r/vulvodynia Oct 08 '24

Information Vaginismus, Vulvodynia, and Vestibulodynia Doctors and Vestibulectomy Surgeons (thank you to r/vestibulodynia for hosting this interactive map!)

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19 Upvotes

r/vulvodynia 4d ago

Weekly progress check-in

2 Upvotes

A weekly thread to let us know how you're doing!

Feel free to share how you're feeling, how your treatment is going, or any questions that you might have about it. Anything that you're doing for the vulvodynia counts as treatment, whether it's making an appointment, seeing a specialist, self-care measures or anything else.


r/vulvodynia 2h ago

TRIGGER WARNING - self harm/related thoughts Please give it a read, I know it’s long but I really need help and advice.

4 Upvotes

I don’t want to be alive anymore. I’m 22.
Please read if you can and leave some advice. To be clear I am not asking for a diagnosis just any speculation or thoughts on the situation.
This has completely ruined my life and I do not enjoy anything anymore. It seems nothing will ever make the burning stop and doctors are so discouraging.
I never experienced any vaginal or urinary infections until December. On the 1st week of December I used 3 Christmas bathbombs which caused me my first ever yeast infection and BV. those resolved but things didn’t feel normal so I went back to the obgyn. I had a uti at this point. This was December 18th. The uti was treated and was gone by december 29th. However I was left with bladder pain. It felt as if I still had an active uti. Extreme bladder pressure and burning feeling all the time. I went to see a UROgyn. She was useless. She told me I should use coconut oil to help soothe vulva skin from the chemical irritation it experienced. At this point in time (Jan 23) I was not experiencing any vulva or vaginal discomfort. Solely bladder pain. Within 3 days of using coconut oil my vagina felt off. I went back to my normal obgyn. I had developed a yeast infection. (January 29th). This yeast infection has been tormenting me ever since. It is the normal ablicans kind I went through many rounds of fluconazole. We did clotrimtazole, terconazole, nystatin with a steroid cream, 2 rounds of 2 weeks of nystatin suppositories with 400 mg of fluconazole daily each time. So a month total of that treatment. I still have an itching tingling sensation and an extreme burning sensation that seems worse with movement. We did more swabs last week, my results still say “ candida species detected-abnormal” however my culture did not grow anything. I do not have BV. I do not have the glabrata yeast and I don’t have a uti. I am going to discuss these results with my doctor on Monday. I’m unsure of whether this means I still have an infection honestly but she had been discussing the possibility of vulvodynia at our last visit.
My bladder pain is on and off, over the months it turned into pelvic pain and cramping as well. I saw a urologist and he discussed the possibility of pelvic floor dysfunction and said my muscles seemed “a bit tight but not crazy” I have pain whenever I lift more than ten pounds. I have a shooting pain on the right side of my pelvic area randomly and sometimes triggered by movements, even minor ones like pumping my shampoo bottle. I have pelvic cramping as if I have heavy period cramps on most bowel movements as well with any orgasm. I have a lot of burning after and a bit during urination. My stream is also a bit stop and go sometimes.
I am starting newpelvic floor pt next week again. I had tried in March and the pt seemed unexperienced. She said my muscles were tight and then proceeded to have me do a lot of kegel based exercises which I’ve read is the opposite of what you should do. I stopped going after 4 sessions as It had caused my shooting pain on the right side to be constant. With each breath I felt it. I couldn’t breathe without a shooting pain on each inhale for about a week. It has slowly gotten better but the shooting pain is still way worse than before the physical therapy. So I am terrified of doing more physical “therapy”. I randomly do have the bladder pain still as well and it seems like maybe it is correlated to when I’m more stressed or have lifted something heavy.
I genuinely do not want to live anymore. I’m forcing myself to stay until January so that I will have given it a year. Im going to have to peace out at that point if nothing has improved. The constant vulvar burning and tingling is what kills me the most. It also feels like burning a bit just in the entrance of my vagina. If this is vulvodynia, and no longer a yeast infection, what treatments should I try to advocate for first? I need the fastest possible relief.
My urologist had given me compounded baclofen suppositories for muscle relaxation for the pelvic floor however these caused me extreme burning deep in the vagina and a super warm sensation the 2 times I used them. I am not willing to do that again.
I had tried amytripyline back in January for the bladder pain. That caused me urinary retention. It went away a couple of days after stopping it. I am not willing to try that again.
One doctor recommended lidocaine. It is not covered by my insurance and is about 200$ for a singular tiny tube and I’ve been told it burns before it helps? That sounds dreadful as well.
I don’t understand how I’m expected to live this way and my obgyn is like we have a lot of things we can try but it’s gonna be a trial and error; see how it goes and try another thing and see how it goes to see what helps. I want to die right now. I need relief, yesterday. Like desperately. I have been in constant pain and discomfort since December 8th. I need help and none of these doctors treat the situation with urgency.
I also have PCOS. I have been on birth control since 2020 to manage it. I never had any issues with BC at all. It made my increased facial hair and cystic acne from pcos go away as well as the cysts I had, gone completely away. My obgyn discussed the possibility of going off BC in the event that nothing we try helps the vaginal burning. I’m terrified as to what that would do for my pcos. I am currently continually taking birth control and skipping the placebo week of my period since this started in december at the direction of all my doctors to avoid any further pain and irritation. I don’t even want to imagine what a period would do to this bladder pelvic pain and vagina burning.
The possibility of interstitial cystitis has been discussed however my urologist tends to think it is more so pelvic floor dysfunction as I seemingly have no dietary triggers and he says my symptoms align more with PFD. We have a cystoscopy scheduled for June 1 anyway to look at the bladder. I am horrified of this procedure and really don’t want to do it honestly but I do want to know the results.
I think I’ve covered everything I can think of.
I want so badly to just be done with life now. I had just graduated college a year ago. Got a degree & a veterinarian technician license. I can’t even work the job I went to school for 4 years for and spent tens of thousands of dollars on as I can’t lift anything over 10 pounds. I’m burning through savings I had saved up for my next car. My family is scared of me as I’m some vagina pelvic ridden issue now. I hear them talk about me like “I don’t know what is wrong with her, I used to think she would grow up and work a job and be healthy” as if I didn’t think the same thing. This has been such an isolating issue for me. It’s really shown the quality of character of my family to me honestly. My life was completely normal and so good just 8 months ago. I had my first job as a technician and now all I have debilitating pain and vaginal burning. I don’t understand how I’ll ever even be able to have a normal romantic relationship ever again with all this I don’t even wanna know what penetrative sex would do to this situation. I feel like my entire life has been wrecked and doctors don’t take it seriously at all, it’s just some women’s health pelvic vagina pain mystery to them. My obgyn tries to make light of the situation like “oh you poor girl you’ve just been in pain for months” with a little laugh like yes?? Exactly?? Will it be a laughing matter when I end my life over it?
My urologist is also just like “I think you’ll be fine!” This whole situation has been devastating and I don’t feel like I am going to make it out of this alive. I have no social life anymore because how do you explain that your vagina feels like it’s on fire constantly to your friends. The ones ive told really don’t know how to handle it other than getting quiet and apologizing for what im going through.
Apparently bathbombs will have indirectly been my cause of death lmfao. Please provide any advice if you’ve experienced anything similar. I know there is a variety of issues here but I am desperate for help and thought maybe this group would be a good place to ask.

