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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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  • ChrissyC
    ChrissyC suedm

    Posted

    I've been following this discussion with interest. A while ago a few British people on here started comparing facts about ourselves, not in any organised data based way but just chatting. We also wondered how to widen the data group and how to get anything interesting picked up by medics and researchers. As we all know no 2 peoples LS conditions seem to be the same but there are crossovers. It does seem to me though that there are 2 groups so distinct as to warrant separate questionnaires. I mean those that develop the condition later in life typically during and post menopause and those where the condition had been lifelong from children possibly birth. Anyhow the group I was chatting with were the first type, all afflicted suddenly late in life and we realised that we all had the menopause in common and started to compare other things. We typically had auto immune disorders such as thyroid problems. We compared age, weight, lifestyle and diet and found we were all of a type, overweight etc. We compared any heredity of the condition and although there was a mixed bag here clearly it did seem to run in some families, some women finding that their old mothers had suffered for years and never even thought to seek help. Interestingly we did find that we all had suffered from anxiety at some time or other and had taken Citalopram to help. That caused us to compare any other medications we were on and any other medical conditions we shared. Several people had irritable bowel or similar conditions. I don't offer any of this as data, we were just a few people. I just thought it might add something to your thought processes for compiling a questionnaire. I really do think the main 2 types of sufferer are important though.
    • suedm
      suedm ChrissyC

      Posted

      I think you have a sensible thought Chrissy, I was a late onset and can almost pinpoint the reasons for acquiring the condition - as i could with my asthma.

      I think it could be worthwile  for us to be systematic in the data collection then offer it to our condultants - and or our local university for PhD students to consider for their finals- IF there isnt pne amongst us already

      Can you remember where the threads are? It may be of help to use that data too

    • ChrissyC
      ChrissyC suedm

      Posted

      It's on 'Atrophy in Lichen Sclerosis', starts roughly part way down page 2. Its a bit tedious to read through 'cos as I say we were just chatting and other people kept adding in. A lady called Margaret289 was the best person in pushing the idea of comparison but she's not been on for months. Most people at the beginning of that discussion are late onset and its only recently that I've had my attention drawn to the poor souls who've had it life long. They seem 2 rather different things to me even with obvious similar symptoms.
  • ChrissyC
    ChrissyC suedm

    Posted

    I see Margaret289 has been on other discussions that you have been on Sue in the last few days so you should be able to find her. From the way she was talking before I feel she may be interested in this discussion
  • Morrell1951
    Morrell1951 suedm

    Posted

    That's really interesting. I'm a lifer and I haven't been identifyng with a lot of these related aspects. My thing is how my LS affected my whole married life.
  • Morrell1951
    Morrell1951 suedm

    Posted

    So we could set up two threads: Early-onset LS and post-menopausal LS?
    • suedm
      suedm Morrell1951

      Posted

      Hi Morrell - "2 threads" I dont think that would be necessary if we get the initial thinking clear

      I have had a quick play on a spread sheet with your data as headings

      i have been thinking as i have been driving around today

      We could just have the headings and indicate the numbers of those who have that particular issue

      most could be a simple yes no response

      For example "early onset? yes/no or Age at onset or Date of onset?

      length of time with symptoms? In your case age of onset would be 0 years or at  birth; I would be 62 post menopausal That would demonstrate clearly lifers and late starters.

      Celibate- reason? could answer  no / yes:-  Single / pain / tearing / flare up/ fear etc

      Does that make sense?

      issues arising could cover sexual / social /emotional/financial-etc

       

    • Morrell1951
      Morrell1951 suedm

      Posted

      This is sounding nice and simple. We don't want it onerous.
  • Morrell1951
    Morrell1951 suedm

    Posted

    Chrissy, you're too kind. Anyway, I agree that we shouldn't leap into making two streams. It's not really divided cleanly that way. Young Mila of out 'Young and Scared' thread has just been diagnosed with Hashimoto's and she may be Celaic. I'm certainly getting the impression that the thyroid gland has powers and vulnerabilities that are still a big mystery. I came across its suspected relationship with psychosis when my sister's mental health broke down.

    What I may be out on a limb about is expecting to figure out the cause(s) of LS here. If we can lay out a spreadsheet that shows impact (numbers and degree) we could open some researchers' eyes. I really bristled when I read some recently diagnosed woman my age say she was told she had 'an old ladies' problem. If large mumbers of men's foreskins were fusing I think there'd be an outcry.

    I do agree that some indication of the frequency of multiple auto-immune disorders would be of interest. It's pretty early days with things like fibromialgia being taken seriously, so we don't have the only a.a.d. that's being brushed aside.

    Exciting, Sue that you've already roughed out a spreadsheet. I used to do a little focus group work with clients' employees. I've never taken a stats course, don't have a B.A., but I could see patterns and trends on a spreadsheet and write a mean analysis to convince the client to do what we intuitively knew they needed.wink

    • suedm
      suedm Morrell1951

      Posted

      It is only a very basic spreadsheet to focus my thinking. I used to be able to set up a data base  but  that will take me some time to refresh skills and adapt to the different OS of the computer.

