r/vulvodynia

I have vestibulitis (very inflamed vestibule) as well as vestibular and clitoral pain, and a hypertonic pelvic floor. My new doctor just prescribed me a topical steroid cream, which I am told to use for 4 months. I understand that steroids reduce inflammation, but my thought process rn is that there is something causing my vestibule to swell, and that steroids would not fix that cause. So once I stop taking the steroid cream, won't my vestibule just swell up again? Also my doctor believes i do not have lichen btw. I also expressed concern about the steroid thinning my skin, and she seemed very sure that this would not happen to me. I think she said that skin thinning would only happen with longer term use? This is the first doctor I've had that actually genuinely seems knowledgeable and offered me a ton of insight and treatment options so I'm inclined to trust her, but I'm a little unsure about this.

Will you guys please let me know your thoughts/experiences?

I had finally gotten to a really good and manageable place with my IC and then I was intimate with my husband two weeks ago for his birthday (it had been a really long time bc I’m always petrified). We didn’t use any lube (huge mistake obviously) and now for the past two weeks I have been in agony!!! I went to urgent care 8 days into the pain and the doc said it was a UTI but I was suspicious cause it really didn’t feel like one, but was in so much pain I was hoping that was it. I finished the antibiotics today and the pain is still aweful. The worst part is that my vestibule (the entrance of the vagina) has been burning so badly and I cannot get it under control. I’m using ice, sitz baths and Tylenol with codeine, plus AZO on and off and am at an absolute loss for what to do. I was hoping with time this would improve but tomorrow is two weeks and I’m no better off than I was the day it started. I’m feeling so despondent and don’t know where to go from here. I don’t have an active urologist anymore cause they just wanted to keep doing bladder instillations which ended up making things 100% worse at the time 😢. Should I try and get into my gynecologist? Any other tips?

I have this every time and last time it got so bad that after a week, it’s still not fully healed. :(

Has anyone here suffered or is suffering specifically from clitorodynia? If so, how did you resolve it / how are you trying to manage it? I’m desperate. I’ve been suffering from it for 6 years and I can’t see a way out. Could amitriptyline be a possible solution? I’ve never tried it. I’m desperate. I think hearing different experiences and opinions from different women might help me. So please reply — it’s very important to me.

Hi. I have felt painful/tingling/fullness/“arousal” sensations in my clit for a week now. It is extremely sensitive and I feel it all the time, it is sore to the touch. This started the morning after a long period of masturbation one night. Went to the doctor and got prescribed lidocaine 5% cream. It does not help. Also got prescribed amitriptyline but scared to start it as it has many side effects and I don’t know how I feel about changing my brain. I am scared. Life has felt like hell and it’s only been a week. I’ve had suicidal thoughts. I have a loving boyfriend, best friend, and parents and I feel so terrible for feeling so awful and putting them all through this with me. When I google anything about any of these conditions, especially on Reddit, all I read are horrible stories of people never recovering, nothing ever helping, life being this way forever. It makes me cry and feel hopeless. I am begging anybody who has any success or recovery stories to please share and help me and others like me going through this experience find hope in the darkness. Thank you.

for those who have used amitriptyline and had success how long until it fully worked for you and what milligram thanks!!

hello… i really need help 🙏 i had unprotected sex with someone who was REALLY big. He pulled out, but i was very sore in my muscles afterwards.

My dumbass did it again two days later, and he finished inside.

It burned IMMEDIATELY, which i assumed was irritation from not letting any micro tears heal from the encounter 2 days prior… I thought it would heal. But now it has been like 10 days and my inner labia has been visibly red and inflamed. around my vagina is red and inflamed. It burns when the skin makes contact when I walk, and when it makes contact with urine.

I am negative for chlamydia, trich and gonorrhoea, and BV/Yeast, tho they did give me 2g metronidazole and 150mg fluconazole empirically. I am going to get tested for ureasplasma and mycoplasma gen tomorrow, however it’s very localized external inflammation.

