Lichen Sclerosus

Posted , 9 users are following.

Hi

I am totally depressed!  I was diagnosed with LS about 18 months ago.  And despite using Dermovate I cannot get it under control.  I am now getting ulcers and they have done a biopsy to see what that could be.  I am totally alone,  and with this disease it looks I do not have a chance of ever being with anyone, as sex will be very difficult!  And I want a life, and at the moment I haven't got one it seems!  I don't know what to do, I really don't!  I have a hospital appointment next Wednesday for results.  I am praying they can help me because I cannot go on like this with constant pain!

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  • Posted

    Hi,

    you poor thing.  I think it's the loss of control we feel when we are trying to solve the issue but feel like we are getting nowhere.  Also I myself think we need support psychologically with this disease just like any other disease as emotionally because it is part of our femininity it affects us.  It is after all a very intimate area to have people to look at, well it is with me anyhow.  Do you have lesions that are sore?  I also have developed ulceration which I am worried about and have only developed since Christmas.  Do they cover a large area?  Mine seem to have fluid in as well.  Do you think that the dermovate has caused dermatitis of some kind?  I got told to stop putting it where the ulcers are and got told mine was vestibuladynia and in the area where the ulcers where.  I'm just wondering if you have anything like that plus L S?  I know it's depressing as we just want the condition diagnosed and then a treatment plan but things seem so slow some times. X

    • Posted

      Hi. Sue

      Thanks for replying.

      Yes I have ulcers that are sore.  The whole area is red raw a lot of the time.  The Dermovate helps to some extent but I am concerned that I am using it every day, at the moment twice daily!  I don't know what vestibuladynia is?  I will check it out.  I will know more next week I hope.

      Do you have a partner?  I am trying to find one!  Now men obviously want sex!  So how can I ever find someone!  If I don't get help with this, I feel like I could do something drastic!  Are you getting anywhere with this? J x

    • Posted

      Hi,

      its a depressing battle getting diagnosed as I don't have just LS.  You can ask for a copy of your biopsy results.  I would be very interested to know the results.  Are the ulcers new?  I am very red as well never used to be. X 

  • Posted

    I have found relief of skin soreness with daily use of a moisturizer. Try Aquaphor or vitamin E or coconut oil. I think that stops any cracking of this delicate skin. And I think a bath with 1/3 cup of baking soda helps with inflammation. And talk talk talk to your doctor. For LS, the Clobetasol (steroid) is the best medical treatment they have.
  • Posted

    Hi

    Mary I have the Clobetasol steroid.  It helps but I still cannot get this under control!

    Hopefully the biopsy next week will give further help on this disease!

    • Posted

      Hello again,

      I am sorry. Are you itching too or just hurting? Are you wearing cotton panties and loose pants?

      I hear you worried about having a partner someday. You will get better. And someday you will be confident and in control and you will be able to have a love life with sex.

      Try not to distress. I always wanted my family to tell me "It's okay Mary, you'll be alright " when I have had dark moments. So let me say it to you- it's okay, you'll be alright. With a smile knowing how bad you might feel, be patient and be kind to yourself.

  • Posted

    Hello

    Thanks Mary.  Yes I wear cotton underwear.  Thank you for your good wishes.

    I didn't used to have ulcers but I do now.  And I wasn't as red and sore!  Where they took the biopsy, there seems to be a whole there.  Does this go away?  And now it is very sore next to this area!  I think another ulcer is forming despite using Dermovate cream!

    • Posted

      Hello, I wondered if the LS is ever so sore and uncomfortable that it actually makes you nauseous at times? I'm using Clob but it doesn't seem to be doing all that much. I have a 6 month followup appt in a few weeks but right now I'm finding myself nauseous because of the soreness and discomfort.

  • Posted

    Hi, Have you modified your diet at all? have you tried eliminating some foods to test that you are okay with them, like Gluten, and Dairy for example, because unfortunately for some women diet plays a huge role and so it might be something you want to think about if you have not already.  I know that Gluten is toxic for me, and will definitely bring on a flare up if i ever cheat, and so nowadays it is out of the question.  Sugar is also a HUGE trigger for some women, and so that has to be watched also.  I know it is depressing but it might be that you will need to try completely eliminate gluten for a month to see if things improve, you will have to stick to it rigidly, and by the end of the month you should have an idea if things are better.  

    With regard to the ulcers, if the ulcers are on the outside of your Vjay, then it is Lichen Sclerosus, but if the ulcers are inside your Vjay, (inside your labia minora) than it could be vaginal lichen planus, I just thought I would mention that.

    I am a big believer in less is more, and I think in your shoes I would lay off the Dermovate for a few days, try bathing in salt water two or three times a day, drying the area well, (you can use a hairdryer on cool setting) and then applying a different cream, even vaseline would work until the intensity of pain reduces, then, after a couple of days of that, when things are calmer, I would stop the vaseline, and  try to dry out the area by constantly keeping it dry, which takes some work, but can often clear things up, again, the hairdryer helps.

  • Posted

    I completely understand! Here is what I have learned and tried... I live in the US so I was prescribed Clobetasol. I ended up allergic to it. I saw a Dermatologist who took me off and switched to Elidel. There is also Protopic. These are not steroids. They work differently and do not thin the tissues. I also use the lubricant called YES- this is made in the U.K; All natural. I also wear silk undergarments/ no cotton. I am reinforcing the thread on Borax mineral solution; works wonders. Lastly, I am undergoing the Mona Lisa Touch laser procedure. This has been life changing. I hope these suggestions help you. I have been driving this train alone for a long time. The Mona Lisa has been the biggest difference!!! Day to day quality of life and sex life is back to normal.
  • Posted

    Hello

    Thank you to everyone for your helpful comments.  I have found that I definitely cannot have onions!  This will give me an attack.  And sugar seems to play a part unfortunately and this is something I cannot do without completely.  I try to ration myself though.  Maybe I have LS and LP, will know more next week.

    Moisturing I think helps.  So today I have been doing this a lot!  At the moment this evening it is slightly calmer and I am not burning, but during the night anything can happen!  I always find the flare up happens overnight!  I have also found, and this may sound ridiculous, but when I get a flare up, I take a anti histamine tablet which seems to help a bit.

    • Posted

      Hi maybe you should be tested for fructose malabsorption as onions are high in fructose, fructose is a sugar which is not good for LS xx
    • Posted

      Hi Justine

      How can I get tested for fructose malabsoption?

      Where do I get this done?

      I think this could be a trigger for me.

      Of course stress plays an important part too!!

    • Posted

      I went to a gastroenterologist as I was having bouts of diarrhoea too.

      Had my bowles checked that was all fine. So then it was onto food intolerances. It's called a hydrogen breath test if I remember correctly. If I have fructose it always kicks of my LS. Wine is the worst

  • Posted

    Hi Powerwoman,

    Have you tried the other treatments mentioned on this site: baking soda baths, the Borax treatment that has been discussed here, using Emu oil or coconut oil throughout the day, etc.?  If not, give them a try.  As Mary said,  you will get bettter and you will be able to have sex again.  I did, so I know it's possible.

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