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Lichen Sclerosus

Discussion in 'Other Health Conditions and Diabetes' started by sleepster, Aug 13, 2018.

  1. sleepster

    sleepster Type 1 · Well-Known Member

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    Hello,
    I was wondering if anyone here has lichen sclerosus?
    I am back at the doctors next week to hopefully get a diagnosis but my GP suspects I have LS and at the moment I fear she is correct.
    I am feeling quite down about it so no horror stories please! :)
     
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  2. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    Hi, I have read about it and if it is in the place that is most common on the body, I am sending you a virtual hug. I have Oral Lichen Planus, that is on the left side of my mouth and tongue.
    Please let us know how you get on at your doctor's, take care x
     
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  3. kev-w

    kev-w Type 1 · Well-Known Member

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    My little girl was diagnosed with this aged 3 1/2, the authorities gave her back to us after 11 days in foster care with a tub of steroid cream, I took the following complaint to the government and medical ombudsman with no success.

    Oilatum (sp) a paraffin based emollient can be prescribed to put in your bath water and a couple of steroid creams too so it's treatable, diagnosis in the UK isn't instant, in the states a 'punch biopsy' is performed, it can appear in two ways, 'LS & atypical LS, auto-immune fault, cause unknown but in children can right itself during puberty.
     
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  4. sleepster

    sleepster Type 1 · Well-Known Member

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    Thank you for the replies, I really appreciate you taking time to make me feel a bit better! Although I kind of feel like it's not something I should be embarrassed about, it's not really something I want to shout about either!

    Thanks @Contralto, I have some steroid cream to use, I haven't heard of a low oxolate diet but will have a search and see what I can find out, thanks for mentioning it :)

    Thank you @Robinredbreast, I don't know much about lichen planus but can't imagine it's very nice having it inside your mouth :(
    Fortunately my symptoms haven't been too bad, I think I'm very lucky my GP was able to identify that it might be LS, from what I have read a lot of people have trouble getting a diagnosis.

    Thanks @kev-w, fingers crossed your little girl gets better when puberty comes around, it's rubbish that you had no luck with your complaint though.
    I have read it's most common in children and (I think) women over 50, I'm 30 so lucky me eh? I do have steroid cream which is working very well, but will ask my GP about the oilatum. Thanks again :)
     
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  5. sleepster

    sleepster Type 1 · Well-Known Member

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  6. Uniongirl

    Uniongirl Type 2 · Newbie

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    I have this do not find diet has any effect but definately know worse at time of the month etc now past all that but situation is no sex life now as hurts to much have a colopscopy every 6 months and have had biopsies to make sure any lumps not cancerous. I have steroid cream to be used sparingly when situation is bad and Junior Oilatum and Dermol 500. The problem is if I try a diet for one thing it affects the other health issue. Not sure this diet made any difference to me.
     
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  7. sleepster

    sleepster Type 1 · Well-Known Member

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    I think I will mention the diet to my GP and see what she says, whether it is worth me trying or not. Thanks for your insight @Uniongirl :)
     
  8. sleepster

    sleepster Type 1 · Well-Known Member

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    Hello, just a little update, I went to see my GP for a follow up after using steroid cream for a month, she is now going to refer me to either a dermatologist or a gynaecologist (she is going to find out which is more appropriate) to get a diagnosis but I'm not sure how long that will take, in the mean time she said to just use the steroid cream if needed and I'm going to try and not think about it!
     
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  9. DeeAitch

    DeeAitch Type 2 · Active Member

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    Hi I've had LS for years sadly, diagnosed about 6 years ago but think in retrospect I'd had the onset for about 10 years before that putting physical issues down to dryness etc creams keep it under control more or less but After 2 Fentons procedures and with severe atrophy in that area I've more or less given up on the bedroom pleasures
    Sorry sounds grim doesn't it, but I think I was diagnosed too late, hopefully you've caught yours early
    So advice from me
    Don't be fobbed off
    Push for a diagnosis
    Use the creams
    Hydromol is your friend as a barrier cream, moisturiser, shower 'gel'
    Try dilators if appropriate (I had to buy my own & they helped for a while but should have had them sooner)
    Wear cotton underwear
    Be kind to yourself
    Make sure you're seen regularly for check ups with your dermatologist as you don't always automatically get your recommended appointments
    Good luck!
     
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  10. sleepster

    sleepster Type 1 · Well-Known Member

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    @DeeAitch I'm so sorry I haven't replied before now, but thank you for your advice, it's very helpful.
    I'm still waiting for an appointment with a dermatologist, hopefully it won't be too much longer.
    Thanks again :)
     
  11. dancer

    dancer Type 1 · Well-Known Member

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    @sleepster I was misdiagnosed with it and was given information sheets which listed many do's and don'ts. One of the don'ts was not to wear coloured underwear due to the dyes. One of the do's was to keep Aqueous Cream in the fridge and use it to moisturise and/or soothe.
     
