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?
my first PT had only been doing this work for 3 years when I met with her, but apparently she was already "specialized" in hypermobility disorders, so I gave her a shot. she said various incorrect things about anatomy very early on and would complain to me about personal problems during our appointments. wasn't helpful although she was very sweet.
second one did the same two or three things during our appointments that never had any effect on my symptoms. it's like she had a cookie-cutter idea of how a PFPT appointment should go. she didn't provide me with things to do at home. whenever I asked about trying dry needling, she'd change the subject. she was also supposed to be "specialized" in hypermobility. also very sweet but not helpful.
my current one is doing dry needling, which I appreciate. however, she asks me the same questions about my medical history during every appointment (things she should have in her notes). today she found a (pretty deep) internal trigger point and said "that's your ischiocavernosus" (while pronouncing the name of the muscle wrong). the ischiocavernosus is a more superficial muscle, so I knew she was wrong. she then pointed to the bulbospongiosus (also pronounced wrong out loud) on her diagram and told me, confidently, that this muscle was the ischiocavernosus. they're completely different shapes.
this is a HIGHLY specialized field. they should know their shit. but they don't. and they charge 8 million dollars per unhelpful appointment.
I'm shaking and crying because I don't want to collect baseball cards of crappy PFPTs. I've spent so much goddamn money on this. I'm in pain every day. I don't know what to do. all the in-network PTs near me have extremely long waitlists, but I guess I've discovered why...
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。
My main issues are PGAD, pudendal neuralgia, hypertonic pelvic floor, and urethral pain.
Two weeks ago, my pelvic specialist did 100u botox in the levator ani and obturators, started me on cymbalta, I also began microdosing tirzepatide, using vaginal dilators 3x/week and TENS unit, and have been going to PT weekly now.
The PGAD has almost disappeared! Very tolerable now.
The urethral pain and bulbospongiosus muscle are still quite painful with hard knots. What is interesting is the urethral pain did not respond to the pudendal blocks, so I may have to get bladder instillations/botox/hydrodistension, but I really don't want to do this...
Any input is much appreciated!
一昨日からPGADの症状があるの。ネットで見るような車に乗ったら感じちゃうみたいな...そこまで酷くは無いんだ。なんか達する前？後？みたいな感覚が弱く続いてるの。でも何かほかのことをしていたら忘れられるくらいには軽いんだけど。でも困るのが寝る時で本当違和感というか不快感というか、残尿感にも似てるかな？そんな感覚がずっとあって最近は本当に寝不足。みんな症状があっても寝れるの？寝れない時はどうしてる？本当に軽いとは思うけどこれがずっと続くと思うと苦痛で仕方ない...
it comes for awhile then goes away then again comes/ goes away and now here I am in 2026: PGAD is back. I do think it is from tension and worry. First time 2010…out of the blue. I forget when the second time was and now it is August 2026 and I have been having that uncomfortable feeling of sexual arousal and there is no one around to have stimulated it. And no one around to help me get rid of it. So I came back here to share. I had thrown away my sex toys for fear my grown kids would find them when and if I die! (because my husband did die 7 months ago. ) But I just reordered some toys.
Hi everyone. I’m hoping to find someone who has experienced something similar and can share their experience with me.
For about four months now, I’ve been experiencing a constant, unwanted sensation of arousal in my clitoris, together with significant hypersensitivity and discomfort. I have absolutely no sexual desire associated with the sensation — in fact, it is very distressing and makes me anxious.
The symptoms are present throughout the day and seem to become worse when I sit for a long time. Interestingly, walking seems to relieve them slightly. On a couple of occasions, I also noticed a more noticeable pulsating sensation in the area during the night.
I was examined by a gynecologist,urologist, neurologist, psychiatrist (spent time,money and energy) and lastly by one uro gynecologist who specializes in pelvic health. During the pelvic examination, there was one particular area that caused significant discomfort, and I was told that I have some pelvic floor hypertonicity.
I was also given a 20-day treatment with ice and a corticosteroid ointment. I may have felt slightly better during that period, but overall the sensation has remained fairly constant.
I was also suggested to make some pelvic floor physiotherapy appointments.
I found this disorder by trying to find constantly information.
I am feeling quite scared and overwhelmed by all of this. I would really appreciate hearing from anyone who has experienced similar symptoms, especially if you also had symptoms that became worse with sitting or had pelvic floor hypertonicity.
Did anything help you? Did your symptoms improve over time?
