Dr. Jill Krapf

DIV itself can’t be detected through a PCR, as it’s diagnosed by visually seeing inflammatory cells and parabasal cells on a wet mount, along with a high pH and characteristic yellow discharge. However, DIV can absolutely be caused by bacteria, in which case the bacteria would definitely show up on a PCR. Specialists believe DIV can be caused by 3 things: aerobic vaginitis (bacteria), atrophic vaginitis (low estrogen), and an early form of lichen planus. Dr. Krapf diagnosed me via wet mount.

I’m sorry you’re going through this. Birth control pills are known to be a culprit of vulvodynia for some women. So perhaps coming off the pills and trying estrogen cream like you mentioned would help. Dr. Andrew Goldstein is in NYC, and he’s a well-known vulvovaginal specialist. I saw his practice partner, Dr. Jill Krapf, at their office in DC. Their website lists a bunch of conditions that they treat, along with explanations and treatments for each of them. https://www.vulvodynia.com/

I was in the same situation as you. Started with BV. Then a UTI. Then back-to-back yeast infections, with one of those being pretty severe. My end result after treatment was burning, irritation, itching, and redness. Constantly. After being dismissed about 6 times from my regular gyn who said it’s either lichen sclerosus or lichen planus, I broke down and spent the money to go see Dr. Jill Krapf. She diagnosed me with desquamative inflammatory vaginitis (DIV). Initial treatment was a compounded intravaginal cream of hydrocortisone/clindamycin/estrogen. Currently I’m only using intravaginal estrogen cream, and I’m doing so much better. Before I was diagnosed with DIV, I was literally in tears every day from the pain. My gyn also threw clobetasol at me, and that burned me so much worse.

Dr. Jill Krapf is in Tampa, Florida. I’ve seen her before (in Washington, DC) and got diagnosed with another condition, DIV. Dr. Sarah Cigna is in Washington, DC. I’ve been to her office once since Dr. Krapf moved to Florida. Dr. Andrew Goldstein is in New York City. There’s a great book called “When Sex Hurts” and you can buy it on Amazon. Dr. Goldstein and Dr. Krapf both contributed to this book. For primary (congenital) neuroproliferative vestibulodynia, these physicians I’ve mentioned believe that only a vestibulectomy is a cure. Here’s info from Krapf/Goldstein’s website: https://vulvodynia.com/conditions/vulvar-vestibulitis Dr. Jill Krapf and Dr. Sarah Cigna both post lots of great information on their Instagram accounts.

I saw her while she was still in DC. She is great. Diagnosed me with DIV. Since she moved to Florida, I have switched to Dr. Sarah Cigna and her NP, Emily, in DC. Thankfully, Dr. Cigna’s office takes insurance, so I’m only responsible for my copay. The first visit with Dr. Krapf was $1,650, and every single follow up was $500.

Yes, in the very beginning, I had pain with sitting, which I could tell was coming from the sore area at 6:00. That has since gotten better. I have cervical ectropion. While it can be normal, it can also be a potential cause of DIV. My specialist has treated my ectropion with silver nitrate twice. I have been constantly aware of my vagina for the last 21 months. It is awful to be consumed by this 24/7. I totally understand what you are going through. It has gotten better for me, since I no longer have pain with sitting. But I still have irritation and feelings of being raw sometimes. I see a new specialist next month since Dr. Krapf left, and I am going to request labs to check my hormones. Check into DIV. If you can, see a vulvar specialist. I hope you get some answers soon ❤️

She put me on compounded vaginal cream of clindamycin, estrogen, and hydrocortisone. I was on that every day for about 3 weeks and then went back to feeling totally normal. Tapered down after that, and eventually took the clindamycin out of the cream. I’m doing compounded hydrocortisone and estrogen cream 3 times a week now, and my irritation has returned. My follow up is scheduled for October with Dr. Moss for the first time since Dr. Krapf moved to Florida. My pelvic floor muscles were fine when Dr. Krapf tested them, so I didn’t need PT.

Clobetasol made me terribly worse. My regular gyn was thinking I had either lichen sclerosus or lichen planus, which is why I was on clobetasol. It made everything worse. I was diagnosed with DIV by Dr. Jill Krapf, and she started me on the compounded vaginal cream right away. We have since eliminated the clindamycin, so my compounded cream right now is just estrogen and hydrocortisone, and I’m doing well.

I’ve also thought about using the probiotic suppositories. I actually have them from before I was diagnosed. I did an Evvy the day before my appointment with Dr. Krapf, and it came back with mostly Lactobacillus crispatus and other Lactobacillus as well. All my symptoms started after back-to-back infections of BV and yeast last December and January. It feels like a mystery diagnosis. I wish more was known.

I was diagnosed with DIV in September by Dr. Jill Krapf at the Center for Vulvovaginal Disorders in Washington, DC. She put me on the shotgun approach of compounded clindamycin, estrogen, and hydrocortisone to be inserted into the vagina. I started out inserting it daily for 3 weeks, then went to every other day for 4 weeks, and I’ve been on a twice weekly schedule for 3 weeks now. While using it every other day, I had zero symptoms, pain-free sex, and felt normal down there. Now that I’ve reduced treatment to twice weekly, my burning and redness is starting to come back. I believe I will need to stick with the every other day treatment schedule to feel back to normal again.

I started out using the cream every day, she told me for 2 to 4 weeks until symptoms resolve. I ended up needing it every day for 3 weeks. Then I cut back to every other day for one month. I just followed up with Dr. Krapf last Thursday, and I am cutting the cream back to twice a week. I go back in 3 months. She also put me on weekly Diflucan, and next visit she is switching me to oral nystatin to combat yeast. The compounding pharmacy is very quick to get the cream sent out. They’ll even send you a tracking number through UPS. I had it within 3 days. Be careful with squeezing your tube while you fill the vaginal applicator. My tube actually popped open, but I contacted the pharmacy and they sent me another tube free of charge. The pharmacy customer service is wonderful. Dr. Krapf told me 50% of women are able to come off the cream. We are testing to see if I can by tapering it down. She also diagnosed me with cervical ectropion at my initial visit with her, and that alone could cause the DIV. She treated my ectropion with a round of silver nitrate right on the cervix. When I went back last week, the ectropion was gone. It’s nice to not feel alone. If you ever have any questions, please feel free to message me!

Dr. Andrew Goldstein in DC Dr. Andrew Goldstein in DC For anyone who sees Dr. Goldstein in Washington, DC, I was told he’s no longer going to be seeing patients at that office. Their office manager, Hillary, said he’s only going to be seeing patients at the NYC office. I was a patient of Dr. Krapf’s, but she moved to Florida. I was wanting to schedule with Dr. Goldstein, but instead I’ll be seeing Dr. Moss. Does anyone have any experiences with Dr. Moss? Has anyone seen Dr. Rachel Rubin in Rockville, MD?

