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

Nothing works lately. Any ideas?

Posted , 13 users are following.

lisa7788
lisa7788

Hi all,

I would be grateful to anyone that might have any ideas for me!  I have a severe case of lichen sclerosus.  I have fusing of the labia minor with the clitoris hood, and the fusing is progressing.  I have intense, unbearable itch, especially in the middle of the night which makes me tired and sore when I wake up in the morning.  It is making my life pretty unpleasant.  My gynecologist told me I was too severe and agreed with my previous gynecologist that I need to go to UCLA for more specialized help. The itch and fusing are progressing.  The typical clobetasol and estrace are not working.  I have filed an appeal with my insurance company to see a lichen sclerosus specialist at UCLA who does compounding till the right steroids work.  My gynecologists also suggested CO2 lazer and light therapy at UCLA.  Thanks for listening.  By the way, the clobetasol used to work for me a few years back when I was first diagnosed but then stopped working for me.  Perhaps it was due to my going through menopause?   

Lisa

 

0 likes, 36 replies

36 Replies

Prev
  • Nancy_K_B
    Nancy_K_B lisa7788

    Posted

    HI there Lisa. I know it's frustrating when things work and we think well, that's good... adn then another week or moth and all of a sudden the same emollients don't work. Luckily after 8 months of realizing I have this, I'm pretty stable with the itch department very low to no. But I learned from the experts here like Guppy and Hanny that we have to really get aware of very subtle changes - fast. Just the day before yesterday, I realized I had the tiniest anus itch ( my original site, I think).. and I started to make my new favorite breakfast of oatmeal with fruit and almond milk and a bit of maple syrup. That's worked for months now. WELL! eek I realized I better dowse what my body is willing to take in... so, no fruit for sometime argh. the oatmeal and maple syrup is still just fine. 

    Well, But what I wanted to share that started me off at the beginning is that I had found a woman on here form 4 eyars ago who aid she got well from taking Vitamin D3. Another person got well she dais from taking MSM. Those two really got me researching the nutritional aspects of autoimmune diseases.  I've taken a whole slew of them for months now.. and this last month I stopped them all for a break.   I don't remember if you mentioned if you have started a nutritional protocol? but that is my suggestion.  you might like to lok up my two articles on the ones I've foudn the scinece for.. click on my name.  Blessings and be well.   

    • lisa7788
      lisa7788 Nancy_K_B

      Posted

      Hi Nancy,

      I am eating healthier but am not driven by diet. I appreciate a holistic approach when it comes to LS. Thank you so much for your concern! I am glad you have found success, and I will check out the articles you mention. 😊

      Lisa

  • gae042846
    gae042846 lisa7788

    Posted

    Dr Andrew Goldstein is the world's leading Doctor on Lichen Sclerosus.  He has a video for doctors and patients.  It's a little over an hour but well worth watching.  He gives the proper way to use Clobetasol and if you are not applying it correctly, it doesn't work.  I've had LS for 30 years and only recently discovered this video.  He does have 2 offices in the US, one in Washington, DC and the other in New York.  If you have pain on urinating, you can use Aquaphor cream to create a barrier so your urine doesn't burn.  I hopes this helps you, it really helped me.  I am also completely fused.  Also, recently, I had a cyst on my right ovary that was suspicious and am both my ovaries, fallopian tubes and cyst removed.  Unfortunately, the doctor used an antiseptic in the genital area called Hexachloride and it burned my entire vagina.  I thought all my skin was peeled off.  It has a warning not to use in the genital area but doctors disregard this information and use it anyway.  They should have used baby shampoo diluted with 50% sterile water.  

    Lichen Sclerosus: The Unspoken Pain by Dr. Andrew Goldstein or you can put in the search bar:  https://vimeo.com/102192552

    I hope this helps you.  

    Gae

    • lisa7788
      lisa7788 gae042846

      Posted

      Thanks so much, Gae.  I'm sorry for what you've had to go through.  Thank you for the tip.  I should go back and watch Dr. Goldstein's video and follow his advice.  I'm just lazy with his regime, but I know I'm too severe now to be lazy.  I should try the Aquaphor cream you suggest.  I am currently using vaseline.  I am so sensitive.  Doctors aren't always too bright, are they?  Thanks again, and good luck to you!  Lisa

    • lori64430
      lori64430 gae042846

      Posted

      Hi Gae

       I was wondering if you could tell me how you use your Aquaphor?   What kind do you use and how often and where exactly do you put it ?  I have been using coconut oil but I’m wondering if Aquaphor is better 

      Thank you!

      Lori 

      Thank 

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.