Hey everyone, I just started dating this girl and so far she is nothing short of beautiful, amazing, and charming. I really, really, like her. Last night she was comfortable enough to let me know she has something called vestibulodynia. Hers is of the neurological kind. What I want to know is how can I make her life more comfortable? With Christmas around the corner is there a gift of some sorts I can get her? I’m still trying to do some research, and so far it seems like apart from medical treatment, there is no way to help. I want to show her that I really care about her and vestibulodynia isn’t a problem for me. Though in reality, it doesn’t affect me at all as it does her. So, I come to you for guidance. I already let her know I’m not after sex and that her personality alone is enough for me to want her. Please help!! I really like this girl!

I’ve used my E/T compound religiously for about 6 months. I recently got a yeast infection that won’t go away so I paused, and I’ve been running very low on my cream (my doctor took ages to approve my refill). Now I’m rationing my cream and it burns to apply. I’m panicked. Can someone provide some comfort, will I be okay if I’m not using the cream as often?

Hi there,

I’m on an E/T compound cream. I’ve had a yeast infection for about 5 days so I’ve stopped using the cream while this heals.

Is this the right thing to do?

I have diagnosed vestibuledonyia and am using a compound Testoterone/E.

I didn’t have sex, but I had some rubbing and touching and woke up with itching. I had the cottage cheese” like discharge yesterday (none today). No strong smell.

I know OTC creams are a no go. What are my next steps? Are oral antibiotics safer? Any natural remedies?

I also have vaginismus so I’m not great at getting swabs.

I have a raging rash right outside of my vagjnal opening. Not sure what it is yet, but any ideas of things that might help?

Hi! I just scheduled a vestibulectomy and laparoscopy for the 26th of this month…right before thanksgiving. My husband and I are supposed to be going out of town to visit my family that weekend, but now I’m not sure. I’m curious to know how your recovery went if you had surgery and if you would feel comfortable traveling a couple days after the surgery?

For info…it’s a 3 hour drive and we have nothing major planned except hanging around the house and eating food, so I’d be able to lay in a recliner and relax and also would have extra help with my baby (9 months)

Please help. I feel like I’m broken forever and I’m only 21. This all happened because of a birth control pill I was on from 18-20. I got diagnosed with hormonally meditated vestibulodynia. I’ve been on a 10mcg insert of estradiol twice weekly and e/t twice daily for the past 9 months. Stoped insert to only once weekly two months ago. My tearing from literally just walking came back yesterday. My period was three weeks late. So even though my insert was supposed to stay local it obviously went systemic. Why is this happening to me. It seems like this is a hormonal issue obviously for me, is there any way to just fix my hormones naturally so I don’t have to be on these pills forever? I don’t want to get cancer from them. I’m so scared, I’m going to have to quit my job again because I can’t walk without tearing again. I can’t live like this. How do we heal our bodies and hormones after birth control.

Any idea what this may be?

https://imgur.com/a/yNimrEc

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

My partial vestibulectomy that was scheduled for November 18th with Dr.Patel has been cancelled because my insurance refuses to cover it. I am extremely upset that my chance at feeling some relief has been pushed back. I’m tired and confused. Cigna denied my prior authorization a week ago. I called and they said my doctor had to do a peer to peer review. Not sure if that ended up happening but I got a my chart message from the surgery scheduler telling me my only option to hold my spot is to self pay. I am devastated.

After many years of trying more conservative treatments, I’m scheduled to get a vestibulectomy in less than two weeks. The timing of this surgery is odd because of what has unfolded in my life over the past month. I took some big steps to improve from chronic migraine and I’m seeing results with way less migraines. It seems like lower migraines is connected to lower inflammation for me. And now it seems like the vestibulodynia symptoms are improving too. I’m struggling with whether to cancel/postpone this surgery. My question for the community is whether anyone has experienced a lowering of vestibulodynia symptoms through lowering inflammation through one method or another. I feel very lucky to have gained access to this surgery but of course would rather not undergo this if I might be on to something important.

