living with LS is hard

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[color=darkred:9c66c7c7e1][/color:9c66c7c7e1] :cry: I have been living with LS for 5 years now and cannot seem to get it under control. GP seems a bit blase about it and doesnt seem to put my mind at ease at all. I have another app. with her soon and hope to ask a few more questions. LS seems to affect my anal area the most and at present am very sore and swollen. I am very weepy and wish someone could reassure me.

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  • Posted

    i wish i could reassure you, but i to have suffered for 2 years with LS with no sympathy from the doctor at the hospital, in fact he does'nt know much about the condition. the only info i get about LS is from this site which more often than not im in tears reading everyones experiences about it, im very weepy about it also. at the moment im using betnovate which im using every now and again when i get really itchy, as with everyones advise is try to stay stress free (easier said than done when it gets bad.) im only 37, i cant imagine having this for the rest of my life.
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  • Posted

    I am sorry to hear that you both are feeling so down.

    I was diagnosed in November last year. At the moment I am due to stop using the steroid ointment after an initial 3 month treatment. I am starting to feel more comfortable, although my inner labia are disappearing rapidly. I wash and moisturise this area with aqueaous cream. I sometimes use E45 cream also. The constant moisturising seems to be the key comfort factor for me. Also I have stopped wearing my (tight!) jeans so much and wear skirts more often, along with cotton underwear. When having sexual intercourse I use [b:d3e0cc519a][u:d3e0cc519a]absolutely loads [/u:d3e0cc519a][/b:d3e0cc519a]of lubricant and this has prevented the pain and splitting of the skin.

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  • Posted

    I AM SORRY TO HEAR YOU ARE FEELING SO DOWN.I TOO AM GOING THROUGH PAIN AND TEARS AS I AM SUFFERING FROM LS. I WAS DIAGNOSED LAST YEAR, I AM CURRENTLY USING DERMOVATE AND TRIMOVATE.HAD A FEW GOOD MONTHS,MIGHT HAVE KNOWN IT WOULDNT LAST.I SUFFERD FOR NEARLY FIVE YEARS BEFORE BEING DIAGNOSED.I AM CURRENTLY USING AQUEOUS CREAM TO SOOTH THE BURNING.
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  • Posted

    I get more info from this site than anywhere else.

    I go through phases of being really positive about it (when the Dermovate is working) and phases of being weepy (when it isn't). Have suffered for a few years, only diagnosed a few months ago, so perhaps should give it more of a chance.

    I find that liberal use of E45 cream or aloe gel helpful. I use Anusol on my anus, which also helps.

    GP knows little and gynaecologist at hospital not much more. I may start to investigate other therapies soon. Fed up of not being able to have sex with my beloved, patient, understanding husband!

    It's comforting to know that we are not alone and can share our experiences.

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  • Posted

    sad I was diagnosed with LS about two years ago.I have days when it's really bad and I can't sit or walk for the stinging and burning.

    I go to the hospital every 6 months for a check up but I always feel like a freek when they all gather around to take a look.

    When I went for one of the appointments there was a student there ,so I let her take a peek as I thought they need to learn about it.

    But as I got up I saw her face ,she looked as if she felt sick and then sat there for the rest of the time looking at me with a look of discust on her face as if she had trod in dog mess.

    I've now got a phobia everytime I go to the hospital and hate the students being there.

    I use Dermovate cream but only when it's really bad as I'm afraid of the skin thinning and getting more problems.

    It seems to be getting worse this last 6 months and it's sealing up fast.I wished they'd spend more money and get more information for us ,so that we are offered more creams ect to get rid of it.

    I'd never heard of LS until I got it and it makes you feel so down some days when it's really bad because you just can't see a way out of it.

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  • Posted

    I'm 19 and was diagnosed with LS 6 months ago. I found it sooo hard at first because i'm only young and I can't imagine not being able to have a normal sex life/have children.

    However, I'm coming to terms with it now as I just think, there's nothing I can do about it and so far my sex life is still normal and it's not really affecting my life too much. I think we just need to say to ourselves, it's not the end of the world, it's hard but we can't let this rule our lives. I try to be positive because I think to myself \"there are far worse conditions i could have.\" My best friend is very ill in hospital at the moment and unable to walk or talk and I think that has put things in perspective for me.

    I hope you all find ways to cope with this horrible condition too and try not to let it get to you too much.

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  • Posted

    Hi i have had Ls for many years, diagnosed for about 6 years. This is how i managed to get mine under control - it may help you. initially used dermovate - my gyno also gave me an anethestic cream to numb the soreness before using cream. very cool bath with a little bio oil in - never use any soap or bubble bath. try to use a barrier cream during the day a very thin layer of moisuriser or aquaeous cream. after any sex rinse with a lukewarm water. pat dry. never used any talc. use only white toilet roll. a cool fan in the bedroom to help for bad burning days. gloves in bed stop u scratching while asleep. always rinse and pat if u can after the loo. cotton knickers - no knickers when indoors. no tights. these are very simple things to alter - i do sometimes have bubbles in the bath as a treat - but i always put on a barrier cream first. this has helped me - i still get flare - ups but not as many. does any one get bad flare up after a migraine??
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  • Posted

    Hi there, I have been reading your experiences because I am in the midst of yet another flare up and needed to find some consolidation. I was diagnosed with LS when i was 5 years old. I am now 26. I suppose I am sort of lucky because I cant remember not having it. I have always known chronic itching, pain and splitting skin. I was referred to a Dermotologist at my hospital, had a skin biopsy to diagnose and was tried on Trimovate cream which was too strong and caused terrible pain-obviously i was only a young child at this point so my poor Mum had to become an expert! Eventually I was put on Dermovate which I am still using (i like the cream more than the oitment-more soothing). When i was younger it didnt use to cause me as much discomfort as it does in my twenties.

    I use Aqueous cream to wash with and after using the loo, and i find Savlon helpful when i am torn or cut as it prevents the onset of thrush and other nasties. Sex is painful but vaseline or other lubes are helpful-and yes, lots of it! i find i can only have sex once, then wait about a week til im healed up -only for it to tear all over again. white cotton underwear and skirts and generally all things airy are good to wear. Love the idea of wearing gloves at night, as i wake up countless times scratching myself til i bleed. I find the symptoms actually get worse around my period-does any one else find this? Also if i have a cold or feel unwell generally. I have seen a gyno and been put forward for 2 operations-one labia seperation and more recently a widening of the vaginal opening. i havent actually plucked up the courage to go ahead with these little ops and have cancelled them. Has anyone else had either of these procedures done? i am not convinced it will help, but maybe cause more issues. Any thoughts would be much appreciated. thanks so much. sad

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  • Posted

    Just to say don't know if you read my post about Tacrolimus ointment (15 Oct) - but it REALLY has helped my symptoms, completely removed itching, no more splitting and tearing. Not as instant as Dermovate etc and I will probably be on it for life, but really like a miracle. Will never be back to normal but this is SO much better.
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