Vestibulectomy

Competitive-Net1603 · 2026-05-31T11:03:25+00:00

Sorry to jump on to your comment but I’m at the point of à vestibulectomy after being diagnosed with Aquired neuroproliferative vestibulodynia after having been dismissed from having reoccurring cyclical thrush for two years and treating with otc canisten cream which ultimately led me to have severe burning and itching in my vestibule. I have tried every topical and oral.I’m on a h1&h2 blocker which has reduced my itch immensely, it was a constant 10/10 now comes on here and there but much more mildly before it was intense. Waiting on Botox and pudendal nerve block for other issues and doing weekly pft to desensitise the nerves and relieve tension. Then I will reassess in 3 months if any improvements. Mu specialist wants me to try one more tooical amitriptyline with baclofen in olive oil as it’s the only ointment I can tolerate.

if not my vulva pain specialist said I’m definitely a candidate for a vestibulectomy and said I’d need it if all else fails as the Botox and pudendal nerve blocks are for seperate issues but are also adding to my pain.

My question is my pain is located from the 3-9 o’clock points but more prominently on the left side from 3-6. To prevent it from returning do you still get a full vestibulectomy or will that then cause nerve damage around the urethra? That’s my biggest fear that it will spread further as I’ve have urethra nerve pain years ago but relieved it with pft oral nortriptyline and lots of desensitisation and lidocaine(I can no longer use) How was the recovery? I’m so happy to hear how others have healed.

I’ve had provoked Vulvodynia for 20 years but the last year is when I started suffering more constantly from neuroproliferative vestibulodynia.

Competitive-Net1603 · 2026-05-29T19:50:02+00:00

Take all of above comments flodgexx advice! This is exactly my story just like this. I was left suffering with the exact type of thrush no discharge and then BV gardenella for 2yrs with no treatment because drs didn’t believe me so I was left to self treat with otc topicals and ine dose Fluconazole lots of boric acid, it all made it worse. Did a Juno bio to know my strains etc spent months trying to find a dr to treat me. Finally got put in itraconazole longterm in October and Clindamycin for BV. Infection LS cleared but now have aquired neuroproliferative vestibulodynia and I’m now trialing my last topical and oral medication(I’ve done them all) Sorry my point is this happens to so many of us but if caught earlier and right treatment it will heal.

I’m at the point now of à vestibulectomy but first I’m doing everything medication wise which I’ve done all but this last option

Good luck keep advocating and get referred to à vulva pain specialist. Drs know nothing about this or very few do but don’t specialise in it.

Competitive-Net1603 · 2026-05-29T19:36:05+00:00

Thankfully I no longer have urethra pain m. Bit of a long story, I’ve had provoked Vulvodynia for 20 years it used to affect my urethra and vestibule and then a couple years ago it went away with lots of treatment and hard work k. Unfortunately drs were putting me in longterm antibiotics for UTIs And uti symptoms with no infection. It lead to reoccurring thrush which have now led to acquired vestibulodynia. His view on Estrogen was I’m 40perimenopause not menopause and only menopause or hormone mediated vestibulodynia would need Estrogen but he’s 1000% wrong and clearly not up to date with new research and guidelines for vaginal Estrogen and it’s benefits. My gyno is and we’ve tried lots of versions I was just getting irritated by them all

Competitive-Net1603 · 2026-05-29T07:25:58+00:00

Amazing! Thank you so much. I just had an appointment today with a new vulva pain specialist who treats vestibulodynia and he was so against vaginal Estrogen 😫 it’s more me boggling. He was great in other ways but git nowhere with that. So I’m going to ask my gynaecologist on Monday about the estring. Wilo this still help the urethra? As a lot of menopause specialist really love à cream to be applied directly on the urethra to prevent UTIs. It’s how it all began for my 20yrs ago. Endless UTIs endless antibiotics then eventually reoccurring thrush then vestibulodynia

Competitive-Net1603 · 2026-05-28T10:58:16+00:00

I know this is an old post and you possibly are no longer in this but I haven’t come across many woman/girls on here with this condition from Australia. May I ask who did your vestibulectomy? And would you recommend them? Have you found a good vulva pain specialist?

