Hi again,

I've been on treatment with Estrogen 0.01% + Clindamycin 2% + Hydrocortisone 10% for presumed Desquamative Inflammatory Vaginitis for a full week.

My vulvovaginal unprovoked pain is greatly improved, leaving only my provoked pain untouched.

She also gave me 4 doses of Diflucan, one for each week of the planned 1 month treatment, to keep away yeast infections.

However a few days in I started having crumbly white discharge and itch and some burning when I pee. I spoke to my gynecologist through messages and she said it's probably yeast, and that we should give it a few more days and stop DIV treatment if it doesn't resolve, while moving to yeast infection treatment orally and locally.

I don't like this idea because I have felt such relief on this treatment, even with the yeast infection symptoms pooping up.

Does anyone know if I can use yeast infection treatment alongside the DIV treatment? Something like boric acid capsules, nystatin ovules - could I put these in vaginally overnight with the compounded cream?

And maybe ask my gyn for more Diflucan doses, dosed more often than once a week? Or oral nystatin?

I would greatly appreciate your ideas!

My doctor doesn't actually have experience treating patients with DIV. I'm theoretically her first.

Its been 7 months of pain from sharp stabbing to dull. Manic itching started 1-2 month ago. I've been to like 7 different doctors. A nerve block didiagnostic for PN didn't work the other day. My quality of life is diminished. Gabapentin 2100mg/day isn't helping and it's also got bad side effects and my boss said it's hurting my work and Ive Maxed sick days.

PFT isn't working/bad doc and they want to do a MRI of spine which is 6 weeks of PT for insurance which is stupid because im at PFT for 3 months.

Im crying, I'm a mess, I'm tired of advocating.

Im terrified and frustrated and idk what to do. I'm just at wits end here.

I've tried so many creams and OTC things. I just... help guys I'm so not okay.

Some stuff I've tried... pn block, PFT, lidocaine, hydrocortisone, benadryl, allergy, ibuprofen, oplelura, gabapentin(cream and oral), ice, heat, vagasil, coconut oil, aquaphor

Next weekend I'm supposed to move 1,000 miles. We're supposed to drive that over the course of two days. But holy shit I don't know if I can make it, sitting aggravates me.

I have a really irritated vulva (labia majora and a little lower, like on my perineum and buttocks) and sitting just irritates the area.

I need help! I need advice!

It was at a level I could've moved and then I was given nystatin ointment because my gyno thought it was a yeast infection and I had a really bad reaction to that... I've kept irritating it by using different creams and ointments and stuff to try and fix the problem. Unfortunately it's going on 2 months and one month from now they can diagnose me with vulvodynia lol.

I have a donut pillow but that doesn't seem to help since some of the pain is on my butt... how do y'all handle long trips?

I am desperate for help, or even to hear that someone else has experienced this too so I don’t feel so alone. I don’t know much about vulvodynia but someone referred me to this group.

The skin around my vaginal opening is extremely sensitive. During sex, it burns intensely, almost like my skin is being overstretched, and I end up with micro-tears. This happens no matter how lubricated I am—I’ve tried numerous types of lubes, but my OBGYN confirmed that lubrication isn’t the issue. This has been going on for about three years now. The tears do heal quickly, usually overnight, but after sex, the burning is so severe that it’s almost unbearable for the next 12 hours. My OBGYN examined me and noticed that even a light touch caused the skin to tear and bleed slightly. She said she’s never encountered anything like this before and referred me to a specialist, but the appointment is still months away.

Another issue I’m dealing with is that the skin on my outer vulva and pubic area is unbearably itchy and burns constantly. The only relief I’ve found is spraying extremely hot water on it in the shower, which temporarily soothes the itch. I scratch until I bleed because it’s so intense. It’s gotten to the point where wearing pants or even underwear is uncomfortable.