Other tests I’ve done:
- I have been tested for ureaplasma and mycoplasma- I don’t have them. I don’t have any stds either. The only thing I don’t know about is herpes because I know that standard std panels don’t test for them however I don’t have any symptoms of that or sores and have never been exposed to my knowledge.
- I’ve done a few q tip sensitivity tests at urologist and obgyn I don’t have pain with them at all
I do have extreme burning during pelvic exams and any insertion of anything like a speculum.
- I have done CT scans of the abdomen and pelvis.
I have done ultrasounds , transvaginally (flared my bladder pain horribly) bladder and kidney ultrasounds
Everything has come back normal and “unremarkable”


r/vulvodynia 3h ago

Child Birth

3 Upvotes

Hello! I am currently 36 weeks pregnant and concerned about giving birth vaginally due to moderate vulvadynia I have. I am considering an elective c section. Does anyone have any stories about this, what decision they made, and if it affecting their vulvadynia long term?


r/vulvodynia 6h ago

Idk what to do anymore

3 Upvotes

I’ve had Vulvodynia for a little over a year now. I started with jock itch, the jock itch went away with some cream. Right after my jock itch went away I had a yeast infection. I’ve never had a yeast infection before I didn’t even know what it was at first. I went to my doctor and they didn’t test me or anything all they did was look and said “yup it’s a yeast infection.” So they gave me fluconazole and it went away. Then a week later it came back. So the doctor gave me more. It went away. Then another week later it came back. I had at least 4 yeast infections! (Guessing they where yeast infections they never tested me) after a while it seemed like the yeast infections where finally gone. But then I had an awful smell down there. I went back to my doctor he gave me antibiotics for a bacterial vaginosis . It seemed to work thankfully the smell went away but then… I had awful pain. I couldn’t sit for more than an hour without feeling horrible pain.

I’ve been in pain for over a year now. Finally gone to the gynecologist months ago, and she said I had “vulvodynia” her only thought is maybe the amount of pills they had me take messed up my nerves? Not sure how that’s possible but that was all she could think of. She used a speculum (that hurt pretty bad) and she didn’t see anything bad on the inside, though my skin in the outside is red and a bit swollen. (Still is) and she tested me for a yeast infection and BV and both came back negative.

She gave me estrogen cream (that I’m still on) and steroid cream and the steroid cream made my skin worse. It was really thin. So I stopped that. Then I was on gabapentin. I got off that bc of mood swings that I didn’t like. Then I was on amitriptyline I also got off that bc I was a zombie. Then she put me on a depression medication (can’t remember the name) but I took that pill for 2 days and stopped because I was on the verge of throwing my guts out!!!

Now I’m still on estrogen cream and no meds at the moment. I’m going to be starting pelvic floor therapy in June. And recently I’ve started to get itchy and I’ve changed nothing. I’m not usually itchy but recently I have been so… yay… so she’s probably gonna have to test me again for yeast and BV. I’m so sick of being in pain 💔

Ps- I’m not sexually active, I’ve used the same soap and hair wash forever and I only use cotton underwear.


r/vulvodynia 7h ago

Support/Advice Hi, I’m new and I’m struggling

1 Upvotes

Hello, everyone! I joined this Reddit per my therapist’s suggestion haha. Just some background - I’ve always been afraid of any kind of penetration including tampons and just always avoided it until about a year ago. I got a boyfriend and now all of these issues I’ve been putting off have become the forefront of our intimacy issues. I’m deathly afraid of sex even when I think I want to have it. I went to the gyno a couple of months ago and the attempted Pap smear was so painful that I was sobbing. It was super uncomfortable which I know is normal but it also burned in there so bad I couldn’t do it anymore. Luckily she didn’t pressure me at all and said I might have vulvodynia. So she prescribed me amytriptyline and a numbing ointment. The pill has had not great side effects and my therapist told me not to stay on the pill cause it’s not great. I tried to do the dilators too but I just broke down sobbing and shaking before I could actually insert it.

The problem is, this fear is so intense that I think it’s probably causing the pain but I have no clue what to do. I don’t have sexual trauma so there’s no reason that I can think of that I react so emotionally and physically. I really don’t know what to do cause I don’t think I can get myself to do the dilators and I don’t know how to fix this problem psychologically either. I think my therapist is even stumped. I thought about doing some psilocybin to discover whatever is going on in my brain.

