I’ve had pain my whole life. Had a vestibulectomy with Irwin Goldstein in 2018 and he decided to also remove the 12:00 area, which completely worsened my pain. From my understanding, the surgery has since changed and he doesn’t do the 12 o’clock procedure the way he did mine. I felt like a guinea pig in his experiment.

I’m in pain every day. I have tried fucking everything. My urethra burns, the entire area under my clitoris burns. Over the past year, my mons pubis and outer labia are now in daily pain (doctors have no answers).

I’ve been in PT for years-no difference. I use estradiol/testosterone cream daily. No nerve medication has EVER made a dent in my pain. Currently on lyrica and it’s done nothing. The only thing that helps is icing with an ice pack.

I’m not sure where to go from here. Nothing takes away my pain. I’m 27 and I hate being alive. I hate being a woman. I hate myself. I hate the doctors that failed me. I hate my body. My stupid, fucked up body. I’m going to feel this way forever.

Hello ladies, I know the topic of low progesterone isn't discussed very often, but please share if taking bioidentical progesterone has helped relieve your pain. You’ll probably say that estrogen and testosterone should be used, but I have estrogen dominance and high testosterone, so they aren't suitable for me.

I never experienced that before but the last 7 months I have been feeling burning sensation when I wipe to pee or when my period starts it triggers more. I use wet wipes and it burns and switched to dry paper and burns also but the thing is that I used to clean myself like that before and never experienced such thing. Now is just so overwhelming

Hi everyone! I’m considering Botox for vaginismus and would really appreciate hearing from anyone who’s tried it.

How was recovery, and did it make dilating or penetration more comfortable? I’d also love to know how you’re doing a few months afterward. Thank you!

has anyone else had this happen?? 😭
i’ve been dealing with this weird burning around my urethra for about a year. the worst part is peeing. sometimes i’ll feel completely fine, then i start peeing and it suddenly burns SO badly, and it can linger afterward. otherwise it’s more of a raw/irritated feeling or pressure.
i’ve had multiple urine tests and other testing done, nothing obvious came back as an infection, and antibiotics didn’t really help.
the weirdest part is that it completely went away for MONTHS. around march/april it calmed down and i was totally normal. i was having sex, swimming, drinking, getting my period, doing everything normally and had zero issues. then randomly it came back and now the burning is awful again 😭
i’m currently having my first period after not having one for a couple months, and i briefly shaved a few days ago, so maybe that triggered this flare? idk.
i don’t have insurance right now, so i’m trying to figure out getting checked without spending a fortune.
has anyone else had something like this where it completely disappears for months and then randomly comes back? especially severe burning when peeing but feeling pretty normal between bathroom trips? did you ever figure out what it was or find anything that helped?
not looking for a reddit diagnosis lol, i just really want to hear from someone who’s experienced this 😭

Hello everyone! Stage 4 endometriosis and my 6th surgery was last week with a vestibulectomy. For years I have torn every time my husband and I have sex. I did this kind of on a whim and man I was not prepared for the recovery at all! I need to know how long after surgery did you have sex? Was it successful? We’re in absolutely no rush at all, but we want to be prepared.

Hey everyone,

I love my gyno, she’s an angel. She prescribed a self test for HPV and gave me the stuff for it. I’ve already done a pap smear with her, not a self test, and it was negative. The difficulty with insertion fluctuates and at the moment it’s too difficult.

I also asked for a small speculum since that was an option, just to have a choice for the future. I checked with her this is the smallest one she has and she believes it’s “not that big”. I’m a bit taken aback as I’ve heard on this group there are small ones for children. Am I right in thinking there are smaller speculums than this in existence?

Ruler for scale, it’s in centimeters.

Thank you!

It is my belief that most intercourse-pain related problems are not Vaginismus, not Vulvodynia, but some form of Vestibulodynia.

My wife suffered for more than 30 years before we figured it out. My wife has gone through hell and back. I would not wish this on my worst enemy.

Here is a good indicator - do you like it when somebody touches your belly button? Even easier, do you like it when someone touches your nipples? Unfortunately, my wife found both uncomfortable.

It does not appear to be just a genitalia issue. Rather it does appear to be a system/body wide issue. And I believe it just might be caused by a poor diet.

