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LS Perhaps we could compile a Fact Sheet

Posted , 9 users are following.

suedm
suedm

I was discussing this forum with my 40+ son yesterday He suggested that if we could compile a fact sheet of what we KNOW not  what we THINK; offer it to our gynae / derm consultants for their input then have a website with an international bias, we could perhaps construct a questionaire together with the medics relating to common issues: treatments / associated conditions/ lifestyle issues/ stress factors / age / ethinicity/ diet and the usual smoking drinking and sexual issues/ family history

A separate part of the paper could be for suggestions / alternative therapies / what works for me /

When this time limited self referral "study" was complete PhD students could be offered aspects to study for their final degrees

Thoughts from you all??

(Interestingly my son has recently diagnosed Gilberts syndrome - another auto immune condition his father has MS and he brother asthma!)

8 likes, 108 replies

108 Replies

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  • Chrisy
    Chrisy suedm

    Posted

    Just before I start I want to say that this is brilliant.  I can't wait for this to come to fruition. 

    I wanted to say in response to some comments, men do suffer from Ls and have problems like inability to pull back their foreskins.  They can also have problems urinating and be too sore to have intercourse.  It can also affect their anus.

    There is research being done by some doctors and I was lucky to be under a male doctor for a short while who was very interested and was involved in research that was being done in the uk.  He has unfortunately left the hospital I attend but I believe that he is still involved in researching this subject, so I keep my fingers crossed that he comes up trumps.

    I also feel that as Ls causes cancer in a very few we must include this factor in our survey with the obvious question of : Have you had any problems with cancer/cancer related conditions.

    I hope this is of interest.

    • Morrell1951
      Morrell1951 Chrisy

      Posted

      Chrisy, I certainly agree men should be covered. And cancer – good to know if anyone, say someone fell through the cracks and turned up with both LS and SCC.
    • suedm
      suedm Chrisy

      Posted

      I am sure that the moderator will have written to all on this site - Alan- is going to take our discussion to his directors and  there may well be some help in collating the information /collecting data. He has directed us to another site 

      He says:-Other things I think we could do is host a standard form/survey that could be linked to and used anonymously from the forums but I will let you know what the director/devs say.

      Something the PMR forum users did was ask for a pinned discussion where users could tell their stories rather than repeating it several times. See https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708 Contributor's Brief Histories.

    • Morrell1951
      Morrell1951 marey

      Posted

      Yes. It's why I'm not refusing Clobetasol. Not that it directly prevents SCC, but it reduced the number of lesions. A constant open wound is an invitation to cancer. I used to have a big white area with a deep tear in my perineum half the time, bleeding around my anus, horrid deep boils in the crooks of my groin, raw splitting flesh in the folds of my labia. Most of that is gone now.
  • Emis_Moderator
    Emis_Moderator suedm

    Posted

    Hello everyone,

    Sorry I haven't replied sooner but I was on leave last week. If you wish to bring things like this to our attention please just use the message facility or use the "Report" link and use the "Other" option to ask a question.

    I have emailed the link to this discussion to the site director/developers to ask if there is anything we can advise on or help with. I know we can get all of the LS discussions extracted to a spreadsheet if this would help although it would be huge smile.

    Other things I think we could do is host a standard form/survey that could be linked to and used anonymously from the forums but I will let you know what the director/devs say.

    Something the PMR forum users did was ask for a pinned discussion where users could tell their stories rather than repeating it several times. See https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708 Contributor's Brief Histories.

    Regards,

    Alan

    • suedm
      suedm Emis_Moderator

      Posted

      Thank you Alan - That is so helpful- I havent looked to see what the others have said as I have been away- but I am sure there will be a lot of relief that we can find a way forward

      Keep watching us - we need down to earth advice!!! SueDM

    • Vibrant_Health
      Vibrant_Health Emis_Moderator

      Posted

      Thanks so much, Alan.  It will be great if we can have both i.e. the spreadsheet for easy and more factual reference PLUS an active forum to address specific issues/concerns.  Obviously, all the help we can get will be so appreciated because this condition, so far, is suffered by many with no light at the end of the tunnel.  With your help, perhaps we could get closer to finding solutions...
  • marey
    marey suedm

    Posted

    Hi SueDM.

    You were raising some interesting points but in another discussion which referred to here - I think - Is that right?

    I'd like to respond in this section if that's ok so we don't hi-jack someone else's thread!