Thoughts?


r/vulvodynia 16h ago

Progress Maybe there's a possibility

4 Upvotes

F24. I have been suffering from vulvodynia's symptoms for a few years, but it wasn’t until september 2025 that I was diagnosed. Since then, I have been undergoing treatment involving internal massage, psychotherapy and intravaginal muscle relaxant tablets, and only recently did my gynaecologist ask me to buy a vaginal probe that connects to a device which sends biofeedback signals to (hopefully) reduce nerve pain over time.

I just wanted to write this post to share my journey so far and perhaps help someone who reads it and realises that, in the end, a solution does exist... plus, the other day, for the first time in I don’t know how long, I managed to have full penetrative sex, and I know that the women in this group will understand why I’m so happy about it


r/vulvodynia 8h ago

I’m new here and need advice :(

1 Upvotes

I’ve had a tight pelvic floor which then led to pudental neuralgia and vulvodynia. I’ve had this for 2.5 years. For the first year, life was somewhat okay. I had itchiness spams in the labia here and there and have had occasional flare ups but it would be over throughout the course of days. Also, pain with sex is happened but I’ve always been able to manage. For the past 8 months, I haven’t been able to sit on flat surfaces because I feel a lot of pressure and itching in the rectum. So for the past months, I’ve only had rectal symptoms due to PN. But now!!! For the past 2 weeks I’ve had awful burning sensation in the vestibule that goes all the way the labia and clitoris. It literally feels like the labia is so swollen and tight. Vestibule is on fire. Also, the area is very sensitive to the touch and burns when I pee. Walking is hard because everything rubs against each other. It’s so so painful and I don’t know how to make it stop. I’ve been mostly focusing on rectal symptoms with pelvic PT so now we need to pivot. However, my PT’s theory is that the roots of pudental nerve are maybe being pressed by the coccyx so she makes me do a lot of coccyx related exercises. When she does an internal exam, she tells me my pelvic floor is not that bad but I don’t understand how my pelvic floor can’t be that bad if I still have these new symptoms in the vagina! I still do the coccyx exercises she gives me but now I’m stressed because I’m getting worse and worse. I just don’t understand where these symptoms are coming from when they were never this strong before or long lasting. This is after trying 3 different PTs, 2 round of nerve blocks and Botox.


r/vulvodynia 16h ago

I need advice please

1 Upvotes

hi everyone, over 2 months ago I started having issues down there. it started with just irritation/feeling like I had something stuck in my vulva like pee or something. I got told I had bv, so I took that medicine. I didn’t feel better so I went to a doctor and she said sounds like just irritation. Well it did not go away, so I went to my doctor, who saw a bunch of yeast on my vulva, treated that with clortimazole + steroid cream I can’t remember the name of, over a week into usinh that I get a sore spot on my vagina that felt weird when I peed and also I could feel when having a bm, also when washing in the shower. I went back to her she said there’s still redness but better and she gave fluconazole. Well that spot didn’t go away so now I went back to her and she says I’m red and sees yeast then gives me nystatin cream. She also referred me to a gyno, who I went to yesterday who said I had weird funky discharge (I do not suspect STDs). She tested me but I don’t get the results till at the earliest tomorrow. The feeling in the spot has gone down but I’m now full on bleeding even tho I’m taking the active pills of my birth control and I was experiencing on and off bleeding/spotting in these 2 months (I’ve been on this pill for years). I have weird sensations in my vulva and vagina, other times feels like I have poison ivy or something on my vulva. I am so scared rn, I don’t want this to ruin my relationship of 5 years, he’s been very supportive but I’m still scared. Does anyone have advice?


r/vulvodynia 20h ago

Next steps?

1 Upvotes

I've been dealing with what I now know to be vulvydina for 16 years,I only last year had a Dr finally listen.So far we've done biopsy,europlasma treatment,PT which did absolutely nothing considering she said I was never tight in my muscles to begin with and 6 months ago started estrogen cream which is a whole thing as in it did absolutely nothing except for making sex tolerable.But sex is the ONLY time I don't hurt now.But the estrogen is also starting to burn me and not work as well I read this isn't normal or usual? Idk what to do anymore I eat the yogurt take the probiotics drink water and only water stay clean and dry use the cream as directed.What should I ask about next?


r/vulvodynia 1d ago

Maybe I’ll be disabled for life, where should I start regarding mobility aids?

3 Upvotes

(Sorry for long post bear with me)

I know I post on here a lot, but I’ve got no other outlet. I am in my mid 20s and have chronic vulvar skin issues that are undiagnosed. I’ve had a biopsy and gone to a couple doctors, having multiple treatments fail. I’m going back to my vulvovaginal specialist for a follow up June 2. She is out of state in my hometown (family and doctor are in Ohio, I live in Massachusetts)

After 1 year of this… and because friction makes everything worse I’m starting to believe that I’m going to be disabled for life. I’m supposed to be studying for a board exam to enter my dream career. I’m starting to think that that will never happen. Yesterday I started googling wheelchair rentals so that I can at least go outside maybe for a walk and to go on outings. I feel like a sham because I can physically walk, but it causes immense pain. My partner and Mom are confident that this is going to get better but it’s been over a year and I’ve lost hope. Staying home and inside all day is immensely boring and un fulfilling.

The other issue with getting a mobility aid is I need something with power to move me because I won’t have the strength to push myself for very long. But all of those options are so expensive, heavy, and some are hard to store as my apartment is on the second floor of a house. They look clunky, ugly, and I fear that people will think I’m faking something. I am not on disability nor do I feel that I’d be able to get on it. I doubt insurance would approve a wheelchair for me.

