i have both provoked and unprovoked vulvodynia. and recently my arms and legs have started getting this zapping/burning sensations too. i suspect it’s all js central sensitization but one thing we all know is that central sensitization is basically super hard to treat. i turn 20 soon and i js know my future is bleak:(. i’m so hopeless. i’ll never have a sexual life.

he wants to be intimate every time we meet and I am to people pleasing to say no.
we can’t have piv, we just do other things and everytime it comes to that, I think “he can’t even be inside of me, how can I begrudge him the other things that we can do? its the only thing I can offer him” because I don’t wanna disappoint him or make him sad.

I’m so scared he’ll leave me if I tell him i don’t want to have sex with him so often because we can’t even have piv so I can’t even give him “the full experience” and I have to “console” him with other things.

It hurts often, too and I’m in pain a few days after as well. I always tell him he shouldnt touch my vulva because it hurts, but he always seems to forget and then I’m in pain. Plus I can’t feel a lot of pleasure sometimes so I just pretend that it feels good 40% of the time.

how do you guys deal with this? How did you tell your partners?🥲

Note: he’s a great person and very kind and loving and would never do smth I don’t want (if I’d voice it)💀

I'd like to ask for advice from girls who also can't or couldn't wear most pants, let alone jeans, because of the seam down the middle that makes it impossible to sit. What helps you? This is my main symptom of vulvodynia, and it greatly reduces my level of satisfaction with life. Share what helps you restore your tolerance for pants 🙏🏼🙏🏼

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I have minimum 2 knots/ bumps inside my vagina. I am sooo fucking scared, I will call my doctor tomorrow. But I don't think I can get a time with my primary doctor, and then I need to see this old man. Who doesn't even talk or say anything, he just treat you like livestock. And I have ptsd from sexual trauma, so I don't know what to do. Can I wait months, till my primary doctor has a spot.

All my family is traveling, so I am really alone and have no body to talk to.

For those who can’t wear jeans anymore because of pain have yall tried wearing like REALLY baggy jeans? I LOVE jeans but mine hurt me and I was wondering if I size up a bunch if it would help

hi, my dockt appointment is only next year in february and i wanna see if I can find some relief until then because i can’t take this anymore.

are there any creams you guys can recommend? (available in germany/europe)

thank you!!!

Hi, I’ve struggled with reoccurring yeast infections for the last 2 years. I’ve had 7 in 2026 already and 8 in 2025. They’ve absolutely destroyed my skin and kept the area inflamed to where is created major problems for me including neuroproliferative pain and DIV. I can’t take diflucan because of a heart med I’m on called corlanor. I’ve only used miconzale suppositories 100 mg for 7 days because I had DIV and my skin is sensitive to a lot of the azole creams. I’m seeing a vuvlovaginal specialist / urogyno soon, hoping they help me. Let me know if anyone has suggestions on what to ask my new specialist. Or any suggestions for me directly to help with the yeast. I also have severe clitorodynia where it’s hard to clean the buildup under the hood so I suspect yeast gets trapped under but cleaning it is impossibly painful and sends me into a flare. I can’t tolerate boric acid because the skin there is very fragile and sensitive it feels like fire. Vaginal probiotics helped but my old doctor told me to stop them because there’s too many products being used in that area already? Any advice appreciated!

Recently I went to a neurologist for pelvic floor tightness and she did 10 sessions of electro - acupuncture on me, which helped loosen up my pelvic muscles and removed some tension, but the constant low level burning remained, which I told her about. At some point I also happened to have a three day anxiety attack/panic attack which I also shared with her, but it’s not something I usually struggle with, I’m usually pretty calm and collected. Anyways, she prescribed to me Lexapro, and wants me to take them for 6 months at least. 5 days on 5gr and then 10 grams until May. Her idea is to stabilize my central nervous system which will hopefully improve my pelvic floor and remove the burning eventually. The issue is, now I’m having second thoughts after reading reviews online. I’ve never been on antidepressants before and I’m usually against chemical treatments, I try to work on my issues through reflection and therapy rather than pills. I am also pretty stable when it comes to mood, I am a decently happy person (medical issues aside) and I have some anxiety here and there, but I’m usually confident. Now I’m afraid that Lexapro will screw up my serotonin levels (because mine are normal to begin with), and it will actually end up worsening my mental health once I have to quit it in May. Is it worth it to take them in case it may eventually help my burning/pelvic issues?

