22F, been dealing with this since I was around 8–9 years old. Basically, I get this constant urge to rub my clitoral area, but it's not sexual in nature at all. It usually happens when I'm stressed or anxious about something.

I've tried looking this up so many times but haven't really found anything that explains what I'm experiencing. I came across childhood gratification syndrome, and some of it sounds similar, but I'm not sure if that can still apply to someone experiencing this in adulthood.

I also looked into PGAD, but I'm confused because I don't really experience the spontaneous sensations or triggers that other people seem to describe. For me, it's mostly a throbbing sensation and an urge to rub the area when I'm stressed.

Lately, it's gotten a lot more frequent because I've been dealing with more stress while staying at home and preparing for competitive exams. It's genuinely starting to interfere with my daily life, and I'm struggling to manage it.

Has anyone experienced something similar, especially if it started in childhood? Does this sound like it could be PGAD, or could it be something else entirely?

Also, if anyone has sought professional help for something like this, what kind of doctor or therapist should I look for? A gynecologist, psychiatrist, psychologist, or someone else?

I'm not trying to self-diagnose through Reddit. I just want to figure out what direction to take because this has been going on for years and it's getting harder to deal with.

Just diagnosed with Heds..I have pgad...Any connections???What do you do for this?Does it take forever to reach orgasim?Numb feeling too???Female here.

My illness was caused by SNRI discontinuation/withdrawal. I have tried many things with no relief. Going on my second botox appointment... Anyone tried it? Still, no relief from the first one. They mixed it with lidocain btw.

UPDATE: They used a SIS machine. Electromagnetic pulses over clothing on top of the affected area. I am still flaring now but it's slightly less bad... idk, pain is a 6/10. The small shocks/contractions kind of hurt but nothing unbearable.

I had PGAD when i was ejaculating during a masturbation 13 years ago. I was in prone position, rubbing bed for pleasure. So, with my whole weight pressing penis at the moment, it felt like pelvic floor muscles sticked my penis out for that ejaculating but didn't manage to return to its orignal place. right after that moment, I felt like there's still some cum inside urging to get out. but this urgency seemed faded away over the years. its the other two symptoms that constantly exist 24/7 and make me suffer:

1. always feeling myself on the verge of ejaculating (particularly serious in the first few years);

2. always feeling i can't control my penis, like its sticking out of my body but i have to (involuntarily) want to squeeze pelvic floor muscles to bring them back.
   Note: I don't feel flares come and go, like some other posts here. I feel these symptoms all the time.

Over the years. I went to many hospitals and tried as many treatments as possible. Most doctors in my country haven't heard about this disorder and it even seems not single one examining method (CT, MRI, etc)can see anything wrong, both physically and mentally. so often they waved me off or prescribed me medications to cure prostatitis, flammatory, or somethine else. One urologist recommended to referral me to pain clinic where we could use trial and error. as of one year before now I'd tried Pregabalin, Skeletal muscle relaxants--Eperisone; Tizanidine; Baclofen, Medication for smooth muscle / bladder function--Mirabegron extended-release tablets, benzodiazepine--Clonazepam, Deanxit, Esketamine injection, lidocaine patches, Pudendal nerve block(S3). Only Tizanidine seemed to partly work, but only for the first several days and that i can't contol my penis always existed.

The only one time i felt all the symptoms completely gone was one masturbation one year ago. That day i masturbated four times, and that one is the fourth. i did it because i was feeling so hopeless. it lasted for about 10 minutes. Then, it felt like penis went back to sticking out and relief started to disolve, like most other masturbations, only this time the relief is a hundred percent. This gives me hope. from that moment on to this day, I desperately tried to emulate, considering every detail i've beening missing about that one masturbation experience. But unfortunately I haven't experienced this any more, not even once. just some elevated relief moments.

There are indeed two main differences in that masturbation, in retrospect. The first easy one is a four-time masturbation. I had rarely masturbated more than twice a day. From the four-time masturbation days i experienced later on, it always feels like the first time is like a warm-up, penus not getting hard enough or i felt not aroused enough. the second and third is getting close, but never reach, and the last one i feel a bit exhausted. ugh,,,, Secondly, I basically stroke penis to ejaculation, with no other motion. but in that masturbation, i stood up from a chair right before ejaculation, simultaneously moving body(pelvic, hips) forward and upward. i could feel some muscle at pelvis moving relatively. This is the main thing i want to try. but it seems every time i stand up, i feel like the tense in the pelvic muscle gets eased, so i can't use that tense/stress to press penis back, and penis only moves forward with its body. About 2 week after that masturbation, i moved to another apartment, which has a higher chair, i don't know if it could be the reason,like so many other seeming things.

