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this is Not Good

Posted , 8 users are following.

jane08222
jane08222

I am 71.....never heard of lichen sclerosus....and for the last seven months I have tried to control it, make the sand paper feel go away...the pain.....tried to stop or at least slow this horrible disease down.....the Drs take one look at my age, and pretty much dismiss everything I say..I am depressed, my husband and kids are clueless, but want to help....anyone else going through the same emotional/physical things???

1 like, 20 replies

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  • andrea58721
    andrea58721 jane08222

    Posted

    Hi Jane, I'm 69 and I've had similar experiences with doctors. I can relate to what you're feeling around not being believed. I think it's a form of abuse when someone is an elder, has been newly diagnosed, and is being treated like a bimbo. You might want to share that thought with your so-called doctors. I suggest you to take written questions when you see them, and write down their answers. Also to walk out with a copy of their records of what went on during the appointment. Where I live (Canada) those records belong to the patients by law. That way, you know more what they're thinking, and you can hold them accountable. Most of all, hold yourself high, and believe your own experience. You shouldn't have to put up with this kind of treatment AND newly diagnosed lichen sclerosus.  Big hugs,  Andrea

  • Wlparadise
    Wlparadise jane08222

    Posted

    Are you on Facebook?

    There are hundreds of women on various pages. We discuss failures and successes in controling symptoms. Borax sits baths, Tacrolimis, Mona Lisa Touch Treatments, Ammens zinc powder, non soap body wash. How to wash undies. Lots more. I am 63. My mother is 81. We both have it. Mine is worse. If you are on Facebook. Search the word Lichen Sclerosis. Do not join the 5star group. The best group has a post it at the top... YOU ARE NOT ALONE... join that page to start.

  • Guppy007
    Guppy007 jane08222

    Posted

    Hi Jane, the doctors can make you feel worse, there is no denying that.  They do this because they are often clueless and rather than admit to that fact they turn it around and make out that you're muddled.  The key is to become informed, be your own advocate, and that means reading as much as you can about LS. 

    If you go to the top of the page and click on Lichen Sclerosus you will then see many older threads and I would recommend that you start to read them.  Take notes and write everything down that is important.  Can you share what exactly are your physical symptoms at the moment? because LS has a long list of symptoms, and we will try to help you.

  • diana71766
    diana71766 jane08222

    Posted

    Good morning, reading all the emails this morning I am feeling the worse thing we can do is beat up on each other. We are strong together. Also we need to heal us first before we worry about inconvience to others. Example spouses. Live with it we are. We need to find what symptoms we have in common to understand this disease. I care and pray for all of us.
  • martha91317
    martha91317 jane08222

    Posted

    I’m 73 and I’ve been going thru this for several years. So discouraging to know there is no real cure for it. Only meds to control symptoms. I go on june 6 for a biopsy. I’m very scared.
    • diana71766
      diana71766 martha91317

      Posted

      If they numb you correctly it will not hurt. Be persistent. Good luck. Praying for you.
    • Cheetah
      Cheetah martha91317

      Posted

      Don't be scared, Martha.  I've had two and, once they have numbed the area, I couldn't feel a thing.  Hope it goes well for you.

    • barbara66176
      barbara66176 martha91317

      Posted

      Hi Martha, so sorry to read about all of this. I am 69 and was diagnosed with lichen sclerosis by my doctor last year. Used clobesatol and it seemed to clear up until about a month ago when I noticed my clitoris and area around it was covered in white.

      My doctor has referred me to see a gynaecologist for a biopsy which I am absolutely terrified of.

      In the meantime I was told not to use clobesatol and just to rub in cetraban to keep the area moist.

      My heart goes out to everyone with this awful condition.

      Big hug x

    • Guppy007
      Guppy007 barbara66176

      Posted

      Hi Barbara, you do know that you don't have to have a biopsy..all they will tell you is what you already know, and that is that you have Lichen Sclerosus.  White plaques of skin are classic Lichen Sclerosus.  Most doctors that know their stuff can give a visual diagnosis. I understand that some women become frightened and think that they need this but really they don't...I never had a biopsy, my gyno took one glance and said it was Lichen Sclerosus.  There are cases where you might need a biopsy if there is a persistent sore/lesion that never heals but not if you are just showing the classic signs of LS.  If you start applying the steriod cream onto your clitoris twice a day for a couple of weeks it should clear up..you could tell them you want to try that first.

