How much did your vestibulectomy with Dr. Irwin Goldstein cost without health insurance? The surgery itself + hospital stay + medication

(I'm not sure if I can afford it)

Hi! I wanted to ask anyone here with vestibulodynia or vestibular pain or simelar what are your experiences from external vibrators on the vulva? How does it feel for you?

I really need help and some understanding regarding my situation. I first got a yeast infection in January (treated with **clotrimazole)**, and then later got another infection (cloteimazole again) and then I was diagnosed with Gardnerella. I was treated for that (I didn’t have a yeast infection at that time, mostly burning and irritation), but on the treatment I developed a severe yeast infection. This time, Canesten didn’t work, and even a single dose of fluconazole didn’t help.

Later, after using a vaginal suppository and taking another fluconazole pill, I tested positive for a yeast infection again. I then completed a fluconazole treatment on days 1, 3, and 7. Right now, I don’t really have the typical discharge that usually comes with a yeast infection, but I still experience intense burning and irritation every day. I feel like I’m going crazy. Sex is painful, and I can’t stop thinking about it all the time. It’s making me really depressed, especially because I’m constantly dealing with burning and pain in such an intimate area every single day.

I have a complex case of Vestibulodynia caused by reoccurring thrush and otc treatments.

for years i had Vulvodynia and never had a problem with lidocaine or severe reactions to topical.

but my situation changed drastically last June since getting what I believe to be aquired neuroproliferative vestibulodynia from reoccurring thrush and inflammation. I believe my hypersensitive nerves and mast cells were set off from this horrific 2yr cycle.

then all the topical medication and lidocaine endless antibiotics antifungals caused contact dermatitis. I react to everything no matter what I get it compounded in.

i need Estrogen+testosterone compounded

ive tried DHEA intrarosa and it caused irritation

VersaPro cream extreme burning splitting sensation itching swelling redness

ovestin Estrogen cream fed the thrus from glycerin and caused irritation burning redness

mi-gel amitriptyline+estrogen burned like I was being set on fire and itch

i can’t even use things like dermeze Vaseline petroleum all burn sting

the only barrier ointment I don’t react to is my olive&bee intimate ointment (olive oul&beeswax)

any recommendation pleas? anyone else have these issues after years of not being reactive?

**to clarify I can’t get elllage base in Australia, it would cost me $1000 because it’s not used here often or known about

hi! i had my vestibulectomy on march 6th of this year and have since gotten two painful suture granulomas that i have had to have removed using silver nitrate. has anybody else had these after their vestibulectomy? the granulomas themselves and the area once removed have been pretty painful and set me back quite a bit in my healing journey. i’m also still dealing with a lot of shooting vestibular pain and urinary pain. i’ve been growing pretty frustrated with the pace of my recovery, and i understand that some things can’t be rushed, but i just want to feel less alone in my experience or see if anybody has any advice on dealing with pain and the feeling of stagnation during recovery.:(

I have been suffering from Hormonally Mediated Vestibulodynia for 10 years, likely triggered by taking a combined estrogen pill and PCOS.  

For years, daily application of a topical estriol ointment provided significant pain relief. However, following a severe PCOS flare-up—a phase during which my estrogen levels were extremely low—the pain intensified permanently to the point where the topical estriol ointment was no longer sufficient. I could no longer sit without pain, wear tight clothing, or ride a bike. To manage this pain, I was prescribed a topical lidocaine ointments (2% and 5%). These caused severe irritation of the vulvar mucosa within a very short time. Since this irritation healed, I have reacted to all topical ointments with severe, long-lasting burning. This also applies to the estriol ointment, without which I have been bedridden for a year now.

All alternative cause- and symptom-based treatments have failed. I fear I have no other option but a complete vestibulectomy.

I know that the surgery has a high success rate. And my dependence on topical estriol for pain relief suggests that my issue is likely superficial and can be resolved by removing the tissue.

I'm still really scared of the procedure. What if it doesn't relieve the pain at all, or not enough? What if the pain gets worse because of the surgery and there's nothing left that can help me?

What has been your experience with a vestibulectomy for Hormonally Mediated Vestibulodynia?

Okay so I red more into this subreddit, and realized that I have something similar, but yet a bit different. I'd only have pain around my urethra, uti like pains, symptoms, all of the above like people here unfortunately had to experience. And some creams that they prescribed me before didn't do much, so im currently 3 days on the capsaicin cream. Torture, oh yeah, but I think it's gotten a little bit better, unless I just haven't had another flare up yet.