Hey everyone! After 15ish years on hormonal birth control, I got diagnosed with hormonally mediated vestibulodynia. I stopped using birth control and started using E/T cream locally. Since then I’ve had almost complete resolution of my pain. I get a little more sensitive around my period, but otherwise I don’t have any pain or sensitivity anymore. But I’ve noticed that, despite it being pain free, sex is also pleasure free? Other than when I have clitoral stimulation sex basically feels like nothing. I know the vagina doesn’t have that many pleasure nerve endings, but I do remember some local pleasure sensation and enjoying sex before birth control. Wondering if anyone else has gone, or is going, through this and can offer any insight on if this improves with continued use of the E/T cream? Thanks!

Hi everyone .. around the vaginal orifice, the area is purple in color, the area that delimits the hymen and vestibular mucosa. when I touch with the cotton bud I feel a pinch of pain, with my fingers less so. I've never had penetrative sex, just rubbing. Is it normal for that area to hurt a little to the touch or do I have vestibulodynia? I have no other symptoms

I’m a 28 year old female. I have dealt with pain with sex for the past 10 years, when I was 14 I started masturbating and had explosive orgasms with just my fingers. Since I started having sex, and associating sex with pain, my sensitivity has decreased to the point I can rarely feel anything. I was on lexapro for a while and recently got off, and was also finally treated successfully for my pain (vestibulodynia + hypertonic pelvic floor), I want more than anything to be able to feel pleasure again. Right now when I masturbate it’s a ton of work for barely any reward. How do I increase sensitivity and pleasure again?

Finestride to manage DHT levels

I am 30 years old. I have hormonally provoked vestibuladynia treated by Dr. Irwin Goldstein.

When reviewing my labs he found my total test to be 0 and my DHT to be within normal range. He explained that I likely produce too much of the enzyme that converts test to DHT but we would monitor with treatment.

I started treatment 8/2023 which resulted in - e/t cream compound Test on calf

I felt incredible after just a few weeks/almost all my unprovoked pain subsided.

Three months later I started having multiple side effects as my DHT was getting way too high. Teeth sensitivity/hair loss/acne/mood swings etc

I stopped the test on my calf and side effects eventually subsided.

I was overall doing okay and then we finally got pregnant July 2024. I felt incredible hormone wise and had no unprovoked pain.

I then learned it was ectopic and had to be treated with 2 rounds of methotrexate.

My hcg is officially 0, I just had my first period and confirmed that I am ovulating again via ultrasound. The problem is my hormones have tanked. My total testosterone is <3 and my DHT is well within normal range and my unprovoked pain is back.

I know I need testosterone. Goldstein loosely mentioned Finestride months ago. Dosing would be very small (2x per month). This med stops the enzyme production creating testosterone to DHT. I have heard not great things about this RX so never gave it much thought but considering the boat I am in am considering it.

Has any woman taken Finestride purely to manage DHT levels while using topical test?

Hello, recently was made aware of this condition even though I was diagnosed with vulvodynia & vaginismus. Previously tried pelvic floor pt, Valium suppositories, Botox injections, dilators etc. We did the q-tip test and my obgyn does think this is the condition I have had all along however, she does not think I am a candidate for estrogen cream since I am pre menopause & thinks I should try lidocaine gel first (I have neuropathy so am reluctant to try this). How do you get this prescribed? I am 27- off bc since 2/24

TLDR: give me tips to get estrogen cream please!!

Like some I've seen in this group, I will be traveling out of state for the surgery. Unfortunately, I have a fear of flying to the point that it is not an option at all for me. My doctor said I need to stay local at least 3 days post-op, but then I should be okay to travel back for recovery (as long as all goes well). So I'm wondering, has anyone in this group traveled after the surgery by car, train, etc.? If so, what was your experience like and do you have any tips/tricks you'd recommend?

Things like surgery process, recovery time, healing process, if it left any major differences in look or feel?

i don’t know how much longer i can keep going. the more i join these reddit groups: “pelvic floor” “vulvodynia” “vestibulodynia” “pudendal neuralgia” “interstitial cystitis” etc… idk what to do. doctors aren’t sure what’s going on. i’m 21 years old, struggling every single day. and the worse part about it is that i was completely normal, i dwell on being back in the past, never making the decision that started my pain, and wishing i could do it all over again and choose differently. i feel so much regret. why me i ask every day. in all these groups so many women (and some men) struggling everyday for years on end with no answers. it’s exhausting. i’m a mystery everyone says. we did all the tests that can be done, nothing bad. which is a relief but also, what is wrong with me? my depression is sky rocketing right now. will i win this battle? i ask myself that everyday. i’m not sure. i don’t want to be in pain anymore, but im scared to go, i want to live, but not like this. i know stress and depression are making this worse. i’m broken. i’m less.

