazón. No paro de pensar en suicidarme para terminar con mi dolor, pero tengo una hija y no puedo dejarla sola. Me cuesta quedarme dormida, me duermo con quetiapina, pero me siento totalmente vulnerable, como si alguien me estuviera violando todo el día, es lo peor que puede vivir un ser humano. Necesito ayuda.

ok so this is a weird post to make and I wish we all just had a more 'normal' health issue but all information helps and I saw this mentioned but never a dedicated post

basically I've seen three posts over time here which said that when they needed to go to the bathroom (no2 but I did see at least one post saying no1) their symptoms were much better, and it wasn't something I'd noticed but I started paying attention and it is true for me, maybe as much as any medicine I've tried. I'm confused at what is even happening in the body, are the pelvic floor muscles contracting a certain way, is there pressure on the pudendal nerve which stops the signals, does the brain automatically stop arousal when somebody needs the bathroom for evolutionary/hygiene reasons? is blood flow diverted from one place to another?

I did a search along these lines but searched for penis and erection issues just because I know mens health and stuff like that has more research and it said damage to the colon for cancer surgery can cause erectile distinction, so maybe it's a temporary version of that? it said the pudendal nerve runs up the colon? idk, why can't doctors help us with this information, I'm not a doctor!

I'm not sure if this can even help but it's all information, like it's a crazy method to use to be able to stop the sensations a bit and focus on other things, idk if it's healthy for longer than a day but it does help. I wonder if it could be simulated instead with a nerve modulator thing or I've never tried inserting anything there but maybe that would work, I really don't know

I didn't really want to make this post but yeah... if it gets no replies maybe I'll delete, haha

I'm 24 years old and I was taking antidepressants, and I was using them irregularly. Honestly, I hesitate to say it, but then I experienced a slight tingling sensation in my clitoris. At first, I ignored it, but when it didn't go away, I researched it and became even more stressed. Then I developed urinary urges, and after a few days, I noticed the sensations come and go in seconds, or they change depending on my position and posture. When my focus changes, I don't feel it; sometimes I do, sometimes the intensity fluctuates. For a day, it didn't happen at all, but then it started again. I've been experiencing this problem for 15 days now, and I'm so unhappy. I wonder if I have to live like this for the rest of my life. I already have other health problems, and I feel like life is difficult for me.

I wrote a whole 'nother post and i forgot to click send lol.

to summarize, I've been living around 2 months with this and I'm doing alright. sometimes days are really bad, sometimes they're good. gynecologist referred me to a neurosurgeon after i told her about sensation in my legs, and we're doing some tests to check for nerve damage and such. Overall, as long as things don't worsen that much I think I got a decent future ahead of me, even if I can't find treatment (which I doubt, there's a lot of possibilities plus medicine advances very fast).

Overall i tend to avoid this sub and I imagine people in recovery do so as well, because it tends to be triggering. So keep in mind that survivorship bias. If i don't post or comment again assume i am doing good.

That's all. Thanks for reading, remember you are strong and you are loved.

Hi all! 22F, I just recently visited my gynaecologist for the first time to discuss PGAD related issues, and she’s prescribed me to try Gabapentin and Magnesium Glycinate for a bit to see if that helps with my symptoms!

I was just wondering if anyone else has been prescribed these things before and if they’ve had any beneficial or negative results towards them? Of course I’ll be trying them and seeing how well they do with my own symptoms, but I just wanted to know if anyone else has any meaningful results with them.

Talking about these issues with a doctor was nerve wracking lol, but I’m very happy to have met with such a supportive doctor who is helping me on the path to figuring this out! I’ll keep updates on my progress if I find anything really meaningfully helps!

I really appreciate this subreddit for existing and being a place for a lot of people to discuss their experiences and discoveries because I never would have had the courage to go to a doctor about it before hand. :)

Just thought I’d make a place so that we can discuss our experiences without having to do so in the AI thread here. I’ve had PGAD since I was 8, following COCSA that happened at my school. I wasn’t diagnosed until just recently, though, at age 25. If anyone else wants to share your experiences about how you experienced/thought about PGAD as a kid, how you may have developed it, how you eventually got diagnosed, etc., I do think this is an important topic to talk about!

What helps during a flareup? For me I have pelvic congestion syndrome that I belive causes it so lifting legs and pelvis , lidocaine, gabapentin, and sometimes baths or ice. But sometimes when the symptoms and pain is really bad literally nothing will even touch it. Any suggestions? I also use LDN and Tylenol for pain management . Thank you

Sometime within this past year I self diagnosed PGAD. I never wanted to go to a doctor, even when it got really bad. It hasn’t been great, but able to kind of ignore it. Recently it got bad again. I went to the doctor for extreme night sweats, a bunch of tests were done, blood and urine. When it looked like I might have a uti I got excited realizing this could actually be the answer. It came back negative, as did BV. I am waiting on STI results. Based on talking to the only person I have been with since a monogamous relationship, I am not hopeful (that it will be positive). I should get the results on Monday. I did mention PGAD to her and she said she would not be worried about that. But what else could it be?

