lichen sclerosis

Hi Christy,

Thank you for all your very useful comments! I like he idea of sensitive baby wipes, especially when travelling. The biggest worry is when invited out by friends, as we are always offered wine and I never have the courage to say no, in spite of the fact that it has a bad effect on LS. You are very lucky to have found a friend with the same condition. I long to talk to someone face to face, although this site has been a real boon!

I use dermovate ointment, which I have probably been referring to as cream, by mistake. I find that if I use dermovate alone it quickly disappears, so now I mix it with my moisturiser, which is a barrier cream as well. In this way the dermovate has more of a chance to work.

I can't thank you enough for all your comments! I too have a very understanding husband!

Bye for now!

Horses

Hi Horses,

Thanks for your reply. I was using this site wrong as I am new to using a computer. I didn't realise I had to turn the page, what a dunce I am. I thought no one had used this site since Mrch 2013. It was lovely to get the reply in my email box this morning.

I think because I am open about my condition and talked to many of my friends about it I found one that also had the problem. She is unfortunate to not have a knowledgeable doctor who actually told her that the operation for LS involved turning her labia inside out. He left her with horrific thoughts about it. I sat with her for ages and reassured her. She is now trying to get her doc to refer her to a specialist. The more we talk about it the more it is likely to become more known about. I am sure I had symptons as a young woman. I even talked to a woman on holiday once who had lichen planus. I had been newly diagnosed with LS and she thought that she probably had that as well. She was going to ask her specialist about the difference. If you have the nerve talk to your friends, you may even help one or some of them. Most of my friends did not have a clue about this horrible disease.

As for the steroid ointment. It is only .05% which is not the old fashioned 25% steroid that was responsible for thinning the skin. Used properly it will not thin the skin too much, and the skin has time to regenerate. I have been using it for 7 years, The key is to use it thinly, only when necessary and use the moisturiser. I like the idea of mixing it with a barrier cream. Which barrier cream do you use horses.

Sorry have to go now. Will get back to this later.

Tara

Chrisy

Hi Christy,

You are certainly not a dunce and I love your straight forward approach! I am not very comfortable talking about LS to anyone I am not very close to. I even have problems discussing it openly wih my husband, who is incredibly sympathetic! It is so much easier with people in the same boat.

I use Zeroguent, prescribed by my dermatologist. It is great and mixes easily with the dermovate ointment, when required. Good moisturiser and barrier cream. Some women are like camels and go for hours without needing the loo. This is not the case for me!

Keep in touch and let us know your findings!! xxxx

Hi Everybody I have suffered with itching down below for about 12 years and I am 70 now. Was called to my doctors for a routine smear test because I had a dodgy one years ago then called back twice more and eventually got sent an appointment at the hospital and soon as the nurse saw how sore I was she said I had LS and made an appointment with a consultant who confirmed it. I had been in agony every night ok during the day mainly so she wanted a biopsy done which I have had done today . She prescribed Dermovate very sparingly over the next 5weeks and a moisturiser called Hydromol Ointment which she said to use when needed but From that day 4 weeks ago I have been itch free which is wonderful. Last year I was diagnose with under active thyroid which she said they think there is a link also my daughter-in-law and her friend both suffer like me so have told them to go to the doctors and not suffere like I have for 12 years .

Hi Holiday girl,

Great to hear that Dermovate and Hydromol Ointment have helped you so much. The trick is when your skin is well moisturised, kept free from soap, perfume, bath gel, shower gel and urine, it will usually not itch. Keep it that way and never stop applying the Hydromol or whatever moisturiser you find helps (even when you feel free of LS). Use the Dermovate to calm flare ups and once every two weeks to prevent them. At first I have used it twice a day for a week, then once a day for a week, then every other day. The trick is to use the smallest amount to cover the area very thinly. Remember that when LS is active is when it is doing its damage so do not be afraid to use the Dermovate.

They think LS attacks the insulin producing cells in the body and there is a link to diabetes too as well as thyroid problems. I wish we could get up some kind of advertising to make this problem more widely known so that people like us do not suffer for so long before getting treatment. I did too for a long time. I actually think I had it from being a young woman as I often tore after sexual intercourse.

