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Lichen Sclerosus & Incontenance & Dementia

Posted , 10 users are following.

carol64367
carol64367

My Mum has vascular dementia and has lost the capacity to control both bladder and bowels. This mean she has to wear incontenance pad 24/7. I am concerned as her Ls has obviously worsened due to sitting/lying in  urine and excrement. Obviously her pad is removed and she is cleaned up by my 87 year old dad, when he notices she has soiled.Mum is unable to even notice that she has soiled.At night she puts her hand down into her nappy and smears excrement on her nightie & the bed. I think she is doing this due to the LS itching and I think she is trying to scratch it. I wonder if the pads are irratating her and making the LS worse ? I wonder if anybody knows if there are a make of incontenance pads available in the UK that are o.k for LS sufferers? Also does anybody know if any research is being done /or has been done on LS and dementia sufferers? How best can we help them when they can't help themselves and still give them some dignity?

We will all get old one day and may well get dementia. It worries me that when we are unable to make rational decisions somebody may well be putting incontenance pads on us that make our LS conditions worse. I don't know what the answer is for my mum and any ideas /help would be most appreciated. My mums doctor was very reticent to even examine my mum as she said the dementia would make her too upset to be examined. It wasn't until the incontinace nurse examined mum while i was in her bedroom that we saw how sore mums LS was making her & I quickly said that's LS and obviously mum isn't putting on a steriod cream ( she's be unable to do this for herself now due to loss of mental capacity) and sitting in wee  or lying in it overnight with pads on is making it worse. that's when we got a doctors appointment and now at least mum has cream being put on twice a day ! I think there is a real need for a lot more advertising and media coverage of LS . So many people still don't know what it is and how painful it can be!

2 likes, 15 replies

15 Replies

  • rockin_R
    rockin_R carol64367

    Posted

    You're scaring the heck out of me because I was recently diagnosed with this and they wanted me to use cream twice today. I can't hardly reach where they want me to put it I think if I put it on the internet I'll be alright but I don't know.

    like where did this come from why is it on my body that's what my two questions are + 3 is for Real? I've never heard of it until recently

    I'm 53 and diagnosed at 51 years old. They did biopsies 4 of them. They told me you just scream and sent me home but never told me the importance of it. And I learned the importance of it later on and now I'm too heavy to comfortably reach it. I have a bad shoulder. Anyway what is the deal with this disease condition or what-have-you Carol 64367

    • carol64367
      carol64367 rockin_R

      Posted

      My mum has had this since her 20's and is now 86. Although it is said not to be hereditory - I have had it since my late 50's.I don't think the medical profession know for sure why we get it but it may be due to a breakdown in our immune system ,possibly. You can look up on line and on here to find out more and get helpful advice. My LS is mainly controlled , but I do find it gets worse when I am stressed.I use a steriod cream usually once before bed and I put on vaseline if i have the tiny sores that are painful or the white areas that can get cracked and painful. I also wash using "hydromol" from a big tub prescribed by my gynocologist. The important thing I find is to put a barrier cream on after I wash/shower in the morning and never ever use anything perfumed to clean myself in the lower regions as this definetly agrivates the LS. Your gynocologist should be able to prescribe these things or may know better ones. Your doctor may also be aware of LS. But sadly often it is mis diagnosed as thrush , as the symptoms can be similar. I think many people ( men can get it too ) have LS but may not be aware of it being LS. I myself thought it was a bad bout of Thrush and was seeing the doctors for over two years before being sent to a gynocogist who knew as soon as she saw it the it was LS - thank God for her !  I think it is important for me now to find out about how i can help my mum control her LS with the incontinance and Dementia - you never know what is around the corner & I may also get dementia as I age - not a great thought but at least medical research may have a few answers by then !

      Don't panic about your LS - mine doesn't bother me much at all unless I worry & at the moment I'm obvioulsy worried about my parents - but do always go to your doctor if you symptoms are bad and you can't control them with the creams.By all means follow some of the advice on here. But do check with your doctor. the more we go and speak to our doctors and let them see the sores and inflamed areas we get the more they will learn - just check with them at least once a year - that was the advice of my gynocologist  & she was brilliant.

  • joanne55511
    joanne55511 carol64367

    Posted

    Hi carol, I am so sorry to hear of your poor mum's predicament and obvious pain with LS. I don't know much about different types of incontinence pads as I am sure you will have tried all on the supermarket shelves. I am wondering if you did a thorough search on this on the Internet you may be able to find something more absorbant and less irritating for her. Also have you thought of using a barrier to prevent the urine making her so sore? I know people use vaseline and other similar ointments. Some say that a mild nappy rash cream would give a good barrier also. Maybe you could research this.. what a lovely caring daughter your mum has and I know I would do the same for mine.. wishing you all the best Carol and let us know how you get on - Jo
    • carol64367
      carol64367 joanne55511

      Posted

      When the incontinance nurse came to see mum and examined her I saw the LS and immediatly told her what it was. She had heard of it & I guess there may be many other elderly people out there who are incontinent and have this disease and maybe don't know about it - just find themselves sore and ichy ! She had no idea about the pads being an irratant in themselves but as some sanitary and panty pads are causing women on this site harm and being an irritant i imagine the same can be true of incontinance pads and pants. I did tell the nurse to put vaseline on mums LS which I had in my wash bag , as I always carry a little tin wherever I go. I also gave mum a tub of Hydromol ointment to use as a barrier but also my gynocologist said you can wash with this safely if you have LS. So I hope when I visit in a few days the LS is getting better. It is a worry for me as I know urine does make LS worse. There must be a lot of people out there with these symptom and any help and advice given here may help them too !