Thank you so much. ❤️
I began having symptoms about two weeks ago, and they've gotten more and more frequent and severe. I feel it all of the time - at work, away from work, all times of day - along with anxiety symptoms like my stomach dropping/flipping, feeling hot, and feeling nauseous.
The problem is that my job is working with kids and their families. I feel very aware of how my body is feeling when interacting with them and it is scaring me. It feels unacceptable to have my body feeling this way in their presence. I am overanalyzing things, but like I said these body feelings are all day every day, not just in certain contexts or with certain people. It's constant.
But the past few days whenever I have to interact with a kid I feel like I'm going to have a panic attack. I feel completely crazy and am judging myself very hard for having my body feel this way. I'm scared I need to quit my job or do something more drastic. I'm feeling avoidant of work now and don't know what to do.
Hi everyone,
I (38F) am not entirely sure if I have PGAD, but I’d like to share my story and see if I can get some feedback. Before I kick off with my story, I want to describe my symptoms. First off, I never have had pain. The first time it happened in 2023, it was limited to clitoris arousal (absolutely no desire, nothing to turn me on, no physical stimulation). It went away after about a month jn 2023. Fast forward to 2025, it reared its ugly ahead again, and was limited to clitoris arousal. However, by the end of 2025, it turned into left side arousal that I could feel through my pelvis, hip, down my thigh, and in my knee. I will say that I do experience slight irritation in my thigh and knee. I also experience it in my anus sometimes. Masturbation does not relieve the flare up. My sex is not impacted in any way. Onto my story:
I experienced my first ever flare up in March of 2023. My ex had a mental breakdown, blew up at me, and kicked me out of the house. I was absolutely traumatized and horrified by the series of events. My body was obviously going through extreme stress. I wanted to run into a Mack truck on the interstate. HORRIBLE TIME IN MY LIFE. I wasn’t eating. This sensation was so weird and was making me feel worse. My stupid ass took him back after a month, and the sensation went away.
In 2024, I,once again, put my body through extreme stress by going through an intense graduate program. I was also put on lamictal for my PMDD (it’s an incredible drug that saved my life) and had a Mirena IUD put in (once again, incredible. Saved my life). I dropped 40 lbs, my hair was falling out, and I was supporting my bum of an ex, who was struggling with severe mental health he would not get help for. The thing is though, is that the flareups never occurred throughout the year of 2024.
Fast forward to March 2025: the best and worst year of my life. My ex slipped and fell in the bathroom, resulting in a TBI. Had I not gotten him to the ER when I did, he would have died. He turned into a total monster, and all I would do is cry. Once again, lost MORE weight to the point I looked skeletal and like I was dying. He wouldn’t let his parents help take care of him, so I was his sole caretaker. I started getting dark thoughts again. I finally couldn’t take it anymore and told him I had to leave. Once again, he kicked me out. I literally NEVER went back.
Anyway, I’m here today and beyond the fact that I’ve struggled immensely with task paralysis and executive dysfunction since I ended my long term relationship, I am doing incredible. I’ve been in intense therapy for 18 months now. Unfortunately, I have had rather consistent flareups since April of 2025. In September 2025, I started getting monthly acupuncture to further treat my PMDD, and I told her about my PGAD. She thinks my pudendal nerve has endometriosis. In December 2025, my arousal intensified DRASTICALLY, especially in my luteal phase. It almost got to the point where it was UNBEARABLE.
I talked to the therapist about it, and she taught me some techniques on how to distract myself. Eventually, the flareups have pretty much declined quite a bit and aren’t as intense as they were in December and January. My flareups go bonkers before I start my cycle, and the day that I do start my cycle, I do not have cramps. I experience an intense flareup, and the arousal sensation wraps around my hip to my back! Absolutely no pain beyond the nerve irritation I experience down my thigh and in my knee! Once my cycle is over, the flareup pretty much disappears. Sometimes it occasionally flares up when my colon is going through peristalsis.
Anyway, there you have it. It’s just so ODD that it’s limited to my left side, and I experience what I’d best describe as “arousal” on the left side of my pelvis to my hip, and also painless pressure on the left side of my pelvis as well. Feeling the sensation of “arousal” in my thigh and knee, coupled with what feels like a fried nerve blows my mind. I’m thankful that it pretty much goes away after my cycle ends, but what gives? Anybody else experiencing this? What are you guys doing to treat it?
*I’ve also started a regimen of Chinese herbs provided by my acupuncturist. I’ve also been prescribed Vyvanse to treat my task paralysis and executive dysfunction.
If you’ve gotten this far, Thankyou for reading :)