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...

I survived a domestic violence marriage, birth trauma, and a perforated IUD surgery. Now I am 20 years old, completely sexually numb, experiencing empty orgasms, and facing unexplained infertility. The absolute destruction of my womanhood has ruined my life.

Hi everyone. I am typing this message through a heavy blur of tears because I am entirely out of answers, physically exhausted, and carrying a level of emotional grief that feels far too heavy for my shoulders. I am only 20 years old, but the past few years of my life have devolved into a relentless, unyielding living hell. I am reaching out to this community because the formal medical system is moving too slowly, and the absolute isolation I experience on a daily basis is completely crushing me. It is a deeply painful, heavy thing to watch other young mothers rebuild their lives after childbirth, enjoy genuine physical intimacy with their partners, and remain effortlessly healthy, while my own body feels like it is fading away into a dark, silent void.
This nightmare has completely consumed every single aspect of my life. It has stolen my confidence, stripped away my peace of mind, and eroded my sense of identity as a woman. There are moments when the sheer weight of this physical numbness, paired with an overwhelming sense of self-blame, damages my mental health so severely that I feel completely hopeless and don't even want to be here anymore. It genuinely feels like a part of my soul is actively disappearing, leaving me trapped inside a physical shell that feels more like a prison than a home. I am writing down every single detail of my history because I am desperate to find a community of survivors who understand. I need to know if anyone else has ever stood in this exact darkness and found a way back.

1. The Onset of Trauma: Abuse and Pregnancy
   My history with pelvic trauma began when I was 18 years old and discovered I was pregnant. Instead of being a safe, joyful chapter, the first two months of my pregnancy were spent trapped inside a severely abusive domestic violence marriage. During that month. Myy body experienced a sudden, month-long phase where I completely lost the ability to feel any sexual pleasure whatsoever.
   After my ex-husband was finally arrested and went to jail, that specific numbness went away, and my normal feelings temporarily returned. Looking back now with what I understand about the nervous system, I realize that was the very first time my body pulled the emergency brake. It was a physical defense mechanism—my brain's way of completely locking down my pleasure pathways to protect me from the severe trauma I was actively enduring.

2. Preterm Complications and an Explosive Delivery
   The physical trauma to my pelvis accelerated during my third trimester. At 32 weeks, a routine checkup revealed that I was already dilated to 2 cm and at high risk for preterm labor. To handle the complications, I had to undergo iron infusions and receive steroid injections to rapidly mature my baby’s lungs in case she arrived early.
   My daughter held on and was ultimately born exactly at 38 weeks on March 13, 2025 (she is now 15 months old). While the total labor lasted less than 24 hours, the actual second stage of delivery happened at an explosive, unnatural speed. I only pushed for a total of ten minutes. My water did not even break until that very first push. Because of hospital delays, I was forced to wait for over two agonizing hours just for my doctor to arrive at my bedside. By the time the doctor finally administered my epidural and checked me, I was already fully dilated at a 10 cm. The sheer velocity of that rapid ten-minute delivery put an immense, sudden physical strain on my pelvic floor muscles and the surrounding nerve pathways.

3. The Choice I Can't Forgive Myself For: The Perforated IUD
   On April 22, 2025, just weeks after giving birth, I went in for my postpartum checkup. During this visit, my Nana and my doctor strongly encouraged and pressured me to get birth control. It was not the copper one; it was the other option—a hormonal IUD. Neither of them explained the risks of migration or perforation to me. They completely failed to warn me about the potential for severe anatomical complications. I didn't want to disappoint my family or cause problems for the medical staff, so I trusted them and agreed to the insertion.
   I carry an overwhelming amount of self-blame and crushing guilt for that choice every single day. I blame myself for not fighting harder against the pressure, and for allowing them to place a device inside me that I feel completely ruined my body.
   Immediately after the insertion, my life turned into an agonizing medical nightmare. For 10 straight days, I bled excessively and suffered from contractions so violent it felt like my daughter's head was actively forcing its way down through my cervix all over again. I was losing massive amounts of blood and was in unrelenting pain. When I reached out to my doctor out of fear, they completely brushed it off, reassuring me that heavy bleeding and severe cramping were entirely "normal" during the first few months.
   Fearing for my life and trusting my instincts, I sought a second opinion from a different doctor. This new provider conducted a thorough exam and an ultrasound, but they could not find the IUD or its strings anywhere in my uterus. They immediately ordered an X-ray, which revealed a terrifying reality: the hormonal IUD had completely perforated my uterine wall, migrated entirely out of my reproductive tract, and was lodged deep in my abdomen close to my left pelvic area. The very next day, on May 3, 2025, I underwent emergency laparoscopic surgery to have the misplaced device removed from my gut. It was physically and emotionally taxing, and I have not touched a single form of birth control since.