But now my question: since capsaicin makes that area less sensitive over time, will it affect sensitivity in my clitoris? I haven't had much desire to try and see if anything changed yet, but this thought won't leave me alone. Does anyone have any experience with this at all? Any resources?

Getting pelvic floor Botox (300 units) in a week, has Botox helped any of your pelvic floor issues? I have neuroproliferative and hormonal vestibulodynia, and was going to get the surgery but was advised against it by 3 drs because I failed the vat/tip test 3 times. I want people’s experience so I can get hope. I don’t have persistent pain, it’s just provoked pain with insertion and with like wearing jeans and stuff. I was never able to put a tampon in without passing out or put a finger in without feeling like I’m being stabbed and itching and burning. Internal pt hurts like crazy still and I tried the e&t cream and ketotifen cream but they gave me cuts at the entrance

Did anybody continue dilator work leading up to surgery? My PT is recommending I still do it, but it just feels like such a chore when I have to be numb and all of that. Just curious if others did and it helped with your recovery?

J’aimerais avoir des avis sur cette opération qui n’est pas très connue … j’ai 19 ans et et je suis atteinte de vestibulodynie depuis mes 15 ans. Cela fait officiellement trois ans que je combat face à ça avec des professionnels spécialisés. Mais je n’ai eu aucun retours sur les post opération, pourquoi une opération a-t-elle été envisagé dans votre cas ? Quelles étaient vos symptômes …etc. Je sais que chaque corps est différent mais j’aimerais avoir des avis des paroles de personnes qui vivent ou qui ont vécues la même chose que moi pour que je puisse en parler avec quelqu’un qui me comprenne pour de vrai.
Depuis décembre on envisage une potentielle opération, mais nous reportons tout les trois mois pour voir les « améliorations » mais bon… cela fait maintenant trois ans et je ne vois aucunes avancées. Alors pourquoi pas valider le fait de se faire opérer ?
Je suis entièrement partante mais j’ai besoin d’avis de personnes qui ont vécues ces douleurs, ces souffrances, cette opération.

Si quelqu’un peut m’aider, m’expliquer, ou même qui a besoin de parler de ça je suis preneuse à 100% et reste ouverte à toutes discussions 💬🥰

Anyone try acupuncture prior to surgery? Any benefits?

Hello! I am writing to invite AFAB (assigned female at birth) people here to a new discord server I have created who have chronic conditions affecting their vulva! This supportive community will be designated as a welcoming community to connect, make new friends and work towards my goal of breaking down the stigma of female genital conditions. I have implemented in a set of rules and will be appointing admins to make sure it will be a safe place for us to vent, share resources, and a laugh or two when we can. This is not for personal gain, and I am not profiting off of this in any way, I genuinely want to provide a supportive space. If you are interested, here is the link: https://discord.gg/NmaVfjCQ8

My vestibular area in particular stings most of the time, but if I can avoid touching it with anything for a while, the pain seems to get better. Is this common or does this point to one thing or another?

Hello, does anyone know if the vestibulectomy surgery Facebook group is still active? I sent a request to join a while back but haven't heard anything. If anyone knows or can point me towards another similar group, I would really appreciate it 💓

Have any of you been to Dr Colin MacNeill in Massachusetts?

What about Dr Mark Conway in New Hampshire?

If so, what was your experience like? What kind of testing did they do, what was their bedside manner like, what kind of treatments did they offer, etc?

I'm looking for help with vulvar thinning/pain after dealing with vulvar eczema, neuroploriferative vestibulodynia, possible hormonally mediated vestibulodynia, and internal numbness. I'm very seriously considering a vestibulectomy as well.

I have been dealing with pain around the vaginal entrance (internally) for a few years now. I am 26 years old. Previously, I had no issue as far as pain during intercourse. I have been on the pill for 8 years (levonorgestrel 0.15 mg-ethinyl estradiol 30 mcg). When I went in for an annual pap (my first & very very late I know), I informed my NP that I was having pain during intercourse. She said, "good news!, I can fix it." and prescribed estradiol 0.01% (1g weekly) and said it was vaginal dryness from being on the pill. That has not seemed to be the case and this has not helped the pain. She did not ask about bleeding afterwards (which I do have). The bleeding is very light, and from my research is likely due to posterior fourchette tearing. The pain I have during intercourse is worst at 6 o'clock but is felt from 3 o'clock all the way to 9 o'clock. And the pain is pretty severe, and I often bite down on a blanket during intercourse. The pain can subside after a few minutes, but not always.

