r/vulvodynia

As many of you know, there's currently no dedicated treatment developed specifically for vulvodynia. Not a single one. It's a really neglected area within women's health research.

Which is why it's genuinely exciting that there's an ongoing study for a new medication called Pudafensine in the UK. It works by increasing dopamine in the brain, which helps reduce pain - specifically allodynia (pain from touch that would otherwise be neutral).

I host The World's Tightest Community podcast (previously Baubo The Podcast) and had the Chief Scientific Officer on to talk about the study and how you can get involved. I've been so moved by the response so far and hoping it can reach even more people.

Let me know if you have any questions!!

Link to the study page in the comments.

I read several stories on this sub regarding burning located in vagina after peeing, desperately looking for help.

I could relate to all tests results mentioned: No problems in the urinary system (perfect pee results, perfect ultrasound, perfect urethra swab). No vaginal infections. Tense pelvis muscles, but physiotherapy didn’t help at all...

I could relate to all advice given in the comments - drinking a lot, peeing in the morning under running warm water. I think that advice saved my life as it helped the morning torture a bit but overall I lived in horrible pain for 12 years.

One thing that did show in vaginal swabs: a bacteria that was overgrown but DOZENS of doctors I saw about my burning said it’s not something you treat - Gardnerella Vaginalis (some labs won’t even show it in a result, treating it like a part of the normal flora).

Only my new dermatologist last year got interested by this and gave me a metronidazole cream to treat the burning area directly (metronidazole kills gardnerella) - it helped! But literally the day after I stopped using it, the burn was back and you cannot use that creme forever.

FINALLY 6 months ago I took Metronidazole 3 times a day for 2 weeks for something entirely else - and… I’ve been burn-free ever since.

This has been such a relief I happy cry a little every morning when I pee pain-free.

I know that burn might have LOTS of different reasons - but maybe my story helps someone find the right treatment for them. Fingers crossed.

30F. I have always had painful sex. Suspected nerve ending issue, the painful spots are at the south of the entrance. So, during penetration, it feels painful at the entrance and basically like nothing/borderline numb any deeper in. I believe it explains any hint of libido I have instantly dies as soon as I actually have sex/get penetrated.

I am scared I'm going to ruin several relationships at once. I currently have a very loving FWB, my best sex yet, even though it's still overall disappointing and something I always want to be over; I stopped wanting it from the first time we had sex after seeing that no matter how much foreplay we did, it led to the same painful penetration like in my previous long term relationships. I am ashamed to admit that I am fantasising about others lately, but I know that I would be leaving him to experience the same disappointment - just with a different man. Just like what happened to all relationships where I was the breakup initiator.

In total, I have had sex with 7 men. All very different sizes and personalities. Some 1+ year long, some hookups. I feel empty, like I can't even enjoy a hedonistic life when I try - I don't want short term flings, I just get tricked by my body in the "crush" stage and then it all just dies at penetration. I have been to gynecologists, they are overall useless (one even told me to drink wine, I wish I was joking), and it's no longer worth the stress.

I think I am extremely sexually frustrated, yet I can't actually feel a response, my body experiences zero sensation. I am just thinking about sex constantly, in my head, watching myself enjoy something I never had enjoyed to begin with, and feeling nothing, just empty and depressed. It's getting so bad, worse and worse every year. I feel like I can't handle it, it's making living difficult.

I feel tortured by my own brain. I can't focus on anything else. Why don't I feel anything when I'm essentially obsessing over sex at this point? I don't understand. It's all so unfair.

Okay y’all I’m 27 years old, and I have NEVER been able to insert anything, the first time I used a tampon I passed out from the pain….so anyway. When I was around 20 I started pelvic PT and trigger point injections, this went on for YEARS with no relief. I’ve had relationships end, I really truly thought I would never be able to experience sex, I wasn’t even hoping for pleasurable sex, just PIV with moderate pain was all I was hoping for. Last year I finally got up the courage to get vaginal Botox, and I had such high hopes…….and it didn’t do shit. I was totally heartbroken. Fast forward to a year later, I’m in a new relationship and I’m like okay, let’s give Botox another try. So I got a second round of injections, and the started using my Milli dilator every day (which is a dilator that expands inside you and vibrates so it helps IMMENSELY with entry pain) and about 3 weeks after the Botox I was able to have PIV for the first time, I still had some entry pain, but a few minutes in there was no pain at all!!!!! And it felt GOOD!!!!! Now I’m able to have PIV multiple times a week and really truly enjoy it. I had lost all hope of ever getting better, so I thought I’d throw my story in here to show you all of you’re feeling low that if it can happen for me it can happen for you. Now I dilate on days I don’t see my boyfriend, And use a gabapentin cream at night to help with the entry pain/ burning. This has been a life long struggle for me and I can’t believe I can finally say I’m healed.

I’am on gabapentin for 3 months now I started with 300mg and increased it to 1700 mg now and i also take 12mg of amitriptyline and oral baclofen.

