Hi as mentioned in previous posts I was diagnosed with LS around 3 months ago, I keep thinking back to when I was diagnosed! The gynaecologist looked at my vulva very briefly and said looks like LS , she never offered me tests for thyroid or anything else? Then she prescribed me steroid cream and said come back in 3 months ( my appointment is 20th Sept) and said if the streroid cream is working well I can sign you off and won't need to see you again. I asked a few questions but felt very rushed! Like it was all no big deal! Ive been following alot of you all on here and it seems alot of you were offered other tests? And see your gynaecologist regularly? Is this normal practice? I live in the UK and I'm 35 years old, just want to know what you guys think x
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
That's good to hear Frances! ☺
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
😁 I use a hand mirror and make sure there is good light. I check every week as a rule. Xx
Forgot to say I also suffer arthritis etc and find it difficult to get in the right position to see anything. My gp is aware of my situation and is happy for me to see her any time I feel I need to. Thank you for your reply 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
Good for you Lisa! This forum was a godsend to me, I thought my number was up and i had an awful disease....it's not very nice true, but it's something I can work with - have to work with!
The upbeat attitude here gave me hope again. At the moment I am clear, only have what looks like a whitehead and I'm working on it. The support here is wonderful!
Thanks, cleo15! I will try to develop an upbeat attitude. I am thankful to have found this forum. I have felt so alone lately. 
Lisa
P.S. I am hoping this forum can give good ideas on how to treat LS!
Bless you Lisa, I felt very isolated and frightened till I found this forum too. As it is an autoimmune disease I'd firstly look at your diet and if you can, start on an anti inflammatory diet. (plenty of info on web and You Tube) It's best to lower sugar asap. Loads of us have noticed improvement, less flare ups etc when lowering sugar intake.
Thanks so much, Caroline! I will try to stop as much sugar as you say. I will google anti inflammatory diet as you suggest. Lisa
Hi Tracey , also similar go away with betnovate and vaseline and get on with it 😩
Thank heavans for this site and lovely ladies 🙏❤️
Lots of us have tried natural remedies too. The clobetasol cream was no good to me and I saw some of our girls had used aloe Vera gel with turmeric and it helped a lot. I mixed castor oil, lavender oil and frankencence and I am now pink
again! Its still a little itchy but nothing I can't cope with. If you look back over old discussions you will find recipes for natural remedies then you just have to find what works for you! Good luck!
Thanks, Cleo! I am going to buy some Aloe today. I'm very sensitive to most everything, but I am okay with Aloe.
Lisa
hi marine may i ask how do you do the borax? and have you undone any fusing with the borax ...janie