In the past year, the masturbations which got the most elevated relief are the ones that penis got very hard, that the farthest body can move forward relative to penis with pelvic floor muscle tensed, and that the most vibrant body ride back and forward, seated or standing, before ejaculating. Distraction is a big problem, like touching desk, chair, or moans or any noises makes me worry about getting roommates know what i'm doing, or cold weather, etc, any thing that distracts me make me lost that tense at the moment. Use hands to push penis inside could get some extra relief sometimes. but it feels most time some structure block the way in if i only use pushing. Maybe use some combination like doing the riding action better. nevertheless, it always feels like getting close, but never reach.

I don't know if it's the right direction. Masturbation as a cure sounds ridiculous. And from what I read from this community, people have very different causes, symptoms, and relief methods. The only way i completely relieve all my symptoms is one masturbation experience, for like 10 minutes.

Does anyone have similar experience? what could be possibly done if PGAD results from genitals sticking out of its original place?

For more than ten years, I suffered from Persistent Genital Arousal Disorder (PGAD). I began experiencing this condition at a time when hardly anyone knew what it was. Instead of receiving understanding, support, or proper medical care, I was often met with ridicule from doctors. The humiliation and despair became so unbearable that, at one point, I even considered suicide.

My PGAD was extremely severe. I experienced multiple orgasms every day and countless episodes throughout the night, even while I was asleep. Every vibration was torture. I could not sit in a car because the slightest movement could trigger unbearable symptoms. I could barely walk, sleep, get dressed, or have a normal conversation with another human being. I could not wear ordinary clothes. My entire life came to a standstill.

I began searching everywhere for answers. I saw doctors in different places, and virtually all my money went toward consultations, examinations, and treatments. My family spent its money, too, desperately trying to help me find a solution. Over the years, I consulted more than 500 doctors.

I tried virtually everything imaginable. I took psychiatric medications and neurological medications. I underwent nerve blocks involving the pudendal nerve, the hypogastric nerve, the ganglion impar, and several other nerves. I tried laser treatment in the genital area, magnetotherapy, biopsies, and countless other interventions.

I even underwent clitoral hood separation, a procedure that resulted in necrosis and the loss of my entire clitoral hood.

I searched for every possible disease that might explain my symptoms. I kept looking, hoping that someone, somewhere, would finally understand what was happening to my body. But after years of suffering, endless medical appointments, and treatments that failed to give me lasting relief, I eventually reached a point where I had to stop searching in the same way.

Instead, I asked myself a different question:

What was the one thing that had ever helped me, even slightly?

The answer was fluconazole and baths with sodium bicarbonate.

That observation made me wonder whether fungi could be involved in my symptoms, particularly because some fungal infections may not be detected by routine cultures. I began studying the subject and exploring the possibility that an underlying fungal process might be contributing to my PGAD.

Eventually, I decided to try an approach based on that hypothesis. I began taking NAC daily, fluconazole 150 mg once a week for 6 months, and Lactobacillus plantarum daily. I also used boric acid suppositories, initially for 14 consecutive days and then less frequently.

I want to be clear that this was my personal experience and my own attempt to find relief after years of unsuccessful treatments. I am not presenting this regimen as a medically established treatment or recommending that anyone reproduce it without appropriate medical guidance.

Today marks one full year since my PGAD began improving so dramatically that it has almost disappeared.

I still do not know exactly which fungus, if any, may be responsible for my symptoms. I do not know whether a particular organism is involved, why it might have developed, or what mechanism could explain the improvement I experienced. I cannot claim to have scientifically proven the cause of my PGAD.

But I know what has happened to my life.

For at least 20 days of each month, I am now almost entirely free of PGAD. My symptoms tend to return mildly before my period, which has made me wonder whether hormonal changes and vaginal pH might play a role in their recurrence. This is still only a hypothesis, but it is an observation I cannot ignore.

