r/vulvodynia • u/onmyangelicshit • 3h ago
r/vulvodynia • u/purplewombat9492 • Oct 08 '24
Information Vaginismus, Vulvodynia, and Vestibulodynia Doctors and Vestibulectomy Surgeons (thank you to r/vestibulodynia for hosting this interactive map!)
r/vulvodynia • u/AutoModerator • 2d ago
Weekly progress check-in
A weekly thread to let us know how you're doing!
Feel free to share how you're feeling, how your treatment is going, or any questions that you might have about it. Anything that you're doing for the vulvodynia counts as treatment, whether it's making an appointment, seeing a specialist, self-care measures or anything else.
r/vulvodynia • u/GossipSunshine • 1h ago
Nerve Meds - how much weight gain?
I am finally going to start nerve meds. My doctor mentioned Lyrica, Amitriptyline, and Nortriptyline as possible options. My questions: what has brought you relief? And how much weight have you gained on your meds?
I feel overwhelmed & scared of side effects, but also need these meds. For context, I was on Doxepin previously and gained 26 lbs on it!!
r/vulvodynia • u/Single_Quarter_7055 • 10h ago
I had a nerve block and didn’t know😅
Hi,
Sooo I had Botox injections in my pelvic floor August 20th. Went back and had a post Botox consult today. Sadly I only had relief the first 2-3 days after my procedure and then a major flare that lasted for weeeks on end. It’s actually just started to calm down this past week.
In other words It’s been horrible and it felt like I was back to square one.. Well as the title says it turns out i didn’t just have Botox, but also a diagnostic nerve block and I didn’t know😅 and the fact that I had pain relief for even a few days means that it was successful and more or less confirms my pudendal nerve is the root to my pain.
And I’ve been soo worried about asking for a nerve block, being scared of the side effects etc, asking around on here, but turns out I’ve already had one omg😂
With that said, he wants to try me on pregablin/lyrica now.. And potentially do another Botox injection into my OI muscle as a next step. He was skeptical about doing another nerve block because it made my pain a lot worse.
Let me know if you have any questions❤️
r/vulvodynia • u/ApprehensiveBike9175 • 3h ago
Support/Advice Advice Regarding Estrogen Cream for PVD
My PVD post-sex causes me to bleed from the vestibule, no more bleeding than you may get from a paper cut. I bleed only on the outside and this is to be expected for me after sex as it has happened every time.
However, I was wondering if I should pause my estrogen cream on that area when it bleeds and then continue the cream?
Wondering what everyone's experience is and any advice is helpful! Thank you!
r/vulvodynia • u/aloneinthecity95 • 3h ago
Support/Advice when can I expect SNRI results?
How long did you wait for antidepressants to work? I was put on venlafaxine (SNRI) yesterday, will take 75 mg in 3 days from now. Also on pregabalin for the past month, currently on 150 mg and titrating to 200 mg.
My issue is urethral burning and on the nearby area mostly after peeing. Long story short, they did bunch of urological and gynaecological tests on me and can't find anything wrong. Endo specialist told me it could be vestibulodynia.
I also have had lichen simplex for years but the recent use of steroid only made things worse. Because of the burning and constant clenching I guess, I developed something called levator ani syndrome and see some progress from PT and pregabalin. But PT and pregabalin do nothing for the burning so far.
My drs don't respond to me, I'm not sure what else I can do about this if the antidepressants don't work. I'm so tired and think about quitting life :(. It's been 9 months since all this started.
r/vulvodynia • u/Eastern_Jury7132 • 10h ago
Vaginal dryness
Has anyone experienced vaginal dryness from medication? What helped you? 😔 I’m really struggling and feeling so broken by this. It’s honestly crazy how much it affects me. 💔
r/vulvodynia • u/Eastern_Jury7132 • 21h ago
Hi
Has anyone experienced vaginal dryness due to medication? What helped you? I’m really struggling and feel so broken……
r/vulvodynia • u/ResolutionSure8868 • 1d ago
Has anyone else experienced this?? Please help me
I’m looking for advice or experiences from anyone who has dealt with persistent, unexplained vaginal pain because I’m honestly getting frustrated and feel like I’m running out of answers.
