1. Community
  2. Women's health
  3. Lichen Sclerosus

Had LS for years, just diagnosed

Posted , 9 users are following.

DK2055
DK2055

Hello!

I'm a 41 year old female and was just diagnosed with LS. The feelings I have are anger and relief. I know I've had this for as long as I can remember, but 1) I didn't realize that something was "off" and 2) no doctor ever noticed the symptons. 

The skin above my clitoris and my clitoris have fused on and off for years. I've had the white, crinkly skin as well as the itching. Fortunately, my vaginal opening seems to be unaffected. 

I'm angry because I can't believe all those doctors never noticed and the ONLY reason why they diagnosed it now is because I told them that I think I have this. 

Anyway, it has been confirmed and they started me on the Clob. I've been reading through the posts here and I'm looking for clarification on a few things:

1) My doc advised me to apply the Clob 2x a day and come back in 4 weeks to see how it is going. I've read different things about 1x a day vs 2x a day. I really don't want to make things worse, so should I stick with 2x or switch to 1x a day?

2) I've read different things about reversing the fusion/adhesion. Does the Clob do this? Will I always be fused or is there a way to un-fuse my clitorial hood and the surrounding skin?

3) I've read different things about coconut oil and baking soda. What is the purpose of these two items? How is it used? How often it is used? 

I know that there seems to be a connection with autoimmune diseases and LS, so I figured I would mention that I do have Hashimoto's (thyroid disease). I'm sure I had the LS first because like I said I remember my vagina being like this on and off forever. The Hashimoto's is a relatively recent thing. Dianosed withing in 2009-10. It has been under control since then. 

I've never really had issues with sex and I had a baby 3 years ago without knowing about the LS. 

Due to other circumstances in my life, I haven't had sex in almost 4 years, but now that I know this and am actively trying to have sex (not successful yet!) will using the Clob be a problem? 

Anyway, I'm so glad that this forum exists because the information out there is confusing and lacking. 

Thanks for reading and hope you have a great day. 

1 like, 18 replies

18 Replies

Prev
  • melissa0
    melissa0 DK2055

    Posted

    I am the one who was also prescribed Clob twice a day. I was diagnosed in December and the gyn is who prescribed it that frequently. I also was able to squeeze in with a dermatologist who did a biopsy to confirm it and said 2 times a day was entirely way too frequent. Gyn said Clob would stop fusing and dermatologist said it would not. Goes to show no doctor really knows.

    I basically left there feeling even more confused and lost!!!!! This site has helped me tremendously. I still have days where is am scared of what the future holds with me and LS and other days where I am accepting of it.

    Right now I have slowly decreased my use of Clob myself as I have no active symptoms of LS. I am down to once every other day. Between I use coconut oil and I do also soak in a bath with baking soda (especially after the days I run).

    I have cut all sugar and gluten. I have added plain Kefir once a day and eat tons of veggies!!!

    I see the gyn on Monday so curious what he says this time.

    Good luck and slowly digest it all. I was so angry, sad, frustrated and confused at first.

    • hanny32508
      hanny32508 melissa0

      Posted

      I'm curious too Melissa.  Will you ever surprize your gyn. (ha)

      Keep up the good things for controlling LS.

    • DK2055
      DK2055 melissa0

      Posted

      Interesting. The doc that perscribed the Clob is a GYNO and not a DERM, so there is that. 

      I guess I will just keep a close eye on the area to see if there are any side effects.

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.