What do you think??

I've never even got to see a specialist, just my GP. Same response, if the create don't work come back and see me. Luckily, the creams seem to be working. She has given me 3 different ones of strength..Clobestol the strongest, then Betnovate and Eumovate.

Hi Tracey 03538, I'm in Scotland.

I had more or less same treatment as you.

When I went back to my nurse practitioner (she diagnosed me) I asked if there would be further appts at hospital. She said not unless there were any changes and that I would have to be referred by my GP. I suppose it's because of the pressure our health service is under.

Just take care of yourself and examine yourself regularly so you spot any changes (if any) hope you keep well.

I think it is absolutely appalling the way lots of us have been and/or continue to be treated. 1st appt and not so much as an information sheet to go home with for a disease we had never heard . Lots of us went home, googled it and scared ourselves to death with the horrific photos of vulvas with advanced stages of the condition and the mere mention of cancer made us think we were a ticking time bomb ! THANK GOD WE FOUND THIS FORUM.

You MUST INSIST on being examined at least once a year and if you gynea doesn't want to do ask your Dr to refer you to a vulva clinic or specialist. You MUST be checked for changes in the skin. Cancer is very rare but we need to be aware. Self examination with a mirror weekly is important but there may be something we can't see so its vital we have at least annual examinations. Don't let them fob you off. Good luck x

Tracey - similar experience for me. I had to jog my GP for referral to gynae when she said it could be LS. He diagnosed on examination because of fusing. I am being managed by my GP with 6 monthly check ups however, which I think is imperative. She notes what my vulva looked like each time to make sure no changes. However I am about to go back and ask for referral again as my LS has stepped up a stage with everything shrinking and little sensation down there. I think we have to insist on being seen. Good luck. 

About 4 years ago, I was diagnosed by biopsy by GP then referred to gynacologist.  Then,  appointments every 6 months for 2 years, then once a year.  However, a year ago was told to have 6 monthly appointments due to changes in the area. I am 74.

Hi Ladies,

I'm in the US and cannot believe all the referrals and such that you have to have to see physicians there. Here it is a way of living that you see your gynecologist every year or as often as you want. My physician did the biopsy first time I saw her (I recently moved to another state) she said come back in six months and after that yearly, however she also said if I see anything strange in the meantime come back. She is if the mindset of using the clob and that's about it but she will see me anytime. Gosh I'm so sorry you all have to wait and live in fear. We are lucky to have this forum... there are also great support groups on Fasebook if interested. I'm part of the healing through borax and healing through nutrition groups. I wish you all the best of luck.

Xoxo

Marnie

To be fair, my gp has suggested as long as the creams are controlling the LS, I should go see her every 3-6 months for a check up. I am 60 yrs old, not married or sexually active so haven't got anyone to 'check it for me' as they say lol...only the dog haha xx

Hello Tracey.  This is my first time writing on a forum for LS.  I just want you to know that you are not the only one.  I was diagnosed back in 2008.  Everything was fine with the clobetasol until after menopause. Now things are not so good. Doctors don't know much how to help LS.  I feel better after seeing I'm not alone here on this forum.  Everyone here understands the pain.  I don't think anyone but us understands the seriousness of it all.  Hang in there.  I will as well.  Lisa