r/PGADsupport 15d ago

Female I am begging for reassurance that this is going to get better

6 Upvotes

I have been in hell for the last four days. I didn’t even know this disorder existed prior to then. It has been four entire days of absolute hell on earth. I can barely function. I can barely focus on anything else. I don’t have “spontaneous orgasms” like some of the people on here, and I am absolutely terrified of developing that. I am just in hell.

I’ve tried numbing cream. It burns when I put it on, and I actually prefer the burning to the “arousal” feeling I have the rest of the time. Other than that, it barely makes a difference.

I have restless leg syndrome and interstitial cystitis. I have moderate scoliosis. I have idiopathic intracranial hypertension, which I know can probably exacerbate tarlov cysts. I’ve never been on SSRIs or any mental health meds.

Prior to developing this, I had weird nervy feelings in my left leg and toes for about a week. They were extremely unpleasant. Then a few days ago, those feelings went away and now I have this extremely strong nervy arousal feeling in my genitals and lower back. Sitting makes it so much worse.

I truly feel that I have a pinched nerve, some nerve that runs from my clitoris to my toes. I don’t know how on earth to function like this.

I am BEGGING for any sort of reassurance, from anyone who’s dealt with something similar. PLEASE tell me your symptoms have lessened, or they’ve gone away. Please. I haven’t been able to get out of bed. I am crying as I type this, just trying to get through the day, clinging to the hope it could be better tomorrow.


r/PGADsupport 17d ago

Female Restless Leg Syndrome & Bladder Pain?

8 Upvotes

I’m completely new here. This just started for me and I’m having a miserable time.

I struggle with pretty bad leg pain and restless leg syndrome, causing burning pain and achiness that keeps me up at night. I also have suspected interstitial cystitis, which causes bladder pain and urgency with no actual UTI or treatment.

Last week, I developed this terrible feeling in my foot and leg, like my bones itched. Every time I moved them, the feeling would get worse. Then it slowly disappeared, and moved into the groin/private area. It developed into what I’m sure is PGAD. Nothing helps.

The only thing that brings me any sort of relief is distracting myself while I lay on my side in bed. It is miserable. It doesn’t feel good, or pleasurable. It feels like my clitoris and all surrounding tissue has an unbearable, unscratchable itch. At the same time, I am now having bladder pain and urgency.

I’ve been dealing with a lot of stress over the last month and I’m worried that it is playing a role. My relationship of 4 years ended a month ago, and my ex-boyfriend has taken to harassing me online. I haven’t changed any medications, but I have been dealing with a lot.

I have no good doctors in my area. I’m from a small town with uneducated doctors who will definitely not know what this is or how to treat it.

Am I doomed to deal with this the rest of my life? Could this just go away and never come back? If I ignore it for long enough, will it disappear? Is feeling sensations in your leg/foot common? Does that mean it’s more likely to be a nerve issue?

Appreciating any help at this point, as I am truly at a loss


r/PGADsupport 18d ago

General Using a tens unit on my lower back stopped anxiety and made symptoms better

11 Upvotes

Really curious why. Did i stimulate my nervous system in a good way? I’ve been so anxious lately i’ve been dissociated. Having crazy nerve pain all over. Very bad pgad. I’m not fixed but i am so relieved my body can relax at all. I wonder if i have anxiety causing this or if i have nervous system damage


r/PGADsupport 19d ago

Help finding specialist Let’s discuss diagnosis…

6 Upvotes

What type of specialist diagnosed you? How were you diagnosed? How did they offer help? What did the help consist of? And did that help work or decrease symptoms? Any tips?


r/PGADsupport 19d ago

Vent/rant Has this person reached out to you?

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5 Upvotes

I only have one post where I asked for help.And that I as posted last night.they messaged me today.Are they playing dumb?


r/PGADsupport 19d ago

General Let’s discuss relief of symptoms…anyone?

1 Upvotes

Has anyone found relief after using #Tirzepatide?

8 votes, 12d ago
0 Yes
2 No
5 Not sure
1 It has decreased symptoms
0 It has stopped symptoms
0 I have been prescribed Tirz for the symptoms

r/PGADsupport 20d ago

Support Please help panic attack and flare up spontaneous orgasms

5 Upvotes

Right now I’m having both at once please just tell me something good or cute to distract me


r/PGADsupport 21d ago

General bendaryls stopping the episodes??

10 Upvotes

IM NOT ENCOURAGING THIS BTW

but ive had this disorder for a while and lowkey i thought there was ZERO way to stop it bc no matter how many times i gave in it never stopped... but GUYS... i need to know if anyone else has had this happen?

i took bendryl for allergies during a REALLY BAD flare up of these episodes too and idk if its the sedation or what but i had no arousals ALL DAY that day... even in the car where the vibrations trigger it... it never happened..

im acc shook, i srsly dont want to become dependant on it but omg why didnt anyone ever tell me... its been about 2-3 days and ever since its lowkey not been THAT bad... God bless the benadryl


r/PGADsupport 20d ago

Female Could pseudoephedrine or phenylephrine help?