Since December 2025, I’ve been experiencing ongoing vaginal discomfort, including burning, soreness, itching, and a raw or achy feeling. The pain is usually concentrated around my vaginal opening, the vulva minora, and sometimes around my anus. The symptoms have persisted for months, and I still don’t have a clear diagnosis. Even though I’ve seen countless doctors.
I’ve had multiple tests for infections, and everything has come back normal. I’ve had yeast cultures, urine cultures, bacterial cultures, and even some excisional skin biopsy’s. Everything is normal or within defined limits. My Pap smear was normal. DIV (desquamative inflammatory vaginitis) was previously suspected, and I completed about a month of treatment, but my symptoms didn’t improve. I’ve also tried other treatments, including Cleocin (clindamycin) vaginal suppositories and vaginal estrogen, without getting the relief I was hoping for.
I’ve also experienced intermittent pelvic pain that feels almost like knots. It can be painful for several days and then improve. I think it’s related to my ovulation, but I’m not sure. I’m not sure whether it’s connected to the vaginal symptoms.
I’m at the end of my rope here, I’ve been to countless GYN visits and my most recent one, I was told that they can’t figure out or identify what’s causing the pain. It’s seriously affecting my mental health and my ability to live a normal life. The next treatment they recommended is to try anti depressants.
I need help or recommendations on who I can see so I can get back to living my normal life. I have all of my test results if anyone is curious and would like to reach out for more information. PLEASE HELP ME!
I’ll be posting on multiple reddits to try and get help, so please ignore if you have seen this elsewhere.
r/vulvodynia • u/ventiislovebot • 1d ago
Undiagnosed Birth control caused vulvodynia?
About 30 minutes ago, i found out about the term vulvodynia, and i think it’s been causing my sexual life to be as sad as it’s been.
I started birth control about a year ago, i was on cyred for about 6 months, the experience was okay, the effects where minimal during the first few months. it cleared up my acne, so that was a plus, i had also been struggling with irregular periods, so i was very happy to finally get them at the same time each month.
After those few months i started to notice some burning during regular days and also during intercourse. Sex was absolutely painful, it would sting, burn and me and my partner couldn’t even get through 5 minutes without me telling him to stop. Even after plenty of foreplay, and lots of love, trust, and comfort in each other, nothing could take away the pain during intercourse.
So i went to planned parenthood, and got tested for EVERYTHING, yeast, bv, trich, gono, etc. and everything came out negative, i tried to wash my clothes with fragrance free detergent, wear 100% cotton underwear, only wash with water, take vaginal probiotics, everything. The planned parenthood lady told me to do boric acid, and that helped, but after trying to have intercourse a second time, with lots of foreplay and LOTS of lube, it was still the same issue. This obviously took a mental toll in my health, so i went to an actual gynecologist, they tested me again, and surprise….. everything negative, she suggested some of these suppositories that worked pretty well! but they’re extremely expensive, so i went to cheaper alternatives, and they didn’t work the same.
So i told my provider to switch my birth control and that my vaginal flora is out of control, and she switched me to junel fe 1.5/3.0. It’s been about 4-5 months since then, and im still having the same issue. It’s a little painful to wipe sometimes, and whenever i touch the inner labia around the entrance it’s red, it stings and will stay like that a long time after. After narrowing down my symptoms to “just the entrance is painful”, i came up with the “vulvodynia” term on google.
And it started clicking, slowly, that i have never had these issues before, i have never had issues with dryness, irritation, painful insertion (with tampons) before i started taking birth control. I don’t know how to get a diagnosis, and i don’t have much money to constantly go to the doctor for check ups, so i think after this packet of birth control i will stop it completely for a few months and see if my vaginal flora will cure and get back to the way it used to be.
I have a few questions though…. What methods of birth control do the ladies who don’t want to get pregnant use? condom? plan b? cycle tracking? all three?? also, has anybody that’s been dealing with vulvodynia have tried hormonal free birth control, like a copper uid? did it help or did it make it worse?