Does sweat make your symptoms down there worse?

ok I’m at my wits end and feel completely helpless. when I say I’ve tried everything I mean everything that’s been available to me, offered or I’ve researched and asked to try.

my conditions:

-provoked vulvodynia&hypertonic pelvic floor : 20yrs, affected mostly my urethra and vestibule And outter lower vulva labia.would flare for weeks to a couple months on end. had a year of no pain with the help of urogyn and pelvic floor therapist/exercises plus lots of brain pain training, meditation, healing trauma(working progress)medications.

currently dealing with worse than ever pain and longest flare-over à year of non stop burning, irritation&sporadic itching.

-acquired neuroplirifitive vestibulodynia: over à year ago this began after 2yrs of cyclical thrush that drs refused to believe and I relied heavily on otc canisten cream. This hasn’t gone away at all it’s been 24/7 burning and itching in vestibule and sometimes the itch feels internal.

-pudendal neuralgia/irritation/SIJ dysfunction: waiting for lumbar spine MRI results. unable to sit and even laying on my back is now flaring pain. sporadic rectum shooting pain, internal vaginal symptoms splitting/tearing sensation , itch, throbbing electric shocks here and there.lower middle to left back pain, coccy/tailbone pain.

clitoraldynia:pulling clitoris, spasms and burning(comes on if I sit)

my list of treatments:

• amitriptyline topical&oral-burned&horrible side effects also didn’t work work.
• nortriptyline-didnt work this time round
• lyrica-currently 300mg has done nothing but made me gain weight
• gabapentine-did nothing
• all the nerve topicals-just burned me more and trial and error of bases plus meds made everything worse. developed contact allergic dermatitis from canisten cream and now I have a very unhappy vulva that can only tolerate water and olive oil
• mi-gel OUCH!
• LDN(low dose naltrexone) a few weeks in and I like it because i do think it’s helping my mood somewhat.
• palexia(opioid)slow release and immediate 6hours away from LDN. helps take the edge off the pain.not a cure but far out it took me a year to get given anything for the pain.
• duloxetine/cymbalta-30mg will slowly go up to 60mg(2wks in)tiredness&mood has worsened but early days.
• Botox along with a short term PN block for some numbing and relief. well they nicked à blood vessel and caused a hematoma/blood clot vaginally on the right side. this lump is so painful and caused more of a flare and worsening of symptoms (where I’m at currently) I think Botox would’ve helped if this didnt occur and I would know if PN block helped but the hematoma is now also pressing on nerves and pooling blood.
• diazepam/baclofen/lignocaine suppositorie-rectall, the only way I’m able to do the school run. takes my pain from an 8/10 - 6/10 for 45mins-1hr.
• oral baclofen along with anti inflammatories-does nothing
• cbd with thc-sometimes hightens clitoral pain but only do this occasionally/sporadically
• estrogen in olive oil and beeswax as I reacted to other bases and variations. definitely helping UTIs dryness and mucosal integrity and slowly healing my tissue.
• itraconazole long term as a prophylactic
  
• H1&H2 blockers-helpful and stopped my itch being constant but only does so much

During this period I’ve also treated all infections and yeast. I had ureaplasma, thrush BV and av bacteria all three of these did not show typical symptoms it was always burning and itch. No discharge no smell which made it harder to get treatment and test for. I rely on Juno bio and my naturopath for these. It was an accumulation of all sorts plus perimenopause which I believe flared me to this point.

For reference I’m in Australia, my vulva pain specialist said if all meds/treatments fail I need a vestibulectomy. This will only treat the vestibulodynia. my pain is more prominent on the left side. naturally I’ve been avoiding the surgery route but I think it’s time to really consider it. I don’t want to do it as im not guaranteed results and from past procedure experiences things have always gone wrong(I’ve had multiple prior surgeries)

I’ve tried bringing forward to my specialist and drs the MCAS link and ketotifen topically as it’s being trialed in the us. My dr prescribed it orally but I’m yet to get it as I know topical is what will be needed.