Should I keep increasing the dosage of gabapentin until i have no pain at all?

Or should i switch to another medication?

I have provoked pain all the time that is triggered by the slightest touch and clothes like pants and tight panties.

For this provoked pain i feel like gabapentin has helped making it tolerable.

BUT i have unprovoked pain that gabapentin did not help u can call it as a flare this pain is always present a week before my period it is sharp and very intense it feels like the vestibule is being cut open it stings and burns so much.

Hii, i'm 23 (from the Netherlands) and i've been struggling with Vulvodynia for about 4 to 5 year now. When it all first started the doctors kept diagnosing me with yeast infections. Kept getting treatments for that and for a short period they worked. Until the pain became so intense I couldn't walk, i couldn't sit and i couldn't have sex anymore. It was burning, itching and i had alot of fissures. I was so sick of it and went and did my own research, until i found the term 'Vulvodynia'. I went back to the doctors with that information and she thought the same thing. I went to a pelvic floor specialist, and got hormonal creme. At first i thought it worked, but i didn't.

Now 4 to 5 years later i'm still dealing with it. I first went to see a Gynaecologist about 4 years ago (which she told me to just not have sex anymore and send me back home). My doctors wouldn't really know what to do anymore with it either, and only gave me 'Vaseline Parafine' and 'Cetomacrogol' to help it keep moist.

Last year i begged my doctor to send me to a different Gynaecologist in a different hospital. I got an appointment there, and based on my story she told me she couldn't really do anything beside give a different hormonal creme to try (It was a very strong hormonal creme which made things worse so i stopped shortly after it) and send me to a special hospital with a vulva expert and a dermatologist.

Full of hope i went to the specialists thinking that i was finally getting some real help. And ofcourse at that moment my vagina looked completely fine. They looked at it and ofcourse said they didn't really see anything. No lichen sclerosus or anything. (which i'm still not sure about that i don't have it, because of the fissures that continue to come back and how many i had)

I told them that i had most of my big flare ups around my period (like 10 to 7 days before) and that it became a pattern. They told me that maybe i can try using birth control again and that it could help it. (I stopped taking birth control about 5 years ago i think because i was sick of the hormones, since then have been hormone free). Because they told me that birth control could help i reconsidered starting again. I have now been taking them again for about 2,5 months ago (with no stop weeks). I know that the body needs time to get used to the birth control again. But i don't know if it will really help.

At this point i'm so sick of it. I feel like nobody knows how to help me, or is even listening to me. I do have a boyfriend of 6 years and he is super supportive in it all. But ofcourse because of it all i can't have sex with him, which is really hard me mostly. (My BF accepts it tho, he knows how bad i'm struggling and keeps telling me that sex is not everything. Which truly bless him on how supportive he is)

It does really really impact my mental health at this point. The burning pain and itching continues. ( some days are better then others). The fissures keep returning and sex is still impossible. Everyday I'm still struggling with it. It's truly been taking over my life for so long now.

(I'm seeing a sexologist and I'm on a waiting list for a different pelvic floor therapist. But i don't know if it's gonna help me)

Sorry if my story is all over the place. English is not my native language. But i just wanted to share my story to hopefully not feel so alone after all those years. And maybe get some advice on this.

I haven’t had alcohol in over four months but I’m seriously considering being an alcoholic to deal with the pain if it’ll help , I’m over this :( trying marijuana and ya it calms me and makes me not as annoyed with it but I’d love to numb my body 😓

Hi everyone,

I am posting this because I think I might of somehow caused some contact dermatitis with the lube I was using to do my pelvic floor exersizes. I was doing desensitization.

What are the best lubes in your experience that won't throw off pH? This condition is already so bad, I don't need more issues lol

Hi, I finally got the surgery and have been having a pretty smooth recovery so far (not in a lot of pain, can go up and down stairs, have been making my own meals at just 5 days post op) but I’m curious about the swelling. Since the operation I’ve been so swollen that I cant even see stitches, vaginal opening, etc… literally all just looks like a wad of purple bubble gum lmao

Is normal to have to much swelling that you can’t see the stitches and everything? The only thing I’m really worried about is moisture/ bacteria getting trapped and it’s too painful to separate the swollen skin to try and dry everything thoroughly

Has anyone tried lidocaine ointment? I have to get relief from this burn, my mental health is declining rapidly, I have suicide ideation almost everyday..( yes I’m in counseling twice a week and see a psychiatrist )I have had burning for 15 months now. Everyday non stop. Sometimes bearable then so intense I can’t think straight or function. I had to quit my job, quit my hobbies. I’ve changed everything followed every doctors suggestions. Im terrified to try lidocaine because the tissue is severely inflamed. I have sent in a message to the dr for her suggestions, but I want to hear from other woman who have tried the product!! Has anyone used any type of lidocaine that was gentle on skin? I’m allergic to fragrance and any cream based medication seemed to always make things worse. Please let me know what worked for you. I have pain, inflammation on the labia minora and the entrance of the vagina!

