Not Sure Where to Go Medically Speaking

Women's health
1

Hi everyone.  I haven't posted in a while but I do lurk and read.

About 2-3 years ago, prior to entering menopause, I was having severe burning/itching/redness in the vestibule/perineum area.  Now, this was not new and had been going on for years.  Always treated for yeast.  I had one GYN tell me he thought I had LS but didn't like to biopsy because he felt it wasn't necessary.  He treated me with clobetasol which sort of kept me feeling okay.  I then got into some flare and tried to get an appointment with him but he was out so I got one of the other partners.  She biopsied me (which is a whole different story) and it came back negative.  I've been doing somewhat okay using milder ointments and such.  In fact, as I entered menopause, things seemed to feel better.  Partly I think because my own natural moisture decreased and I wasn't sitting in a puddle of it all day.  

But then, earlier this year I found some lump in the clitoral area and a took a good look at things I saw some fusing in the clitorial area and just above the urethra.  Freaked out over the lump and got in with yet ANOTHER partner.  He didn't know what the lump was (and fortunately it resolved so it was some sort of cyst under the skin).  But he was a little alarmed at the fusing.  Told me to use Premarin for 3-4 works everyday and really "work" the area and to return for a check.  He thought this would unfuse it.  When it was time to go back, it coincided with my annual exam which was scheduled with my regular doctor--the one who initially said I had LS.  I went through everything with him, he took a look, and said "I don't see anything unusual, looks fine to me."  And that was that.

I have continued to use the Premarin but I noticed last night that I think the fusing looks worse.  I am in my second full year of post meno and drier than ever.  The thing is, things "feel" okay down there so I don't know it's going on.  I do get the occasional itch.  In fact, I've been jogging/running and I think that might be setting things off a bit.  

Anyway, I'm starting to feel like crying now.  I live in the Virginia/DC area and I don't know where to turn.  My GYN practice obviously cannot handle this (all they care about is BABIES).  I have scoured the internet and I can't find anyone that advertises this except for Dr. Goldstein in DC and another in Virginia.  Both of which do not take insurance and have a pretty high fee for first visit. 

The other thing, and I've never seen it mentioned:  whenever I use clobetasol for any length of time, I get  strange metallic taste in my mouth and my food tastes like metal too.  This scares me because it tells me this stuff is definitely hitting me systemically.  Not good.  Not sure it's going to help the fusion at this point anyway.

I need to "get on" trying the Borax solution.  Tried it a few months ago (and posted) but I think I had the solution all wrong as it would not mix with the water.  Just sank to the bottom.  Creams, solutions, treatments, make me a little nervous because I have very sensitive skin EVERYWHERE.  I have to be extremely careful with all sorts of things I put on face (moisturizers, makeup) as I will get a rash with about 80% of products.  

Anyway, not sure what I'm looking for, but maybe if anyone is from this area they have some recommendations for physicians.  I just don't know what to do and I'm afraid that in another year, I might be totally sealed up.

2

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!!  

3

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.

4

Yes, I've been searching on vulvar specialists and the same to doctors keep coming up for the area I live in.  Both seeming to be quite the "boutique" physicians and neither taking insurance.  I suppose as a last resort I'll pick one, but I cannot believe in a major metropolitan area I cannot find a vulvar specialist.  So I'll keep looking.  The practice I got to has about 8 doctors in it and I've not had much luck there so not sure where else to go.  They are fine doctors for normal issues, but don't seem to want to spend any time figuring this out.  

5

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 :-)

6

Thanks for you thoughts.  

So, the visual signs many years ago was various colors in the area.  Shades of red, pink, brown, and paler areas coupled with lots of itching and burning.  That was what made the first doctor say LS.  The second doctor saw the same things but doesn't believe in treating unless there is a positive biopsy.  She took the biopsy from the area that seemed to have the most irritation.  It came back negative.  Besides that, things "down there" were normal structurally.  Once I hit menopause, that is where the fusing and disappearing vulva have come into things.  But maybe that *is* just menopause?  I no longer have all the variations in color like I used to.  Mostly, any type of features that I had in the area are flattening out and it's just really smooth.  The opening to the vagina doesn't seem compromised yet, at least that I can tell.  It's really the clitoral fusion and disappearance of inner labia, which were never prominent to begin with.

As for the doctors in the practice, I have been to everyone of them at one point or another.  There isn't one that I think is going to be the shining light amongst them all, although if I were just having a baby or something, several of them are great.  

Dr. Goldstein's initial consult is about $1500.  Lord only knows what the remaining costs would be if I were to continue or have some sort of procedure with him.  There is another doctor about 30 minutes from me that runs a menopause clinic and specializes in these disorders.  Again, you must pay out of pocket.  I suppose I can at least call to see what the fee is.  The weird part is when you go to the website, it sort of seems kind of gimicky.  

Interestingly, my 73 y/o mother was told that she has it (no biopsy).  I don't think anything is fusing or disappearing on her, she just has this hardened white areas.  She uses the clobetasol and they get a little better.  She's never had any pain or irritation though.

7

That hardened white area is what I thought LS looked like

8

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. 

9

Goldstein’s initial appointment is around $1500...so I’d go to Lucy first. 

10

Thank you...those prices seem VERY reasonable!