DIV itself can’t be detected through a PCR, as it’s diagnosed by visually seeing inflammatory cells and parabasal cells on a wet mount, along with a high pH and characteristic yellow discharge. However, DIV can absolutely be caused by bacteria, in which case the bacteria would definitely show up on a PCR. Specialists believe DIV can be caused by 3 things: aerobic vaginitis (bacteria), atrophic vaginitis (low estrogen), and an early form of lichen planus. Dr. Krapf diagnosed me via wet mount.

I’m sorry you’re going through this. Birth control pills are known to be a culprit of vulvodynia for some women. So perhaps coming off the pills and trying estrogen cream like you mentioned would help. Dr. Andrew Goldstein is in NYC, and he’s a well-known vulvovaginal specialist. I saw his practice partner, Dr. Jill Krapf, at their office in DC. Their website lists a bunch of conditions that they treat, along with explanations and treatments for each of them. https://www.vulvodynia.com/

I was in the same situation as you. Started with BV. Then a UTI. Then back-to-back yeast infections, with one of those being pretty severe. My end result after treatment was burning, irritation, itching, and redness. Constantly. After being dismissed about 6 times from my regular gyn who said it’s either lichen sclerosus or lichen planus, I broke down and spent the money to go see Dr. Jill Krapf. She diagnosed me with desquamative inflammatory vaginitis (DIV). Initial treatment was a compounded intravaginal cream of hydrocortisone/clindamycin/estrogen. Currently I’m only using intravaginal estrogen cream, and I’m doing so much better. Before I was diagnosed with DIV, I was literally in tears every day from the pain. My gyn also threw clobetasol at me, and that burned me so much worse.

Dr. Jill Krapf is in Tampa, Florida. I’ve seen her before (in Washington, DC) and got diagnosed with another condition, DIV. Dr. Sarah Cigna is in Washington, DC. I’ve been to her office once since Dr. Krapf moved to Florida. Dr. Andrew Goldstein is in New York City. There’s a great book called “When Sex Hurts” and you can buy it on Amazon. Dr. Goldstein and Dr. Krapf both contributed to this book. For primary (congenital) neuroproliferative vestibulodynia, these physicians I’ve mentioned believe that only a vestibulectomy is a cure. Here’s info from Krapf/Goldstein’s website: https://vulvodynia.com/conditions/vulvar-vestibulitis Dr. Jill Krapf and Dr. Sarah Cigna both post lots of great information on their Instagram accounts.

I saw her while she was still in DC. She is great. Diagnosed me with DIV. Since she moved to Florida, I have switched to Dr. Sarah Cigna and her NP, Emily, in DC. Thankfully, Dr. Cigna’s office takes insurance, so I’m only responsible for my copay. The first visit with Dr. Krapf was $1,650, and every single follow up was $500.

Yes, in the very beginning, I had pain with sitting, which I could tell was coming from the sore area at 6:00. That has since gotten better. I have cervical ectropion. While it can be normal, it can also be a potential cause of DIV. My specialist has treated my ectropion with silver nitrate twice. I have been constantly aware of my vagina for the last 21 months. It is awful to be consumed by this 24/7. I totally understand what you are going through. It has gotten better for me, since I no longer have pain with sitting. But I still have irritation and feelings of being raw sometimes. I see a new specialist next month since Dr. Krapf left, and I am going to request labs to check my hormones. Check into DIV. If you can, see a vulvar specialist. I hope you get some answers soon ❤️

She put me on compounded vaginal cream of clindamycin, estrogen, and hydrocortisone. I was on that every day for about 3 weeks and then went back to feeling totally normal. Tapered down after that, and eventually took the clindamycin out of the cream. I’m doing compounded hydrocortisone and estrogen cream 3 times a week now, and my irritation has returned. My follow up is scheduled for October with Dr. Moss for the first time since Dr. Krapf moved to Florida. My pelvic floor muscles were fine when Dr. Krapf tested them, so I didn’t need PT.

Clobetasol made me terribly worse. My regular gyn was thinking I had either lichen sclerosus or lichen planus, which is why I was on clobetasol. It made everything worse. I was diagnosed with DIV by Dr. Jill Krapf, and she started me on the compounded vaginal cream right away. We have since eliminated the clindamycin, so my compounded cream right now is just estrogen and hydrocortisone, and I’m doing well.

I’ve also thought about using the probiotic suppositories. I actually have them from before I was diagnosed. I did an Evvy the day before my appointment with Dr. Krapf, and it came back with mostly Lactobacillus crispatus and other Lactobacillus as well. All my symptoms started after back-to-back infections of BV and yeast last December and January. It feels like a mystery diagnosis. I wish more was known.

I was diagnosed with DIV in September by Dr. Jill Krapf at the Center for Vulvovaginal Disorders in Washington, DC. She put me on the shotgun approach of compounded clindamycin, estrogen, and hydrocortisone to be inserted into the vagina. I started out inserting it daily for 3 weeks, then went to every other day for 4 weeks, and I’ve been on a twice weekly schedule for 3 weeks now. While using it every other day, I had zero symptoms, pain-free sex, and felt normal down there. Now that I’ve reduced treatment to twice weekly, my burning and redness is starting to come back. I believe I will need to stick with the every other day treatment schedule to feel back to normal again.

I started out using the cream every day, she told me for 2 to 4 weeks until symptoms resolve. I ended up needing it every day for 3 weeks. Then I cut back to every other day for one month. I just followed up with Dr. Krapf last Thursday, and I am cutting the cream back to twice a week. I go back in 3 months. She also put me on weekly Diflucan, and next visit she is switching me to oral nystatin to combat yeast. The compounding pharmacy is very quick to get the cream sent out. They’ll even send you a tracking number through UPS. I had it within 3 days. Be careful with squeezing your tube while you fill the vaginal applicator. My tube actually popped open, but I contacted the pharmacy and they sent me another tube free of charge. The pharmacy customer service is wonderful. Dr. Krapf told me 50% of women are able to come off the cream. We are testing to see if I can by tapering it down. She also diagnosed me with cervical ectropion at my initial visit with her, and that alone could cause the DIV. She treated my ectropion with a round of silver nitrate right on the cervix. When I went back last week, the ectropion was gone. It’s nice to not feel alone. If you ever have any questions, please feel free to message me!

Dr. Andrew Goldstein in DC Dr. Andrew Goldstein in DC For anyone who sees Dr. Goldstein in Washington, DC, I was told he’s no longer going to be seeing patients at that office. Their office manager, Hillary, said he’s only going to be seeing patients at the NYC office. I was a patient of Dr. Krapf’s, but she moved to Florida. I was wanting to schedule with Dr. Goldstein, but instead I’ll be seeing Dr. Moss. Does anyone have any experiences with Dr. Moss? Has anyone seen Dr. Rachel Rubin in Rockville, MD?

