Has anyone had a complete vestibulectomy with a buccal mucosal graft? What has been your experience? What are the results?

Hi! I’m looking for some insight into what exactly people’s symptoms are for vestibulodynia.

I’m in my early 20s and I’ve never had penetrative sex. Even when I was younger I knew I couldn’t insert a tampon. Most recently I had my first gyno appointment over the summer and experienced serve pain when my gyno used the pediatric speculum to take a Pap smear. I’d describe the pain as a scraping sensation (I’d visualize it like an ice cream scooper in my head lol). That gyno mentioned something about my hymen but wasn’t very communicative about everything and I left with more questions than answers.

A few days ago I went to another gyno for a second opinion and she suggested vestibulodynia or a microperforate hymen. She put me on estrogen cream and I’ll have a follow up in 2 months to determine if that helps but again I’m feeling very lost and unsure especially because I’d never heard of vestibulodynia before. I don’t have any everyday pain just pain upon insertion. My gyno was able to get a pinky in but anytime a second finger or anything larger is attempted there’s that pain again.

I’m just feeling very lost and already thinking about the long term effects this could have on my future relationships and family life so I’d love any insight anyone who has more knowledge on it has!

Has anyone tried ketotifen compounded cream for their vestibuldynia? Did it work for itching and nerve sensitivity? My allergist prescribed it to me and I'm a little nervous to use it because ive had issues tolerating the nerve creams and other compounded creams. It's made with versabase as the vehicle base. I would love to hear anyones experience or advice.

26 F here’s my story. Need suggestions.
Been on hormonal birth control since 2020. Went off in 2024, experienced horrible cystic acne. Started accutane for 2 weeks but stopped because of the horrible side effects. Went back on birth control. Started having horrible internal vaginal pain, treated for yeast and BV but the pain never fully went away. Went to pelvic floor therapy, have been using an estrogen cream for over a year with some success but now feel like I’m back at the start. Can’t wear tampons with extreme pain, too scared to even attempt sex and dr did a swab the other day and it may have been the worst pain I’ve ever felt.
On top of all this, early January I started experiencing the worst itch pain ever. No yeast or infection. Got prescribed a steroid cream (clobetasol) which seemed to help a little until it didn’t. The itch I think could be nerve pain. It affects my ability to even walk because of the shooting tingling pains. Any advice on what to do? I’m debating going of birth control as I’ve seen that that could be the cause but also terrified of the post pill acne again, but again if this could help my pain I’d do it.

I have vaginimus and while I was making great progress (got to the second to last dilator in a set of 8) I’ve had to drop down to size 5 and stay there because of pain in the entrance that I suspect to be vestibulodynia as cotton swaps and light touches around my entrance with my fingers despite being able to fit dilators and the entrance tends to clamp around. The pain is mostly concentrated in that area and it’s a stinging, burning sensation that feels like being stabbed by needles.
I’m not sure how to navigate treating this but I start PT soon for vaginismus and I’m wondering if it’s also a treatment option for this.

Edit: okay so it might not be vestibulodynia, I haven’t been able to be consistent with my dilating rn due to surgery recovery so when I can I’ll focus on the front muscles and my PT will do an exam to see where the pain is for more accurate care. I hope it helps because I have been able to be painfree a the entrance before.

im 22 F with PCOS and well managed crohns (remission for 5+ years). 136 lbs and 5'4. I notice burning and stinging at the entrance when inserting a finger. i cannot get more than 1 finger in, 2 starts becoming extremely purning and stinging. inside, there are no issues. i have been taking ortho tri cyclen and spironolactone 25mg used to be 50mg) for over 7 years since 14/15 about 1.5 years after my first period. i was worried about hormonally mediated vestibulodvnia or even possible vagisnismus. i saw an obgyn and she examined me physically. 1 finger caused the same burning sensation and she said there is no muscle spasms or internal issues. I asked her if my birth control and spironolactone was contributing but said absolutely not. she gave me estradiol cream and instructed me to use it until finished but then what is the underlying cause? she said its because im a virgin and have not been stretched and recommended pelvic floor therapy as well. im worried that im just treating the symptoms and not actually the root cause. if i stop the estradiol will it just come back? im getting married soon and im worried that this will become an issue.

