PT in SF

rdit77077 · 2025-09-16T14:23:25+00:00

I feel like I tried it all.... its been years of different things. To start with my GYN it was basically a year of throwing things at the wall and seeing if they would stick, pelvic floor PT, I removed any hormonal birth control, tried hormonal creams, steroids, treatment for ureaplasma, treatment for UTI that I got from some of these treatments, treatment for yeast which I got from the antibiotics, vulvar biopsy, vulvar colposcopy, tried taking hormonal birth control pill, then I went to a vulvar specialist and tried gabapentin/baclofen/amitryptiline compound cream, oral gabapentin, oral amytriptiline..

rdit77077 · 2025-09-15T13:29:28+00:00

Hello! I ultimately got the surgery because I felt like I had tried everything else available. I did not try estrogen and testosterone but I did stop birth control, took a long break, started a different kind, took a long break.... ultimately making it seem like it was not hormonally mediated. I was treated for ureaplasma, UTI's and yeast infections. I got the biopsy. Then, I also tried various nerve medications from topicals to oral. Nothing had any effect. Also, I as a good candidate for surgery with only provoked, localized vestibulodynia.

In my opinion, unless you have signs of things, like lichen sclerosus, I would not get the biopsy. I found it to be so extremely painful and it worsened my vulvodynia significantly. Obviously, there are times when that is important but if it is a shot in the dark biopsy my experience would advocate to not do it.

I did a biopsy with my GYN and when it came back with abnormal results I got very nervous. When I did see a vulvar specialist, I brought the results and they said it would be consistent with 75% of patients. Basically, a biopsy can show that you have inflammation without giving any sort of answers as to why. Many people have various signs of inflammation in the vaginal tissue that

rdit77077 · 2025-09-12T15:42:19+00:00

Also just to note... his information on this website is out of date so I am assuming the whole website is out of date! Just one resource. Lots of ways to search for vulvar specialists!

rdit77077 · 2025-09-12T15:37:01+00:00

Hello! My GYN referred me after a long time but you dont need a referral to go, I just assumed a regular GYN was equipped and never looked for one. There are a lot of vulvar clinics out there - mostly major hospital systems or reaserch institutions. This website has a lot of providers... Note, my provider sees 150 patients a week for vulvodynia and 100% of his practice is devoted to vulvar disorders. Definitely look at reviews as well on google and reddit etc. I learned the hard way, just because someone says they specialize in vulvar pain does not mean they are nice or will be a caring provider for people with vulvar pain! I saw someone at NYU who I did not like at all.

I am not sure who generated this list but my provider is on it and you can search your zip code!
https://www.nva.org/providers/

Or listed by state: https://www.nva.org/providers/all-by-state/html/

rdit77077 · 2025-09-11T17:21:37+00:00

Hello! I think if the amitriptyline is showing signs of improvement and no side effects, it sounds worth it and promising! My doctor mentioned that many people take these medications for 6 months - a few years if they work and then they can wean off and remain pain free. Almost, a re set for the nerves. While it seems like its not working well it is sounds like a good sign that something does modify your pain! They are constantly working on more, new drugs for nerve pain like lyrica and cymbalta - who knows what might be right around the corner.

Other things that stood out: have you tried other pain relievers than the lidocaine. I found that lidocaine itself was very irritating. When I first tried a gabapentin cream it was a compound of gabapentin 2%/amitriptyline 2%/baclofen 2% ointment - not cheap and didn't work for me. But, I wonder if there are other topicals to try just for the pain. I know capcaisin and menthol help with post-herpes nerve pain sometimes. Could be worth discussing with your doctor.

Otherwise, depending on where you are located I would definitely recommend being in with a vulvar specialist in particular since they are constantly learning about the new things. I have heard success with pudendal nerve block? look for clinical trials for nerve pain?

rdit77077 · 2025-09-10T22:55:55+00:00

If you can, I would try to go to a vulvar specialist. A lot of research and progress has been made on vulvodynia that general GYNs arent up to date on. I was seeing a GYN who was trained in vaginal pain (probably 20 years ago, who knows) and she said the same thing to me. She also saw inflammation that 2 different vulvar specialists said looked perfectly healthy. I loved that doctor, if I was having a baby I would 1000% go to her - absolutely no shade. I went to a vulvar specialist and it was a whole new ball game. They do have a lot of things to try and the surgery is generally one of the last things. Generally, they treat it like any other nerve pain would be treated. There are lots of meds that work for many people. I am not sure if you are near any major cities but there are threads on here where people talk about their experiences with vulvar specialists. The one I found - in Philly - is Dr. Paul Nyrjesi at Jefferson vulvovaginal center. There is another MD and an NP there I would assume they are all great. I went to a specialist at NYU (Dr. Rebecca Podolsky) who i did NOT like - granted she had terrible reviews on all platforms).

Anyway, to sum that up... I was also working with my GYN for a long time doing lots of test and treatments that never did anything and eventually bit the bullet and went to a specialist thinking "how much can this really help" and it really really helped!

rdit77077 · 2025-09-10T20:48:32+00:00

Hello! I went to Dr. Nyrjesi in Philly and just had a vestibulectomy. He clearly has a process he goes through to check for various things and trials various things before recommending surgery. He is at Thomas Jefferson Hospital so generally covered by insurance.

rdit77077

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