    Think you has some objections to my 'theories'...they're not hard and fast ...more of a starting point in response to your appeal for succintness.

    best wishes

    marey x

     

  • nakedphil
    nakedphil suedm

    Posted

    I think it's about 1/5th in men. I've had 2 flare ups. GP (male) not a clue ended up showing pictures for diagnoses and he prescribed wrong ointment. Urologist (male) not a clue, further pursued and my diagnosis was accepted at hospital. Decided to ask for Clobetasol from GP by telephone, queried why by GP (female), explained and told fine just collect prescription, now reasonably clear.

    Causes loss of feeling / deadening on glans

    • Morrell1951
      Morrell1951 nakedphil

      Posted

      Welcome, Phil! I didn't know it was as high as 20% of cases. Is this deadening from fusing? That's what I have, well, the small-scale female version.
    • nakedphil
      nakedphil Morrell1951

      Posted

      on the glans shows as white patches, if allowed to dry out looks like scar tissue and about as much feeling. On the foreskin looks similar but has many small cracks when expanded and bleeds and very sore. Nocturnal erections leaves blood on the bedsheets.

      The only redeeming feature is it seems easier to see on male anatomy but very few 'proffesionals' recognise it for what it is. First time many years ago I seem to have been lucky with the GP at that time (different to recently)

       

    • nakedphil
      nakedphil Morrell1951

      Posted

      Most references say 1 in 10 but I have seen 1 in 5 quoted but of course cannot now find it!
    • Vibrant_Health
      Vibrant_Health nakedphil

      Posted

      Is there any satisfactory explanation why men get this condition, I wonder.  With women, the common cause is imbalance of hormones, aging (not necessarily obviously) and auto-immune disorder.  Also, can it be transmitted from women with LS to men (although I highly doubt it, it will be good to know).   It certainly is unpleasant but with our sharing of information (this wonderful group of people here), we shall find a solution soon!!
    • suedm
      suedm nakedphil

      Posted

      Hi  Phil - clothed or not! I am sorry not to have responded sooner - i have been gallavanting. Many of we females have found it essential to keep out undercarriages moisturised at all times - perhaps that would be  the case for males with LS tooo. I imagine that scrupulous cleanliness is essential and if the foreskin is stretched that could cause splitting and bleeding. The chemist sell large tubs of aqueous ointments that are inexpensive and very good to wash with - but are a tad greasy, Diprobase is a Good prescribed option - but there are others After peeing wash the area with the aqueous cream or similar and leave some on the glans and the foreskin and a small amount on the shaft - hence the need to wash in all those important little places VERY carefully, to remove and caking creams and oitment

      Do go along to a dermatologist - if you are in the UK ask for a second opinion as your urologist was clueless. Try and find someone on the net you think would be a suitable consultant and tell you GP

      I imagine the same advice would apply to you as to us  re wearing loose undergarments, and i suppose heads might turn if you wore skirts to work, but  leave the tight jeans in the drawer!!

      Good luck with your quest to find a sensible medic

       

    • nakedphil
      nakedphil suedm

      Posted

      I just asked for Clobetasol see post, problem solved. Interestingly I found keeping the area dry was useful ie. the opposite of convention.

      Seems to be stress related as well as auto-immune.

    • suedm
      suedm nakedphil

      Posted

      That is good - Did you see / hear the webinar from Dr G- It is well worth spending the hour listening to him - even tho he centres on female anatomy for illustration - well he would he is a gynaecololgist after all - however the underlying aetiology is expalained very well and the way to use the clobetasol

      Where in the world are you? It is interesting to see where we LS ers are from

    • suedm
      suedm nakedphil

      Posted

      ps Moisturising  only means keeping the skin supple - not wet. By using moisturisers the skin is less likely to crack / tear
    • Morrell1951
      Morrell1951 suedm

      Posted

      Ditto, Sue. Oily creams actually repel water. This is why some use a barrier cream when peeing, to keep the urine away from the skin.
    • suedm
      suedm Morrell1951

      Posted

      Male anatomy does mean that care to clean into those important little crevices is VERY important and as DrG wants a minute and a  half of massaging the Clob into the affected areas  I suppose the moisturising will increase the time factor - but well worth the effort to stop skin from cracking, bleeding and scarring!
    • Morrell1951
      Morrell1951 suedm

      Posted

      I'd read that it was better to wait an hour between applying clobetasol and other moisturizers and oils, but I was doing it right before bed, so all at once. Now that I'm taking a bath earlier in the evening, I think putting the oil on later will add even more to the efficacy. I'm optimistic. My twice a week will be Monday and Thursday (easier to remember than was it three days ago??).
    • suedm
      suedm Morrell1951

      Posted

      Thank you - I too - always in a hurry - slapped it all on at once, but first think in the morning. But then I am slap happy with face creams - never know which order sun cream /moisturiser /insect repellant/ tonics/ sprays.... Its all to much for me. Your way sound so much simpler!
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