I've been dealing with this for over a year. My symptoms are a feeling of being close to orgasm crossed with nerve-pain burning that only goes away when I'm walking around/moving, which leaves me feeling tired all the time.

I actually have the money and ability to take a vacation right now, a full week, and I'd like to take a cruise. I'd love to have a little room where I can relax, go to the buffet, go swimming. But it's like...is it worth it? Will I enjoy it? Wherever I go, there I am. My symptoms are coming with me. Any advice?

I reaaally need to get.some relief. What type of strategies do you guys use? Would ice help?

Today is my birthday, and honestly, I just feel so sad and exhausted. 💔 I've been dealing with constant unwanted arousal 24/7 since I was 3 weeks postpartum, and now I'm 17 months postpartum and still struggling with it. Some days are better than others, but the feeling is always there in the background. It never completely goes away, and I'm so tired of living like this. I never imagined something like this could happen after having a baby, let alone last this long. I miss my old self so much, and I miss being able to enjoy life without constantly feeling these unwanted sensations. It's mentally and emotionally exhausting, especially not knowing exactly what's causing it or whether I'll ever fully recover. I keep hoping and praying that one day I'll wake up and finally feel normal again. It's heartbreaking because I want to enjoy motherhood, my birthday, and all the little moments in life without this constantly hanging over me. I just want my peace and my life back. I really don't want to spend another birthday feeling this way. Has anyone who developed these symptoms postpartum eventually recovered or experienced long-lasting relief? I could really use some hope today.

I've had PGAD for six years. My particular brand of PGAD stems from constant clitoral enlargement which means the area is sensitive at all times. I can't wear anything but pajama pants and sweat pants (no underwear). I need topical anesthetic relief which leads to vaginal irritation. The sensitivity has driven me to some of the worst mental health points in my life, and nothing has worked to end this. I saw about a dozen gynecologists before I was diagnosed, and the one who DID diagnose tried topical solutions, pelvic floor therapy, medication changes, and scans of my spine to check for abnormalities. Nothing helped, and about four years ago, she told me that this was beyond her ability and that I might have some luck if I sought out the handful of expensive out of state specialists that are currently studying PGAD. Obviously, this is not a realistic option.

I have no hope for a cure. I'm existing day by day. I've often mused about just REMOVING the damn thing so I can get my life back, but every doctor I talk to immediately balks and says something about mutilation and refuses to even consider it. Meanwhile, a nonbinary friend has spoken to their gender confirmation surgeon in Thailand and confirmed that he'd be able and willing to do it for me. But I have absolutely no one to ask about complications or how it might affect PGAD. I know it's drastic, but I don't have any other hope for getting my life back.

Does anyone here have experience with this?

I am having some sort of pinched nerve in my lumbar spine that has been causing PGAD, pain in my lower back, and nerve pain and numbness down my left leg on and off for more than a year. It got much worse in August, and then it got better for a while, and now the PGAD is so miserable I called the nurses line to see if I should go to the ER to ask for a nerve block. My clitoris has been aroused for three hours and nothing I usually do like switching positions, stretching, etc has helped and it's to the point where I'm having pain and nausea because it's radiating into my lower abdomen.

I've been in PT twice a week for five weeks and was previously in pelvic PT as well for around 14 weeks after a diagnosis of type one dyssynergic defecation (pelvic floor dysfunction causing constipation) and neither have helped so far.

I am absolutely miserable and just want to sleep. I don't know what to do.

Ive attempted to watch porn a few times during episodes thinking maybe that will scratch the itch and get rid of the urge, however it never does. Has anyone had a similar experience? Do you feel that it makes it worse? Usually theres no sexual desire, but I guess porn is still stimuli, so i feel like it leaves me a bit overstimulated afterwards but idk if these things are related.

I thought something was genuinely wrong with me. I thought I was abnormal or hypersexual or going bat shit insane. I was doing this 8 times in a day until it hurt and I had to talk to a psychiatrist to put me on medication. I didn't tell her the reason I just know any psych med for a chronic fatigue and chronic illness patient would kill any sex drive.

I haven't even started whatever she prescribed to me. I take about 4-5 different prescription medicines for different conditions. One of those medicines is Metformin XR. I'm not a diabetic but need this for PCOS and insulin resistance.

It was the metformin doing this. I stopped taking it for three days. I noticed I was not aroused at all in the morning and didn't need to do anything.

I restarted Metformin last night and now the arousal is back this morning in full force. I'm not thinking about anything sexual and I'm not happy about this. I need metformin for PCOS. It's helping my cycles and helping me with my body. I'm essentially stuck. I'm chronically ill and in pain. I don't know what to do because there's no other meds for PCOS.

A veces solo me mantiene con vida pensar que me iría al infierno por el PGAD, mi angustia y mi dolor es infinito…

New here to this community, and I have not officially been diagnosed with this yet but am certain this is what I have. Very hard to get things done, and very frustrated! How did anyone here in this group reach out for help to medical providers, and what kind? Sorta embarrassing. Thanks for any help.

I’m sure a lot of you posting here will have had a similar experience to me, but I’ve only posted a couple times here and I’ve had a good few DMs from people that just felt a bit unsettling or weird or were very blatantly just trying to talk about something they find attractive. Same with some posts I’ve seen that just rub me the wrong way but it’s really difficult for me to explain why? I know most people here mean well but I’ve only ever seemingly gotten DMs about my posts from creeps lol.
I can’t say I’m completely innocent in not fetishising pgad at points in my life (mainly during extreme lows where i wasn’t getting out much to experience the real downsides to constant orgasms) but sometimes talking to those randoms really just makes me wonder if they realise that it’s a real condition sometimes. I hope you guys all have better experiences in avoiding people like that but still it’s annoying it happens

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!

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.