I am so sorry your going through this. I have literally been through your hell for 2 years now but mine started after a uti. It’s been the worst thing I’ve ever gone through and I have 3 kids and I’d have my c sections over this pain anyday. I am also now in pelvic floor therapy and on nerve meds. Have you started on any nerve meds orally like amitriptyline, nortriptyline, cymbalta.. etc ? I think your nerves need a break so maybe try one of those. I also recommend going to see Dr. Jill Krapf. I was diagnosed with DIV, and hypertonic pelvic floor muscles. DIV is gone now but I’m left with the worst pain of my life from these muscles and nerves all wrapped together. I know how exhausting this is

Saw yeast under scope Saw yeast under scope I saw Dr. Krapf in Tampa and she saw yeast under the scope and I went to another doctor today and she just looked at my vagina and thinks she saw yeast. She sent it to be cultured but it always comes back negative. My only symptom is burning and burning during urination. If it comes back negative for yeast what would you treat it with? Diflucan dosent work for me but obviously we know the yeast is there.

Diagnosed with Hypertonic Pelvic Floor by Dr. Krapf Diagnosed with Hypertonic Pelvic Floor by Dr. Krapf I burn, itch and burn more so after peeing. I just stopped birth control to hopefully help with the hormone aspect of this. Can these symptoms really be from my pelvic floor muscles? I just can’t seem to believe it. What has helped you?

One more thing- when I talked to Dr. Krapf this year she mentioned that IntraRosa can also be used in place of the estrogen/testosterone cream. This could be a good option for people in Europe that would have insurance coverage for IntraRosa but unable to get the compounded e/t cream. I have not tried it yet and am a little apprehensive because it is an internal suppository and I am sensitive to yeast. But I might try in the future!

Hey sorry to hear you have also been suffering through all these things. I ended up booking a Telehealth appointment with Dr. Krapf in the U.S. and then I pick up my estrogen + testosterone prescription there when I go to visit family. In Germany, I had luck being prescribed estrogen cream. Later I switched to a compounded version in Vaseline because the regular base of the standard estrogen irritated me. However, I was told by the pharmacy that Vaseline is not an ideal base. I had reached out to Klösterl Apotheke. At the time they did not have the methylcellulose base or Ellage base that’s used in the U.S. Instead they use a base that has the same irritating ingredients as the standard estrogen cream (oekolp, for example). To get the Ellage base, people have also gone to the UK. Dr. Tania Adib prescribes the estrogen + testosterone cream. But if you haven’t tried any of those things yet, you could just start with the basic estrogen cream in Germany (Oekolp) For the condition, you need to research hormonally mediated vestibulodynia https://www.prosayla.com/articles/hormonally-mediated-vestibulodynia - that is the main condition being treated by the estrogen + testosterone cream For hypertonic pelvic floor, perineum stretches have really helped me

Yikes that’s strange you could feel it inside! I saw Dr. Krapf and she didn’t say anything about the Mirena. She thought the vulvodynia could have started from Yaz that I took in my early twenties because drospirenone is particularly bad for causing vulvar issues and vulvar atrophy. It’s still a bit weird since I took that one so long ago, but it doesn’t matter to me so much as long as I have a solution that works :)

No problem! I used the estrogen + vaseline in the vestibule (on all areas of the clock) and also in the 12 o’clock area and on the clit. Now I’m using Ellage with estrogen + testosterone and I use it in all the same areas as well as the vaginal entrance. Dr. Krapf mentioned to put it there and to press down to do a perineal stretch

Well, I have been needing to post an update, but keep delaying as things keep changing lol :) I had a major improvement in symptoms to 95% Oct 2024 when I started using an estrogen + Vaseline cream. I realized that the additives to the other creams were irritating for me. Then Nov 2024 I pushed myself to go back to the methylcellulose testosterone + estrogen cream as it was going to expire soon and I wanted to try it again. This time I managed to use it okay and kept the same levels of improvement. End Nov 2024 I had another telehealth appointment with Dr. Krapf and started using testosterone + estrogen in Ellage base starting around Dec 20. So for the last month I feel 100% and I can tolerate the Ellage base. Hopefully I stay that way, fingers crossed! Based on my experience I would recommend experimenting with the bases if you experience irritation. I was also treating sporadically for yeast throughout and Dr. Krapf mentioned the yeast should also dissipate with the hormonal treatment. Let’s see! I hope that’s helpful :)

In the “when sex hurts” book they mention that a vulvar biopsy is only needed in some cases. They can diagnose LS without it or you can start treatment for LS without a biopsy. Biopsies hurt and are annoying so I think it’s totally fine to keep it to a last resort. Maybe don’t do it unless a specialist recommends it. Dr. Jill Krapf is an expert on LS.. you can find her on Instagram

To further add, I don’t think hormonally mediated vestibulodynia is a recognized condition in Germany. Happy to be proven wrong. But the dysplasia office had nothing to say when I mentioned estrogen was helping and when I showed my diagnosis by Dr. Krapf to two doctors here, both acted like they never heard of it. (As far as they know, it’s only something for postmenopausal women)

Hi hi I think you already commented on my other post https://www.reddit.com/r/vulvodynia/s/uKtbqdldPy but I stopped treating with the estrogen + testosterone cream now. I emailed Dr. Krapf to let her know and she said she’s also surprised and I should do an in person appointment. I will try treating with just the estrogen cream for now and see if that works. In the past it was already helping a bit.

Dr. Krapf wanted these tests for hormones estradiol testosterone total (female/child) SHBG albumin Then she would calculate the free testosterone according to ISSM That’s all I know though. I haven’t researched how to interpret the results. But in many cases the treatment would be the same if it’s hormonally indicated- a hormone cream?

I had a good experience! I paid $900 for a telehealth appointment since I don’t live in the U.S. my main goal was to seek a diagnosis since no doctor here could tell me anything besides general vulvodynia. I had purchased her book and read the algorithm but really wanted a professional to tell me which box I was. You fill out a very in depth questionnaire before the appointment and Dr. Krapf was able to go through all the facts and details with me in the hour session I had. Now I am working through the treatment process so I can’t give a full review, but the appointment was great and I think she’s a good person to try if you have already tried a lot and need to see a specialist.