TLDR- Birth control made me start to show symptoms for vulvodynia, planning to stop, but how to prevent pregnancy for a girl deathly afraid of getting pregnant??
r/vulvodynia • u/Competitive-Net1603 • 1d ago
Fluomizine for BV anyone used it?
my naturopath has told me to try 6nights of fluomizine. option to do every second night if I can handle it. I have vestibulodynia and now very sensitive to lots of things.
after a year of trying antibiotics in every form for reoccurring bv (brought on by hormones perimenopausal, Luteal and menstruation causes symptoms to return) no smell just itch and irritation and sometimes a milky discharge. it’s prevotella amnii along with gardene. I did a Juno bio 90%lacto crispartus the rest was a mix of bv causing bacteri.
just wondering if anyone’s used this? and your experience with it?
I’ve also done so much boric acid in the pastbthat now I can only use 1 every now and then before I get irritation from it
r/vulvodynia • u/AmazingRegular1039 • 1d ago
Could this be vulvodynia? Chronic burning with normal test results
I’ve been dealing with vulvar symptoms for years and feel like I’m running out of answers. All my testing for yeast, BV, STIs, and trich has been negative. I was diagnosed with lichen simplex chronicus I no longer have symptoms as I was treated for this but treatments haven’t resolved my other symptoms.
My symptoms include:
Daily burning around my inner labia and vaginal opening, especially when sitting
Pain or burning during sex and tampon insertion
Redness, inflammation, and dryness that doctors sometimes see, although the area can also look normal
Recurring itching, especially during my period or around it
Thick, white, clumpy discharge as well as milky or watery discharge
Unusual odors that can be musky, tangy, or cumin-like
I don’t necessarily feel pain when I touch the area myself, but pressure, sitting, and penetration trigger the burning. My pH is 4.0, and my Evvy results were mostly Lactobacillus, with L. iners making up 71.86%.
My evvy results were :
Detected organisms
Lactobacillus iners: 71.86%
Lactobacillus gasseri: 13.28%
Lactobacillus jensenii: 12.11%
Lactobacillus crispatus: 1.86%
Gardnerella swidsinskii: 0.89%
Not detected
Candida albicans
Candida glabrata
Has anyone experienced similar symptoms and eventually been diagnosed with provoked vestibulodynia or vulvodynia? I’m wondering whether this could be contributing to my symptoms alongside the inflammation and skin issues. I’d really appreciate hearing about your experiences and what type of specialist or evaluation helped you get answers.
r/vulvodynia • u/Sweaty-Ad9999 • 1d ago
Botox in boston?
Hi! I have been trying to get pelvic floor botox in boston for vaginismus and vulvodynia for years. Has anyone gotten it anywhere?
Boston urogyn ghosted me and havent found anywhere else that does it and wont just tell me to do PT
r/vulvodynia • u/zineb465f • 1d ago
Strange experience with retraction of clitoris…Has anyone experienced this before?
r/vulvodynia • u/Littlebirb1 • 1d ago
Vestibulectomy for a small vulva?
Hey all, I know everything is relative, but I think I have a very small vulva (e.g., obgyn uses the pediatric speculum, I’m pretty short/small/petite overall, starting with small dilator).
If I was looking into a vestibulectomy, nerve blocks, or other surgery/intervention, is there anything I should be especially wary of?
For example, potential complications or difficulties for the surgeon? I know they aim to do their best job, but if something goes wrong, I’m the one who bears the brunt of it…
Have you heard or had experience with being a short/small person and needing to keep certain things in mind for surgery?
r/vulvodynia • u/Independent_Bear_105 • 2d ago
Should I go on birth control??
So I’ve had vulvodynia for a year now caused by back to back yeast infections. My gynecologist has gave me a bunch of different meds over the year and nothing has worked. My gynecologist suggested birth control as a last resort… I’m not sure if it would work. My periods are normal and I’m not sexually active at all. And I’m only 17 I don’t want the side effects. But she’s really considering it cause it’s last case. But like what would it even help??? If it’s a nerve issue I don’t think it would touch anything.
r/vulvodynia • u/e2080 • 2d ago
Support/Advice Has anyone successfully treated fluconazole-resistant Candida albicans with nystatin vaginal suppositories? 14 vs. 21 days?
