*First, I use He/Him pronouns. Please respect my pronouns, as my gender is not up for debate :)

The past week before the appt, the arousal was constant. I was/am still having orgasms that easily go past the 15? min mark, too regularly through out the day. Of course, some days are better/worse than others.

At the Appt My Doc did an internal and external exam. Turns out i have damage to the nerve that starts with a P? ( idr) On top of that, most of the muscles inside my vagina are way too tight, causing them to constrict. (I like to say thats my body fucking itself 😀).

Treatment, Wooooooo Well at-least there are things I can do to treat this! Like… shots in my arse cheeks, A suppository that made it almost impossible to physically get out of bed this morning, and PT (eh that one i wont mind nearly as much).

Extra It has been 3 days since the first shots were fired into my butt. I feel dull pains shooting down my legs or in my hips sometimes, however, ill take that. I went over 12 hours straight without the arousal (night time into morning). meaning I didnt wake up with it. Definitely not as debilitating today. Today i was also able to have an orgasm that i let happen + Didn’t have any left over arousal!

It does suck and things might take a while but shit does get better ❤️‍🩹

I've calmed myself down, but I really need help because I am finally meeting a gyno for this.

How do I know if it's something directly related to my issue? Bc I find that I have alot of strangeness in my body aswell.

Things I've noted:

• numbness easily occurs in my bottom (but I kind of already had this before the Pgad-symtomes)
• stabbing pain (happens rarely however)
• Arousal discomfort (I need help wording this better, is tickle like sensations better worded? Idk I think they'll just say it's pubic hair)
• discomfort on clit
• Pain when opening the hood more wide?
• sensitivity
• twitching
• feeling the need to pee without letting out too much
• feeling the need to pee out more even when I'm already done peeing
• open like pain?
• pain kind by/in anus when genuinely aroused?
• pinching feeling (rare)
• no relief with "helping it"
• sometimes goes away, but stays for a long time ims so tired of this skjdjejeej
• doesn't rlly wosen with sitting, kinda gets better with walking.

I really am attracted to my friend. We are friends with benefits and he understands PGAD to the best of his ability. During my spontaneous orgasms, I let myself pretend that its him fucking me instead of my body. The problem is no matter what he or i do, we cant get me to finish. If i ever do have an orgasm i immediately get aroused after the climax. I cant even successfully give him a BJ because i was so turned on i had to stop because i had prolonged orgasm again. My brain either craves the idea of sex or repels it from my vocabulary.

i constantly think about how ridiculous the name is. someone comfort me. why do men ruin everything? who agrees? did not expect to be downvoted lol (btw i have been to the doctors who named this disorder and theyre not nice people)

Here is my story so far: I got my period at 10. I have had a high sex drive since i was 11 or 12. Over the years, due to PTSD, gender dysphoria, depression, lots of different types of chronic pain, and drug abuse. I used masturbation as a shitty way to cope. September 2024, i tried to end my life for different reasons. I ended up in residential for a month. Due to all the bs in my life i had no sex drive for about 11 days after i attempted.

While in residential, i worked on my mental health, and with that my sex drive was back. However, I never felt comfortable enough to masturbate because of the environment there.

I experienced my first spontaneous orgasm, while in residential. Iwas trying to go to sleep and i remember being in that semi-conscious state. I started half-dreaming/half-fantasizing about a sex scenario. It felt like the person in the dream state, was having sex with me. I could feel everything like it was happening to me. Before i had my first“episode”, I only had the unwanted arousal popping up out of nowhere, through out the day. After my first episode, i found that my clit and vaginal walls would flex involuntarily. (My clit is very sensitive due to the testosterone gel i take. For those who dont know, testosterone enlarges the clitoris and makes it more sensitive.) it was not the worst thing to deal with when u are in residential, however, once i was home, i had access to all my toys and it quickly became a problem. At some point in October 2024, my AD, Duloxetine (Cymbalta), got recalled. I was switched to Pristiq. i swear to god it made it way worse. I started to and still am getting intrusive SA thoughts popping through my head that corresponds with the episodes. Which is weird because I’ve never been SA’ed. It also started making the arousal constant at times. January 2025, as of today, i have the arousal feeling all the time. Plus, Will be at climax on and off throughout the day. I currently get panic attacks, or will dissociate during an episode. Other times i end up crying and having to hide moans. I am in so much pain, and ill i want is to be able to talk to someone about it. All i want is to be understood, all i want is for this to stop.

I have no intentions on ending my life but i constantly think about it. I am considering sh, but am really trying hard not to.

