I need help or advise on LS

Posted , 10 users are following.

so I went to my doctor a while ago and we both agreed that it was LS that I had..he send me to a hospital and they also Agred. I got given cream as it was sever and I have lost a lot of skin because of it..after a while.. The whiteness got better and I was ready to go to my next appointment.. For some Reason it was a different doctor.. He said he wanted to do a biop and make sure cancer hadnt accured and to check that it was LS .. As he done the diop.. He was telling me where he was taking the skin from.. i told him that where's he was taking the skin from wasn't the infected area and that  it was higher up and that where he was taking the skin from had never been effected.. He continued anyway.. Not listening to what I was saying and just taking the skin from the wrong part.. I then got a letter to say that it wasn't LS but I know this is wrong as he didn't take any skin from where I was telling him was effected by LS.. My private skin turns white and itchy and skin can litterally tare off And rip and I have lost a quarter of my upper privates because of this. He took the wrong part And I told him this as he was doing it. I was put in a lot of pain for nothing.. WhT should I do. It's very worrying as I'm 23 years told and if I'm telling them how To do their job.. They with not take me serious seriously. I know I have LS 

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  • Posted


    First I would look for a fremale gyno. They are more sympathetic and will listen to what you say. I went through a lot of emotional abuse at the hands of my previous male gyno. He told me I had herpes and there was nothing he could do. I was devastated. Once I found to my new gyno, I went with printouts from the internet, (yes I had to make my own diagnosis), she said 'it's kind of rare, but a biopsy will tell us for sure'. The biopsy did show the truth. I tried estrogen cream first, then clobetasol cream, the clobetasol helped some, but I still had the tearing. They just approved the Mona Lisa Touch treatments here in the U.S. My doc is doing the procedure, and she has seen much improvement among the patients she has treated. I was skeptical, but I tried it. I saw immediate improvement with the first treatment. They recommend three treatments 6 weeks apart. I just had my final treatment. My skin is plump, pink and doesn't tear like it used to. My husband and I are able to be intimate again, with lubrication. I'm glad I did it when I did, I have read some real horror stories about the long-term effects of LS. I know I don't want that if I can help it.

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  • Posted

    Nikkita, every now and then I read a post which makes my blood boil, and yours was one of them.  The second doctor you saw has behaved incredibly badly bearing in mind you were already having treatment which was working, and you were doing well.  

    For some women reading this post please note that often when a doctor states  "He said he wanted to do a biop and make sure cancer hadn't occurred and to check that it was LS"... this means that basically he hasn't much idea of what's going on, doesn't understand or know Lichen Sclerosus, doesn't want to say that, and so he thinks by suggesting a biopsy he will look like he knows what he is doing...the big clue for you was that he totally disregarded your previous doctors treatment.

    Only when I became quite sick with LS and other autoimmune conditions did the bubble burst for me with regard to doctors, and I realised that doctors are just like everyone else, and not always great at what they do!! many women, like my mother, were brought up to revere doctors, I was also brought up to respect them totally,  as though they were Gods!! But they arent they get things wrong all the time! And more so with Lichen Sclerous, because instead of taking the time to do some homework/research on the subject online, instead they suggest biopsies on poor women by suggesting cancer which is incredibly rare with this condition...

    I am betting that you have Lichen Sclerosus, and I would go find another clinic, find a women doctor, someone that listens isn't arrogant and stupid..

    Sorry if I am a bit blunt, I get like that when I read posts like yours.

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    • Posted

      Yes, agree with you.

      Trust your instinct is my mantra. If I am doubtful I get another opinion. I changed my GP because he wanted to fix it no matter what, even though he didn't know what it was!

      I now have a new female GP & she is fantastic - more a wholistic practitioner, as is my gynecologist.

      Don't ever be afraid to voice your instinct/opinion, we know our bodies better than anyone else.

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  • Posted

    Nikita, you made the mistake I made, that is, trust an inexperienced doctor. After already being diagnosed by biopsy 18 months ago, we moved and I had a new doctor GP six months later.  She had never seen LS or LP before and hadn't a clue. She insisted on a biopsy even though I had my diagnosis and like a fool, I let her. In retrospect, she wanted to either learn about it first hand or wanted practice with her suturing. Either way it wasn't nice and I had a new sore patch which has never healed. Plus it was totally unnecessary!  I used to think doctors were pretty god-like, and to be the experts in everything medical. 

    Changed my GP but also my vulval care is handled exclusively by a specialist dermatologist now.

    Go to a woman dermo specialist, if possible.

    its expensive but if ever you need to spend money on anything, it's to do with your undercarriage! I would rather eat sausages and rice for a month and pay for a dermo than eat steak and wait for a hospital appointment with an indifferent registrar (which is what you usually get)  Hospital gynaes are usually hopeless, especially the men, sorry to say. Not all I am sure, but every one I ever saw in my life.

    You can't do anything about it now, but you know now that it's in your hands to learn everything you can to make sure it doesn't happen again. 

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  • Posted

    Although I am new to my diagnosis, I have read some very good tips on other web sites  One of the most helpful was to use baking soda in water to soak or splash the area.  It is wonderful.  Because the area is supposed to be kept dry (and that is hard), I use a hair dryer on low.  I have also discovered that using a product that wicks moisture away from the skin works really well.  I am now much more comfortable both day and night.  I take 2 showers a day, splash with the baking soda water (1Tb. in 1/2 gallon water), dry with a hair dryer, put my cream on, and put an Always Thin Pad to keep the moisture wicked away.  This routine has eased my pain, burning and itching immensely leaving me feeling much more hopeful.  I understand that the key to this LS is to stay on top of it.  Hope this helps. 
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