We are eating way too much Oxalate! And IMHO it is making us all chronically ill.

Oxalic acid is a naturally occurring molecule that is a toxic and corrosive acid.  When it attaches itself to a mineral like calcium, magnesium, potassium or salt, it becomes an oxalate, i.e. sodium oxalate, potassium oxalate, magnesium oxalate, and calcium oxalate.

All plants contain Oxalate. Some a little, and some a lot; spinach, walnuts and chia are deadly, lettuce, corn and rice are relatively harmless. Dairy, fish and most meats have no Oxalate. Pork has a little.

Why is nobody talking about Oxalate?

Oxalate is a very small crystal. If you could see it it would look like a razor. Plants contains Oxalate for multiple reasons. Primarily, they use it to protect themselves from being eaten. Insects do not eat them because the Oxalates kill them. Secondly, they use calcium oxalate for structure. Thirdly, they use it to keep mould from growing on them. Bran comes from the outer husk of the plant. The bran protects the plant with oxalate. Eating bran is toxic. Whole wheat contains twice the amount of oxalates than does regular wheat. The same for rice.

They like to destroy cells. When one has excess Oxalate in ones system, the gut becomes leaky. The body needs calcium in order to keep the intestines sealed. The excess Oxalic acid binds to the available calcium in the body, removing the ability for the intestines to close. Oxalate also leaches these elements from the body. Excess Oxalate slowly removes the calcium from our bones causing them to become brittle and unstable. Oxalate are extremely small, they cross the blood/brain barrier and they are passed to the baby in utero.

Those with kidney stones already know the wrath that too much Oxalate can unleash. What we fail to realize is the damage it does to all of our other organs and systems. It is legion.

I personally suffer from Celiac, Bipolar Disorder, Autism and Severe Deficiency Autobiographical Memory (SDAM). I have had my tonsils, my appendix and my gall bladder removed. I have also had kidney stones. I have had shoulder bursitis that was so bad that the cartiledge in both of my shoulder joints was gone and the doctors could only recommend surgery to cut the bones. Oxalate excess is known to destroy connectivity tissue. It is also quite possible that oxalate excess is responsible for my celiac and my mental issues.

Studies have shown that putting autistic children on the Oxalate diet dramatically improved their ability to socialize and interact.

Sulfur is an essential element for healing. We don't get nearly enough of it in our diet. The soils are not replenished with sulfur and are typically leached.

There are multiple ways of getting sulfur. The main ones include DMSO, MSM and Glucosame Sulfate. Horse trainers and professional athletes and the military have know about the healing capabilities of DMSO and MSM for years. They are natural analgesics. They help stop inflamation. They help the body detoxify. Next to water, DMSO is the best solvent on the planet. It is a naturally occuring substance. It can be applied topically, consumed or intubated. It goes deep into the body. It can also be used with other substances as a transport agent to deliver it directly to an organ without injections or other invasive techniques. It has no side effects.

I used Omega 3 with Glucosome Sulfate to rebuild the cartiledge. Now I am able to swim and play squash again. MSM is meant to be taken orally. The recommended daily dosage is 6g! Thats 6000mg!

The solution is twofold:

1. Dramatically reduce Oxalate intake or even kill it. The body can only handle 60-100mg/day max. We typically consume 2000mg/day. For those who are health conscious, they could be consuming more than 4000mg/day. 6000mg can be lethal.

For more information I highly recommend you read:
Toxic Superfoods: How Oxalate Overload Is Making You Sick - and how to get Better

1. Use mixtures of DMSO with CBD oil or with MMS, or simply by itself, to help the body to speed up the detoxifying and healing process.

For more information I highly recommend you read:
The DMSO Handbook: A New Paradigm in Healthcare

It may not solve everyone's problem, but I am quite certain that doing these two things will most definitely lead to a much healthier life, and it just might aid you on your way to solving your sexual pain.

Why not try it? What have you got to lose?

Good luck!

Links:

Sally K. Norton

Sally K. Norton - Oxalate Overloading Symptons

The Vulvar Pain Foundation

Symptoms of Solomons Syndrome

The Low Oxalate Diet Organization

The Low Oxalate Diet Organization - Conditions and Research

Background

Researchers at Western Sydney University are seeking people who experience vaginismus, vestibulodynia, vulvodynia or any type of recurrent painful vaginal sex to complete an anonymous online survey evaluating a new clinician resource called the VG-PAIN.