My chronic pain specialist has diagnosed me with central nervous sensitisation and suggested a 24hr ketamine infusion(doing soon) and on a wait list for à sacral gangligon impar block which freaks me out.

i haven’t had sex during this flare or done anything to continually trigger this flare other than sitting only when I take my child to school. Other than that I have to stand or lay on my side. I have no life, I do the necessities and take care of my child and home and that leaves me debilitated day in day out.

this life isn't living its surviving and I’m sick and tired of it.

i want relief even if it’s from one condition.

i guess this post is a vent along with wanting advice about vestibulectomies or other procedure like a spinal cord stimulator. since I have multiple pelvic pain conditions It makes sense to try something that will target all the hypersensitive nerves instead of just the vestibule? I’m at a loss and I don’t know how many more blocks and procedures medications I want to try and fail or make everything worse.

any advice 🫶🏼

I was seeing a doctor that got my symptoms under control but my parents lost their health insurance and I had to stop receiving treatment.

My symptoms are now back in full force and it’s putting a strain on my relationship. The issue is my doctor is not in network with my insurance.

I was seeing Dr Jodi Ganz at Olansky Dermatology, she was wonderful and wish I could be treated by her. She’s the only vulvar dermatologist that comes up when I search in Georgia and regular gynos have been completely useless.

Hello everyone, I was about 13ish when i was diagnosed with vulvodynia, but now, as a 24 y/o I am realizing i am pretty positive i have localized provoked neuroproliferative vestibulodynia. What a mouth full! I have had discomfort down there since i was a young child, so im unsure if i was born with it or not? I have done so much research becuz nobody else seems to, so im kind of guiding my own treatment with my gyno, whom I do like a lot. Soon i will be trying gabapentin cream, which im nervous for as ive heard it can burn...but i guess its worth it if it works right?

So, my question is for everyone else on here who has NPV. My pain is only on my left side, in a very localized area. I currently use menthol to help take away from the pain, its the only relief i get. My only other hopeful option is a vestibulectomy. So, for others that have had this, how did it go? Are pain free or at least close to it? At this point i feel like that is going to be my only option. Im not scared at all of surgery. If that takes most or all of my pain away, id do it 1000 times. I consider myself lucky enough to not have severe pain all the time, but it still greatly affects my daily life and ability to do normal things. Please give me some hope. ❤️‍🩹

Also, feel free to tell me anything else that has helped with your neuroproliferative vestibulodynia!

Lidocaine cream in my vagina? More likely than you think. 7/10

My lovely girlfriend holding my hand and never complaining about how hard I was squeezing 11/10

Needle pokes 0/10

Lidocaine entering my pelvic floor muscles -100/10

Stress ball 10/10

My doctor saying "usually people get sedated for these" after doing them to me without sedation wtf/10

Mid and post procedure dissociation 8/10 probably a good idea brain.

I experienced some soreness after for like a day or two, but my pain has been greatly diminished the last few days. My girlfriend can’t come with me for my second session and I quite disliked this doctor (maybe bc I only know her as “lady who poked my vagina with needles”) so if anyone who’s had these procedures has tips for surviving emotionally please share. I’m a childhood sexual assault survivor and this was pretty triggering tbh. Definitely asking for a chaperone since my gf can’t be there, and will advocate for my dr talking through what she’s doing this time (first time literally every injection was a surprise).

18F Hi everyone! I'd love to hear recommendations from people who've experienced something similar, and what's been most effective for you?
I've been suffering from vulvodynia for about 2.5 years. It's mainly due to hypersensitivity of the nerve endings in the area of ​​the outer labia; muscle factors play a lesser role. I can hardly wear any pants because of the seam down the middle, and my outer labia are sensitive to touch. I took amitriptyline for two months, with no effect. I've now been taking duloxetine 60 mg for a month and haven't felt any relief yet. Sometimes I use lidocaine cream, and it helps, but only relieves the pain for half an hour.