I’ve tried everything: shaving, not shaving, waxing, lotions, hydrocortisone cream, Vaseline, Aquaphor, cotton underwear, sensitive detergents, loose underwear, no underwear, wearing dresses—nothing helps. The most baffling part is that there’s no visible irritation: no redness, bumps, or inflammation. The skin looks completely normal. The itching and burning are localized from where my pubic hair begins down about halfway along my outer labia. Again, OBGYN was stumped. She’s never had a patient with this problem and can’t figure out how there is no visible irritation ever.

Please, if anyone has words of advice, I’m desperate and very thankful.

Edit: I’m 24:)

One year ago, I developed pain in the LEFT side of my clitoris. I had adhesions removed there. I had to put a clobetasol cream there for three months (in case it was lichen sclerosus - it wasn't). Three months ago, I developed pain on the RIGHT side of my vestibule. I've been using a testosterone/oestradiol cream since then, but the pain remains.
Any idea as to why I have one-sided pain each time ?
I've been on a drospirenone pill for two years (known to cause hormonally mediated vestibulodynia and atrophy) and my vaginal discharge is white (creamy though, no yeast according to the many tests I've done. Plus I've been treated like 20 times for yeast, even though I probably never had it). My pain is always worse the week before my period, so maybe cytolytic vaginosis ?
The one-sided part doesn't make much sense with hormonally mediated vestibulodynia and cytolytic vaginosis though...

I'm in my mid 40s, non sexually active, and started having burning with redness and inflammation starting a little over two years ago. At first I thought it was yeast infections and treated it as such, but kept getting recurring burning. I went to see a gyn and she noted the redness and inflammation and told me she thought it was contact dermatitis and was probably allergic to something. After a couple more months, I noticed that the burning happened almost exclusively when on my period while I'm spotting (when I have full blood flow, the pain goes away) . Walking or sitting exacerbates the pain and it can become severe and intense. After some time, when I couldn't stand the pain anymore and had tried just about everything, I contacted my doctor again and she told me she thought that this was vulvodynia based on my symptoms.

Anyway, my question is, does anyone else experience burning almost exclusively on their period and only when spotting? I can get mild burning at other times throughout the month, but nothing this severe. If I go for a walk at all while on my period, it exacerbates the pain 5 fold and can worsen it for the entire week. I'm also just at the beginning of perimenopause, which makes me wonder if this is hormonal related.

My gyn did say that there seems to be a link with women who've had bad cramps in the past and vulvodynia. I had bad cramps when I was younger, but once in my 30s, my cramps became mild. I did used to have a heaviness and pressure in my vulva when having intense cramps, though.

The only thing that I find consistently relieving is an aloe based feminine moisturizer, but I think it's really just the cooling effect that's helping. My doctor told me to try postpartum care, like using cold compresses, and that helps too, but again, never gets rid of it entirely when it's happening.

My doctor hasn't tested my hormone levels and doesn't seem concerned to do so based on my overall health. Now that I'm in my mid-40s, I'm wondering if this is just a new "hey welcome to middle age" symptom.

Has anyone experienced something similar? With the pain only happening while spotting?

Does anyone here take strong pain medication like Norco or anything for pain related to penetration? It’s literally impossible for me to have PIV and was just wondering what you all take.

I was prescribed Gabapentin but it doesn’t really help the pain part, just takes care of the nerve issues and I don’t like the side effects.

I am going back to a pelvic floor specialist because my insurance is better now.