these are my symptoms. if anyone can share anything. not just “have you tried pelvic floor therapy” or “have you tested for x infection” etc i’ve done all that, i need help and i mean real help things that are often missed or ignored. i can’t and i won’t do this forever.

bladder burns when full

imcomplete voiding w/ urination and bowel movements

frequent urination

vaginal burns all the time (sitting, standing, laying, clothed/ no clothes)

sharp and congested pain in vagina

pain with intercourse (burning)

burning dull pain sensation when aroused

lower back pain (sensitive tailbone area)

uncomfortable with sitting (pressure and pain)

burning in rectum area / congested

i’ve done pt, i’ve done nerve blocks, i’ve done cystoscopy, i’ve done pelvic exams, i’ve done pelvic ultrasounds, i’ve done hormone tested bloodwork, i’ve done it all. so any questions about any of my results ill be more than happy to answer. ill tell you about my medications (current and past) i have it all so please ask away.

I keep getting vulva pain all the time. Every time I wear underwear, walk, anything that presses on it, shampoo irritates it, sweating irritates it. It’s all the time. I’ve been to Gynecologists and dermatologists and they don’t see anything unusual. They say it looks fine but to me my vulva looks red, feels like acid on my skin, feels like someone sliced my skin with knifes or razor blades. Gynecologist used the G-tip test on my skin but they said I was fine, I didn’t feel any pain when they pressed the Q-tip on it. I was diagnosed with pelvic floor dysfunction and vaginismus. But I don’t know if this is can contribute to the vulva pain I experience.

I have congenital neuroproliferative vestibulodynia. I got diagnosed with it about four months and I've been in PT, acupuncture, and psych therapy for the past four months. I can't recall a single time I've really ever...I don't know, felt sexual pleasure or pleasure that lasts longer than about 10-20 seconds. It's just...it's incredibly frustrating and sad.

It feels like I'm doing all this work, despite it to be mainly for stopping pain, for nothing. I feel no pleasure in touching or doing anything, and I don't think I ever have. I've made huge progress in the past four months (I'm on dilator 4/5 which is massive for me because I struggled to even use 1 for the past seven years), but it still just feels useless. I never break down over this, I try to stay positive, I really do. But I got to a point last night after trying to use a toy for the first time where I was able to insert it where I just felt nothing. Not one bit of pleasure, not even pain. Just nothing at all and it broke me emotionally.

I want to know if I'm alone in this. I don't know what to do. I'm at the end of my rope, I just turned twenty five, and I'm feeling the weight of time rushing past me (I am so sorry that is so dramatic). I have a support circle, but I don't have any friends who have this condition and they don't understand. "You'll feel it eventually. You'll just know when you meet the person" "You need to do it with a human and not a toy", but the thought of even doing anything penetrative with someone and the fear of disappointing them through all this is horrifying to me.

I'm sorry if this is more of a vent than anything. I don't know where else to turn. I hope others have this problem as well or forgive me for using this subreddit to complain about something that could even be irrelevant to CNV. Once again, I've just lost all my optimism and had no where else to turn to.

A few years ago a Dr at sexual clinic diagnosed me with Vulvodynia, but did not tell me what caused it. I remember I got it after four times of morning after pills due to condom broke and had bv/thrush a few times. Flare up more right before period or after the period (after period symptoms are worse but symptoms got better after 10 days or so).

2022 I had one flare up that was so serious, my GP checked inside and she said all tissue looked normal except two red spots. She tested and no sign of sti or infection. I would like to ask if you have below symptoms as well

1. Symptoms are similar to atrophy, I struggle to put a finger in

2. When I put a finger in, I can feel inside the tissue felt like cooked beef, very rough , not smooth soft tissue. Even the inner labia isn’t as smooth as usual.

3. Sex is super painful and there was two spots caused more sharp pain, like when the dick touch those two areas, it’s super painful. One spot is 12 o’clock under the urethera, the other spot is inside ( upper wall).

2022 I had iud and the symptoms were completely gone, I had best sex, but I bled too often so I took it out after 21 days , I did regret taking it out.