The difference is extraordinary.

I can get dressed. I can walk. I can move without constantly anticipating pain and unbearable sensations. I can sleep. I can interact with people. I can have a life again.

Before this improvement, I was not truly living. I was merely trying to survive each day, trapped in a body that seemed to offer me no escape.

After more than ten years of suffering and consultations with over 500 doctors, this was the first approach that gave me such a profound and sustained improvement.

I am sharing my story because I know how isolating PGAD can be, especially when people do not understand the condition or dismiss what we experience. I know what it feels like to be desperate for answers, to spend everything you have searching for help, and to wonder whether you will ever get your life back.

I am not claiming that fungi cause every case of PGAD. I am not claiming that my approach will work for everyone. PGAD may have different causes in different people, and my experience alone cannot establish a diagnosis or prove a treatment works.

But I believe that my experience deserves to be heard. I believe that the possibility of an infectious or fungal contribution to symptoms like mine deserves careful scientific investigation, rather than dismissal.

After everything I went through, I cannot remain silent about the improvement I have experienced.

I may not have found all the answers, and I may not be completely symptom-free. But after more than a decade of unimaginable suffering, I have finally found a way to live again.

And for me, that has changed everything.

?

Me la paso sola en mi Pieza, no salgo a la calle si no es para ir al Médico, me he quedado prácticamente sin amigos, siento un sufrimiento y angustia indescriptibles, sospecho que mi PGAD tiene un origen sicológico además de físico, porque he sido abusada sexualmente muchas veces en mi vida. Alguien más tiene esa sospecha? Siento que mi cuerpo y mi sexualidad ya no me pertenecen, sino que son de todos… No sé cómo han hecho para aguantar tantos años con el PGAD. Yo tengo TOC y eso solo empeora las cosas, no se imaginan la cantidad de tonterías que pueden pasar por mi mente y cómo mi TOC y mi PGAD me están convenciendo de que soy una horrible persona 🥀

I need to update my original post but here it is anyway https://www.reddit.com/r/PGADsupport/s/JFqfi9RDgA I've legit tried pretty much everything for PGAD. I don't really know if there's anything else out there for me to try. I'm desperate.

current worst symptom: I'm being woken up out of my slumber by burning, painful orgasms/contractions of my pelvic floor that are focused around my clitoris. I feel like I'm being raped in my sleep. I fucking hate this body. I'm so traumatized. please help. does anyone else have this specific symptom, and if so, what has helped? I'm strongly considering going back on an SSRI but idk if that would make it worse.

a doctor brought up "centralization" of pain BUT I think he meant "central sensitization" instead. I've looked into this and I feel doomed.

TL;DR ABOUT THE AI PART BELOW:

I do use ChatGPT to help organize my writing because of a temporary brain injury, but I am NOT copying posts/comments into it without reading them and blindly hitting reply.

I have hyperlexia, which means I read and skim very quickly, so I personally read what people write, decide what I think, and then voice-text my response into ChatGPT to help clean up the wording.

Honestly, even before my brain injury I was a rambler. 😂 Friends and family have told me they can finally understand/read my longer messages better now. I’m still working on shortening things up, but this is an accessibility tool for me, not a replacement for my thoughts or personality.

QUICK DISCLOSURE BEFORE YOU READ:

Please give me a chance and hear me out. ❤️ You obviously have the choice whether you want to read something written with AI assistance, and I’d rather tell you upfront than have anyone feel like they were unknowingly talking to a bot.

I have a temporary brain injury that affects my memory, word order and ability to organize what I’m trying to say. I use voice-to-text for almost everything. If I simply dumped my raw voice-to-text into Reddit, there are times people genuinely would not understand what I was trying to say.

Reading is different for me. I have hyperlexia and can still read and skim extremely quickly. I personally read the posts and comments I respond to, do my own research, decide what I think, and voice-text what I want to say. I am NOT putting someone’s post into ChatGPT and hitting “reply.”

ChatGPT is an accessibility/writing tool that helps reorganize my jumbled wording into readable sentences. It actually takes me quite a bit of effort to voice-text everything into it and make sure the final version still says what I mean.

For perspective, I started working on THIS post around 6:00 and it’s now about 6:42. I’ve been researching the information myself, checking details, rewriting parts, and even spent time finding a real, non-AI medical image that could apply to both men and women with PGAD/GPD.