       

  • justine89448
    justine89448 carol64367

    Posted

    I feel for you. Your in a very difficult position, she does need the steroid cream and also a good barrier cream I use hydromol I get it in the uk. You can get it on prescription too. I think your Dad needs to be told how uncomfortable it is and that he will need to do a maintenance programme as well as the nurse who comes in. I also find when my Ls is in flare I also stuggle with my bladder and it sounds like she doesn't need any more problems in that area. Ls itch is worse at night too so I think your correct in your thinking. Her diet needs to be looked at sugar all sugar including fruit seems to be a big trigger. I don't know what to suggest about the pads apart from seeing if you can find natural ones. I hope you get some help soon. Some people find soda bicarbonate baths help and that may be some relief for her.
    • carol64367
      carol64367 justine89448

      Posted

      Thanks Justine , I'm afraid Mum can not get into the bath now and has a shower- even that takes a while. She is very frail and sometimes uncooperative with the dementia. I told the incontince nurse to use vaseline as my mum had some very sore areas and my gyny told me not to use the steriod cream if I had open sores or areas that were cracked - which mum did. So I also gave her my tub spare tube of hydromol ointment to wash with. You can also use this as a barrier cream straight out of the tube. Thanks for the advice about sugar. She does like to eat sweets alot and i will tell dad to stop these for a while to see if the LS improves.
  • Barking
    Barking carol64367

    Posted

    Oh Carol, my heart goes out to you. Dementia in itself is bad enough but combined with LS, how horrible for you to watch your mum in distress. My mum died in 1996 after 10 years of Alzheimer's and I am sure she also had LS when I recall various things. I have since been diagnosed with it for the past 3 years and I have already started writing a list of how to help me if I go down the same route. As for your poor mum, how about contacting Macmillan Nurses or Marie Curie as these days I don't think it has to be solely cancer related. I am in the UK and have been shocked by the lack of knowledge and research about this terrible affliction. Wherabouts do you live? I so hope you get some help and support from this great forum - thinking of you, best wishes x
    • carol64367
      carol64367 Barking

      Posted

      I live in Kent UK my mum is in North Somerset. Thanks for the advice about MacMillan & Marie Curie - they may well have some information that might help. Thanks x
  • claire12259
    claire12259 carol64367

    Posted

    Hi Carol,

    Mum mum also has dementia and incontinent so I understand your worries.  Are you in the UK? Natracare do incontinence pads. I used their STs when I still had periods and they were non-irritant - no chemicals etc. You can get them off the internet XXX

    • g30rg313
      g30rg313 claire12259

      Posted

      I've ordered myself some natracare products today to try on my next period. Hopefully this time around my period will not trigger a three week flare like I usually get if I use these chemical free sanitary products.
  • suedm
    suedm carol64367

    Posted

    Could you talk to her consultant who diagnosed LS, put the issues to him, even phone his/ her secretary on the clinic day.. Perhaps an oral steroid may help the interminable itching. It is not ideal for normal use long term because of the side effects but in your poor mother's case the side effects are less of a worry than the lack of topical treatment.

    i printed off the slides shown on Dr Goldsteins webinar...I screen shot the slides on my desk top and printed off a copy for my GP to help my surgery understand the issues of LS . I possibly would write formally to her medical consultant/ GP/ Gynae and state the issues enclosing the slides 

    faeces is very caustic and will make her situation so much worse

    my heart goes out to you and your father

    perhaps if the district nurse could advise you on controlling her bowel habit...like for the paralysed..  ie a suppository every other day and help her to the loo after breakfast may help to stop night incontinence. Look at her diet as been sugested She is possibly too sore at the moment for a catheter, and maybe she couldn't tolerate one in the long term but perhaps it could be considered short term

    does she have a bidet or similar. Some relief might be had sitting in coolish water

    take care and I hope you can find a way to help

    best of luck

    Sue

    • carol64367
      carol64367 suedm

      Posted

      I am seeing her Dr  later in the month and will reinforce the importance of hygiene re LS and bladder and bowel movements making being really important to control & quickly change pads etc., I have had someone on this site advise me that there is an incontinence pad make that might be OK for mum. I will buy some and get these to dad asap. Your advice about bowel movement regulation is helpful. However getting a suppostitory up her might be an issues with the dementia. dad has given her tablets but the aftermath of that was too demanding on him ! Unfortunetly there is no room for a bidet in her bathroom, but i will seriously think about getting one in my home. So thanks very much for your help .x
  • Limo
    Limo carol64367

    Posted

    I hate to say that this has already crossed my mind. I have had it for 20 years and I am almost 60. I don't know the answer but I am afraid it will be a problem for us all someday. I'm not seeing any kind of cure in my lifetime anyway. So sorry no answer just thoughts.
    • carol64367
      carol64367 Limo

      Posted

      Well hopefully we might be able to at least find some useful things to do - like getting a bidet fitted into our bathrooms if there is enough space. When I buy a new home I will certainly bear this in mind.Also finding an incontinence pad that doesn't irratate the LS would be a help to my mum & maybe us too in the future if we ar unfortunate enough to need them. We also need to alert the professionals to the issues associated with LS and incontinence - maybe some of them may already know the naswer. If any gynocologists look at this site they may already have answers - who knows. All info and discussion  is useful. We need to raise the awareness of LS.
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