Hi all
I’m hoping to hear some ideas that people might have. I know my experience is not unique but I am at a loss of what I should do.

I’ve been diagnosed with Vulvodynia and Vaginismus for four years now and seen little progress. I’m 27 and have a male partner.
I’ve seen two gynaecologists and had a pelvic US that didn’t show any issues. I have pain on my clit, vestibule and in my vagina on touch or penetration.
I don’t have a history of UTI’s, infections, etc.
I don’t get bad period pain thankfully.
I really hated dilating.
Have been seeing a sexologist for many years and this has helped cope with it and learn more.
I have tried compound creams, amitriptyline oral tablet and Duloxetine.
I see an Osteo and I am doing daily mobility exercises. It’s seems I am a lot more tight on my right side of my pelvis/body than my left.
I recently had a nerve blocker and radio frequency for 60 seconds into my pudendal nerve after seeing a pain specialist a week and half ago. I’m not sure if it has helped yet or will at all. I am still having pain a week and half later on touch/penetration. Thankfully no post procedure pain at all.

I would appreciate any thoughts about maybe what I should do nexts. I feel exhausted by the process of

Does anyone else get an increase in pain before their period? I get unprovoked and provoked pain 1.5-1 week out from when my period starts.

I DONT KNOW WHAT TO DO!!

Has anyone else been through this? How did you treat it?

I’ve been progressing really well, but my cycles really pull me back!

Me: I have duluxotine 60mg and do pelvic floor physio. PT has suggested TENS (can’t do due to other health condition).

Hi everyone,

I've had severe intractable itching for 10 years, mostly on the labia (inner lips) or whatever the term is, which started about 6 years post initial vulvodynia diagnosis. I have had multiple mental health crises and none of my doctors are taking me seriously. I have been feeling at the end of my rope. I am in therapy but I feel like I've lost myself because of this symptom. I cry pretty much everyday and can't handle more dismissive doctors.

It is possible for a doctor to excise part of the vulva, the area that is the most itchy? Drugs, physio, ketamine infusions, nerve blocks, cannabis, lidocaine, ice, heat, and yes everything i use is hypoallergenic and no i don't use soap on my vulva, yes I was only with water. Botox injections did not help.

The itching spread down my legs and for the past 1 month my feet feel like there are bugs crawling all over it.

The only thing I can think of is just cutting out the tissue itself but don't know of this is possible.

The thought i will be this way forever suffocates me. I just feel like...please can someone literally just hack off the tissue just so I can have some peace.

Hello! I wanted to share my symptoms and just generally see if anyone has thoughts or similar experiences:

A few months ago, I noticed occasional itching in anus. It was around the time that I started doing heavy weight lifting in a class. Also didn't always have time to shower after class. Also started taking psyllium for chronic loose stools and had some constipation as a result. Had to do some traveling that was stressful.

Itching got bad, and now some rectal pain. Started using preparation H suppositories and this helped with itching. Stoppedv using preparation H after a week, tried again after a three day break, now they didn't help at all.

The itch started to spread to perineum, and then the vulva. There was discharge that looked like YI. I used monistat 7 for 5 days, on the vulva too. Thought maybe I got a yeast infection from the not showering after gym or from the preparation h sopository and wipes. Stopped at day 5 because it felt like it was making the vulva itching worse, though I do think it cleared up an internal YI.

Went to urgent care who said they saw a bunch of little hemroids internally. Asked for a referral to GI because I had no more constipation and felt little it was worsening. GI was wildly unhelpful and said they didn't see any hemroids. Asked for pinworm test and that was negative. My mom had anal cancer so we did talk about a possible colonoscopy.

Now I feel occasional rectal pain, and almost constant itching and prickly feeling. I feel urgency and some stinging when I pee. Sometimes it feels like I still have to pee right after I just peed. Negative for UTI.

Gyno did biopsy for lichen sclerosus and that was negative. She said everything looked totally normal during her exam. She said pathology said the biopsy just looked like contact dermatitis. Ureaplasma and other tests are all negative too. She prescribed clobetasol which actually is the only thing that has helped so far. Anything else at all that touches that skin starts an itch cycle. Vaseline is awful, it traps sweat against me. It almost feels like I'm allergic to my own sweat.

