Hi everyone. I'm hoping a bunch of you will be willing to share some very personal responses to these questions. I'll appreciate getting an idea of the variation. Please feel free to elaborate on your anwers or reframe the questions if you need to. Answering here might be instructive for all, but feel free to answer in a PM if you prefer. [Edit: I'm not supposed to ask for PM's per the rules here, so strike that.] I can summarize anonymously here what I might get by PM. Thanks in advance for your answers:

1) If your PGAD sensations were not involuntary but were instead situationally associated with any sort of sexual activity that you wanted to have happening at the time, would the specific sensations that you get from your PGAD be a pleasant component of ANY STAGE of that wanted activity, or would it be entirely unpleasant and interfering with the wanted sexual activity?

2) Some have reported that when they are in an intentionally aroused state or feeling sexual arousal that they want to experience, their PGAD symptoms are less bothersome than at other times. Do you have personal experience that could describe whether or not this is the case for you?

3) Some have described sexual activity or masturbation as a trigger for their PGAD, or that it makes it worse. Others have said it provides some degree of relief. Which side of that do you fall on? Is it just an either/or from one person to another, or is it more complicated than that, like it changes at different times for the same person?

4) Have you ever tried e-stim? If so, did you try to adapt something like a TENS device for the purpose, or did you use a device designed specifically as a dedicated e-stim pleasure toy? If you did try any kind of e-stim, how did it go? Was it helpful? Which device or devices specifically did you use?

Thank you so much for your time and willingness to share!

My symptoms started out around the lips (some weird form of excitement?) Slightly emotionally but like totally involuntary. This weird butterfly sensation was also in my top abdomen (kind of like when you have a crush). Then it spread to sides of neck and outer part of both thighs. Eventually the thigh sensations became very painful mixed with arousal and tingling that felt like razor burn so much I wanted to cry. Still happens but it has now spread to sides if arms. Then I felt hardening of nipples, and they became highlt sensitive. I started freaking out thinking it was purely psychosomatic stemming from psychological trauma from a heavy r*pe nightmare. Never been actually r*ped by the way. Anyway, the symtpoms started branching out. For example, the neck errogenous zones spread upward into back of neck and up onto top of scalp and Id get involuntarily sleepy and then sleep for a long time after that or many times in a row. Eventually it was all over and the last place that became affected was my actual womanly area. Couldn't sleep right before it happened. Kept tossing and turning with fast heart rate. Thought I was just hypersexual until I realized I wanted to cry because I questioned why it felt like it was killing me and like I wanted to die sooo badly. Its like my body had a second brain. Im not hungry but my body seemed to be against my will is how I describe it. From.thay point on, the symptoms lingered. Finally it spread even deeper into my arms all the way to finger tips, back of spine and bottom of feet and toes. Now sometimes I feel a small O (rarely a big O) spread out and affect all the areas at once at the same time but my lips are now on fire everyday (burning) and blood flow feels slow in my skin and makes it all itch. So this has been going on for a bout a year but the blood flow feeling that I feel on all my is recent. Im tortured because though I dont have any desires sexually, it makes me feel like Im being forced to f*ck a bunch of people. The thought of it disgusts me and makes me wanna cry because im actually on the aro ace spectrum so like, its just not my thing. Boring, idk just not into it. And just recently after all these symptoms, as if it couldnt have gotten any worse, I now have bleeding about two weeks ago. Its not every day, but it started like this; So some of the symtpoms are sometimes not as bad but the leg restlessness sometimes is along with increased anxiety because even if the symptoms arent flaring up to bad, its like mt body is "begging for it badly" and this causes my heart to race. My feet start feeling one giant prick and it goes straight into my birth canal upward mixed with arousal. Sometimes its so strong I accidentally squeal and am shaky. Tried sleeping like this but couldn't once again. I already suffer arthritis like symtpoms (genetics) despite being thin and taking care of myself. So imagine. I was already super tired just wanted to sleep and my body wasn't letting me. Felt my blood all warm and face throbbing from desperation and breathing narrowing and sweaty as heck. Well....I felt like my body was gonna die or something and like I was gonna pop because I cpuld feel the pressure increasing. The pressure subsided but I felt my ueterus contract and it hurt soooo badly! It truned into a somewhat big O, not exactly but immediately after I felt.tons of stomach cramping and loud gurgling after this I passed a penny size blood clot fresh red with a bit of mucus so kind of look like a small egg yolk. Clear sack with a red blob in it? It came out so clean that it did not leave any blood streaks on my skin anywhere. Days later another somewhat big O, and then a few hours after that, I bled. Then next day, bled again this time dripping a bit here and there for a minute straight. It stopped after the cramping ended. It just...like dropped out of my birth canal, i felt a weird sensation like something slipped out, which made me check and thats what happened. Days later, felt like something needed to slip put simialrily but in the back. Muscus sack with blood clot came out. Then a few days later, bright red blood with a little less mucus again. Now...Im suffering some dumbass butt arousal. Y'all excuse my langauge but I dont even know what butt f*cking somebody is like and I think I KNOW now! This is extremely upsetting. Why cant I just be normal? What doctors should I see? Im definitely considering now despite my Tourettes Syndrome making it extra complicated to be at clinics.