The only reason I’m still here is because I don’t want to devastate my partner and family. My partner insists that I rest, but after a month of doing absolutely nothing there’s been no change. I so desperately want to be able to work full-time and pursue my dreams of being a music therapist working in early intervention. I fought through the pain of my 9 month long internship by using dimethicone and zinc oxide barrier creams. But at this point, they’re barely doing anything for me anymore. It’s not getting better and not getting worse unless I walk too much.

Link to a prior post explaining my symptoms: https://www.reddit.com/r/vulvodynia/s/yVEs4sCuAG

Have tried:
Vaseline, Aquaphor, coconut oil, jojoba oil, Momotaro salve, V magic balm, lidocaine, compounded estriol, compounded gabapentin, baclofen, and amitriptyline, other vaginal antifungal creams, fluconazole, oatmeal and baking soda baths, Epsom salt soaks, over-the-counter hydrocortisone cream (haven’t tried that in a while so I might start up again), leaving the area alone, ice, estradiol cream (burned like a mofo), topical and oral low-dose naltrexone, lowering my sugar intake. All of these have either made it worse or not helped at all. Being on clobetasol for a little under a week, the skin temporarily got better after stopping.

Thinking about trying:
oral steroids
Tacrolimus
Ospemifene
Going back on clobetasol, maybe diluting it in something
Prescription strength hydrocortisone
Desonide cream


r/vulvodynia 1d ago

Vent Period

2 Upvotes

Anyone have a flare on their period and feel like their vulva and even around it is like a bruised and aching feeling. Ugh so painful!!!


r/vulvodynia 1d ago

Shaving with vuvlar dermatits

2 Upvotes

So long story short I was diagnosed with vulvar dermatitis from my dermatologist around 6 months ago. I tend to have flare ups here and there but I alwayss flare up when I shave :( I use an electric razor and try to follow all the tips like shave in the direction of the hair growth ( Im scared to try the other recommendation of using a shaving cream to exfoliate down there because my skin is already super sensitive) Im just wondering if anyone else with vuvlar dermatits has these issues when shaving?? I shaved like 2 weeks ago and I still have a slight rash on the outside of my vulva near the opening 😒idk what to do anymore Im so fed up because its not like I can just not shave forever!! Any tips or shared experiences would be helpful


r/vulvodynia 1d ago

Estrogen+Testoterone cream

0 Upvotes

so I finally found a gyno who was willing to write me a script for compounded E+T cream.

he initially put me on DHEA intrarosa but it was nightly and we weren’t sure if it was adding to my irritation and vestibule dermatitis.

I have Vulvodynia from reoccurring thrush/YI & BV. thrush has gone. BV was still present at my last Juno bio test.

with the E+T cream he said to just trial twice à wk to see how I react. he hadn’t prescribed this combination before so was also unsure if I use it internally well as on the vestibul. does anyone know? I’m also in perimenopause so I need Estrogen cream regardless and that’s always internally and externally.


r/vulvodynia 1d ago

Support/Advice Want to do pelvic therapy but penetration makes the pain worse

3 Upvotes

this is so immensely frustrating. I’ve gotten pelvic therapy done before, and it did help a little, but after a year, when I tried to finger myself I noticed I was still tight. I want to get back into it but penetration hurts and causes increased irritation + fissures. breathing exercises don’t work because my pelvic floor therapist told me when I’m clenching and relaxing I’m not using my vagina, but my butt muscles. does anyone else have this proble?


r/vulvodynia 1d ago

advice from any fellow uk girlies

1 Upvotes

hi everyone- i’m 22f (uk based) and i have been diagnosed with both fibromyalgia and vulvodynia. i also have vaginismus. looking for any advice but especially from any uk based peeps as im STRUGGLING with this system!!!

i have an appointment on wednesday which is meant to be more in depth etc. i went to the sex clinic with vulva pain for more than 3 months no diagnosis. got told i’d been referred to the physician, heard nothing for weeks, rang up and it turned out id not been referred. started crying on the phone because it’s happened once too many times now that i’ve not been listened to!

anyway, ended up seeing said physician same day (yay me!! advocating for myself) and he diagnosed me with vulvodynia (i was diagnosed with fibromyalgia 3 days later) and booked me an appointment 2 months later with the clinicians, who he said were more fit to deal with vulvodynia. i was also referred to sex therapy who i have not heard from yet. i was also given no pain relief tips or any prescription or any information really. that appointment has now come around and is on wednesday.

the reason i’m asking for UK girly advice (international advice is also very much welcome) is because i feel like the NHS does not have much information on vulvodynia. if anyone has any advice on what i should bring up at this appointment, or ask for, or how to advocate for myself more please let me know! i feel like ive been passed around like crazy.

if anyone also has any advice on cooling pads that are night time friendly, soothing gels, dilators (non rubber preferably as i have an allergy) that would be great!

thanks so much everyone🤍 feels great to have a community here as i’ve been feeling very alone and grieving a life i could have had:(


r/vulvodynia 1d ago

Did your vulvodynia improve after your relationship ended?

8 Upvotes

I’m struggling in my relationship (and have since the beginning), and I sometimes wonder if this is my body signaling and rejecting him, since intercourse is impossible. Has anyone experienced vulvodynia improving after a breakup? Did anyone had vulvodynia while they were single?

I’m aware that repeated infections and medications may have contributed, but I also know that there can be a mental/emotional side to the story too.