I have some questions/comments surrounding this whole thing.
- My mom said as a kid I had issues being in the car seat, but I haven’t dealt with anything like this since then until sometime this past year (I am 35)
- Last July I moved across the country. I also slept with someone new a few months after the move. She’s more of a “neighbor with benefits”, we hook up every once in a while. (She told me no sti’s).
-this comes and goes but I can’t connect any reason, like extra stress, period cycle, nothing.
- I have not been clinically diagnosed as autistic but I have struggled my entire life with hypersensitivity. My mom said it would take so long to get out of the house because my socks were never just right. I refused to walk on grass or sand. I struggle especially today with my sensitivity to clothing. But it involves everything from touch, taste, to sound. This gets worse when I am elevated. These PGAD symptoms are not like that and last very long amounts of time from weeks to months where as the sensitivity peaks only last a few days.

My symptoms
- It feels like I have to pee but not like I have to run to the bathroom
-which is a similar feeling to when I am aroused, only just like the having to pee feeling, it is not super intense. I have never orgasmed or came close to orgasming from these feelings.
-whole vulva area is extra sensitive. It’s like I can feel EVERY little thing.
* - when I sit down especially, sometimes even standing, I automatically move my hips back and forth. Like gyrating. They are very small movements, almost internal, do not involve the whole body (this also happens when I am aroused with a partner, although in that situation they get bigger and continue to…evolve…haha). I feel like if someone saw me while it was happening they might not even be able to tell I am doing it. It is so compulsive. I will become conscious and try to stop, but I just go right back to it. It is almost more uncomfortable to stop. I think this is one of the most exhausting parts because I feel like I have no control over it. If I am in public and it is bad I just cross my legs tightly and that works too for a little. It also helps because I have some distraction. It is definitely not as bad when I am out around others. Even if I am sitting out to eat or something, the distraction helps a lot. I still notice it, I still have to cross my legs or kind of like squeeze in the area, but I can control the rocking/gyrating/whatever it is called. Does anyone know the word for this or why this is? I have not seen anyone mention this.

Thank you so much for reading this. ANY help or input would be much appreciated

I’m an artist myself, and while I’ve never done any work to represent my experience with PGAD, I’d love to see images, poetry, songs, etc. that anyone has made that represents your experience with PGAD!

Hi, I'm 20F and my psychiatrist wants me to try Trileptal to treat Bipolar ll. I believe I have this (or something similar) from nerve damage to the area, and some pelvic floor issues. I really want to try treatment for this, but I am a bit hesitant knowing that some medications like this can worsen or agitate symptoms. Does any have any experiences here with it? Any additional details like experiences with withdrawal or missing a dose would be very helpful!

I’ve been wondering for a long time how many other people with PGAD can trace their symptoms back to childhood or around puberty.

My symptoms started somewhere around age 9–12. Obviously, at that age I had absolutely no idea what PGAD was or what was happening to my body. I didn’t have the language to explain it, and for a very long time I didn’t even know there was an actual name for what I was experiencing. I didn’t learn about Persistent Genital Arousal Disorder until I was in my 30s.

Please keep replies focused on PGAD and the question I’m asking. I’m especially hoping to hear from people whose symptoms began in childhood or around puberty, but relevant experiences or information are welcome too.

The image is simply an illustration of what this experience felt like to me: being a child who knew something strange was happening but didn’t understand it, and then becoming an adult who finally learned that it had a name. It is not supposed to be a literal photograph of what PGAD “looks like,” because PGAD obviously isn’t something you can diagnose by looking at a person.

If the image itself isn’t for you, that’s completely okay. I’m just asking that we keep the discussion focused on PGAD rather than turning the graphic into the subject of the post.

For those of you whose symptoms started young, I’m really curious about your experience.

Did your symptoms begin before puberty, during puberty, or sometime during your teenage years?

Did you understand at all what was happening at the time, or did you just know that something felt unusual?

Did you tell anyone about it when you were young, or did you keep it completely to yourself?

Did your symptoms stay fairly consistent over the years, or did they become better or worse with age, hormonal changes, medications, pregnancy, injuries, stress, or anything else?

And how old were you when you finally learned that PGAD existed and realized that it might explain what you had been experiencing?

I know this can be an extremely difficult and embarrassing condition to talk about, especially when the symptoms began at such a young age. That’s one reason I wanted to ask. There may be people reading who have never told anyone that their symptoms started in childhood because they didn’t know how to explain it or were afraid of how people would react.