       

    • martha91317
      martha91317 barbara66176

      Posted

      Hi Barbara! I’m terrified to. I’ve had this for several years. I’ve seen my gyn every 6 months since I was diagnosed. Saw her 2 weeks ago and she said that a red “bump” that had been a “2” was now a “3”. She said sometime this can go in a skin cancer. (It begins with an s skin cancer) Hope that makes since. Then I’ve had to wait 3 weeks to go back. I’m a basket case. Woke at 3 am and can’t get my mind off it.
    • barbara66176
      barbara66176 Guppy007

      Posted

      Hi Guppy, thanks for your reply and information about not having have biopsy, the thoughts of cutting through my clitoris makes me feel sick. To crown all I googled the name of the gynaecologist and there was a review about him saying that he was very unfriendly and didn't listen to patients conserns!! This has added to my fears. The embarrassment of the whole thing is too much to bear. But at the end of the day I suppose I just want some peace of mind.

      Big hugs again x

    • barbara66176
      barbara66176 martha91317

      Posted

      Hi Martha, this is so awful for you and it's easy to say don't worry....you are in good hands, you are being looked after, I supposed some people are just too terrified to even visit their doctor.

    • barbara66176
      barbara66176 Guppy007

      Posted

      Hi Guppy, I forgot to add on my last post that I had been using the clobesatol twice a day for 2 weeks....without any change in skin. That's what spurred me on to seeing doctor again. I can't help but wonder why she told me to stop using clobesatol, to be honest, I think I might try using it on the odd occasion as well as the cetraban.

    • Guppy007
      Guppy007 barbara66176

      Posted

      Hi Barbara, One of the main problems that we all have is the level of care that we receive from our doctors.  Many, many women come onto this site telling horrible stories of how their doctor misdiagnosed them for years..my point is that it is important to understand that many doctors don't really understand or aren't all that well informed with regard to LS. 

      So, it is down to you to learn as much as you can to enable you to talk and challenge your 'specialist' and not to be fobbed off. 

      I am not sure why your doctor would tell you to stop using the steriod cream when you are still white in certain areas, and I think she's wrong.  The white areas will not go away on their own without the steroid cream in that particular area.

    • arlee
      arlee martha91317

      Posted

      Hi Martha

      I joinrd this group many months ago. Didnt post for quite a while but im back. 

      Ive been suffering from vaginal byrning for years- off and on Good months and then very painful ones. The doctors attributed it to menapausal dryness. 

      Last June i had another set back. Awful burning and discomfort. My gyno retired so i found another young gyno who perscrived different hormonal creams - which burnt me worse. I used vagifem as well - still had burning. Finally after months of seeing her and a urogyno as well, it was advised that i have a biopsy. Both doctors said I have LS because my archicture was changing  and the skin was thinning. I never had white patches or itching. I used the clob but that irritated me. Then i used mometasone - also burned.  I was terrified for the biopsy which i had on march 5. The doctor was so nice. Heused gel before so i barely felt the freezing. I had a punch biopsy. It took time for the biopsy site to heal. I used eucerine aquaphor on it 

      So finally and i mean finally - it took 2 months to get results - it is LS after all. The doctor that did biopsy (in hospital) told me to continue with aquaphor and vagifem. Im seeing  my gyno in june. I need to get the right medication for this 

      Im very confused and hoping my doctor will guide me. I had some peace for a few weeks but burning is back again 

      Sorry this is so long.  LS i understand is rare but it seems to ne thst many wonen have it - sadly to say

    • martha91317
      martha91317 arlee

      Posted

      Thank you for telling your experience. Mine is similar. I have good days and bad ones. Had a bad couple of weeks when gyn took me off clob and called in another that she thought might be “cheaper” felt like I’ve been burned. Called Saturday night and got her partner and she called me in the clob. I’m beginning to feel better. Hope it doesn’t take 2 months to get results of biopsy back.
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