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.

Has anyone seen Dr. brooks? I saw him today for cytolytic vaginosis. However he REALLY pushed a biopsy saying I probably have lichen planus? I don’t have glassy erosions like you see with that condition. I’m so confused.

I’ve read elsewhere on reddit that he often pushes biopsies and falsely diagnoses women with this condition. Has anyone else had this experience?

Anyone here who syntribated? I used to do it a lot, but most people don't face issue although I did. My vaginal opening and tissue around it is very painful, the pain comes from some glands inside on both sides idk what that is. Even inside vagina the walls of the tissue hurt till deep inside, it increases with friction. It's persistent since a long time now. I've never been sexually active and I'm scared to be too. Please help anyone, any suggestions or advice?

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.

I am 32 F experiencing HSDD & previously Vestibulodynia (but have cured with estrodial cream). I am posting here to see if anyone can relate to pieces of my story and either relate to me (help me feel less alone in this) or give me some perspective or advice I haven't tried yet.

I have been dating my boyfriend for 2 years now, and we started the first 1.5 years of our relationship doing long distance. In that time, sex was a huge focal point of our relationship. I've always struggled with a lower sex drive and chronic, but on-and-off vaginal pain during sex, but when I met him, I went through a sexual revolution. We'd have sex 1-4 times a day when we'd see each other. I was over the moon & figured my sex drive & Vestibulodynia pain issues were over now that I met my forever person.

As soon as we moved in together this year, I did a full 180. For whatever reason, I could not longer have sex - I didn't crave it, and felt a major block around being able to relax and get turned on. If I can't get super turned on, then I know I'll experience vaginal pain and tightness - creating this horrible downward spiral or pain loop. I've talked to my partner about it endless and thankfully he's understanding and never pressures me. He re-assures me that this is just a phase, but I'm starting to feel hopeless. I want to WANT to have sex again, and I don't want our sex life to be me going through the motions because I can't get into it the way I want to.

Throughout this year, I have tried everything: I've done a few sessions of pelvic floor therapy, which sent me on a journey to a urologist. The urologist diagnosed me with Vestibulodynia, and did a blood test to confirm I have low testosterone. I'm now on hormone replacement therapy (as of 3 weeks) but know it will take more time to see changes. I also worked with a therapist who specializes in tantra, which has been transformative to help me understand my own self-constructs around sexuality, especially having grown up Catholic.

I've spent so much time, money, energy and emotion trying to unravel this HSDD and pain during intercourse, and I am so disheartened that I can't *really* tell any progress has happened. Does anyone have any words of wisdom or tangible encouragement? My friends have ended up saying unhelpful or hurtful things when I've tried to open up about this. I find most people can't relate to my experience, or fathom not being able to enjoy intercourse.

I know what's possible for me based on the first year of my relationship, and I am committed to accessing that part of my sexuality again.

Namaste.

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, ...).

I can’t even urinate while on my period without feeling the raw/burning/intense pain. Of course I don’t wear tampons, but even pads cause pain that gets even more intense when I urinate.

Every time I go now, I pray that I’m one day closer to my vestibulectomy, that soon I’ll have enough saved for the surgery and recovery.

I’m scared for the PT and the recovery process because I’m scared of the pain. But it can’t be as bad as this, right?

Vulvodynia/Vestibulodynia

Hello everyone, I've had vulvodynia for eight months and I'm still trying to find a plausible reason. My symptoms in brief: pain (burning, stinging) in the clitoris, frenulum and vestibule (only between the clitoris and urethra), urge to urinate even though the bladder is empty and sometimes PGAD. I've only had occasional itching for three weeks.

Since the symptoms began, I've noticed something that I'm not sure if it should be like that. In the area of ​​the vestibule that hurts (between Clitoris and Uretha), I can remove mucous membrane. Even though I'm very careful and use a cotton swab with vaseline, it hurts. The skin underneath is only slightly red. It's similar to when you hurt your mouth and when the wound heals, a white layer comes off. The one from the vestibule is just thinner. I talked to my best friend about it today and she didn't experience anything similar. I saw many doctors, including gynecologists and dermatologists. Yeast has been ruled out, but I also have skin problems in other parts of my body: psoriasis on the head, a spot on the ear and belly button and chronic anal eczema (over 15 years). I have already tried steroids, but it doesn't get better.