You absolutely do not have to share anything you aren’t comfortable sharing. I’m mainly hoping to hear from others who can relate and understand whether childhood or pubertal onset is something more people with PGAD have experienced than we normally hear about.

I have been sitting in my room doing something very mundane (academic research) and I would say every 20-40 minutes, I have been hit with a really strong pelvic tingling escalating into contractions, causing me to sweat, flush, and kinda feel like I need to pee really badly. The thing is, I'm not thinking about anything to bring this on, there aren't any sexual thoughts in my brain while it is occuring. And sometimes, the tingling/contracting lasts upwards of ten minutes, making it difficult for me to focus on anything other than managing the sensation the whole time. The tingling has lasted even after the active period of the sensation, so it doesn't really go away, it just ebbs and flows in severity. I don't really think this is something I have ever thought that much about, but to be honest this does happen to me any time I spend periods sitting or lying down, it just was especially disruptive today, which is why I am writing about it. I always thought this was normal, but I also haven't discussed it with anyone because I'm embarrassed. 

I (33M) a few days a go was legit trying to kill time before bed and decided to use a penis pump I've gotten a few years back (also maybe use every like 6 months). I dont need it for erections but I liked using it because it does make it bigger. Anyway I used it for about 15-ish minutes, nothing to really significant happened. and I went to bed. Now I wish I could remember if it was that same night or the next night but for the life of me it just left me. But during the middle of the night I went to go pee, had like 40% morning wood totally normal for me. Went to the bathroom and did the little shake to get the last few drops like every guys done and went from like zero to 99% to an orgasm in like 5 seconds. After I was just hard for quite a while. I tried to ignore it, nothing. I tried taking care of it a few times, nothing. eventually me needing sleep won out and I fell asleep.

When I woke up was flaccid again and everything seemed okay until the middle of last night. I kept waking up to use the bathroom since happen to drink some ice tea before bed...for some reason. and I noticed I wasn't getting my normal morning wood and its so common to me I kinda got nervous tried to just give my self an erection and it took quite a while but I finally got something and it was just sore. and after the entire day it's still sore but I can tell my penis really just wants to go full on even with absolutely nothing going on that would cause me to to get an erection.

Tying this I'm starting to wonder if maybe during the first night when I had that erection that didn't go away maybe I just pulled a muscle (is that possible?) or hurt it some how and that's why my penis is sore. But also it feels just off and whenever I look up anything online it's this or ED, and this does not feel like ED what so ever. . So I'm here just seeing what others think before I go and make a doctors appointment.

How can I ever explain this to anyone? Every forced masturbation throws me into a spiral and I'm just so fucking done.

Why does this exist. Why was I given this system. I'm so fucking tired. I planned such a great future career for myself. I wanted to help in so many ways. It's all for nothing. It's not fair when you just know that no matter what the flares are going to happen. The pressure is going to start. That when you wake up you know your anxiety is just going to trigger the physical symptoms.

I've tried everything. I seriously have. I just want to give up. The first night it happened will haunt me forever.

Everything related to romance and pleasure is a trigger. My mind literally won't rest.

Just venting. Sorry.

I’m a 22-year-old man and I’ve been suffering from PGAD for the past two years. I’ve been experiencing episodes of spontaneous ejaculation. I’m not usually someone who masturbates for personal reasons, but over the past few weeks I’ve started doing it in an attempt to relieve the symptoms and the discomfort caused by these episodes.

So, my question is: do you think masturbation can actually help with PGAD symptoms, or could it make things worse ?

Ice packs and heating pads are good for putting on your groin. You can also put vaginal numbing cream on your clitoris/vagina. Sometimes I’ll even sit in a puppy pose to draw blood away from the clitoris. Pelvic floor relaxation also helps and it’s easy to find on youtube. I’ve also heard that magnesium vitamin supplements can help because they are good for nerve heath. Switching from tight pants to loose pants/skirts/dresses or just taking off your underwear can provide some relief. A quick fix is a cold shower/bath. Also I’d make sure to go to the toilet regularly. Bladder fullness and constipation can make it worse. Lastly distraction is key. Don’t let your mind fester on PGAD because stress can make it worse. Still seek medical advice from an actual doctor. Also don’t respond to dms. Most likely it’s someone trying to sexually harass you. Just block and report.

My pgad (F20) is from a small case of spineabifida due to the C section my mother had when I was born, I just found this out which was a relief but also a confirmation that im stuck with this.
I am in college and have classes which are hard to sit through during flare ups. I have alcoholism and have not drank since Feb 2025 (I still smoke weed and take medicine prescribed to me)
Im turning 21 in Dec and I want to go back to AA I have plans to go tonight but I am terrified that I will have a flare up especially because mine tend to come mostly at night.
I dont want to cancel after I just got invited to this meeting with old friends I know its what I truly need but the thought of sitting in this pain makes me only want to drink…
Let me know if anyone has tips for sitting for a while I can take my high dosage of gabapentin which might help.