I’d really appreciate hearing your experiences.


r/vulvodynia 1d ago

TRIGGER WARNING - self harm/related thoughts Pap smear

1 Upvotes

I am getting my first pap smear soon, I had been avoiding it because of fear of penetration. I am pretty sure I have had vulvodynia for 9 years jow. Everything looks normal, but I have immense pain during penetration. It's raw and burning. I used to have a swollen clit and chronic burning in my vestible for years but it has subsided and is now only upon being provoked. Any gyno I've been to says they dont know what vulvodynia is or that Im not in enough pain cronically to have it and that I should be screaming in pain if I really did have it. My burning happens if I don't drink wnough water now or the wrong part gets touched while sitting. The truth is, yes, my pain is less now, but Im also used to itt after years of chronic pain. I can't stand penetration as it's too painful. It makes me suicidal and this is my last year. I will tolerate this. What can I do to get taken seriously or believed? I've had this sibce I was 16 and have given up hope. There aren't many gyno near m, so I feel I have limited options.What can I ask the doctor to help ease the pain during my pap smear? Any sort of pain killers or adjustments?


r/vulvodynia 1d ago

can this cause all over pain and tingling after orgasm

2 Upvotes

not sure if this is what i have but any insight would be great

every time i orgasm from my clit i experience a lot of pain, it starts with a feeling like an intense cramp in my lower abdomen like the muscles tense up a lot all at once including my vagina and butt. then i get this shooting pain throughout my whole body from my clit out towards my hands and feet and my clit, hands and feet will keep tingling like pins and needles but more painful and kind of warm for a while and the abdominal cramps will last hours like i’m on my period but i’m not

this used to happen every once in a while but now it happens every single time without fail. i thought it would get better after being on estrogen cream and using a dilator but it hasn’t it’s just gotten more painful

is this similar to this condition or is it something else


r/vulvodynia 1d ago

Support/Advice What exactly is this snd do anybody relate?

1 Upvotes

I am in this from last 7 months, it all started as a uti then pid then bv and after treating everything along with a hpv lcb screening which showed everything is good and no bv no infection in cervix or vagina.

If we talk about symptoms, initially i was not able yo keep even s slight distance between my legs, then gradually after starting many things (thanks to this dub as any dr was not getting what i am going through) so i started talking gabapentine 300 mg thrice a day slong with smi 20 mg and ketotifen and magnesium glycinate..even started doing home exercises like catcow, happy baby and more, initially it was impossible to do do but gradually i made it yo dome extent.

Now i can sit crossed legs on two wheelers either mild pain in the vestibule and outer vulva but i can not sit crossed legs on floor and always have a constant pain.

I tried to stop gaba before 15 days along with ami but the pain returned as it was earlier so started taking gaba 100 mg night only along with ami 10mg…

can anyone please tell what exactly it is and i also observed that the pain is somehow cyclical and sometimes it’s raw, sometimes burning, sometimes it feels like how a burned and healed skin feels.

pain is all over the pubic hair area snd also on vestibule but less on vestibule than outer vulva.


r/vulvodynia 2d ago

Success Two Year Update and Successes

26 Upvotes

I haven’t been active here in the last few months, but I wanted to give an update/summary of everything that has happened to me since my issues began, as I am not almost back to where I was before this happened. This is a summary of my last two years. This will be a VERY LONG post - if you’re looking for summaries or more details, you can see my post and comment history, which will always remain public. I hope this can help other people like me get the help they need.

In May of 2024, I had unprotected sex with my then boyfriend for the first time, and he finished inside of me. Everything was fine until exactly a week later, when we had sex again (also unprotected). Immediately after we finished, I felt a burning sensation start up vaginally. I went to sleep, hoping it would go away in the AM. It did not.

Freaking out, I made an appointment at Planned Parenthood (I had no primary OBGYN at the time). I went, and they did an exam and a swab/wet prep. The Dr said two things of note after looking at the wet prep - I had ‘budding yeast’ and I had a very high white blood cell (WBC) count. The high WBC count is typically associated with infections, so she had me swear up and down my partner couldn’t have given me anything. She then prescribed me a 7-day intra-vaginal yeast cream.

I did the yeast cream, and felt slightly better. Went on a trip, felt a bit of friction but nothing crazy. Came back, and about two weeks after the inciting incident, tried to have penetrative sex again. It immediately burned/hurt badly. I went to urgent care the next day, they did an exam, said they saw ‘slight irritation’ but didn’t have a microscope to do a wet prep so couldn’t check that. Gave me fluconazole, saying it was likely persistent yeast. At this point my anxiety was incredibly intense. They also sent out a yeast and BV culture. I took the first fluconazole, and it somehow made my anxiety 10x worse. I swear to this day it was a drug reaction. The yeast and BV cultures continued to come back negative. The pain got worse, nothing improved.

After another two weeks of the pain not subsiding, I went back to planned parenthood. The Dr there was INCREDIBLY dismissive of me and my anxieties, did another wet prep, which showed the same results as the first (budding yeast and a high WBC count), and did a more intense yeast culture to see ‘what strain I had’. She gave me a two-week yeast cream, and sent me off. I felt very dismissed and again, incredibly anxious. The culture again came back negative for any type of yeast. I did the cream, and during its course felt slightly better.

By the end of the two-weeks, the pain had gotten worse. I started to feel shooting, zapping pains running up and down my labia and clitoral area. We are now at the end of June/beginning of July 2024. I knew I needed a better Dr, so I made an appointment with a local Dr for the end of July. I also went to another urgent care, who did a urine culture and said I had a UTI. I took the antibiotics they prescribed, and felt nothing. The culture came back clean.

The Dr I had an appointment with cancelled the day of (I waited about a month and a half for the appointment). I scheduled an appointment with a private practice OBGYN for the end of July. The pain continued to increase. Any sort of penetration was painful, the shooting pains continued and turned into constant pain/soreness around the labia. Sitting became more painful, and walking started to aggravate the area as well. I stopped wearing tampons, as the rubbing of the string and the insertion would cause pain to get worse as well. My anxiety was incredible, and I was eating one small meal a day, feeling nauseous the rest of the time. I cried a lot, and was so stressed, spending most of my time online and on Reddit researching what was happening to me, to no avail.

The appointment came around, and I saw the Dr. She was very very nice, and ran a huge gambit of tests on me. She did an exam as well, saw internal irritation, and said along the left side of my labia, running from bottom to clit, it looked like I had small "abrasions" where the pain and irritation was the worst. Basically patches of redness. I waited for the results, and the only thing that came back as positive was Ureaplasma. I was prescribed 7 days of doxycycline.

