After 13 years of complaining of UTIs, visibly swollen vestibule, dryness, burning, pain on penetration making tampons/speculum etc an impossibility etc Ive recently been prescribed estriol cream. I have Ehlers Danlos syndrome and was on the combined hormonal birth for 15 years.

The only problem is I can’t get the applicator in. The hard edges of the plastic scrape me, the small surface area is paradoxically harder to get in that something larger (feels stabby), and due to a combination of prolapse and vaginismus I’m just so right I literally can’t force it in.

Is anyone aware of some kind of rounded tip that can be screwed on to the end or a silicone test of some kind to make it less painful to insert? I can’t even get it 1/4 of the away in

Has anyone had damaged skin from over and aggressive wiping using baby wipes? I've obviously stopped using baby wipes and wiping the way I was, but how did you heal? My clitoris and the skin around it is especially affected and sensitive.

I mostly failed the VAT test. I have congenital neuroproliferative vestibuldynia. I had my first vestibulectomy in 2023 and it was successful. I injuried my hips a few months ago, and the tissue that was left behind from my 1st vestibulectomy started hurting 24/7. My hip dr thinks that I have bilateral labrum tears and need to get them fixed and that will help, but need to do a PAO first, due to dysplasia. I can’t take the pelvic vestibule pain anymore. I want to get that part removed, because my first vestibulectomy was so successful. But I failed the VAT testing this time, it didn’t stop my pain. But I was told if I got another vestibulectomy with a buccal graft, there was little to no chance I would make things worse and to still consider it. They said worse case it won’t help but will rule out the vestibule as a cause. Is this true? My pain is only in the part of the vestibule that we didn’t remove and my first vestibulectomy was successful but had more positive VAT testing

I had a biopsy done on my perineum (6 o'clock) about 8 weeks ago. (Results were negative for any skin conditions.) The doctor who performed it (a specialist in gynecological/pelvic pain) checked it last week and said that it looked healed up.

However, there is still a lot of tenderness when the spot is touched/stretched... such as during sex, when I use my dilators, with a finger, etc. The pain is very surface level. My vagina is fine... just the area where the scar is has provoked pain. When I have sex, the pain is just at the entry, so I can still have pretty pleasurable sex, but it is sore after.

Has anybody had experience with this? Tips? Do I just need to wait it out longer for the area to heal? Is there a possibility the scar will ALWAYS hurt? Should I avoid sex and dilators until it totally feels better?

My CNV was under control until I tore both of my labrums. I had 1 vestibulectomy years ago which helped, but now the remaining tissue hurts 24/7. I had a hip surgery a month ago but it didn’t fix the labrum’s and I’m still in so much pain. Dr said I need to wait 7 or so months to operate on that hip again so I’m considering getting the rest of vestibule removed In meantime because literally nothing else is helping. I’ve tried so many different meds and PT . Has anyone else been in a similar position and had a vestibulectomy and it worked? Despite the pain source being the hips (irritating the vestibule)

Based on writer & executive producer Bonnie Gross’s true story, Lady Parts is a dramedy feature film where a young woman’s sex life becomes a family affair when she has to undergo a vulvar vestibulectomy. Her loving, but overbearing parents help her through recovery (despite her cringing) and learn that saying “vagina” loud and proud is the first step to advocating for herself in all aspects of her life.

What is best to put on vulvar tear in order for it to heal?

Hi All,

Have any of you heard of the "Buff Muff Method" pelvic floor exercises by Kim Vopni? And if you have, did her method give you any relief? Thanks so much!

Not looking for advice, just for empathy and for someone to tell me that there is hope. I’m in a dark, terrifying place of despair… and could use some encouraging words 😢

I’m 29 and cannot get access to a vestibulectomy in the US anytime soon. I don’t have enough money and cannot even afford rent (I’m Canadian), I’m working as much as I can. I have no family at all, no close friends and no partner 💔

Is there any hope of finding a supportive partner? I want to get married one day and don’t want to spend the rest of my life alone with only platonic friends

I have my courtesy call with Dr. Goldstein next week. I'm 29 and most likely have congenital neuroproliferative vestibulodynia. I don't even have the money to get the surgery but am desperate to get his opinion.

How is his bedside manner in person and over the phone? I'm pretty nervous because I've been mistreated by so many doctors and have high hopes with him.