Thanks for listening

I’ve been reading a lot of stories on here of people discovering that their PGAD is caused by a slipped disc or pinched nerve on their spines. A few years ago I had an MRI and I was told everything was normal. Then I went to another doc that looked over the scan results and told me I had multiple minor disc bulges. Is it possible that even a minor disc bulge can cause PGAD? I’m considering going in for another scan since it’s been years and I’ve gotten worse over time.

Hi Guys

Just wanted to come and vent, having an awful time with this Pgad as i see many of us here do too, my legs hardly function now because of it, feels like all my lower half if plugged into an electric undercurrent and its disgusting.. all the Gps say here in the Uk, oh have this drug try this one and most of them just say " ive never heard of Pgad" What are we bloody well supposed to do? Then i hear of surgery's abroad and some successful ones.. most of the time if you just happen to be wealthy, but forthe most of us we are just normal people who would like to live a happy life, not get frustrated and thrown around the health system with waiting times as long as months and months mostly.. it is truly sad in this day and age, it really is that there are really a very few who could help.. what a mess. Just my take.

PGAD dr's are EVIL

Hi everyone, I'm new here, 24 nonbinary assigned female at birth, and I've been dealing with worsened PGAD symptoms since my period started. I feel like I've had low level symptoms of this for as long as I can remember but they never were too bad, but now it's like.....I can't focus on anything because of this constant nagging pressure feeling in my nethers....I feel like getting into certain positions too can trigger it, I can't lay on my belly and have my crotch press against my bed without getting immediately immensely aroused. It's becoming too much and driving me crazy. I need some relief. I have MS as well and I didn't know if that could be a potential cause for it too? I'm just....embarrassed and needing relief :(

Hello, my visits to the hospital/clinic are sadly always cancelled for some reason (doctor not being there) and my parents don't think it's anything serious. I can keep holding on but I need something to make me feel less overwhelmed 😔 (preferebly something over the counter.)

In a previous post, I mentioned that I would provide an update on the pelvic floor therapy I’m receiving. So, there it is.

To provide some background, this is my first attempt at treating PGAD, which I have had since I was around eight years old. I’m now 18 years old. The disorder is a struggle, but I’m okay. Despite the worsening symptoms, I have become better at being kind to myself and reaching out for support. 🫶🏻💐🌸

The physiotherapist determined that I had a tight pelvic floor. I’ve only had three appointments where the physiotherapist tried to stretch the muscles in my pelvic floor, but unfortunately, they are very tense and won’t relax. Therefore, the physiotherapist is limited in what they can do to avoid injuring me at the moment.

But hope’s not lost! I knew it would require work. I’m going to do pelvic floor exercises at home. ‘Cause perhaps my body will be less tense when I’m more comfortable. I’ll also try meditating to help my body feel more relaxed.

If anyone has questions, I’ll be here to answer them.

Also for inspiration. When did the PGAD did not bother you as much as usual?

I just want to vent because I feel so nasty right now and tired. I just want to cut everything below my torso off.

I was in pain last night and thought touching myself would help but as usual it didn't and I was stuck in an endless cycle where it felt like an itch that I just couldn't scratch, not only that but I was getting chills too. I wasn't even horny I just wanted the sensation to stop but even after I do orgasm if I can even call it that anymore, a few seconds later the sensation is back along with the pressure on my bladder. I get the pins and needles feeling in my feet along with tingling too but that's common for me in terms of the tingling and needles.

After I took a shower a few hours later is when the brown discharge showed up. I normally get discharge when the pain gets bad however it's usually clear but this time I did notice a tiny bit of blood but I assumed it's because I was rough and forceful with myself however this morning I used the bathroom and the brown discharge is there again although I'm not surprised because I woke up feeling like shit and whenever my pgad flares I get pain in my legs. It's funny because before this all started 3 years ago I was dealing with RLS ( restless leg syndrome). The last RLS only flare that I had was 3 years ago and it was the worse flare up ever so it's easy to remember, after that it all stopped then a year after is when this started.

I feel like I need to pee or someone is pressing on my bladder but I get no burning when peeing or any pain while peeing and I don't pee or feel like I'll piss myself if I'm not near a toilet simply because I know nothing will come out which nothing ever does. I sat on my heating pad and ended up burning myself but it felt so good and relaxing. It didn't make the problems 100 percent go away but it gave some sort of relief compared to what I was feeling before. I find stretching to sometimes help but sometimes it doesn't or it makes everything much more intense. I have decided to cut out sugar because that along with caffeine makes this so much worse.

Some months are good some months are bad.