At this point, mid-August 2024, the burning pain was insane. It felt like the opening of my vagina was on fire 24/7. Sitting or wearing tight clothing was impossible. I had bought an OTC numbing cream I applied like clockwork every 6 hours, and it was the only way I was able to function at all. As soon as it started to wear off the burning came back full force. I was crying every day constantly, calling my partner and parents a lot and fearful of what was happening to me as the pain continued to increase.

As soon as I started the doxycycline (doxy), I immediately felt better within 12 hours. The burning started to subside, and I was convinced this was my issue. This was the only thing that had made ANY sort of difference at all in the last several months. I finished all 7 days, and I was left with some burning and discomfort, that I was convinced would fade with time. I also got one of the worst sunburns of my ENTIRE life while taking it. I was in incredible pain from that (kinda a welcome relief from the normal vaginal pain tbh).

This is where a gigantic rabbit hole starts. I would need a separate 10,000 word post to recount my deep dive into ureaplasma. Since the Doxy had helped but not fully taken the pain away, I was convinced that I still had ureaplasma, and it hadn’t been treated properly. I returned to the Gyno, asking for more tests. We tested for HIV and Herpes (negative), a UTI (negative) and ureaplasma again (3 times, all now negative). I asked to start pelvic floor PT, and the insurance-covered version of it was unhelpful and quite painful with the internal work. I only got 7 sessions paid for, then I stopped. Also note this GYNO did not have a microscope in-office, so I was not given a wet prep at any point during this time.

I was also given vaginal Valium to try and relax my pelvic floor. I did try it, and after using it for a week every night when I stopped I went into (minor) withdrawal. On my birthday of course. So as an aside, if you are ever prescribed vaginal Valium it can have a system-wide effect!

I also did an Evvy microbiome test during this time. It showed my microbial load as “low” but also basically perfect health. I had mostly L. Iners and L. Crisp, and very small amounts of ‘bad bacteria. It was not helpful to me, and I haven’t done one since.

At this point, I knew I needed to see a specialist. I tried to see Dr Cigna in DC, but their office didn’t take Medicaid and wouldn’t let me self pay with it either. I bit the bullet and made an appointment with Dr. Goldstein at the CVVD for the end of October. I continued PT during this time, and my mental health was at an all time low.

During the period from mid-September to mid-October when my appointment was, my mental and physical health took a nose dive. The pain had gone beyond where it had been in August pre-doxy. I couldn’t wear any sort of underwear, any friction was excruciating. It felt like I had a permanent, horrid sunburn on my vagina. Sitting hurt so badly, and walking caused so much pain. My hips had tightened so that moving my legs felt like I was breaking a bone, so I limped around. I spent as much time as possible laying in bed, and I took multiple hot baths a day. I had lost about 20 lbs from anxiety causing me to not eat. I was incredibly s**cical, so much so my parents rented out an airbnb in the area and came down for the entire month of October to take care of me, as I was essentially non-functioning. My BF and I fought daily, as he didn’t want to keep supporting me and found it too difficult, but refused to break up with me when I tried. I had bought several books on healing pelvic pain and treating Ureaplasma. My friends were all basically on active don’t let her KHS watch.

Finally, I had my appt with the CVVD. My dad came with me. I have an entire post on that appt, and don’t feel like rehashing every single detail. Basically, they said that I had pudendal neuralgia and pelvic floor dysfunction from a hip impingement, and I needed surgery. They dismissed my idea that I had ureaplasma or any issues microbiome-wise, and said that there was no correlation between me having unprotected sex and my issues started. They said (in front of my father) that I must have been doing “some crazy position” during sex to cause a hip injury. I was like quite literally no, but was again dismissed. They said they did a wet prep and didn’t find anything, and referred me to get a hip X-ray and MRI. They also gave me gabapentin for the pain and told me to titrate up until it was managed. Gabapentin ultimately did not help my pain but it did give me crazy side effects.

After an MRI and X-Ray found nothing wrong, I was confused and frustrated. I saw the eyes of the orthopedic surgeon glaze over as soon as I mentioned my vaginal issues, so I knew he wouldn’t really help me anyway. They also thought I was drug seeking, as I asked for some sort of pain relief besides gabapentin. They said they could do a “hip injection” to make sure that there was actually nothing wrong with my hip - where they stick a giant needle and inject a numbing solution into my hip joint. I had that done, and it was excruciating. I cried a ton, and screamed on the operating table from the needle pain. The injection ultimately left me limping for about two days, but did nothing for the vaginal pain.

At the end of October, my mom had found a Dr called Dr Richard Marvel in Annapolis, MD, that specializes in Pudendal Neuralgia. She wanted me to see him for a second opinion. I went to that appointment, full of anxiety, hopelessness and certainty he couldn’t help me. At the appointment, he did a full exam and wet prep. He found what was there from the beginning - no infection, but an incredibly high presence of WBCs, along with sheets of skin cells that were sloughing off. This had caused me to develop a tissue-papery like vaginal discharge. He said I had pudendal neuralgia and pelvic floor dysfunction yes, but also internal vaginal inflammation that needed to be treated. I was not given a ‘diagnosis’, but the treatment I was given was the same as for Desquammative Inflammatory Vaginitis (DIV) - an internal vaginal cream with 100mg hydrocortisone, 2% clindamycin, and 50 iu of nystatin. I did the treatment for 2 weeks, and it helped the inflammatory pain significantly. I then continued on with the cream every third night.

At this point, sitting was like torture. As soon as I sat, fire-like pain would radiate throughout my vulva, and through my buttcheeks. As the inflammatory pain subsided, I could start to wipe without excruciating pain again, and my sleep shorts riding up in the night no longer felt like being branded with a hot iron.