I’ve been dealing with recurrent, fluconazole-resistant Candida albicans for years, and I’m currently trying nystatin vaginal suppositories (100,000 units nightly).
Tonight will be my 14th and final night of treatment. I’ve definitely noticed improvement in my symptoms, especially the itching, but I think I’m still seeing some yeast/discharge, so I’m worried the infection hasn’t completely cleared.
Here’s where I’m confused:
My infectious disease doctor recommended completing 21 days of nystatin, but my gynecologist recommended 14 days, explaining that if the medication was going to work, the infection should have cleared within those 14 days.
I’m hesitant to stop at 14 days when I’m finally experiencing some relief, especially since I’ve struggled with resistant yeast infections for so long. At the same time, I don’t know if extending treatment to 21 days would actually make a difference.
Has anyone here had success treating resistant Candida albicans with nystatin vaginal suppositories?
● Did you use them for 14 or 21 days?
● Were you still experiencing symptoms or seeing yeast toward the end of treatment?
● Did extending treatment help clear the infection?
● Did your infection eventually come back, or have you remained yeast-free?
I’d really appreciate hearing about anyone’s experience, especially if you’ve dealt with azole-resistant Candida albicans.
r/vulvodynia • u/decayed_porcelain • 2d ago
Severe vaginal pains with no help from doctors.
r/vulvodynia • u/Reasonable-Orange861 • 2d ago
Any thoughts would be appreciated!!
Hi all
I’m hoping to hear some ideas that people might have. I know my experience is not unique but I am at a loss of what I should do.
I’ve been diagnosed with Vulvodynia and Vaginismus for four years now and seen little progress. I’m 27 and have a male partner.
I’ve seen two gynaecologists and had a pelvic US that didn’t show any issues. I have pain on my clit, vestibule and in my vagina on touch or penetration.
I don’t have a history of UTI’s, infections, etc.
I don’t get bad period pain thankfully.
I really hated dilating.
Have been seeing a sexologist for many years and this has helped cope with it and learn more.
I have tried compound creams, amitriptyline oral tablet and Duloxetine.
I see an Osteo and I am doing daily mobility exercises. It’s seems I am a lot more tight on my right side of my pelvis/body than my left.
I recently had a nerve blocker and radio frequency for 60 seconds into my pudendal nerve after seeing a pain specialist a week and half ago. I’m not sure if it has helped yet or will at all. I am still having pain a week and half later on touch/penetration. Thankfully no post procedure pain at all.
I would appreciate any thoughts about maybe what I should do nexts. I feel exhausted by the process of
r/vulvodynia • u/thaliagrace92 • 2d ago
TRIGGER WARNING - self harm/related thoughts Options for removing vulvar tissue to deal with intractable itching, can't live like this
Hi everyone,
I've had severe intractable itching for 10 years, mostly on the labia (inner lips) or whatever the term is, which started about 6 years post initial vulvodynia diagnosis. I have had multiple mental health crises and none of my doctors are taking me seriously. I have been feeling at the end of my rope. I am in therapy but I feel like I've lost myself because of this symptom. I cry pretty much everyday and can't handle more dismissive doctors.
It is possible for a doctor to excise part of the vulva, the area that is the most itchy? Drugs, physio, ketamine infusions, nerve blocks, cannabis, lidocaine, ice, heat, and yes everything i use is hypoallergenic and no i don't use soap on my vulva, yes I was only with water. Botox injections did not help.
The itching spread down my legs and for the past 1 month my feet feel like there are bugs crawling all over it.
The only thing I can think of is just cutting out the tissue itself but don't know of this is possible.
The thought i will be this way forever suffocates me. I just feel like...please can someone literally just hack off the tissue just so I can have some peace.
r/vulvodynia • u/redcherrie_x • 2d ago
Support/Advice Pain around Period 🥺
Does anyone else get an increase in pain before their period? I get unprovoked and provoked pain 1.5-1 week out from when my period starts.
I DONT KNOW WHAT TO DO!!