Irritating compound estrogen/testosterone cream? + my story Irritating compound estrogen/testosterone cream? + my story Hi all, I’ve recently gotten more involved in this subreddit so just wanted to share my story in case it helps others and to get help where I’m at. I’m 35F, I was on Yaz for about two years in my early 20s and then 11 years of Mirena IUD (two iuds) up to and including now. I had a history of many yeast infections, UTIs, and one case of ureaplasma in my 20s to early 30s. About four years ago after the last infection I could not get my sex life back.. pain was usually around the opening.. 5 and 7 o’clock spots. Then in the last year I developed irritation in my inner labia around and above the urethra and into the clit. I had a biopsy which showed nothing. With my doctor we basically experimented with different creams.. strong steroids were not helpful but estrogen based creams seemed to work. I was sporadically using a strong estradiol + prednisone cream (called Linoladiol here in Germany). It helped for sure, but after 5 months on and off we decided to try to switch to something else. (My doctor was more concerned about the estrogen content.. me more about the growing dependence on and long term use of steroids). So I’ve been using an Estriol cream every other day the past two months. I was able to get a telehealth appointment with Dr. Jill Krapf and she thought it was hormonally mediated vulvodynia and it was great to get a diagnosis! She prescribed the estradiol + testosterone cream compounded in methylcellulose (alongside pelvic floor therapy) and I was just able to get my hands on it end of November while in the U.S. I was excited to finalllllllllly try this cream- what I heard was the best of the best. But it seems like I had a problem transitioning from the Estriol cream to the E/T compounded one. I used the E/T cream for six days in a row before having to stop due to a flare/symptoms getting worse. I had one or two days just before transitioning where I felt really great and even had sex. But now I’m back using the Estriol cream to heal up again before trying the E/T gel again. I’m really not sure what happened. Did I flare due to stopping the Estriol cream? Was it due to adding testosterone? Is it the methylcellulose base? I guess it can be irritating in the beginning but hard to decide how much irritation to put up with. I was really surprised because I thought the methylcellulose base was super anti-irritating. I’ll just keep chugging along and experimenting. I haven’t started pelvic floor therapy yet and will do that too. Any tips or input is welcome!

I also have elhers danlos and vulvodynia. I got a single infection and boom I had chronic pain. I think there’s a correlation to elhers danlos and vulvodynia somehow. My specialist (dr Jill Krapf) said they aren’t quite sure what the connection is but they see patients all the time with Eds come in with vulvar pain!

Wow our stories are IDENTICAL. my jeans don’t usually hurt unless I crouch too. I thought it was me who wrote that!! It was that similar. I never had pain. And then I had one minor infection (still don’t know what it was) and the pain never went away it is a soreness like pain. Stinging burning and it fluctuates. Like you said the disharge doesn’t always sting it definitely is different depending on the flare up flare down scale. I got diagnosed with hormonally mediated and severe hypertonic pelvic floor. I’m 18 and have never been on birth control. But I got diagnosed by Jill Krapf in DC. They saw vulvar atrophy and blood test hormone levels were off (free testosterone and sgbh) I’m not sure what the levels were. I also have EDS which they said is common in vulvodynia patients but they aren’t sure why yet. I know it caused my tight muscles cause I’m also an elite athlete and I have been my whole life which has messed up my body overall. I haven’t found a single person with the same experience as me except for you!! I know we will beat this!! Stay positive!!!

I also have the burning stinging sensation around my barthloins glands and they are red and inflamed. I went to Jill Krapf and she diagnosed me with hormonally mediated vestibulodynia and atrophy along with pelvic floor hypertonicity. I get stinging when discharge or period blood hits the area. I was given estridol and testosterone gel. I have been using it for 3 weeks and haven’t noticed a huge difference or any at all. But they told me it would take 3-6 months to feel better. I also was never on birth control and I’m only 18 so not sure what caused it. Who diagnosed you and treated you? How long were you using the estrogen cream? And how did your pain start?

I got diagnosed with hormonally mediated and hypertonic pelvic floor by dr Jill Krapf in DC. For some reason I’m having a hard time trusting that diagnosis probably because many other doctors have been wrong. And because I have no reason to develop hormonal problems as I was never on birth control and I’m only 18. But she said I had moderate atrophy and severe erythema and my blood tests showed low hormones. (I don’t remember exactly what was low). but typically hormonal vestibulodynia is slow developing while mine started overnight basically.

I got diagnosed with hormonally mediated vestibulodynia and hypertonic pelvic floor. But mine was not caused by birth control and I’m only 18 so it’s kind of a mystery. I got diagnosed by Jill krapf at the center for vulvovaginal disorders so I trust their diagnosis. My lab work showed low hormones (I’m not sure exactly what was low). My symptoms are fully provoked stinging, burning that flares up and down. Hurts to wear tight clothing, to sit a certain way, and when liquid hits the area. My greater vestibular glands are often red and very painful (the barthloin glands I believe) but the redness flares up and down. They told me I had some small fissures as well.

Treatment ?? Treatment ?? I got diagnosed with hormonally mediated + pelvic floor dysfunction vulvodynia. the thing is I was never on birth control and I am only 18 so it didn’t make much sense to me. Mine also started suddenly with a single minor infection. My barthloin glands are red and painful and the skene glands are also more tender than other areas on the vestibule. I feel pain when any pressure is applied or any liquid hits the area. It can be a sharp stinging burning or a rawness soreness sensation. I can’t wear jeans or sit properly often especially when it’s flared up. But it’s only provoked I don’t have unprovoked pain. I am currently doing testosterone/estridol gel 1 week so far along with Pelvic floor pt and Zoloft. I was diagnosed by dr Jill krapf and dr Moss in DC. I have been an intense athlete since I was 4 and never stopped playing sports. They believe this could have contributed to the hormonal aspect. Also, my blood work revealed low free testosterone and issues with the SBGH. I’m not sure the exact issues with it but they said it is consistent with my diagnosis. Has anyone had a similar experience? Symptoms? Treatment? Has the gel worked for you??

Hormonal treatment Hormonal treatment For those with hormonally mediated vestibulodynia or those who tried hormonal replacement therapy. How successful has testosterone/ estridol gel or cream been for you? I have hormonal + hypertonic pelvic floor related vulvodynia and my pain is fully provoked but affects my daily life not just penetration. (Ex; sitting, tight clothing, liquid stings). I was never on birth control and I’m only 18. But my hormone levels were off in my lab work and I got diagnosed by Jill Krapf at the center for vulvovaginal disorders so I trust that this is what’s going on. I apologize for posting SOOO much on here, but it kinda brings me comfort!

Does anyone have similar pain? Does anyone have similar pain? Does anyone have these symptoms? And if so what was your exact diagnosis or cause for pain? Provoked vestibulodynia: Pain with any kind of pressure to the vestibule described as soreness, burning, general discomfort, stinging. This could be from crouching with jeans on, sitting with jeans, sitting in general, moving while seated, going from lying down to sitting up, tight clothing while exercising, Tight underwear. Pain with direct touch SEVERE BURNING AND STINGING specifically in the lower 2/3 of the vestibule and on the 4 to 8 o’clock positions and 6 o’clock position. Extreme stinging sensation (like acid poured on a cut) when discharge hits the area or pee or period blood or any liquids. If I lean forward while seated I often feel this sensation. Redness of the barthloin glands and lower vestibule. Skene glands and barthloin glands are the most painful areas of the vestibule but there is pain throughout. Skene glands not red. No pain of the urethra (no uti sensation) maybe some slight discomfort. Clitoraldynia: provoked flares up and down. cannot touch the area at all without electric shock pain. Started at random two weeks after vestibule pain. Hurts sitting certain ways. History: No pain prior to this which started one day with a single infection (possibly) 5 months ago. never found out what it was. 18 yrs old never on birth control. Athlete my whole life. Has Hypermobile Elhers Danlos Syndrome and POTS. Diagnosis: Hormonally mediated vestibulodynia and moderate atrophy. Severe hypertonic pelvic floor muscles. Mild Pudendal Neuralgia from the tight muscles. 50% clitoral phimosis. Labs showed hormone levels were off, supported hormonal diagnosis. I don’t believe they were severely off but possibly enough to cause a problem. Diagnosed by Jill Krapf. I am doubtful of my diagnosis and am looking for others who have similar symptoms! Please help!!