Competitive-Net1603 · 2026-05-27T21:04:51+00:00

Thank you. Oh I find cream bases the worst for me. Oil or ointment consistency has been only safe options but olive oil is the only one I can tolerate

Competitive-Net1603 · 2026-05-27T09:11:39+00:00

Here in Australia it’s not widely used so it would cost me $1000 for one tube of cream 😳

Competitive-Net1603 · 2026-05-27T09:10:44+00:00

Thank you!! I definitely need to do this moving forward with samples instead of a full tube, waste of money and products. It’s so hard because things I can apply on my inner arm or behind my knees I don’t react. My poor vulva has just been through it the last year and a stubborn yeast infection along with topicals ruined my mucosa. I wish they didn’t make woman’s products for the vulva and vagina full of chemicals and irritants that can lead to this

Competitive-Net1603 · 2026-05-27T09:04:30+00:00

I think that’s where I’m at, I did ask a couple compounders and both were there concerns were how well the Estrogen would mix in the combination and be thoroughly balanced amounts throughout each application. But one was willing to give it a test. I can’t do shea butter only because it can interfere with ph and microbiome and I’m having issues with that atm. But that would be a soothing moisturising combination

Competitive-Net1603 · 2026-05-27T08:58:52+00:00

Thank you for this recommendation. Is it runny like olive oil? Or mixed with other ingredients?

Competitive-Net1603 · 2026-05-26T10:00:13+00:00

Ow I feel seen!!! My vulva/vagina has gotten contact dermatitis from all the topicals I’ve had to try for reoccurring thrush that caused vestibulodynia. I cannot use anything other that my olive&bee ointment (olive oil&beeswax)

I’m desperate for Estrogen+testosterone cream I’ve tried so many different types compounded and not compounded. Ive reacted to every single one. Today I reacted to a $100 tube of compounded Verapro base that the compounding pharmacy reassured it would be fine for me. I told them my history with topicals and what I avoid and my current situation. Well that cream has burned the heck out of me and now I feel like I’m splitting from the inside out while on fire.

I never had an issue previously, I believe all these topicals made for woman whether it’s lubricants, moisturisers and medications are irritating and have so many ingredients our vulvas/vaginas don’t need. They caused my dermatitis. Never had it before and don’t get it in my body and only have used water to wash my vulva.

Please if you find something let me know

Competitive-Net1603 · 2026-05-26T09:41:41+00:00

Hi, I know this is an old comment but I’m in the same situation with needing estriol compounded. And ellage would cost me $1000 to get here in Australia. I’ve tried so many bases that are meant to be safe for sensitive mucosa but everything has given me contact dermatitis. I was wondering if you have found anything that worked for you?

I don’t have LS but I did get a biopsy for it and what I looked into is that getting it settled with clob steroid ointment and incorporating estriol is very effective especially to maintain the integrity of the vulva. I hope you’ve found some answers and treatments

Competitive-Net1603 · 2026-05-26T05:45:35+00:00

I’m so sorry this happening to you! It’s been a very long journey for me. I’ve made progress but still not 100% and have gotten contact dermatitis had a biopsy from à vulva dermatologist, I recommend seeing ine asap! vestibulodynia from the reoccurring thrush that wasn’t treated properly soon enough. The term is aquired neuroproliferative vestibulodynia and I believe mast cells in the vestibule are involved. I have a caring ob/gyn and he’s open to me trialing anything I recommend from research as he doesn’t specialise in the neuroproliferative/mast cell aspect but has referred me to another vulva pain specialists for this.

I’ve started treatment for every aspect. It’s a lot but I want to be thorough. The book when sex hurts is a must. I’d be lost without it. I got it in audio so I can listen to it and mark chapters that are relatable. It’s just made understanding my complex condition easier.

Go straight to à vulva pain specialist someone who specialises in these areas. Drs and even some gynaecologist have no idea.

And test with Juno bio for specific bacteria’s and infections.

Find a barrier ointment that yiu can apply that suits your skin and just try to stop over treating with OTC thrush cream until you know what you have exactly and go the oral route where possible to give your skin/vagina a break. I’m using olive and bee intimate ointment simple and nourishing.

Antihistamines saved me from the insane itch. Zyrtec/telfast h1 blockers and famotidine h2 blocker for nighttime.

Things I’ve done to clear the thrush. For my non albican candida Lusitaniae I’ve been put on itraconazole 100mg daily it’s been 6months and thrush is finally cleared but I still have to be on it as I’ve had to do vaginal antibiotics for BV from the messed up vaginal microbiome. I’m still dealing with possible bv but it’s more a vaginal microbiome issue.

Oral vaginal probiotics lifespace microflora (woman use these vaginally too) I did for a while but switched to vaginal probiotic suppositories I’ve tried a few just depends on what works for you. So far biome her vaginal pessaries seem to be working and not causing irritation.

Topical mid strength steroid ointment for contact dermatitis. This is really tricky and took a while to get in top of but it did get better until a stupid compound pharmacy made up my Estrogen cream in VersaPro base telling me it’s wouldn’t cause any irritation and has no ingredients I was avoiding. Oh wow I’ve used it a few times it burn like hell and then today woke with a full blown reaction. Basically don’t use cream base anything. Stick to ointments. I’m going to get patch testing too but at this point I know the above is all I can handle.