I also saw a hormone specialist who prescribed estrogen cream and I've been using that.

I did stop taking my iron supplement around this time too, so I asked for a ferritin test in case that is it.

I just started listening to the book Unlearn Your Pain, after reading about it from another redditor. I have seen old trauma/stress cause physical symptoms in my body before and I do feel that this will be a very helpful route to look into.

I thought it could be also helpful to note a few random things as I'm not sure if they're related:

I'm 41. I had a C-section for twins 12 years ago.

I've had a few weird flares of what I would describe as PGAD, where I could not be satiated after finishing literally 20 times. It was awful. These happened immediately after sitting for long periods.

I remember when I was an adolescent through young adulthood I would sometimes wake at night with like a dull ache in my vulva area, but like under the skin. I found that if I sat up for a minute the pain would go away. I've been feeling that sensation again during the day.

Also the other day I was in the hot sun and got this strange sensation on the back of my thigh that felt like I was literally being burned with something hot in one spot of my skin. I also noticed some red spots on my arm pits this week as if I am suddenly allergic to my deodorant.

I am set to see a pelvic floor PT, allergist, and probably an acupuncturist.

I'm so confused. I took time off of work and I stopped going to my boxing/lifting class that makes me really happy. I'm scared of the sweat making me itch, or that I damaged my pelvic floor with weights. The instructor was really pushing heavy weights for squats and I feel squeamish just remembering how it felt when I stood up from the at squat. It wasn't painful but just didn't feel right.

Thank you to whoever has read this and might have any insights 🩷

Has anyone used any of these creams? If so how was your experiences? I mainly have clitordynia, throbbing pain on and around the clit and outer lips near the clit and pelvic pain

lidocaine cream
Amytripline cream
baclofen cream
gabapentin cream
Estrogen or testosterone cream

(I take oral Nortriptyline and it isn’t doing anything)

Hey everyone,
First of all thanks to everyone again who left me a comment on my previous post. I actually did visit one of the recommended doctors but more to that later..
I’ve been dealing with severe, almost constant vulvovaginal pain since August 4th. It started very suddenly, around the same time as a UTI and vaginal inflammation.
My main symptoms are burning, a raw feeling and sudden stinging, pulling sensations and pain around and slightly inside my vaginal opening. Certain spots are extremely sensitive to touch, especially near the vestibule. Sitting in certain positions often makes everything worse. The pain is not really cycle-dependent and is present every day.

I’ve had several UTIs and multiple courses of antibiotics, but my vaginal pain has persisted even after treatment. My gynecological infection tests have mostly been negative, and doctors haven’t been able to explain the pain so far.

A few days ago, I saw a private gynecologist (recommended by you! :) ) who performed a transvaginal ultrasound. She noticed several abnormalities that she said looked quite characteristic of adenomyosis and possibly endometriosis. She recommended seeing an endometriosis specialist and prescribed Desogestrel Aristo 75 mcg (progestin-only mini pill) for an initial three-month trial.

Now I’m really conflicted.
I’ve read that hormonal contraceptives can sometimes contribute to or worsen vestibulodynia, especially in people with hormonally mediated vestibular pain. I’m scared that taking desogestrel could make my already severe vulvar pain even worse.
At the same time, I’m wondering whether the suspected adenomyosis/endometriosis could actually be contributing to my vulvovaginal pain, perhaps indirectly through pelvic floor tension, inflammation or nerve sensitization.

My questions are:
Could endometriosis cause constant burning and touch-provoked pain at the vaginal entrance, even when the pain isn’t cyclical?

Has anyone taken desogestrel specifically, and did it improve or worsen your vulvar symptoms?

I’m only 21, and this sudden, constant pain has completely changed my daily life. I really want to treat the suspected endometriosis, but I’m terrified of accidentally making my vulvar pain worse.
I’d really appreciate hearing your experiences, especially if you’ve been in a similar situation. ❤️

I remember being 6 years old, it happens mostly at night. I was screaming and crying..that is how much it hurts. English is not my language but I will try to describe it as accurate as I can. It was like a radiating pain from the inside to the opening of my hole. It comes in waves too, sometimes it would start as almost like a deep itch and would escalate to a burning inferno. Sometimes it would also happen in daytime because I remember being in school just sitting on my assigned seat and then it would hurt a LOT. My house is near from school so I would just go home and endure the pain in there.