I do have pelvic floor dysfunction, my muscles are always tense and I am chronically stressed. I am used to chronic pelvic floor symptoms, but nothing has ever been like this. Noticeably red and inflamed with this intense burn and itch. I am not sure what to think right now, but I am starting two new jobs and I can’t deal with this burn.

What can I do? Does anyone know what this is? I’m seeing my doctor on Monday, are there any treatments that I can ask him about? I would appreciate any insight.

I've been unsure about posting in this subreddit after lurking around for a while, but I'm seeing a gynecologist who specialises in vulvodynia in early june, so I thought I'd ask how to best prepare myself and present my case to get the most out of the appointment.

for some background info: I've (23) been suffering from vulva burning for about four months now. Got diagnosed with a yeast infection at first, did various treatments, nothing worked. Went to my gyno 3 times, pap smear, lab test (found nothing), microscope, everything looks great yay 🫩 Went to another gyno for a second opinion, another lab test, skin is a bit inflamed but again lab test neg for anything. Severity of my pain has been up an down depending on the day. I got send over to a "vulva issues consultation" at another place by my doc but they gave me an appointment in 6 months so I decided to go private, hence the appointment at the specialist now, who is quite far away.

Should I try to explain my history in detail or focus more on my symptoms? I'm planning to bring any documents from my past doc visits and also write down questions. Should I let her suggest treatments or ask about things I've read online (on her website too)? Some doctors don't like that... I really want to convey how much this has impacted me mentally and am hoping for treatments options and maybe recommendations for my own gyno, so she can help me too :,)

Hi everyone, I was wondering if there’s any way I can get some relief from this sore spot I have on my vulva. My doctor wants to do a skin biopsy on my but I can’t do it until next Monday (when my insurance kicks in cause I can’t afford anymore self pay appointments). She doesn’t want me using steroids until after I get the biopsy to ensure it’s accurate she suspects I have lichen planus on the vulva. It’s really sore, and red I’m just wondering if any of you lovely people have any suggestions ? Thank you

Anyone try this for vulvodynia? I have my first appointment scheduled in a couple of weeks. My partner himself is a health psychologist and says that the therapy is showing promising results for vulvodynia.

But it's SO expensive. And I just spent thousands on an unsuccessful vestibulectomy, so I'm reluctant to throw my money at something that might not even work.

For those who have tried, was it worth it for you?

Has anyone with hormonally mediated vestibulodynia (especially after coming off the pill) improved by going BACK on the pill temporarily while starting treatment?

I was pain free before coming off the pill, then developed severe vestibule pain/rawness after stopping it. I’m now back on the pill and starting Intrarosa while trying to get estrogen/testosterone compound cream.
Did anyone else experience:

tissue feeling “unsupported” or thin?

improvement once hormones stabilised again?

nerves feeling raw/surface-level even once tissue thickened?

Also, for anyone in the UK:
which doctors/clinics actually recognise hormonally mediated vestibulodynia?

who prescribed your estrogen/testosterone compound cream?

which pharmacies compound it?

From everything I’ve researched, localized estrogen + testosterone is considered the gold standard treatment for HMV, but a lot of doctors I’ve seen (including private gynos) have never even heard of the condition.
Would really appreciate success stories, timelines, or UK recommendations because this has been incredibly traumatic and isolating.

Hi Everyone!

It’s been about one year (and one month) since my entire ordeal started and I am doing so much better so I wanted to share my story in case anyone needs a little hope.

Feel free to look through my past posts to see everything that happened to me, but here’s a quick summary of the insanity!

April 2025-
Diagnosed with a wart on my pubic area had a complete mental breakdown, and as a result started constantly checking myself down there and severely over washing. This caused what I now know to be lichen simplex chronicus but at the time I had no idea what it was and it took like six months to get properly diagnosed.

