Recently diagnosed with Lichen sclerosus. Feeling nervous about future treatments.

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It was a shock to realise that the dreadful itching was more than thrush. I had never heard of lichen sclerosus. Even though the chance of developing cancer is small, it still scares me.

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  • Posted

    It is scary. I was diagnosed in 2014, had been itching for a long time, and when Monistat wasn't working, I went to the GYN. Already had lesions. Unfortunately I was diagnosed with Cancer the day before I was supposed to have them removed. It's been on the back burner until recently. My Oncologist had me get a referral to a GYN Oncologist, she removed the largest lesion, sent it for biopsy, on Friday came back as abnormal. I was confused about the diagnosis, but talked to a nurse yesterday that said it's pre-cancer. Not trying to scare anyone, but keep up with it.

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  • Posted

    Hi Caroline , please don’t be scared , it is a huge huge shock , especially as there is no known cure so we have to learn how to live with it . The main thing is keep up with your steroid cream it will put it into remission , make sure you moisturise , uri e can burn so my gynaecologist re immersed carrying a small water bottle around which I pour over after every wee . Then I use sudocreme, people use all sorts of things to moisturise including coconut oil , hydramol etc . You need cotton knickers and I would advise washing everything in sensitive washing stuff . Don’t use soap at all anywhere near the area  , no bubble bath etc . I soak in the bath most evenings , it’s good to do it before you put your steroid cream on , . I was diagnosed in May , also have slight LP on skin and Oral LP , it’s a bit of hard work but you can get on top of it . Don’t be scared please , the cancer risk is minimal and the steroid cream helps prevent this there are some great people on here . Especially Guppy and Nancy who are very knowledgable . My advice is don’t over complicate your routine in the beginning , get it under control and stick with it . Always here for you . Jane xxxxc
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    • Posted

      Thank you Jane for your gentle, kind words. It is a great help to know that I can control the LS even if it can't be cured. My doctor gave me steroid cream and I had a 3-month regime and was then to only use it as necessary. I have my next appointment in September but it seems such a long time to wait. I'm not even sure what I would be looking for in self examination. I'm such a numpty! How often do you check for any changes? I would be grateful for an answer. I'll try carrying water about with me. I think I need a bigger handbag!

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    • Posted

      I know it seems like a lifetime between appointments . I am more au fait with my vagina than I have ever been . I shower in the mornings and then moisturise , while I am doing that I have a “feel “ about for anymore fusing etc . I look in the mirror once a week , I think that’s enough . Lol . The psychological side is very hard to deal with , so be kind to yourself , it’s not your fault . Are you in the U.K. ? Xxxxxx
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    • Posted

      Yes, in Scotland. Thank you Jane. I am still in shock I think but your reply is so helpful. I'm starting a conversation with my husband which is good as I don't have to keep everything to myself anymore. I also told him I was conversing with other ladies with the condition and how helpful it was, so I'm feeling a bit more relaxed about it. Moral support has meant more than I thought it would so thank you so much.

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    • Posted

      Hi Caroline 

      There is a good group on FB if you are on it . If you join the U.K. one there is a lot of useful information on there . My other name is Spencer if you wNt to search for me . Sometimes it’s just great to be able to let off steam xxxxxxx

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    • Posted

      Hi Caroline, I am a Scottish male with LS and was diagnosed 7+ years ago.  Your Doctor saying 'only use when necessary' was not only being totally unspecific to you, but maybe putting you at unnecessary risk of fusing of skin in the vulval region and the worsening of your symptoms entirely!

      I would say it is essential to find the correct level and frequency of application of the steroidal cream that is right for you, now!  Hopefully you will have been prescribed Clobetasol, most often in the Dermovate, or ClobaDerm Brands here in the UK?  If you have a weak steroid cream this will likely do nothing for you, and, therefore allow your symptoms and the affected skin to worsen.

        You need to check yourself down there to see what is going on every 5 days or so - and if you are NOT using not using Clobetasol go back to the Doctor and ask for it, and if there is a refusal for this, ask for an appointment with either a Dermatologist, or even better, with Vulval Conditions specialist, even if you have to travel quite a distance to see one.  Do not forget, any NHS patient has the right to see a specialist such as a Vulval Conditions Specialist, so assert that you want this sorting, and the sooner the better!!!

      In terms of application of the Clobetasol, I would suggest starting with every other day, use a thin coating of a small amount on the affected area, worked well-in / or massaged in to the skin.  If you get a positive reaction and your skin improves you can then add an additional day when you are not applying the Clobetasol.  Most Women on these forums probably say they are best to apply the steroid that suits them best (this is where the Dermatologist comes in best to identify the particular steroidal) once or twice a week, while other must apply it every 3rd, every other, or sometimes ever day.  Obviously, if you get no improvement, you may not be applying sufficient, or may not be working it into the skin sufficiently!

      Don't wait til September - you have really vital time NOW, to get your LS under control and find the best ways to get the condition in remission ....... Good Luck .....

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    • Posted

      Lichen sclerosis-sclerosis U.K. support group . There are two or three  andalso Lichen Sclerosis support group . , these are two good ones , remember to pick the bones out of some peoples posts or you will be thinking all sorts xxxxx
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    • Posted

      Hi Wee Dougie, I will take your advice on board and see to it. It all seems to have calmed down for the moment but try as I may get, I am still anxious. I'm sure I will get used to this. Thank you for your support. I wish you well. Caroline

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    • Posted

      I have tried to find you on one of the group's but the lady I wrote to was obviously not you. I'm not brilliant with Facebook or computers. I will keep looking. Thanks for help.

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    • Posted

      Hi Jane, I joined 2 groups: one is called Lichen Sclerosus - Management Support and Lichen Sclerosus - UK Support Group. My surname is Gillespie. Thanks.
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    • Posted

      Hi Wee Dugie, thanks for all your advice. I had my September appointment the and she was quite pleased with me. I only use the clobetasol once a week and I seem to stay the same. I have an annual appointment but can be referred again before that if I feel I need it. Thank you so much fir your support.

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