I find myself reading discusions, replying and not able to get back to the information. It's probably an operator error. But the tips and advice have saved my sanity. And most likely my marriage. The poor guy has been so patient and understanding. Just putting your solutions and ideas out there has been so helpful.
From some of the expressions and phrases I gather the UK and Canada are highly represented. Because of the different health systems what are you seeing as the "normal" pattern for getting a knowledgeable provider in the US?
Vicky, as I have only just joined this discussion group I am just a beginner but I am finding it very helpful. I have no idea what the situation is like in the U.S. For people with LS.
I live in the UK and can see a lot of posts from the USA and Canada, but I find the advice and tips very helpful. Most of all it is astonishing how many women suffer with so many problems, which are never spoken about. I thought I was the only one! When a product is suggested from Canada for example, there is often something similar in the UK if you Google it. I also find it strange that dermatologists and gynaecologists give so many different answers, as if no one really knows enough about it. I am very grateful for finding this Forum.
Well..i am in the U.S,so far i have not gotton a for sure diagnosis of LS as 2 gynocoligists,1 dermatologist and one general practicioner all disagree..going in again next week.
I live in the UK. I've just seen a new gyni this morning and finally think (touch wood) that I might be getting somewhere. I have had 4 biopsies - all of which apparently were less than ideal; one was a cone biopsy, which was not looking in the correct place; the other three were punch biosies which hurt like hell for a while and bled, but the computer system was down and the path lab ended up looking at for the wrong thing - so I have no firm diagnosis of LS. The gyni before last said that he could diagnose by eye that this was LS and that he would monitor it every 6 months. When I'd heard nothing after 6 months re a further appointment, I rang up to be told that he had just been a locum and I would have to go on another consultants waiting list Over a year later I was referred. Reluctantly I have had to agree to another biopsy of an area which is thickening, because it might be turning nasty. I am well hacked off, but relieved that somebody 'seems' to be paying attention now and if the results are still inconclusive I will then be referred to a vulva clinic, which is what I would like to happen. There you get the expertise of both gyni abd dermatology but skills applied to some understanding of this part of the female anatomy. THis forum has been a godsend - I would not have known how to manage the condition properly without it.
See if you can get to a proper vulva clinic.
Hi Vicky, I've just discovered the green 'follow this discussion' button above the chain of conversations. That way you'll be notified if another comment is added and you can find your way back. I'm from Canada - saw a dermatologist first - hard to find one who treats LS – most of them are involved with cosmetic stuff like botox - but then she retired and I was passed on to a gynecologist at Women's College Hospital in Toronto. Don't know the set-up in the States for treating LS, but I'm hoping that info might help you figure it out. Andrea
Hi Vicky, I live in Florida. I agree, I have not been able to tell if there are more women with this desease in the States or not. I would like to hear more from. us since all products are not the same brands and it can be confusing
I have heard A&D ointment mentioned but that is the only over the counter that's familiar. Then it's off to google and finding the US equivalent.
It is helpful. I find myself with many screenshots saving information because I keep getting lost. Guess I need to have a tutoring session with my daughter.
I feel fairly sure its a guessing game for all but a small percentage of providers. I understand how alone it feels. It's a huge relief to discover i am not a deformed freak that just needs to suck it up. There is a cause and there are things to help.
Good luck. It's frustrating for sure. Let us know how it turns out.
Thanks Andrea. That's a great help. Maybe it just seems overwhelming to navigate through it - no patience - with holiday stress causing flare up. Just need to take a deep breath and slow down.
My Gyno took a biopsy at my yearly checkup and caught the LS early. Where are yocated in the US?
Good grief! I had two cervical biopsies but can't imagine four. You have a lot of patience. The healing is the worst. I felt like wearing a shirt saying just go ahead and kick while I'm down. A vulva clinic?
Where in the US do you live?
Hi Vicky2000,
yes there are such things, where an interdiciplinary team inform each other and collaborate.
I think it's telling that Dr. Goldstein, of Washington DC, USA, whose presentation we have pinned at the top of our forum, brags about having the most LS patients (1200). My gynaecologist in rural Canada has 1000. Maybe it's not on American doctors' radar.
Hi Morrell,
my GP here in the UK said that a large proportion of the women in hte waiting room to see her, were suffering from LS. She didn't put figures on it and she was the most experienced female practitioner in the surgery.