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Hi Sue,

Please try and not worry yourself sick. When I was first diagnosed I became quite obsessed about checking myself every day. I would research the condition for hours on end, and its all I could think about. I've stopped doing that and only check myself a couple of times a month now and its helped my mindset greatly. You're going to have flare-ups at points throughout your life, and unfortunately its a condition that will progress however, there's plenty of amazing advice on here about how to manage the symptoms. As far as I'm aware, loss of pigment isn't a cause for concern. Its just part and parcel of the LS for lots of us. I've experienced lots of that over the past year along with shrinkage and fusion but i'm ok with that so long as I can control the itching and burning which I experience during a flare-up. At my last routine appointment at my local LS clinic, I was told that unless I had an open sore or cut that wasn't healing then there is absolutely no cause for concern. Its extremely easy to let LS have a huge negative impact on your wellbeing however, I say just don't let it. It ain't going anywhere. There are thousands of us in the same boat living with this but we're all in it together and, dare I say it....there are worst things in life. If you need to go back to using clob for a while until things slow down and your flare-up passes then so be it. Thats what its prescribed for. Please don't let it rule your life. LS doesn't define you. Its just a crappy condition we have to manage long term like many other hundreds of thousands of people living on this planet who have conditions they would rather not have. Please don't think i'm in any way dismissing your genuine worry. I get totally get it, and i've been there myself before I got my head around it, but just don't worry yourself sick if theres some changes that occur over the years. Its just the nature of the beast, and its normal.

Hi Sue

I think we all over-worry from time to time, I know I did when GP told me I had a red 'scarred' patch that wasn't there the previous time she checked. 2 ladies on here reassured me it was probably another development of LS and now, having seen a dermatologist who confirmed this, I am calmer. I think they inform you of ANYTHING that may look different just so you know to up the steroids for a while.

I also think we have to pat ourselves on the back for being diligent and for attending regular check-ups (it's good you are in the system of 6 monthly checks), because its the best way of keeping on top of this horrible disease. Ignore it at your peril! The more we attend to our vulvas, the better the outcome! I am sure if the clinic had felt there was a chance of VIN, they would have referred you and white patches are a symptom of LS, nothing more. Best wishes.

Please try not to worry, it doesn't sound too bad to me.Use the Clob as instructed then consider asking for Eumovate a weaker steroid. I use that daily and Clob once a week and find that keeps things largely under control. I had a Vin scare but all was well that was an ulcer that didn't heal. I was told that lumps and above the surface sores are more suspicious than pale or red areas which are smooth. I now only check myself weekly unless I am particularly sore, that way I have stopped obsessing and find that I can be more relaxed. LS won't go away but we can learn to live with it. It has taken me 4 years + to get to this point. Hope that helps.

I'm with Susan2018 on this one. It seems everyone has some issue or other. Ours is just a rather rare one, or one that there is little information on. After diagnosis I searched for info, but it really is limited and the only treatment is steroids. There are other things that might help soothe, but nothing as far as the medical establishment is concerned cures it. I think of it like psoriasis. That isn't curable either. Both are considered autoimmune.

I must admit I rarely do a visual check as it was so hard to see anything to begin with. The gyn showed me photos of apparently very advanced cases. Maybe that's why some doctors don't recognize LS earlier on. I was just about speechless and hurried home to witness the damage. All I saw for sure was a very faint white line between the buttocks (gone now) and a pale labial edge.

We need to put it in perspective. I think what causes panic are doctors who appear dismissive causing women to fear they have no one helping them... which is understandable.

Is it common in the UK to be seen just once a year? I'm on a 6 month schedule now (US), but I can make an appointment with a gyn anytime I want. Have to pay the co-pay, but if you're concerned you can see a doc for which I am grateful.

It's the young women who get this I really sympathize with. A cruel twist of fate re sexual relations, but again, not life threatening. We have to remind ourselves we are at least alive. Having lost a sister to breast cancer is a reminder for me.

I agree with Susan . don't worry ! only makes it worse . Have you heard of borax soaks . ive just started . if you look for lichen screlosus and borax on facebook there is a closed group that will give you lots of advice on that and natural remedies . its interesting and very helpful .

Hi all,

I am not sure if I have LS but I seem to have some symptoms of it. I am afraid to ask Dr. as she probably will dismiss it. I have been twice in the past year about irritation in the vaginal area and the second time both in the vaginal and anal area. She gave me some steroid cream with an antifungal in it in case it was yeast and did a swab for yeast and bacteria both times of which results came back negative. The steriod cream seems to help a bit but also irritates- not really sure. This burning/irritation which is mild but noticable I have had about 2-3 times in the past few years. Not so much itchy but it has been a few times. Right now I am at the end of my period and noticing irritation in the anal area. I have a skin tag there and it looks a bit red. Not sure if it is hemorrhoid since it feels more painful after bowel movement or after sitting too long or walking a lot. My vaginal symptoms seem to go away when I am on my period. When I do have irritation and check down there, it looks red. One side of inner labia looks a bit pale in one spot but it isn't any more sore then other areas. My Dr. says it could be hormone related since it seems to be cyclic. I was also diagnosed with minor prolapse by Gynecologist. Any suggestions welcome please. Not sure what to do next...

THANK YOU all for your lovely replies, I cant thank you enough. I dont know how long the pale colour will take to go back to pink if indeed it will. Its just so odd how its all changed there. Like all the edges have gone and just melted away. Im thankful that the GUM clinic dr is willing to see me NHS gynaecology dont check in my town on you every year anymore. The lady at the GUM was glad I showed her as I couldnt really face it but im glad I did now or else I wouldnt of known to put more Clob on. Its strange why the paleness is so high up. You are right with your advice and if it wasnt for reading threads would feel very frightened. THANK YOU again x

Glad that you found our replies helpful. The Paleness does improve, but

the fusing I have learned to live with. I have reached a point where I don't read all the posts on here any more, it was just feeding my obsession. Yours just seemed to need my input. One of the female GPs at my practice sees me once a year for a check on the LS I find that helpful. Is there someone at your practice who deals with Womens issues?

Good luck.

I have a question about LS- can you explain what is meant by the "fusing". I have some symptoms of LS but am not sure if I have it or what is meant by the fusing?

Thanks,

I thought I would update on the Dermovate/Clob. Yesterday I checked and I thought the skin had a tinge of pink but thought it was the light as I was away from home, so I checked and today the skin is pink and has lost its shine and looks so much healthier. To be honest I cant believe the change. Im also a bit angry as if I didnt go for my checks at the clinic and was just left by the NHS hospital in town I wouldnt know to do this and who knows how bad I would get. I feel less sore as well. I cant have a bath anymore though I only have a shower cubicle at home no bath and when I visit family I used to have a bath as a treat but stopped as the last bath made me so sore, so I do miss that x