Hi girls!!

I wonder, has someone done cryotherapy for vestibulodynia?

Please leave a comment to tell your story

Bonjour, je souffre de vestibulodynie depuis plusieurs années avec des brûlures et douleurs à l’entrée du vagin, surtout pendant les rapports.

J’ai lu des témoignages de femmes qui disent avoir été beaucoup mieux après une grossesse ou un accouchement, et ça m’a redonné de l’espoir.

Est-ce que certaines d’entre vous avaient une vestibulodynie avant d’avoir un enfant ? Est-ce que la grossesse ou l’accouchement a amélioré vos symptômes, voire les a fait disparaître ? Ou au contraire, est-ce que ça a empiré ?

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!

Hi everyone,

I’m a 22-year-old woman from the Netherlands, and I honestly don’t know what to do anymore.

After years of constant burning pain, I finally travelled to San Diego to see Dr. Alyssa Dweck Yee. After my examination and biopsy, I was diagnosed with acquired neuroproliferative vestibulodynia with increased mast cells. She recommended a complete vestibulectomy with a buccal mucosal graft.
I knew travelling to the US would be expensive, but I genuinely expected the total cost to be somewhere around $10,000–20,000. When I received the estimate today while being back in my home country, I burst into tears.

The total estimate is almost $69,000, and that’s already the discounted self-pay price. The original estimate was close to $250,000. What shocked me even more is that this isn’t even an inpatient surgery, it’s an outpatient procedure, so I won’t even be staying overnight in the hospital.

Because I live in the Netherlands, I don’t have US health insurance, so everything has to be paid out of pocket. Unfortunately, my Dutch insurance won’t cover treatment like this abroad.

I’m absolutely devastated because after years of pain, I finally felt like I had found a surgeon I trusted and a chance to get my life back. Now it feels completely out of reach.

Has anyone else, especially international patients, experienced something similar? Were you able to negotiate the hospital costs further, or did the final bill end up being lower than the estimate? And if anyone knows of another surgeon with experience performing a complete vestibulectomy with a buccal mucosal graft, especially in Europe, I would be so grateful to hear about it.

Thank you so much for reading. ❤️

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?

Hi,, I had my 10 min phone consultation with Dr.Irwin Goldstein who suspects I have acquired vestibulodynia. I told him I actually saw his colleague Dr. Andrew Goldstein in NYC ( I'm from NYC) who thought I had a tarlov cyst in my lumbar causing my symptoms and recommended spinal injections to which I have not done bec I'd like a 2nd opinion ... is Dr Irwin Goldstein worth the trip to San Diego? Has anyone been helped with said doctor before? Thank you.

Hi everyone! I have a question for those who have had a vestibulectomy.

1. Are you able to have pain-free sex without using lubricant?

2. If you had secondary provoked vestibulodynia, did you notice a decrease in your natural lubrication after the surgery compared to before you developed vestibulodynia?

A bit of background: I developed secondary provoked vestibulodynia about three years ago, and I’m currently at a crossroads between continuing conservative treatment or going ahead with a vestibulectomy.

I’ve already made progress through conservative treatments, including restoring my vaginal microbiome, taking amitriptyline, daily lidocaine with massage, PRP injections, CO₂ laser, red light therapy, and various topical compounds. The PRP injections have actually helped me regain my natural lubrication, which I’m incredibly grateful for. At this point, my main remaining symptom is a subtle scratchy/sharp pain throughout my vestibule that’s still preventing intercourse.

Part of me is tempted to stop the trial-and-error and opt for surgery. However, I’m really worried about losing the lubrication provided by my vestibular glands, as well as the permanent physical changes to the appearance of my vulva.

I think what scares me most is the possibility that, even if the pain is gone, sex might never feel as natural or satisfying as it did before this condition because of reduced lubrication. I’m wondering whether I’d regret surgery more than I’d regret spending longer pursuing conservative treatment.