May 2025-
Because I was constantly “checking” myself in public places I threw off my pH and gave myself my first ever case of BV and possibly also trich. This caused massive amounts of swelling in addition to my lichen simplex. Also, sooooo much discharge, which irritated my skin further. I’ve been told that the trich was possibly a false negative since I tested negative for it and then randomly tested positive for it a week later, even though I was not sexually active. Either way, at the time I just wanted to feel better so after taking a full dose of metronidazole for BV I took ANOTHER 10 days of oral metronidazole (torture).

June-August 2025-
Saw MULTIPLE gynos trying to get help because I was not feeling better after the antibiotic. My vulva was so swollen it felt like I had balls honestly. I was prescribed multiple low-dose steroid ointments or creams, which helped a little but the issue kept coming back. My vulva was so swollen I could barely wear underwear, could not walk, could not sit. I was calling out of work constantly, and because I became so sedentary, I ended up in so much bodily pain.
My neck, my back, my hips, my legs hurt so bad I could barely walk. I believe I gave myself pelvic floor dysfunction from clenching down there. I was getting neurological issues like pins and needles and muscle twitching. I wasn’t eating. I literally was deteriorating so fast. It was at this time I got diagnosed with vulvadynia and was advised to go to pelvic floor therapy. I did three sessions and I was like “this is not working for me.” I ended up starting regular physical therapy for my back, which helped a lot.

September 2025-
I found a gyno who finally listened to me and started to think outside the box. This was gyno number 4 I think? She tested me for urea plasma and myco plasma (negative thankfully) and she was an angel sent from heaven because she finally said to me “have you ever seen a vulva dermatologist?” and I was like no I didn’t even know they existed!! She referred me and I finally got to see the vulva derm in October 2025.

October 2025-
This dermatologist who specialized in vulva skin read my story from the notes my gyno sent her and basically walked into the room saying I know what’s going on, but let me see the skin so I can make an official diagnosis. She took one look at me and was like “Yep” “lichen simplex chronicus”

During this time, I was still in physical therapy, but in excruciating pain because my body had deteriorated so much at this point.

She put me on three weeks of a high, high dose steroid ointment, which helped so much. She said the steroid ointment the other gynos were giving me were way too low. I was terrified to take the high dose steroid but at this point I had to do what I had to do so I could get my life back.

After that, she told me to use Vaseline twice a day for maintenance and prescribed me another type of prescription ointment, which I was nervous about taking so I never did.

October - February 2025-
Healing was extremely slow, but I was doing better. I was getting frustrated that the Vaseline wasn’t doing that much so I switched to coconut oil which helped a lot. But to be honest, that didn’t do much either.

Here is what finally got me to “mostly better” and gave me my life back!

In February 2025 I went for my follow up with the dermatologist and she confirmed that my skin is looking a lot better but I told her I’m still in a lot of pain. I asked her if I can use Aquaphor and she said that’s fine. I was frustrated at first because the Aquaphor helped but didn’t immediately fix everything but I kept with it because it’s the first thing that I felt like made a big difference in my skin after using the high-dose steroid. I have now been consistently using Aquaphor twice a day since February 2025 (3.5 months) and my vulva is so much better I can walk and exercise without pain most of the time. I had to modify my wardrobe a little so I no longer wear jeans, but I can wear leggings to exercise and I’m back in Pilates three times a week!

Physical therapy helped my back and getting back into Pilates has helped me rebuild the muscle I’ve lost. I’m still working on that and I’m not where I was before, but I’m no longer calling out of work constantly and I’m back to living my life.

I definitely gave myself some pelvic floor issues because I have sitting pain now but I’m back in physical therapy to work on my cervical neck issues. (This is because in the meantime, I gave myself so many neurological issues from the stress and lack of physical activity. I thought I had multiple sclerosis. happy to report that an MRI showed I do not have MS but I do in fact have some cervical neck issues). I’ve only done a few sessions if PT on my neck, but I’ve noticed so much improvement in my overall pain throughout my body, including my sitting pain, by getting my neck back in order. it’s crazy how all of these things are interconnected. Bodies are weird!

I also started supplementing with D3 and K2 liquid supplements since February 2025. I believe that has helped a lot with my skin inflammation and has helped my body heal in addition to using the Aquaphor.