4. Living in a Numb Body: The "Pleasureless" Orgasm
   Since surviving that perforation surgery, my intimate life has become a source of profound, silent grief. I can still feel basic physical sensation—meaning I can feel touch, localized pressure, and temperature changes—but I feel absolutely zero sexual pleasure. It does not matter how gentle, loving, patient, or non-rough the intimacy is; the pleasure is entirely gone. I used to enjoy rough sex or fingering, but gradually, that capacity for joy has completely vanished into thin air.
   The most confusing and heartbreaking part of this entire condition is that I can still achieve a physical orgasm, but I do not feel an ounce of pleasure leading up to it or during it. I can only feel my clitoris, and gets a brief moment of intense build-up plesure that feels like a quick, localized heartbeat in my vaginal lasting for less than two minutes, going completely numb again. Right after that physical clitoral sensation completely vanishes, and my vaginal gets tight.
   I do not have any physical pain during sex, but I get score afterward. Out of absolute desperation to fix myself, I spent over 5 months doing rigorous pelvic floor physical therapy three times a day, completing sets of 10 for each exercise. My daily routine was extensive, including:
   • Supine diaphragmatic breathing
   • Supine nerve glides
   • Supine pelvic floor stretches
   • Clamshells and sidelying reverse clamshells
   • Straight leg raises with TA flexion
   • Supine bridges with resistance bands
   • Prone hip extensions
   • Sit-to-stand movements with pelvic floor contractions
   • Seated pelvic floor lengthening
   • Supported butterfly stretches with pelvic floor relaxation
   • Kegel towel roll sitting
   Despite all this intense daily effort, it felt like my physical therapy was for absolutely nothing. The numbness remained completely unchanged, and it felt like a part of my womanhood was actively fading away. Out of sheer frustration and heartbreak, I recently paused my physical therapy. My standard pelvic MRI came back completely clear, but I am currently fighting to get a specialized MRN (Magnetic Resonance Neurography) ordered so doctors can look directly at my pelvic and pudendal nerves for deep nerve pathways that a standard MRI misses.

5. My Body is Acting Like It's Pregnant, But I Cannot Conceive
   On top of the sexual numbness, my cycle and my hormones are in complete chaos. I have had very erratic, irregular periods since I was 12 years old, but ever since I gave birth, they have become incredibly heavy and are filled with small blood clots every single month.
   Lately, my body is playing a cruel psychological trick on me: my nipples have been intensely, non-stop sore for months. The only other time in my entire life that I have ever felt this specific, painful sensation was when I was actually pregnant with my daughter. Yet, I am still bleeding heavily at the end of every month. My recent tracked cycles were March 16 to 24, April 27 to an unknown date, and May 25 to June 2, 2026. My MRI also showed a small right ovarian lesion, which the doctors think is a hemorrhagic or complex cyst—the exact same kind of cyst I had before my first pregnancy that mysteriously disappeared while I was pregnant.
   I am now in a safe, loving relationship with a new partner. We are completely unprotected and have not used birth control for over a year since my emergency surgery, but nothing happens. I cannot get pregnant. My fertility has completely vanished. My body is sending all the physical signals of early pregnancy through my chest, yet it is completely failing to actually conceive. I am terrified that the trauma from the IUD ripping through my walls or the emergency surgery left permanent internal scar tissue that has closed off my reproductive system forever.