Hi I am 26 F.So I am in a lot of pain right now as I am writing it.It started around March that I started getting burning sensation in my vulvar region. And it used to last for hours . I couldn't function properly during that time . I went to a doctor and they did a lot of tests but nothing came back.I did the treatment for UTI as well as they gave the FAS-3 kit.Still nothing improved and I went to 2 other doctors after this . No STI,STDs,UTI etc .But around 2 weeks later these went away on their own.Now around August this has come back .I went to a doctor and I came positive for yeast infection so did the course . There were some better days after the start of treatment but still there were days when the burning again started to get really bad although the frequency was less. I have switched cities in between and where I live now they don't even do the swab test before diagnosing for yeast infection .The first gynae I went to here said it's yeast even though I don't really have any evident smell or discharge or anything visible I feel and she said that it takes 2 months for the medicines to work for yeast infection .Then again I took her meds for more than one week ,didn't see any improvement and also I have checked many places that the yeast infection meds do work in a week so I again switched the gynae . The second one said there is nothing just a sore on my vulva that's why it burns during and after peeing .She just gave me soframycine and b complex pills .After 2 days I noticed intense itching in my vagina which was a new symptom .The burning wasn't happening again during this time and anyway it used to happen on and off so I wasn't even sure if it's actually gone or not.I consulted a third doctor after this and she again told be that it's yeast as she said my vagina looks red . She also said it's UTI so I started taking medicine for both .After the course I went to her and said I still feel burning and itching sometimes and she just told me then it's not relates to gynae and I should go to a dermat as she doesn't think anythings wrong with me .Now for the last 2 days since my periods have started I am again having intense burning down there usually triggered when I go to pee. It's really bad and I have no clue what to do . I have an academic exam which will basically decide my future college for admission in coming week and I am scared this will happen during it and completely ruin it .Is there any way to atleast get temporary relief ?I am trying pain meds but no effect whatsoever.Again I have PCOD so I had to take meds to induce the period and I have gained around 10 kgs in the last 10 months .I know I need to lose weight and I will .I am not sure whether this is relevant or not but I have started having this ever since I have gained weight not sure whether it's related or not . Please help me .The country I live in I don't think they have any vulvodynia experts or any knowledge about it as well. They don't even have proper swab tests for yeast infection so awareness about vulvodynia seems far fetched . I am not even sure this is vulvodynia but reading other posts and literally having nowhere to go I feel it might be this .Please help I am literally crying right now.

multiple brush fires here in New York and my vulvar itching is flaring like crazy. It also flares with pollen and dust. I have allergies to those so we were thinking allergy shots would help. But idk if a reaction to smoke is an “allergy” or just prone to irritation or smth? I have some overlapping MCAS symptoms. Anyone have this? Suggestions? I already have an air purifier.

What would cause what appears to be blisters or ulcers just outside the vaginal opening?

What are the symptoms for a pelvic floor disorder? I have very little discharge I think that’s related to hormones but my left side near the entrance burns, and feels irritated And when I push on it hurts. Anyone have the same symptom?

I've lurked in this community for the past 2 years when my symptoms started - red, inflamed vulva with a burning sensation, testing negative to yeast, STI, UTI, etc. I've been to a vulva specialist, dermatologist, even did an allergy test. Nothing seemed to help.... Until a few days ago when I saw a urogynocolgist. I saw someone recommend this type of specialist somewhere on this sub.

She diagnosed my issue as tight perineal muscles mixed with trauma from sexual assault (years ago). I think it was triggered after taking antibiotics and fluconozole for a UTI and subsequent yeast infection.

She prescribed daily perineal stretching (some yoga poses that stretch your butt, hips, and inner thighs), estrogen cream every other day to help relax the muscles, and a numbing cream only for the 6 o'clock area during PIV sex.

She said the stretching, cream, and even some sex will help relax my muscles and train my body to not clench.

After 2 days of stretching this is the first day I've woken up without the burning sensation 😭😭😭😭

If your story sounds similar, especially if it feels more painful before your period, this it be worth asking your doctor about your perineal muscles!

Am I the only one who is quite sure that their vulvodynia (one-sided) is caused by a very weak left leg (thigh) and a flat foot?

• Have had vaginismus my whole life (inserting was always really painful)
• Vulvodynia started more than 10 years ago, full-time pain but usually only on the left side
• The usual pelvic floor therapy did not help me (granted I'm not in the US and in my country this condition seems virtually unknown, still I had lots of internal and external treatments and stretches; pudendal nerve blocks didn't help and every kind of medication I tried had no effect; pudendal neuromodulator (implanted) helped me to have sex at least for some years, but doesn't seem to be effective anymore
• Suicidal almost daily, feel really guilty towards long-time partner, hate myself etc.