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  12. sleepster

    sleepster Type 1 · Well-Known Member

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    @dancer oh dear, I think I might have to learn how to make underwear! I find it difficult enough finding cotton undies, never mind ones that aren't coloured! :eek: I'm being optimistic that I don't have it, my symptoms are minimal but not sure if that is typical and they will get worse as time goes on. Anyway thank you for sharing, I will definitely try putting some aqueous cream in the fridge!
     
  13. archersuz

    archersuz Type 2 · Well-Known Member

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    I buy 100% white undies in M&Co. Hope that helps.
     
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  14. JenniferW

    JenniferW Type 2 · Well-Known Member

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    I have lichen sclerosus and one of the really annoying things is that no-one's heard of it! So before you can have an intelligent conversation about it you find yourself having to describe things that make you wish you'd just not referred to it.

    I'm now at the stage of an annual check-up, which is at the gynae clinic of my local hospital. I always have a tube of Eumovate, but it now lasts a fair time. I switched to just using E45 at one point when I was coming up to a biopsy, but when the results came back OK from that, I was told to go back to Eumovate, using it as and when it was needed.

    I assume someone's told you not to use soap in the affected area?

    And if it helps - all my underwear's black! And no-one's ever suggested I change it, so I haven't.
     
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  15. sleepster

    sleepster Type 1 · Well-Known Member

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    I still haven't seen anyone except my GP, so 99% of the information I have got is either from here or other websites I have come across from google :( All my GP said was to keep an eye out for changes as there is the increased risk of cancer. I did read early on not to use soap, but thank you for confirming.
    I have got 2 pairs of white knickers now, to be honest though, I don't see how cotton that has been bleached for white underwear is any different to cotton that has been dyed other colours. Surely bleach would be just as bad as dye?!
     
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  16. JenniferW

    JenniferW Type 2 · Well-Known Member

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    I agree about the knickers!

    I was sent to see a consultant right at the start because my GP obviously wasn't 100% sure this was what I'd got - there's similarity with vitiligo. So although my prescription for Eumovate comes from my GP, all my check-ups are at the specialist clinic. When I first saw a specialist it was in a urology clinic, but then I was moved sideways to a gynae clinic. For several years I saw a consultant who was good about making me relax about it, but there's been staff changeovers and last time, I'd say the consultant I saw was the grumpiest doctor I've ever seen in my life for anything! But they do take you seriously if you report any changes because we are at a slightly higher risk of developing vulvar cancer. Like you, though, I've learnt most of what I know from searches online.
     
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  17. Indy51

    Indy51 Type 2 · Expert

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    Just had the thought that any of the SGLT2 inhibitors could be a disaster for anyone with this condition?
     
  18. Bevhs

    Bevhs Type 1 · Member

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    Hi I don’t know if my other health problems are connected with Type 1 but I find it all very frustrating.
    I have sleep apnoea and use a Cpap machine at night but I still find that I’m terribly tired despite the therapy. I also have gastric problems with a sliding hernia which admittedly a lot of people suffer from. Then latterly I’ve had breast cancer. So what it means is that I’m constantly tired, which hypos in particular make me even more exhausted. When laying down I have a persistent cough which I take Omeprazole and gavisgon for.
    And as I say post mastectomy I currently have constant irritation from the wound site which should improve with time.
    Through it all I think a lack of energy is the most debilitating thing! I need so much sleep to get through the day! Help!
     
  19. SusieBrown65

    SusieBrown65 · Member

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    I was having a lot of pain making intercourse unbearable, my doctor prescribed steroid cream which didn’t seem to help. She sent me to see a gynaecologist lady doctor who diagnosed Lichen Sclerosis and gave me a different steroid cream and vaginal gel. This was a couple of years ago and I still suffer. I have the 1% steroid cream on repeat and I’m quite nervous about constantly using it. At the time of my examination the doctor told me there was no sign of cancer but I feel I ought to have follow up appts, would you agree. I hate keep going back about this and just try to get on with life but it’s quite painful at times
     
  20. JenniferW

    JenniferW Type 2 · Well-Known Member

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    My understanding is that we should all be getting an annual check by a specialist because we're at an increased risk of developing vulval cancer. I go to a clinic at my local hospital to see a consultant gynaecologist. But my medication - Eumovate cream - comes via my GP, who just writes a repeat prescription when I need it. One doctor I saw at the hospital also suggested using E45 cream, which I do sometimes, and it can be enough.

    For using the cream, were you told once a day for a month, alternative days for a month, then twice weekly for a month? When mine's been at its worst, that's made a great improvement, and then I've only used the cream occasionally.

    My impression is that once we have the condition, it's going to be a lifelong condition, so in that context, your worries need addressing, including how it affects having sex and what this means in relationships. But you'll have to raise that with your GP and the consultant - I was only asked about sex at the first ever consultant appointment! I think you're entitled to have a referral on to a specialist in psychosexual conditions, but if your GPs are like mine, you'll have to ask and possibly ask and ask again for help.
     
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