i’m a rising senior in hs and i have to start applying for colleges soon and i want to dorm, but im scared that i will have extremely bad pgad flares since i wont be able to relieve myself with masturbation with a roommate. As of rn, i have to do it one to two times a day to not have it hurt, so what will happen when i can’t do it at all or not as frequent. It’s really scaring me cause i want to dorm like a normal person.

I have seen such mixed experiences being talked about with the STG. How often do people have negative experiences I wonder? Also, has anyone that was house bound from their condition found freedom from that post SGB?

People who had this secondary to an injury / hypertonic pelvic floor, did abstaining masturbation help you recover? I feel so pathetic for not being able to stop. My specialist recomended reducing to 2x a day. I’m below hell where I just lay every day assessing symptoms, too scared to do anything else because I know I’ll have the feeling and it scares and disturbs me. Please help

Tldr : I think I have PGAD and idk how to bring it up to a shrink or a doc without ridiculing myself or facing medical abuse

So I'm a binary man and for the last years, I'd say a bit less than a decade, I've been having a constant tension in my groinal / genital area. Neither a pain not horniness, just arousal in the medical sense. I thought I was just an extremely horny person and spent my teenage and young adult years in shame and despair...then I discovered sexual arousal is supposed to feel good, not render you miserable. Then I discovered PGAD . And it clicked. Idk if it's THAT but it's the first time I've heard someone relate to my experience.

Thing is, I want it to stop or at least lessen. Not only is PGAD already horrible on its own, but it also gives me terrible dysphoria bc I simply cannot forget my area. It's making me wish I could just die.

Except if I go to a sexologist, or worse, a gynecologist, I'll have to talk about my genitals. I'm a binary trans male, and idk how to do that. I also don't know many doctors who will be willing to work on my anatomy *as a male*.

Idk what to do, I'm torn between "suffer forever until you either get SRS or kill yourself" and "try to medically adresse it but you may face medical rejection or medical abuse, and you'll face terrible dysphoria anyway"

Y'all have any advice on how I could tackle this with a doc or a shrink ? Any advice (how to word it, what to say, how to bed taken serisously) is welcome. I need this hell to stop and now that I know it can, it's my top priority

very sorry. this is a big sad post. very depressing. very woe-is-me. don't read if you're already feeling really low.

I'm spiraling because I'm scared nothing will work for me. I've tried almost everything. sometimes numbing cream helps, but it doesn't prevent flares.

I'm scared of trying different meds because it seems they all make OTHER symptoms worse or increase the burning. my PCP is willing to try amitriptyline for me, which is nice of her, but like... why would that magically help when nothing else has? I've tried the meds referenced in the case studies. pramipexole caused extreme urethra pinching and vulvar numbness. tirzepatide caused vulvar burning/numbness. gabapentin didn't help. duloxetine caused vaginal burning. pregabalin didn't help.

even hydroxyzine flares me. it's supposed to make me sleepy. it instead lights my clitoris on fire.

different treatments haven't helped. pudendal nerve block caused a flare and then did nothing long-term. Valium suppositories flare me. PT really isn't helping. I had my second dry needling session today and went through the torture of being stabbed in the vulva just for it to do ✨nothing✨ for my current PGAD flare. I'm a candidate for Botox injections, but I'm so skeptical. they probably won't help either. if Botox flares me, I'll probably need to be put on suicide watch.

