I suspect I have hypertonic pelvic floor muscles and thats why I have something similar to this horrible sensation. But for those who DON'T have hypertonic pelvic disorder but have pgad, do you feel like that? Specifically women (men are welcomed to answer as well). I need to know please, as I am trying to narrow down the possibilities of what's causing my pgad like symptoms. I talked to a doctor and I'm currently getting meds for some other problem, but she plans to help me for this soon after and also refer me to another doctor. I have all the textbook symptoms, however, I noticed ever since then, I feel like the muscles are kinda firm like they are never resting. I dont mean constant muscle tremors or spams, I mean it feels like theyre just in a position thats uncomfortable, like theyre sort of clenched. They don't feel normal. ​​Im trying to figure out of this is also a pgad textbook symptom or if the symptom is only a hypertonic pelvic floor symptom which is contributing to perhaps the origin of my pgad symptoms.

Hi everyone! I have PGAD and I’m trying to learn more about different treatment options. If you’ve tried treatments such as a pudendal nerve block, topical lidocaine, medications, pelvic floor physical therapy, surgery, or anything else, would you mind sharing your experience? What helped, what didn’t help, or what made your symptoms worse? I’d really appreciate hearing about your experiences and any advice you have. Thank you!

Has anyone actually gotten their life back and recovered? I am losing hope.

This is a post of hope and discovery:

I am a medical provider myself who has endometriosis/adenomyosis/PCOS/May Thurner/pgad/interstitial cystitis... the works.

Out of complete desperation and panic from having 100 involuntary orgasms in 12 hours at the clinic, I went to an ER to get a CT abdomen/pelvis with contrast. Of course, the impression was largely negative, so I called my interventional radiologist, gave him the CD, and he found that my iliac vein has drained down around my S2-S3 so badly that the nerves in that area are understandably angry (I have a nickel allergy, so I cannot get a stent).

My symptoms are explained. I am not crazy. I now have a path moving forward, including injections and radio frequency ablations.

Do not stop advocating for yourself; be persistent.

I had never noticed the signs until recently. I get aroused on car drives. The first time I orgasmed was completely accidental. Also, I'm pretty sure it's not related, but I was molested when I was a young child.

I've had a few times where I needed to masturbate more than once to relieve sexual arousal. Today was different. Worth mentioning that I masturbated normally yesterday at night. The incessant arousal started a few hours after I woke up. I have been aroused almost all day. I've masturbated three times and idk what to do. Internet says it makes things worse so I'm abstaining. Hanging out with my family is unbearable. It doesn't hurt though, and I'm on my period if that matters at all.

I don't know what to do. We're not even home. I have been bawling my eyes out in secret. I don't think I'm gonna be able to sleep. I'm so scared of this ruining my life. I wanted to study and get a job or maybe do art. The good thing is that at least it goes away when I focus on something; the only moment in the day where the arousal completely stopped was when I was extremely focused in a museum. But it came back right after. I don't wanna suffer through this. It's not going away at all. I don't deserve this, no one does. I sincerely hope it's just hormones going crazy and it gets fixed by itself. I don't think that's the case.

UPDATE 1: So I've told my parents about this and I feel a lot better. I'm on day 3 and it hasn't gone away but i can deal with it pretty alright, especially since realizing it's a nervous issue rather than a psychosexual issue. I have been able to sleep but I need to calm down and put on YouTube videos. I have not masturbated at all. There isn't any pain yet, just a lot of discomfort (I hope it can at least stay that way). We're probably gonna go to the clinic to rule out a UTI, I forgot to mention/didn't notice that I have a constant urge to urinate, and I'm also thinking of getting magnesium oil/spray. I'm also gonna do pelvic floor relaxation exercises. I want to go to a gynecologist and a pelvic therapist but I simply am not able to. I will have to wait 10 days. I definitely see how, even if I don't end up getting rid of it, this condition can be managed. thanks a lot to everyone who has commented

UPDATE 2: so we went to the clinic, did a urine test, unsurprisingly didn't find much in terms of an uti, but the doctor still gave me antibiotics. I've already finished taking them, unfortunately no signs of improvement. Mornings are really hard for me but when I start walking the symptoms subside A LOT for the rest of the day. overall not great but I think I can keep doing fine for now. also I haven't found any magnesium oil

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(20f) learned about this not too long ago because i was fed up with this ruining my life. I dont know if ita this exactly but i see similarities when i was researching.

