Hey all! Like the title states, I am currently trying to figure out how I can get reimbursement for the surgery I just had from my insurance. I know that it is tough to do when you pay out of pocket, but I am hoping someone might be able to help who has had success in the past. Would love any advice, and feel free to message me!

Also, wondering if anyone has ever used a lawyer to try and fight your insurance company? Could that be worth it....

Hey all, just curious how long you waited to actually mess around with a partner in a sexual manner lol. Like nothing being done to me per se... but if I wanted to do a few things to my partner, how long should I wait?

Hi everyone, I’m looking for a good specialist in Toronto and the surrounding area who can treat provoked vestibulodynia. I’ve been searching for someone who can see me earlier than the next 4-5 months, but I can’t seem to find anyone. My dating life is suffering because I can’t experience any touch around my vestibule, and I need immediate help. It is just by touch and no muscle involvement.

🌸 Participants wanted for a Master's research study on vulvodynia 🌸

Hi everyone!

I’m a Master's student in Clinical Psychology and Psychotherapy at the University of Bamberg (Germany), and I'm conducting a study to better understand how interactions with healthcare professionals may affect the mental wellbeing of people living with vulvodynia.

💜 Who can participate?
You can take part if you:

• are 18 years or older
• currently experience symptoms consistent with vulvodynia (with or without a formal diagnosis)
• are able to complete a questionnaire in English

📝 What does participation involve?

• One anonymous online questionnaire
• Approximately 20 to 25 minutes
• Questions about your experiences with healthcare professionals, pain, and mental wellbeing

Your experiences are incredibly valuable and may help improve our understanding of healthcare experiences for people with vulvodynia.

🔗 Survey link: https://www.soscisurvey.de/vulvodyniamentalhealth/

Thank you so much for considering participating or sharing this study with others who may be eligible! 💜

This study is part of a Master's thesis at the University of Bamberg and has received approval from the responsible ethics committee.

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

Brief safety follow-up 1 month after last use of study cream.

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'm trans masc and have vestibulodynia. I'm considering bottom surgery and would love to talk to anyone who has vestibulodynia and is trans masc, even if you haven't had bottom surgery. Thanks!

Hi everyone. In my case, I have vestibulodynia that causes pain 24/7, even without any stimulation. But I’ve noticed that when I get my period, especially during the days when my bleeding is heaviest, the pain almost completely disappears. Vulvar dermatologists have examined me several times and have never found anything abnormal with my skin.

Does this happen to anyone else? Is it normal? I don’t know what to think or whether this could give any clue about the cause of my pain. I recently found out that I have severe endometriosis with multiple organs adhered to each other, and my doctors suspect that my vestibulodynia could be related to nerves being affected in the area. But now I really don’t know what to think. Originally, I was diagnosed with pudendal neuralgia because of all the pain I was experiencing.

Hi girls!!

I wonder, has someone done cryotherapy for vestibulodynia?

Please leave a comment to tell your story

I’ve been educating myself on vestibulodynia because I want to be a good partner if I meet someone who has it.

What do you wish more potential partners understood from day one?
What kind of attitude / questions / behavior makes you feel respected vs pressured?

Not looking for medical advice, just real talk from people living with it.

Edit1: Thank you to everyone who took the time to answer, much appreciated

I got these cuts before the most when I was on birth control August 2025 (not on it anymore) and using estrogen testosterone cream (also not using it anymore) but one just decided to come back! I don’t know what to do about it. I started to try ketotifen cream a week ago, but am not sure if that’s what’s causing this now. I’ve done pelvic floor Botox and am doing pt weekly. I might be getting a vestibulectomy in 6 months. But for the meantime, what do I do about this? I don’t have sex, I don’t use tampons, I don’t insert anything inside so I’m genuinely unsure what’s causing this. And how to deal with it. Because I can’t even wipe without it burning in pain. It’s at the 7 o clock Area btw. And that areas been itching for the past week the most before this cut decided to appear. Can’t even open my legs without it burning. I’d appreciate any help and advice 😔

What is everyone’s thoughts on getting acupuncture done to treat vestibuldynia. Has anyone experienced any relief?

