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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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  • melissa0
    melissa0 cheneslieges132

    Posted

    Well I am 33 so I am very young to be dealing with this disease. A lot of ladies in here have wonderful advise. Don't stress out about it as it is manageable with care and effort. Browse through the forum...a lot of methods out there.
  • Jessicat
    Jessicat cheneslieges132

    Posted

    Hi I'm 20 with this condition and have had it for about a year, if you keep on with the dermovate and try some suggestion on here, you should be able to keep the LS under control. I've been using coconut oil to help with the itching as well. I feel like my LS has been improving so much over the past few months so if you persist with treatment I'm sure you will too
  • Pollyanne
    Pollyanne cheneslieges132

    Posted

    Oh dear, don't despair, it is an awful shock when we first find we have this but just tell yourself it is not life threatening and it will come into perspective a bit. I am shocked at the loss of labia but as I said to my GP I would feel a lot worse if it was my nose disappearing! At least no one else need know what's going on in the basement. I do feel I have mine under control with Dermovate when needed and lots of emu or coconut oil, it is such a strange disease and seems to affect us all a bit differently. Try not to look at the pictures they are worse case scenarios and hopefully gain comfort from fellow sufferers on this site.

    best of luck in coming to grips with it, I am in my 70s and have had 3 years to get used to it. 

  • jeri24294
    jeri24294 cheneslieges132

    Posted

    Hi Cheneslieges, please don't despair I have had LS for about 2 years and will be 74 this October.  This disease is not pleasant but certainly not the end of the world...there are many worse conditions to be sure!  In my case, it seems to have gone into remission (knock on wood!) but I keep the Clob handy in case of flareups.  I take a probiotic, try to stay away from sugar, and use cornstarch to keep the area dry.  Many use a moisturizer like coconut oil.  Lots of good advice on this site.  Bicarbonite of soda for spray after going to bathroom.  It will get better...stress and worry don't help.  Let us know how you are doing.
  • jenny99721
    jenny99721 cheneslieges132

    Posted

    Hi there - I was diagnosed at 36 and the initial year or two I was frantic. it is not a pleasant condition but it does tend to flare and up and then settle down. I have had months with no symptoms at all when I have forgotten all about it and other times it plays on my mind especially when my symptoms are bad. I am glad that you have come onto this site as there are some preety good people here with a wealth of experience and suggestions for things apart from the steroid cream. I only came on here a few weeks ago and after 23 years was able to try some other things apart from the dermovate. 

    I have never looked at any pictures of videos of the slow changes that occur as i know I would worry so prefer to stay a bit innocent re this. I remember when I was first diagnosed and i was preety upset the consultant told me that babies are sometimes born with it,so it kind of put it in perspectivve for me. I cannot see that if you look after the condition that it should not affect all those nice things you are going to do in your retirement. it has not stopped me sking, playing over 55;s netball and badminton and all sorts of thing. As I said you will get good practical and psychological support from this site. take care Jen

  • sandra01720
    sandra01720 cheneslieges132

    Posted

    I'm 45 and I believe I have had it undiagnosed (just diagnosed last June) off and on since I was a teenager. I fell apart when I was diagnosed and saw the horrific pictures. I was also crying and could hardly eat for awhile. Stop looking at the pictures and read advice on here from real people with experience. Most of us can live fairly comfortable lives with a set back here and there. Use your steroid and moisturizers such as coconut oil or olive oil. Reduce your sugar intake. (Makes a big difference for many). And try to relax. . Give yourself some time to work through it but I do believe it'll get easier. Ask any questions you have. Amazing support on here.
  • harriet12877
    harriet12877 cheneslieges132

    Posted

    I understand how you feel. Your feelings are valid. I have lived successfully with this condition for over 10 years. Now 66 years old, I've had to rethink what a quality life is and how to love my husband of 43 years in ways that please him. He demonstrates his love more now than before. Its not easy....but i work at not allowing my body to rob me of who i am. You are more that one dimensional.What we are going through makes you realize that you have been given a multifaceted life. Just like a person who losses a limp learns to compensate ,even with a spirit of excellence so must we. Tomorrow i go to the doctor to schedule surgery to reopen my vagina for the 2nd time to correct problem urination. I'm encouraging you to appreciate the life you have been given no matter what state you are in. By the way ,my husband and i are also in business together. Bless you in your journey to living above your circumstances.
    • judy04448
      judy04448 harriet12877

      Posted

      Well said. 

      "Faith is not about everything turning out OK;

      Faith is about being OK no matter how things turn out."

      You can do this. I'm 73 and have been dealing with this successfully for years. There is lots of good info on this site.  Learn what works for you. Be grateful for everything you have every day.....a business, husband, good MD, this site......I could go on.

    • harriet12877
      harriet12877 Chrisy

      Posted

      Thank you so much for caring. You all are becoming my best friends to share my heart with about this. Otherwise,we go through mostly in silence with such a private matter.
    • joanna43-
      joanna43- harriet12877

      Posted

      Thank you Harriet for your wise and kind words. I was just diagnosed 6weeks ago and feel so blessed to have found this site and all the good and wiser advice here!h
  • harriet12877
    harriet12877 cheneslieges132

    Posted

    I understand how you feel. Your feelings are valid. I have lived successfully with this condition for over 10 years. Now 66 years old, I've had to rethink what a quality life is and how to love my husband of 43 years in ways that please him. He demonstrates his love more now than before. Its not easy....but i work at not allowing my body to rob me of who i am. You are more that one dimensional.What we are going through makes you realize that you have been given a multifaceted life. Just like a person who losses a limp learns to compensate ,even with a spirit of excellence so must we. Tomorrow i go to the doctor to schedule surgery to reopen my vagina for the 2nd time to correct problem urination. I'm encouraging you to appreciate the life you have been given no matter what state you are in. By the way ,my husband and i are also in business together. Bless you in your journey to living above your circumstances.
    • cheneslieges132
      cheneslieges132 harriet12877

      Posted

      Dear harriett12877 - To be able to offer suport and comfort to me, whilst you are about to undergo surgery in such a private place really makes me appreciate that perhaps I have so little to worry about.  You sound so brave - and I know that I would not be able to cope in the way that you seem to be coping - I feel very humbled.  Good luck with the surgery - and a huge thank you.
    • sandra01720
      sandra01720 harriet12877

      Posted

      Harriet, you have a beautiful spirit and you have inspired me. I hope your surgery goes very well. Let us know how it goes.
  • Guppy007
    Guppy007 cheneslieges132

    Posted

    Hi, It sounds like you are in shock, and I understand that, especially if you have looked online at some of the pictures of women with LS, which are usually the worst case scenarios of women that have not received adequate regular care.   The most important thing you can do for your own peace of mind at this point is to start to read as much as you can on this condition.  If you go to the newbie thread and look carefully you will find a Webinar by Dr Goldstein, it lasts an hour, so have a pen and paper ready, he offers some good information for someone newly diagnosed, and it is then worth reading many of the posts from other women on this site, you will learn a lot, and you will also come to realise that, yes,  it is horrible, shocking in some respects, but it is manageable, and it feels more manageable when you feel like you understand the condition more and know how to treat it.  
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