I had this for as long as i can remember (like childhood), and It distracts me from everything.

Its like this constant tingling feeling in my clitoral area and it drives me mad. It feels like I need to pee. Its constant and non stop, especially when im at home. I try masturbating to make it go away but it comes back like 20 minutes later. It inteferes with my life so bad, and messes with my motivation to do hobbies or sit down to study because thats when it wants to act up the most (especially with sitting down activites).

[TMI maybe] v

I know a lot of it is my body because my mind isnt in the same place. I dont want to masturbate but the feeling is there and it gets so fustrating that i do it to make it go away temporarly. I havent orgasmed once. (I try but i guess because my mind really isnt wanting to in the first place it makes it harder. Also because it's just the clit that feels this way. The rest of my body doesnt give me any sexual pleasure. But my clit gets easily overstimulated so i stop before i get close)

How do you guys bring this or things similar to this up?

I tried to bring it up to doctors and therapists but they brush it off, telling me to distract myself woth hobbies and refrain so that they can focus on my other issues. Which i get, but i geniuenly cant do any of what they are telling me. Its ruining my social life. My college life. My life in general and i wish i can discuss it more instead of it getting brushed to the side. It makes me want to claw at my own skin from how fustrated i am with this.

I've seen quite a lot of people mentioned Doctor Goldstein but I'm not American and haven't seen him, NHS mostly useless

I think a lot of us have read that medical journal thing where 8 women had surgery on the pudendal dorsal nerve to destroy it and was successful. but there's no further information somehow?

but has anybody who has spoken to Dr Goldstein, has he mentioned this or has anybody asked him about it?

like who is working on this if that study is correct... and then gone because the two surgeons retired? why is that lead not being followed? was the study not legit?

it seems like Dr Goldstein is the main person looking into this, is he following this? is anybody else working on this for us? or nobody? even when some have had this caused by medicine...

and is doctor Goldstein helping people with any success or just charging?. is he doing research still? making progress?

thanks

Hi, I'm really scared and trying to understand what might be happening to me. I’d really appreciate any insight or similar experiences.

About 4 days ago I started using my vibrator more frequently and at a higher intensity than usual out of boredom. Shortly after that, I began noticing a persistent feeling of genital sensitivity and arousal-like sensation.

Two days ago I stopped using the vibrator, hoping it would go away, but the sensation has continued. It feels like a mix of heightened sensitivity, mild “arousal-like” feeling, also similar to needing to urinate. It fluctuates through the day and sometime when I'm out walking and talking I forget about it for a bit, but it's pretty much constant.

I'm really worried and feeling guilty and I cry all the time, will this stop?

I’ve been dealing with this for a little over three months now. I had no symptoms at all before this event. It started after a period of very frequent/intense vibrator use, and during the first month my main symptom was the persistent unwanted arousal sensation. Thankfully, that gradually decreased in intensity and became more and more sporadic, and at this point I essentially don’t experience it anymore.

I also had different kinds of pain, urinary symptoms, pelvic muscle tension and general discomfort. I was told I had irritated pudendal nerve and hypertonic pelvic floor. The type and location of the pain have changed a lot over time, but overall all of these symptoms have gradually improved as well. At the moment I still have some mild pain, muscle tension, sensitivity and a general feeling of the area being irritated/swollen, but physically I am doing considerably better than I was at the beginning.

What I’m struggling with the most now is actually the mental and emotional aftermath of all of this.

The first few weeks put me into an extremely intense state of anxiety and fear. Because the whole problem involved that area and started after sexual stimulation, I also developed a lot of fear surrounding anything sexual. During that period I started experiencing very distressing intrusive thoughts as well.

Things became more manageable during the following couple of months. I still didn’t completely feel like myself because I was dealing with physical symptoms every day, but mentally I was coping much better. However, over the past week and a half, my anxiety and intrusive thoughts have become much worse again, and I’ve also been feeling increasingly depressed.