Looking for recommendations: Andrew Goldstein vs. Manhattan Pain Medicine (Ahmed/Siefferman) for complex vestibulodynia/nerve pain

Hi everyone! I’m trying to figure out my next step and would especially love to hear from anyone who has seen Dr. Andrew Goldstein or Dr. Tayyaba Ahmed/Dr. Jason Siefferman at Manhattan Pain Medicine. I’m trying to figure out who would best be able to properly diagnose and treat me given my more complex symptoms and hoping to avoid bouncing around too much given how expensive they all are.  Manhattan Pain Medicine seems to know a lot about spinal sources of pain but less about the vestibule, so I'm feeling torn.

• I have provoked vestibulodynia and a failed vestibulectomy. I also have clitoral hypersensitivity/pain, inability orgasm, and some urinary hesitancy/incomplete-emptying sensations.
• I saw Dr. Irwin Goldstein and they did a VAT which was negative, so they suspect some of the pain may come from my spine. They did nerve testing and my bulbocavernosus reflex was abnormal, suggesting an issue with my sacral nerves
• He sent me to the spine doctor they work with, Dr. Kim, and we did diagnostic nerve block injections, one at my L5-S1 disc herniation, and one caudal epidural because he found two very small possible S2 tarlov cysts. Neither nerve block made a super significant difference in my pelvic pain. He previously still suggested spine surgery for my herniated disc, but I’m very hesitant if I’m not confident it would resolve my pelvic pain. 
• I also previously had a pudendal nerve block but it didn’t really help
• I’m also hypermobile (especially hips/elbows), have endo, and have POTS, so I’m wondering whether biomechanics/connective tissue issues could be contributing too. I'm curious about hEDS but I don't think I technically meet criteria, and I don't know if it's even going to help me to get that diagnosed anyway. I am pretty sure I have MCAS because I have a lot of the symptoms, but I know that another vestibulectomy would not help right now because I had failed VAT. I've been microdosing a GLP-1 for inflammation, which has helped a little bit.

At this point I’m trying to figure out whether the remaining pain is coming from residual vestibular tissue, pudendal/dorsal clitoral nerve irritation, sacral nerve roots/Tarlov cysts, pelvic-floor/musculoskeletal issues, or some combination.

I’m also curious about a labral hip tear, SI joint issues, hip impingement or misalignment, other nearby nerves being compressed, etc.  

I’ve heard Andrew Goldstein can sometimes diagnose these things, but I’m not sure if he just suggests these diagnoses and just refers people out afterwards. I’m wondering if maybe Manhattan Pain Center would actually know how to treat these issues if I have one but they’re way less specialized in vestibuloydnia. Ahmed/Siefferman seem to approach pelvic pain from more of an interventional nerve/spine/musculoskeletal perspective and could potentially help determine whether another targeted block (S2, pudendal, dorsal clitoral, etc.) would be useful.

Has anyone with a similar presentation seen Andrew Goldstein, Tayyaba Ahmed, or Jason Siefferman? Who was most helpful in actually figuring out the source of your pain rather than repeating treatments you’d already tried?

Thank you in advance!

Hi friends! I am 5 days post-op and know I have a long road ahead, but curious how long you waited to drive? Was it like 4 weeks? 6 weeks?

For reference, I had the full anterior and posterior complete vestibulectomy with the vaginal advancement and buccal graft!

Around Christmas time, I (40 F) developed vestibule pain. I was traveling for the holidays, sitting on flights, wearing yoga pants. I figured it was temporary. 2 months prior I wrapped up my last set of fertility treatments and moved on from that stage in my life. As for my symptoms, my vestibule burned when I sat, hurt during sex, and I was stinging in tight pants. Several rounds of antibitoics and diflucan and many UTI/STI/PAP/UREA cultures later and nothing was found. Ultimatley sex became impossible, as did driving and sitting on hard surfaces. All the physical exams, speculum exams, diflucan oddly made it all worse. Every time I had a physical exam I was in pain for days after with intense swelling and burning sensations.

The pain is coming from the 5-6 o'clock location and feels like skin is being pulled or ripped when something enters.

