1. Community
  2. Women's health
  3. Lichen Sclerosus

Written off!

Posted , 17 users are following.

kathryn07219
kathryn07219

Well, here's a first.  Went to my usual gynae check up at which I was asked how things were.  Said I had flare ups from time to time but was using clob as directed, that I was part of this online forum and that I appreciated that there were lots of women worse of than me.  The gynae said that he was going to discharge me from the clinic as they hadn't really anything more to offer me and that if I was worried about anything I could go back again.  So, there we are.  Nothing more to offer me.  Straight to the point.  Is my condition improving?  No, I'm just living with it.  It itches from time to time.  I have adhesions from time to time.  My clitoris is fusing over.  My bladder problems are still there - which may be related. Is the medical profession doing any real research into this condition or is it not of enough interest?!

 

1 like, 63 replies

63 Replies

Next
  • judy10572
    judy10572 kathryn07219

    Posted

    They signed me off at the hospital too, I now just visit my GP every 6 months for a check up, here's hoping our condition stays at a stable level.
  • bennetta
    bennetta kathryn07219

    Posted

    Unfortunately while it seems this is becoming more common it still isn't common enough for anyone to do much research. I think there was someone that's done quite a bit but I can't remember his name. My doctors have only helped me manage and had no other solutions for me either.
  • lesile
    lesile kathryn07219

    Posted

    I am in same position as you . I was discharged from gynaecologist after a biopsy confirmed LS. Told to just carry on with medication and to get my GP to do yearly check for changes etc. Went to my GP yesterday to be told that I do not need yearly checkouts and just to monitor myself.

    Not much help and feel a bit let down. Like you wonder if there is not much interest or lack of knowledge. I don't think they realise the devastating effect it can have. I have had it for 18 years diagnosed at 42. Out of curiosity which country are you. I am in GB.

    • kathryn07219
      kathryn07219 lesile

      Posted

      GB too.  My gynae clinic has been very supportive up until now.  The doctor even suggested that the dermatologist I am seeing re. LP in my finger and toenails might have some ideas!! 
  • Cuppa_T
    Cuppa_T kathryn07219

    Posted

    Same here Kathryn. Gynea was extremely abrupt and told me not to come back to him as it had nothing to do with him. According to him it is a dermatological problem and if the Derm wants to know something, she can phone him. I should not come to him and yet he charged me a hefty fee that day (probably to dissuade me from coming back again). Derm again states that she can only " go as far as the door, but cannot go in". So there we go..... catch 22 situation! I have not been back to either one of them since July and try to manage as best I can with the help of this forum. Far more beneficial, in my humble opinion! Keep up the good spirit ladies and don't let some of these practitioners get you down! Evenutally we will find something that works for us. Take care and all the best. xx
    • Morrell1951
      Morrell1951 Cuppa_T

      Posted

      That takes the cake! But really, once we're ticking along they just want to make sure we don't have any bad cells. With these appointments once or twice a year, it's unlikely we'll happen to be mid-flareup. I gave up on my dermatologist for psoriasis many years ago. I'd phone for an appointment when I was a mess. The appointment would be six months later. I'd be cleared up and the doctor would spend my fifteen minutes making chitchat. Write a new steroid prescription. See ya.
  • deb09833
    deb09833 kathryn07219

    Posted

    I'm just appalled. Of course you need ongoing support and monitoring. Keep trying to find someone who will give you this. If your gyno or GP can't suggest anyone try and see if there is a vulva specialist near you. Or maybe someone on here might have a suggestion for where you live. Good luck
  • judy10572
    judy10572 kathryn07219

    Posted

    I am in GB also , I agree not much info out there to explain what causes this condition, I have never suffered from any inflammatory skin conditions before in my life, (so why have I got it now) . Doctors dont know and can't explain why, my GP says it is a common complaint in older ladies so why have I never heard of it before? Maybe it's just never talked about because of the embarrassing nature of it .
    • lynne1945
      lynne1945 judy10572

      Posted

      Well, this discussion is right on the button with me today, as I spoke to a doctor and a gynaecologist while trying to deal with a severe allergic reaction to Clobetasol. The doctor, who didn't/couldn't help me and who frankly looked uncomfortable at the mention of LS and gave me antihistamines, answered my question re how many patients went through the clinic with LS with the answer probably many more than they ever know about. In other words I guess the patients present with something else and never tell about the embarrassing 'other thing'.