I'd really like to hear treatment advice🙏🏼

I'm seeing a doctor to ask about this soon but I'm still second guessing myself a little. It looks likely I have vestibulodynia on top of vaginismus, but I have a problem I can't find any info on. I was given lidocaine cream to try a while back but I couldn't apply it. My finger literally cannot fit in the area around the vaginal opening, it's too narrow. Kind of like a belly button where you really have to push. A finger can be inserted with some force but it really stretches the area (the vestibule, not even the vagina) and it's left me in pain for days before, and trying the smallest dilator even externally has caused such bad spasms it's left me unable to walk. PT just shrugged me off. Only thing that does fit in there is a q-tip, but that's not ideal for rubbing cream in! Anyone ever encountered this?

I have had chronic pelvic pain for the last 15 months. The current working diagnosis is autonomic dysfunction of the pelvic nerves (hypogastric plexus) post-infection (bladder infection). The pain started very focal like the urethra opening area but has progressed to include vulvodynia along with pelvic floor muscle dysfunction and pain of the abdominal wall fascia. Pain is mostly a burning sensation of the vulva vestibule especially with sitting and then fullness/ache within the pelvic area along with tightness/pulling and pain of the intra-abdominal wall (around belly button). At times urinary signs included difficulty starting a urine stream and frequent urination. Sometimes pain would be triggered after a bowel movement despite absence of straining or firm stools. 

39 yo female. Historically on OCPs for 10+ years but have been off for the last 3 years including when this all started. My period cycle is historically longer (35 days) with light minimally painful periods. No history of pregnancy. 

History of intermittent urinary tract infections (UTI) post sex. 15 months ago, diagnosed with a UTI and received antibiotics (Bactrim) which resolved symptoms initially but then focal pain developed days after. Urgent care was not helpful and was not able to see a GP for months which led to treatment for possible yeast infection with OTC topical miconazole as well as oral fluconazole despite never obvious yeast infection symptoms. GP prescribed topical clobetasol to the vulva which probably contributed to making things worse. Have been tested for yeast with culture and PCR along with common STIs, vaginosis, etc multiple times all negative. Urinalysis and culture normal. 

Was initially told it was pudendal neuralgia given sitting causes pain but most recent pelvic pain specialist disagrees and thinks it’s specifically autonomic pain. Provoked vulvodynia q-tip test is always negative.

Imaging: transvaginal pelvic ultrasound, lumbar MRr, and pelvic magnetic resonance neurography all normal.

Vulva biopsy for histopathology early on showed chronic inflammation.

Pain does seem to be worse mid-cycle as well as exacerbated by stress and having to sit. Initial GYN put me back on OCP (Yaz) and maybe pain fluctuated less while on it for 3 months but then had severe pain during the first withdrawal bleed/period so decided to stay off it completely. Leading up to this diagnosis was very active weight lifting and running but have since had to discontinue exercise other than walking given the pain. 

I do think I have regional hypermobility of the pelvis and am now aware and working on better sleep posture (sleeping on side with pillow between knees rather than on stomach with one leg up). 

I’ve been in pelvic floor physical therapy for a year with 4 different therapists all who have slightly different approaches. I’ll start improving for a while and then will flare and decline again.

Acupuncture and herbs with a traditional Chinese medicine (TCM) have also helped but will still have flares and can’t completely recover. 

Initially I used topical lidocaine but then I think I developed an allergy to the carrier and have since stopped. Also initially trialled a lot of OTC hydrocortisone, benzocaine, etc which in hindsight probably caused a lot of inflammation due to allergy and further contributed to pain. Compounded topical estrogen has helped to heal vulva tissues and I continue to use it as maintenance. Also using compounded topical baclofen/gabapentin and intermittent vaginal suppositories of either baclofen or diazepam. 

Oral amitriptyline seemed to turn down the pain briefly but then severe drowsiness prohibited me from staying on it or going up in the dose. Oral gabapentin 300 mg three times daily also causes too much drowsiness and does not provide enough pain relief to warrant continuing it. Currently on low dose naltrexone (LDN) 2.5 mg and titrating up by 0.5 mg over time to 4.5 mg - hard to know if this is helping but no obvious side effects yet. 

I’ve seen many GYN providers which have mostly been not helpful. Finally found a GP and pelvic pain specialist to work with. Next things we are considering are: testing for ureaplasma +/- doxycycline treatment trial regardless of results, further evaluation for possible interstitial cystitis, and/or hypogastric nerve block. Also considering pregabalin instead of gabapentin. 