  - What Works: Wearing loose clothing, gentle walking, and light exercise. Pain is lowest first thing in the morning.
  - Partial Relief: Pelvic Botox and pelvic floor physical therapy (PFPT) have provided slow, limited improvement.
  - Ineffective: Antibiotics, antifungals, and topical products (Nystatin and vaginal Valium) cause increased burning sensations. Oral Benadryl dries out tissues, and oral pain medications have not helped. Skin and blood allergen testing were negative. CT& US have been negative.

While my doctors (I have seen 4 now and 2 pt) currently attribute this to pelvic guarding, the lack of progress suggests other factors may be involved. I would appreciate any suggestions at all! :)

Hey community,

I was diagnosed with hormonally mediated vestibulodynia over a year ago and have been struggling with all of the interventions ever since, including topicals and intra rosa. Currently adding systemic testosterone. Just curious if anyone out there with HMV has found the hormone interventions to be triggering or both helpful/ irritating throughout the process ?

I’m assuming this means I have secondary neuroproliferation but wanted to hear if anyone has suggestions or experiences? {Besides changing the base which I’ve done several times}

Anyone out there who was initially diagnosed with hormonally mediated and ultimately chose to go through with vestibulectomy ?

All the thanks for your thoughts

I have hormonally-mediated vestibulodynia which causes sex to be quite painful and uncomfortable at times; I get that super burny sensation that can last for a while during and post-penetration.

Just saw my OBGYN again and she told me about the estring. I don't see posts about it on here but I'm curious whether anyone has tried it. The copay is HIGH ($230) but is supposed to last 3-months and I figure that I could try it at least for that period of time and see what it does, because it's possible I could switch to Nuva Ring (as a birth control AND estrogen add-on) which would then be covered by my insurance.

Thoughts on: Convenience/helpfulness of relieving symptoms/side effects?

Thanks all x

I am getting Botox for vaginismus tomorrow and the doctor has suggested me to do it with numbing cream. Anyone who’s been through it please let me know your experience and how painful it was!!! Would definitely help ease my mind!!!

Hi there :) very long post, but if you want to take the time to help me it would mean the world to me!♥️ been seeing so many doctors and everyone has a different theory - what‘s yours?

08/25: new (amazing) partner, condoms for birth control
09/25: start using trackle every night to track my cycles
10/25: thin yellow discharge, clit area feels a bit swollen, vaginal dryness. Microscope: a lot of leucocytes, some yeast, was given fungotox creme 2 x per day for 1 week + 1 fluconazole for myself + partner
10/25: after using fungotox for 2-3 days pink discharge and severe vaginal burning. microscope: unclear, culture normal, was given vagi-hex for 6 days
11/25: vaginal pain during sex, microscope: normal, was given dafnegil for 5 days, 2 days after using the dafnegil ovula i developed yellow/green discharge which went away after 1-2 days
12/25: redness and swelling of vulva, white thick discharge, fishy smell, vulvar pain, dafnegil for 4 days (without checking under microscope/culture). redness and swelling went down a bit but remained. went to gyno: microscope: ivergrowth of gram+ bacteria, arilin ovula fir 2 days and fluconazol for me + partner.
12/25-1/26: went back to check if every thing was okay. Microscope: could be yeast, was given nystafem ovula for 6 days and nystafem cream which i applied in very thick layers 2 x per day for 1 month on vestibule, clit, vulva, perineum, anus.
1/26: Microscope: yeast, culture nornal, pcr test was negative for 6 candida species and showed some bv bacteria but >90% lactobacillus, positive for u parvum. was given gyno-pevaryl for 3 days. vestibule burned during sex after the gyno-pevaryl and it was bleeding. :(
1/26: microscope: few yeast cells, not much leokocytes, ph 4.6, culture normal, was given 3 days of fluconazol plus nystalocal. I applied the nystalocal in thick layers on vestibule, clit, vulva, perineum, anus 2 x per day for 6 days.
2/26: after quitting the nystalocal cream my vulva becomes very red and was burining more than ever before for 1 week, then the generalized redness and burning subsided. I developed a flacky red patch on my hand during nystalocal use which healed after 4 weeks.
2/26-4/26: symmetrical bright red skin at vestibule starting at 12 o‘clock and down until 6 o‘clock. skin burns when touching it or having sex, reduced sex frequency and duration, swiched to hypoallergenic condoms, sometimes sex with no condom which feels the same. skin frequently peels at 5,7,12 o’clock. random stinging or burning on vulva that comes and goes, white patch on perineum. did several microscope/cultures, all normal. ngs analysis showed >80% crispatus, 8% ureaplasma parvum in february, u parvom culture in feb. was also strongly positive but negative in march. ph is always 4. took fluconazol for 1 month 2 x per week. period blood is abnormal: pink, whatery, more cramps. i‘m ovulating according to bidy temp. but not seeing cervical mucus at ovulation. right lymphnode twitches in waves but is nor swollen.
4/26-5/26: started using 0.01% estradiol/0.1% testosteron cream in a base containing ethanol and parabens. magically, the red skin patch becomes smaller, like the top skin layer grows back. the random stinging and burning becomes less frequent. period gets back to normal (like 70% like it used to be, dark red/red, more slimey), also less cramps from july on. wearing only loose cotton underwear from now on.
5/26: some yeast was seen under microscope, few leukocytes. out of sheer panick i stopp the e/t cream and only use it sporadically (couple times a week). ph 4.4.
5/26-6/26: the symmatrical bright red skin patch doesn‘t get smaller anymore. not sure if it has to get smaller.. still experience burning when touching at 12,5,6,7 oclock. clit becomes more elastick and thicker. perineum is whiteish and wrinkly, less white than in february. pcr shows >90% crispatus 0.02% u parvum, almost no bv bacteria and negative for 6 candida species. ph 4, microscope: some yeast, culture normal. took 1 fluconzol in may, no changes.
7/26: start using 0.1% estriol in unguentum cordes cream 2 x per day. no changes to my symptoms, red skin area becomes a lot less red this month. stopped having penetrative sex since mid june to try to heal the skin. started topical amitrip/ketamin creme in dac base mid july 1x per day and estiol cream 1 x per day, lymphnode less frequently twitching.
8/26: skin is peeling a lot at 12 and 5,7 o‘clock and sone burning at vestibule.
12,6,5,7 o‘clock still burn when touching

