r/vestibulodynia

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

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.

Hi everyone,

I've done pelvic floor physiotherapy for vaginism, followed the exercises, and used vaginal dilators. My condition has improved a lot, and I'm now able to insert the largest dilator without any major issues.

BUT, I still experience bad pain at the vaginal opening. It feels like burning or sometimes like a cut, and it often makes penetration impossible. If penetration does happen, even a little friction quickly makes the pain much worse.

Another issue is that after intercourse I often get UTI-like symptoms.

I always use plenty of lubricant.

Has anyone had a similar experience? Did anything help, treatment, medication, or anything else?

Thank you so much for any advice or experiences you're willing to share 💕

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?

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 to>!finger themselves!<which 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!

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!

Hi all,

I'm curious to know about what everyone's pain feels like and when does it appear. Also how would you rate it on a scale of 1-10 (1 being mild discomfort you wouldn't even notice if you weren't paying attention and 10 being one of the worst pains you have ever felt) Also what activities can you do pain/discomfort free and what are your triggers?

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!

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?

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. 🤍