r/vestibulodynia

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

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 💬🥰

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.

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 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.

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?

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!

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 🙏🏻