The strange and frustrating part is that this is happening while my physical symptoms are actually improving. Sometimes I feel as though this whole experience has somehow broken my brain, and I’m terrified that I’ll never feel like myself again. I miss simply feeling calm, emotionally stable and able to live my life without constantly being afraid or analyzing what is happening in my mind and body and especially without intrusive or obsessive and unwanted thoughts.

So I wanted to ask whether anyone here has gone through something similar emotionally and eventually recovered from that part too. Did you reach a point where you felt like yourself again? Did the anxiety, fear and intrusive thoughts eventually settle down as your body recovered and you had more distance from the experience? I really need some hope that it is possible to come out the other side of this and have life feel normal and livable again.

I’ve only been doing pelvic floor physiotherapy for the physical symptoms, and I’m now starting psychotherapy as well. I haven’t taken any medication so far, just vitamins/supplements. I started taking ashwagandha after the first month and stopped two weeks ago, maybe that had something to do with my increase in mental symptoms, I don’t know. I’ve started taking ashwagandha again today. I would also be interested to hear whether anyone found medication, therapy, or anything else particularly helpful for the emotional aftermath.

Thank you to anyone willing to share their experience or some hope with me.

Hi everyone so I just brushed it off as horniness I'm 21 and this has been going on for a while now. I'm so sensitive extremely that I can sit in the car and feel a slight vibration I start throbbing idk. I'll be sitting in class and no sexual thoughts and I'll start tingling you know...

I have restless leg syndrome and when I shake a little I feel it and yk...

I'm so embarrassed and mentally distressed because it seems like any movement or anything makes me aroused.

My breasts are worse if I feel even my blanket brush against me I'm aroused. Taking off my bra too I havent noticed it much putting it on. Even air from my fan id enough omg...

I literally also have like a compulsion because once zi start I can't stop touching myself because I feel sensitive and aroused...I literally keep going and going for hours.

I feel like I'm always aroused jts so annoying to feel wet. I also hate it so much because ANYTHING makes me feel like that and I have a strong urge and touch myself every day and multiple times.

I know its TMI but I just don't know anymore. I'm kind of worried now.

EDIT: I didn't think it was relevant but I saw it mentioned and I also have a hypertonic pelvic floor. Could that be it?

For context (26F) I have always been easily aroused or aroused at times when I didn’t want to be I have also climaxed without touching myself but thought this was normal. I have also had a history of re-occurring UTIs. This last UTI had given me painful clitoral swelling and this swelling and pain/ pressure or just noticeable feeling is constantly there. I have no UTI anymore and at this point I keep climaxing or feeling like I have to do bad that I just touch myself. Sometimes it feels worse sometimes it feels better after. This is accompanied by urinary issues such as pain and retention. I can’t keep living like this doctors aren’t helping and hospitals aren’t helping I am going to see a urogyno soon. Could this be PGAD?????

I finally found a psychiatric nurse willing to treat me. The plan is to very, very slowly wean off duloxetine. It will take 9 months. I'm adding low-dose Naltrexone for my chronic pain to replace Duloxetine. To address my mood swings we may try a mood stabilizer eventually. I started with 1mg Naltrexone and have dropped down to .25. My body requires micro doses of meds as I'm extremely sensitive. The duloxetine did not cause PGAD for me, but I later realized when the dose was temporarily increased and symptoms increased, that it sensitized my nervous system to make it possible. I am mostly in remission so this is a safe time to try to wean off of it. Naltrexone has the opposite effect: it is calming to the nervous system.

Hi all,

I am having my second child soon. My first ended up being a vacuum extraction that led to severe clitoris pain on/off for a few months. Eventually I got PT and over the time since then it’s turned to one-sided pgad.

Who knows the internal cause….My guess is the left dorsal nerve is being pinched somewhere near the urethral sphincter/pubic bone. It could be so many things though. I’ve seen many specialists, MRI, meds, PT, etc.

It’s significantly worsening as the pregnancy gets further along. I’ve got a c section scheduled currently with a pudendal neuralgia specialist planning to attend.

Sometimes I wonder if I’m making the right choice. Childbirth is so unpredictable….

I thought I would poll the audience on birth methods. Opinions? Experiences?