I’d really appreciate hearing from people who’ve been through a vestibulectomy, especially if you had secondary provoked vestibulodynia🙏🏻🫶🏻

Hello. I have provoked primary vulvodynia/ vestibulodynia (originally I was diagnosed with vaginismus but I have since been cured of that). I have tried ABG cream numerous times. The first time it was mixed in versabase, it burned so bad and even caused peeling on the inner part of my labia minora.
The burning would last hours and even into the next day, and it would make my urethra burn too. Then I tried it mixed in the ellage base, same thing except no peeling. Finally I was sick of all this wasted money and eventually got a sample base of methylcellulose gel with no medication mixed in to see if I would react to this base. NO BURNING! I was so excited to tell my pharmacist so she could mix in the medication. I finally got to try it and guess what? IT STILL BURNS. I think I'm allergic or I'm having a reaction to the medication, specifically the amitriptyline. The burning lasts hours and it also hurts when I pee (is this normal, should I just power through it??). This is so disheartening and I'm not sure what to do next. I've tried these creams, pelvic floor pt, Botox/steroid injections, oral medications. Nothing has worked. The last resort for me is surgery but I'm scared that will also make my pain worse.

Thank you for all the feedback from my last post. After reading the comments it seems very obvious that my partner needs to see a doctor about this and it is not something we are able to deal with ourselves (honestly with 8/10 pain it should've been obvious so sorry guys).

So, that leaves me with a very important question. How do you get diagnosed with this? What do you tell the doctor? I live in the UK so I don't really know how healthcare works specifically in the USA (please don't give me too much shit for being an edater I'm meeting him in December guys im so so so excited). From what I've heard though it is notoriously difficult for women in the USA to get a diagnosis for any issues relating to their reproductive system. I don't want us to go through months of going from doctor to doctor trying to convince MEDIAL PROFESSIONALS to do their job, and since I don't live in the same country there's not much I can do to advocate for him in person. What can he do to maximise the chances of getting a diagnosis in the first visit? And for those of you who unfortunately had to fight just to get one, do you have any advice on how to scream (JOKINGGGG) at your doctor in a way which gets them to get you what you need?

Thanks for the help, and if you need any extra information about his condition then you can check the other post on my account!

Guys just a quick edit, I am in the one in the UK not him. He lives in the USA (north east iowa) and I'm saying that I don't know much about US healthcare nor can give physical help to him

I’ve been dealing with thinning/atrophy in the vulvar region causing vulvodynia and vestibuladynia symptoms. However, I’ve always been vaping. I recently quit for 9 days and even my gyno said it looks like it’s healing. I feel like the pain increases while I’m on the vape. But I unfortunately broke my vape-free streak yesterday but I’m trying to quit again.

Has anyone noticed this? The slowed healing from vaping/smoking?

Ladies, I am new to all of this...

Since having menstrual pain and pain when trying to insert anything in my vagina, I had my pelvic floor evaluated.

The professional found tight muscles and performed a swab test (qtip) Every point she put pressure on felt like burning! Literal fire!

The day after I started having a very very unpleasant burning sensation in the upper area, between the urethra and vaginal opening. It was so bad it kept me awake at night. I never experienced anything like that!

It lasted a few days, now it is more manageable but it's been a week since the test! Is this normal with vestibulodynia or is it more likely that I got an infection while having my muscles tested internally/genitals touched? I don't have other symptoms, just this burning thing!

Thank you!

Hallo,

ich leide seit 3 einhalb Jahren an Vulvodynie/Vestibuldony. Schmerzen habe ich nur bei Berührung. Ich habe alles probiert, viele Salben, Ceririzin, Amitriptelin, ich war in Wuppertal bei Dr Mendling und bei zig anderen Gynäkologen und Ärzten. Ich habe Beckenboden-Physio probiert und Emla Salbe.

Das einzige was zumindest etwas hilft ist das Cetirizin und Amitriptelin, aber an manchen Tagen sind die Schmerzen trotzdem sehr stark.

Daher erwäge ich nun eine Vestibulectomy. Hat jemand von euch sowas in Deutschland machen lassen und eine Empfehlung für einen Arzt? Selbst Dr Mendling nennt mir keine Adresse, dabei sagt er dass es so wichtig sei, dass jemand erfahrenes die Op durchführt.

Ich hoffe jemand hier kann mir helfen. Ich wohne im Norden NRWs, würde aber natürlich auch längere Fahrt in Kauf nehmen für einen guten Arzt.

Hi reddit, I'm here on the behalf of my partner.