So yes, the writing is AI-assisted. The experiences, research interests, opinions, questions and person behind it are me. If that still isn’t something you’re comfortable engaging with, I completely respect your choice. ❤️

LONG POST — I put a TL;DR at the bottom. ❤️

I wanted to make an educational/discussion post about PGAD/GPD, because the more I learn about this condition, the more I realize how misunderstood it still is — including by some of us who actually live with it.

I’m 41 now, and I believe my symptoms started around puberty, somewhere between 9–12 years old. I remember having unexplained throbbing/arousal-like sensations before I even understood what sexual arousal really was. For years I interpreted it as something sexual because I didn’t know there could be a medical condition causing genital sensations when your MIND isn’t sexually aroused.

That distinction is huge to me. We know when we mentally want sex or are sexually excited. PGAD/GPD sensations can happen completely separately from that.

I didn’t learn that PGAD was actually a recognized condition until I was in my early 30s, probably around 2017–2018. One of the things that opened my eyes was an old Discovery Health/TLC program called Strange Sex.

The original special actually aired way back in 2009 and included Persistent Genital Arousal Disorder, and TLC later turned Strange Sex into a series.

I know television was different then and maybe the intention was partly educational, but looking back, I honestly hate that PGAD was packaged under a title like “Strange Sex.”

It isn’t “strange sex.” For a lot of people it isn’t sex at all.

PGAD was first described medically in 2001 under the name Persistent Sexual Arousal Syndrome (PSAS). In 2006 the terminology shifted to Persistent Genital Arousal Disorder (PGAD).

Now you will increasingly see PGAD/GPD:

Persistent Genital Arousal Disorder /

Genito-Pelvic Dysesthesia.

I actually appreciate the GPD terminology because the word “arousal” can give people completely the wrong idea. GPD can include throbbing, tingling, buzzing, burning, twitching, pain, pressure and other abnormal sensations in the genital/pelvic area. It does NOT necessarily mean somebody is mentally sexually aroused.

PGAD/GPD can also affect men.

One story that has always stuck with me is Dale Decker from Two Rivers, Wisconsin — which especially caught my attention because I’m from Wisconsin too.

His symptoms reportedly began in 2012 after he slipped a disc in his back. He eventually spoke publicly about experiencing as many as 100 unwanted orgasms a day.

Think about that before joking that somebody is “lucky” to have this.

He talked about being unable to work normally, being afraid of having episodes in public and essentially becoming housebound. Something most people associate with pleasure became completely debilitating.

Another story I will never forget is Gretchen Molannen.

She reportedly lived with PGAD for around 16 years. She struggled to work, applied for disability and was denied, and ultimately died by suicide in 2012.

I don’t want to reduce her death to one diagnosis or claim that her disability denial happened specifically because PGAD wasn’t in the DSM, because I haven’t found evidence proving that.

But PGAD still is NOT its own standalone diagnosis in the DSM-5-TR.

It IS now recognized in ICD-11 under “Other Specified Sexual Arousal Dysfunction,” which at least shows that medicine is slowly catching up.

What also breaks my heart is how PGAD patients have historically been treated.

Women have reported finally getting enough courage to explain this incredibly embarrassing condition to a doctor, only to hear things like, “I wish my wife had that.”

Imagine being unable to work, sleep, sit comfortably or concentrate because your body will not stop producing unwanted genital sensations, and somebody responds like you just described having an amazing sex life.

THAT is why people are afraid to ask for help.

There’s another example that has stayed with me for years, although I want to be very clear that this one is from my own memory and I cannot currently find the clip online to independently verify it.

I’m in a private PGAD Facebook group, and there is a young woman there who has struggled terribly with this condition and has gone through multiple procedures and surgeries trying to get relief.

Years ago, I personally saw a news article about her. There was a picture of her in a hospital gown during another hospital visit, with her phone resting in her lap near her pelvic area.

I also personally remember watching a clip from a popular late-night comedy show where that picture was used and the joke was basically that all she needed to do was move the phone lower and let it vibrate.

I’m deliberately not naming the woman, and because my brain injury affects my memory, I’m not going to name the comedian when I’m not 100% certain I remember correctly. I also can’t find the clip publicly now.