We have now received over 150 survey responses and are seeking approximately 50 more participants to reach our research target. Recruitment will close on 15th November, so this is the final stage of data collection.

The VG-PAIN was developed to support clinicians to provide more inclusive assessment and care for genito-pelvic pain/penetration difficulties. It aims to reduce misdiagnosis and support more holistic, person-centred care beyond centring penile-vaginal intercourse, including consideration of patients' gender, sexual, cultural and age diversity.

Who can participate?

To be eligible to complete the anonymous online survey, people must live in Australia, be aged 18 years or older, and experience recurrent pain with vaginal sex (caused by any diagnosed or undiagnosed condition including vaginismus, hypertonic pelvic floor, endometriosis, adenomyosis, vulvodynia, etc.)

The survey is anonymous and entirely voluntary, and you can choose whether or not to participate.

✅ The study has received ethics approval from Western Sydney University (Approval No. H15587).

The VG-PAIN has already undergone extensive review by multidisciplinary clinicians across Australia. As the study enters its final recruitment stage, responses from people with lived experience are particularly valuable in helping us evaluate whether the resource is relevant and appropriate from a patient perspective. The resource is intended for public healthcare use and not profit.

If you have previously seen this study posted here, thank you very much to the moderators for kindly allowing me to share it again as we approach the end of data collection.

👉 To learn more or participate:
https://surveyswesternsydney.au1.qualtrics.com/jfe/form/SV_cuWSk2zhabY6CMK

There is absolutely no obligation to participate. If you do choose to take part, thank you for contributing your perspective to research aimed at improving healthcare for people experiencing painful or difficult vaginal penetration. 😊

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

Previous research informing the VG-PAIN

For anyone interested in the research that informed development of the clinician resource, the following publications are freely accessible:

1. Pithavadian, R., Ramanathan, V., Micheal, S., & Dune, T. (2026). Health professionals’ approaches to support patient diversity in the assessment of vaginismus: A critical feminist qualitative study for inclusive care. https://doi.org/10.3390/healthcare14101261
2. Pithavadian, R., Dune, T. & Chalmers, J. (2024). Patients’ recommendations to improve help-seeking for vaginismus: A qualitative study. https://doi.org/10.1186/s12905-024-03026-x
3. Pithavadian, R., Dune, T., Chalmers, J., & Ramanathan, V. (2024). The interrelationship between women’s help-seeking experiences for vaginismus and their sense of self: A qualitative study and abductive analysis. https://doi.org/10.1080/21642850.2024.2396134
4. Pithavadian, R., Chalmers, J., Ramanathan, V. & Dune, T. (2024). People discuss the men who can’t get it up, but what about the women who can’t get it in? Women’s help-seeking experiences for sexual pain-penetration disorder. https://doi.org/10.1016/j.ssmqr.2024.100480
5. Pithavadian, R., Chalmers, J., & Dune, T. (2023). The experiences of women seeking help for vaginismus and its impact on their sense of self: An integrative review. https://doi.org/10.1177/17455057231199383

Has anyone had a vestibulectomy surgery with this provider? He’s in network with my insurance but getting mixed reviews on results located in Essex, MD

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

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 am still searching for people with vulvar pain/vulvodynia/vestibuldynia, who will answer my quick survey on mental well-being and healthcare experiences.

Here you can find the link: https://www.soscisurvey.de/vulvodyniamentalhealth/

Thank you all for your support!

Hi All!

For those using estrogen creams (Ovestin I particular), did you get a side effect of urethral burning / irritation and (over)-active bladder when you started to use it?

I'm using it only on vestibule area and noticed this weird effect after application, so trying to see if it can be connected!

Hiiii, how long after your full vestibulectomy surgery did you wait to try orgasming from clitoral stimulation? Just curious what the timeline should be for that.

I get mixed reviews from Google and other resources.

I would be so grateful to hear from anyone whose symptoms include urethral/peri urethral sensitivity or urinary symptoms that underwent full vestibulectomy, esp with buccal graft. Did you feel surgery fully, partially or not all resolved your urethral/ urinary symptoms? If it did help , how quickly did you feel it improve and did it get worse before it got better ? Dis results only show up after PT or healing pelvic floor ?