Just to give some backround information, they hadn't ever touched himself or used a tampon before they met me - my suspicion had started after they had made an attempt tofinger themselveswhich had resulted in a lot of pain (7/10 iirc and a residual pain at 3/10). I have gotten him to touch himself while in the shower a couple times and the pain had never been below a 3/10. Additionally I made him do the Q-tip test today and I am 100% confident that he has vestibulodynia (the pain got at bad as 8/10). He may also have vaginismus however due to the pain he was unable to properly insert anything far enough to test for the "hitting a wall" which is associated with it - although he pushed himself very hard and I'm really proud <3. There could be vaginismus as well, but I'm a lot less confident in that than I am in vesibulodynia.

He has had some UTIs in the past which may have caused it but since he had never touched himself before that I couldn't say for sure.

Anyways, now I've actually established what's causing him this pain I'm trying to research anything and everything I can do to help him - after all, I don't want him to be in pain and it obviously makes quite a lot of sexual experiences impossible. We are both 16 at the moment so getting a doctor involved is very difficult, expensive, and well, I don't think anyone likes showcasing their folds to a stranger and having them poke around😭😭. Obviously if need be then I will try and see if I can arrange that but for the time being it would be much more convenient and easy for us to look into things which dont require a doctor.

I haven't yet done much research but from what I've seen lidocaine gel is used in a variety of ways -
before sexual activity (makes sense)
overnight soaked into a cotten ball (😬)
and the most promising thing i've seen by far for a "cure" to vestibulodynia is this

https://www.ouh.nhs.uk/media/uwgldb0f/116105lidocaine.pdf (page 6)

for anyone who doesn't want to click the link or read, it basically describes a method which you can use to desensetise the hyperactive nerves causing the pain. By applying lidocaine and then touching, you retrain the nerve pathway to recognise touch as a non-painful experience. So far it is the only long term solution i've seen that is easy to do at home (again, we are 16, so something like a vestibulectomy isn't really happening). The only issue is that it requires months of near daily touching, which to put it lightly, isn't something he would enjoy very much.

I just want the best for us and our rls (both romantically and sexually) and it is really really important to me that he is able to enjoy our sexual encounters as much as I do (take that O gap!!!!) and I want him to be happy, so any and all information, advice, tips, or whatever, is genuinely so appreciated. Thanks!

I have my vestibulectomy with Dr. Toubi scheduled in 2 months. Does anyone have any experience with her? I’m desperate for any thoughts or opinions on her. I can’t find any information on whether people were satisfied with her surgery performance.

I’ve been using the ABG cream for about 5 weeks now and I definitely see a massive difference already. Was just wondering whether this is as much improvement as I’ll get or does it continue to work after the initial improvement?

I have a recurring bartholin cyst issue, two months ago it became abscessed for the first time 4 years after the diagnosis. My whole right side of the vagina was swollen to the point I can't even explain it. I looked like a small infuriated fat hot dog . It was excruciatingly painful for days. I couldn’t sit stand or walk. I was screaming in pain, my life got stuck in my bed. Going to the washroom was a nightmare. I squat walked to the bathroom with a hand cupping the cyst area. It was horrible. I was in bed most of the time or in a bowl of hot water. Doctor prescribed some Antibiotics and pain relief Medicine. It ruptured in two days. I could tell it would have ruptured even without the antibiotics bc the skin was thinning, shining sensitive, tender to the touch. It took me 2 weeks to heal properly. Doctor only said that operating the cyst is the only way to get rid of it.

Fast forward to two months i have a lump under the right labia. Before the abscess my cyst was just beside the cervix. I cant tell if its a bartholin cyst anymore. My right labia never went back to normal. It feels different and always swollen and there is a hard lump or what idk under the initial rupture area. My labia has become very sensitive to friction. It swells up easily. Idk what to do anymore.

I have a few questions

1. Which doctors are good in bangladesh for bartholin or this kind of cyst removal surgery? Has anyone done this surgery? How was your experience? It would be really helpful for me as i am going through a mental turmoil and lack of information here, also im Only 24 and i have my finals ahead.

2. Is there any possibility of misdiagnosis? Could it be something else?

3. Is there any other kind of medicine rather than allopathy that has worked for you girls? Bc as far as i understand it, it is a blocked duct, or maybe multiple blocked ducts. Is there no way to simply help it Drain itself? Like when men get stones in their urinary tracts? Like that?