But I remember how much that bothered me.

This was a young woman who was in a hospital gown because she was suffering and trying to get medical help, and her condition was reduced to a vibrator joke.

That is exactly what happens when people hear the word “arousal” and assume pleasure, horniness or sex instead of understanding that PGAD/GPD can be a neurological, pelvic, medication-related or other medical problem that someone desperately wants to STOP.

At the same time, I do have some empathy for doctors who genuinely haven’t heard of it. PGAD was only formally described in 2001. There are doctors practicing today who finished medical school before this condition even had a name.

That does NOT excuse laughing at or dismissing a patient. But it does explain why sometimes WE end up having to walk into an appointment already knowing the terminology and asking for the right referrals.

The newer research also makes something else really important clear:

There probably isn’t one single cause of PGAD/GPD.

Experts now look at possible problems involving different areas — the genital/end-organ area, pelvis and pelvic floor, peripheral nerves, cauda equina/lower spine, spinal cord and brain. Medication effects can also play a role.

So when someone here says, “THIS is what causes PGAD,” I think we have to be careful. Something may have caused THEIR PGAD without being the cause of yours.

Treatment is the same way.

There currently isn’t one medication specifically approved to cure PGAD/GPD. Depending on the suspected cause, doctors have tried different off-label medications and treatments.

The medical literature includes things like clonazepam, gabapentin/pregabalin, certain antidepressants, and diazepam or baclofen suppositories in some people with pelvic-floor involvement, along with pelvic-floor physical therapy and other treatments.

And here’s where this disorder gets even stranger medically: some medications that HELP one person’s PGAD may trigger or worsen symptoms in somebody else.

There are documented cases involving SSRI/SNRI use and withdrawal.

That part really interests me because of my own history.

I’ve taken prescribed clonazepam off and on since my early 20s, and I’ve been taking it consistently for about six years now. Mine is prescribed for anxiety/panic/agoraphobia — NOT for PGAD.

But completely accidentally, I discovered that it suppresses my PGAD symptoms tremendously.

If my worst flare is 100%, I would estimate that on clonazepam I’m usually closer to 20%.

It clearly isn’t fixing whatever is causing my PGAD. It’s turning down the volume.

I also have a past substance-use disorder, and I’m clean now. One thing I noticed repeatedly was that withdrawal could make my PGAD absolutely explode — whether I was withdrawing from opioids or, years ago, misusing/coming off benzodiazepines.

And PLEASE do not abruptly stop a benzodiazepine based on anything I’m saying. Benzodiazepine withdrawal can be medically dangerous and can cause seizures.

During really severe PGAD flares, I’ve tried to orgasm because my brain thinks, “Maybe this will finally make the sensation stop.”

Sometimes I couldn’t reach orgasm at all.

Other times I could, but the relief might last a couple of minutes and then the sensations would come roaring back — sometimes worse.

That is actually recognized with PGAD/GPD too. Orgasm can provide temporary relief, no relief, or sometimes make the symptoms worse.

And this is where I need to admit that I have to start taking my OWN advice. 😂

I’m constantly telling people here, “Please talk to your doctor. Ask about pelvic-floor physical therapy. Ask about nerves. Ask about your spine. Review your medications. Ask for referrals.”

Meanwhile, after all these years, I still haven’t had a proper PGAD/GPD evaluation myself.

I need to.

Part of why I spend so much time in this group is because I’m on disability for mental-health reasons, especially agoraphobia, so sometimes I genuinely have an hour where I’m sitting here reading PGAD posts.

I’ll occasionally see somebody post something really vulnerable and two days later nobody has answered them.

Nobody here is obligated to respond to every post, obviously. But I remember what it felt like believing there was something sexually “wrong” with me before I knew this condition even existed.

So if I know something that might help someone feel less alone, I try to answer.

I’m NOT a doctor and I definitely don’t have all the answers. Most of what we currently know about PGAD/GPD still comes from relatively small studies, case reports and expert consensus. That means we need to be especially careful about presenting one person’s experience as everybody’s answer.

More than anything, I would love to see this community keep becoming a place where people can compare experiences WITHOUT shaming each other and without treating PGAD like a sexual joke.