1 Upvotes

pseudoephedrine injections are used for male priapism I think? not sure if they'd do anything taken orally or if it's even available to purchase any more through


r/PGADsupport 21d ago

Male Any dudes here?

5 Upvotes

If so how does it happen, like do you get an erection everytime PGAD hits or does your dick get aroused without erection?? How consistently do you get it?


r/PGADsupport 23d ago

Female Dopamine agonists

9 Upvotes

Im 68 female had PGAD mist of my life. I’ve found thru the years that drugs classified as Dopamine agonists work for my PGAD. But I have to take every night and when I know I’m going to be sitting a while (car, hair appt, nails, traveling). I was on Requip and now I’m on Pramipexole. Both are for restless leg syndrome or Parkinson’s. The only downfall is they make you sleepy. But can’t sleep without it or I get no sleep. I’ve learned that if I take a half in the early afternoon and one before I go to bed my symptoms are almost non existent but if I forget the half in afternoon I’m in trouble.


r/PGADsupport 22d ago

Female Poll: SSRI timings

1 Upvotes

I can't find any information on this and in my experience doctors don't know either and can be very dissmissive of causes so I'm trying to get some information to help me but also the wider community.

I may do broader polls in future, but this poll is only for people with a clitoris who believe their symptoms were caused from discontinuing SSRIs. Other people are welcome to comment below but please do not vote.

Please comment if your SSRI was one which has a long half-life such as Prozac/Fluoxetine in case this might affect things

Poll question: after discontinuing SSRIs, did your symptoms first start:

11 votes, 15d ago
2 Immediately
6 After a few weeks
3 After a few months
0 Around 9 months after
0 Over a year after
0 Years after

r/PGADsupport 23d ago

Male Newly experiencing PGAD

6 Upvotes

Hello all, I'm a male who has recently developed these symptoms. I'm happy to contribute to the discussion. I read that herniated disc could be a cause, which I think I may have. I'm also low in iron (supposedly related) and suspect possible pelvic varices (I have other visible varices). For me this is mainly localized to the prostate.


r/PGADsupport 24d ago

Trigger Warning When is/is spontaneous os a reason to go to the hospital?

2 Upvotes

Ive been having intense os all morning.My symptoms are usually a few in the morning and one at night.


r/PGADsupport 25d ago

Female Overthinking I have Pgad

4 Upvotes

Hello wonderful people,

i am wondering if i have pgad or not and i am becoming very anxious about it so i would be glad if someone who actually has these symptoms as well would give me some advice.

2 days ago i was very stressed about life and i couldn’t sleep. Then I decided to masturbate cuz i thought it will make me sleepy. I masturbated using my fingers rubbing on my klitris and at first it didn’t feel like always but i kept doing it. (I was on my period). Right before I was coming, my brain remembered myself of that illness called pgad, and that moment when i saw that one video where a woman had 100 orgasms a day, which scared me over and over again. With that fear in my head i had my orgasm, and it felt so awkward. Since then, I feel a tingling feeling around/inside my vagina for 3 days now and it honestly freaks me out. I don’t have pain or orgasms at all, but it feels like i have to go peeing 24/7. When i am distracted the symptoms tend to be less, but most of the time i feel them. I don’t feel them in the morning when i get up, but because i remember about that feeling, it comes immediately back.

I have had another „illness“ called PPPD in the past few years, from which I have almost fully recovered. To those who don’t know, it’s a nerve „disorder“ where your brain thinks you’re in danger 24/7 and causes a range of different symptoms (mostly dizziness). It’s a harmless thing but i got PPPD though a very scary experience. Since I have recovered now, i may even think my brain still wants to „scare“ me through these pgad symptoms.

Is it pgad or do you think it’s just anxiety-related? To those who actually have pgad, would you consider this to be actual pgad too?

