Not Sure Where to Go Medically Speaking

I'm relatively new to this forum but have read through just about everything because it is so informative. (Thank you, everyone.) I feel for you, Chris. In my own experience, and from what I've read in this forum, many doctors are unfamiliar with LS and either don't diagnose it or misdiagnose it. It seems to take years of misdiagnoses and wrong treatment advice, or by chance happening upon the right specialist who does know about LS, to finally get the right diagnosis. If you have a constant suspicion that you have it and you continue to experience symptoms, I feel strongly that you need to be your own advocate and push on with the search for a proper diagnosis. Push on trying to find a doctor who knows, categorically, what it is that you've got going on down there. I get the sense that the earlier LS is diagnosed, the better chance you have of bringing it under control and avoiding some of the worst symptoms. Just my two cents. Push on!!  

I agree that you have to be your own best advocate. The first gyn I went to treated for fungal infection and finally after much insistence he did biopsy and found it was LS. He told me to use clobetasol 2x a day for two weeks and then only when needed. He also to,d me it was not a potent steroid which I know is not true. It is very potent! Then he said he didn't need to follow up with me anymore which was good because I sure wasn't going back to him. Went home and looked on internet for vulvar specialists and found the gyn I now have been going to for three years. LS has been kept under control although I do have some fusing on right labia and I see her every 6 months to keep check on things. So am not sure if you looked up vulvar specialists or just gyns but I know it helped me find one who is very knowledgeable about LS. Good luck and keep looking, you will find the right one. It just takes time because most docs and even gyns know very little about LS.

Hi Chris, I agree with what  Metta says, you need to be the best advocate for yourself that you can be.

Getting a confirmed diagnosis is crucial to getting the right support and treatment. Menapause can cause atrophy all on its own, so it is not necessarily due to LS.   What were the visual signs that made your Dr think a biopsy for LS was needed? Regarding the biopsy, Dr Goldstein says  the biopsy needs to be taken from the correct area. Have you watched him talk online? When the other Dr treated you with the Clobetasol, what made him think that was necessary?

Maybe you could get a copy of your notes which would have a record of the different Drs opinions (you can in the UK). With the evidence, to give you confidence, perhaps you could get another appointment, with the person you have most faith in, not just who happens to be there.  Do you have a good friend who could go to the DRs with you, to support you ? Can you afford an initial consult with Dr Goldstein, just to get a diagnosis?

The other thing is, one lady on here said she took photos regularly to monitor progress. Could you manage that, possibly with measurements? so that if there any visual changes you have a record, that cannot be denied.

I am post-menapausal and had itching for years, pre-diagnosis but no discharge. It was the practice Nurse who I saw about the itching. She was the one who first said she thought it was LS and told me to see the GP. My GP didn't suggest a biopsy but was sure that I did have fusing and LS. The GP has referred me to the Gynae team now but I have no idea what they will do, possibly not a lot as I am no longer childbearing age. The itching is gone, after treatment with betamethasone valerate. It seems that once the vaginal opening gets smaller there is not a lot that can be done, baring surgery. One person suggested getting a 'dildo' to help keep the opening functional. There is a lady on here posting who has lots of great ideas that have worked for her.

I can't think of anything that might help with your concerns about toxicity I'm afraid.

Best wishes :-)

That hardened white area is what I thought LS looked like

Go see Lucy Treene in Doctor Simon’s Office on M Street in downtown DC. The office doesn’t accept insurance, but it’s worth it. The initial appointment was around $250. Before your appointment, you fill out a very detailed questionnaire that makes you realize how little your other doctors know. I sat down with her in her office before the exam and then after. All follow up appointments are around $90, but I always talk to her for about 30 minutes after my appt. I have LS and Vestibulodynia and am just shy of 30 years old. My husband and I want to start a family and she has helped me get my symptoms under control. After two weeks I’m symptom free. Her nurse even called me a week after my last appointment to check up on me.