Anyway, I’ve actually done a lot more, but this post is already super long. I hope it brings some people hope that even if you are in a merry-go-round of doctors, hopefully you will find your issue and sometimes healing takes time.

If you suspect that you have a skin issue, please seek out a dermatologist who specializes in vulva skin or women’s health. Ultimately, it was the dermatologist who saved me!!

What healed me:
-high dose steroid ointment 3 weeks 2x per day
-aquaphor 2x per day for 3.5 months
-d3 k2 liquid supplements daily
-physical therapy (back and cervical)

I also I am doing a lot of somatic work, which I believe is helping my body heal overall.

i’m not sure if this is appropriate or not if it isn’t i don’t mind it getting taken down but i’ll give it a try. i’m all alone in this pain and it’s one of the scariest periods of my life. can anyone talk to me?

Full Text (since paywalled):

Farrah was fed up with her vagina.

For the past two years, the 29-year-old dancer from Ohio had been dealing with severe pelvic pain and vaginal odor. “It was like 8/10, horrible core pain,” she says. “I couldn’t lie down. I couldn’t even work an office job. It was bad.”

When she visited doctors, she told them what she thought the culprit was: an allergic reaction to soy oil in a vat of water she’d swam in during a pirate-themed dinner theater performance. But they didn’t believe her. “They attempted to fix it with antibiotics,” she says. “And they just did nothing.”

So Farrah (who requested we withhold her full name to speak freely about health matters) started Googling her symptoms. That’s how she stumbled on NeuEve, a vaginal health company that provides supplements, suppositories, and at-home vaginal microbiome testing kits.

She ordered a test from the company for $150, and it came back with a diagnosis: aerobic vaginitis (AV), a bacterial infection caused by an overgrowth of E. coli or streptococcus. She ordered supplements the company recommended, and she says the pain abated almost immediately. “I was just so glad to actually know what was wrong,” she says.

Farrah is one of a growing number of women who have used at-home tests to self-diagnose issues with the vaginal microbiome—an ecosystem of bacteria growing inside the vagina; the presence of “good” bacteria correlates with lower risk of STIs and other types of infections, according to numerous studies. The industry got a shoutout when the Silicon Valley entrepreneur Bryan Johnson recently posted on X that he had just given oral sex to his girlfriend, Kate Tolo, then followed up with a screengrab of her Tiny Health vaginal microbiome report. He proclaimed that she scored “100/100” and that hers was in the “top 1% of all vaginas” due to the dominance of Lactobacillus crispatus, a type of “good” bacteria found in the vagina.

Johnson’s thread garnered widespread mockery, with many questioning why Johnson would publicly quantify his partner’s vaginal health in such a fashion. But it also received replies from women online who are tracking their own vaginal microbiomes to treat their bacterial infections, to boost fertility, or just out of interest. Some even posted their results.

The market for at-home vaginal microbiome tests is growing—Tiny Health, the startup Tolo used, claims vaginal health testing sales spiked 2,000 percent within the first 48 hours of Johnson’s post—and similar companies include Juno Bio, which partners with Neueve; the UK-based Daye, and Evvy. But some experts believe there’s not yet enough research to support the long-term validity of such tests. None of the at-home kits on the market are approved by the FDA. There are also questions as to whether they empower women to take their health care into their own hands or simply create more anxiety for them.

Twenty-eight-year-old Samantha (she also requested a pseudonym given the sensitive nature of this topic) developed an interest in vaginal microbiome testing after experiencing a bout of bacterial vaginosis, or BV. She ordered a testing kit from Evvy upon the recommendation of the Facebook group Beyond BV, which offers support for women with recurring vaginal infections, and where they often post their own results.

Samantha found her test results useful, but she also noticed a distinct strain of paranoia within the group. For instance, when many women receive their results, they tend to focus on whether they have enough Lactobacillus crispatus, or “good” bacteria, in the vagina. “I'll read posts where women are freaking out if they have like 97 percent crispatus and then they'll retest and they'll have like 60 percent and be really disappointed and scared,” she says. The opposite also holds true. “Women will post about having 100 percent crispatus and other women in the comments will just be like, ‘Oh, I'm so jealous, I'm having so many issues, I hope to be you one day.’”