I 23FTM haven't slept for a while so I apologise if my wording gets a bit funky.

I used to think that I was a nymphomaniac after having suffered with a porn addiction for most of my life and struggled with unwanted feelings of pleasure in my body. It's like I'm not horny or thinking about sex but I still feel this thumping in my clit and especially along my left leg, it comes with cramps often and the yearning need to masterbate/be pleasured. So I start to think about sex and want it constantly.

My previous partners would often compliment me for being able to keep going during sex and I've always struggled with never really feeling fulfilled after I orgasm, I thought it was a problem with my brain.

I can run my finger along smooth/clit shaped objects and it's enough to get a response from down there. I am extremely touch sensitive and reactive and have always struggled with these feelings. And finding out this might be PGAD was relieving at first, but now it doesn't feel as sexy. It feels frustrating and constant and I just want it to stop. So many hours of my life have been given to this freaking feeling and I've let it ruin me.

I have started becoming increasingly more frustrated, going between constant mastrbation and never wanting to touch myself again. Having my partner near me just makes me want to jump on him and sometimes he's horny for a bit, but nothing happens and because of this constant feeling its like he's unwittingly edging me. Then when we do get to that stuff no matter how many times I cum the feeling just keeps coming back.

I can't sleep, I don't want to think about sex anymore, or watch porn, but I'm so addicted to this feeling and I'm starting to hate myself for it. I don't know what to do.

I’ve had PGAD for my whole life. The past year it became 24/7. I’ve tried so much to get it to stop. Does anyone have any success stories . I’m at the point if this persists like this for the next few months without improvement, I will take my life.

Heya, second post in this subreddit I genuinely hate dealing with this so badly, I hate going out in public, I hate having the constant need of touching myself to feel relief for about 30 seconds before it comes back. I cannot wear certain types of clothing, tight clothing is hell. I constantly carry hand sanitizer with me because I feel disgusting when I go out in public, I am constantly paranoid and having to look around me all the time is not a way I want to live. I get so nervous if I don’t have the hand sanitizer with me and I constantly use it.

I hate having this fucking disorder. My gyno said it could be because of higher testosterone due to pcos, and she tried to give me progesterone to see if it would help and it did not, I hate everything about myself and I feel judged no matter what.

The arousal ish symptoms are gone, but they moved to my breasts. I hate this so much. Down there it just feels like I need to pee. What the hell is wrong with me please I just want to feel normal I don't care about arousal sex or anything else please just end it 😭😞

Hi, I was prescribed this but scared to take it. I took it 15 years ago and had a very bad experience. I like me and I feel I'll be different if I take it. My Stanford University Medical Center doctor said it was the only drug in the first line of treatment. Has anyone else taken it? Did it work? Did it change you?

I was getting people that I thought was from this group telling me that they are going through something similar but then the conversation becomes all about me.Sometimes they tell me they can help me so they ask for details but then the conversation becomes about my spontaneous orgasms and they don’t give a solution or any help.Then If they ask me something inappropriate and I don’t respond immediately they delete their account.

Do you have a history of

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Did any of your pgad symptoms begin after waking up from a sleep orgasm?and is it the same it’s always been or got worse over time?

I've been dealing with ongoing PGAD for a while and I'm surprised nobody seems to be mentioning these surgeries. If I could just have nothing down there (with the exception of a urethra, obv) things would be so much easier.

Something happened and I don’t feel right I don’t know if I have pgad but It’s 6:54 am and I have been feeling a climax level sensation since 5:00ish I genuinely feel like I’m gonna throw up. Please tell me this can go away please for the love of god I can’t take it anymore.

I think the only time I’ve ever slept through the night is when I’m severely ill.

Almost Every single condition that can cause PGAD I’ve been diagnosed with. That’s why it’s been so hard to treat. I’ve had so many different surgeries. I have Tarlov cysts, had tethered spinal cord, adhesions, endometriosis, pelvic floor dysfunction, congenital neuroproliferative vestibuldynia, labral tears, interstitial cystitis, keratin pearls, pudendal neuropathy, degenerative disc disease, spondylolisthesis, discontinuation of SSRIs

I’ve been trying treatments for years . Pretty much every med ever mentioned in these groups, as well as therapy. Now it’s been surgery after surgery every few months. But it’s just getting worse. I have never in my life have had a moment where I wasn’t in pain. But I can handle pain. Not PGAD I hate my spine so much. I was born missing so many parts or so many parts fused together. I think I’m doomed. I had so much life in me still at one point. I used to have hope. Now even if I do solve this, I won’t likely have a long life due to Klippel feil syndrome defects in my organs. It’s already been a long 22 years.

