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Question about long term LS

Posted , 10 users are following.

Md81
Md81

Recently diagnosed and given Clobetasol cream and told to use it for 3 months before I return to gynecologist. It has made my vulva very thin which I know is supposed to happen. I'm now getting very thin white spots on the inside of my upper thighs however I never put any cream there and I have followed all directions from the doctor. I have a dilator which was working at first but now it's often not able to go in.  Are the white spots on my thighs evidence of some type of cancer or is it LS in another spot now? Has anyone been diagnosed with cancerdue to LS? That is my biggest fear and main concern. I've read almost every thread here and on the internet and I don't see anyone talking about their LS becoming cancerous. Which I hope is because it didn't happen... any further insight? To say I'm scared is an under statement. 

0 likes, 14 replies

14 Replies

  • Guest
    Guest Md81

    Posted

    There is a VERY small chance of cancer from LS but it can happen. I don't think spots on your thighs are cancer but if you have concerns (and I know where you are coming from as I was very scared when first diagnosed) I would call your gyn and ask to be seen now. The gyn should be able to put your concerns at ease. If that doesn't happen then I would check into seeing a LS specialist. I am not sure if you are in USA or not but there are specialists out there. I was not happy with gyn I had as he didn't'T seem to know much about LS so I looked around and foun specialist. Any time I have concerns they get in to see her within a few days. I know this is very scary but hang in there. You are not alone. Glad you found this site. I know it has helped me feel better and everyone is willing to share their experiences which has helped me.😊

  • Wafinance
    Wafinance Md81

    Posted

    First, most dermatologists recommend ointment rather than cream. Creams have ingredients that can cause irritation.  My gyro gave me cream, the dermatologist switched me to ointment and it made a huge difference.  Secondly, LS itself causes thinning of the skin.  It may not be due to the Clobetasol.  Third, seek out a dermatologist who specializes in vulvar disorders. They tend to be more aggressive in treatment and see more of this than do gynos.  

    LS can appear in places other than the anogenital area.  Your best bet is to see a dermatologist.  In lieu of that, you should certainly report this to your gyno.  The articles I have read indicate that CA occurs in 4-6% of LS cases, so it is rather rare.  I would not panic, but I would actively seek a second opinion from a dermatologist, preferably one who specializes in vulvar disorders.

    Hope this helps.

  • ann67814
    ann67814 Md81

    Posted

    I would say that it is most likely the LS spreading would use the Clob on it.

    I am being investigated for a possibly precancerous

    condition but have been told it is probably ok but having a follow up soon. I have a sore place but when I had a biopsy (which was clear) it was taken from a different area. It is mostly older ladies who are at risk and even the is most likely to be pre cancer which can be treated. Try not to worry, that won't help, as you are probably aware stress can be an issue. Good luck

  • Wlparadise
    Wlparadise Md81

    Posted

    Join the Facebook page got lichen Sclerosis. The pic has a post it " You are not alone" there are several groups. Some very clique and judgemental about new ideas. But that group is great. As far as cancer. 3% chance, statistically. AQUAPHOR is a good skin softener and barrier. CVS has it. As far as dialators go... are you using a graduated series of these? Because you shouldn't be fusing more with the Clobetasol or steroids in general. Steroid is a go to one size fits all kind of dermatological treatment. It's really trial and error. Research Mona Lisa touch treatments. That will change your atrophy. I have had 3vof 6 treatments. Wonderful.

    • Guest
      Guest Wlparadise

      Posted

      Do you need to have a Facebook account as I do not? Are you on the US? If so where did you go for Mona Lisa touch treatments? Did you need referral from your doc and does insurance cover it?
  • Md81
    Md81

    Posted

    Thank you everyone for the answers in a really quick and timely matter! The dilator is a gradual exercise and the cream is an ointment. I used a poor choice of words. It's clobetasol .005%. 

    The white spots on the skin are already very thin skin and I feel if I add the clobetasol to them they're going to become even thinner. My follow up with gyno is in a few days which will make it 3 months of using the cream however it's still fusing which worries me. Shouldn't I be seeing results by now? 

    Although I'm going to be seeing the gyno soon, do you all think I'm better off seeing a dermatologist rather than a gyno?

    Basically which type of doctor do you think I should be seeing?

    Speaking from experience do you all think this is just a disorder I'll have to live with which will include flare ups accompanied by "good times"? Bare in mind I've been misdiagnosed by a local gynecologist for about 3 years who kept insisting I was having recurring yeast infections. Do you think that going for 3 years of not being diagnosed caused irreversible damage and will lead to cancer? Or is it still early enough to stay on top of it? Sorry for all the questions!

    • Guest
      Guest Md81

      Posted

      The first gyn I saw also said it was fungal and kept giving me ointment to treat yeast. It took about 7 months before they did biopsy. I only had redness no burning or stinging but by time they did biopsy I had some white patches. Needless to say after I got diagnosis I changed docs to LS specialist! LS is a lifelong disorder, there is no cure only maintence. I have used clobetasol once a week (after the redness was under control and specialist felt it would be ok to do that) as maintence for almost three years. I have had no itching or burning(although I never did even in beginning) but have noticed that the right inner labia looks like it has "melted" and only a ridge left. This disorder affects everyone a little differently and what works for one may not work for all. It is kind of trial and error until you find out what works with you. Some women have bouts of intense itching and burning and others like me, are blessed not to have those symptoms. As far as which doc you see, that needs to be your decision. Which ever you feel comfortable with, who listens to you and helps you. The LS I go to did a fellowship in which they focused on this disease. Good luck and keep us posted on how you do and what gyn tells you. I have appointment next week with my LS specialist and have a list of questions for her! We learn a lot from each other on this site. 🌈

  • domino58
    domino58 Md81

    Posted

    Don't let the thought of cancer worry you. My gyni said there is only a slight increase in risk, they will keep an eye on you anyway.  Get y our spots checked out it may have nothing to do with the LS.

    wish you all the best.

  • ann67814
    ann67814 Md81

    Posted

    Have you watched Professor Goldstien's lecture there is a link on this website. Well worth a watch and it explains about the skin thickening in LS and the part it plays in the fusing.

    • Guest
      Guest ann67814

      Posted

      Thank you for this info. I am going to watch it now!
  • Md81
    Md81

    Posted

    I'm going to watch this video I honestly forgot earlier. Does anyone have experience with lesions associated with LS? I have lesions that don't seem to be improving after 3 months of the ointment. 

    • ann67814
      ann67814 Md81

      Posted

      I have a lesion on the inner side of a small remainder of a labia. I have had this for 8 months. I had a biopsy 2 months ago which was clear but Gyni too biopsy from wrong area. He was unconcerned about it but due for a review soon.

      My GP suggested that I use the strong version of the steroid twice a day for 2 weeks then once a day also for 2 weeks. There was a reduction in the angriness of the appearance but as soon as I left it for 2 days it is Back very angry looking obviously quite sore. Hope this helps.

  • jean71564
    jean71564 Md81

    Posted

    Hi. I also have been diagnosed with LS and also dysplasia from the biopsy. This to me means I have cells that are suspicious. I am to come back to her in 2 or so weeks again. I am very scared about this. My pain is still unbearable when I pee. The burning is awful. I try and wait to go very last minute. Do you have the burning problem.
  • beth51904
    beth51904 Md81

    Posted

    What does your lesion look like? Is it raised, flat, red.... did the leauon appear 3 months ago? Do u have bouts of crazy intense itching? 
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