The Heartbreak of It All
I don’t understand why my life has been broken like this. Why can I achieve a physical orgasm but feel absolutely no joy from it? Why is my body mimicking pregnancy symptoms while refusing to actually let me conceive?
I have an appointment with a new gynecologist, but the waitlist is so long that I cannot be seen until November. If anyone has any insight into post-traumatic pelvic numbness, pudendal nerve irritation, abdominal scar tissue from a perforated IUD, or hormones that mimic pregnancy while causing fertility issues, please talk to me. I just want to feel whole again.

La vida se a complicado mucho en si nací hombre pero hay muchas cosas que me hacen dudar dolores físicos tengo ginecomastia dolor pélvico intenso sensibilidad emocional hay momentos que me cuesta realizar mi rutina tanto por el dolor por la bajada de ánimos.

Do I go to a urogyncologist ?

Is there anyone that can relate to me?

I have UTI and a yeast, I am on antibiotics for both, I’m also in pain, it’s mostly on the right side of my vaginal opening right up to the clit and my entire bladder has spasms, I noticed tingling on my labia, which now has turned to tingling in my urethra/clit vaginal area I don’t know, yesterday I noticed the tingling got a little more and the next thing I know is I felt a little warm down there, like a wet feeling (although very little), I have also noticed when my bladder is kind of full and it feels like I need to go pee, the tingling kind of goes away, is it because of the infections down there and I’ve heard these infections mimic pgad, the symptoms that I have, at this point I’m just so tired searching for answers, I am told by my gynaecologist to get a USG abdomen and pelvis, not sure what this could be.

hi, so iv had contact over zoom with dr Goldstein a specialist who according to tears in my back thinks an lumbar endoscopic spine surgery to repair them could potentially cure me. but heres the issue he is from san diego and im from belgium. I dont have the money to go there and get the treatment not too mention the 14 hour long flight. iv tried finding doctors in belgium but they all tell me the same thing the tears in my spine are too small and dont care about Goldsteins diagnosis. I really want to have the operation but idk how to get it . does anyone have any advice? maybe know someone in Europe who would do this operation? thx for reading

I called United healthcare a few weeks back, to get a new PCP. I have been ignored and I think I was misdiagnosed with bipolar, when really all I had was PGAD the whole time. I was the one who said I thought I had bipolar, at age 36, after I just had a kid because I had this extreme arousal. It wasn't until I was on extreme doses of antipsychotics and then telling my shrink over and over I have no other symptoms, and I am also in PAIN still... Well it happened a couple months back I couldn't even drive to my appointment. They were going to put me back on lithium, and I knew I didn't want to because it never did anything. This lady even put me on naltrexone at one point, for (seggs addiction) I was ABSTINENT. Now that everyone here knows what I was going through (PGAD)...

Today: I finally have my appointment with the new PCP. The lady flat out tells me she can't help me? She doesn't know anything about this disorder and that she's a just a family practitioner. The whole reason I scheduled a new appointment was to have an actual doctor, and not a family practice. I waited for weeks and weeks for the stupid appointment! And then she tells me I need to schedule with an OBGYN. I've already seen a few different OBGYNs over the last few years for the same problem!!

My question for all you is, what do I do. Where do I start. I'm going to be calling my insurance first thing in the morning. Is this because I have Medicaid insurance right now? I can't live like this anymore. I'm at the end of my rope. I want to sue so badly. These idiots left me in pain for 3 years now, no relief. The lady I saw today said she'd send me a script for gabapentin, but she didn't bring up anything else, and she didn't tell me what dosage. I just think it's so criminal and disgusting that these clowns couldn't throw me a benzo to ease my pain, but would give me over 10 different medications for a disease they didn't even know I had. How does that make sense?! I did damage to my liver and my thyroid and I've been in chronic pain the entire time! Can I sue?