Vulvar atrophy Vulvar atrophy I am 18 and was diagnosed with hormonally mediated vestibulodynia by dr Jill Krapf. But I was never on any kind of birth control. They related me being an intense athlete my whole life to hormonal problems. My pain started after a single infection. Most of the pain is in the 6 8 and 4 o’clock locations. If I press on it it burns like crazy like a rug burn. Also I feel it if I sit up in bed, wear jeans, sit in anyway that puts pressure on that area. Like sitting up in the car. It is so uncomfortable. I also get sharp stinging when liquid hits the area sometimes it’s awful. Visibly the vestibule looks a little pale and when I bear down I can see the inside of the vagina and it’s kinda whiteish. The area around the barthloin glands is very red and extremely tender. I see what looks like a tiny cut or two. But maybe they are the barthloin gland openings. I’m not entirely sure. The skin itself is definitely shiny and is tender to light touch. But just pushing lightly on the 6 o’clock area sets off immense burning. It’s been about 3 weeks since I started the hormone gel and the redness doesn’t look as severe but the pain is still the same. I am struggling to stay positive. Does anyone have similar symptoms and visible characteristics with hormonally mediated vestibulodynia?

Hii! thank you :) I tried e/t cream for 2 months and it did nothing so hormone wise it’s not that. And i tried clobetasol 2 times for 2 weeks and my doctors in my country said that was enough to see if it was lichen. Also seen Jill Krapf in real life and shes a lichen expert and she said it wasn’t that. I take the second to highest dose of lyrica which is the same as doing gabapatentin cream locally but its orally and the effect should be the same but i am not noticing real difference locally. So yeah 🥲

Ah! I am from The Netherlands and they don't do a vestibulectomy here. So i have to pay everything out of pocket :( No insurance that you can get here covers non emergency healthcare outside of Europe. Can I ask you do you maybe know Yee's prices without insurance? It would really help me with making a decision on who to see next, since Jill Krapf has diagnosed me.

I need your help - years of vestibulodynia and no luck I need your help - years of vestibulodynia and no luck Hi, I’m Sam 22 years old and I have had this since i was 17. It started with miconazol thrush yeast infection cream from the doctor, and then the burning happened and it never left. I have unprovoked vulvadynia and I have been in pain ever since, every day, almost 24/7. I’m from Europe and last April i went to Jill Krapf in the US. I tried e/t cream for 2.5 months hoping that my pain is due to lack of hormones in the tissues, but no luck. I also did PT everyday at home for months but it didn’t help, not even for 1%. I went back to university after having to quit last year and everyday i am fighting the tears and I just go. But I’m not sure how I will keep this up when i have to do an internship in February. I’m mourning the live i thought I would have everyday. My boyfriend is very sweet but I feel like I’m disappointing him and my family. I’m currently on 150mg pregabaline (lyrica) with no luck. Only maybe the pain in my legs has been a bit better. The soles of my feet also burn always. I’m also now trying DHEA every other night but it hasn’t helped yet. I have seen a lot of gynecologist and none have really offered anything to help me. I don’t have the money to see Jill again or do a follow up online. I have lost all hope and my heart cries everyday. I have tried TMS the mind body syndrome. Whenever i touch my vulva, it burns for days after. And even if i don’t touch it. I think it must be neuroprolatife vestibulodynia since it started with that yeast cream years ago. Please let me know if you have any suggestions. Honestly any kind words are appreciated because I feel like making an end to it even though i have had mental help too, they say they don’t know how to help me anymore. Lots of love to all of you 💗

Surgery in US, im from EU Surgery in US, im from EU I have been seriously considering an vestibulectomy, but in my country in Europe they don’t do them. I looked at nearby specialists in Belgium but they stopped taking new patients. I really want a surgeon that is very skilled and has a lot of experience, so I’m considering the US. My family lives there in Florida and I saw Jill Krapf there. But how much is it going to cost approximately? Because I’m not sure if I can even afford that , and my insurance here doesn’t cover US costs. I’m so sad. I can’t even start a go fund me or anything because it’s such an intimate problem I don’t want people I know to know about. Please let me know

Jill krapf consult, probably need surgery Jill krapf consult, probably need surgery I’m 22 and have been dealing with constant vulvar burning (24/7) for 5 years. It all started after a severe reaction to miconazole about five years ago. Since then, nothing has helped ;hormones, E/T cream, Interarosa (only gave me repeated yeast infections), pelvic floor therapy, fluconazole cycles, pregabalin (helps deep pelvic pain but not the burning), nothing. In my country (Netherlands), doctors don’t recognize different subtypes of vulvodynia, don’t offer compounded creams, topical gabapentin, mast-cell protocols, or any of the treatments that are common in the US. They usually say “just do PT” and that’s the end. I’ve been working with Dr. Jill Krapf in the US, and after reviewing everything again this week, she now thinks I most likely have acquired neuroproliferative vestibulodynia and that I will probably need surgery (vestibulectomy) at some point because my burning hasn’t responded to any conservative treatment. She also said i could participate in a trail with ketotifen, but she doesn't know the outcome of that yet (because it's a trail) I’m scared, but also relieved someone finally sees what’s going on. Now I’m trying to figure out what my next steps are, how to prepare, and where to have surgery since I’m in Europe and don’t have US insurance. What do I do? What would you do. I'm scared and sad that I need surgery probably but I also would love to try the trail, but I can only take free time from January till September. Please let me know <3

Goldstein vs Irwin for NPV surgery, experiences? Goldstein vs Irwin for NPV surgery, experiences? Hi everyone! I could really use some advice and personal experiences. I’ve been dealing with vulvodynia for almost 5 years now. I recently had an appointment with Dr. Jill Krapf and she strongly suspects neuroproliferative vestibulodynia (NPV). I already tried hormones (estrogen/testosterone cream) exactly as prescribed, but unfortunately there was no improvement at all. Next step might be trying ketotifen cream because mast cells could be involved. But… if that doesn’t help, I’m considering surgery. Dr. Krapf is referring me to Dr. Andrew Goldstein for surgery, and I know he is really experienced with NPV. But I’ve read quite a few comments saying he can be strict and his bedside manner is a bit harsh. At the same time, if I go through him after being evaluated by Krapf, I think it saves money because I wouldn’t need another full work-up? But then there’s also Dr. Irwin (I see his name mentioned a lot here), and people seem to say he’s gentler and very skilled, especially with things like Bartholin gland cysts happening during/after surgery and knowing exactly how to handle that. Does anyone have experience with Goldstein vs Irwin for vestibulectomy and overall care? If you saw Goldstein was his demeanor okay? If you saw Irwin, did you feel safer with him? I just want to make the best decision for a procedure that is already emotionally and physically huge. Any tips, advice, or personal stories would mean a lot. 💛 Thank you so much!

