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?
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
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)
Hi I am in the UK, I rather feel I am dealing with this on my own.
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.
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?
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.
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?
Thanks Jill. Where do you get zinc and caster oil cream from? Glad to hear you are now symptom free.
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.
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
I am in the UK - South West - and have had LS and LP for 4 years. The treatment I have had has not been very useful and I have been discharged from all clinics as there is no more that can be done unless I want to try systemic acitretin. I don't as the side effects are pretty horrendous, it may not work, it does not reverse the damage and, once you stop taking it, it will probably start up again. The "maintenance" twice weekly steroid cream for vulval treatment no longer appears to have any effect and the best I can do is apply castor oil whenever I get an itch/pain to try and stop adhesions occurring. I have tried very many things over the years and, for me, the castor oil has been the most useful. Diet does not appear to play in part in my case, although I appreciate it does for others. I'm afraid it's a case of try everything and see what suits you. I'm afraid the best advice I can give, and it's difficult to follow, is: do your best and try and just get on with your life - don't let LS take over.
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.
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.
I’m from Yorkshire and I was biopsied and discharged. NO aftercare just left. I went to the GUM clinic and they check me six monthly now. Since my last check in July severe aggulation has occurred, my next check is in two weeks, the GUM clinic have been great compared to the gynae dept at hospital. You can google vulvar skin specialists in UK and see if one is in your area. The Spire have specialists as well. I learned a lot from this forum more than the hospital.
Hi ask to see a specialist nurse at the hospital. They are specially trained.
Yvonne
Hi I am in SE, Hampshire/West Sussex border and was diagnosed by my GP which was then confirmed by gynae who is cancer specialist. My GP is treating me at the moment and has said that dermatologists and gynaes have same level of knowledge of LS in our area, so I am guessing I will be referred back to gynae if things worsen. At the moment I am using prescribed betnovate steroid cream, epaderm to wash, amitriptyline and oestrogen cream (I am 64, post menopausal), and for myself unprescribed: emuaid, emu oil or coconut oil and borax! Basically anything I can throw at it that helps. I am interested to read about Zinc and Castor Oil on this thread too.
What I find frustrating is that there is no support for the psychological effects of this. No sort of understanding of how devastating it is to watch yourself deform so drastically as well as having the worry of possibly developing cancer in time. It seems we are all told the same thing: it is incurable , steroid cream is the treatment to keep it managed - so go away and get on with it.
If anyone knows of a specialist in my area I would be pleased to hear from them. This forum is so helpful.
I am in the South West too and get my treatment at Derriford Hospital. I have a 6 month follow-up appointment later this month. If there are any questions you think I should be asking please let me know. I seem to have it under control at the moment with clob and borax.
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
I am in the South West too. Have you tried the Borax? It's been good for me. Also there is a specialist Vulval Dermatology clinic at St Michels in Bristol where LS is the most common condition they treat. I also have a doctor who is a dermatologist and sees a lot of it. She says that each one of her patients feels isolated but it is SO common, she says people have no idea because they don't talk about it. Thank goodness for this forum!