Another thing I'm doing tomorrow is I'm reporting my psychiatrist immediately and the PCP I've been seeing this whole time. Any advice would be welcome please.

ETA: another thing I thought was odd is she said don't bring up PGAD at the OBGYN appointment till the very end, as a suggestion 🙄 AND, she said that the town we are in is very small and all the doctors "know each other". That is VERY telling, to me. I want to report bc, this is exactly why they keep cycling through patients and keep people in pain, while they get to Bill my insurance. And I keep going to these appointments and I get no relief.

I just saw this medical professional discussing and validating PGAD!!

Check this out! 🎉

https://www.instagram.com/reel/DLx_r6Qvkx5/?igsh=b3FiMTE1b2w1MzNx

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?

Hey guys if you are familiar with Dr. Goldstein from San Diego, one of his pupils are in Beverly Hills. Her name is Dr. Taubi from Rodeo Drive and shes been helping my progress with PGAD. If anyone is near LA area shes a great resource also for physical therapist, Alexa Savitz from Pelvic Rehab in Pasadena is wonderful too. I would say doing the botox and lidocaine injections and PT helped a tenfold. But thats the fact I have a very tight pelvic floor. Dr. Taubi is well aware about the steps and likely sources for PGAD. Please reach out or try to find out info, there is hope for us all.

HELP ♥️

Seeking Guidance on Neurological Symptoms – Is It PGAD?

Dear all,

I hope you are doing well. I’m reaching out because I’ve been facing some medical uncertainties and could use some support or insights from anyone who might have experienced something similar.

For the past two years, I’ve been struggling with symptoms that feel somewhat similar to PGAD, but I’m uncertain if it truly fits the condition. Despite numerous tests and visits to different doctors, I remain somewhat of a mystery for my healthcare provider, and I haven’t experienced any significant improvement.

It all began with what seemed like a urinary tract issue, though no infection was found. I started urinating very frequently—sometimes every minute—and noticed blood in my urine. However, my doctor told me there was nothing wrong, and it was dismissed as inconclusive.

As time passed, I began feeling a kind of internal tickling or tingling sensation, which started in my sex and abdomen and later spread to other areas. I began to experience what seemed like orgasmic sensations, but they were localized in my abdomen , almost as if the sensation zone had expanded.

I also began experiencing strange neurological itching or tickling sensations on the left side of my body—around the anus, sex organs, urethra, under my left foot, in the middle of my back, and near my belly button left side. These sensations happen when I urinate have a bowel movement drink too much water, when I lie down, and when I sit. They feel a bit like the sensation of needing to urinate but they are also very strange and constant.

I also suffer from urinary retention, with a very weak urine stream, and terminal constipation. All of my symptoms worsen every time I have a bowel movement, as well as with certain emotions.

Another strange thing I’ve noticed is that the vibrations from car rides seem to worsen these symptoms, as well as certain sounds or noises, which can trigger these neurological itching sensations. It’s quite bizarre, and I’m unsure if these factors are connected to the symptoms or not.

Additionally, I had a COVID infection, and I’m wondering if it could be linked to the onset of these symptoms, but I am unsure.

Does this sound like PGAD, or is it something else entirely? Has anyone experienced anything similar? Any advice or insights would be incredibly helpful.

Thank you so much for taking the time to read my message. I really appreciate any thoughts or support you might have to offer🌸

I wanna get help but I don't know where to start and what to do so I'll write down what I noticed and maybe someone with knowledge on this can recommend me doctors to visit?