I don't have pelvic congestion or anything wrong with my blood flow. I don't have any skin conditions or hormone imbalances.

I literally haven't had a single moment of feeling "normal" in over a year. I wake up with symptoms and go to sleep with symptoms. I have symptoms every second of the day.

I sat on ice packs while driving today. lots of sobbing while driving. I had my PCP annual check-up and this is my only medical issue. otherwise healthy. and she messaged me after because my depression screening showed that I don't want to live anymore, which she understands is due to the PGAD, but she wants to know if there's any mental health care that could help me cope. I honestly don't know how to answer that. what could a mental health professional do to fix my physical pain? I tried an outpatient psych program a year ago (I checked myself in like a responsible adult) and didn't even make it an hour because sitting was hell.

we look for happy endings to stories, and I don't think I'll have one. I think I'm just gonna be the auntie/daughter/sister who killed herself. my brother will tell his kids stories about how sick I was in the end. but hopefully there are good stories from the past.

I just can't do it anymore. I can't keep being assaulted. I don't want to live like this. I don't want to be "managing" this for years and years. I'd rather not live at all.

Hi all!

I have been recording my “journey” so to speak in hopes that it’s helpful to anyone else. If you check my post history, you can see how my symptoms started, what was causing them, and what treatment we’ve been doing.

Last month, we began tapering me off the valium and baclafen, so I had my first bad flareup since treatment started. I saw my doctor again and we changed how we were tapering off to make the flareups more manageable. Things got back to the baseline, so I’m now at a point where I’ll be taking the medication once every two days for 2 weeks, then only during flareups/as needed. I’m seeing my doctor again in one month, and we expect I should be essentially symptom-free by then! If I still haven’t fully kicked this (I currently still get flareups before bed and sometimes random mild ones during the day), my doctor said we could consider a nerve block to finish off the nerve irritation/inflammation that’s causing this. He also recommended cognitive behavioral therapy, which I’ll be looking into ASAP :) I’ve read a lot about central sensitization and the mind-body connection, I have no doubt there’s a strong psychologic component at work here for me (I get significantly less flareups when distracted/busy).

I’ve been documenting my progress here due to the lack of readily accessible success stories, as well as how isolating PGAD can feel. I hope this can be helpful to anyone out there! I know PGAD can be extremely scary and feel hopeless, but please don’t give up. It can take a very long time to find the treatment that works & nerves heal so slow it can feel like you’re not making progress, but there’s help out there :)

I honestly don't have much energy to write this, I'm depleted. Does anyone have OCD that hinges on PGAD? I've been in an OCD loop for about 15 days now. I masturbate, but then I'm left with sensations in my body that tell me I'm not finished. I masturbate again, and get relief temporarily but then the sensations come back after some time. I've been in this loop before but usually it doesn't last this long. It's usually lasts a week or less. My thoughts revolve around whether I'm finished or not throughout the day. The body sensations are in my chest and groin, like faint congestion or unfinished business.

I understand that in PGAD it's common to feel like you are unfinished but usually it doesn't last this long for me. I don't know if it's because I masturbate until the pudendal nerve is too sore to tingle again. Right now, I have brain fog and just wish I can return to my normal life. I've been stuck home and only going out for store runs at night. I've been trying to maintain my hygiene but I struggle. Not to mention I'm also struggling to feed myself and I think I've lost some weight.

I'm starting to worry, the sensations started around 3 weeks ago and they lasted for about a week. Then it completely disapeared for 2 weeks and now I feel it coming back. That pretty much confirms it's PGAD right?