I have my vestibulectomy next month and I am expecting to need PT once I have healed from years of learned pain/ tight muscles. I am looking for a PT reccomendation in and around Oxfordshire and Buckinghamshire (UK). Any NW/ central London-based reccomendations would also be appreciated. I have had PFPT in Warwickshire before which was good but it's a little too far to travel - thanks in advance!

hi, i’ve been dealing with my pain for 3 years almost. it’s affected every aspect of my life. i’ve been to countless doctors and tried countless treatments. nothing has worked, right now i have a vulvar specialist who has me on baclofen suppositories and an gabapentin-lidocaine compounded cream. it’s only been about a month that i’ve started the regimen and she’s said that it could take about 3 before i feel any difference but im scared it’s not going to change anything. i just wanna know if i should start thinking towards that being my only option.

Provoked vestubulodynia sufferer here, just got a pack of these and tried half a capsule last night just to see if I left it in place overnight if I would feel less provoked pain in the morning. I definitely felt a reduction in the sharp intensity of the pain when i did the Q tip test on myself! Anyone got experience of using these? They're not exactly cheap but cheaper than a session of physiotherapy...I'm wondering if it's possibly safe to use this every night, Or does anyone know if there's any alternative brands etc ? Very very curious....

If anyone can offer me ANY insight, advice, or next steps to take I would greatly appreciate it. I’m extremely stressed and discouraged over this and it has put my life on a complete standstill and I just can’t afford to not work and go to uni. The history- i am a 21 year old woman living in France currently. I have struggled with vulvodynia since I was seven and got diagnosed and prescribed amytriptaline at 14 which put me into general remission for seven years. At the age of 20 (ten months ago) I became sexually active with my boyfriend for the first time. It started with what I thought was a very bad UTI that wouldn’t go away and got worse after every time I had sex, but also characterized itself as localized vulvular pain. The bladder and urethral pain I was and am in is tremendous, my doctors were stumped. My urine tests were coming back Infection free and only high in leukocytes (white blood cells) I went to see a gynecologist and after testing for and treating BV and ureaplasma (the only two possible other explanations) it was concluded I have provoked and unprovoked vestibulodynia and severe pelvic floor dysfunction as well. This was supposed to explain my severe bladder and urethral pain. I am on my third month of physical therapy and I am seeing improvement in my vestibulodynia symptoms and some of my pelvic floor dysfunction issues. I however have been hospitalized twice for kidney stones in the past three months as well. (I’d like to note there is nothing I eat in excess to cause these stones. I have a healthy and balanced diet). I still present with severe bladder and urethral pain (worse than normal) about once every two to four weeks but with no positive infection test, just high leukocytes. Fosfomycin (a single dose drinkable antibiotic used to treat UTI) makes me feel miles better and gets me back to normal. I’d like to clarify my ‘normal’ is still daily pain and trouble with peeing, and urethral pain after I pee, but not as acute and severe it can be. I have taken probably 50 urine tests (lab conducted and self conducted) all but two indicated no infection, only high leukocytes. My bladder pain increased greatly in the time leading up to my hospitalization for kidney stones as well and I am sure they are correlated. It has been almost a year since this started and I am so lost and scared still. Doctors seem useless to me and never dig deep into my symptoms like I need and I’m left with debilitating pain. Like I said, any insight or help is more than welcome, I know I’m not alone but it feels like it completely. Thank you for reading.

I’m at a loss.

I was diagnosed with congenital neuroproliferative vestibulodynia years ago.

I thought the pain was only in the place I colored in red.

Recently, it seems like I’m having pain in the yellow highlighted part. The pain comes when I pee, use numbing cream, or use lube.

The craziest part is when I have used numbing cream recently, it hasn’t hurt to touch the part in red like it used to! But now the yellow part burns a few minutes after numbing cream is applied, or a little bit after I’ve used lube.

I’m frankly too scared to go the gyno because I’m worried about tests and the pain, but also financially as mine is one of the only specialists in my area but is a private practice.

Does congenital neuroproliferative vestibulodynia extend to the parts in yellow, or is that different? If so, what is the treatment for it, as my gyno suggested a vestibulectomy but I don’t know how that will help the parts in yellow.

Hi guys! I’ve been on a topical E/T gel applied twice a day externally on my vestibule and a tad internally vaginally for about a year now. It has helped me tremendously. However my doctor told me I’m about to reach the point where it’s time to taper off. Has anyone been able to successfully get off the E/T gel without experiencing a relapse?

Curious to know if you have other conditions alongside that you think/know are linked to your vestibulodynia?

For me, I think mine are pretty common with this condition and linked to hypertonic pelvic floor:

• Slightly hypermobile in some joints
• IBS-D
• TMJ dysfunction
• More recently, anal fissure
• Sensitive personality (hsp!)
• Anxious and hold it all in my body

Curious to see what our patterns are!