Sooo... I got myself an ADHD diagnosis (already diagnosed with autism in childhood) in the hope that stimulants might help increase the pain threshold. They didn't but at least I was able to see lots of connections.

Since most problems in my body seem to be only in the left half, it's quite plausible there's a connection to my amblyopia (left eye has decreased vision which unconsciously makes my brain/body to want to do everything using right arm, right hand, right leg etc.).

At gait training I learned how to walk properly (I used to have a very stiff gait, I also suspect dyspraxia).
Even though this helped a lot initially, I still noticed my left leg was doing weird stuff. At first I thought the left (flat) foot was the only problem so I did lots of exercises until it got better. Still my left leg felt really UNSTABLE, so that's why I used to turn in inwards so much I guess?
I had always noticed some weird problems, like that the left leg started shaking and twitching immediately as soon as I lay on my back with knees bent; or that I had trouble walking downhill, trouble sitting on chairs etc.

So then physio found out (after many sessions and questions from me) my left leg is REALLY weak, like some muscles seem to be underdeveloped. This was also confirmed by some short tests. Again this is plausible since I only use my right arm for everything which causes me to never put any weight on my left leg. Other muscles have to compensate for this.

So now I know what's causing my left-sided vulvodynia (and also left-sided leg pain, foot pain, knee pain and other stuff I've had my whole life).

The weird thing is, the problem for me seems to be specifically in the thighs and I don't mean the adductors (even though that seems to be quite common?) or hamstrings? When I put forward my left leg and just slightly bend it, it totally starts shaking, like visibly shaking a lot.

I googled a lot because I feel so alone in this...but nobody seems to have this problem? Vulvodynia/pudendal neuralgia caused by really weak/unstable thigs?

Of course I'm doing everything now to increase stability in the left leg. But building muscle takes time :/ I already lost so much of my life to this. Doing exercises wrong will sometimes cause inflammation in the psoas which then again triggers lots of pudendal pain.

So TLDR does anyone else have this problem with a really weak/unstable left (or non-dominant) leg, abnormal gait, flat floot etc.? Maybe even connected to amblyopia/weak left eye?

Or am I totally wrong and it's _actually_ the glutes that are weak? Would this fit my symptoms? Basically all practitioners I ever went to couldn't tell me exactly which muscles are affected :/ I'm in Europe, not in the US.

Edit: Also read about quad dominance. But it doesn't seem quite fit (more of the opposite?) since my hamstrings seem to be the muscles that are constantly doing too much when doing exercises. So I don't quite get it... Also I don't have overstretched hamstrings? I cannot even bend my leg straight lying on my back.

Edit II: Do I have hamstring dominance? Would that fit?

On 13th of September I used a depilation cream (CALCIUM CARBONATE, CALCIUM THIOGLYCOLATE, CALCIUM HYDROXIDE, CALCIUM OXIDE, ZEOLITE, Silica). I used it before and nothing happened. But from this day until now my clitoris has less sensitivity, I have numbness and muted orgasm. I was to 8 doctors and everyone said that vulva is little red with some little ragada but clitoris is normal by look. My pleasure feeling on clitoris is worse, my orgasm also. If I should compare maybee it is a little but very little better that on 13tg of September and the first 2 week. Can anyone give me some advice? Is this permanent? What to do and what happened? I have suggestion for testosterone cream and after o shot. I didn't do anything I am waiting. Please any advice

Hi guys, I’ve been so miserable lately because I started losing hope more and more. I’ve seen so many doctors & have been diagnosed with Lichen Planus/Sclerosus & provoked vulvodynia. I’ve tried so many meds - Amythriptilin (50mg), Pregabalin (150mg), Lidocaine cream, Amythriptilin-Ketamine cream, Estrogen Cream, changing birth control, physical therapy sessions, cannabiods, ibuprofen, novalgin, etc. Nothing helps. It’s mostly around my vestibulum, but it’s also burning in the inside and during peeing. No UTI, infections, etc. Some doctors said they can’t do anything for me and there’s now way Ill ever be able to have pain free sex again. I need to use cortisone cream (clobetasol) regularly because of my Lichen. I don’t even know what I’m hoping for typing all this, I just feel like giving up and I just feel tired and sad when thinking about this.

