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36 years whit LS

Posted , 16 users are following.

rebecca42908
rebecca42908

Looking fore some one that has had this fore many years...

 

0 likes, 45 replies

45 Replies

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  • rebecca42908
    rebecca42908

    Posted

    Some background. Im 38 now. My mother has it, my sister has lichen planus my aunt had lichen planus lichen ruber. Sorry if i spell wrong wink I was to my gyn today and its not so god as i wanted it to be. So if anyone hawe had it fore many years i want to now  u are doing..

     

  • sheila49099
    sheila49099 rebecca42908

    Posted

    Hi Rebecca - I have had LS for over 35 years and I am now 77.  

    I do not know if my mother had it as it was never talked about and she has been gone for over 35 years.  It is now somewhat under control (not entirely)

    and the clitorus is completely gone.  The rest is so reduced. I use coconut, 

    oil to keep lubricated (morning and night) That seems to keep things from

    disappearing more (maybe that's a fools hope)

    • mary7663
      mary7663 sheila49099

      Posted

      Whoa Sheila you sound like me!  Although you are much older.... I am only 73😉 I have had LP close to 30 years , at the beginning only in my mouth so my dentist and I worked to keep it under control. Unfortunately, mostly me doing the research. About  three years ago, after a huge round of IV antibiotics, I developed it vaginally.  Nobody really wants to touch this(not literally of course) so round and round I went from Doc to Doc.  I found a PA who is part of a very specialized GYN practice who knows more about LP/LS than anybody I have encountered thus far.  She immediately put me on a topical steroid (mild) and a HRT cream for dryness.The results are encouraging......I am on my third year with her.  Unfortunately, I just had a total knee replacement and this little 😱shock to my system exacerbated my LP/LS..........it was like I didn't know which hurt to address first....if you know what I mean.  But finding her was my salvation.......I have somebody who cares and understands. I do not know anybody with this.........no family, nobody and she is encouraged that the estrogen cream (minute topical amount that will no cause cancer) will helps with the drying/scarring.  
    • karen41728
      karen41728 mary7663

      Posted

      Mary did you ever have any problems when you were younger with smear test only in some occasions they are connected
    • rockin_R
      rockin_R sheila49099

      Posted

      Hi I'm 53 was recently diagnosed with lichen sclerosus and for biopsies were taken. None of them are cancer. First of all I don't have any clue what life is closed this is this is some sort of scar tissue and I have to use the clobetasol. Are you to tell me your actual skin is disappearing is that what you're saying?
  • Thunder_Thighs
    Thunder_Thighs rebecca42908

    Posted

    Hi Rebecca, I have Lichen sclerosus and my mother has Lichen Planus. Both mine and my mothers consultant have said that it can be hereditary. Years ago women did not discuss matters of that nature but today mums and daughters do!  My aunt died of cancer of the vulva but sadly we do not know if she had the same symptoms as us (before it developed into cancer) as she never like to discuss that part of her body!!

    My mum is ok but has flare ups and I am getting mine under control but like so many others who have mentioned on this forum, you are left with scare tissue and fused parts, sex is painful etc.  It's just getting the right stuff to make your life comfortable and easier.  Sadly it is not something that will go away!

    • karen41728
      karen41728 Thunder_Thighs

      Posted

      Have either you or your mum ever had abnormal cells after a smear test in some occasions these are connected
    • kay70189
      kay70189 karen41728

      Posted

      Hi Karen I have had an abnormal smear test about 8 years ago.

      Then I had an hystorectomy. Two prolapse operations and last year diagnosed with LS.