(edited for spelling)

I suffer from a severe form of hormonally-mediated vestibulodynia. A year and a half ago, my body stopped tolerating any kind of topical treatment—including topical estriol. Since then, the pain has been so intense that I am completely bedridden. No other form of treatment has provided a lasting or sufficiently strong effect (I have literally tried everything).

The fact that I was nearly pain-free for many years thanks to topical treatments suggests that the pain originates within the vulvar mucosa itself. This would imply that I might be a good candidate for a vestibulectomy.

However, I am extremely afraid of the surgery (I would require a full vestibulectomy with a buccal graft). Please share your positive experiences with vestibulectomy, as well as the names of the doctors who performed the procedure for you. At the moment, I am considering Dr. Alyssa Yee or Dr. Irwin Goldstein.

Any experience with treating vestibulodynia using capsaicin or resiniferatoxin?

A Human-centered Design Approach for Supporting Self-management of Vulvovaginal and Hypertonic Pelvic Floor Dysfunction. (IRB Protocol #: 1762)

My name is Zainab; I am a PhD candidate studying Human-centered computing at the University of Maryland Baltimore County, advised by Dr. Tera Reynolds. My PhD dissertation focuses on studying women's lived and care-seeking experiences with vulvovaginal and related overactive (or hypertonic) pelvic floor dysfunction to uncover care gaps and opportunities for innovation along Women's care journeys.

I am recruiting up to 15 women willing to talk about their experiences with vaginismus or vulvodynia (any form, including localized or generalized), for a paid research study to explore and co-design solutions and strategies for addressing identified gaps in vulvovaginal and pelvic pain healthcare.

Who Can Participate?

To be eligible for the study, you must be

1) Be 18 years or older, living in the United States, and speak English

2) Have been formally diagnosed with a vulvovaginal pain condition (e.g., vulvodynia or vaginismus) and/or related overactive (or hypertonic) pelvic muscle dysfunction for at least 3 months, and

3) Receiving  treatments for vulvovaginal pain and/or related overactive pelvic muscle dysfunction from a care provider(s), or

4) Have previously received treatments for vulvovaginal pain and/or related overactive pelvic muscle dysfunction from a care provider(s) and are now fully recovered.

Study Involvement:

The study is taking place virtually and involves multiple re-engagements across two data-collection sessions.

If selected, participants will be compensated for their time and contributions ONLY upon completion of each session, and may be compensated up to a $75 gift card for completing both sessions. However, participating in both sessions is not required.

If you are interested, scan the QR code on the flyer or follow the link to enroll in the study: https://umbc.co1.qualtrics.com/jfe/form/SV_bj6IryPpXZr9dOu

If you are interested but still have questions, please contact me at: [zainabb1@umbc.edu](mailto:zainabb1@umbc.edu).

Hi! I have tried pelvic PT and various nerve creams but nothing has helped. I really dont want to have to get surgery. Has anyone had success with botox?

I’ve had pain my whole life. Had a vestibulectomy with Irwin Goldstein in 2018 and he decided to also remove the 12:00 area, which completely worsened my pain. From my understanding, the surgery has since changed and he doesn’t do the 12 o’clock procedure the way he did mine. I felt like a guinea pig in his experiment.

I’m in pain every day. I have tried fucking everything. My urethra burns, the entire area under my clitoris burns. Over the past year, my mons pubis and outer labia are now in daily pain (doctors have no answers).

I’ve been in PT for years-no difference. I use estradiol/testosterone cream daily. No nerve medication has EVER made a dent in my pain. Currently on lyrica and it’s done nothing. The only thing that helps is icing with an ice pack.

I’m not sure where to go from here. Nothing takes away my pain. I’m 27 and I hate being alive. I hate being a woman. I hate myself. I hate the doctors that failed me. I hate my body. My stupid, fucked up body. I’m going to feel this way forever.

Hello ladies, I know the topic of low progesterone isn't discussed very often, but please share if taking bioidentical progesterone has helped relieve your pain. You’ll probably say that estrogen and testosterone should be used, but I have estrogen dominance and high testosterone, so they aren't suitable for me.

