u/doinmydarndest

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...

genuine question: has anyone made SIGNIFICANT progress and/or completely resolved their pelvic floor issues via PT alone? no meds/injections at all? I see a tiny bit of progress in PT that just regresses completely while I'm asleep. I wake up with solid, unmovable (immovable?) muscles. I've tried almost everything. doing Botox injections in September, and hopefully that'll get me somewhere.

I just feel like it's crazy to expect PT to help by itself. I've even slept with dilators in, and that doesn't prevent the clenching. I understand this is probably a nervous system issue, but I really can't control what my body does when I'm unconscious.

thanks for entertaining my discussion.

genuine question. I've been dealing with pelvic (pudendal) neuralgia for over a year. doesn't seem to be getting any better any time soon despite doing all the things (PT, nerve blocks, nerve pain meds, therapy, etc. etc.). it affects sitting, walking, urinating, defecating (and obviously sex but that's not even on the table for me these days). I'm in pain from the minute I wake up to the minute I fall asleep. the pain has made me extremely stressed and anxious. I'm continuing to pursue treatment.

I'm scared I'll never be able to work a "normal" job again. what do y'all do for work?

so I've been dealing with pelvic floor issues, episodes of PGAD, pudendal neuralgia, etc. for about a year, and I'm trying to figure out if PSSD is in my suitcase full of problems. pain started 2 weeks after tapering off Zoloft in May 2025 and were mostly urinary at the time, but since then I realized I have weird clitoral sensations 24/7. and urethra pain.

basically, symptoms change a lot for me! but I have bouts of genital numbness here and there. I have no libido at all. I cannot get aroused. if I do manage to have an orgasm, the area is extremely numb and painful afterwards. like hot sauce but cold? like that cool numbing spray they use for in-office dermatological procedures.

is this a PSSD thing? numbness/pain after orgasm?

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.

bro. is anyone managing without meds? if so, I'm impressed. and would like to learn from you. I'm in PT (for over a year), and I just started dry needling. I was taking pregabalin for a while, but I had various side effects that made me quit. one of them was increased PGAD symptoms, but I was also on Zoloft at the time, so I'm not sure which one caused the PGAD.

I'm off Zoloft now, so I'm willing to try pregabalin again. or maybe amitriptyline. but I'm kinda terrified of the increased dementia risk. mayhaps I'm just doomed.

I'm just looking to hear from others. not sure if anyone has "cured" the burning via PT alone.

I'm very much shawty fire burnin on the dance floor right now. thanks y'all!

bro. is anyone managing the pudendal neuralgia burning without meds? if so, I'm impressed. and would like to learn from you. I'm in PT (for over a year), and I just started dry needling. I was taking pregabalin for a while, but I had various side effects that made me quit. one of them was increased PGAD symptoms, but I was also on Zoloft at the time, so I'm not sure which one caused the PGAD.

I'm off Zoloft now, so I'm willing to try pregabalin again. or maybe amitriptyline. but I'm kinda terrified of the increased dementia risk. mayhaps I'm just doomed.

if this is the wrong community in which to post this, lemme know! I'm just looking to hear from others. not sure if anyone has "cured" the burning via PT alone.

I'm very much shawty fire burnin on the dance floor right now. thanks y'all!

hi! don't know where to start. here's my history:

painful, awful periods (heavy, 9-10 days long) as a young teen prompted the pediatrician to put me on oral combo birth control at 16 years old. that was fine for controlling periods into my early 20s.

at 21 I switched to the Nuvaring. was great! but I had more yeast infections than I ever did before. a little over a year ago (May 2025), I had a yeast infection that I think screwed me up forever. treated it, but weird symptoms (burning, urethra pain) remained. I decided to try NO birth control for the first time to see if my body would "reset." it did not!

I did that experiment for about 3 months, and the burning was hellllllllllll. I was swabbed for every issue under the sun. no more yeast, no infection of any kind, no STI. I even had my hormone levels tested (blood test). everything looked normal on paper. no weird smells coming from down yonder. everything appeared normal when I looked with a mirror. I was still having periods and ovulating. I was sent to pelvic floor physical therapy and have been doing that since.

I've trialled various different oral birth controls since September. nothing has gotten me back to normal. I've tried nerve pain meds (gabapentin, pregabalin, duloxetine) that haven't helped at all. I've even had two pudendal nerve blocks that did nothing.

ultrasound revealed adenomyosis. Mirena IUD placed a few weeks ago on June 22. a big theory, since all these doctors think this is nerve pain, is that my adenomyotic uterus could be causing muscle/nerve dysfunction.

however, no one's been able to tell me why my discharge is simply gone. vanished. when I walk around, my vagina often feels like sandpaper. and I'm like... hello? I'm not perimenopausal? did the yeast infections really screw up my vaginal tissue for the foreseeable future?