Hi Horses,

Feeling like I'm getting to know more and more about this problem. Thanks for the name of your barrier cream. I'll give it a try. The funny thing I've just realised that my LS was diagnosed after I had a total hysterectomy 8 years ago, due to abnormal cells found in two smears and two Colonoscopies to remove pre-cancerous cells, I elected for a total so that I didn't have to worry about cancer. It never occurred to me that they may have been caused by the LS or that the hormone treatment they advised I take after the hysterectomy could possibly have made my LS erupt as it did. Do you think there is anyway we could make this problem more widely known so that women around the world would not have to suffer in ignorance. I wonder if there are any famous women out there with LS. I'm sure there must be. It would be great if one of them went public. Prostate cancer is publicised why not this?

Hi Chrissy

Thanks for replying it is nice to know I am not the only one suffering from this complaint. I have said to my closest friends and daughter ect about my irritation but they didn't know what the problem was just said I should go to the doctors just wish I had years ago to save all the suffering. I am going on holiday next week and will be nice to know hopefully I won't be itchy. Some people on here have mentioned they don't sleep very well because of it well I take 1 Piriton tablet the mild ones (30 in a pack) at bedtime if not had good nights sleep because of scratching and they certainly calm it down and I sleep through till the morning. They are not sleeping tablets just antihistamine but work well for me worth a try .

Hi girls,

It is strange how many links we have! I had a hysterectomy when I was 33. Doctor told me yesterday I have a little diabetes!I seem to be falling apart these days. Holiday girl, have a great holiday. I am going away this weekend to Australia. Hope I am flare-up free!! Take care all of you.

Hi all the kings horses

Hope you have a lovely holiday in Australia I am only going as far as Portugal but Hope we both enjoy it itchy free Carol

Hi Ladies

It is very comforting to know that I am not alone with this. I have now purchased some of the Yes Yes lubricants and they seem to be helping a lot. From what you have all posted I think I have been very lucky. I saw my doctor as soon as the symptoms of thrush did not go and she spotted LS straight away so I have only had it mildly (fingers Crossed) I have now seen the consultant again and she was very pleased as it is all under control and to see her in a six months. I too feel that this condition should be more widely known about as it could catch women earlier.

Again thanks to you all for being there and helping.

Jennie xxx

Hi to you all...have been following from Australia.

Have just recently had a diagnosis of LS. Now realize that I have had it for many, many years.

Always had a tube of Caneston on hand for itch or it was thought to be thrush.

Went to a different doctor when my own was away after a particularly bad flareup while I was on holiday...diagnosed immediately.

After reading some comments here I decided that I wanted a biopsy diagnosis...really had to push for a referral to a gyno...just wondering now if I should see a dermatologist?

It all seems to have settled down at the moment...I am using Novasone 1% twice a week and Vagifem once a week....although not sure about continuing the Vagifem as gyno said that it can cause thrush? Chrissy I noted that you mentioned 0.05% Dermovate..the one I had was 1%. Perhaps for long term use I should change to 0.05%? Had a strong med to clear that up a few weeks ago..cannot remember the name...only 3 tablets taken over 3 weeks...did the job.

For many years...over 30 having a pap smear was and is very painful as is intercourse...like many of you I too have a very understanding husband. Have recently had a chat with my mum who is 84 and I believe that she too has this condition and has suffered for many years. Now have to convince her to raise it with her GP..the same on who did not diagnose mine!

I am off to my doctor this afternoon with a few more questions..thanks to you all. Have not had thyroid checked...so will ask about this.

All The Kings Horses...welcome to Down Under..I hope that you have a wonderful time in this great country..and that it is itch free!!!! At least the mozzies should be under control at this time of the year...unless of course you will be up in the Northern Territory! If so...bring the Itch cream!

Hi Eureka,

Thank you, I am very excited about my first Australian trip! Funny your mentioning that your Mum probably has LS as I am convinced my old Dad (nearly 99) has LS and recently discovered that he is using a steroid cream. Sort of thing he would definitely not be discussing with his daughter! I believe my sister also is affected, but to a much lesser degree than myself. I have noticed that if I am on a course of penicillin or antibiotics, the LS immediately improves!!! I told this to my dermatologist last week!

Take care!

Hi all the kings horses

I believe my mum may have suffered as well as she was always asking me or home help to get her a tub of Sudacream and she was 82 when she died but as others have said its not something that was talked about but firmly believe it should be more on display in doctors waiting rooms etc and ladies magazines .

I agree that it should be spoken about more, but it is the most embarrassing disease and, in spite of the fact that we are obliged to be pristine at all times, I always feel it is dirty!! Does that make any sense?

Understand what you mean I remember sitting on a plane with a spare seat between my partner and myself when the hostess was looking for a seat but wouldn't move over because I would need to pop into the loo all the time to scratch down below but couldn't explain why just got black looks from her I felt really mean .