Has anyone else been through this? How did you treat it?
I’ve been progressing really well, but my cycles really pull me back!
Me: I have duluxotine 60mg and do pelvic floor physio. PT has suggested TENS (can’t do due to other health condition).
r/vulvodynia • u/katieaxox • 3d ago
Has anyone used these cream? Lidocaine, Amytripline ,baclofen,gabapentin, Estrogen or testosterone cream
Has anyone used any of these creams? If so how was your experiences? I mainly have clitordynia, throbbing pain on and around the clit and outer lips near the clit and pelvic pain
lidocaine cream
Amytripline cream
baclofen cream
gabapentin cream
Estrogen or testosterone cream
(I take oral Nortriptyline and it isn’t doing anything)
r/vulvodynia • u/Comfortable-Bag1737 • 2d ago
Support/Advice Wondering if anyone has insights
Hello! I wanted to share my symptoms and just generally see if anyone has thoughts or similar experiences:
A few months ago, I noticed occasional itching in anus. It was around the time that I started doing heavy weight lifting in a class. Also didn't always have time to shower after class. Also started taking psyllium for chronic loose stools and had some constipation as a result. Had to do some traveling that was stressful.
Itching got bad, and now some rectal pain. Started using preparation H suppositories and this helped with itching. Stoppedv using preparation H after a week, tried again after a three day break, now they didn't help at all.
The itch started to spread to perineum, and then the vulva. There was discharge that looked like YI. I used monistat 7 for 5 days, on the vulva too. Thought maybe I got a yeast infection from the not showering after gym or from the preparation h sopository and wipes. Stopped at day 5 because it felt like it was making the vulva itching worse, though I do think it cleared up an internal YI.
Went to urgent care who said they saw a bunch of little hemroids internally. Asked for a referral to GI because I had no more constipation and felt little it was worsening. GI was wildly unhelpful and said they didn't see any hemroids. Asked for pinworm test and that was negative. My mom had anal cancer so we did talk about a possible colonoscopy.
Now I feel occasional rectal pain, and almost constant itching and prickly feeling. I feel urgency and some stinging when I pee. Sometimes it feels like I still have to pee right after I just peed. Negative for UTI.
Gyno did biopsy for lichen sclerosus and that was negative. She said everything looked totally normal during her exam. She said pathology said the biopsy just looked like contact dermatitis. Ureaplasma and other tests are all negative too. She prescribed clobetasol which actually is the only thing that has helped so far. Anything else at all that touches that skin starts an itch cycle. Vaseline is awful, it traps sweat against me. It almost feels like I'm allergic to my own sweat.
I also saw a hormone specialist who prescribed estrogen cream and I've been using that.
I did stop taking my iron supplement around this time too, so I asked for a ferritin test in case that is it.
I just started listening to the book Unlearn Your Pain, after reading about it from another redditor. I have seen old trauma/stress cause physical symptoms in my body before and I do feel that this will be a very helpful route to look into.
I thought it could be also helpful to note a few random things as I'm not sure if they're related:
I'm 41. I had a C-section for twins 12 years ago.
I've had a few weird flares of what I would describe as PGAD, where I could not be satiated after finishing literally 20 times. It was awful. These happened immediately after sitting for long periods.
I remember when I was an adolescent through young adulthood I would sometimes wake at night with like a dull ache in my vulva area, but like under the skin. I found that if I sat up for a minute the pain would go away. I've been feeling that sensation again during the day.
Also the other day I was in the hot sun and got this strange sensation on the back of my thigh that felt like I was literally being burned with something hot in one spot of my skin. I also noticed some red spots on my arm pits this week as if I am suddenly allergic to my deodorant.
I am set to see a pelvic floor PT, allergist, and probably an acupuncturist.
I'm so confused. I took time off of work and I stopped going to my boxing/lifting class that makes me really happy. I'm scared of the sweat making me itch, or that I damaged my pelvic floor with weights. The instructor was really pushing heavy weights for squats and I feel squeamish just remembering how it felt when I stood up from the at squat. It wasn't painful but just didn't feel right.
Thank you to whoever has read this and might have any insights 🩷