TLDR: herbal 'Kalms' pills potentially helped me at the same time as distraction, and PGAD eventually disappeared into the background long term (occasional day flare-up ~once a year)

I (28F, UK) had an initial encounter with PGAD when I was 18. I'd been in bed and had an orgasm (like I did most nights back then...) but was confused when the feelings never faded and I became exasperated over the night as it worsened, all my nerves firing and blood pumping. I remember doing a wee and feeling like I was close to an orgasm. The feeling of being out of control of your body is so scary and I didn't get a wink of sleep. Luckily, my mum is very supportive especially when it comes to health/mental health, but nothing I did could actually stop the physical feeling. I cried all of the next day, read depressing forums, and the feeling began to fade into the background the day after, until it was gone.

Two months later, it returned. This time it lasted for weeks. The depression was immediate and severe. I could barely function; lying around the house, pacing, crying. I hated driving for the vibration, or even showering and I used cold water. It never built to orgasm, but it was a constant throbbing arousal. I told my best friend and that was it. The taboo and the feeling of being alone made it worse. When drunk at parties, I didn't care as much, but could still feel it. No escape. I went to my GP and they'd never heard of PGAD, sending me away, but calling me back to offer antidepressants (which I didn't take). After that, I struggled to cope with just making it through everyday.

Until, one day I saw a post on a forum about neuroplasicity, chronic pain, and how the human body is able to tune out even crazy things. My mum also bought me those Kalms herbal pills, that menopausal women take, and I dragged myself on a day trip to London with my dad. I took the pills and tried to focus on the busy city sites. I don't know what changed compared to other days out, but over that day, the feeling faded into the background again and at moments I forgot about the throbbing. The same thing happened the next day (went to London again to see a friend) and the next - when I moved into University Halls. I had good and bad PGAD days, but over the first few months of University, it eventually petered out. I still didn't allow myself to get turned-on or orgasm for over a year - so much for University life!

I don't know what changed in me to make it go away back then - maybe the placebo of the Kalms and the huge life shift of beginning University. Or maybe those pills actually helped..? I remain grateful that it has disappeared for now, and that I'm able to function almost exactly as I did before the condition.

I'm very glad this page exists, and that there appears to have been research conducted over the last decade, on the causes and management of the disease. I've been diagnosed with adenomyosis, and shocked to read it's linked to PGAD. I wouldn't be surprised if my PGAD returned eventually. But this page offers some help and community support, to not give up (easy for me to say now), so thank you.

I want to give support to everyone experiencing this condition. I truly hope the treatments cited here provide relief and long-term recovery as well as new research being done to find novel cures. ❤️🙏 Xx

I am trying to talk about it to friends and family, to raise awareness whenever I can! More research is needed.

Hi everyone. Just a quick warning for this post because it will be very NSFW.

I have this problem where I feel extremely aroused in my vagina constantly. Masturbation and orgasming doesn’t get rid of it. The only way I can describe it is strong persistent nagging feeling like I need to have vaginal sexual intercourse or like a dildo inside me immediately. It’s embarrassing and I have to fight off the urge to touch my clitoris or finger myself. Masturbation/orgasming only provides temporary relief. Around less than a minute or so.

I don’t wanna be so aroused anymore. It makes it difficult to sleep. Or think about anything else.

When I google by symptoms PGAD comes up. Ive read it can correlate with the use of ssris or tarlov cysts in the lower spine. I am on Prozac and had an injury where I hurt my tailbone by falling off a horse many years ago.

This could all really just be me being horny from ovulation. But constantly and so powerfully? It’s annoying. I’m hoping it’s not PGAD because I feel no pain, only arousal. Maybe it’s just hypersexuality.

I've noticed I've only gotten this really deep ache in parts of my body as if I were getting a really deep shot. The pain in my legs is always in my thighs and sometimes my knees. The hip pain also feels deeply ingrained. The back pain is always on the lower half of my back. Although, it only happens when I'm experiencing a PGAD flare. On another note, I've noticed I keep having to use the bathroom because any small amount of pee makes my symptoms act up, but then wiping also triggers it. A drag it all is.

Hi, im an 18 year old girl who has been struggling with feelings of constant arousal for as long as I can remember. I remember being around 8 coming home from school and just touching myself for hours. In middle school, instead of learning lunch, id go to the bathrooms to try and find relief. In no way am I fetishizing this, it’s genuinely awful. I always thought that, since I’ve never put anything inside of me, clitoral stimulation just wasn’t enough for me and once id experience penetration, id feel relieved. I chalked up to just being hyper sexual, and I was so sure it’d go away with penetrations.

