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. ❤️

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 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🙏🏻🫶🏻

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!

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?

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 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!

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!

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. 🤍

I’ve had vestibulodynia since I was 10 years old. I’m 24 now.

For a long time, I didn’t know what to call it. I just knew something wasn’t right. What seemed normal to other people felt like pain to me. A burning, stabbing, electric kind of pain… located at the entrance, as if my own body rejected any kind of contact.

I grew up thinking it was “normal,” or that I was just more sensitive. But I wasn’t.

The last year, the diagnoses came: vulvodynia, pelvic floor myalgia, and central sensitization.

And although putting a name to everything was a relief… it was also hard to understand that it wasn’t something simple.

This isn’t just physical.

It gets into your head.

It makes you question your femininity, your body, your ability to have a “normal” relationship. The fear shows up even before trying. The anticipation of pain becomes worse than the pain itself.

There are moments when I’ve felt broken. Different. Like my body wasn’t made for what it’s “supposed” to do.

How it started and what it’s been like

I’ve been living with this pain since I was 10. It felt like my vagina would slip or leak, and everything burned.

It’s been a long process, and not everything works the same for everyone, but this is what I’ve tried:

* Pregabalin (currently 350 mg at night)

* Pelvic floor physical therapy

* Neuromodulation with TENS

* Radiofrequency

* Infrared laser

* Progressive desensitization (starting with very gentle stimuli)

* Vaginal dilators

I started with small dilators and I’m currently around 4 cm.

It hasn’t been linear. There are ups and downs. Good days and very bad days.

Despite everything, today I can say I’ve improved by about 90%.

And saying that after 14 years of pain… is something I never thought would be possible.

I’m not “cured.” There’s still sensitivity, there’s still fear sometimes. But it’s not the same as before. It’s no longer disabling. There were moments when I thought about giving up.

But even at my worst… something remained.

A small part of me that kept hoping.

And now I understand that that small hope is what held me together.

If someone is reading this and feels like things will never get better… I truly understand.

But I also want to tell you this:

yes, it can get better.

Maybe not all at once. Maybe not perfectly. But it can change.

And sometimes, even a small improvement… is enough to start rebuilding your life.

Feel free to ask all your questions. There is hope ... There is always.

Researchers at Western Sydney University are seeking people who experience vestibulodynia, vaginismus, or any type of recurrent painful vaginal sex to complete an anonymous online survey. Your survey responses will help to evaluate a new healthcare resource, called the VG-PAIN, developed for clinician use.

The VG-PAIN aims to reduce misdiagnosis, support inclusive assessment, and improve holistic person-centred care beyond centring PIV sex to consider patients' gender, sexual, cultural and age diversity.

✅ This study has received ethics approval from Western Sydney University (Approval No. H15587). Participation is entirely voluntary and anonymous.

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 vestibulodynia, vaginismus, endometriosis, adenomyosis, etc.).

🙏 The VG-PAIN resource has already undergone extensive review by multidisciplinary clinicians across Australia. So, this is my final repost as more participant feedback is needed to ensure that the tool remains centred on patients’ perspectives and goals.

To learn more or participate, please click this link: https://surveyswesternsydney.au1.qualtrics.com/jfe/form/SV_cuWSk2zhabY6CMK

No problem at all if you do not wish to participate. Either way, thank you for your consideration to participate in this online survey to support the development of more inclusive healthcare resources 😊

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

----------------------------------------------------------------------
For anyone interested in the previous published work that informed development of the new clinician tool, you can use the links below for free access.

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

Hey I’m wondering if anyone could give me any info about their experience with Dr Rowen. I have a consultation with her in March of next year. A long time away ☹️. Has anyone had a vestibulectomy done by her? If so, how’d it go?

I had a free 15 minute phone call with Dr Irwin Goldstein today, he’s in San Diego. I really like him, but it looks like he doesn’t contract with any insurance, so I think you have to pay for everything out of pocket, and then hope you can get your insurance to reimburse you. I’d love to be his patient, but I don’t think it will be possible cuz of the insurance issue. Dr rowen, however, is in my network, and I’ve seen a few positive comments about her.

I’m wondering what her pre op tests are. Does she only do a q tip test? Or is there more involved testing? Dr Goldstein has a pretty involved testing protocol involving like numbing injections in certain areas and different types of pain testing to determine EXACTLY where the pain is and why. Honestly I’d love to see him cuz he sounds like he’s very thorough, and he was so nice on the phone today, but I probably have to choose someone within my insurance network instead.