In internet communities like the subreddit r/Healthyhooha , which has more than 100,000 members, women regularly discuss their ratios of “protective” to “destructive” vaginal bacteria, often trying to optimize the former. Some take vaginal microbiome tests multiple times, as a preemptive measure to avoid future infections. Research indicates that 50 to 80 percent of women who get BV once will get it again.

Longevity researcher Kayla Barnes-Lentz tests her vaginal microbiome about twice a year and publicly posts her results. (She also uses Evvy and acts as a paid adviser for the brand.) She started testing it not because she has any underlying health issues, but because she wants to do everything in her power to try to boost her numbers—for instance, she says she got her 97 percent protective bacteria score up to a 100 percent by taking vaginal probiotics.

“We know that decline occurs as we age, and I want to be as protected against that as possible,” she says. “I’m always striving, and I’m always in competition with myself.”

Evvy founder and CEO Priyanka Jain says the company has served more than 100,000 patients since its launch in 2020. She says that while the vast majority of her customers struggle with preexisting vaginal health issues, 10 percent take the test out of “curiosity,” and more than 50 percent are regular subscribers, taking the test every three months, either to track their fertility or prevent recurrence.

There’s a paucity of research surrounding the vaginal microbiome in comparison to the much better-known gut microbiome. This is in part due to gender bias within the scientific research community, says Hana Janebdar, the founder and CEO of the vaginal microbiome testing startup Juno Bio. Historically, “there has been this huge amount of research and commercialization into every aspect of microbiomes except how it pertained to women's health,” she says.

But even though recurring BV infections among women are a legitimate issue, some researchers say the utility of taking an at-home vaginal microbiome test is debatable—especially when one is asymptomatic, as Barnes-Lentz and Tolo were.

The vaginal microbiome is ever-fluctuating and can vary depending on factors like diet, sexual activity, and whether someone is pregnant or menstruating, says Jacques Ravel, a vaginal microbiome researcher at the University of Maryland. (Ravel is also listed as a scientific adviser to probiotics company Seed.) “It’s a very dynamic system,” he says. “Knowing what happened at one point in your life won’t really tell you much about what’s going to happen even two weeks from now.”

Vaginal microbiome diversity also varies by race and ethnicity: Black women, for instance, are statistically more likely to have less Lactobacillus crispatus, the protective bacteria, than white women of European descent, but that doesn’t necessarily indicate a problem with their vaginal health. And some women can have little to no lactobacillus and be perfectly healthy.

The tests also typically suggest treatment protocols like antibiotics or probiotics, some of which can disrupt the bacteria ecosystem in the vagina if introduced unnecessarily. “You're going to maybe end up with something that might not be optimal for you, and all of a sudden you're going to start having problems,” such as worsening irritation or discomfort, Ravel says. “I think that’s dangerous.”

When asked about such critiques, the CEOs I spoke with take issue with the idea that the tests provide zero insight into long-term vaginal health, arguing that results fluctuate far less than Ravel suggests. While Kimberley Sukhum, the chief science officer at Tiny Health, agrees that unnecessary treatment such as antibiotic intervention “can be harmful,” she says biomarkers such as lactobacillus dominance are “not fleeting signals. They reflect the underlying character of a woman’s vaginal community at a given point in time and are associated with real health outcomes.”

Regardless of the long-term utility of the tests—or, at the very least, the ludicrous idea of a woman having a “top 1%” vagina—their popularity undoubtedly points to a larger issue within the women’s health space. Until 1993, researchers were not legally required to include women in clinical trials, contributing to a massive gender gap in data. The women who regularly test their vaginal microbiomes are trying to find their own answers within a medical system that has largely failed them.

“We have not done extensive research or funded enough for extensive research to come up with new medicine to solve this problem,” says Ravel. “For almost 50 years, we have not come up with a solution to help women. And I think that’s very, very sad.”