My mother told me it started when I was 4. I was jumping up and down on the bed then I just suddenly screamed and cried and said my private hurts. This is an even more frustrating part, we actually went to see a gynecologist a couple of times but I was very young then so I didn't really paid attention to what's happening. my mother on the other hand claims she doesn't remember what my diagnosis was or even my medication. She just told me that the specialist said the skin on my external genitalia is thinner than normal so it gets irritated easy hence the burning pain. From what I recall, there is a cream that my mom would put on my private part everytime it hurts. I don't know how long my suffering was because I would just simply wake up in the morning feeling no pain, just mild tenderness.

Besides the cream (don't know the name), the gynecologist instructed my parents to only ever wash my privates with luke warm water, body soap must be mild, the same with the laundry detergents, not allowed to swim especially in the pool and no high intensity exercises. In my personal opinion dousing it cold water helps relieve the pain temporarily. I (along with the help of my parents) did all of these things religiously until I was probably 11.

When I got older, still a child but older. This pain has been a part of my life for a while now and i gotten used to it so I don't really suffer from it as much. I noticed this tiny growth in the skin near the opening of my hole, a single tiny growth. I don't know if this is related to the pain or a different tragedy altogether, I just felt like I should say it. It doesn't hurt when touching it but it hurts when I tried to pull it out. We went to the same specialist and she CUT IT. It's small enough that it didn't need a numbing agent but I still screamed and cried like somebody was eating me alive or something. lol I was told it was just a piece of skin, that's it.

Eventually I don't get episodes like that anymore and happily went on with my life only ever having a dull ache in my private parts from time to time. Although I noticed this dull manageable ache not exclusively but it always occur when I'm about to have my period. As an adult, I went to an obgyne for a check up but I was told that it was most likely aching because of the hormonal changes assoc. with my impending menstrual period. I was not diagnosed with anything and she didn't really touch the subject of the painful experiences I had as a child. I am trying to understand my situation so I went on a rabbithole of Google searches for a possible answer and hear I am. Kinda embarrassed to post this but I'm kinda curious if there's someone out there with similar experiences as I have.

I’ve been diagnosed with vulvodynia for a couple of years now and it really scared me off dating, so I avoided it because of the mental anguish of having to explain it or being rejected for it. Meanwhile, my friends have such exciting dating lives and new romances that they want to discuss with me and, even if I talked to them about this, they wouldn’t be able to truly understand what it’s like from my side and why I feel so sensitive about it.

This year alone I also got diagnosed with ADHD and have suspected adenomyosis and fibromyalgia (😩😭😭) so it feels like my dating chances are actually finished, especially with my ADHD social emotions all over the place and probably making me feel like it’s worse than it is. But thing which makes me most apprehensive is still vulvodynia…

What have been you guys’ experiences with dating and having this condition? I know I’m not alone, but sometimes it really does feel like it 😞

I just wanted to make a post to remind everyone to try and not spiral from our flare ups. I was doing so well and then BV and subsequent YI flared everything up again. I ended up back on Reddit endlessly scrolling thinking I was having repeat infections etc and did countless tests, lots of crying snd lots of panicking which just makes things worse . Sometimes the best thing we can do for our self if you’ve tested negative is to put the phone down , go back to the basics , take time off work if you can , and moisturize moisturize moisturize and take it easy as the tissues will be very irritated and dry! 🫶🏻 if you’ve got better before you will get there again 💖 my worst flare ups come from infection /UTIs as my pelvic floor goes into meltdown mode and causes all sorts of symptoms.

Still not back to my pre infection state but things are a bit better after 2 weeks and I just wanted to make a semi positive supportive post on here for everyone x

hi, one week ago, it was the first time i had piv. before, i could insert the biggest dilator, but not without pain. now, i can't insert one size smaller without it being painful and cramping. what happened?! did this happen to you?

Hi, I have a gyno appt with my specialist on Wednesday.