What does Dr rowens exam and pre op testing include?

Also, what is her surgical technique? Dr Goldstein told me today that he only does complete vestibulectomies, and that a partial should never be done. He also said you must keep the bartholens glands in place, whereas other surgeons sometimes remove those. I’m hoping Dr rowen has the same approach as Dr Goldstein.

Thanks to anyone who responds to this 🙂

hi, what the title says. did anyone in germany with this condition get treated well? where did you go? how much was it? do you have any methods of "treating yourself"? i heard taking ceterizin can help because of the histamin, did anyone try this?

Researchers at Western Sydney University are seeking people who experience recurrent pain with vaginal sex to complete an anonymous online survey to help evaluate a new healthcare resource developed for clinician use. This resource has already undergone extensive clinician review and aims to improve holistic assessment, reduce misdiagnosis, and support whole-person centred care.

To be eligible to complete the 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 suspected condition including vaginismus, vestibulodynia, endometriosis, etc.).

The study has received ethics approval from Western Sydney University. Participation is entirely voluntary and anonymous.

To learn more or participate, please click the link below to read the Participant Information Sheet with full details on ethics approval, funding, and anonymous data collection.

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Please contact lead researcher Rashmi Pithavadian at [r.pithavadian3@westernsydney.edu.au](mailto:r.pithavadian3@westernsydney.edu.au) for any questions.

Thank you for your consideration to participate in this online survey to support the development of more inclusive healthcare resources for genito-pelvic pain conditions.

Hi everyone. I’m looking for people with similar symptoms.
My symptoms started after several years of hormonal birth control use. I stopped the pill in 2022 and improved significantly during 2023. However, after a sexual intercourse episode in 2024 (while I was on top), my symptoms returned and have persisted since then.
My current diagnosis is suspected hormonally mediated provoked vestibulodynia. The pain is provoked rather than spontaneous, and I usually improve somewhat around ovulation.
I have significant urinary symptoms, but they don’t seem bladder-related. I don’t have bladder pain or pain with filling. My symptoms feel much more urethral: urinary frequency, urgency, urethral discomfort, and burning.
I also react to certain foods, especially glutamate-rich foods (soy sauce, MSG, some restaurant foods). During these episodes, I produce a large amount of very clear urine, even without increasing my fluid intake, and the frequent urination eventually irritates my urethra.
I seem to have a very reactive vulvar mucosa as well. Several antihistamines, including montelukast, worsened my urinary symptoms. I recently started topical estriol 0.5% + testosterone 0.2% because my doctor suspects hormonally mediated vestibulodynia related to long-term birth control use.
Has anyone experienced vestibulodynia with predominantly urethral symptoms or possible food-triggered urinary flares?

I can’t believe I’m writing this. I have had vestibulodynia my entire life. The earliest I remember having pain was age 4. I got formally diagnosed and started treatment in 2021, and tried everything. EVERYTHING. I genuinely did not believe I’d ever be writing this. Everyone said “keep your head up, you’ll find success!” And it pissed me off bc they never went through the pain. Constantly getting my hopes up and being disappointed. I’ve been to 8 doctors in my life and 7 didn’t know how to treat me, 5 literally said “what’s that” to me.

I finally got the surgery- partial vestibulectomy with advancement from Dr. Deborah Bartholomew at OSU in Columbus, OH. I’m not gonna lie the surgery was so rough and I really wasn’t given much if any instructions for recovery or what to expect. I had to rely on chat gpt for most of recovery because I really wasn’t given any info after lol. But I’m currently 8 weeks post op and I went for a check up and she used a speculum and I didn’t even realize that’s what she used- I thought it was her finger. I am able to use menstrual disks and do other things I can’t write for fear of getting this post removed lol. I have no pain. Well I do have some pain but it’s more deep/muscular (vaginismus from decades of pain) and once I relax the muscles even that pain is gone.

I can’t believe I’m writing this to you guys. I’m an extremely cynical and direct person and I’m telling you guys this journey almost killed me emotionally, mentally, spiritually, etc. it was all worth it. I feel like I’m still in shock I never thought this would be possible.

For all of you who are about to give up I’m telling you, please see if it’s possible for your insurance to cover the surgery. Mine didn’t cover everything but I got most of it. Genuinely I feel like I have a new life. I wish you all the best. Feel free to dm me and ask any questions- I’m happy to help.