Worried about LS lasting forever
Posted , 12 users are following.
Just joined the group which seems to be a fantastic and supportive forum. I was diagnosed in 2015 and decided not to use steroids; started using Emuaid and it was almost like magic, couldn't believe the relief from itching etc. I do a lot of walking/cycling and todate this horrible condition has not affected my life style. But over the last few months the LS seems to have flared up mainly around the anus but also the genitals and red patches at the top inside thigh - but not as bad. Going to see GP next week and in the meantime still using Emuaid but not as effective - wonder whether the magic has worn off and this is getting really serious now. I'm so confused with all the different remedies and don't know what to do now - trying to be positive but feeling very down. Am 64 and otherwise in excellent health, fit and active. I never thought I'd be entering my old age with such a horrible condition. Not in a relationship at the moment and now feel I never will be and have a lonely time ahead. A big thank you to all who read my post as the thought of others knowing what am going through feels warm.
3 likes, 19 replies
Guest Rainbow10
Posted
Hi Rainbow,
i was 68 years old when diagnosed with LS. Took awhile for diagnosis as my gyn at that time was treating for yeast infection. I am blessed that I didn't have the itching,burning or pain. Maybe if I did the diagnosis would have been sooner in coming. I had surgery for cyctocele repair and they saw some white patches and did biopsy. As soon as LS was diagnosed I found a vulvar specialist and have been going to her for over three years now. She had me start with clobetasol (steroid cream) twice a day for two weeks, then twice a week for about nine months and now have been on maintenance dose of one time a week for about two years. I will be on this for the rest of my life. I have had no further issues except Labia minor on right has shrunk. We seem to have it under control and it remains stable with no symptoms. Everyone is different and this effects everyone a little differently. The key is to find a doctor who knows about this disease and knows how to treat it(vulvar specialist if possible) and follow their directions. Most docs are not knowledgeable about this disease and how to treat it. That is why I left my first gyn and found the specialist I now go to.This forum is great as some of the ladies have tried different remedies to help with the symptoms and are more then willing to share those with you. As far as a relationship goes there is no reason why you can't be in one. Steroids are the "gold" standard to treat this disease. Good luck and let us know how you are doing. We are all in this together.🦋
Rainbow10 Guest
Posted
Wow thanks for all your kind thoughts. I have a little difficulty with steroids because of all the bad press but I might have to go down that road. My gp originally treated me for piles because of where the irritation was. Knowing my body, diet etc I knew it wasn’t that. Went back to see my usual woman GP she referred me to gyn clinic and got a LS diagnosis after biopsy. I think I may have become a little complacent because my alternative remedies worked and haven’t been back to clinic since 2015 - hopefully nothing to sinister is lurking and I’ll find once I go back - soon. At the moment I only have itiching (not all the time so I can manage) and fortunately no pain. I always think if stays like this I can manage but who knows. I’ll keep all posted re my progress. Great forum - I don’t feel like lonely aging woman with an embarrassing condition,