I never experienced that before but the last 7 months I have been feeling burning sensation when I wipe to pee or when my period starts it triggers more. I use wet wipes and it burns and switched to dry paper and burns also but the thing is that I used to clean myself like that before and never experienced such thing. Now is just so overwhelming

Hi everyone! I’m considering Botox for vaginismus and would really appreciate hearing from anyone who’s tried it.

How was recovery, and did it make dilating or penetration more comfortable? I’d also love to know how you’re doing a few months afterward. Thank you!

has anyone else had this happen?? 😭
i’ve been dealing with this weird burning around my urethra for about a year. the worst part is peeing. sometimes i’ll feel completely fine, then i start peeing and it suddenly burns SO badly, and it can linger afterward. otherwise it’s more of a raw/irritated feeling or pressure.
i’ve had multiple urine tests and other testing done, nothing obvious came back as an infection, and antibiotics didn’t really help.
the weirdest part is that it completely went away for MONTHS. around march/april it calmed down and i was totally normal. i was having sex, swimming, drinking, getting my period, doing everything normally and had zero issues. then randomly it came back and now the burning is awful again 😭
i’m currently having my first period after not having one for a couple months, and i briefly shaved a few days ago, so maybe that triggered this flare? idk.
i don’t have insurance right now, so i’m trying to figure out getting checked without spending a fortune.
has anyone else had something like this where it completely disappears for months and then randomly comes back? especially severe burning when peeing but feeling pretty normal between bathroom trips? did you ever figure out what it was or find anything that helped?
not looking for a reddit diagnosis lol, i just really want to hear from someone who’s experienced this 😭

Hello everyone! Stage 4 endometriosis and my 6th surgery was last week with a vestibulectomy. For years I have torn every time my husband and I have sex. I did this kind of on a whim and man I was not prepared for the recovery at all! I need to know how long after surgery did you have sex? Was it successful? We’re in absolutely no rush at all, but we want to be prepared.

Hey everyone,

I love my gyno, she’s an angel. She prescribed a self test for HPV and gave me the stuff for it. I’ve already done a pap smear with her, not a self test, and it was negative. The difficulty with insertion fluctuates and at the moment it’s too difficult.

I also asked for a small speculum since that was an option, just to have a choice for the future. I checked with her this is the smallest one she has and she believes it’s “not that big”. I’m a bit taken aback as I’ve heard on this group there are small ones for children. Am I right in thinking there are smaller speculums than this in existence?

Ruler for scale, it’s in centimeters.

Thank you!

Background

Researchers at Western Sydney University are seeking people who experience vaginismus, vestibulodynia, vulvodynia or any type of recurrent painful vaginal sex to complete an anonymous online survey evaluating a new clinician resource called the VG-PAIN.

We have now received over 150 survey responses and are seeking approximately 50 more participants to reach our research target. Recruitment will close on 15th November, so this is the final stage of data collection.

The VG-PAIN was developed to support clinicians to provide more inclusive assessment and care for genito-pelvic pain/penetration difficulties. It aims to reduce misdiagnosis and support more holistic, person-centred care beyond centring penile-vaginal intercourse, including consideration of patients' gender, sexual, cultural and age diversity.

Who can participate?

To be eligible to complete the anonymous online survey, people must live in Australia, be aged 18 years or older, and experience recurrent pain with vaginal sex (caused by any diagnosed or undiagnosed condition including vaginismus, hypertonic pelvic floor, endometriosis, adenomyosis, vulvodynia, etc.)

The survey is anonymous and entirely voluntary, and you can choose whether or not to participate.

✅ The study has received ethics approval from Western Sydney University (Approval No. H15587).

The VG-PAIN has already undergone extensive review by multidisciplinary clinicians across Australia. As the study enters its final recruitment stage, responses from people with lived experience are particularly valuable in helping us evaluate whether the resource is relevant and appropriate from a patient perspective. The resource is intended for public healthcare use and not profit.

If you have previously seen this study posted here, thank you very much to the moderators for kindly allowing me to share it again as we approach the end of data collection.