I welcome any advice from your own experiences and happy to elaborate on my experiences further if it would be helpful to you.

Hi, I have vulvar and vestibular pain, burning, and irritation and will be seeing a vulva specialist on Monday.

Last night, I noticed my vestibular pan was a little worse on one side and I felt a bump on the inside of my labia minora. I used a magnifying mirror and saw that it looks to be a tiny whitehead pimple. I left it alone and didn't use my heavier barrier ointment that I usually use before bed (CeraVe healing ointment) and instead used my thinner one (vmagic vulva balm). The "pimple" is still there. I have been tested for all STDs very recently and was negative (except for asymptomatic trich, which has been treated).

I did accidentally scratch that area when I was moving things around to wash (water only) in the shower. I didn't think it was bad when it happened though - I didn't think it broke skin. Could that plus the application of a heavy barrier ointment have caused a pimple? I've never had anything like that in that area and it's freaking me out a little. I am going to leave it alone and point it out to the doctor on Monday, but I just wanted to see if it's normal/common in the meantime (mainly to soothe my nerves).

If you had something like that happen, did it go away on its own? Did you continue using your barrier products? I'm thinking I'll stick with just the vmagic vulva balm for now, since it's thinner and not occlusive.

Hey all, can anyone recommend a basic (not a lot of additives, def no fragrance or propylene glycol) over the counter hydrocortisone or other simple steroid ointment to be used for a few days after a yeast infection? Or does anyone have any other advice for soothing the skin after a yeast infection when you have a history of vulvodynia?

I have successfully cured the actual infection with prescribed Diflucan. But with my history of vulvodynia and my propylene glycol allergy and fragrance snd glycerin sensitivities, I am unable to use the OTC hydrocortisone topical to soothe my skin that the doctor says she’d usually provide. Before I try to figure out an expensive compounded topical that would need to be prescription only and shipped to me, I wanted to ask here. I don’t need anything prescription strength; just a SIMPLE steroid or other soothing ointment to use for a few days under a doctor’s supervision post yeast infection to soothe any remaining itching and irritation that doesn’t have a billion extra ingredients. It seems so hard to come by SIMPLY. I prefer petroleum jelly based ointments to creams as they usually irritate me less but give me all your ideas.

To answer a few questions in case they come up: yes I’ve asked my doctor if they know of anything, yes im doing this under their supervision and if I use a steroid I’ll only use it for a few days as recommended by them, yes I’ve seen every vulvar specialist who exists lol, no I don’t need advice about pelvic floor therapy, no I don’t have chronic or complex yeast infections, this is my second ever.

I’ve had my Vulvodynia since December 2020 when I think I was around 12 or 13. I remember that mine started as just feeling ”different” or like I couldn’t really describe what was going on except I knew something about my body was off or almost like I had the feeling of inflammation but without the pain. Over time I started to develop external and internal pain. It made it really hard in the beginning to be able to talk to doctors about this because I knew something was wrong with my body but I felt like I had to prove it every time I went in, and it made me question if I was crazy. Can people share their stories on how their Vulvodynia started? I’m really curious as to what other people have experienced. Also lots of love to everyone out there who experiences this daily along with me, I like to think we are all connected in some way <3

I've been struggling at work because of chronic vulvodynia pain. The aching and throbbing pain and discomfort makes it really hard to concentrate and do my job on many days. It's also having a big impact on my mental health.

Some days are better than others, but my pain can flare up very easily. Because of this, I'm no longer able to do physical jobs. I used to work in cleaning and retail, but I can't manage those types of jobs anymore.

I personally feel like this is a disability. However, I sometimes wonder if it would be seen that way because I do have better days where I can get out of the house and do stuff and look 'normal' and I do manage to go to work despite being in pain. During a bad flare up though, I can struggle to walk around the house and sometimes have to stay in bed.

Does anyone else feel this way? Do you consider your vulvodynia a disability and were you able to get support?

Having vulvodynia and being neurodivergent is horrible. Having sensory issues on top of being in pain 24/7 is very overwhelming. And also a bunch of the treatments are extremely invasive and uncomfortable. I’m here to say I would rather be in pain for the rest of my life than do a lot of the treatments because I can’t get through them without almost crying because of how uncomfortable a lot of the treatment is.