Recently diagnosed but no follow up...

Hello Sally

 Are you having any follow-up after the colposcopy? If you have a named gynaecologist already, there is nothing to stop you phoning his/her secretary and asking for an appointment to be seen for follow up re: lichen sclerosus. They may be able to give you an appointment if your referral for the colposcopy treatment is still open. Otherwise, did you ask your GP to refer you back to the hospital for follow-up? I think you are at least entitled to ask, especially as there is a small associated increased risk of cancer amongst women with a diagnosis of LS. I think there is some research that indicates using a topical steroid probably reduces the risk, so it's probably a good idea to use it. If you think your anal problems may be caused by piles, your GP should be able to examine you to confirm or otherwise as steroid cream doesn't treat piles. Again, if it is piles and they are troublesome, you can ask to be referred to see a specialist. I am also in the UK, diagnosed last year and currently being seen by a gynaecologist at my local hospital in the Midlands. Best wishes.

My gp referred me to consultant dermatologist rather than gynae. Was told not to use any steroid cream as the skin is too thin and delicate in this area. Was told to use sudocream (used for nappy rash!) or vasoline as a barrier.

It certainly worked for me after years of discomfort. I saw the dermatologist every six weeks for a year. It’s improved so much that I now have an open appointment for a year, just in case I have any problems

Hi Sally, I am in the UK too and being treated by the NHS.  I saw a gynocologist who did a biopsy and diagnosed the LS.  She asked me what follow up I wanted.  My choices were: self-monitoring, GP or gynocologist.  I choose gynocologist and she saw me 2 months after the first visit to check how things were progressing.  I then had a follow up appointment 6 months later and since she didn't like the look of things I am back on steroid every day for 2 months.  She says she will see me again in 2 months to see how things look but may have to do another biopsy.    I hope this gives you some indication of the level of treatment provided by the NHS.

Hi Sally, I'm in the UK too. If you can, see if you can find a Vulval Dermatologist, there are a few about. In Bristol there's a special Vulval Dermatology clinic at St Michaels, if you are anywhere near. They do go down the standard steroid route, but it's nice to know you're being kept an eye on. I do my own thing and just go to the yearly checkups. I also have a female GP who is a dermatology specialist, so I struck gold there.

My earlier GP gave me the same instructions for steroid, but the clinic told me to use it for much longer to stop it in its tracks, before I cut down. I was in quite a state. It worked, though I hardly use it now.

Also, the ointment has a vaseliney texture and sticks better. The cream is white and apparently the ingredient that makes it white can irritate fragile skin. Generally use ointment products rather than cream.

The best over the counter thing you can buy is Epaderm ointment. It comes in a big tub for about £12 (I think, it last ages so I can't really remember), and use it for washing rather than soap. Lots of people use Dermol, but it's got a tiny bit of fragrance in and I found it slightly irritated me. I carry a small pot of Epaderm in handbag and, if I have to go to the toilet somewhere where there isn't a basin nearby, I use it to 'wash' with. It stops the urine irritating. At home I use lots of lovely organic things for moisturising, but this product really works better than anything I've found as a soap substitute. You can get it in any chemist's, it's a standard eczema product.

Presumably you already know about avoiding soap and fragrances and keeping well moisturised down below?

It takes a while to get on top of things, but if you follow and try the various solutions people have found, you will find what suits you best. Do try to change products regularly though, maybe have a few and circulate them, you'll get better results that way.

Good luck, we're all here to offer advice if you want it.

Hi Sally I was diagnosed 15 years ago after many years of dismissals and misdiagnoses.  I used the steroid cream and it helped.  A number of years ago, my teenage (at the time) daughter was diagnosed with celiac so we made our home gluten free, and I stopped eating wheat altogether with her.  Nothing short of a miracle, my LS has been in complete remission for years now. My doc even comments on my improvement. I am going thru menopause, so we will see what happens in the next few years, but all is well now. I don't even use the cream anymore.  I tried testing this theory a couple of times, and sure enough I got a flare if I indulged in bread or pasta.  Maybe this will work for you? Good luck to you, it can be a devastating disease.

I've tried Ezekiel bread. I LOVE IT SO MUCH with avocado, but it causes a flare for me.  Maybe it will be okay for you? I hope it is!  I keep a food diary now, kind of a pain, but I have an app that makes it easy.  I hope your condition improves!

I was having miserable issues with my anus. I had read on here that steroid is too strong for that area and rarely used it on my anus. The problems got so troublesome, I asked my gynocologist about it. He said I can use steroid on the anal area.  So I went ahead and it helped immensely! So now I use it there again. My steroid is weaker than the clob many use on here.  That may make a difference.