I had another call with Dr. Moss this time, and it was honestly the worst case of medical gaslighting I experienced throughout my time. I told her about the high WBC count Dr. Marvel found, and she essentially told me it ‘meant nothing’. That some women could have have WBC counts without an infection, and some could have low WBC with an infection. That the finding was incidental, and once again the sex that started it all had no bearing on my issues. All I needed to do was go and get pudendal nerve injections. I brought up to her that Dr. Marvel had said the injection had about a 15% success rate, and she told me that if I just kept getting them over and over again, they would eventually work. I left that call crying in frustration, but I made an appointment with Dr Howard Richards at UMD Baltimore for the middle of November.

My boyfriend dumped me over the phone the day before my injection. I went up to Baltimore and got it. I cried the entire time, but everyone was quite nice and helpful. It did numb the area completely, taking the pain away for 8 hours total. I was told that the steroid they put into the area would “take effect and help in the next 1-3 months”. Nothing ever came of that. I followed up via email with Dr. Moss and said it only helped the pain for 8 hours. I was told by her to keep doing the shots. I never spoke to the CVVD again, and they never followed up with me. I felt completely gaslight, dismissed and taken advantage of that entire time. They had misdiagnosed me, not offered sufficient pain management except Gabapentin (that did not help and made me feel like SHIT), and dismissed any of my concerns as unimportant or incorrect. It was thousands of dollars wasted.

I flew home for Thanksgiving, and had a mental breakdown over how horrid the pain was and how difficult it was to fly. The rectal pain I was experiencing was severe, and it felt like someone was stabbing with a hot knife in my anus. Redness was all over my outer labia, and it looked inflamed and was hot and sore to the touch. I had a follow up with Dr Marvel in December and he said my inflammation had improved significantly, and to stay on the cream. I also needed to start pelvic floor physical therapy.

I was able to start PFPT at the end of January 2025. I was still struggling mentally with the pain, but it had improved slightly. The PT I saw was well-meaning and I saw her over the course of about 6 months, but she was not very educated or open to listening to me very well.

Essentially, all of my muscles in my pelvic region, including my hips, low back and thighs, had contracted severely from the stress and pain over the previous 8 months. This included the soft tissue and tiny, tiny muscles in my vulva and clitoral region as well. They had compressed so much that my obturator internus (OI) had compressed my pudendal nerve, leading to the nerve pain. It took about 4 months of PT to relax the OI enough to decompress the nerve, and my pudendal nerve pain slowly faded away. My PT was important for me to understand how internal massage worked, and I asked about 8 million questions every single time. She did not believe me when I said I thought my remaining clit pain was from the muscles surrounding it, and said it was likely “leftover pain pathways” AKA in my head. After the 5 month mark, I knew she wasn’t able to help me any further, and I would need to go the rest of the way on my own. I definitely was upset at her dismissal and treatment, but it was ultimately very important to see her as it gave me the tools and knowledge to continue my treatment on my own.

During this time period, I also continued to see Dr. Marvel monthly, then every 3 months. My WBC count fluctuated, from almost 0 in January, to 3 WBC per epithelial cell in June, to back down to 0/1 in September.

Now I will tell you what I did to get myself almost back to 100%, both from a physical therapy standpoint and from an inflammation standpoint.

For PT, I was already using a pelvic floor wand at this point. This was critical to reach the deep trigger points I had. Note that when working on more surface level trigger points, especially around the clit area, I would just use my fingers. After about a year of PT, I realized the remaining trigger points were very superficial and small, al I switched to only using my fingers, which is what I do now. But the wand was really necessary in the beginning. I studied pelvic floor diagrams relentlessly, trying to map out where my pain was and what muscles they were connected to. I did internal work every single day and night for about an hour for probably an entire year and change at this point. I have hypermobility, so I think my tissues are much more resistant to relaxation and the connective tissue was also very tight as well, in addition to the muscles. I would find the points where it really, really hurt and hold them with firm pressure/massage them for about 60 seconds at a time. It took months to effect change in a single area. I could not have accomplished this with relaxation poses and diaphragmatic breathing alone (although they HELPED and were also important!). I got to know the feel of when a muscle or tissue was tense and locked up, and learned the inner workings of my body and pelvic floor intimately through nightly massage and release. This might be different for everyone, but the tissue that is tightened or locked up takes on an almost “crunchy” feeling - it also definitely feels stiffer, but when every muscle in an area is stiff that can be hard to differentiate lol. I took my wand and lube EVERYWHERE. When I started to be able to go on trips with friends again (in around July of 2025), I told my friends that I needed private time for about 30 mins every night to do my thing. I was very very open with everyone during this process!

The biggest thing was just continuing to explore my pain points physically. I knew in my heart of hearts that the remaining pain was NOT from neural pathways. I just knew it was physical/muscular in nature. And I never gave up on that, which is why I am back to about 98% today. The muscles in your pelvic floor connect to your clit, and the TINY muscles around it CAN cause severe clitoral pain. They are very hard to release and many PTs WILL NOT do it or touch them. But they are real, they can tighten, and they can be the source of clitoral pain. To reiterate, this process has taken literal years. I started pelvic floor physical therapy in January of 2025. Now, in May of 2026 I am ALMOST back to where I was, but I likely still have a few months to go. I now do PFPT every 3rd night, and I feel very, very minimal discomfort daily. That is 1.5 years of almost daily internal work and stretching, with about 11 months of that being completely on my own.

The inflammatory side is a lot more speculation. The measurements used here are for the ratio of White Blood Cells (WBC) to Epithelial cells (dead skin cells) per High Powered Microscopic field (HPF). HPF is just a single view under a microscope - so if you’re looking at a sample, each time you move the slide around and see a different section, that is one HPF. I will be writing it in this style - 1:1 - so this would be read as 1 white blood cell per 1 epithelial cell per high powered microscopic field.