      The GYN I spoke to by phone after she got my message re the reaction I was having and said oh dear! with no suggestions but told me not to bother taking the antihistamine as it only helps with itch (and I don't get itch). I told her I was going to see a vulval specialist dermatologist in another city as I had realized things weren't getting better and in fact were worse. She was delighted! She said oh yes, that's by far the best thing to do! Probably breathing a huge sigh of relief before she went back to her colposcopies (sp) and bladder prolapses.  It's a days trip for Him and me sitting on my doughnut cushion, but am sure(hope) it will be worth the trip. 

      So yes, I got written off today too! 

      sorry this should have been reply to Kathryn but won't attempt to copy and paste or will probably lose the whole thing lol 

  • Horselady
    Horselady kathryn07219

    Posted

    I am really sorry you have been "written off" - I fear the same is about to happen to me. I live in Bermuda and have been seeing a great urologist at Johns Hopkins in Boston. I started seeing her because of recurring and resistant UTIs. so I am interested in your reference to your bladder infections - a coincidence? I also was a horseback rider - all of my life and two years ago I brought my own horse to Bermuda. After getting into a routine of daily riding, I started having the UTIs and then the LS developed. I stopped riding and eventually we got the UTIs under control but the LS developed and has been worsening at an alarming rate. Last week I had a biopsy done and yesterday I was very relieved to learn I do not have cancer. However, my urologist, rightfully so, has told me she no longer needs to see me as the UTIs are under control and is going to speak to two other (female, thankfully) specialists - vulvar and one other (dermatologist perhaps?) and get back to me.  My fear is that they will deem LS incurable - somewhat manageable - and I too, will be written off.  With that I will have no choice but to manage as best I can. I know now I have to give up my life-long passion of riding horses - heartbreaking as I have waited decades to reach a point where I could afford to return to the pastime I love best.
  • karen41728
    karen41728 kathryn07219

    Posted

    I know just how you all feel I have lichen planus and my doctor is the same I have been on anti depressants for 2 years now it drives me mad, it was actually my dentist that diagnosed it sent me for a biopsy in my mouth I have burning with spicy foods also problems at the other end, nobody wants to know, I am 57 went through the menopause early I had abnormal cells after a smear rest and colposcopy I am positive this is all related, anyone else had this x
    • pat48434
      pat48434 karen41728

      Posted

      I had LP for about four years now.  For three years I have had Lichen Planus, (LP but in the gums and mouth area.)  There is a third kind I understand of the skin.  I had a mark about 1 inch long on my wrist and just had a biopsy done this week.  The Derm thinks it's cancer.  I have a historyof skin cancer.  I have also had a problem with UTI's for the last two years.  One after another really reeks havic with LP.  Good luck to all my friends out there.

        

    • karen41728
      karen41728 pat48434

      Posted

      Hi pat

      Hope all goes well for you must be hard dealing with that and having your daughter to look after, please keep in touch let us know how things go

      I'm 57 and have Lp orally and skin nothing but a nightmare with itching

      At the moment my mouth is so sore with splits on either side nothing seems to work so Iv left everything off and it feels a bit better this morning

      Have you ever had any problems with smear test when you were younger only I'm positive that there linked, have you ever had treatment for abnormal cells

      Take care pat and good luck x

    • karen41728
      karen41728 pat48434

      Posted

      Hi pat 

      just wondered how your getting on..... Thinking of you X

    • pat48434
      pat48434 karen41728

      Posted

      Thank you Karen for the kind words.  In reading other snippets I found that several women mentioned taking Amlodopine for blood pressure and angina.  I am on that med so I did a little research on it.  It affects swelling on legs and feet, which I have also skin problems.  Just wonder if other women are taking the same drug?  Stay well as possib le Karen.
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.