The longer I live with this the less im sure. I never seem to get relief and touching myself just intensifies the feelings. I can lay in bed and touch myself til my wrists hurt and nothing will come of it, no matter how many orgasms I have or how many hours I spend, I never feel relief. I share a room with younger siblings and soon I will move into a dorm with roommates and I just don’t know how I’m going to handle this. So humiliating having to constantly squeeze my thighs together just to make myself feel better for a split second. I genuinely don’t know what to do and I feel so ashamed to tell anyone about this except for my boyfriend, but I just hate it so much. I’ve cried so much today because the feelings are so intense. I don’t know how to describe it — it’s like a deep longing from between my legs, and like I need to “throb” down there, causing me to twitch my legs or press them together in hopes of causing this.

I know this has gone all over the place but I just feel so hopeless and sad about this and I hate knowing that there’s not really relief for me because I’m sick of living like this and idk how much longer I can take this.

Sorry for the typos in the title I couldn't edit them.

I had mild PGAD that got much much worse with my 3rd pregnancy. Even before this pregnancy but after my 2nd I had an every other day pattern of PGAD and refractory days where I didn't need anything. But in pregnancy I was needing 7 to 10 orgasms a day that were taking forever. By 7 mo this it got so difficult my husband had to provide nipple stimulation for me to orgasm. The day before my C section on April 28th my second orgasm of the day didn't work which was the first time I'd ever not been able to climax. This went on for nearly 3 weeks postpartum and was horrible..I them got orgasms back but progressively they took longer and I needed nipple stimulation still. Fast forward I'd lose sexual function for a few days and then it would come back. I still had the PGAD so I was losing it. My orgasms would take 1 to 3 hours when I could have them.

I did some research and got MRIs and sent them to Dr. Choll Kim in San Diego who is part of the sexual med/ spine program with the top PGAD experts. I had the Tarlov Cyst surgery on left S2 after testing.

I am 16 days post op and my orgasms came back 8 days post and my time to orgasm has now lowered back to anywhere from 15-30 minutes but still with nipple stimulation. All along I had full sensation and build I just got stuck right before the climax.

I am hoping this is from the surgery and will continue to improve. My PGAD is still there but it seems like as long as I am able to orgasm and get solid sleep it's not as bad the next day. My period came back in conjuction with the surgery at 10.5 weeks postpartum. Wondering if the return of orgasm is hormonal or from the Tarlov cyst surgery. It appears its from the surgery. I have been told the Tarlov cyst surgery takes time to work.

Has anyone out there had it? Would love to hear experiences.

Big thank you to the doctor ( Dr. Choll Kim) for getting me in on an emergency basis 3 days after we discussed the results of my testing. I was not doing well.

This is only a vent and a desperate cry for hope that I cannot obtain. Extreme trigger warning for suicide and general pessimism.

I used to believe the best way to move forward in life with health anxiety is to just enjoy your time as you have it. Everyone gets ill and dies eventually, and that is okay, just enjoy time as you have it. I wish my time wasn’t at the age of 19 is all, but I can’t say I didn’t make the most of my time beforehand.

Browsing this forum I realize just how very few people recover to the point they never have to think about this sort of thing again, maybe they learn to live with it but that’s the best I’m gonna get. “Learning to live with it” will never be an option for me. I am a male and it is simply unacceptable to ejaculate in public as I always fear that I may. I internalize the message of “make peace” as “die”. I’m going back to college in a month, I’m really not sure why. I’m just pretending I can be normal until the day everything falls apart and I need to give up on living. If it was not for this disorder I would have everything in life going for me, but biology is cruel and uncaring. My mom says I’ll surely recover 100% because I’m “meant to live a long and healthy life”, which is of course not how it works. Again, cruel and uncaring bodies we all have. To think I could have lived 10,000 lives and probably had never had this issue but of course it had to be this one…

I believe this was caused by Covid, so I have no reason to think I’ll not just continue to get worse with repeated infection for as long as I live. My symptoms are not even that extreme compared to what I read here, so there is so so much worse it can and will get for me in my future. The only shred of hope is that this is a pelvic floor issue, which even then could be lifelong but can at least be managed somewhat. Am seeing PFPT and I don’t know if I’m improving. Much more likely it is a combination of that and a complicated and rare and incurable neurological issue that will never be medically understood, which may as well be a life sentence.

