Need advice based on my history and symptoms! I’ve been suffering for nearly a year now
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!