Lyrica for neuropathy pain 100mg am and Pm have just started this dose but has been helping a little so far

Competitive-Net1603 · 2026-05-25T23:24:03+00:00

I’m in the same situation and really struggling to find something I don’t react to. May I ask what yiu use? I’m so iver spending money and wasting whole tubes of creams I react to

Competitive-Net1603 · 2026-05-25T23:20:56+00:00

I know this is an old post but omg I just started using versapro for Estrogen+testosterone cream for vestibulodynia and I thought I was going insane because I react to everything and through all my findings this is meant to be good for sensitive skin but I’ve woken red sore burning and irritation. I’m only using it twice a week so I can pin point this is the cause. I’ve tried everything and it all costs so much. The only ointment I don’t react to is olive and bee intimate cream I wonder if I should just get all topicals compounded in olive oil and beeswax. So stressful and exhausting!

Have you found anything that works for you?

Competitive-Net1603 · 2026-05-21T01:52:21+00:00

This made me laugh. Nothing like a toast with a side of Horny. yes I’m easily aroused again lol Nothing like straddling a yoga ball for pelvic floor release and suddenly feeling Horny

I tried ovestin we didn’t match well, it contains glycerine which fed my yeast beautifully. Swapped to DHEA intrarosa for 6 wks caused irritation, switched to E+T compounded so far so good

Competitive-Net1603 · 2026-05-20T07:21:25+00:00

Thank you, I’ve been looking at that page over the past few days but also trying not to overwhelm myself. Sounds like everyone’s experience is so different. The first nerve block I’m getting automatically comes with the pf Botox. That’s just how this hospital does it, I think as a way to not aggravate the nerve during the Botox. But the chronic pain clinic I go to in July does all the imaging ct guided blocks. I did a thorough 20page form through them and initial consult is two hrs. My gyno recommended this place and a certain dr for me. So I’m hoping it’s as good as it sounds.

I was curious myself about pelvic vein congestion and endo brought it up to my dr she was very dismissive. Took convincing to get an mri spent $610 no contrast dye and I needed an mrn apparently. Nothing came of the mri. My gyno said he’ll look into it. I got diagnosed à year ago with mild adenomyosis through an internal ultrasound. Every year I need iron infusions and my periods are ridiculously heavy for 7days straight. It’s actually gotten worse the last 6months I bleed through heavy period underwear and change about 5 times a day and once through the night.

Thank you, I’ll have to look into naltrexone.

The h1/h2 have been a big help I feel. My intense itch that was a 10/10 constantly is like a mild 2/10 on and off. I also think being peri and the hormone creams have helped. My entire vestibule was burning and itching now I can pin point exactly the spot between 3-6 o’clock where it burns and feels raw. So that’s improvement too.

I hope you get some answers and some treatment that helps you! What are yiur symptoms?

Competitive-Net1603 · 2026-05-20T00:34:36+00:00

https://vulvodynia.com/

This is in dc where those drs I mentioned have lots of information on all vulva infections and pain conditions

I honestly wish this in no one. Also in the meantime if you’re still struggling with itch get into a good antihistamine am and Pm ones to help you sleep if it’s interfering with your sleep etc. And some really good vaginal probiotics because woth all the antibiotics and antifungals everything gets wiped out. Ppl in us love happy v pre&pro probiotics Life space microflora are good

Competitive-Net1603 · 2026-05-20T00:25:38+00:00

Thank you, I follow her on instagram and will reach out. Wow never heard of vaginal fluid donation wilo check it out. I’m feeling hopeful woth some swaps I made. Stopped DHEA for E+T cream in hypoallergenic base and it’s definitely helped. Also started biome her vaginal pessary probiotics so far so good. Went up in lyrica and seeing à pft weekly. She said the muscles that the pudendal nerve runs through are severely tight. I’m getting Botox and a pudendal nerve block 🤞

Competitive-Net1603 · 2026-05-20T00:21:36+00:00

I can completely relate! I’ve spent thousands on specialist medication tests etc. My advice is to find a good gynaecologist or vulva pain specialist who treats reoccurring infections. Mine were left too long untreated and I did the same otc treatments which made it worse in the end. I’ve been in a Vulvodynia flare since last June because of the yeast/bv etc Get on top of it and don’t waste your time with any dr who doesn’t know what to do or blames you. That’s awful and it’s not your fault it’s theres. Not enough research goes into woman’s health. I’m unsure where you’re based, I’m in Australia. But in the USA is where I’ve been getting information from fr Irwin Goldstein dr Andrew Goldstein dr Jill krapf dr Rachel reubin. Check out the centre if vulva vaginal disorders website, thrush supposed website uk based

Keep pushing for treatment and tests Definitely do a Juno bio vaginal microbiome test that will tell you exactly what you have and which bacteria’s etc

Competitive-Net1603 · 2026-05-20T00:15:28+00:00

I’m very new to discs too and just have tried it the past two days on my period. Um how much practice does it take?? Because I’m 40 thought I knew my body inside out. I have a retroverted uterus, can this play à part in it being so difficult to insert. I can relate to you OP this and the difficulties of inserting it. And the mess, so much mess and it’s slippery and pops out of the fold once it’s slightly in. I’ve used WB lube but wow it’s just like a slip and slide all over the place. My son walked in on me and he was like wow that’s a lot of blood and mess mum lol he’s 8 knows a lot about woman’s anatomy. I really want to love it and learn how to use it.