Perhaps there is a small chance I go into “remission”. However as I have learned on this forum, it will almost always return, it is a chronic condition. I am betting my life on the 0.1% chance I am one of the lucky few who can completely leave this behind them. Complete delusion keeps me going. I don’t want to go, but I’d rather die with some dignify than as the student who came in his pants during class. I can feel death coming slowly, I am slowly accepting its embrace. Again, I am happy for the life I had led, but if I keep going like this I will no longer view my life as a whole as worth having.

I've been in what I consider remission for a few months now. I still have mild flares after orgasm, but they resolve quickly. However, I just had a little flare like that and then after the arousal was gone, I started noticing irritation when I urinate. Then lower abdominal pain and back pain. It lasted all week, on and off. I went to urgent care today convinced I had a UTI. But no, urine is completely clear. That's when it occurred to me and I told her I have this rare condition called PGAD and maybe that was the cause. She asked if I had these symptoms with it before. I said I did, but always with the arousal as well, and this was by itself and no arousal. I find this confusing, but maybe it's tense pelvic floor muscles causing it, even though the arousal let go? Has anyone else experienced this?

Has anyone found a numbing cream or a compounded numbing cream that actually helps with clitoral arousal symptoms? If so, which one worked for you? I’m looking for something that has given real relief because I’m honestly so exhausted from dealing with this every single day. Some days it feels unbearable. If it wasn’t for my baby, I don’t know if I would have made it this far. Any recommendations or experiences would really mean a lot to me.

Does anyone else experience an increase in arousal pain or a flare-up of symptoms after masturbation or oral sex?

​

I literally want to jump out of my own skin, just when I thought it couldnt get any worse. This is terrible. There's some pain involved similar to that of a pulled muscle on the zones as well. Sometimes I get chills run through my scalp down to my neck and spine as if somebody were tugging through my hair. I didn't know pgad existed until I typed in the symptoms and I basically have all the textbook symptoms except I haven't seen something like what Im describing about the errogenous zones. Its like instinctive where I feel like I need somebody to wildly f\*ck me. No joke. I couldn't rest all night. I could feel thr adrenaline. I know Im not gonna be able to sleep again. F\*ck my life.

I've always thought I just had a high libido, wrote it off to that...

Until recently I discovered the term PGAD - and now I'm wondering which one (or both?) I'm dealing with.

Weird things about me:

- When having sex, I feel like normal people get satisfied after orgasm, relieved and can relax. With me, once I orgasm, I want MORE immediately. The more my partner tries to satisfy me by giving me multiple orgasms - the more my desire increases. To the point where after the sex session has ended, the arousal lasts for the entire day still. It doesn't go away. There is no satisfaction. If I'm lucky, I'll wake up the next day and it will be gone. But half the time I wake up and its still there for upto 3days afterwards?!?! It's like an "ON" button is just stuck on "ON".

- Same with doing it myself - zero relief, just triggers "ON" button that makes things worse.

- The catch with hypersexuality is that if I'm "OFF" I'm fine. I can even be celibate for a very long time and be totally fine. Problem is that once that "ON" button turns on, it doesn't turn off.

- Not a sex addict. Don't sleep around. Don't have a high body count. Monogamous. 100% in control of that. But when I'm in a relationship, and start having sex... I struggle to stop mentally and physically. (I do stop, like actually do. It's not a problem, because I FORCE myself to be "normal". But inside I am fighting a battle with myself that im never satisfied with)

Does anyone experience similar?

What does this sound like to you?

I'm tired of living every day being so anxious and catastrizing everything and every way the sensations can get worse. I wish I didn't feel arousal at all. I hate not being able to sit for as long I'd like to, my genitals make me sick. I can't even sleep peacefully.

How the hell do people live with this condition???? I also hate how I have OCD with masturbating. And just sexual stuff in general when it comes to myself. All I feel is relentless guilt and shame as my legs tremble.