In need of advice and encouraging words!

Posted , 6 users are following.

Hello everyone! I was diagnosed with LS a month ago. At first I only showed some hypo pigmentation and an anal abrasion. I was put on Clob twice a day for two weeks then Tacrolimus once a day with no end date. Since starting treatment my condition has gotten MUCH WORSE! I now have multiple ulcers throughout my anal area and a few on my inner labia. I had a few tears on my perineum but I have notice an improvement in that area. Neither my derm nor gyno were of much help. I am seeing a specialist tomorrow and praying he can help me get things under control. Has anyone else experienced this? I don't understand why things have gotten worse when the ointments are supposed to be stopping my symptoms from getting worse. Warm soaks are what help relieve the itching, burning, pain the most. I soak for 10-20 mins with baking soda everyday sometimes twice a day because my symptoms are so bad. I also use coconut oil. As far as the ointments go, I've started to go back and forth between the two hoping the Clob would help given I've read its stronger than the Tacrolimus.

I'm sorry for such a long post! I just need some advice and words of encouragement. It's hard talking to others who have no clue what I'm going through. I am only 38 and have hopes of having a child but there's no way I can in this condition. I want to be able to live a life without this constant pain! Thank you to everyone in advance! xoxo

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6 Replies

  • Posted

    yes, mine got worse too, my doctor told me to cut down on the clob and use it only three times a week

    and when I do use it to rub it in for 10 to 30 seconds

    also make sure you completely dry down there after bath, shower, and peeing even if you have to use a hair dryer on low setting

    use moisturizer like vaseline or olive oil several times a day

    mine is finally getting better after 3 months

    you will find what works for you, keep going to your doctors and trying different things

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    • Posted

      Thank you for your reply. Hopefully the specialist I'm seeing will guide me in the right direction. Knowing you had a similar situation and saw improvement in 3 months gives me hope! Thank you!

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  • Posted

    I was diagnosed 4 years ago. I would come and go and i would use CLob and the itch would subside. NOthing works anymore. Ive got three different creams, none seem to work. i have to take a sleeping pill to be able to get thru the night. Ive got an appt with a Gyn. in Feb. HELP!!!!

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  • Posted

    I had similar response the first two weeks but here is the important thing: you need to be on clob for 12 weeks 2x day. It doesn't work overnight. The "getting worse" part is probably not due to the clob but to the fact that your LS disease is flaring.

    I was very discouraged the first month but stuck with 12 weeks and by the end it was stopped.

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