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16 months after diagnosis by biopsy of LS .....

Posted , 7 users are following.

lynne1945
lynne1945

.....I finally got into a dermo in vulval health in another city. I persisted in specialist involvement despite two doctors, a gyno and two biopsies telling me I had LS.  One reason I persisted was that I had no relief with  Clobetasol  in the last two months when I I was put on to it with a major flare (I had been on a lesser strength steroid prior to this but it didn't work this time) I've been basically just burning in agony, stopping and starting the Clob and using every soothing tip I got from here. And crying. A lot.  The other reason I went to the dermo was because I didn't look anything like any pictures I saw on the LS sites, no white plaques no anal involvement, no scarring, no itching. 

My new doctor took one look and told me I have Lichen Planus.

So much for biopsies, so much for gynaecologists or GPs! To say I was gutted is an understatement. 

Anyway turns out the treatment is basically the same BUT BUT BUT ....  because the surface of the skin is burned and raw with lesions from the LP the use of strong steroid creams/ ointments is going to be raw agony to stick it out for 6 weeks or so to start getting it in the system and being able to tolerate it. Evidently. cry As I can testify.

So I have to take prednisone for three months orally, tapering it down fortnightly as symptoms abate and at the same time start the  Clob again, endeavouring to end up with just the Clob.

Not looking forward to the side effects of the steroid but if a good result happens then will be worth it.

Trying to take it all in and admit I am quite in shock as I know there can be oral involvement, also other parts of the body, she also told me there is no remission for L Planus, no stopping treatment ever. Not for one single day. 

I have got such support from here and want to thank you all for your kindness and help but I suppose this isn't my forum any more, which is actually quite sad in a weird way. sad

Anyone else here got LP? I had a glance at the LP forum and there are men there *gulp* ! That might be a bit beyond me at 70. 

If anyone else is in confusion about their LS, as I have been all this time, maybe a dermatologist visit might be in order to confirm.  Love and best wishes to all

Lynne

0 likes, 17 replies

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  • Nana_g
    Nana_g lynne1945

    Posted

    Reading your post highlighted the lack of correct diagnosis and the attitude that follows from consultants , I have Lichen S for many years and am dealing with the long term effects but last year my mouth erupted and I knew instinctively it was LP ., duly visited GP who looked and said it wasn't a visit to dentist ,referred  to Dental hos ,biopsy confirmed it is and am devasted . You have to manage it best you can , I use coconut oil both in the vulva,  and in mouth as a mouthwash  .plus he steroid . I have Hashimoto Thydoritus which has affected my autoimmune system , have your thyroid checked out ! I don't often reply to posts , I hope you get the support you need . 
    • lynne1945
      lynne1945 Nana_g

      Posted

      Thanks Nana g, 

      I have my thyroid levels tested (blood test) yearly and sometimes more regularly, as I have a family history of hypothyroidism (mother and two sisters) but all show normal. Maybe this Hashimoto type is diagnosed another way? Anyway, I don't want it! 😕

      So sorry for your discomfort, the mouth type sounds bad and of course even after only a few hours of diagnosis I am imagining my mouth is sore in a couple of areas! Sometimes I wish I hadn't given up my Gin and tonics! 

      About the biopsies;  the dermo today told me that biopsies aren't conclusive, one reason being that when the doctor sent along the sample she had " ? lichen Sclerosus" on the laboratory form. The lab tested it and found lichen of some sort and just confirmed the doctors guess. She said that examination by an experienced professional is the most certain diagnosis. Although I am sure there must be some sort of more intensive testing available to narrow down the exact strain or whatever! 

      I wish you well! 

    • karen41728
      karen41728 lynne1945

      Posted

      Hi Lynne 

      have you ever had an abnormal smear test when you were younger only I did and after treatment was when my problems started with lichen planus oral and skin they are linked I do understand it's an awful disease, at least we can all speak on here, how old are you Lynne I'm 58 X

    • lynne1945
      lynne1945 karen41728

      Posted

      Yes, I did about 40 years ago, also a cone biopsy and removal of most of my cervix. Then a hysterectomy. No cancer since and tested yearly. 

      Hard to think they are linked, I was only having trouble with this just over a year ago.  Thanks for support Karen. 