Hi, I am a 26W living in France, diagnosed with primary provoked Vestibulodynia. I was never able to enjoy penetrative sex, it’s possible but extremely painful. In September I started to feel spontaneous pain and burning. I got diagnosed with BV with gardnerella, atopobium and ureaplasma parvum. I was successfully treated for gardnerella but I still have everyday pain since. I know this is not the usual pain I deal with Vestibulodynia and I think this is caused by the ureaplasma so i am on the process of having it treated. Anyway regarding the vestibulodynia I don’t know what do to anymore. Never had any improvement. I tried creams with lidocaine, ointments, oils (coconut…). I did countless pelvic floor therapy (but my muscles are NOT tense). Indiba and manual massages. Nothing helps. I don’t know what to do and in France the doctors don’t even know about the subtypes. I don’t really know if I have neuroproliferative or hormonal mediated Vestibulodynia. I think both are possible because I noticed pain during my first intercourse but I was also on pill. I stopped the pill 2 years after and then got a lot of hormonal health issues (including PCOS and low oestrogens). My pain is HARD but really located on the vestibule tissue and nowhere else. I think I could be a good candidate for surgery. I am looking for a truly specialist anywhere in Europe (and the world). I am willing to travel. I can’t deal with this situation anymore and starting to feel very depressed. Every recommandation is welcomed 🙏🏼 thank you so much

Hi everyone,

It’s been a while since my first post where i spoke about my vestibulodynia and other pelvic floor issues.

Since my last post, I started physio therapy (in September) and it’s helped a lot with my muscle tightness and overall bowel movements. I noticed that after doing the exercises I wouldn’t have as much burning from my urethra which is a good sign. Breathing exercises helped a lot with relaxing in my pelvic floor.

In September I also went to see Dr Tania Adib in London, explained all my problems and she thought it is hormonally mediated. She prescribed me the Estradiol 0.01% Testosterone 0.1% Balclofen 2% in Ellage. She suggested to apply a pea size amount to the vestibule twice a day and to the clitoral hood, as I had some shooting pain from that too at times.

I didn’t start the cream immediately after receiving it as I had a sudden UTI caused by an E.coli infection. I had very bad symptoms-bleeding and pain when urinating and had to wait for that to be treated by 1 week course of antibiotics. After medication I had a change in discharge it was more ‘slimey’ i’d say so i got checked for Thrush/Yeast infection and BV but these came back negative. I then started the E/T cream even if i still had some discomfort in my urethra as i thought that will go away eventually if the infection cleared and i was doing physio and even if my discharge seemed weird as the tests came back negative.

I’ve been on the E/T cream for a month now can’t say much has improved, i think the Balclofen relaxes my muscles so i don’t have much discomfort in my urethra when i apply the cream.

However i’ve noticed that i have a weird smell down there now, sort of musty/ sour which is really bothering me. Does this go away eventually? Is anyone else having this issue? I’m not intimate with anyone atm as i’m focusing on my condition and tbh i’m quite scared that even if I was to be intimate with someone I would smell down there.

I have another appointment with Dr Tania at the end of January. Are there any tests I should ask her to do? Especially since I still have some pain in my urethra?

Hey guys, I’ve been on my E/T gel for the past 9 months, and thankfully it’s helped me a lot. However back in September, I got a Bartholin cyst. I actually found and decompressed it on my own, and then went to the doctor and she said everything looked fine. She didn’t put me on any antibiotics or anything. I haven’t had one since, but flash forward to now, I have one again. I thankfully seem to catch them very early and decompress them before it gets worse. But I’m not sure why this is happening. The only thing I can think of is that I obviously apply my E/T gel to the vestibule, and maybe this is blocking the duct? Any one else experience this?

Hi all! Wondering if anyone has had a vestibulectomy done through the Mayo Clinic in MN? And if so, what was your experience?

I've known that I have vestibulodynia since 2+ years and I finally got the diagnosis a month ago. My Dr. didn't validate my feelings when I already told her one+ year ago but it seems like she finally noticed that this wasn't normal. I made a post on here too over a year ago and everyone told me the same.

She gave me a few treatment options, but I'm not doing anything for now. I'm not sexually active so it's not an active issue. It sometimes hurts when I'm sitting wrong but that's about it.

I think it all started because I have too many male hormones. All started when I was 7/8 years old I would say, I got hair really early followed by my period at 9. I've had hormonal issues for my whole life basically and I'm on birth control for medication. So my guess is that my hormones fuvked my vagina up. (This was also an issue before I started birth control, when I tried tampons)

It doesn't bother me that much, given that I've had pain like this since forever, but I can't help but to feel sad, knowing that I will never really experience pain-free sex. Me and my ex partner used numbing cream, which sometimes worked amazingly, and sometimes not at all, leaving me in immense pain. I'll consider treatment once I'm in a long lasting relationship and the numbing cream doesn't do the work anymore.