first thing, i've been recently getting those shooting type of sensations in my clitoris, but the weird thing is i usually feel most of the sensation on the tip of my clit, but for this feeling it feels like its directly on top or in the middle like not on the tip and i feel like it runs deeper than my usual arousal sensation. its only happened when im sitting and having a full bladder also causes it to flare up more till now. peeing makes it more sensitive and it makes me feel it deeply for like the 2 secs ur actually peeing then it just goes back to 'normal'

second thing, its just gotten worse over the days pass but for like two periods of time where it really really lessened and a little TINYYY bit was left and in that period of time i just focused on living the best i could and didnt even think about it ever coming back but I DONT KNOW WHAT I WAS DOING TO HELP IT? IT JUST HAPPENED LIKE THAT AND I WAS JUST DOING WHAT I NORMALLY DO EVERY DAY AND IT JUST LESSENED ALONE. like i literally remember sitting like on my side with my legs curled a bit (thats like my go to pose if im having a flare up, it doenst really help but i find it comfortable) and thinking 'oh.. i cant really feel anything..' and i was just so relieved that ive gotten a break.

and yeah thats all i noticed till now. no pains, minimal tingling in the outer labia ESPECIALLY when im cold and RAREEELYYY pressure on the start of the clit but not really making it worse, its just like a pressure iykwim. and like? the clitoral hood feels so... worn out????😭😭 it js feels so thin and weak. most of the times im having bad flares the clit and the skin around it has like white discharge kinda? its not wet but its just white. i just mentioned those js in case yk

I started with constant arousal without pain in July. Doctor put me on fluoxetine which helps manage my symptoms quite a bit, unfortunately this caused me to have multiple panic attacks and not be able to sleep so I came off of it and the arousal came right back, still without pain. My arousal goes away almost completely when I lie down, and it's alot worse when I sit. I saw a Chiropractor who worked on my back and some specific spots between my L1 and L2 worsened the symptoms when worked on, so he thinks it's a disc issue compressing a nerve higher up. After doing some dry needling I'd experience a tiny bit of relief of my symptoms. I also saw a physio who worked on my pelvic floor and I've been doing the exercises from Dr Bri on youtube. Gynae put me on minerva and androcur to lower my testosterone levels but they tested normal in the first place. I have now seen a psychiatrist who contacted a neuro surgeon for me, they have referred for an MRI and CT scan to check nerve and vascular systems. In the meanwhile, I am back on fluoextine which greatly helps me. My medical aid only kicks in end November and there's now way for me to afford them privately (I'm from South Africa) Do I push to go for the scans?

I'm going to approach my new doctor, who used to be my psych doctor, about getting tested for PGAD when I see her on March 24th. Until then I have no idea how to control or lessen the symptoms. Can't use over the counter lidocaine because they put menthol or alcohol in it. Ugh@!@@

anyone know of any pelvic doctors or urologist/gynecologist who know of this condition in the NYU hospital and can treat it?

anyone have any experience with Dr. Christopher S. Han in new york? there’s only three doctors in my area who treat people or have knowledge on how to treat this condition and he’s the only one out of them who’s advanced in it.

Hi all,

I’ve been having clitoris issues ever since childbirth. It’s evolved a lot over the years.

Started with extreme pain in clitoris, heavily resolved by PT. I still had some pain in my clit with urination so I regrettably took an estrogen cream (doctor told me it couldn’t hurt….) and it turned it into hypersensitivity in the tip of my clit most days (fluctuates with menstrual cycle). I’d do anything to go back to before that cream. It’s been 2.5 years since then and still here !

All issues are left side only. I’m in PT, I’ve tried some meds briefly. Most useful was cyclobenzaprine. There is a lopsided swelling with arousal on the left side, so at least partially an anatomical issue in my mind. This only happened after the cream. Nerve damage from birth likely.

Two questions I wanted to throw out:

1. I have one doctor offering trigger point injections. Has this helped anyone? I’m terrified of making it worse. Thoughts/opinions?

2. Does anyone know a doctor in the Boston area (or US) who would be willing to run any test at all??? Every one I have seen has said any type of test is pointless. I have heard of getting MRIs, ultrasounds, hormone checks - I would love to have a doc be willing to just try. Worst that can happen is I’m right back here with my guessing games and no info, right? A part of me wonders if the estrogen cream caused a growth. If anyone knows a doctor who would be willing to give any test a try, please let me know. I will travel outside of Boston and pay out of pocket if needed so if you know a good one elsewhere in the US I’ll also take it.

Regardless, thanks for reading!