I also genuinely hope we eventually see even greater formal recognition of PGAD/GPD in diagnostic systems like future versions of the DSM. ICD-11 recognizing it is progress, but awareness among providers is obviously still nowhere near where it needs to be.

So I’m curious about everybody else’s story:

When did your symptoms start?

How long did it take before you learned PGAD/GPD was actually a condition?

Before you knew the name, what did you THINK was happening to you?

Have you received an official diagnosis yet, or are you still trying to find somebody knowledgeable enough to evaluate you?

Has PGAD/GPD ever affected your ability to work, go to school, drive, sleep, have relationships or simply leave the house?

Have you ever had a doctor dismiss you, joke about it, or send you somewhere that made you feel like they thought this was just about wanting sex?

And for anyone who HAS found a knowledgeable provider or something that genuinely helped — what was that process like?

I think hearing how different all of our stories are might actually teach us something. ❤️

TL;DR:

PGAD was first described medically in 2001 and is now increasingly called PGAD/GPD — Persistent Genital Arousal Disorder/Genito-Pelvic Dysesthesia. The newer name helps emphasize that this is not simply “being sexually aroused”; it can involve unwanted throbbing, tingling, burning, buzzing, pressure, pain or orgasm-like sensations without sexual desire.

There probably isn’t one single cause or treatment. Possible contributors can involve the pelvic floor, nerves, spine, brain and medications, among other things. There is no one approved medication that works for everybody.

I’ve had symptoms since around puberty but didn’t learn PGAD had a name until my early 30s. My prescribed clonazepam happens to suppress most of my symptoms, while withdrawal has caused some of my worst flares — but I still need to finally take my own advice and get properly evaluated.

I’ve also seen firsthand how people with PGAD can be turned into jokes, including one young woman whose hospital photo I personally remember being mocked on a late-night comedy show. I cannot currently verify that old clip online, so I’m intentionally presenting that only as my own recollection.

Main question: When did YOU realize what you were experiencing had a name, and how long did it take you to find help?

just trying to figure out if there's a correlation between when I take melatonin for sleeping and when my symptoms get worse. I'm not 100% convinced, but anything's possible. wondering if anyone else has noticed anything related to this with their own symptoms.

I can’t go into the details fully but 6.5 years ago developed pgad from a mixture of ativan taper getting rocky at the end and trying Trazadone for sleep but it settled to just mainly anal area luckily. I only had penis issues the very first week.
Nothing helped then after two years pain developed but very lateral and my symptoms didn’t totally match pn. I discovered the perineal branch of the posterior femoral cutaneous nerve was my problem. One block was so successful that i was considering a neurectomy to help my sitting pain and help pgad. One last block caused a severe pain flare and they put me on cymbalta even though it made it worse in the past. I thought maybe give it time. Pain control good, pgad horrible and was drinking alcohol daily to cope.

Did a foolishly rapid taper in June after 7 months on pill and caused a bunch of horrible new neuropathic issues but the pgad dropped to like a 1/10 it was great but my withdrawal was so severe I wound up in a psych hospital and they made me take Lexapro again. Within two days it came back but hit all branches of the nerve including penis and now with that branch I am at 10/10 mainly at night.

I caused myself so much withdrawal damage to get relief and now worse off!! and this is chemical nerve damage so I don’t think there is any chance of other treatments helping. My SI and functioning is horrible. I stopped the med a week after discharge but it has stayed although at least the burning stopped. Tried baby dose of mirtazapine for sleep for a few days and started getting arousal so strong my nasal passages swelled. I can only pray the nerve heals.

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?

Hi everyone. I posted on this group a few months ago firstly in May. I am 25F. I triggered a month long flare, my first one, after over masturbation. After that month long flare I haven’t had bad flares since, I’ve been very cautious about masturbation. Unfortunately I forgot about how bad it used to be and over masturbated again and I have a flare as bad as my first time. I am going on my first 1 week+ holiday with my boyfriend in 4 days and I’m scared. I’m scared if we have regular sex this will damage my nerves for a long long time and I’ll have a worse flare that lasts longer than a month. Does anyone have any advice? And don’t say don’t have sex because I don’t think that’s possible for us. I just am scared with my condition how this will affect things and I don’t want to not enjoy my holiday because I am so uncomfortable. The sensations I feel are intense pressure, prickling, arousal, throbbing, and sometimes pain.

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?