I’m spiraling because of surgery and can’t stop being sad I’m spiraling because of surgery and can’t stop being sad Since I heard from Jill Krapf that I may be needing surgery for my unprovoked neuroprolatife vestibulodynia I have been so anxious and literally been researching surgeries and surgeons all day every day. I just make myself crazy and I’m so sad and scared. I really wonder if that’s normal. I am from The Netherlands so the surgery would be completely paid out of pocket and what I’m looking at is 13k+ is what i saw online and im so scared. What if i can’t do that? I don’t know how I manage all of this while not living in the US. I don’t know if i can do this anymore. I’m 22 and im always in pain and I just don’t even know if the surgery will take that away. I don’t know what surgeon to pick. My head is just spinning and I have no one who understands. I’m just always crying. How will I manage all of this. Will I ever be painfree and happy? It’s been a long 5 years

Alyssa Yee or Irwin Goldstein, Please help Alyssa Yee or Irwin Goldstein, Please help Hi all, I have been recently diagnosed by Dr Jill Krapf (Tampa). I'm from the Netherlands. She said I have acquired neuroprolatife vestibulodynia that happened due to monistat 5 year s ago. She recommended me to see Andrew Goldstein for a vestibulectomy, but after reading the bad reviews I really don't feel comfortable. I have looked into Irwin Goldstein and Alyssa Yee. Irwin seems sweet but I have recently seen more reviews pop up that are not as positive, especially with buccal graft (that i will probably need). I also think that 75 is quite old for a surgeon (im not trying to be mean, its just my anxiety). I really wanted to go to Alyssa Yee but she really doesn't have a plan for international patients. The earliest appointment for a consultation would be in June, and it would be only 1 hour. I really need a VAT test performed and i called the office multiple times and they couldn't say if she would have time for that during that consultation. I'm from the Netherlands and going to San Diego would cost me and my family thousands which breaks my heart. I can fly out once and maybe twice, but not three times. There are no other specialists in my country or Europe that perform vestibulectomies with up to date techniques btw. I really want to see Alyssa, but I'm not even sure that if I would go to that consultation that that would be enough before surgery and \*when\* she could do the surgery after that (like how many months in between). The office isn't of much help and I feel so stupid and awkward when I call them to ask these questions. They have no e-mail. Even calling them costs me so much money but I don't have another choice. I wish with my whole heart that I could see Alyssa and do my vestibulectomy with her and I wish i could just talk to her myself for 10 minutes and ask for a plan. I don't know what to do, I'm really sad and my head is spiraling. Who do I choose and what do I do? I don't want to wait so long either because I want to go back to school and not be in pain anymore. With all my love to you all, Sam

I’ve seen a number of specialist in California and no one was able to diagnose or offer any treatment that worked. I also have Kaiser so I made the decision that if I went to another out of network provider it would be Dr.Krapf. I know how it feels, I’ve spent thousands on this, but I don’t regret spending a penny at the CVVD. You could potentially reach out to them and see if they recommend anyone specific in California before taking the leap.

I was also diagnosed by Dr. Krapf for hormonally mediated vestibulodynia and hypertonic pelvic floor. I saw a big improvement my first few months of using the gel and then had a terrible relapse in pain. I believe it was due to me slacking on pt exercises and not refilling my compound subscription in time (it expires quickly so make sure you’re ordering your next one ahead of time) I think at this point when everything is so aggravated you have to be on top of your treatment even when things feel better. I have a tendency to think it’s gone for good after a a few weeks of no / low symptoms. The gel also took some time to work and even then it never felt like this “Aha moment” of its finally working. Take your time and be patient. I truly believe Dr. Krapf knows what she’s doing and I’m incredibly grateful for her work. Happy to chat and answer any other questions you have!

My very honest recommendation is to save your money and cancel your appointment and book an appointment with Dr.Krapf at the Center for Vulvovaginal disorders. If I could go back in time and tell myself to that I would. Dr.Fowler is a waste of time, and frankly somewhat of a scam. Feel free to message me if you have any questions

Thanks so much for all the info. So was the follow-up appointment $1,500 as well? That entire process sounds pretty terrible but worth it if it's going to help, which I really hope it does! As far as PT what exactly do you do? because I see my physical therapist once every 2-3 weeks and she does some internal work and feels around while she tells me to relax my pelvic floor and then sends me home with exercises from youtube. is that pretty much it or are other physical therapists more involved in any way? I actually recently received my protocol from Dr. Fowler. Not sure if you've heard of him but I'm starting to think he's a fluke because his test results completely contradict every vaginal swab / test I've had in the last 7 months. I'm going to try to get the next available appointment with Dr.Krapf ( I imagine it's months out) and have it as a back up.

Thats a really good explanation! I figured that testosterone couldn’t drop the same way it did in women like us who were on birth control, just from the shbg factor alone. Because if it did, women everyone would be experiencing horrendous symptoms like we did, it would be an epidemic. I really hope that women’s hormones are studied more in the future. Just health in general. This whole experience taught me that doctors really are just “practicing medicine” and 99% of the time not getting to the root cause. That angers me so much and it needs to change. It makes me want to get into the medical field just for the sole purpose of making sure nobody goes through what I did again. I constantly tell my friends and family Reddit saved my life. I can’t imagine what I would have done without this platform. I was going to all the right doctors, and all of them were telling me to try treatments that weren’t helping or “sorry I don’t know how to help you.” As a 19 year old girl, that scared the shit out of me. Even searching the internet didn’t help. Finally I saw a Reddit post one day on safari and clicked it, and I was like holy shit these people have the same symptoms as me, I’m not alone. That right there was everything, even if I didn’t have a solution yet, I didn’t feel alone. Then I found out about Dr. Krapf from Reddit, and found out she is a 3.5 hour car ride from my home, but she cost an arm and a leg to see. So I went to my grandmother who is a retired teacher, who doesn’t have that much money herself, and I cried to her and told her about Dr. Krapf and how she’s my last option and I have to go to her. My grandmother was able to help me, and I was able to go, and it gave me my life back. And all I did was get on the E/T gel. I had to drop out of college, move back home, quit working, end a lot of friendships, watch my relationship suffer, watch me slowly lose myself, alter the course of my life, and it all could have been solved immediately if doctors were more educated on the matter and just prescribed me the right medication. Wow. That’s infuriating to me. I always think to myself “Thank you God that I live in the time that I do,” because I think about the women, like you, who were affected by this before Reddit was a thing, or before specialist in this field existed, or before the research was done. I really do cry thinking about it, and I’m so sorry that you’ve suffered so long. I can’t express my sorrow for you in words. It’s not right, and I hope you have found some relief now, or if not, can soon. I’m thankful to the universe for Reddit and people like you who posted on her, because if I hadn’t found it, my symptoms were so bad, I’m not sure if I would be here alive today. Sorry, that was a lot, but I just needed to vent.