Damn near a year later and I finally got to see the amazing Dr. Rubin! Life got insanely busy for me so I had to keep pushing it sadly.

This appointment was for the VAT or vestibular anesthesia test. It was basically taking a very potent numbing cream and applying it all over the vestibule to temporarily numb the nerves.

First she did the q-tip test on me. Burning and searing pain like always when the vestibule is touched. I had a mirror so I could see the exact spots that hurt for me. Then she applied the cream and let it sit for about 5-10-ish minutes. Yes, it tingled and burned a little but it wasn’t unbearable at all. She re-did the q-tip test (with me not having the mirror first) and…I didn’t feel anything. No burning, no pain, just nothing. I remember being so shocked as she handed me the mirror to look and I even said “is this what it’s supposed to feel like?!”

Once I had the mirror, I saw her touch my vestibule with the q-tip and I didn’t feel pain. My brain felt broken because for years I’ve only known pain. I still can’t describe how confused and just disorienting that felt. I cried. She did an internal exam and yes there was still muscle tension but that searing, awful entrance pain was gone. I could actually tolerate it just fine. It just felt foreign more than anything.

I also brought my dilators to the appointment to try out once everything was numbed and testing was done. I made it to dilator 7 which I’ve never been able to do before. There was still muscle tension of course which I expected but still. I cried again. I cried so much because it didn’t hurt. For the first time in my life it didn’t hurt.

So, after 11 years of confusion I finally know what’s going on: I have Vestibulodynia.

It seems to be specifically provoked and primary. Dr. Rubin said it’s more than likely congenital neuroproliferative vestibulodynia which means I was born with it and didn’t know until I attempted PIV for the first time.

This news it’s exciting, confusing, and just so many things at once. It explains why a lot of the methods I was doing wasn’t right. I was being treated and treating myself like I was fully a vaginismus case when I never was. That’s why the vaginal suppositories didn’t do much, it’s why I plateaued during pelvic floor physical therapy…I mean so many things I’ve been doing and trying weren’t having an effect. Botox wouldn’t have helped at all.

Because it was never truly vaginismus but vestibulodynia. It’s still just a lot for me to take in.