Since I'm stuck with doctors at the moment, I wanted to know if it's normal for skin to come off on this part of the body. I also postet in other threads. A user wrote to me, that she was experiencing the same thing with her vestibuludynia.

Thank you, if you read all of this! If anything isn't understandable, I used Google Translate. I wish everyone who's suffering a lot of strength!

Is it possible to have BV long term, which could cause the very red annoyed entrance that burns when penetrating? I do remember that 4 years ago when I noticed I have this condition that I also had a period that my discharge smelled really fishy etc and that I tried to use a capsule and cream to put inside my vagina but it never really worked because it hurt too much back then. So after that I don't think I ever got it treated so might it be somehow still lingering?

I did go to a GYN recently but idk if she tested me for that she only looked on the surface and inside with a vaginal echo.

Just a little vent.

So I had a partial vestibulectomy in February. The short story: nothing helped my pain for 4 years and I had to beg for my specialist to perform vestibulectomy after many many failed attempts to cure me. She said she will perform the surgery if I go to the pscyhologist she refered me to. (So even tho she’s a specialist she still thought it’s in my head 🙃) I went to therapy for about 20 sessions under 6 months. Surprise surprise I’m not mentally ill, I have real pain🙃 so talking with my therapist we booked a surgery I still had to wait another 7 months. (i was still going to therapy until the 3 month post-op mark) Before surgery I had to talk another professor to get a second opinion (it’s a thing in my country, it was state hospital). This professor is not a specialist in vulvar pain and a man. He disagreed about the surgery. He offered couple’s therapy as a solution. During the talk, I cried like a little baby BEGGING for someone to take the RED INFLAMMED TISSUE out of my body. We compromised in a partial vestibulectomy instead of a full, because my pain was mostly in the 5 and 7 clock area. Well, it has been 6 months since surgery and I still have pain at 6 oclock and a little bit at 9 oclock. - so I needed a full vestibulectomy, but I was robbed of it because of the lack of empathy and qualification of doctors. (Oh and histology said chronic inflammation for my removed tissue…….)

I haven’t heard about labiaplasty until like 2 months ago. Guess what it is - if you have too big, prolonged, saggy labia minora, you can ask to cut it off due to ✨aesthetic✨ reasons. Yes, you heard it right. If it makes you insecure, you can ask for a surgery. To have a pretty pussy for men or to look at the mirror. And it is very popular in my country. I know for some it can cause irritation during biking and stuff, and I AM happy that woman have this choice. I’m just jealous and disappointed that I HAVE PAIN and I WAS HUMILATED MANY MANY TIMES that I wanted to get rid of my pain by surgery - maybe because it was a state hospital and didn’t paid for that only my insurance did. This is so fucked up I’m sorry. I had to vent.

What are your opinions about this? I don’t want to hurt woman who are uncomfy about how their vulva looks like - I’m not angry at you I’m angry at the doctors. I didn’t have a choice.

Have a nice pain free day 🩷

I had my hymen surgically removed when I was 15 as it was 4x thicker than the average hymen. Since then it was uncomfortable to put anything inside but I was still able to put a finger and tampons in for a bit. Then when I lost my virginity it was kind of a traumatic experience but I was still able to have sex after with minimal pain. After a while sex got more and more painful to the point where I couldn't push through anymore. The first gyno I went to had told me I had vaginimus but my current gyno thinks it's vestibulodynia. She had done the q-tip check and the pain was at the 4,6 and 8 position, the worst being the 6 position. I've tried a couple different medications like amitriptyline and gabapentine and nothing worked. Now I'm being sent to a pain clinic that specializes in chronic pain. I also plan on seeing a pelvic floor therapist soon. I'm also on the lowest form of birth control and have been on it since I was 15. I feel like I've gotten zero answers for what caused this and how to fix it. I was just wondering if anyone on here had some ideas or experiences or advice on my situation. Any help would be greatly appreciated, I'm at my wits end here. Thanks.