I have suffered for 33 years with this disease. I am 76 yrs old. LS is an autoimmune disease and a health person told me for a true autoimmuneO
problem is that you had to have 3. I have arthritis, Ls and thyroid. Jus over a year ago I had to have the thyroid removed (cancer) . That is okay now. But listen to this, The unbearable constant burning itch has all but disappeared. There is till some very mild discomfort around the anus. The fusing was so complete that I lost the clitorus first and than the labia minora and the labia majora was starting to disappear. But with the regular use of coconut oil and spraying after bathroom use with water and baking soda I now have rather normal looking labia and normal colour. i was white, gray, purple and bumps. Ony the clitorus has not been uncovered but sensation is still there. I am just very slightly white at the entrance to the vagina both front and back. I wish i had Known about these treatments years ago.
Hi Sheila
That is a long time has it been for all them years, what do you think caused it have you ever had any abnormal smear tests x
Hi, I have just been diagnosed with LS I am 50 I think I have had it for about 5 years I too have RA and an underactive thyroid making 3 auto immune issues. I am going for biopsies on Thursday to confirm LS. I need to check out the coconut oil thing I have lost 1 labia minora so far and I don't have much of the other left, it gives me hope that yours came back, how long did it take and was that due to coconut oil?
Do you know what caused the LS Debbie have you ever had problems with abnormal smears I have LP and think it started after my abnormal smears
Hi Debbie- yes i believe it was the coconut oil because it prevents any dryness. Also it is a very natural product and bonus it does not stain undies. My doctor told me years ago to not ever take a bath because water dries the skin so I only take showers and I don't use any special soaps only the shampoo that runs down from my hair. I wash it every day. The vagina is a self cleaning organ. I still use Betaderm cream if there is even the slightest itch around the rectum.
I was also told not to wet down there too much. I have a bidet and use it no more than twice a day on advice from my specialists. I use Advantan fatty ointment and dermeze sensitive for a moisturiser. My story is similar to yours but I have not tried anything but what I stated.
Hi Karen - No I have never had an abnormal smear. I think stress is a major factor in LS and I had lost my husband after many years if severe illness. LS came upon me so fast and furious it was like a raging bear.
I also take probiotics, Vit D , and almost never buy prepared foods. I cook. I have cut back on surgar but not completely out.
Did you ever have any concern that you would not be able to pee as the LS had intruded at the opening of the urethra?
Hi Kathleen- I never had the concern but I also didn't know that that could happen until I read it on this site. Now I do think about it but so far I am okay
This is interesting about the water because i have read many accounts of people who say the medications work much better if used after soaking in a bath. I have also read reports of women who say they get relief from spending much time in baths with baking soda in the water. I have not been taking baths, or soaking in baking soda, but because of what I have been reading I take extra time in shower, using sprayer attachment to spray much water on myself. Hmmm...now I am wondering which is best- soaking in water or stearing clear of water???
i do use coconut oil, and no soap.
Thank you Sheila will try this, it's better advice than I have been given by my doctor. Much appreciated.
Hi Karen, I don't know yet waiting for the biopsy later this week, I had a Marina coil fitted and it started to really go mad after that, I have not had an abnormal test but I am due one shortly, what is LP Karen I don't know that one.?
Hi Debbie
LP is similar to LS but affects the inside where LS is on the outside something like that anyway
Take care
Karen
I have been told not to wet it excessively. When I go to the pool I put on dermeze which is like a Vaseline to protect it. The specialists stated why at the time but I cannot remember what they said now. I only follow their advice because they are highly qualified and experienced and the clinic is just for LS and vulva issues.
Hi Kathleen
Have you ever had trouble with abnormal smear test in the past x
No, never, and I do not have to have any more ever because I am now 70 and always been clear!
Like you, I am confused, do you soak before applying the steroid cream or not? Wish I knew.
Do you see a specialist for this. Ask them. I follow the protocol from Mercy Hospital for women where I see gyna/skin specialist team.
Sheila, I concur that on top of our prescription ointment, using the baking soda rinse and moisturising with coconut oil have really helped me. My clitoris is still sealed over, but the skin over it is fine and supple, and I do have sensation. I have a narrow whitish strip across the length of my perimeum and no day-to-day no discomfort at all. My vaginal introitus is small (two fingers, not three) and hardened, so any penetration at all will cause a small tear that stings. Whether I decide to go ahead with sex again now that I've taken two whole years of treatment and celibacy to get my LS to this point, remains to be seen.
Thanks for the info I will definable look at getting coconut oil, do you buy it from a high street company? I'm hoping I won't loose my clitoris now I'm using the ointment. Did the detereation or progression which ever way you look at it stop when you started using medication?