Thank you for taking time to read and respond! I am seeing Dr. Jill Krapf. I feel pretty confident in her since she's a vestibule specialist. I think the goal is for me to come off of it completely. I am 21 years old, vestibulodynia started at 19 years old, after being on hormonal birth control for two years (17-19).

I totally understand why you would be apprehensive to go pay a boat load of money to somebody especially if you’ve been literally failed by doctors so many times. I will say though, I really would research Dr. Krapf and look into it. She is part of the center for vulva-vaginal disorders and her whole practice is helping people with these disorders. I really do think she would be worth the visit in your case so she could 1) tell you what is going on whether it is lichen or hormonal and then 2) give you the proper medication because for example if it’s hormonal - a lot of gynos don’t even know what the compounded E/T gel even is from my experience. I wouldn’t be advocating for it so much if I didn’t think it could be worth your time. If you want to research her you can go to her instagram, her website, and she has a book called “when sex hurts” I’m not sure if you’ve heard about it - but it goes into detail about different disorders and how they would treat it. lol I sound like I’m advertising her but I was apprehensive about seeing her too at first- from having bad experiences with doctors and because she cost so much money. So I researched her through the platforms mentioned above so I thought it might be helpful for you too. Wishing you all the best in healing.

Thanks for sharing! Would you mind answering these questions for me if it’s not too much? Do you know the cause of your vulvodynia/vestibulodynia? If you took birth control, do you think it’s the cause of your problems? Also have you seen any improvement on the E/T? Sorry for bombarding you with questions, just trying to compare you situation to mine since you go to Dr. Krapf too :)

I agree, it’s extremely expensive and the fact that they don’t take insurance sucks. I haven’t been able to have a job for over a year due to this condition, because I couldn’t walk without the burning/tearing sensation, so I couldn’t afford the appointment myself. However I did my research and everyone said she was worth it, so I was so desperate that I went to family members and told them what was happening (nothing like discussing with family about vulva problems :,) and she was able to help. After seeing her twice now, I would definitely say going to Dr. Krapf is 100% worth it. I know it’s an insane amount of money for an appointment, but I really do believe she is worth is because she really knows all things vulva/vestibule.

First of all- I’m so sorry to hear what you’re going through. I’ve been going through a similar experience too. I also have had the “burning with walking sensation” and for me I would get sort of micro-tears simply from walking too. So I can relate to your pain. What I first started doing was applying aquaphor just all over the labia and vestibule. This definitely helped me be able to walk more, but still relatively short distances. But this wasn’t fixing the problem at the route. I knew it was a deeper issue so I saw a specialist: Dr. Jill Krapf in Tampa, and she thinks my problem is hormonal due to me being on birth control and I’ve been on an E/T compounded gel for three months now. I definitely have noticed improvements, but she said I’ll hopefully notice 60-80% improvement in 6 months and 90% or more in 9 months. If you haven’t already tried it, I would definitely consider a compounded cream or at least going to a doctor that is a specialist in vulvodynia/vestubulodynia - because in my opinion, regular gynos didn’t know how to help with my issue all that much. I had one gyno, who was a 70 year old man tell me ”I’ve seen over 100,000 vaginas in my career and don’t know what is wrong with you” and he was supposed to be a specialist associated with a prominent university, and so it obviously freaked me out. But I researched and found Dr. Krapf, and all it took was just going to a doctor that actually knew what she was talking about and I started getting answers. So don’t give up even if a doctor is saying otherwise. Sorry for the rant and sorry if this advice isn’t beneficial to you or if you’ve already tried this and it didn’t work. I just wanted to throw out what is working for me. Wishing you all the support with this journey.

Yeah, my biopsy result basically just said benign hyperplasia. I did it because the doctor I was seeing at the time wanted me to start the ultra potent steroids that they give for LS, but I was hesitant. I’m glad I didn’t. My skin definitely looks a lot thicker and healthier now, but I still have pain on application. I think it’s only decreased slightly if it has changed at all. Dr Krapf is really confident that the pain is caused by pelvic floor hypertonicity, so I got pelvic floor Botox injections 2 weeks ago at the same time I was prescribed the hormone cream. She said I will most likely need another series since mine was so tight. I was kind of shocked by this because I’ve been in pelvic floor PT for 4-5 months already and HPF was the one thing I thought surely wouldn’t be the answer. My PT is great too. Dr krapf said she often sees patients where PT is never enough! I never had itching before I started the cream. I have had a little bit of itching since I started applying it, which in my understanding is caused by the tissue healing. My cream is 0.01% estradiol/0.1% testosterone in methyl cellulose gel. I apply a pea sized amount over the entire vestibule (including the urethra because I have urinary symptoms as well) and inside the vagina up to one knuckle deep. I apply it twice daily. Dr krapf said with these conditions, it can take a long time to feel better. She told me she expects a 40-50% improvement by 8 week, and 90% improvement by 9 months! It’s so hard waiting when I’ve already had pain for so long but I feel so much more confident in working with her than I have with any other doctor ! I hope your treatment works for you too :)

Hi! I had vulvar biopsies taken a few months ago. My doctor took three punch biopsies from different parts of my vulva for suspect LS. I had general anesthesia for my biopsy, because the spots he was taking from were extremely painful. So I didn't feel anything for the actual biopsy. When I woke up, I don't remember being in much pain either but I was loopy. I had a little bleeding/spotting for the next few days. I found that the 800 mg ibuprofen I was prescribed was sufficient for the pain for the next week. I think I took it twice a day. The advice I can give that is different from online is that the healing process took way longer than I thought it would. My doctor said I should be better within 1-2 weeks. My vulva didn't return to its baseline level of pain for at least 10 weeks. I definitely could not have sex during that time. I'm not sure if this is normal or if this is due to the disease process I have going on. My biopsy was negative for LS. I ended up seeing a pelvic pain specialist (Dr. Jill Krapf) who diagnosed me with hormonally-mediated vestibulodynia and hypertonic pelvic floor. Turns out, my vulvar skin was white and peeling due to hormonal deficiency. It looks completely normal now after 2 weeks of estradiol/testosterone cream application. Good luck with your biopsy, I hope everything goes well!

Thanks for the reply! It just feels like odd timing that I didn't have any bleeding at all for six weeks off BC, then immediately when I started the estradiol the spotting started. I'm hoping it's just a transient side effect? My doctor refused to do the testosterone combo, so I'm just happy I have the estradiol for now. I have an appointment with Dr. Krapf in Tampa so if she also thinks it's hormonal, I'm sure I can get the full E/T cream after i see her. Appreciate the advice!!