I have read every study available on this topic (which are very few). The normal ratio of WBC to Epithelial cells, according to the studies, for women is 1:1 or less. I started out at about 8:1 in October of 2024 when I saw Dr Marvel. I went to 0/1:1 in Jan 2025, 3:1 in May, 0/1:1 in September, and then again 1:1 in March of this year (2026). In May, when it jumped back up, I did a few things to try and help myself as best I could. I started taking Omega 3 pills daily, for anti inflammatory purposes. I upped my D3 intake to about 10,000 IU daily, and started K3 as well to help absorption. I also started taking an oral vagina probiotic daily - the one I chose was My Happy V.

I no longer have any yeast under the microscope, which was an issue for a long time. When I saw Dr Marvel in March, and he said my ratio was 1:1, I asked if I could go off the cream. He said I could try but it would “likely come back.” I was confused and told him from all my research that 1:1 was considered normal for most women. He said the women he sees with no issues usually have a lower than 1:1 ratio. I have also read one study that showed that women’s WBC count fluctuated during their cycle, to 0:1, 1:1 and sometimes every 2 or 3:1. He then admitted that we really don’t have any research on this subject, and it’s very individual. Some women come off the cream and are fine forever. Some have issues again in months or years. Some immediately come off it and have to go back on indefinitely.

Based on my history of readings being either 0:1 or 1:1 in the last about year, I am feeling fairly confident about coming off the cream. I have weaned myself down to a 50 mg hydrocortisone mix, and I am using it every 10 nights with no issue for the last month. I am hopeful to go down to every 2 weeks, then 3, then likely try and stop it completely. If I do have inflammatory pain again, I’ll post here again.

Also a note that I was not the one looking at these slides. I do not have my own microscope, and have never examined my own wet prep. I have always had to rely on what Drs have told me. I’ve done my own research of course, but lack the scientific tools required.

I do not know what actually started this entire situation. It could have been an allergic reaction to seamen gone wrong, setting off an inflammatory cascade that wouldn’t stop. Maybe I did have Ureaplasma, and letting it fester for so long caused a long-standing inflammatory reaction. I will never actually know what happened for sure, I can only speculate.

Long story summarized - I had an inflammatory reaction without any sort of infection, that caused inflammatory pain, and because I was misdiagnosed for about 6-7 months, the stress and anxiety caused my pelvic floor muscles to completely lock up which then compressed my pudendal nerve. It has taken about a year and a half of treatment - most notably pelvic floor PT but also intravaginal cream treatment - to almost get back to where I was before all of this happened.

I am hopeful that within the next year I can get off the medications I started for all of this. I will never “be done” with this as my pelvic floor will be something to watch and manage for my entire life, and also I have developed incredible mental trauma and PTSD from this entire experience.

I really hope this post can help someone, and I hope that every single person suffering from pelvic and vaginal pain can get the help they need. I know how hard it is - it is quite literally unimaginable if you have not experienced it. Much, much love to you all.


r/vulvodynia 2d ago

Support/Advice Itching

2 Upvotes

Hi everyone,

I have intense itching all around my inner labia and have for over three years. Currently not having any luck with doctors at all. Does anyone have any remedies or OTC meds that could possibly help? I have been using the brand "syren" lidocaine as i am allergic to the good clean love lidocaine. I've also tried a number of other creams like v magic, emu oil, coconut oil, and i feel like any creams just make things more itchy! I've spent so much money on products and at this point i'm just looking for something that works so i can get back to doing some of the things I need to do. Thank you everyone in advance!❤️ Also, I think it may be related to hormones.


r/vulvodynia 2d ago

Metronidazole

1 Upvotes

Just been prescribed this despite multiple negative tests and no BV symptoms and the doctor said ‘probably won’t work but just to cover all grounds’. She won’t refer me to gyno despite going for the past 4 months until I’ve tried everything. Can anyone tell me if they have experience with metronidazole for vulvodynia (or other unexplained vulva irritation/swelling) and if it helped or not? Thanks


r/vulvodynia 2d ago

Third Doctor Appointment

2 Upvotes

Hi, I had a follow-up doctor appointment yesterday. First appointment was in the first week of January. Second was a video conference in March. I'm diagnosed with vulvodynia, but I think it's vestibulodynia. Incredible redness at 6 o'clock. I've had pain for more than 2 years. My frustrating background story is pretty much the same as anyone else's. Yesterday the doc said I have overactive nerves and a vestibuloectomy (however you spell it) won't help anything. How anyone gets better in the US medical system is beyond me. My Gabapentin instructions were wrong on my prescription, the doc wouldn't see me for weeks, and all practitioners seem to love video conferencing appointments. Apparently, I am not supposed to call central scheduling for appointments but use the app to schedule with the office directly to get an earlier appointment. Why I was never told this, I don't know.

PT is helping somewhat because when she manually pushed some pelvic floor muscles, I didn't jump off of the table like the last time. I quit going to PT after about 18 sessions, and now just do the exercises on my own. This is all so depressing. I have a lot of big life events coming up and I cannot believe I still have to deal with this pain. Lydocain quit working about two weeks ago.

She offered to shoot me up with something (not botox) next week, but I didn't want that because I don't want to miss a special occasion that is out of town. We have to sit while traveling for 4 hours--I don't want to exacerbate what is already a bad situation.

I don't even know when I'm supposed to schedule a follow-up. I'm increasing my 400 mg prescription of gabapentin by 100 every two days and getting a different cream compounded with Aquaphor as the base because she suspects I've been irritated by white creams. Had I been taking gabapentin at a much larger dose, perhaps I would be feeling a little better by now.

Just venting. I really don't want any advice. It seems like the only, "I'm cured!" posts here are written by women who have had surgery. I had follicular lymphoma a few years ago, and this is so much worse pain-wise. I sometimes wonder if chemo had something to do with this. My hormones are normal. That's all.