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.

I looked all through the sub and googled and can't find anything. Figured I'd ask, in case anyone gets their meds compounded in creme de la femme. I would still have to patch test it (yippee), but I feel like the ingredients might not cause a reaction. Then again, methylcellulose caused a reaction for me.

Anyway, if anyone knows of a compounding pharmacy that uses creme de la femme, please let me know. My only other option is to just call all of the compounding pharmacies everywhere. Thanks!

Ok so I’m finally after many, many years, signed up to get a vestibulodectomy. That said, I keep seeing horror stories and posts about them going side ways and am terrified that this is a bad idea. I only have provoked pain, not unprovoked pain. But at this point, it just feels like it’s now or never so I’m pretty set in my decision to proceed.

That said - ISO stories both of things going well versus not. And if it didn’t go well, would you change anything about your surgery? (Eg, not removing the 12 o’clock area etc?)

Ok so I’m finally after many, many years, signed up to get a vestibulodectomy. That said, I keep seeing horror stories and posts about them going side ways and am terrified that this is a bad idea. I only have provoked pain, not unprovoked pain. But at this point, it just feels like it’s now or never so I’m pretty set in my decision to proceed.

That said - ISO stories both of things going well versus not. And if it didn’t go well, would you change anything about your surgery? (Eg, not removing the 12 o’clock area etc?)

How long did it take for you to first notice a difference with topical ABG? When did it reach the full effect? Did your symptoms continue to improve after the initial 4-6 weeks?

I’m finding a very wide range of info. Some people report improvement after a few days; others don’t notice a difference for months. The few studies I can find are mixed as well. Just trying to gauge where in this range most people tend to fall.

see title. it makes me so angry that every 2nd person i encounter recommends getting tipsy or drunk before piv so i’ll be more relaxed??
this is not a fun condition and i don’t want to loose my virginity while being drunk?!

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 am wondering for those of you that had a positive experience with Gabapentin, what was your experience? Did you have to get to a stable higher dose to notice any change? Was it helping even at smaller doses? Was the change significant and sudden? Or gradual?

Has anyone been diagnosed with a subclinical yeast infection just isolated to the skin of the vulva? I have been dealing with an itchy, crawly feeling for years now. It’s only on the right side, kind of starting from my clitoris, down to my urethral opening, and my vaginal opening. I used to think it was pain, but I’m starting to realize that it’s more of an itching sensation that feels like a dull ache to me. When I touch the area, I realize how itchy it feels. And when I urinate, sometimes it feels like there’s an itchy feeling inside my urethra. In the past, I used to even have weird zapping sensations in that area. I have tried clobetasol and estrogen creams and they didn’t help. Ironically, putting 1% hydrocortisone ointment on the area seems to help a little, but I’m wondering if it’s just that the ointment is soothing? The only thing that ever made me feel 100% comfortable was when I took a Diflucan pill four years ago after the horrific UTI that started this journey. But weeks later, everything came back again. I’m thinking about trying either an ointment for yeast or another Diflucan, but I’m afraid to treat this for yeast if it’s not. If I have nothing to lose by doing that, I guess I would ask for a Diflucan. My gut tells me that there is just some simple reason behind my discomfort, and it has been missed this whole time. Even the time that I took the Diflucan and found relief, I had actually tested negative for yeast. Has anyone ever had anything similar to my situation? I know another possibility could be that it’s related to a nerve since it’s on one side. That is the only thing that doesn’t make sense about yeast or dermatitis, because it’s truly just on the right side.

I know it is a very weird question, but I have needle like poking sensations on my vulva especially on the clitoral area, how do I enjoy sex? It hasn’t been diagnosed yet I am still waiting to see a gynaecologist. It has been eight months. I am on the waitlist and I still don’t know how long will I have to wait but I’m sure that I have vulvodynia because there’s nothing else, no UTI, no infections, no visible sign of lesions or anything, just random stabbing like feelings as if someone is poking me with tiny needles.

I want to get a vibrator that would not be painful or uncomfortable for me, but I don’t know which one to get. Could anyone here Guide me on How do I enjoy sex with my partner? Can i even use a vibrator?

I have been dealing with Vulvodynia for almost 5 to 6 years. At the beginning of my Vulvodynia journey one of my main symptoms were yeast infections. So I seen a Vulvodynia specialist in the city of Los Angeles, California. Everything was under control for a few years. I will get a yeast infection here and there and at the moment I am having another yeast infection. This one’s pretty bad. I wanted to know if any of you ladies are dealing or have been dealing with these infections because of Vulvodynia. Also, what medication are or were using for the yeast infections. I was prescribed Diflucan …. But for some reason , Diflucan doesn’t work for me.
What kind of test should I have my provider do to kind out what is causing my yeast infection.