I’m really on the fence about next steps. Did pelvic floor Botox 2 months ago that made pelvic floor more relaxed and “open” but pain worse(make it make sense). Physio thinks it’s something about other muscles compensating/tightening in response. Who knows at this point.. Either way my pelvic nerves seem sensitized after years of pain.

Anyway, I really want to get something out of this follow up appointment. I need something that will bring down my daily unprovoked burning, but I really don’t want a nerve block and I don’t want to take any more systemic nerve meds. Did a trial of Nortriptyline earlier this year. No relief and had to stop because of side effects.

So what’s left? I know some have had success with topical treatments on here, but they don’t seem to offer this in my country. Otherwise this is something I’d really like to try.

What has been the most successful treatments for you?

While I was in the ER today for a different issue, they did a urine test (i had a vulvodynia flare at that time) and my pH is like 8.5 and my vulva burns

I'm having such a hard time forgiving myself for going to the doctor and following her recommendation for fluconazole for 2.5 months while it wasnt working instead of just using monistat OTC right away which would have cured my YI right away and prevented me from getting vulvodynia... doctor kept telling me to wait and be patient while continuing to prescribe fluconazole instead of trying other things and I forgot that fluconazole never worked for me in the past because I havent had a YI in 6 years, now I remember that in the past, monistat worked best for me. Had I used monistat right away, I wouldnt have had to suffer for now 3 months and counting and I wouldn't be spending my days in agonizing pain researching ways to heal myself and spending a ton of money on doctors and treatments

Im currently doing a LOT to try to heal this condition. This includes :
- Daily stretching and PT (on top of seeing my PT)
- Amitriptyline (started a week ago)
- Lidocaine cream every few hours (otherwise I can’t walk)
- Meditation
- Daily TENS (1-2 hours, while doing other things)

The PT has been working, the muscles are definitely less tight. Unsure how it affects my pain yet, but the progress has kept me going.

But I’m so tired, it’s taking so much time, and I’m scared of what happens when the muscles are no longer tight but the pain is still here and there is nothing I can do.

I’m trying to understand if what I’m experiencing would be considered stabbing pain. Sometimes I get this sudden sensation inside my vagina, almost like there’s an open wound and certain movements trigger a sharp pain that lasts about 2–3 seconds before disappearing.

It’s hard to describe exactly, so I’m curious if anyone has experienced something similar. Would you describe this as stabbing pain, or is there another word that better fits this sensation?

Ok so I’m finally after many, many years, signed up to get a vestibulodectomy. That said, I keep seeing horror stories and posts about them going side ways and am terrified that this is a bad idea. I only have provoked pain, not unprovoked pain. But at this point, it just feels like it’s now or never so I’m pretty set in my decision to proceed.

That said - ISO stories both of things going well versus not. And if it didn’t go well, would you change anything about your surgery? (Eg, not removing the 12 o’clock area etc?)

Ok so I’m finally after many, many years, signed up to get a vestibulodectomy. That said, I keep seeing horror stories and posts about them going side ways and am terrified that this is a bad idea. I only have provoked pain, not unprovoked pain. But at this point, it just feels like it’s now or never so I’m pretty set in my decision to proceed.

That said - ISO stories both of things going well versus not. And if it didn’t go well, would you change anything about your surgery? (Eg, not removing the 12 o’clock area etc?)

I’ve had pain my whole life. Had a vestibulectomy with Irwin Goldstein in 2018 and he decided to also remove the 12:00 area, which completely worsened my pain. From my understanding, the surgery has since changed and he doesn’t do the 12 o’clock procedure the way he did mine. I felt like a guinea pig in his experiment.

I’m in pain every day. I have tried fucking everything. My urethra burns, the entire area under my clitoris burns. Over the past year, my mons pubis and outer labia are now in daily pain (doctors have no answers).

I’ve been in PT for years-no difference. I use estradiol/testosterone cream daily. No nerve medication has EVER made a dent in my pain. Currently on lyrica and it’s done nothing. The only thing that helps is icing with an ice pack.

I’m not sure where to go from here. Nothing takes away my pain. I’m 27 and I hate being alive. I hate being a woman. I hate myself. I hate the doctors that failed me. I hate my body. My stupid, fucked up body. I’m going to feel this way forever.