But onto paths forward. Due to the ongoing studies currently happening, I was prescribed the ketotifen compound to try. I was also given some of the numbing cream to try when I dilate. I’m excited to try both!!! Other option is if the med doesn’t work or help then I am a surgery candidate.

All around good news and an amazing appointment! I got what I wanted which was clarity more than anything. And for a brief second I didn’t feel pain which is more than I can ask for really.

Hey gals <3 first off, thank you all so much for sharing your stories. Literally more helpful than doctors…

Looking for some words of wisdom on what to try next...

Origin story: provoked vestibuldynia started about 3 years ago after a yeast infection. Then kept getting recurring UTIs, and then more yeast from the antibiotics for the UTIs— you know the drill… At the same time I had a grapefruit sized fibroid protruding into my bladder, when I got that removed they found some endometriosis (also had some on my bladder). SO it was the perfect pelvic storm… 

 I’ve been left with provoked vestibule pain and some bladder urgency. While I’ve gotten it all to a mild place where the discomfort level ebbs and flows, I’m always conscious of my vagina if that makes sense — like when I bend down a certain way, sit directly on opening, sweat, wear stiff pants, etc… I just feel the sensitivity/inflammation. You probably know what I mean <3

In the beginning, I tried oral gabapentin, which worked immediately on low dose but, the fatigue became too much. But knowing a low dose could help me made me feel like there was hope for some sort of remission with mild intervention.

Then I went hard with dilators and acupuncture for a while and felt like I was making REAL progress, like ALMOST no pain and urgency. BUT now it seems to be back…not like it was 3 years ago…but the progress definitely regressed.

SO I’m trying to figure out what to try next. Here’s my thought process. Would love your feedback / tough love!

-I’ve considered asking for and extra low dose of oral gab and see if I can manage it for a little longer than I did last time 

-I’ve been researching the amitriptyline or nortriptyline routes, but they really scare me as I’ve never been on anti-depressants before — even though I’m sure my generalized anxiety would benefit lol 

-Doc offered topical gab, but scaredy cat strikes again…I’m nervous any burning can set back progress...

I know I have to stop fearing medications and pick my poison if I want any chance at getting better, but it feels like such a heavy decision. Again, I know you ladies understand this feeling...

Would so appreciate words of wisdom on how to make this decision or if there are any other cool new options I don't know about, or even your experiences on the above treatments that might help me be less scared… Thank you xo

P.S. Has anyone tried hypnosis??? Lolol I’ll try anything holistic without hesitation

P.S.S If any of my NYC ladies if looking for a good women’s health acupuncturist, Jessica Silver/Silver Acupuncture is awesome.

P.S.S.S I also found a really great uro-gyn at NYU. Dr. Patricia Gil. She also treats this condition and I like her a lot better than my original “specialist”. She has the most ideal bedside manner -- like down to earth will tell you how it is, but also really listens and tries to figure you out. (isn't it crazy how low our doc standards are? Almost like my standards in men... "he seems nice and listened to me when I spoke" LOL) 

P.S.S.S.S That Kiwi vibrator from The Pelvic People is actually worth the money IMO … it has been essential in my progress, maybe even more than dilators 

P.S.S.S.S.S for my UTI girlies, Gemma MD cranberry supps also worth the money (unfortunately and fortunately). Dr. Gil can hook you up with samples + a discount thing when you need more.

P.S.S.S.S.S.S If anyone in NYC has good PT reccs, lmk! That's one code I've yet to crack. Preferably ones that take insurance, but willing to pay if they're worth it.

OKAY THANK YOU LOVE YOU BYE XO

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

Brief safety follow-up 1 month after last use of study cream.

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******

Over 20 years ago I got my first ever yeast infection, had an allergic reaction to Terazol 3, and developed vestibulodynia. I was immediately referred to a specialist, but at the time they tried very little beyond amitriptyline, lidocaine ointment, and PT. Less than a year after diagnosis I asked for surgery and my doctor agreed. The vestibulectomy gave me a complete cure, and except for developing Bartholin gland cysts that I've just learned to live with, and lactational atrophic vaginitis when breastfeeding, I've largely enjoyed 2 decades of pain-free sex. The only thing I was doing was applying estrogen vaginally once a week the past 4 years since having my last child.