Back again with another update!

I had my first PT appointment yesterday after taking a break following my vestibulectomy on 9/20. My PT did a basic full-body evaluation and then took a closer look at my hips, pelvis, and upper legs (think hamstrings and quads). She then did a visual exam of my vulva and very gently tested the outermost muscles. She also watched my muscles move for kegels and reverse kegels, and bearing down.

Based on her exam, she says that I am healing very well! She tested the tissue mobilization around my surgical site and noted that my skin moves well in all directions (I guess if you have a lot of scarring then that will prevent your skin from stretching and moving?). I do have a decent amount of muscle soreness around the lower portion of where my vestibule used to be, which we think could be a guarding response from everything that has happened down there recently. I'm able to do all the things she asked me to (kegel and reverse kegel plus bearing down), but I seem to have less strength than I did pre-surgery, which is not at all unexpected.

I have some stretches for homework, and the plan is to focus on stretching for another week before my PT does a full internal exam. She seems very optimistic about my ability to progress now that my vestibule is taken care of!

Hello all, I am dealing with chronic pain and mental anguish depression anxiety grief loss of self and so much trauma. Is there a resource that you know of where I can find a good therapist equipped to deal with these issues? Please and thank you.

I’ve read that vaginismus doesn’t cause itching. I have this but also have an overactive pelvic floor. So would these cause vaginal itching? I have no infections. All clear for everything.

My friend doesn’t have a super super complex case but needs a doctor in New York who is in network with at least some insurance and can prescribe an estrogen or estrogen testosterone cream as needed.

My doctor isn’t accepting new patients. Anyone have recommendations?

I know there used to be that online thing Odela health that did it but does anyone know if they do that anymore?

hey, I wanted to ask if you have any tips for flying? Any pillows you can recommend or something else.

I'm flying to Scotland in November and I'm worried that it will ruin my whole trip. I've got my pain pretty well under control at the moment, sometimes better, sometimes worse. But if I drive for more than 40 minutes I'm in so much pain for the next week I can then do as much as I want: physical exercises, heat or cold, nothing helps then anymore I just have to wait the pain out.

I just don't want the flight to ruin my whole trip and have to be in a lot of pain every day. The flight will be around 3 hours.

My fiancée (21F) was diagnosed with vulvodynia in May. I was her first with sex and since we started dating over two years ago, pain has always been a major problem. In May, her gyno gave her lidocaine 4% cream to put around her vagina 30 minutes before sex. This worked really well at the beginning, but now months later, the cream doesn't have the same effectiveness and we're back to the amount of pain that she was in before we started using the lidocaine.

Is there anything that has worked effectively for anyone? Does anyone know if you can build up a lidocaine tolerance? Or tolerance to any other cream/method? We're looking to try something new but we don't know what's out there (we also don't want to go back to the gyno because that'll cost $1000).

Im on 2100 mg a day and was told to taper 300mg every 3 days. What may I expect for symptoms and do you have coping mechanisms?

Hi all,

I have been diagnosed with vestibulodynia following endometriosis surgery and 3 rounds of antibiotics for UTI. It just popped up out of nowhere one day and hasn’t budged since. I’ve been reading a lot about vestibulectomy surgery in this sub and am wondering if it may be a good idea for me. I have a couple questions:

1. Is it possible for vestibulodynia to just show up for seemingly no reason?
2. Since I have only been dealing with this for a few months should I try waiting to see if it goes away on its own or other treatments first? If so, what treatments would you recommend? I have already tried PT and it didn’t work.
3. has anyone had experience with theirs going away on its own or is it pretty permanent once it starts?