I've asked my doctors about autoimmune/skin issues since my mother has lichen sclerosus. it doesn't appear to be anything like that.

I miss my discharge so much. never thought I'd say that. but it's so weird and jarring to be dealing with vaginal dryness at this age.

I tried vaginal estrogen in October. I did the normal 2-week loading dose, which took away the burning and pain, but it didn't make me feel "normal" again. and once I switched to twice-a-week dosing, all symptoms returned. I'm going to give it a try again now. I'm just scared that my vagina has betrayed me and will never return to normal. lots of doctors have been very confused by my case. I'm also confused.

if anyone else is in their 20s going through this, I send my love and support! it feels very isolating, but you're not alone.

and if anyone wants to offer up any ideas or advice or words of encouragement, that'd be lovely! ♡♡♡

hey y'all! someone recently posted about lidocaine and then deleted it, but I promised under that post that I'd update about a compounded triple numbing cream I was about to try. it's benzocaine 20%/lidocaine 6%/tetracaine 4% compounded into a "versapro" cream base (no idea what that means. just reading the lable).

unlike over-the-counter lidocaine, it doesn't burn upon application at all! it's very gentle. it has worked to numb my clitoris 🥳 and it doesn't feel too weird. I will absolutely be using it before I need to do anything important or before bed when I want my nerves to shut up and let me sleep.

I tried compounded topical gabapentin 6% ellage cream as well. it did nothing. I understand that this takes longer to have an effect, like several weeks, but I'm hella tired of patiently waiting to see if something helps only to find out that it doesn't.

so if you can get a provider to prescribe you, via a specialized pharmacy, triple numbing cream that's safe for use on the genitals, it's definitely worth a shot. it can be expensive, fair warning.

no clue how this would work for those with penises. my apologies. I recognize that you folks exist here too.

please help me, people of Healthyhooha! sorry this is long and convoluted. I'll try to organize it.

I'm 26 years old. not sexually active. I have endometriosis and adenomyosis, so for years I've been using birth control continuously (skipping periods) and only having maybe 3 or 4 periods per year. have been doing this for over a decade. oral birth control throughout my teens and Nuvaring for about 3 years. I'm aware one Nuvaring only lasts about 4 weeks. I would use 3 rings consecutively, have a period, and then continue like that. I hope that makes sense.

I had a few yeast infections while using the Nuvaring. more than I ever did before.

in April 2025, I took out my Nuvaring to have a withdrawal bleed as I normally did a few times a year. once the period was over, I put a new ring in, and then in May I had a painful yeast infection (diagnosed at gyn) that caused urinary pain as well as vaginal burning/itching. treated the yeast infection. urinary symptoms and inflammation persisted. was super confused. increased urgency/frequency. urethra burning. even though the infection was gone according to my gyn.

I decided to take a break from the Nuvaring in June 2025. maybe that would help?? I took it out, had another withdrawal bleed, and then had a week of completely normal urination after I was done bleeding (and did NOT insert a new ring). there was a little bit of itching, but I wasn't peeing every half hour anymore, so I was like phew I'm free!

wrong. right before my next period, the inflammatory urinary symptoms returned. then the vaginal burning returned. I was swabbed for every possible vaginal issue. everything came back normal. I was off birth control for a few months before returning to oral birth control in September. the urinary symptoms and vaginal burning have waxed and waned but never disappeared.

since then, I've been in pelvic floor physical therapy and even tried two pudendal nerve blocks. these didn't do anything. I was on gabapentin and then pregabalin as well. neither of those helped. all my providers seem to think this is a muscle/nerve problem. but I really don't think it is. I even tried some heavy-duty antibiotics for potential PID. didn't do anything. I've also tried estrogen cream. doesn't help.

I've tried various types of oral birth control over the past several months. I had an ultrasound confirming adeno. I decided, with my doctor, to try the Mirena IUD for adeno. the theory is that the vaginal/urethral burning may be from adeno inflammation. Mirena IUD inserted about 4 weeks ago now. I came off oral birth control right before the insertion. I bled and had horrific cramps for about 2 weeks. then things started to settle, and the intense urethral/vaginal burning came roaring back.

everything appears normal when I look with a mirror. I have no weird discharge. no concerning smells. I just don't understand. but I'm realizing now that symptoms get wayyyyy worse around my period and especially once it's over. I did an Evvy test in December. results:

Protective Score: 60% Good news - you have a moderately high amount of protective bacteria!

Disruptive Score: 37% You have a high amount of disruptive microbes.

Microbiome Diversity Score: 1.6 You have high microbial diversity, meaning the environment is less stable.