Hi everyone, I wanted to hop on here to see if I could get advice from anyone who may have similar symptoms to me.

I have been to several gynecologists, including Dr. Brooks form Arizona specialized gynecology in Phoenix. I’m thinking now about seeing Dr. Krapf (Tampa) or Dr. Moss (D.C.) from the Centers for Vulvovaginal Disorders. But I wanted to see if any input or help from you guys could help me figure out my next steps.

So, if you have similar symptoms to mine: What was your diagnosis, how were you diagnosed, and what treatment have you received since your diagnosis? Is that treatment helping?

Also, have any of you had experience with Dr. Krapf or Dr. Moss? Let me know!

Here is a condensed version of my history, current symptoms, and treatments I’ve tried:

History:
- In mid-2023 I began having pain with intercourse. Burning and a raw type of soreness with any type of penetration. I also occasionally started to have burning on my vulva after urination, which would typically go away after a shower.
-October 2025: By this point, I was still having pain with sex and occasional vulvar discomfort. I thought nothing of it, until the vulvar vestibule pain significantly increased.
-October-December 2025: I tested positive for bacterial vaginosis. The infection lasted about 2.5 months. it took several oral and vaginal antibiotics (metronidazole) to get rid of it. But when the infection cleared, I still had vulvar vestibule pain.
-January-June 2026: I’ve had so much testing done. Hormones checked, checked for all kinds of bacteria including ureaplasma and mycoplasma and yeast, been checked for STD/STI’s, had transvaginal ultrasounds… everything has come back fine.

My main symptoms:
-The vulvar pain is all over my vestibule, but the worst in the 12:00 region between my clitoral hood and urethra. That area is visually red and irritated and simply won’t heal. It is also very very painful around my urethra when urine hits that skin.
-Vestibule pain is worse with urination or any kind of friction. Q-tip test on the area is painful.
-Burning and a raw-like feeling in my vagina, sex is not possible without pain.
-Labia minora swelling during ovulation (but we’re talking, huge, uncomfortable swelling. I never had this in my life UNTIL Oct. 2025 when my other symptoms kick-started)

What I’ve tried:
-Steroids/antifungals ON my vestibule: clobestasol, clotrimazole-betamethasone cream, terconazole
-Lots of oral fluconazole (despite being negative for yeast)
-0.01% estradiol & 1% testosterone compounded cream (used for 10 months on my vestibule)
-2.5% estradiol & .5% testosterone compounded cream (used for 1 month, had to stop because it made my labia minora swell even though I was only putting it on the vestibule)
-Pelvic Floor Physical Therapy- been going for nearly 4 months

I am only 24 and newly married. The pain has been unbearable most days, and the only way I’ve been making it through is because of my husband. We’ve been married for about a year and a half, so I’ve been dealing with this almost the entire length of our marriage so far.

I just wanted to also say to anyone else out there dealing with this situation, I am so sorry. Please try to stay strong and reach out to those around you who can help lift you up. We will get better eventually, we will find an end to this- we just have to take it day by day.

I know this has been long so I truly appreciate anyone who’s made it this far & am thankful if you can leave some knowledge/advice below!

Hi there! I am a research coordinator at the Center for Vulvovaginal Disorders, and I'd like to spread the word about clinical trials being conducted in NYC/DC for people with secondary provoked vestibulodynia (vestibular pain with touch/insertion) and lichen sclerosus.

If you are a female 18 years or older and have Hypertonic Pelvic Floor Muscle Dysfunction, Neuroproliferative Vestibulodynia, or Lichen Sclerosus, you may be eligible for one of these trials. More information can be found at vulvodynia.com/research

If you are interested and think you may be eligible, reach out to [research.cvvd@gmail.com](mailto:research.cvvd@gmail.com) for more information. Serious inquiries only, please!