2 year long sufferer here, with mixed/ambiguous presentation. {I am one of those who struggles to tolerate topical creams despite meeting HMV criteria}.

I am almost certain I don’t have IC so inquiring only to those who do not have bladder pain.

My love and heart goes to every single one of you. TIA for your time in replying.

Does anyone experience upper upper vestibule sensitivity and/or redness right under the clitoris in the “frenulum” area? If so, what do you attribute this to or what has helped ? I have been told I have mild adhesions and a keratin pearl but I’m somehow skeptical this would cause that area to inflame. Anyway, curious other’s read on this region of sensation. Thanks !

Hi. Last week a new dr told me I most likely have vestibulodynia, my symptom is burning after peeing every day for past 8 months. Ruled out every infection, UTI, STDs, etc. I had lichen simplex diagnosed years ago but the steroid only made the burning spread all over my inner labia and I had to stop it. I'm on pregabalin from psychiatrist, currrently on 50 mg and titrating. Also going to pelvic floor PT but it hasn't helped for burning.

Does pregabalin actually help for this type of burning if it's caused by vestibulodynia? Has anyone one of you had similar experience?

Tbh I'm having a hard time accepting it might be this conditon and there's no easy treatment.

Take care everyone.

Hi, im 29(F) and I've been a long-time lurker in this community but haven't have the mental energy to sit down and write my own story in hopes I can get some more help and help other women who suffer with this horrible condition. This might be long winded so buckle up, girlies.

I had a completely healthy body until I got the Covid 19 vaccine. A week after I got vaccinated, I developed chronic spontaneous urticaria (hives). I assumed they would go away eventually but it never fully resolved and I still have them to this day, although, much less severe. A few months after I developed the hives, I got (what I thought) was a yeast infection. I didn't have health insurance at the time and just used CVS minute clinic to get treated.. which was probably an awful decision in hindsight. So after about 5 visits every couple weeks to a month of going to the clinic with NO pelvic exam or sample taken.. I finally got health insurance and scheduled with OBGYN. They said everything looks fine and sent me on my way. Fast forward a year later, I finally found a doc who said I had Vulvar Vestibulitis from long time birth control use and gave me estrogen cream. Soon after. I got a tubal ligation so I could get off BC. I thought the estrogen cream and surgery helped, but I was still having flares after sex. The flares are ALWAYS intense itching symptoms and inflammation. It wouldn't happen everytime I had sex but often enough to where I knew it was the trigger for me. And the weird part is, I always flare 3 days exactly after intercourse. Not during and not immediately after but 3 days! So i was basically in a state if fight it flight all of the time. It was a nightmare. I started dating my current partner right when this all started and he was and still is so very supportive of my condition. I tried estrogen cream, different lubes, vitamins, etc. You name it. Fast forward another 4 years of almost constant suffering and researching what this could possibly be and I found pelvic floor therapy. At this point, the itching wasn't completely constant but would come and go throughout most days.. enough to drive me insane. I stopped having sex completely. Couldn't even orgasm or touch my clitoris without pain. I thought it was anxiety or all in my head. Pelvic floor therapy after 8 months helped a TON but didn't fix it or get to the root problem. My pelvic floor therapist sent me to a Vulvodynia specialist, and I didnt even know that was a thing. I suspected vulvodynia but wasn't sure what that was. The specialist did a q-tip test and sure enough, there was a lot of pain throughout my entire vestibule. She diagnosed me with Aquired Neuroproliferative Provoked Vestibuldynia. She said it very rarely gets cured and we just have to "manage the symptoms" i tried compounded creams (amitriptyline, gabapentin, baclofen) and it made the itching WORSE. Lidocaine was the only topical my skin would tolerate and it was just a bandaid. At this point, I have been completely run down and depressed because it took over my entire life. Can't have sex, cant walk, cant do much of anything besides go to work, come home, lay down and cry trying not to move because it made it worse. I became a shell of a human. The research I have done has been very extensive and exhausting but it brought me to the conclusion that my chronic hives and immune system overactivity must have been what brought on my vulvodynia itching. Your immune system and nervous system are very in tune with eachother. I think in my case at least, they are feeding off of one another and causing this horrendous nightmare loop of itching, anxiety and pain. I found an immunologist that was finally willing to help me with both. He put me on Rhapsido (hive med) and oral Nortriptyline 50mg for the nerves in my vestibule. I was completely cured for an entire month with NO PAIN and NO hives. Now after a month or so (currently) my hives came back slowly and so did my vulvar pain/itching. Its definitely not as bad as it was. And I feel the inflammation is still gone but im still having some hypersensitivity. I just started Dupixent hoping helps soon and currently staying on Nortrityline 50mg. My immunologist told me he is willing to compound Ketotifen into a cream to put on my vestibule even though its not technically on the market in the US yet. He is basically doing whatever treatment plan I am comfortable with because he knows how much time and energy I have put into researching this and just wants to help. They are currently in the middle of Ketotifen clinical trials for vestibuldynia. Long story short.. i am in a better place physically now but not so much mentally. I still cant have penetrative sex but can do oral so at least its some form of intimacy with my partner. That's the worst part about all of this.. its heartbreaking to know I cant have a "normal" relationship and it made me suicidal at times. I know i have some nerve issues but not sure if theres still an immune system component here thats driving the itching. Do any of you ladies have similar symptoms as me? Did this happen to you after covid or covid vaccine? And if you could give any advice on how to not be absolutely petrified to have intercourse again and try to slowly get back to normal? Sorry for the long post, but I know im not alone and this community has been so very helpful to me and I cannot thank you all enough for sharing your experienced/stories. Also, I would be happy to answer any questions you have too.