I’ve been dealing with vestibular pain/discomfort for about 4 months now. Finally realized a month ago it was my birth control (Lo estrin Fe 1/20) stopped that. It’s been a month off it now and things seem OK. I got my period this month it was only 2 days late and lasted 6 days which is very normal for me. Of course, the pain and discomfort is still there. My dr sent me estradiol vaginal cream USP 0.01%. Last night was the first night of 2 weeks treatment. I only put it on the outside because that’s where my pain is and the skin of the vestibule looks rough and weird. Today though I’m noticing a very odd smell that’s not normal for me at all. Slight burning earlier as well but I read that the cream will do that. Is the smell normal though??Has anyone else experienced an off smell when using estradiol cream and will it go away?

I’m considering urethral gland removal. My was way better after a vestibulectomy (I have congenital NPV) then I injuried my hips and now have 24/7 rash feeling and PGAD. I’m considering getting the urethral gland area removed with Dr G because the hip surgeries are going to take a year (I need 6). But I also feel if I just waited for the surgeries I could feel better at the end of it, but the 24/7 pain is completely unmanageable and I’ve tried everything except diet bc nothing in my daily food habits has really changed since this started

i know not to let the insecurity this illness gives me get to me. but i’m in my twenties and feel wilted

Hi everyone! So after doing some research I think I have Vestibulodynia. I’m kinda at a loss on how to treat my symptoms. Firstly, I have PCOS. So I use combination birth control to control cysts. Secondly, I live in a state where abortion is illegal (and I don’t want a baby right now). I am on Lo Loestrin Fe and have been for 2 years or so. I was also on Spironolactone for about 1.5 years but have since topped taking it. My symptoms align perfectly with Vestibulodynia. However, I can’t take progesterone only pills due to PCOS. I will be stopping my combination pill in the meantime. Sex is agonizingly painful. How many people have seen improvement in symptoms with get off birth control/lSpiro alone? The first availability to see my OBGYN is in March, so I’m hoping to get some direction from y’all while I wait for my appointment. I’ve previously felt really discouraged about my symptoms, so feeling some relief about a possible diagnosis.

September 5th, I started experiencing discomfort during sex and difficulty to orgasm, which has only gotten worse. It feels like the inside of my vagina is rubbed raw, mainly at the opening, does not matter how much lube is used, or size or anything, it is painful and I've gotten to the point where I'm lucky if I can even enjoy playing with a toy for a short period of time once every 2-3 weeks. Even oral ends up being painful and leaves me feeling itchy. I don't feel this pain any other time, just with any sort of penetration.

I also can barely orgasm now, when I used to be able to extremely easily. I have to work at it and I typically end up in pain before I can reach one. I've started to lose interest in sex this past month or so, but I figured that was because it's painful and no longer enjoyable. Prior to this, my partner and I had been having sex 4+ times a week for over ten months with zero issues.

Since September, I have been trying to figure this out with my OBGYN. I had had an uti the week before this started so we thought maybe that's what caused it. All tests have come back negative for infections, my blood work is normal, I have tried a steroid cream and am now trying an estrogen cream. We have gone 2+ weeks without doing anything to see if that possible helps healing any irritation but it hasnt.

I'm trying to figure out if it's possibly a medication causing side affects, or something else. I've started to look into vestibulodynia a little bit. Is it something that you can just randomly get one day? How would I go about bringing this up to my doctor?

Had the first pain free sex in 4 years last night...had been drinking over a period of hours as was at a wedding - was not black out drunk but v relaxed, and I could not believe it was 100% pain free. Anyone else with pelvic floor dysfunction experience this?! Makes me want to get the pelvic botox as just can't seem to get in good habits with physio

So I waited close to a year to see a specialist gynaecologist. And I showed up and she had a huge baby bump. She validated me and said my pelvic floor muscles are super tight. Said something about it being nerve related. But the most I remember was that she wouldnt be able to do a follow up with me until next fall because she cant work any longer. She prescribed me two topical things and I have to try them and wait until next year. The only other option for a doctor would be to jump on another year waitlist..

I left upset because I felt mad at her for being pregnant! Which is so dumb and unfair to her. But this is just such a long journey!! She called me after the appointment and said one of her doctor friends would take me to do Botox. So that was good and I’m grateful. I wish I took pen and paper with me! I don’t even know the actual diagnosis.