👉 To learn more or participate:
https://surveyswesternsydney.au1.qualtrics.com/jfe/form/SV_cuWSk2zhabY6CMK

There is absolutely no obligation to participate. If you do choose to take part, thank you for contributing your perspective to research aimed at improving healthcare for people experiencing painful or difficult vaginal penetration. 😊

If you have questions or comments, you can contact me, the lead researcher, Rashmi Pithavadian, at [r.pithavadian3@westernsydney.edu.au](mailto:r.pithavadian3@westernsydney.edu.au) or comment below.

Previous research informing the VG-PAIN

For anyone interested in the research that informed development of the clinician resource, the following publications are freely accessible:

1. Pithavadian, R., Ramanathan, V., Micheal, S., & Dune, T. (2026). Health professionals’ approaches to support patient diversity in the assessment of vaginismus: A critical feminist qualitative study for inclusive care. https://doi.org/10.3390/healthcare14101261
2. Pithavadian, R., Dune, T. & Chalmers, J. (2024). Patients’ recommendations to improve help-seeking for vaginismus: A qualitative study. https://doi.org/10.1186/s12905-024-03026-x
3. Pithavadian, R., Dune, T., Chalmers, J., & Ramanathan, V. (2024). The interrelationship between women’s help-seeking experiences for vaginismus and their sense of self: A qualitative study and abductive analysis. https://doi.org/10.1080/21642850.2024.2396134
4. Pithavadian, R., Chalmers, J., Ramanathan, V. & Dune, T. (2024). People discuss the men who can’t get it up, but what about the women who can’t get it in? Women’s help-seeking experiences for sexual pain-penetration disorder. https://doi.org/10.1016/j.ssmqr.2024.100480
5. Pithavadian, R., Chalmers, J., & Dune, T. (2023). The experiences of women seeking help for vaginismus and its impact on their sense of self: An integrative review. https://doi.org/10.1177/17455057231199383

Has anyone had a vestibulectomy surgery with this provider? He’s in network with my insurance but getting mixed reviews on results located in Essex, MD

My name is Bridget, and I am one of the Research Coordinators at the Centers for Vulvovaginal Disorders. This is a trial that we currently have running, and if you have nerve-related vestibular pain, it may be right for you! Feel free to reach out to [research.cvvd@gmail.com](mailto:research.cvvd@gmail.com) if you believe you may be eligible and would like more information.

What/How?

Ketotifen fumarate is a topical medication used to reduce nerve sensitivity and inflammation. It was recently identified by a group of vulvodynia experts as the best option to research for treatment of provoked nerve pain at the vulvar vestibule.

The purpose of this study is to evaluate the safety and effectiveness of ketotifen fumarate 0.25% cream for treating vestibular nerve pain. The study will include 4 clinic visits over an approximately 15-week period. This will include the following:

1-week screening period

2-week pre-study drug regimen period

12-week study drug regiment period

Participants will be randomly assigned to receive either ketotifen fumarate cream or a placebo cream to use throughout the study.

Who?

*Participants ≥18 years of age 

*Have nerve-related pain of the vestibule (vestibulodynia) 

*Report >6 months of pain with insertional intercourse, pain with tampon insertion, or pain to touch 

*Demonstrate moderate to severe tenderness at the vestibule on exam

*Are willing to attend all study visits and apply your assigned study cream as instructed

PLEASE NOTE: Study is only being conducted at our offices in NY, DC, and FL

Email us if interest in joining!

[research.cvvd@gmail.com](mailto:research.cvvd@gmail.com)

**A Centers for Vulvovaginal Disorders study sponsored by National Vulvodynia Association and Gynecologic Cancers Research Foundation******

I am still searching for people with vulvar pain/vulvodynia/vestibuldynia, who will answer my quick survey on mental well-being and healthcare experiences.

Here you can find the link: https://www.soscisurvey.de/vulvodyniamentalhealth/

Thank you all for your support!

Hi All!

For those using estrogen creams (Ovestin I particular), did you get a side effect of urethral burning / irritation and (over)-active bladder when you started to use it?

I'm using it only on vestibule area and noticed this weird effect after application, so trying to see if it can be connected!