Is anyone getting treatment in the U.K.?

Posted , 23 users are following.

Most posts here seem to be from America. Is there anyone out there getting treatment in the U.K.? If so where and what? Are there any specialists?

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  • Posted

    Hi you need to see your doctor and ask to be referred to a dermatologist or gynocolagest you will get treatment you need have you had LS  confirmed  
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  • Posted

    Hi I'm in the uk. I was referred by my doctor to a gynaecologist at the Hopsotal who confirmed the diagnosis and treated me (steroid cream and amatryptaline have worked for me)

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    • Posted

      Hi jules. I was first referred to a gynaecologist who diagnosed LS and I was put on steroid cream and vagifem to insert. Then I was referred to a dermatologist. I had biopsy to check for cancer (all clear) and now have steroid ointment (dermovate), lidocaine and dermol wash.  Amatryptaline has been mentioned but seems to have a lot a side effects so not tried that yet. How do you find it? I am treated at the RVI Newcastle, where are you?
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  • Posted

    Hi I am in the UK, I rather feel I am dealing with this on my own.
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    • Posted

      Hi Teresa.

      I pretty much feel the same. You get this diagnosis and are left to get on with it. I don't know if I'm expecting a cure ( which I know there isn't) but having to look and check every day and put on ointments makes you a bit paranoid about what is happening and even if what is happening is the same or different to others. I've also been diagnosed with some sort of lichenoid in my mouth (mainly my gums) which is another worry.

      We aren't alone, but you feel like you are. Are you getting good treatment? 

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  • Posted

    I'm in Australia and the treatment here is not unlike what is prescribed in the US; think they are reading from the same script.  I find the comments on this site most helpful.

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  • Posted

    Hi LSpatient.. I am being treated in South Yorkshire by a good dermatologist at the hallamshire hospital. I was given the usual steroid ointment and she recommended Zinc & Castor Oil cream for moisturising and Dermol 500 for washing. I am now in remission but still on the maintenance dose of steroid just twice a week. I have to say the zinc & castor oil cream has in itself been amazing and I’m sure one of the main reasons I am now symptom free. 

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    • Posted

      Hi, just from a local chemist but not all of them stock it but you can order it.  I was using sudocrem on my groin as it looked like the LS had spread there and the ‘milder’ steroid I was given had left me burning and peeling! After a few days I found the sudocrem was just not helping and making me even drier. I rang the hospital and was advised to use the Z & CA cream. It cleared my groin problem in 48 hours and since then I have used it inside too and the skin is looking very healthy again. The pharmacy told me that it’s a lot milder and more of an emollient than sudocrem but still has good antibacterial properties. 

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    • Posted

      I also need to add that after a wee I try and rinse then pat dry then apply either the dermol 500 inside or the zinc & castor oil. I also have three friends with LS (not as ‘rare’ a condition as everyone thinks).. and they are trying the same things as me. Just hoping it is as effective 🙏 for other people too. Also I am post menopausal so have the vagifem twice a week. 

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  • Posted

    Hi, I'm in Ireland. I was diagnosed a year ago. I'm on dermovate ointment and Protopic cream. I am also on methotrexate injection once weekly. I just want to caution you about Amitriptyline??. My daughter was on it for migraine and unfortunately it caused two seizures 😱. She couldn't drive for 6months, she couldn't be left alone, she couldn't socialise. It really impacted her life. Her shoulders dislocated during the seizures and she's still having problems with them. I'm sorry this is not LS related but when I saw Amitriptyline it just rang alarm bells.

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    • Posted

      Hi Caroline. I'm so glad to find someone else in Ireland. I'm in Meath. I was diagnosed 2 months ago and in an awful way. I'm allergic to dermovate so I'm using Betnovate instead. I was advised against amitriptyline and glad I didn't take it even though it was prescribed. Desperation is setting in and I can't seem to find anyone specialising in LS or a support group in Ireland . Wishing you and your daughter well, Trisha

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  • Posted

    Hi there I am in the UK, there are lots of us on here. You

    will find that overnight posts are usually from the states UK people message in the day and evening. I don't see a specialist at the moment, but if you are in the NW there is a Vulval Dermatologist in the area. If you Google vulval dermatologist and your area you should get lists up. Good luck

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