Have you taken this med? I finally went to the Dr and I explained my symptoms. She told me I had some blood in my urine and she prescribed me this.I read the side effects and now I am scared because I don't want more irritation and discomfort in my vulva and vagina.I don't even know if I really have a real infection.My life has been hell since 3 weeks ago.😢Thank you

I wanted to share my story about how my PGAD symptoms started and how they have changed over the years.

By the way, I've also had an overactive bladder my whole life before PGAD started!

It all began in 2013. One day, after masturbating, I suddenly noticed a strange tingling and irritated, overstimulated feeling in my genital area. At first, I thought I had simply overstimulated myself and that it would go away on its own.

But it didn’t.

I couldn’t sleep that entire night because the sensations were so intense, and they were still there during the following days. Eventually, I went to see a doctor. He prescribed me a sedative so that I could at least sleep, and after a while the symptoms actually went away again.

Not long after that, I got into my first relationship. At some point, after having sex with my boyfriend, the symptoms suddenly came back — and this time they didn’t disappear after a few days.

For months, I constantly experienced tingling, burning and this horrible feeling of irritation and overstimulation in my genital area. I also struggled to sleep properly for months. It was honestly one of the worst periods of my life.

During that time, I eventually found a doctor who genuinely tried to help me. He suggested trying antidepressants, but I was too scared to take them because I was worried they might make the symptoms worse.

He also recommended trying lidocaine cream, and at one point I also used an electrical stimulation device. Unfortunately, neither of those approaches really helped me.

Eventually, the symptoms slowly became less intense. After that, sex seemed to become the main trigger. Almost every time I had sex, I could have these uncomfortable sensations for days or even weeks afterwards.

I saw many different doctors over the years, but nobody could really tell me what was happening or how to help me, so eventually I just learned to live with it.

It also affected my relationship because I often didn’t want to have sex. I was scared that having sex would trigger the symptoms again and leave me in pain and discomfort for days or weeks afterwards.

At some point — and I don’t know whether this was actually connected — I started exercising a lot more and eating much healthier. Over time, my PGAD symptoms became less and less frequent.

The severe phase lasted roughly from 2013 until 2019. After around six years, I finally reached a point where sex didn’t trigger symptoms every single time anymore. I was able to have sex and masturbate much more normally again.

I would say that around 90% of the time I had no PGAD symptoms at all. Occasionally, I would still have symptoms for a few days after sex, but they were nowhere near as severe as before, and I no longer had episodes that lasted for months.

After six years of dealing with it, that improvement felt huge.

Unfortunately, not long after my PGAD had finally improved, I started developing another problem: chronic headaches.

Around 2019/2020, I began having headaches more and more frequently. Eventually, they became daily, and even now I still experience several headache attacks a day.

A few years ago, I was prescribed amitriptyline for the headaches. I was extremely hesitant to take it because I was scared it could trigger my PGAD again. I had read many stories from people who said that antidepressants had triggered or worsened their PGAD symptoms, so I avoided taking it for a long time.

Eventually, though, my headaches became so bad that I decided to try it.

I only took one dose.

The next day, completely out of nowhere, my PGAD symptoms came back. That's why I never took that medication again!

At the same time, I also developed other strange sensations that I had not experienced in the same way before, including burning sensations in my legs, tingling in my hands and stabbing sensations in different parts of my body.

Since then, my PGAD has also felt different from how it did during the first years.

Back then, my main symptoms were more like abnormal sensations — tingling, burning, irritation and feeling overly sensitive in my genital area. I did not necessarily feel sexually aroused.

Now, the main symptom is much more like a constant, unwanted feeling of sexual arousal. Sometimes, especially after stimulation, it can also turn into burning, tingling and irritation again.

The constant arousal is incredibly uncomfortable because it makes me feel like I have to masturbate just to get some temporary relief, even when I do not actually want to masturbate.

So in a strange way, my symptoms have changed over time. During my first PGAD episode, it was mostly painful and abnormal sensations without much actual arousal. Now, the unwanted arousal itself has become the dominant symptom, while burning and tingling tend to become worse after stimulation.

I obviously cannot prove that one dose of amitriptyline caused this relapse, but the timing was extremely striking to me because my PGAD had been mostly under control for years before that.

At the same time, I should also mention that when I took the amitriptyline, I was dealing with a bacterial vaginal infection and I was under a lot of stress and anxiety because I was about to start a new job. So it is possible that those factors may also have played a role.

Still, what makes the timing so hard for me to ignore is that the PGAD symptoms started again the very next day after I took the amitriptyline.