Had and treated Ureaplasma 6 months ago. Since then I have had pain with sex, after bowel movements etc. burning redness urinary symptoms. I’ve tested negative several several times for Ureaplasma since.

My dr thinks this a nerve issue now and prescribe amitriptyline to take every night orally. Has anyone had a similar story with success?

Hello … been having burning in my vagina for over 2-3 years. Have gone to numerous drs, gynecologists and urologist. Have done many blood test and none can’t seem to know why I’m burning in my vagina. Pls I’m begging you, if u have or had experienced this symptom , pls tell me what it is ? Why I’m burning. What helped you. I’m so depressed not sure what to do next.

Hi everyone, I’m nearing the end of my PT regimen and I’m curious as to what comes after. So far, it’s been a lot of help. My pt thinks the pain is coming from a prior injury and over tightness in hips/legs and poor posture. I’ve been doing PT once a week for about 3 months so far. I have noticed a difference, though I sometimes struggle to do my routine consistently.

Flare ups have been minimal but they still happen. I weaned off topical gabapentin about a month ago. I’m just curious as to what everyone did after PT? I’m planning to continue my routine after my last session in June. Is it just pain management after this?

Thanks!

Hey ! So I randomly get tears on my clitoris right by the hood and it hurts so much, it’s like a 3mm area that is fully open, like the skin has been eaten or something, it’s not just a cut . wtf is that ?? It makes the pain so much worse ! Mind you there is minimal to no friction ! No touching no nothing because I’ve already been in pain lately so I’m extra careful

Does anyone else with adhesions find that they get sore after heavy exercise? Walking is fine, lifting is fine, but it gets sore for a while after a run. I use a barrier cream before I run but maybe I need more? Has anyone else had this?

I’m experiencing increased fatigue on 25mg Amitriptyline at night. Has anyone had less side effects particularly with fatigue with Nortriptyline?

I've never been diagnosed with anything because the doctors just shrug it off but ive had a painful vagina my entire life, random sharp spikes of pain and everything when nothing at all is happening. I have tried pelvic floor pt, dilation therapy, lube, birth control, only gently washing with water, practically everything under the sun to fix it and there has been little to no progress. Any progress that is made resets immediately after and I'm back where I started. I've been tested for sti's and everything was negative. I don't have a partner luckily because I have limited interest in romance but I still want to be able to have sex whenever I truly want to. I also have only had one sexual experience before and it was against my will when I was a teenager, but this pain was with tampons way before that happened. I was 12 years old when I first noticed it with tampons, but I've had the random sharp pains ever since I first became concious as a toddler and just shrugged it off.

I have another appointment with a different gynecologist coming up and maybe I'll finally get an answer and something that will actually help me instead of telling me to try physical therapy or birth control over and over again. What should I tell my new gyno when I attend my appointment to help aid a diagnosis or answer?

Edit: Nothing looks inflamed or unusual, but since this has been lifelong I wouldn't know what "normal" looks like for me.

1.itch for 5 years..now gone(rarely sometimes) 2.now sorness developing (no visible changes) 3.small fissures in clitoris(4 months) 4.raised area in side lips 5.having a tiny ulcer on one spot 6.pain from lower stomach to right leg ,groin completly 7.pain in vulva 10 gyno visits.. Diagnosed nothing😔 Its terrible what to do? Is it a cancer.. Married for an year Please help

So today is day 2 of being on cymbalta duloxetine and omg. I’m so nauseous. The first night I was EXTREMELY close to throwing up I was up almost all night because of it and I still feel so sick. I have to watch what I eat and how much cause I get so sick. I hope this goes away within a week or so because this is not fun

I wanted to share something I recently learned after dealing with ongoing irritation that wasn’t infection-related (no odor, no discharge, normal tests, etc.). This took me months to figure out and it’s worth the quick read.

A lot of us reach for vulva balms in jars because it’s what Amazon suggests to the masses. But there’s a downside that doesn’t get talked about enough: contamination risk.

Every time you dip your fingers into an open jar, a few things happen:

* You’re introducing bacteria from your hands (even if they look clean)

* You’re exposing the product to air, which can degrade ingredients over time

* You’re potentially transferring moisture into the jar, which can create a better environment for microbial growth

And unlike body lotion or face cream, this is going on very sensitive skin that’s already prone to irritation.

What surprised me is that this kind of repeated contamination can actually make irritation worse, especially if you’re already dealing with dryness, friction sensitivity, or hormonal changes. It becomes this cycle where you’re trying to soothe the area… but possibly reintroducing irritants every time you use the product.

I asked my OB/GYN about it, and she said this is exactly why many doctors now prefer airless pump packaging for intimate care products over the jars:

* No repeated finger contact

* Minimal air exposure

* More stable formulation over time

* Lower risk of contamination

It’s one of those small details that doesn’t get much attention but makes a big difference when you’re talking about delicate skin.

TLDR – don’t use your mothers vulva balm jar!