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New to LS - start here

Posted , 217 users are following.

Emis_Moderator
Emis_Moderator

Below are various resources for Lichen Sclerosus from leaflets to useful web sites and recommended discussions. You may wish to reply to this discussion as a way of introducing yourself to other forum members and giving a brief history of your situation.

There is a patient leaflet on LS here which also has related tabs with more information, support groups etc.

https://patient.info/health/lichen-sclerosus-leaflet

Below are other useful websites:

http://www.lichensclerosus.net/ - Information to help manage LS

http://www.lichensclerosustreatment.com/ - webinar from Dr Goldstein. Lichen Sclerosus The Unspoken Pain

http://caredownthere.com.au/ CareDownThere is written by a team of Australian Health Professionals with special expertise in treating vulval disease.

http://lichensclerosus.org/ The Association for Lichen Sclerosus and Vulval Health

Includes a page of Men only discussion - http://lichensclerosus.org/men-only-2/

http://www.bssvd.org/ British Society for the Study of Vulval Disease

This includes a "Find a clinic" service. The full list is here:http://www.bssvd.org/images/stories/documents/database%20of%20members%20of%20vulval%20service%20edited.pdf

Discussion on users' thoughts on causes of LS

https://patient.info/forums/discuss/causes-of-lichen-sclerosus--271583

Other discussion groups that may have relevant discussions to LS:

https://patient.info/forums/discuss/browse/alternative-and-complementary-medicine-3763

https://patient.info/forums/discuss/browse/autoimmune-disorders-3827

39 likes, 367 replies

367 Replies

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  • Sue9999
    Sue9999 Emis_Moderator

    Posted

    I see lots of information and remedies to solve problems with itching. I have not experienced the intense itching, but the tissue over my vulva is fusing and my vagina is shrinking. I was just diagnosed in late July and this has been progressing quickly, in spite of nightly mometasone for almost 4 months. I am worried that I will need to be cathetarized in order to urinate, if I can't stop this growth. Has anyone has success with this situation. Thanks for your help.

  • LadySniper
    LadySniper Emis_Moderator

    Posted

    I am 28 years old, college student and mother in Minnesota. I had a biopsy done on Thursday. The doctors thought it was either a UTI or a skin condition. The doctor called to confirm that it is indeed LS. I have been having excruciating pain since Thursday to yesterday. I went to see that doctor 30 minutes away from where I live to tell her I need something for my pain and she wouldn't give me anything. I went to an Emergency Room in another town 45 minutes away with my children and finally that doctor gave me some Codeine for my pain. Just 20 minutes ago, I was going to put the steriod cream that I was prescribed to put on and I noticed where the doctor did my biopsies. She had to take two biopsies on me down there. After she was done, I felt like I was in shock because it hurt so bad. Anyways, I was looking at where she did the biopies and I started crying because one of them looked huge. How can I put the steriod cream on that? I made an appointment with my doctor, but I won't be able to see him for a month because he is booked. I don't want to put the cream on those opened wounds because I am afraid it will hurt and burn and I will have something else to cry about. I feel so sad. It's like I don't have anyone to run to because of this. The doctor and nurse didn't even seem sympathetic. I am terrifed that if I put the cream on it will burn and hurt me. Any advice will be appreciated. 

    • Sue9999
      Sue9999 LadySniper

      Posted

      I am so sorry you had that experience and I hope you are looking for a new doctor. My doctor has been great. She put lidocaine on an injection site on each side, waited 20 minutes for it to numb my skin, then injected anesthetic, so I did not feel a thing and had no pain until I was home. The pain was milder than yours because I started taking a combination of Ibuprophen and Acetaminophen as soon as I got home. (I learned from a surgeon that they attack pain in different ways and give more complete pain relief when used together.) She gave me a  tube of neosporin to put on the open wounds, which were a bit smaller than a dried lentil. She also told me to use an icepack on the area, so I wrapped a bag of frozen peas in a washcloth and kept it between my legs for the rest of the day. I stayed lying down for the day, which I doubt you were able to do with children. My daughter brought me food, which was a big help. I kept quiet for the next two days and then I was fine. I did not start the steroid cream until the biopsy sites were healed.

      DO run...away from this doctor. I called in with a concern once and was offered an appointment days later and I just said that I really needed an appointment asap and got one the next morning. Another option is to go to a walk-in clinic or an emergency room if you have good insurance. Or call your friends and find out who they recommend and see how quickly you can get an appointment there.  The wound that is larger than you expected may be infected, so do get it looked at. 

      I wish you all the best.

    • liz96551
      liz96551 LadySniper

      Posted

      Don't put the cream on open areas- so sorry- I had multiple biopsies done and they take longer to heal because the skin is very fragile

  • Piggles
    Piggles Emis_Moderator

    Posted

    Hi,

    I am so glad to have found this site. I was diagnosed with LS six months ago,without a biopsy by my GP.I am sure I will find all the info here very helpful in trying to understand this awful condition.

     

  • Piggles
    Piggles Emis_Moderator

    Posted

    Hi,

    Not sure where I should be posting but wondered if anyone could tell me if LS burns itself out. I have nothing left of my inner labia. I am 65 years old & have found,like everyone, my diagnosis difficult.This site will be so helpful... I have started to read some of your stories & feel so sorry for all your worry & pain.

     

    • mary09950
      mary09950 Piggles

      Posted

      No it does not go into remission at our age, it does for someone younger. So my first question to my gynecologist was how long to use the Clobetasol and was told forever.

      My reasoning is that my labia wasn't pretty before. I kinda find reason to see what I have now as pretty enough if you know what I mean. I have kinda lost sensitivity but as long as I am not in pain I'll be okay.

      It's almost a daily thing to care for with moisturizing and medicating and being careful not to wear night pants.

      Good to share with others. 👧🏻

    • Piggles
      Piggles mary09950

      Posted

      Thanks Mary....that's what I thought but just wondered how much more will disappear! Presume fusing & disappearing are not the same? 

    • mary09950
      mary09950 Piggles

      Posted

      I think treating the LS keeps the agglutination (what my gynecologist called it) from progressing .

      Are you using any medication? The constant moisturizing also helps.

      Others on this site say that using Borax helps 'infuse'. I haven't tried it yet.

      Also look up Mona Lisa procedure.

    • Piggles
      Piggles mary09950

      Posted

      I have nothing left of the inner labia to fuse. I am using Clob steroid but think it's causing uti infections... never had them before using it. I will read about the borax & Mona Lisa procedure. It's all a big learning curve isn't it?! 

    • mary09950
      mary09950 Piggles

      Posted

      Yes it certainly is. I have become my body's expert along with taking advise from my gynecologist. I now look at my private parts regularly.

      I can't understate the importance of moisturizing and medication management and regular gynecologist visits.

      I don't think the Medication would cause UTI but ask you doctor. Drink cranberry juice and plenty of water.

      Good luck to us all!!

    • Piggles
      Piggles mary09950

      Posted

      Yes,will be armed with a list of questions at my next dr appointment!
  • aileen15053
    aileen15053 Emis_Moderator

    Posted

    Hello I am new to this site. Been diagnosed with LS a couple of weeks ago and I was relieved at last to get a diagnosis as I thought I had all kinds of things like a hernia or thrush. Reckon I've had this for five years but did not go to doc till just before Christmas.

    Quite worried about change in appearance of parts of my body and about ability to have sexual relationship. Using sterile cream Dermovate and wash cream Dermovateand. Not seeing any noticeable improvement over two weeks though.

    • aileen15053
      aileen15053

      Posted

      I mean steroid cream. I am 62 years old.
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