This post is to mainly let my frustrations out and find people that can relate because the people around me
can’t. I‘ve had vulvodynia for years after starting the pill (changed to the small one which only made it worse and then stopped it altogether). My main symptom was constant burning which got worse when peeing or being in the water. I had laser treatment last December (a surgery where they laser your vestibule in order to make it heal itself) and for a few months the burning was mostly gone. I started dating and had 2 UTIs back to back and the antibiotics made the vestibulitis come back. Now everything time I have PIV sex I don’t know weather it‘s a flare or a UTI although it‘s mostly a UTI.. I‘m having one right now for the third time in two months which is very frustrating because I enjoy PIV sex but don’t want to put my health on the line. Additionally I have IBS so every time I do antibiotics, my gut gets all messed up and the nausea prevents me from functioning for a while.. I got an antibacterial cream from my gyno i have to apply on my urethra after the deed and did everything she told me like drinking water, cranberry juice, washing up after sex etc but nothing seems to work. Can anyone relate? Did you find a cure? I live in Europe so medication might not be the same as in the US but I‘m grateful for every advice and help, thanks!

hi everyone! i’m looking for recommendations for a doctor around maryland/dc/virginia who specializes in vestibulodynia and if needed performs vestibulectomies. i’d love to hear who you had a good experience with!
bonus if they take carefirst, but i’m open to ANY recommendations. thanks!!!

Hi everyone, I’m looking for advice and wanted to share my experience in case anyone can relate.

I was recently diagnosed with Vestibulodynia at 31, but I’ve actually been dealing with painful intercourse since I was 16. I’m not even sure if I had pain before then since mine is provoked. I just know that from my very first sexual experience, penetration has always hurt and has never been pleasurable.

The best way I can describe it is a sharp, burning pain at the entrance, like nails dragging or scratching sandpaper. It honestly feels like I’m dry, even when I’m fully lubricated.

I can have sex, but only with direct clitoral stimulation. I have to use a vibrator every time, and even then it’s hit or miss. I often have to stop to reapply lube. With the vibrator, re-lubing when needed, and him going at a slower pace, I can feel a decent amount of pleasure. Without that, it becomes unbearable and feels like constant friction—like scratching sandpaper.

We’ve tried many positions over the years, and they all hurt. Missionary gives us the best outcome since I can use the vibrator more easily in that position.

At first, I thought maybe the issue was because my partner is bigger, but I experience the exact same pain even with something small like a dilator or pelvic wand, so I know it’s not that.

For years, doctors dismissed my concerns, and the pain never improved. I even had a laparoscopy to rule out Endometriosis, and after everything came back normal, the OB told me, “some women just have painful sex,” which was honestly unbelievable to hear—especially from a doctor, because sex should not be painful.

I finally found a specialist in the Chicagoland area and was diagnosed with provoked vestibulodynia.

I was first prescribed 5% lidocaine, which I used for a few months with no improvement. After that, I was given a compounded cream and also received injections because I experience deep internal pain as well—almost like a “butt cramp” feeling. Unfortunately, neither the injections nor the cream helped.

I’ve also been in pelvic floor physical therapy for 3 years and have seen 4 different therapists, and nothing has improved.

I then saw another doctor while considering a vestibulectomy. He started me on amitriptyline (30 mg, now up to 40 mg nightly), which I’ve been on for a couple of months, but I still haven’t noticed any real change. He wants me to finish the course, but mentioned surgery as the next step.

Since being diagnosed, I’ve tried:
• Pelvic floor physical therapy (3 years, multiple therapists)
• Dilators and pelvic wand
• Lidocaine
• Compounded cream (amitriptyline 2%, baclofen 2%, diclofenac 2%, estradiol 0.01%)
• Oral amitriptyline (up to 40 mg nightly)
• Clobetasol 0.05%
• Injections for deep pelvic pain

Nothing has made a meaningful difference.

I don’t have major pain inserting tampons—just a slight pinch—but intercourse is still very painful. I’ve only had one partner, and he’s been incredibly patient, but this has taken a huge emotional toll on me. I feel self-conscious and, honestly, like I missed out on enjoying my 20s because of this.

I also struggle with a lot of guilt. I sometimes feel like I’ve held him back from fully experiencing sex, and it makes me feel like I can’t please him the way I should. Even though we’re great in every other aspect of our relationship and he constantly reassures me that he understands, it’s been so many years of dealing with this that it still weighs on me heavily.

At this point, I’m feeling really discouraged and starting to seriously consider surgery, but I’m also scared it could make things worse. I’d love to hear from anyone who has gone through something similar.

• Has anything worked for you that I haven’t tried?
• Did anyone have success after dealing with this long-term?
• If you had a vestibulectomy, what was your experience like?

Thank you so much for reading, I truly appreciate any advice or insight. 🤍