I've read that menstrual blood can mess with the vagina's pH balance. I've also read that, once you've tried everything for vaginal irritation, boric acid is a reasonable next step. I'm trying that now. only birth control currently is Mirena IUD. I used my first boric acid suppository last night. still burning and inflamed today, but I know I've only had 1 dose. I need to be patient.

I've also ordered VagiBiom probiotic suppositories in case that's a good idea. I DO take an oral probiotic every day. I'll be visiting a vulvovaginal specialist this coming September.

the mental toll of having my vagina seemingly catch fire on and off throughout the past year of my life has been pretty hellish. doctors have made me feel like an idiot. lots of crying. lots of ice packs. I only use water to clean my vulva, and I only wear cotton underwear. like... it doesn't seem like I'm doing anything wrong?

anyway, thanks for reading. if anyone has any thoughts/questions/ideas, I'm all ears. I'm ready for my vagina to feel normal again. good grief.

no amount of physical therapy or medication seems to fix whatever happens to my pelvic floor while I'm asleep. I wake up in pain. I'm considering Botox. it's so disappointing to lose all progress while asleep.

has anyone figured this part out?

apologies for posting so often! I have another Mirena question. I got mine inserted about 3 weeks ago. the cramps are starting to subside along with the bleeding! yay! however, a few days ago I noticed pretty bad bladder inflammation beginning. my bladder (and the surrounding area) feels warm and heavy. capacity is limited.

I've been on my pelvic pain journey for a little over a year, and this symptom isn't new to me in general. I've had this feeling before. I'm just wondering if, right now, it's related to the Mirena at all? potentially my body is adjusting to it? have others experienced this as well?

thanks very much 🫶🏻

I got my Mirena placed on June 22. the most intense cramps occurred for about a week. was clinging to ibuprofen. here I am about 2.5 weeks later, and the bleeding is getting a bit lighter. the cramps are maybe half as bad? but they're still pretty bad haha. I'm just curious how long I should expect to deal with this. I know everyone's different!

what's up gamers, hope you're doing okay. I'm trialing a microdose of tirzepatide for PGAD and I'm not sure yet if it's helping. I'll continue to monitor.

I also currently take 25mg Zoloft. I've been on a few different SSRIs in my life, and my PCP suggested maybe switching to Lexapro or a different one to see if the sexual side effects get any better. I'm willing to try, but I'm honestly a bit terrified. my nervous system doesn't function on its own really at all. super cool and fun.

I absolutely cannot take SNRIs - duloxetine sent me to the ER 3 times. I lost 30 lbs in 2 months. was vomiting constantly. my body hates any increased norepinephrine.

has anyone had success with their PGAD symptoms by switching antidepressants? thanks much!

hi everyone, I'm 26F, been in PFPT for about a year.

I think that my pelvic floor issues are mostly due to (diagnosed) endometriosis/adenomyosis and hormone fluctuations. I've had great success with reduction of pain on norethindrone (Aygestin) 5mg daily, but there are so many side effects.

my most unbearable side effect of synthetic hormones is increased inflammation and blood flow in my vulva, which plays a big role in my issues with PGAD (persistent genital arousal disorder). it's either I have pelvic floor muscle pain (soreness, burning, zaps, stabbing sensations) OR I have PGAD. I haven't found an in-between.

I'm strongly considering trying bioidentical progesterone instead of other synthetic progestins. apparently it has fewer side effects and has anti-inflammatory properties.

this is probably a very niche question for this sub, but I'm wondering if there are others who can tell me their experiences with bioidentical progesterone and the effect it has on their pelvic floor (if any). thanks very much!

hi friends! I'm 26, no kids.

I'll be getting the Mirena (or a different hormonal IUD depending on my uterus size) placed in about a month, and I'm willing to give it a try despite all the horror stories. I've tried so many other things that haven't worked, so, why not?

the thing is, I don't have the super heavy bleeding symptom of adeno. I've been diagnosed with adeno on MRI and ultrasound. no fibroids. I bleed a pretty normal amount, BUT I constantly feel like I'm carrying a bowling ball around in my pelvis and am always in pain. it feels like something is sitting on my bladder all day. I deal with a lot of inflammation and nerve pain too.

I tend to gaslight myself about adeno because I lack the bleeding symptom. but I've gone through so many other tests to figure out my pelvic pain, and it seems that adeno is the only logical explanation. a hysterectomy is on the table if the IUD doesn't help. but surgery is a last resort for me.

wondering if I'm not alone in this? are there others with adeno who DON'T have the heavy bleeding? has the IUD helped with pelvic pressure and pain for you?

I'd rather not read more negative stories about IUDs in the comments of this post, since I already know it's very hit or miss. I'll never know how my body will react until I try it.

thanks very much!

any at all would be nice :) maybe symptoms have improved for you. maybe you're in remission entirely. maybe you met a cute dog today. maybe your friend landed her dream job. just looking for hope 💜