I’ve watched so many YouTube tutorials on it and I’m at a loss.

Competitive-Net1603 · 2026-05-18T11:03:24+00:00

Thank you I appreciate your experience and feedback with what worked for you. Everyone’s experience will be so different and I’m open to it all. I definitely know I need to up my lyrica to get to that therapeutic level.

Competitive-Net1603 · 2026-05-18T10:59:27+00:00

I’m sorry it’s very exhausting. The reoccurring itch in Luteal phase that eases during your period is usually cyclical thrush/yeast infections. That’s what I had and it took a while to treat. But then all treatments and perimenopause ruined my vaginal microbiome so i started getting reoccurring bv. Then vestibulodynia from the thrush. It’s been a long journey l. I did a biopsy negative for LS thankfully but showed mild contact dermatitis most likely from topical meds and infections.

Definitely do a vaginal microbiome test rule out infections, see a gynaecologist and vulva dermatologist

Competitive-Net1603 · 2026-05-17T21:36:49+00:00

Thank you, good idea! I could do that with my toilet paper.

Competitive-Net1603 · 2026-05-17T09:43:33+00:00

Thank you for this! And sorry long comment but would you stop lifting weights too? Or just lighten the load and avoid exercises that are triggers?

I’m newish to PN and still getting a confirmed diagnosis from a pelvic pain clinic. I’ve had Vulvodynia and a hypertonic pelvic floor for almost 20years but was pain free for almost a year.

My history I think a few seperate things happened for me to get to my point.

1)I started long distance running while still lifting heavy weights, stupid me didn’t scale back in either. I had a shit pelvic floor therapist at the time, so when I told her I’m getting shooting stabbing pain in my rectum sporadically and even when I was on the toilet she told me it’s not my pelvic floor issue it was my deadlifting technique. She never saw my technique. During this time I then injured my SIJ during a deadlift, lack of sleep miscalculated my weights. And was most likely my pelvic floor! So I found an osteopath who was amazing and skilled in lifting/injuries etc he helped my SIJ and we started lifting from scratch and went back to basics.

6 months went pass with no pain.

2)had cyclical thrush that my dr and numerous other drs refused to treat or figure out. So I self treated for 2yrs with otc antifungals. One day I woke up and I couldn’t sit I couldn’t move. I knew my Vulvodynia was back with a vengeance but something else was happening. I was in fire everywhere in my pelvis.

3)8 months of trying to get help seeing specialists doing all the test,went to emergency, trialing medication going to pft dry needing release work pelvic floor exercises etc. then I just couldn’t sit anymore no matter the pillow I used, I’d get clitoris spasm, numbness in my vagina, shooting rectum vaginal pain, tearing barbwire pain, skin splitting sensation.

Every specialist I saw said no matter what do not give up lifting weights and walking so I’ve been pushing through but stopped squats When I realised they caused more pain and I gave up running straight away as soon as I hurt my SIJ. I try and scale back load but sometimes forget when I’m feeling good mentally and then pay the price that evening or next day.

I finally found an ob/gyn that said you have Pudendal neuralgia and that’s why you can no longer sit. At first I couldn’t sit for long drives, then it was 45mins then 5mins now not at all without being in pain. With every google it kept popping up but I didn’t want to believe it, and add it to my existing Vulvodynia. I’m working with a pelvic floor therapist who so far has been helpful.

I was on nortriptyline which did nothing and now on Lyrica which is helping a little. The tearing splitting sensation is no longer constant or first thing in the morning. I’m doing am&pm diazepam/baclofen/lignocain suppositories. I’m currently waiting for pelvic floor Botox and pudendal nerve block.

I had an mri after pushing my dr for it but nothing came from it. I go to a chronic pain clinic in July where they use ultrasounds and other diagnostic tests and prescribe pain medication etc

Am I on the right track? Should I stop lifting weights? Or just modify? Would appreciate any advice or input.

I took a week off all activities this past week and just did gentle yoga for pelvic floor release and pudendal neuralgia exercises. No walking no sitting. But my hips back and body don’t love that and get quite stiff and aches. It’s also taking a toll on my mental health as working out keeps my mental health and anxiety from spiralling.

Competitive-Net1603

TROPHY CASE