I have a follow up with the same provider in a few weeks and called today to confirm my appt time, and that with my further research of my symptoms, to ask if the NP would be suitable to treat this or if there was someone in the office that would be better for me to see. The nurse was pretty dismissive and said it was my choice and that the NP could treat the issues I am having.

What all hoops did you have to jump through to get diagnosed, and what do you recommend? Has anyone had a similar experience and/or symptoms? Considering I am speculating and do not have a formal diagnosis of vestibulodynia yet, if anyone has any advice or thoughts I am all ears.

Anyone here on the topical ketotifen trial? How has it gone so far, and have things like an anti-inflammatory diet helped you?

I've noticed that around my period my symptoms are worse

I'm 25F. I've had vestibule pain for as long as I remember, never been able to have penetrative sex. I've also never used any form of hormonal birth control. I'm currently trying to figure out what my vestibulodynia might be caused by, with my PT.

My pain is located in some spots in the vestibule around the vagina - largely between 3 and 9 o clock. The pain feels sharp and stinging, almost like a raw burning pain, 9/10 at its worst. I've been given desensitisation vestibular massage exercises - to gently touch the area with lube & do diaphragmatic breathing to get the area "used to touch". I've been doing this for 1-2 months with no real improvement.

I recently tried doing the massage/touch exercises on the painful spots while using a vibrator with my other hand to get myself aroused. Essentially distracting myself from the pain with pleasure. I was really surprised that it actually kinda worked? The area still felt super sensitive but it was not really as painful - it dropped from a 9/10 to maybe a 4/10. The pain also significantly went down for a while after an orgasm - so the whole area was much less painful. But the next time I tried the massage (unaroused, with lube) the pain was back to a stinging 9/10 pain.

Is this a common experience? I'm trying to understand whether this might be a pelvic floor issue or a neuroproliferative pain issue? Open to any thoughts!! Thank you!

For the first 4 years of my sex life I had completely pain-free sex. Then suddenly I started getting pain specifically at the vaginal entrance during penetration. The pain feels like a sharp stinging / “paper cut” sensation, especially when the opening stretches downward. Sometimes even the tip causes the sting. If penetration continues and gets past the entrance, it can feel more tolerable, but afterward the area burns/aches for 1–2 days, especially when I pee.

Recently I tried having sex again after years without intercourse and had slight bleeding near the perineum/vaginal entrance after attempting penetration.

Important details:
I still get naturally lubricated
Thin/smaller objects are usually easier and can fully insert
The pain is mostly localized to the entrance (sometimes more on the left side)
I don’t usually have pain randomly during the day
I don’t really have itching or abnormal discharge
I can tolerate deeper penetration more than initial entry/stretching

I’m wondering if this sounds like:
provoked vestibulodynia / vulvodynia
pelvic floor tension
recurrent fissures
or something else?
Has anyone experienced something similar and improved?

Hi all! Has anyone had continued urethra sensitivity when using dilators after surgery? Also, urgency? These were symptoms pre-vestibulectomy and while the surgery was successful, these have yet to dissipate. I’ve been told they’ll go down with time, but would like to hear firsthand stories. Thanks 🙏🏻

I bought lidocaine 4% from Good Clean Love to see if it could help with pain at my vestibule and inner labia. I tried it just now at the vestibule and all it's done is cause burning.

Is this normal? Could I be allergic? Lidocaine is supposed to numb the area, but it's only made me feel worse.

Unfortunately, my European health insurance does not cover the cost of surgery in the US. However, as I cannot find a doctor in Europe who can perform a vestibulectomy in the 12 o’clock area, I suppose I have no choice but to come to the US and cover the costs myself. May I ask how much your procedures cost?

I’m currently on 50mg of Nortriptyline and it’s doing nothing. I can move up the dosage, but not sure if I should. For any of you, did it slowly get better or did you find a dosage that worked all of a sudden? I hope that question makes sense. I’ve tried gabapentin and it did nothing too. My doctor said my other options are duloxetine (cymbalta), pregabalin (lyrica), and amitriptyline (elavil).