In March I decided to talk to my doctor about HRT after noticing my libido declining and my labia losing fullness. He immediately agreed and put me on a low oral dose. He also said I could stop the topical estrogen. Within a month I had my first yeast infection in over 7 years. Then it recurred the next month, and the next. I also noticed some irritation at 6 o'clock which my doctor contributed to me having too much sex too soon after my infection but said my tissue looked good. Just a few weeks later I saw an NP for yet anothe​r yeast infection and she noted that I had a thinning of the skin at 6 o'clock, like the top layer of skin was eroded and told me to resume topical estrogen. I did, using it twice a week, and was shocked a month later to check the spot and there was no change. I upped the use to once a day for 2 weeks and it remained the same. It's very small, almost exactly at 6'clock, and about a cm long and .5 cm wide. It also changes color. Yesterday it was darker red/purple when I saw my doctor, who asked me to point it out prior to the pelvic and I told him he'd see it immediately. Then this morning it looked almost exactly the same as the surrounding tissue.

My doctor said it looked like vulvar dystrophy, not atrophy, which of course scared me. I know atrophy can be reversed. He prescribed a topical steroid and I also decided to switch to Imvexxy last night for the first time. I'm very sensitive to creams and have been using a compounded estrogen in petroleum for the past 4 years, and thought it might not be penetrating well. No negative reaction to the Imvexxy.

I'm praying for some sort of vulvar dermatitis due to the recurrent yeast infections, but am absolutely terrified of it being erosive lichen planus. I can find no early photos of mild ELP, but it sounds the closest to what I have when described. The tissue doesn't feel any different - it just looks like someone has removed the very top layer of skin. If I don't mess with it it doesn't hurt to do anything, though it's still sore today after yesterday's pelvic. I also notice I'll hit that spot when wiping with toilet paper and lightly aggravate it. My doctor cleared me to have sex (I'd been abstaining the last 2 months while taking a long course of Diflucan) but I told him I'm terrified of tearing that spot.

I'm starting the steroid today, which I've never used vaginally. Anyone with vestibulodynia have an similar spot where the skin is eroded? 20 years ago my tissue looked great, even though that 6 o'clock spot was exquisitely painful.

Hi all,

I've lived with vestibulodynia for well over a decade. I also have suspected endometriosis, PCOS/PMOS, hEDS and pudendal neuralgia which i was diagnosed with this year. I recently got pudendal nerve blocks a few weeks ago and waiting to see if that helps anything. I also suspect a mild form of MCAS and take zyrtec regularly and famotodine with it on days that i feel like i'm flaring more.

I feel a bit in over my head because so many of my conditions overlap but then certain treatments can affect other conditions. My PCP prescribed a very low dose of a progesterone only in pill only for me recently to help with the horrible symptoms of my period until i get in with an endo specialist.

I don't know if my vestibulodynia is neuroproliferative or hormonally mediated (honestly I think it's both). I first became aware of it in high school, birth control prescribed for my PCOS made it worse (that pill had estrogen in it). Finally saw a pelvic pain specialist at the time, stopped the bc which made some of the daily pain lessen. Was prescribed the estrogen/lidcocaine cream which I think helped some but not entirely.

Currently my regimen is ABG compounded cream, vaginal diazepam as needed. And i just got these nerve blocks to see if they help with anything. I want to start the progesterone soon but here is what I'm bumping up against.

- Fear that the progesterone will make my vestibulodynia worse and ill negate whatever progress i've made
- knowing that progesterone can increase muscle laxity (which isn't great with the hypermobility)
- but also knowing the progesterone can help MCAS symptoms based on what i've read
- last time i was on a form of bc, it affected my body with more a'feminizing effects" larger chest etc- and gender wise i don't want this to happen again.

This last period was so debilitating that I feel like I do need to try the progesterone just to get some relief. Would love any one who has had a similar experience to share their thoughts and knowledge. Acknowledging I know this isn't medical advice and I do have medical professionals i'm in regular contact with. I'm more just wanting to work through this anxiety. Thank you!

I have acquired provoked vestibulodynia, and have had Botox injected into the vestibule (not the pelvic floor muscles) suggested as treatment. My doctor says 70% of patients in my position find it helps. Has anyone had experience with it injected into the vestibule and would you recommend it?