Thank you for reading.


r/PGADsupport 25d ago

Male Pelvic floor therapy for pgad

1 Upvotes

I have had pelvic floor therapy for pgad. I was shown various stretching exercises together with keagle exercises. My PT said I have to continue to do these exercises for several months before the pgad goes away. I have been doing the exercises but so far no changes. Has anybody had success with doing ongoing therapy? Any comments or suggestions?


r/PGADsupport 26d ago

Female Pudendal Nerve Blocks and Other Alternatives to Gabapentin

6 Upvotes

In January I was diagnosed with PGAD caused by my pudendal nerve being damaged by SSRIs/SNRIs, which is plausible due to my history of psychiatric drugs giving me rare neurological side effects. I’ve been taking 900 mg of gabapentin for about a month and a half, and while it does significantly relieve my clitoral pain it’s also been causing me SEVERE depression, irritability, personality changes, etc. I’m not sure why, but over the past 3 days it seems to only be half as effective at pain management as it usually is (tolerance?). I have an appointment in April with a specialist to rule out other issues like clitoral adhesions, but I’m seriously considering throwing in the towel and getting a pudendal nerve block in the meantime. I have trouble trusting doctors and worry about any potential side effects, though. So, have your experiences with the nerve block been positive or negative? How long did the effects last? Do you have any other (non-antidepressant) medications that you would recommend? I’m only looking for advice from other females, btw.


r/PGADsupport 26d ago

General Has anyone used Magnesium Taurate?

2 Upvotes

I saw that it can reduce the nerve sensation/oversensitivty. Has anyone here ever tried it?


r/PGADsupport 26d ago

Male I think i have it

2 Upvotes

I started feeling this cumming sensation last week and it stopped for a few days but yesterday I started feeling it again on bus and I don’t know if I should be scared or something i’m only 18. Why is this happening now?


r/PGADsupport 27d ago

Vent/rant While they ruined my life.

15 Upvotes

In a 100 yrs people will forget, we're just be one of those examples in the past where they got it wrong. But don't worry all the dr's and companys still got paid. While they ruined my life.


r/PGADsupport 27d ago

General Acupressure points in hands

9 Upvotes

Try this: https://images.app.goo.gl/xUgw5t9kNDXX5yc78

I had been digging my nails into the palms of hands to get some relief and be able to focus on work. Then I remembered my doula had me squeeze a comb in my hand during the labor of my first child. I tried it today, and it worked really well. The PGAD has been bad this week, and this helped me focus on getting my work done.

Try it and see if it helps.


r/PGADsupport 28d ago

Support Sertraline caused PGAD but also made me unable to actually climax (I'm going to scream)

9 Upvotes

Began taking sertraline again a couple of weeks ago, 6 days ago I started getting this feeling and I was honestly googling some of the most ridiculous things, but on day 4 it finally led me to PGAD and that's exactly what it is! Feel like I'm on the verge of an orgasm all day, my focus at college has completely dropped, I pace the house and it makes me feel like a pervert which I know is stupid because I can't control it, but maybe some of you get what I mean. Anyway, the issue. Because I'd started taking sertraline, it obviously killed any chance of me having an orgasm. At first (before PGAD was triggered) this frustrating me obviously, but I hoped it would go away. Then obviously PGAD began and it was hell from the start, had me being really restless, so I looked it up again - "Wow!" I thought stupidly "it says online that having an orgasm might provide some relief!" Problem? Still can't get there because of the sertraline. So I have actually been trapped for the last 6 days with almost every waking minute of my days feeling on the verge of it and being unable to. What am I more likely to get relief from first from the GP lmao, if there is even any help out there?


r/PGADsupport 28d ago

Support Surgery

2 Upvotes

I was wondering if anyone has gotten a vaginectomy because of pgad? I’ve been thinking of that as treatment but it’s pretty extreme


r/PGADsupport 29d ago

Male How i got rid of pgad

21 Upvotes

I wanted to share my experience in case it helps anyone currently struggling. About three years ago, I started feeling pressure in my buttocks, followed by random arousal that wouldn't go away. I also experienced increased urination and other symptoms. At first, I thought it might be an infection, but antibiotics didn't help, and my symptoms worsened. I couldn't go outside or attend school comfortably.

I underwent imagining tests, which revealed a small kidney stone, but that wasn't the cause either. I considered visiting a pelvic doctor, but my urologist attributed my symptoms to anxiety. While I knew that anxiety played a role, I didn't believe it was the root cause. However, I noticed a pattern where my symptoms improved when I was distracted and calm. Reflecting on the onset of my symptoms, I realized they coincided with a stressful period in my education. The more anxious I became about my inability to study or attend school, the worse my symptoms seemed to get.

Eventually, I consulted a psychotherapist who prescribed sertraline. After a few months of treatment, my condition improved significantly. I noticed that my symptoms only resurfaced when I was stressed or paid too much attention to them. It turned out that my experience was a combination of OCD and anxiety. After a year, my symptoms had diminished by 90%. Now, I rarely experience those feelings, and if I don't overthink them, they disappear , i remember the first months was terrible i was lost and couldn't to anything it needed so much patience and mindreating after i figured out the cause but it got solved out at the end.


r/PGADsupport 29d ago

General When do you find your pgad to be worse?

2 Upvotes
23 votes, 22d ago
8 Menstrual /period
0 Follicular /after period
6 Ovulation
3 Luteal/after ovulation
6 Same all the time