Hi 👋 has anyone gained any weight in hips ,butt,arms with local estrogen/testosterone cream I’ve been on it two months I feel more thick in those areas and bloated easily ??

Hi! I was recently diagnosed with neuroproliferative vestibulodynia after seeing Dr. Irwin Goldstein in San Diego. I'm really nervous about getting a vestibulectomy, and want to be absolutely sure that it is my best option.

If you have received a full vestibulectomy, I'd love to know how our pre-surgery experiences compare. Was surgery able to fully get rid of the pain for you?

Below is my experience and story so far: It all started when I was 13, trying to use a tampon for the first time. It just simply wouldn't go in. The plastic felt like it was hitting a wall, and the simple act of insertion made me queasy. On top of that, my periods have always been very irregular (i.e. nausea, cramping, missed cycles, spotting that won't stop).

Fast forward a few years, I self-diagnosed with vaginismus. Tampons were still out of the question, plus I discovered I was also unable to penetrate with a finger or toy. Again, it felt like hitting a wall, which caused me to feel nauseous and lightheaded. After doing some research, I ordered a vaginal dilator set and began relearning how to relax my pelvic floor muscles. Over the next 6 months, I slowly gained better control and was able to take the biggest dilator without pain.

A year later, I had sex with my partner for the first time. Initial penetration definitely still hurt. In fact, every time I have sex, there will be a short burst of intense pain upon entry. The burning and searing will slowly subside, then return again whenever my partner pulls out and reenters. After sex, I have residual burning for hours as well as cramping in my lower abdomen. The spasms aren't just period cramps, they feel "deeper" somehow, and are sometimes so bad I can barely walk.

Fast forward to 2024. My vestibule and labia minora are extremely red and irritated. My PCP described it as looking like a rug burn. I tested negative for all infections. The entire area burns to the touch, and the burning can take hours to fully subside. However, luckily the pain is only provoked, never unprovoked.

Finally, I discovered Dr. Goldstein and scheduled an in-person consultation, during which he confirmed I have both hormonally-mediated and neuroproliferative vestibulodynia (most likely secondary / acquired since I don't have the referred bellybutton pain common with the primary / congenital type).

My hormonally-mediated diagnosis was based on the fact that my Free Testosterone level is only 0.2 (ideally it would be 0.6-0.8). Dr G explained this is likely due to my taking Spironolactone for years, as well as the combined pill. I was prescribed an estrogen/testosterone cream and DHEA capsules as treatment. After 2 weeks, I've noticed the redness has reduced significantly, and the tissue looks more moist and pink.

However, I was told hormones alone cannot solve my nerve issue. The second part of my diagnosis, neuroproliferative vestibulodynia, was confirmed by Q-tip test. During my VAT, I felt an intense searing, burning pain throughout the entire vestibule (minus 12 o'clock). I rated the pain as a 7-8. After being numbed, my pain level dropped to a 0-1. This gave Dr. Goldstein confidence that a full vestibulectomy would be my best and only option to completely and permanently get rid of my pain.

That brings us to today. I'm considering vestibulectomy but afraid it won't fix me, since my neuroproliferation is likely acquired, which has a lower surgery success rate compared to congenital neuroproliferation patients.

If you have or had secondary neuroproliferative vestibulodynia and received a full vestibulectomy – I would love to know your story. Did surgery ultimately work for you? Thank you for reading!

Hi everyone! I had my vestibulectomy 3 weeks ago and I would say my recovery is going great- but I do have some bad swelling near my urethra opening. It hurts REALLY bad to pee, and burns like crazy like a UTI, but it comes and goes depending on the day. I’m stressing out as everywhere else seems totally fine/no more swelling after the surgery. I’m taking pain meds because just just that one area is so bad. Did anyone else experience this after the surgery?

Hello I really need your advice. I'm having very dark thoughts at the moment. I have vulvodynia and now I have a hypersensitivity in the left vestibule that feels like a sunburn. Nothing helps. I also have pain towards my rectum. I'm thinking of np but I can still sit up. I'm on amitryptiline 25mg with little effect. Please give me some ideas of what has worked for you on this kind of pain 🙏

Hi, I have a question to everyone who suffers from vestibulodynia caused by hormone deficiency. Is “only” the vestibule affected or do you also have atrophy or pain in the vagina or elsewhere? Please also state the reason for the hormone deficiency (BC, menopause, ...).