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Devastated to be diagnosed with LS at 77 years old

Posted , 18 users are following.

cheneslieges132
cheneslieges132

Hello - I have just been diagnosed with Lichen Sclerosus, aged 77 years.  I am a very active and fairly fit old woman, (still working full-time, I have an Accountancy Practice with my husband)   and the little bit of reading I have done about LS fills me with horror.  I am particularly horrifed to discover that my Clitoris has rapidly disappeared (in a matter of weeks) and cannot now be seen.  Until a couple of months ago I had no problem at all and the Clitoris was normal.  I just had this interminable itching since September 2015 and occasionally felt a bit sore.  Thought it was simply Oestrogen deficiency.  So did my GP also, but he finally referred me to a Gynaecologist at the hospital.  Now on Dermovate long-term, for a minimum of 4 months and thereafter occasional use twice a month for the rest of my life (the Gynae.  tells me!).  I am terrified now, having read a bit, that my labia minora and other "bits and pieces" will also disappear or "fuse".  I have viewed horrible photographs by "googling" this condition -  I am in a terrible state - I had just begun to think that life was pretty good, and now I have been diagnosed, I am VERY depressed and crying a lot.  I have had suicidal thoughts quite often - I do not want to live like this.  We were thinking of Retiring (finally!) but now I just cannot look forward to a future like this.

2 likes, 22 replies

22 Replies

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  • cheneslieges132
    cheneslieges132

    Posted

    I am  feeling incredibly supported by the many, many wonderful prople who have responded to my utter dismay, and I can only say a big THANK YOU to all who have responded, and sent their sympathetic help to me.  I hope that in time I can get out of this "trough of despond" which surrounds me - and with all your kind support, then hopefully I can get through this.  I will try to think more positive thoughts - although it is so new, and so very, very hard to be positive at all at the moment.  But I thank you all from the bottom of my heart.
  • jeri24294
    jeri24294 cheneslieges132

    Posted

    To cheneslieges, I have been thinking of your inquiry, and I would like to add that I hope you retire soon....77 is pretty late to start having fun.  I hope you have other interests that will keep you engaged in life and your mind off LS. Be happy and thankful for the good things you have.  When I think of the horrible illnesses that so many are faced with I am thankful that LS is the only bump in the road that I have to deal with.  Wishing you well and all the best.
    • cheneslieges132
      cheneslieges132 jeri24294

      Posted

      Dear jeri24294 - Thank you for your response.  So many friendly people have responded to my bleak cry for help, and I am very moved.  I think we might finally "retire" in 2017, and for me it can't come soon enough - but my husband has no real interests or hobbies, and he will die of boredom!  Whereas I have Watercolour painting, photography, gardening, poetry-writing, singing and music (I play piano and organ and have a wonderful Yamaha Clavinova intrument) amongst lots of other interests.  I dread to think how he will fill his days ... I just wish that this had never happened,although I do know that things could be a whole lot worse.  As it is, I have other health problems, so this just adds to my unhappiness. I think I will see if I can have some anti-depressants from the GP to help me over this.  Thank you so much for caring enough to write to me - I truly appreciate this, and my thanks to all the kind people who have responded to my plea.
  • jeri24294
    jeri24294 cheneslieges132

    Posted

    Dear Cheneslieges, one more response...please know that you will be okay.  Your interests sound lovely, many that I also pursue.  My big passion is duplicate Bridge which my husband shares an interest in too.  He retired after 50 years of barbering and has health issues of mobility but he has become an avid reader, loves Bridge and  is restoring his 1932 Ford Coupe.  He has had prostate cancer so sex is no longer an issue for us, which does help with the LS.  But we have a happy life and I hope for you the same.  Please don't be unhappy....we are all here for you.
    • cheneslieges132
      cheneslieges132 jeri24294

      Posted

      Thank you so much jeri24294 - what wonderful people are here on this forum.  I am so glad that I discovered this site.  Thank you to every one of you kind people. I do feel somewhat reassured, although it is taking its toll on me.
  • helen99763
    helen99763 cheneslieges132

    Posted

    I am so sorry to hear that you are so discouraged.  I was not properly diagnosed for a full year.  I cried too and was so shocked and scared to learn about LS.  It was not until I developed the tell tale figure 8 white pattern that my GP paid serious attention. please read Hannys posts as she outlines what works best for many of us, me too.  Ie, Clobetasol twice a week and coconut oil to lubricate, baking soda spray after whenever using the toilet  Read her post to Joanna a few days back.  Here is what I just wrote to her.

    Hanny, you have outlined the routine very well.  I have followed this routine ever since diagnosis - that is, after daily use of clobetasol for two weeks took the extreme itching , soreness and white 'figure 8' area back to almost normal feeling and appearance.  I do exactly as you suggests works for you and it works for me too.  If I experience flare-ups, I apply the clobetasol 3 or 4 times per week until it is under control. I agree with your theory that sugar makes it worse and have reduced sugar to almost nil.

    I see my gynecologist once a year and also attend her vulvar clinic and she does a colposcopy once a year.  So far she is pleased at how I am doing.

    i am 78 and have had LS for 3 years

    Joanna and Cheneslieges, wishing you comfort and hope

     

    • joanna43-
      joanna43- helen99763

      Posted

      Hi Helen, as you can see I an trying to read everything I can find and I do thank you for your wise words! I have a question, what is the purpose of bathing? I am doing it but I am not a bath purpose at all. Also, is it usual to experience itching while using the Clobetasol? I am using once daily now and have been for 2weeks.
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