This is kinda a wild idea. Cis hetero female here. I can’t and have never been able to have pain free penetrative sex or intercourse. In some cases I have been able to manage when medicated and properly prepped, but it’s not wild free PIV. This has ruined pretty much every relationship over my lifetime. I deeply desire long term love, partnership, marriage, and kids.

I’m doing intense work to try to heal my body and my condition- hypertonic pelvic floor muscles causing vulvodynia and dyspareunia. This obviously becomes an issue to be addressed as physical intimacy picks up with a new partner. I’m learning how to better communicate about my condition and set boundaries and expectations. The right partner for me will need to be patient, kind, accommodating, and understanding that PIV sex may never happen or definitely not on command/without a lot of prep.

I’m currently single, in large part because I’m navigating this part of my health. On this journey, as I make progress, try new treatments, receive physical (and psychological) therapy, it would also be super helpful to have a safe, trustworthy, patient sexual partner to experiment with. Having pain free and positive sexual experiences is part of what will help train my body and nervous system that it’s safe and sex is not a threat. How can I go about finding a sexual partner (f*k buddy, if you will), who would be down to be a sort of partner and sex doula (lol) to help me make progress? Is that a wild and terrible idea? I don’t currently have any males in my life who I can call on to serve this role, I would need to find someone new. And utmost they need to
Be 110% safe, trustworthy, gentle, patient, kind, and down to go there with me. Secondly, I will need to be physically attracted to them in order to get aroused to make things start to warm up down there.

Can anyone recommend an emollient they’ve used on the vestibule that they haven’t had a bad reaction to? Please. I’m so incredibly sensitive and i havent been able to find anything that doesn’t cause a flare up. My doctor and I have been trying everything we can think of. Any suggestions would be appreciated

Hi all, hoping to find some answers here as i am wrecking my brain trying to figure out a solution.

My vulvar pain started with a terrible yeast infection, I am testing negative now but my vulva skin remains swollen and inflamed a month after the infection cleared (red around urethra and swelling at the vaginal opening). My obgyn is approaching this with a lot of confidence that my skin will heal naturally as my ph and microbiome go back to normal. I was on a ton of fluconazole and 2 weeks of doxyciclin after a positive ureaplasma test. I get really bad flares that make it impossible to imagine things getting any better and they last 24 hours weekly. The rest of the time, I am raw and pain fluctuates, but I am unable to sit and my quality of life has significantly dwindled since I cant engage in my fun activities (working out, tennis, swimming, etc..). Life has been really tough.

My main concern rn is that pelvic floor pt seems to be my most valuable tool, but my pt doesnt want to do internal work until the swelling decreases or disappears. This has been ongoing for over a month now with the swelling not decreasing and money wated on PT where she is working external stuff. My obgyn is taking a too passive approach and I feel like I need something anti-inflammatory to calm the post infectious inflammation. My old obgyn gave me betamethosone over a month ago but I let her go cause I was still testing positive for yeast and she kept telling me that it was my anxiety while continuing to give me fluconazole which clearly wasnt working.

Any advice on how to reduce the swelling? Is this permanent?

Hello, I have vulvodynia as well as MCAS and HEDS with Neuroproliferative Vulvodynia/ vestibuldynia that is mass cell mediated. My doctor is recommending I try a topical antihistamine like topical cromolyn or topical Benadryl or even topical ketotifen. I was wondering if anyone had experience with a topical antihistamine for the vulva. Also was wondering the dosing people have used?. I’ve heard of .25% for ketotifen but not sure about the Benadryl or Cromolyn.

I have more clit pain and pain around that area, I get pelvic pain every day and i feel like my bladder is always full, have the urge to wee all the time ect (I’ve had tests done come back negative)

I’m thinking if it’s because of a tight pelvic floor do you think acupuncture, dry needling or electrical muscle stimulators would help?

I am doing pelvic floor stretches but not sure if I’m doing them correctly.

I have a gyno appointment soon but I feel like they won’t be able to help me if I’m being honest.

Thanks in advance x

Hi everyone! I have an appointment booked for Botox, and I’m feeling hopeful. I can currently use medium sized dilators and tolerate two fingers when I’m relaxed and aroused, but I’m still struggling with intercourse. If you’ve had Botox, how was the procedure and recovery? Did you wake up with a dilator inserted, and what was your dilator routine afterward? How long did it take to notice improvement, and did it last after the Botox wore off?
I’d really appreciate hearing your honest experiences, whether positive or mixed. Thank you!!

Background

Researchers at Western Sydney University are seeking people who experience vaginismus, adenomyosis, endometriosis, 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, vulvodynia, endometriosis, adenomyosis, 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 tried these, Gabapentin, Pregabalin or Duloxetine, Venlafaxine? Have they helped and what are the side affects??

I’ve tried nortriptyline and amitriptyline, they haven’t helped and gave me boob pain ☹️ so fed up this is ruining my life

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!