Has anyone found anything to help with the lingering burning after sex? I either have to drink alcohol or go to sleep for the pain to go away. It’s so frustrating. I used to just have pain at the beginning of sex but now it’s during and after too.

I stopped BC two years ago to help my vulvodynia, but it seems my body hates any form of condom. Would love any sort if advice, condom recs, or aftercare pain advice.

I learned about a year ago that there is a vulvar dermatologist in my area, but I was quite disappointed to find how difficult it is to get in to see her, so after a long time on her waiting list and referrals from 2 different docs, I saw her today and I’m so encouraged! She diagnosed pudendal neuralgia, prescribed PT, Gabapentin, Intrarosa, and GALB cream. While there, I happily agreed to Botox injections. Not covered by insurance, but i was glad to pay OOP. The shots were truly not that painful and while she said it might take a few days to take effect, I swear I feel better just a few hrs later. I’m very hopeful that these treatments will provide relief. For now, I’m just happy to see a doc that understands!

Hey everyone, I’m really desperate and hoping someone has experienced something similar or can help me.
Five months ago I had a yeast infection and bacterial vaginosis, which unfortunately went untreated for too long. After about four weeks, and with the right medication, everything finally cleared up normally. But what didn’t go away was the pain when peeing. I got tested again for chlamydia, UTIs, yeast infections, etc., but everything came back negative. My gynecologist said it was probably just irritation and would go away soon.
Then I started looking into it with AI (Ik it’s not reliable but i was desperate). I described my symptoms: burning shortly before and at the beginning of urination, plus a slight pulling sensation in the urethra for about 10 minutes afterward. It gave me tips like avoiding friction, drinking a lot, relaxing the pelvic floor, applying Bepanthen externally, etc. Over the weeks and months, it actually did gradually get better.
For a while now, the pain has mostly been around a 1/10. I even sometimes had completely pain-free days, at least during urination, but then it would worsen again from slight irritation or seemingly for no reason. Recently I was even pain-free for an entire week, but just cautious and brief sexual contact immediately set me back again.
AI says that at this stage, the most important thing is my mindset, because the nerves need to become desensitized again and I need to stop focusing on it so much. That’s really hard for me because I have OCD and sometimes obsessively think about it. After days like that, it genuinely does feel worse again.
Vaginally everything seems fine to me, no pain or anything, not even during sex.
Has anyone experienced something similar or know what this could be?

Hi everybody, can somebody share how they found a compounded estrogen/testosterone cream in Europe? Is there a clinic/doctor who provides this kind of treatment? I suspect I have hormonally mediated vestibulodynia but doctors here in Greece know nothing about it. Most of them haven’t even heard of it lol. I’m willing to travel anywhere in Europe.

Hi everyone, I wanted to share an aspect of my recovery from vulvodynia that's been bothering me for some time, and whether it's a common phenomenon. I want to make an important premise: the team of doctors who treated me (especially my pelvic physiotherapist and myofascial release physiotherapist) were absolutely fantastic. They were competent, compassionate, and thanks to their therapeutic journey, today, a year later, I can say I'm happily pain-free.

However, there was one sour note they kept repeating to me during sessions: they told me to "find a steady boyfriend," and that if I found one, I'd resolve the problem much more quickly and achieve stable results. In hindsight, I find this advice completely misplaced and the product of an outdated medical mentality that views a woman's body as a function of penetrative sex or traditional heterosexual relationships. The overwhelming proof? After recovering and finally freeing my body from neuropathic pain, I realized I'm asexual. I'm fine as I am, I don't feel the need for intercourse, and my physical stability is perfect even without a partner or forced stimulation. I didn't need a man to heal, I just needed adequate medical care.

Have any of you ever received this kind of relational/sexual "prescription" from therapists? I'd also love to talk to other women who, just like me, identify as asexual (or on the asexual spectrum) after recovering from or dealing with vulvodynia. How have you experienced your relationship with therapy and your doctors?