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LS Misery

Posted , 9 users are following.

arlee
arlee

I’ve posted before in October 2017 when I was first diagnosed with LS. My urogyno told me that my architecture was changing. I don’t have any white patches but I do have burning and occasional itching. She didn’t do a biopsy.  I used clobetasol for weeks with no relief.  I use hormonal cream 2-3 times weekly for dryness. I’m 70 years old and way past menapause. I’ve tried to get an appointment with a vulvar specialist but they’re not taking new patients. I even saw my regular dermatologist but he wasn’t any help at all

I’m considering to see a specialist in another city where my daughter lives. 

This is causing a lot of worry and stress. The more I read in the internet the worse it is. U read about cancer and precancer lesions and it’s frighr ning. I go back to see the urogyno beginning January. Feel like I’m going in circles 

0 likes, 8 replies

8 Replies

  • Guest
    Guest arlee

    Posted

    Hi Arlee,

    I am 71 years old and was diagnosed three years ago. I am using clobetasol 1x a week ( was tapered down from more frequent use) and have been for two years. My architecture has changed. I asked my vulvar specialist last week what chances of cancer from LS are and she said about 2-4%. But the couple of cases she has seen was because the person did not get any treatment and/or did not follow through on the treatment the doctor ordered. She told me as long as I continue with the clobetasol and continue to see her 1-2 times a year she does not believe there is any need to worry. Please do not go online and read anymore of those things. They show only the very worse cases. I looked online when I was first diagnosed but stopped because of the same reasons. I ask my specialist any questions I have and she has been very forthcoming and put my fears to rest. I don't us have any stinging or burning (I am blessed in that aspect) but if I do I use a little desitin and that helps. This forum has been very helpful to me and many of the ladies use a borax rinse. I have not tried that though. Hopefully you will be able to get to see a specialist. Unfortunately many docs/gyns are not that knowledgeable about this disease. Are you in the US and if so do you live in Connecticut. If you do I can give you the name of my specialist. Please let me know how you make out.

    • arlee
      arlee Guest

      Posted

      Thanks for your reply.  Did you have a biopsy?  Thanks for your offer for specialist but I live in Canada. I’m glad you don’t have burning etc. it’s awful 

      Happy Holidays!

    • Guest
      Guest arlee

      Posted

      Yes I did have a biopsy. It was done during surgery for dropped bladder. Thankfully the urogyn knew the white patches were probably LS and did biopsy. The gyn I was going to at the time kept saying it was a fungal infection (for three months he treated me for fungal) once I knew it was LS I didnt go back to the gyn who was treating or fungal. I found the specialist I am going to now. I hope you can find relief. Good luck and happy holidays to you and your family.
  • mary09950
    mary09950 arlee

    Posted

    Dear Arlee,

    Best advice I know is for treatment with the Clobetasol.  I use it every two to three days.  My doctor said if I felt the need I could use daily but not for more than two weeks.  

    Important important is to moisturizer ALL the time.  I have been using Aquaphor available in the baby aisle st Walmart.  I believe it has made a real difference.

    I cut out sugar and I think it helped.

    Keep trying and don't feel discouraged.  I think LS can be controlled.  Keep the stress out of your day also.

    Wishing you the best.  Hope you find relief soon.  We're with you.

  • Chris1230
    Chris1230 arlee

    Posted

    arlee--not to minimize your concerns but you are even lucky to have found someone at first to acknowledge that you have this!!

    I am 54 (next Saturday) and two years into menopause.  My architecture is rapidly disappearing.  It is so fast that it is scaring me.  I have seen 4 GYNs in practice.  One says I have LS, two say I don't.  One says nothing looks different, one said I have adhesions.  I tried to go back to the two doctors who helped and they have left the practice and moved out of the area.  I feel I have nowhere to go.  There are two doctors in my area that specialize in it an neither take insurance and charge a premium "boutique" price to see them.  

    Like you, I don't have the white patches but for years had itching and burning.  Menopause seems to have actually helped with that; although now I am terribly dry and fusing.  Estrogen cream gives me a constant mild itch.

    Anyway, I know I haven't been helpful but I understand your concerns.

    • arlee
      arlee Chris1230

      Posted

      Thanks Chris. Yes you’ve been helpful - I know I’m not alone in this mess. You say estrogen made you itch. Do you use it internally? My city - I live in Canada has very few vulvar derm specialists. I tried to make an appointment with one doctor  secretary said she’s not taking new patients. Very discouraging. At first I used clobetasol for weeks 2x daily as per gynos instructions. Maybe it was too much, I don’t know. Did you have a biopsy to confirm LS?
  • beth51904
    beth51904 arlee

    Posted

    I am 49. I have had LS since my early 20s. I have done everything recommended to maintain the LS. In early July 2017, i received a new diagnosis. I have vulvar cancer. Always follow your own instinct. While vulvar cancer is rare, the 2 reasons a person gets vulvar cancer .... positive to HPV or  lichen sclerosis. 
    • arlee
      arlee beth51904

      Posted

      Beth I’m so sorry to hear this and scared as well. What are your symptoms?  The fact that you did everything you could is quite discouraging for me. Are you or did you have surgery?
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