To make things worse , a reporter convinced / tricked me into revealing that I had this condition, and an article about me went severely viral last year. It got reposted to different articles all over the world. It demolished my social life and I was harassed and threatened endlessly for months. She put all my personal info in the article as well. I was naive to a lot of the questions she was asking me, and didn’t realize what I was being tricked into, until it was too late. But beyond that, the pgad just keeps worsening. 24/7 10/10 worst pain of my life. I just want a break

Just need suggestions, what helps?

I smoked some weed lastnight for the first time in 10 months and while I was high it helped but today my pgad symptoms have flared up so bad idk if cannabis has any correlation on making symptoms worse

It’s been 5 months of this 10/10 worse pain (PGAD) I’ve ever felt 24/7. Before that, everyday for at least 5-8 hours a day since march 2024. Before that at least 20 hours a week for my entire life. I could deal with it then. I can’t keep going with the 10/10 pain 24/7.

TW- Suicidal thoughts

I have these conditions causing PGAD

• Congenital neuroproliferative vestibuldynia (had 1 surgery, needing another one probably because the first one was only a partial vestibulectomy)
• pelvic floor dysfunction + pudendal neuralgia due to IFI impingement, FAI impingement, hip dysplasia, labral tears (bilateral) (had 1 IFI surgery, so far feel worse and still need 4-5 more hip surgeries)
• tethered spine cord that I had surgery on to fix July 2024 (was causing pudendal neuralgia in my rectum,which stopped after the surgery)
• 3 Tarlov cysts
• endometriosis, cystitis

PGAD became really severe a year ago after a long walk and run. Had it since a little kid though. It’s unbearable and I’ve tried to take my life multiple times. I feel more depressed than i ever have this past week and completely hopeless. It’s the worst pain of my life (the PGAD).

I feel so overwhelmed by all these causes. I’ve tried conservative therapy for years, now doing surgery every few months. But I have so many more huge operations ahead of me, and I’ve been in pain so long, I have little hope for the future of no (or at least very little) PGAD. I’ve become so depressed, but anti depressants make my PGAD much much worse so I can’t take any.

I’ve tried

• PT for two years and emotional therapy for 5
• pain meds (high dose opioids, nerve pain meds, edibles THC and CBD of different strains, steroids, MCAs meds, lidocaine cream, muscle relaxants, benzos.. taken orally, vaginally, etc)

-Dialators

• nerve blocks
• steroid injections

-massage therapy

• lidocaine injections
• ice
• heat
• baths
• distraction

I’m so miserable NOTHING helps at all except sometimes nightly @mbien . I want to give up. This condition is a nightmare and I can’t keep living with it. It’s only gotten worse and worse. It’s 10/10 most horrific pain I’ve felt, especially since Nov when I went on a long walk with my friend. Which makes me think the hips are causing it to flare at this point. They are torn all over, but I’ve had to do the surgeries one at a time. It’s going to take 1-2 more years to get all these surgeries done. I can’t imagine living another year in this much pain. If have no support system back home, no friends, my family hates me because I’m grumpy all the time and crying in my room.

I’m in so much pain I really can’t keep doing this. My life feels so so so over. Please nobody tell me to learn to live with this or accept it. I’ve had it my whole life and I can’t. If it at least wasn’t all day, every day, maybe.

I used to be able to get relief from massage therapy before the pgad worsened in NOV

My spontaneous orgasms in the last two days have intensified greatly and it feels like my vagina is pushing out of me and then I release fluid because it causes me to bear down.I don’t know if this is per or something else.

Hi everyone!

Just wanted to share a success story so you can know one is out there. I’ve had PGAD since age 22 and began to have severe flare-ups around 27.

I joined the subreddit in early 2024 and it was here that I learned that one of the most common causes of PGAD is disc herniation. I felt that was impossible since I don’t have actual back pain. But lo and behold, after having an MRI and discussing with a gynecological specialist and a spine doctor, it was determined my PGAD was most likely caused by a 9mm lumbar herniation pointing downward, towards my pudenal nerve.

I ended my running hobby and switched to swimming, began progressive muscle relaxation exercises and meditation, and now I haven’t had a flare up in ten months 🥰 I will never be fully cured as someone with degenerative disc disease, but my symptoms are vastly reduced. And now I have options like cortisol shots and nerve blockers if I injure myself badly again.

Don’t give up hope! We can cope and live and grow and heal. Continue to advocate for yourself until someone will listen. Thank you for existing, and the information you provide to each other and me here in this space 😊