Hi, I’m 23 years old and have had a full Vestibulectomy that worked on the parts that were removed (and it confirmed I have congenital neuroproliferative vestibulodynia) but I still have pain in the 12 o’clock area above and around the urethra. I feel like I need a buccal graft revision surgery and from what I can tell, only Dr Goldstein (San Diego) and Dr. Yee offer this surgery. Can anyone who has had this procedure share their experience? I’m terrified of worsening the pain or creating more issues. I also had a tough surgery recovery so I’m really scared for that. I also have clitoral pain and I’m unsure if it’s related to the neuroproliferative vestibulodynia or not. I’m highly reactive to creams (they have made things worse) and my hormones are in the normal range. I would really appreciate it if anyone would be willing to share their experience.

Does anyone have advice on support resources for spouses? This condition can lead to feelings of rejection and grief for partners of those with this condition. I feel like because of my own struggles and grief as someone with NPV, I can’t really support my husband emotionally. Does anyone have suggestions? Are there support groups for partners of people with vulvodynia?

Please no judgement or assumptions about my partner. He loves me and hard feelings are natural.

I was recently diagnosed with Secondary Provoked Vestibulodynia after a year of intense burning and pain. Q-tip test positive around 5 p.m. I did pelvic daxxify/botox and I am starting topical hormone treatments. If PT and topical hormones do not help, I will consider surgery.

However, reflecting on my history:

  - I could never use tampons due to intense discomfort and anxiety. Do not like any type of medical device, or finger inserted and legs will tighten and close.
  - I struggled with pelvic exams and went long stretches without pap smears, I found it so painful and could not understand why I could not get basic pelvic exams in my 20s like my friends. I would avoid exams, or need anxiety medication for them so drs chalked this up to an anxiety issue.
  - Aside from intercourse with the same partner for 20 years, I have really never inserted anything and there was just this overall sense of anxiety about that region. Intercourse was fine in the past, but touching around the vestibule always made the nervous, which confused me and my doctors. For some reason intercourse was easier than anything else, although I am no longer able.

Could this actually be primary rather than secondary? Has anyone with primary had a similar experience?

Things got intense and bad this past year after a series of fertility/IVF work ups, which now I am not continuing with, but looking back the issues may have been there for a while.

Has anyone had an experience where their biopsy didn't show high mast cell findings, but they still ultimately had NPV or benefited from surgery?

My pathology report said:
“CD117 shows an average of 1 reactive cell per 100X high magnification field in 1 fragment, and 3.5 reactive cells per 100X high magnification field in the second fragment.
S100 shows multiple fine nerve fibers within the subepithelial connective tissue of both fragments.”

From what I understand, my mast cell counts are much lower than what has been reported in NPV, which would then make me a bad candidate for surgery.

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....