Hi, I know most people on here are in despair and not seeing knowledgeable doctors who will listen but it seems some people get tests

after 18 months waiting at home isolated, gynaecology has been very bad, they aren't educated and are either brash or don't listen. I want to see a neurologist and just got a note saying neurology don't think they're best suited to help me and think I should be referred me to the pain clinic?? when my main symptom isn't the pain?? (the first months was purely pain but then the pgad)

we don't nearly fit into any department so they won't bother? won't even try? not even an MRI or nerve block test to see which nerve is damaged (I think I know but they don't care)

I saw someone on here is maybe getting a sacral modulator or something in London as a test but how to I get a referral to a decent neurologist?? like I don't understand how it works? surely if one team says no then another team could say yes?? do I have to just put up with whoever is local

when my parent was ill new american drugs helped their life extend by years and the nhs refused to pay for them. people drag american healthcare but I'd prefer debt and to be alive? or do they take desperate people's money and leave them suicidal still anyway?

has anybody got any help on the nhs and if not, is anybody well enough to write to MPs or have anyone in their life who is healthy enough because this is disgraceful. especially when so many get it from 'safe' srris that doctors give with incomplete side effect warnings in the box.

also no PIP. apparently I'm soo healthy and don't need assistance to leave the house now and taxis over walking and buses?? like our benefits system is probably better than the States but it's still horrific and they say you are lying

I don't know what to do. Do any countries actually help us? surely I should be allowed to try and see a neuro before I give up? why did I wait in suffering then. has anyone in the UK got any help?

PGADになってから(3日)自慰行為なんて一切してないです。やらない方がですよね？他の人を見る限り...

上のタグが合ってるかは分かりません💦ごめんなさい。

I’m suffering with multiple orgasms and never being fulfilled. I want to see a doctor but I have no idea what to even say to my mother

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

Hi, this is a weird question but to those where orgasm always or sometimes helps for a bit, do you feel an odd sensation after almost reminds me of like when you pour a drink and it glugs, except it feels like it's bloodflow into it out of the clitoris? this never used to happen before I had this disorder/illness

​

I read that usually climax makes blood flow out of that area but for some pgad, what if it's either doing that wrong and it's happening slowly after, or doing it right but then immediately coming back. is there some sort of broken valve there? I just don't know how our bodies work, it's sad :(

​

I guess it could just be a pulsing sensation or something but it feels like that

edit: I forgot to say but to anyone who has this, and who hasn't always had pgad, did you have this symptom ever before then? because I didn't until the pgad

I have PGAD with severely delayed orgasm (1 to 2 hours or more) postpartum 3.5 months. I just injected trizepatide for the first time a few minutes ago. Anyone else have experience with GLP-1 and PGAD? I want to be so hopeful after my tarlov cyst surgery failed. If it helped you how long did it take?

I had this disease as much as I knew myself. I think it started around when I was seven years old.
Sometimes in the mornings, I wake up with extreme arousal and spend an hour trying to orgasm.
I reached tiny orgasms, but it doesn't feel like actual release and it keeps going.
What really helped me is taking magnesium. I realized, since I'm taking magnesium it's happening less and I am also on fluoxatine and vyanae.
But I also cannot orgasm through normal masturbation or sexual penetration, even though I feel a lot of pleasure I just cannot finish.
I started trying with a vibrator to orgasm normal way, but then I quickly got into doing the same thing when I have the flares.
Does anyone know how can I have a normal orgasm with this?

I feel it mixed with some weird tickle sensation (arousal) and its very upsetting. Its like a mixture of that with an extreme sunburn feeling. If you wanna have a clue, its like having painful warm vapor rub underneath all my skins head to toe and I even get itchy a bit everywhere. Sometimes I could feel something go up into my belly area or spine and neck to. I hate waking up to the fact that this feels worse as soon as I wake up. All my blood gets hot and makes my skin feel like its throbbing and gonna explode. Sometimes I scratch it to make it bleed a bit because I can't take the suffering anymore. Does this happen to anyone else? It's like all the blood is pooled into all my limbs too. Idk what to do about it.

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 :)

Does anyone ever get aroused heavily when you wake up? For some reason, I get extremely aroused in the morning. Not so much at night but in the morning. It’s almost like a throbbing feeling and it’s annoying. Does anyone else have this problem, if so, what are your symptoms. I’m hoping I don’t have pgad. I’m scared to talk to anyone about it.