I thought I would get on here and describe my particular presenting symptoms and see if anyone has any insights. I first noticed this condition about the 3rd or 4th time I had sex. The first few times - no pain at all. However, after reflecting on my life before I was sexually active, I belive it has been there since at least puberty because I can recall struggling with tampons for example but it was brushed off as me just not being mentallyready for penetration. Anyway, I've been sexually active from almost 3 years now since I have been married. Within that time, there have been some periods where I've had no pain. Few and far between, but there. When there is pain, it varies not only in degree but in where it is on my vulva. It is usually the vestibule where it is the worst and sometimes may only be there, but other times there is a burning / rawness over my whole vulva. Most of the time, I am able to still have sex in spite of the pain if I relax, on some occasions I can't even be touched. Along with that, there seems to nearly always be a difference in the texture of the skin wherever the pain is appearing at that time. It feels rough and even almost bumpy, and can appear red at times. I have had a gynecologist completely brush this off when pointing it out but I think it's really significant in figuring out what is causing this. The shift in symptoms can be abrupt. I can go a week with little to no pain and wake up the next day and be bad off. I thought that estrogen cream was really helping me, but I'm beginning to belive that I was just in a low pain period that had nothing to do with the cream because the pain is back. I feel so burdened by this condition, and most of all confused because of how odd the presentation of it seems to be, even compared to other people with the same condition. Any insight anyone has would be greatly appreciated. This is so hard for me, as I know it is all of you. My prayers are with everyone in this group.

Back in May 2024 after a particularly rough month of COVID/GI infection I noticed a peach pit sized lump under the skin on the right side of my vulva, just a smidge higher than my clitoris. its squishy, very moveable and sometimes has a dull thrombosis type pain if im about to get my period. I book an immediate appt with my gyno and she checked and assumed they were swollen lymph nodes and prescribed me some antibiotics and epsom baths. Fast forward that didn't work.

So I go to my PCP and they order a transvag sonogram imaging which lo and behold-- DID NOT IMAGE MY LABIAL/VULVAR AREA. (I did find out I had PCOS through this so not too mad)

Go to the gyno again for a second opinion-- this second gyno is unsure of what the palpable lump is and brings in the most senior doctor at the practice... who says "You're fine. there's nothing wrong with you. no further action needed". and would not elaborate further. I asked what they thought it was composed of and they said I could go to a surgeon who could look into the removal and see what its made out of but that the risks outweighed the pros if it wasn't bothering me. In my chart they wrote "Palpable vulvar lump" and called it a day.

Months later and Im still so anxious and scared they never confirmed what is was. A lipoma?? A cyst?? Cancer? Do I go again? Do I let it rest? I hate doctors.

Does anyone else have increased urinary urgency/frequency when bending or sitting?

Hey everyone, I’m trying to figure out whethers my symptoms are more likely due to nerve damage or inflammation. I’ve been experiencing discomfort on my left side more external, close to my inner labia, I felt great yesterday, today it came back, my doctor gave me estradiol cream, started using it externally on Monday, my doctor doesn’t think it’s related nerve damage. I’m 40 years old, birth 3 kids, never had a UTI, Yeast infection BV, or STI. Hormones are in range but I do have more dryness down there. Started probiotics about a month ago seems to help a little bit. I’m wondering if anyone with experience can help clarify how to distinguish between the two. What do you think?

Hi friends I got an x ray. Waiting on pelvic mri. Got the pudendal nerve block yesterday and didn't see any results for my vulvodynia- mostly clit sharp pain/discomfort and then general vulva, itching, tightness, hypertonic pelvic floor, the works.

They think it could be my lumbar but need the mri first and I need to start PT for my lumbar for 6 weeks before insurance will let me do an mri of my lumbar...

which sucks because I've been doing months of PT for pelvis.

Gabapentin isn't working and I'm on 2100mg/day.

So... anyone find that it was related to their back...? Advice?

After months of pelvic floor PT, cymbalta and EMDR therapy, I was able to have sex with my boyfriend last Sunday.

Given the current circumstances in America, what do I use for birth control besides condoms?

I can't take anything hormonal like many of you, and I had a copper IUD and I expelled it in less than a month

Cervical cancer is on the table (2022 LSIL-CIN1) Encompassing HPV.