    • karen41728
      karen41728 lynne1945

      Posted

      Sorry Lynne didn't see this how old are you I'm 58 and am on anti depressants don't know what I'd do without them  my eldest girl paid for me to see a psycologist I'm meeting up with a few ladies xx
  • dana67195
    dana67195 lynne1945

    Posted

    Lynne, I'm sending you a personal message. Dana.
    • karen41728
      karen41728 lynne1945

      Posted

      Hi Lynn I am on anti depressants and also have seen psychologist I know how you feel i live alone which ales it worse have you ever had an abnormal smear test, also I'm meeting up with a few ladies it's good we have each other Xx
    • Guppy007
      Guppy007 karen41728

      Posted

      Maybe we should start a new thread....a  "How are you doing today thread"  we could chat about LS of course, and touch on other issues, like the emotional roller coaster of living with LS or LP, and any other health issues that we often have to deal with as well.  It would just be a place for people to stop by, have a moan if they wanted to and share their latest concerns/worries that day..what do you think.....
  • karen41728
    karen41728 lynne1945

    Posted

    Hi Lynn

    I have LP I have the burning in my mouth if I have spicy foods and sometimes an awful taste my dentist diagnosed me did you have abnormal cells with a cervical smear when you were younger X

  • Guppy007
    Guppy007 lynne1945

    Posted

    Lynne, my understanding of Vaginal Lichen Planus is that it presents itself (sores and lesions) inside the vagina, whereas Lichen Sclerosus presents itself outside the vagina, is this what you have?  and have I got that right?

    That being said, I did have the classic Lichen Sclerosus white plaques inside the vagina when I was first diagnosed, but definitely no lesions or sores there.

    • lynne1945
      lynne1945 Guppy007

      Posted

      Guppy,

      I must admit I am more confused than ever but I have put my faith in this women, she seems like my only chance for help. I'm so depressed I am on antiDs and mental health visitors regularly which is very humiliating, I hate being so weak. I often just 'don't want to be here anymore'.

      My understanding was the same as you, but I have no lesions in my vagina (well nobody has looked but I have no pain there) they are around the vagina and extending outwards a few cms. I have normal looking skin elsewhere on vulva. Except I have lost nearly all of my labia and the tiny amount there sometimes gets painful and swollen and throbs and after a while, a couple of weeks, it has shrunk and melted a bit more.

      My urethra often burns and looks red and I assume that's the Clob burning me as I don't have it when I stop the Clob.

      I began the Prednisone this morning and expect to feel like hell fairly soon.  Happy days!

      On the plus side my strict no dairy no gluten no coffee, alcohol, sugar has helped a lot with my IBS and my reflux disease! 

      Sorry you have to cope with both types of this vicious disease! 

      I'm praying for us all.

       

    • Guppy007
      Guppy007 lynne1945

      Posted

      Lynne, at the end of the day you are in so much pain that it doesn't matter at this point what you have, the Prednisone will do its job, calm things down considerably.  I hope I did not confuse you more.

      It does sound like you have found a doctor that is motivated and focused on helping you, and that in itself counts for a lot, and is something to feel good about.

      In any case don't feel bad, weak, it is understandable, some women suffer far more with this condition than others, and I completely understand how you feel.  xxx  

  • Guppy007
    Guppy007 lynne1945

    Posted

    Lynne, I meant to say I have oral lichen planus, and it does go into remission, I am fine at the moment, have been for a while, but I dont know about vaginal oral lichen planus.  I hope this doctor has you diagnosed correctly, as prednisone is a big deal for three months.    Incidentally I have no white plaques, no anal involvement, no scarring, no itching too, that's why I was asking those questions earlier xx 
    • lynne1945
      lynne1945 Guppy007

      Posted

      That's really curious Guppy, about you not having those typical symptoms, like me. All the pictures I have seen here look almost the same, but not like me.

      When the Dermatologist showed me pictures of Lichen Planus it was like looking in a mirror! I feel I should be looking for blogs and stuff about LP but to be honest I feel I have had enough for now. My last months have been nothing but about my downstairs department around here and hubby must feel like screaming and running away ....  

      I have to to say that after only 12 hours the Prednisone is working it's evil little magic and I feel less burning than I have for 10 weeks! A very mixed blessing.  Thanks Guppy and I see you also post on the Lp forum ... I may see you there sometime.  Xx

       

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