Thank you for your response! Yes, I am 26 now. And I never have frequency, just burning! I don't go to the bathroom any more than I did before, except that now I drink much more water because I always feel like I need to be flushing out my bladder. My urination seems to hurt more when I urinate small amounts so I try to get my bladder full before I go. Yeah the cystoscopy situation was so weird - I was awake and they used lidocaine gel but oh my god it hurt soooooo bad and he told me it's not supposed to hurt that badly. Then he said I must have pelvic floor dysfunction because of how tight it was. But I have read other people experiencing pain with cystoscopy on here, so what gives. My plan is to have another one done but under general anesthesia! Like you, I am also just trying to avoid bladder irritants as much as I can, which for me the only consistent ones I have are vaginal penetration and alcohol. Which SUCKS lol goodbye sex life and drinking.... I got engaged this year and although I am still super excited it's hard to imagine that I will be the only sober one at my wedding and then we might not even be able to have sex that night if I'm having a bad day. I feel your pain with the birth control, I've had so many doctors just tell me to take it for a million different things but it has never helped anything and I'm pretty sure it has made some things worse. The hormonal cream has definitely helped a LOT with my vulvar symptoms but hasn't touched the urinary ones unfortunately. Dr. Jill Krapf was amazing for my vulvodynia, but at my last visit when I told her my urinary symptoms hadn't changed, she told me that she couldn't help with that because it was outside her specialty. Which was frustrating because I have had such trouble finding good doctors, and now I'm on another waiting list for months to see a doctor who might not even help. Bouncing back and forth between gynecologists and urologists and urogynecologists - it's getting old haha! Best of luck on your health journey. I'll be sure to post again if I find out anything helpful!

Has anyone got a diagnosis other than IC? Or can give me any hope lol Has anyone got a diagnosis other than IC? Or can give me any hope lol hey everyone, first-time poster but long-time lurker of this sub. Now approaching two years of chronic illness hell and finally got around to making a post. Maybe this is just the last step of my denial phase before I accept that I really do have IC. I've experienced all the same battles with the medical system that the rest of you have, and have had to drain so much of my time doing my own research so I can advocate for myself. This subreddit and others (pelvic floor, vulvodynia) have been really helpful, so I want to say I appreciate you all. I just want to ask if anyone has any experience getting a diagnosis of something other than IC, or if I should just give up on trying at this point. My symptoms started about two years ago with two back-to-back UTIs in six weeks (confirmed positive for E. coli on culture). I have always been prone to post-coital UTIs so I know the drill. I got antibiotics and the classic UTI symptoms cleared up somewhat but not fully. Since then, I've had chronic pain - mostly urethral, but also sometimes bladder - that is unresponsive to literally anything except ice packs. I never have urgency or frequency. I don't get up to pee at night. The pain was mild at first, but now I have days that are quite painful. I can't seem to find any rhyme or reason as to why one day is bad and the next is good. One day I'll have alcohol and soda and tomatoes or anything and be completely fine. Then I'll have a day where I eat "good" and my urethra is on fire. If I do have pain after drinking, the pain doesn't usually set in until late in the next day, like 20 hours later, which doesn't make sense to me. I've seen a couple urologists, one of which attempted a cystoscopy, but couldn't get the scope through my urethra (he kept saying it was too tight?) which is when I started pelvic floor therapy. My other urologist suggested I try praying! Several months after the urethral pain set in, I also developed vulvodynia (womanhood is so fun, right?). My already sad sex life with my loving long-term partner vanished. Nothing touched that pain either. Patches of my vestibule started peeling off in white flakes. Other parts were red and raw. My gyno suspected lichen sclerosus so I got 3 huge punch biopsies taken out of my vulva, right at the most painful spots (yay). The biopsies basically showed nothing. Finally, I saw a pelvic pain specialist (Dr. Jill Krapf in Tampa, FL). She said that I likely had a combination of hypertonic pelvic floor and hormonally mediated vestibulodynia. I had already been in pelvic floor physical therapy for 6 months at that point with no improvement, so I was skeptical. She said some people are just so tight and painful that they just need Botox to make progress. So I got pelvic floor Botox and started putting an estradiol/testosterone gel on my vulva. I also stopped taking my hormonal birth control pill. Within two weeks, the white peeling of my vulva completely resolved. Within eight weeks, the Botox was fully set in and my vulvodynia was 80% improved, with only minor pain and small red patches at my posterior gland openings (she said that part would take the longest to resolve). However, I was devastated to find that my urethral and bladder pain was untouched. I wanted so badly for everything to be caused by one thing. Like if I fixed the pelvic floor, it would get better. Or if I supplemented hormones it was needing. I struggle to imagine a happy life where I have to carry this burden. I was only 24 when everything started. And maybe I could swallow the IC diagnosis a little better if I had any hope that something could reliably ease my pain. Anyways, I've been wondering if any other diagnosis could cause the symptoms that I have. I'm thinking about attempting another cystoscopy just to rule out other stuff, but is there even anything else to rule out? I don't want to pay for a useless test. I've had two vaginal ultrasounds in the last year, both of which showed polycystic ovaries. Could that somehow be related to anything? I also have gone six months off my birth control with no sign of a period yet. Not sure if that could mean something. I already went down the chronic UTI, Ureaplasma, pudendal neuralgia, and pelvic floor rabbit holes. Other unexplored rabbit holes right now are endometriosis and PCOS. Diagnostics I've had: Cystoscopy (attempted), urine PCR panel, bladder/kidney ultrasound, Ureaplasma/Mycoplasma (positive for Ureaplasma, then had verified cure), yeast/BV/Trich tests, vulvar biopsy, vaginal microbiome testing, urethral MRI, urethral swab PCR Treatments I've tried: Pelvic floor PT, dry needling, AZO, Cystex, Uribel, OTC nsaids, baking soda water, Prelief, D-mannose, topical lidocaine, antibiotics, feminine health probiotics, Hiprex, diflucan, baclofen, pelvic floor Botox, gabapentin, amitriptyline, topical estradiol/testosterone, hormonal birth control pills, Kyleena IUD, hydroxyzine, cetirizine, IC diet, 100% cotton underwear only, drinking tons of water, fragrance-free laundry detergent If you've read this far, I appreciate it. Any advice is welcome!

yes! desquamative inflammatory vaginitis hormonally-associated vestibulodynia overactive pelvic floor muscle dysfunction pudendal neuralgia i really recommend jill krapf’s book (co-authored by andrew goldstein, caroline pukall, and irwin goldstein) “when sex hurts: understanding and healing pelvic pain” that goes into all of these conditions and more. it’s written in an accessible format for patients. happy to answer more questions always, there’s just so much to say in every post.

i love jill krapf. i followed her on socials for years before a different gynecologist told me the same thing, that she could no longer help me, and referred me to a vulvovaginal specialist. krapf was said specialist, and after suffering and being dismissed my whole life, she immediately and accurately diagnosed me with 4 different conditions during our 3 hour consultation. she saved my life