      Hope this helps kay

    • karen41728
      karen41728 kay70189

      Posted

      Hi kay

      Do you have Lichen planus in your mouth how old are you.... I do think the abnormal cells cause this, I'm almost 58 hope your doing okay

      X

  • Morrell1951
    Morrell1951 rebecca42908

    Posted

    I've had LS since I was 22 or earlier, undiagnosed till I was 62. According to Dr. Goldstein in his presenation, there are at least four levels of severity and I believe mine is mild. My clitoris was finally buried two years ago and I believe my inner labia have been diminished for decades. Ls was always misdiagnosed as yeast infections, although I think I had both plenty of times.
  • sandra01720
    sandra01720 rebecca42908

    Posted

    I think I started with it in my teens. Anal area only for many years. Sometime in adulthood (don't remember but wonder if it was from trauma of giving birth), it started in my vulva. I'm now 45. My maternal grandmother had itching of vulva and recurrent bladder infections. I don't think she was ever diagnosed eith LS but I strongly suspect she had it. She has passed away so I have unanswered questions. I must have a lower degree of severity. I do suffer from severe itching if I delve into sugar.
  • Queenee
    Queenee rebecca42908

    Posted

    Hi Rebecca, once I was lucky enough to have. GYN forward me to a Pharmacist who had also studied for 2 years in plant HRT.  He was very good in that what he gave me WORKED.  UNFORTUNATELY, I had to finish work & could no longer pay $160 every 3 months.   Of course the LS returned, but oh it was so nice not having symptoms for a while.

     

    • kathy94347
      kathy94347 Queenee

      Posted

      Is that hormonal replacement?.. I am seeing a dr in mid may and she treats with that!!!  and will be treating with something for my hashamotis.. I will be posting when i see her.. Thanks for the reminder!!!

       

    • sandra01720
      sandra01720 kathy94347

      Posted

      Please inform us about your treatment. I need info on hashimotos and LS.
    • kathy94347
      kathy94347 sandra01720

      Posted

      I am my own health advocate.. Read alot and read that this is related to my hashimotos. I am still suffering with thyroid problems and have finally found a Dr who treats the whole body.. "a former GYN" my appt is May 17 and i am sure she will have more detail as she treats thyroid problems as well. So excited that i found her.. I am sure she has a world of knowldege.. I would think since it is related that once the THYroid problem is under control  JUST maybe i can beat this too.. Be in touch!!!

       

    • sheila49099
      sheila49099 kathy94347

      Posted

      Kathy, what I have learned is that LS is an autoimmune disease and to

      be a true autoimmune disease you have to have at least three.  

      Thyroid is also an autoimmune disease I had to have mine out, and my third one is Arthritis.  After my thyroid was removed (cancer) the itching

      came to a halt. There is just a bit at times around the anus. 

    • kathy94347
      kathy94347 sheila49099

      Posted

      Thank you.. I still dont know if i have LS   will see dr on may 17.
    • Queenee
      Queenee kathy94347

      Posted

      Yes natural hormone replacement.  I too have hypothyroidism & osteoarthritis.  It seems that all 3 are auto-immune diseases.  Also I have had Alopecia Aeriata for last 3 years.  Again I was given a steroid treatment for the patches on my scalp.  I thought mine was all due to hormones as they are responsible for hair loss - no testosterone, estrogen, no elasticity, no moisture, progesterone - can't answer that one.  But adding to this my sex life us none existent as I have no libido.  And I was looking forward to having good sex life after menopause!
    • kathy94347
      kathy94347 Queenee

      Posted

      I just got engaged at 64!! No sex life..what can be done about that HRT???

       

    • Morrell1951
      Morrell1951 kathy94347

      Posted

      If you just got engaged, you must have an active libido. Sex just requires some gentle, patient creativity.
    • Queenee
      Queenee kathy94347

      Posted

      No problem, I hope everything works out.  Just keep me n the loop 😊
    • Queenee
      Queenee kathy94347

      Posted

      You could talk to yr GYN & maybe they know of someone who uses plant based hormones.  If not then regular hormone replacement.  But don't use the latter if there is cancer in your family.  Usually the plant based estrogen doesn't cause problems because it us not absorbed in your blood stream.  You can also get estrogen gel to rub on your inner arms or thigh.
    • Limo
      Limo sheila49099

      Posted

      Sheila, I think you are confused...to have a syndrome you must have three not auto immune. I have had LS for 20 years and to my knowledge I do not have any other auto immune deseases. I do believe it is heriditary because my sister has it. My mother has passed so not sure about her. Women need to talk about it, I did not know for years that my sister also had it. Crazy. I treat with cortisteriod ointment which I try to use sparingly.
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