      I have had a private message from margaret and i suggested she contact you  to think about how we collect the information etc. I will be away from the computer for the next week of so - gadding about- hopefully- but will give the 'how' some thought. I did say perhaps contacting the moderator may be helpful. Perhaps having a safe email address separate from our private addresses could be a way forward

      Before the turn of the last century i was asked to teach student nurses the basics of statistics - that meant mugging up VERY fast! but the remanents are still there- somewhere i hope.

      It would be great to have charts illustrating numbers and variety of symptoms - but i get ahead of myself - first is finding a way to collect eht inital data!

    • Morrell1951
      Morrell1951 suedm

      Posted

      Sounds like you might have the skills. Enjoy gallavanting.
  • Vibrant_Health
    Vibrant_Health suedm

    Posted

    Its great that you have excel skills, suedm.  The basics should come back, like riding the bike.  I am still thinking how best to put together the spreadsheet.  Thanks so much for your enthusiasm.  Enjoy the gallavanting about, Sue.
    • suedm
      suedm Vibrant_Health

      Posted

      Just a quickie to you all as I am about to help out in our local community shop for the morning and it is 7 45 AM in Sunday!! Thank you too for inspiring us all and to you too Morrell  and Chrissy et al

      I am delighted that so many have taken up the suggestion, with such enthusiasm and constructive thinking

      Marey I think your idea of brainstorming is excellent and was interested on your take on the causitive factors

      I am dashing around on motorways for the next few days so will have my thinking cap on even tho I will be silent for the time being

      If any of you have thoughts about how we can collate the information easily - without having to cut and past each and every thread it would be helpful too

       

  • marey
    marey suedm

    Posted

    Hmmmmmmmm yes, sue, we will need to focus eventually and a succient report would be eye catching....how ever at this point in time it may help to just brain storm...allow ...express....think.

    there is a real sense of communal effort in this thread and its uplifting ....it may also be purposeful...but maybe its the 'way' - the process - that may prove to be of greatest value.

    i am enjoying following the developing points of view. ....and like being made to think. LS types 1 and 2 ....brilliant!! Maybe future text books with follow the Chrissy classification !! And why not ..we're the ones applying thought to these matters.   

    so a wide reaching 'ramble' may uncover elements we find we do wish to bring into focus. We may decide to cut a lot of material that we visit to get to the point. But what particular point? So its worth asking each of us what our questions are....What is it that we would each really like such research to consider/examine/resolve?

    Here are my questions :

    1/ What factor(s) have caused me to develop LS?

    2/ How am I going to heal? 

    Thats it in a nutshell, ie really brief (!)... but usually there is a hypothesis by way of answer to these questions. I'd really like to hear what others are thinking.

    here are my own answers:

    1/ the cause(s) of LS are toxins, including placental toxins, hypothyroidism and low iodine due to its replacement by bromine in flour, bread and processed salt

    2/ the cure involves detoxification and herbal purification, adjustment of misaligned body systems, hormonal re-balancing, micro nutrient replacement, body recompetance training, supplementation, self belief.

    measuring signs and symptoms at onset and after cure:

    by lab tests: full thyroid panel, mercury levels, other tests for nutrient deficiencies, other raised markers/inflammatory levels, visual diagnosis/biopsy.

    as per Vibrant Health in her first post here: what we know of predecessor methodology  who have healed. Maybe we need a really welcoming meet and greet kind of questionaire so we don't lose people who are kind enough to come back to share their info. ??

    what else?

    • Morrell1951
      Morrell1951 marey

      Posted

      Marey, I'm equally convinced that some of the worst foods in leaky gut – white sugar, chocolate and crispy snack foods – are at the root of my LS. And I believe stress – including pre-natal – is a huge kick-starter of leaky gut. I've had 100% success with this theory in relation to my psoriasis. I think LS just needs me to be a bit more careful with food than sporiasis requires. Maybe genital flesh is more sensitive that the rest of my skin. Seems sort of obvious now.

      So, that's early-onset, my hypothesis.

      However, that doesn't explain why Mila's early-onset and has thyroid trouble.

    • lesley13960
      lesley13960 marey

      Posted

      Hi Marey and the others in this thread.  I have joined your discussion today as I was searching for research into causation of LS.  I have had the condition about 20 years.  I work in counselling and psychotherapy and this lead me to consider causaitve factors from this viewpoint.  I can pinpoint to the day that it started and the stress that I had expereinced in the months before.  This has lead me to question whether addressing the psychological factors would be a path to heal my symptoms.  So I am my own experiment and using therapy.  I was already having homeopathic treatment and had changed my eating plan.  I have written a journal since the day it started I think its called blogging now, I also have scored the symptoms in a rough and ready way 1-10, although now I am aware there are validated measures that can be used.  So I am excited by the work you are all doing and willing to join in with any help that I can.  I am also interested in finding out if there are commonalities in our histories prior to onset.

      Keep up the good work!!

    • Morrell1951
      Morrell1951 lesley13960

      Posted

      Hi Lesley,

      I'm convinced LS is stress-related as most of us here agree. Mine certainly is. I believe decades of stress has damaged my liver and gut, so it's not easily fixed. I think I had a stressful babyhood, during which LS was labeled 'diaper rash'.

      I'm super calm after twenty years of Buddhist practice and ten of retirement, but LS is still with me.

      I'm also wonderng about monthly hormonal fluctuations.

       

    • marey
      marey lesley13960

      Posted

      thanks lesley

      i agree exploring commonalities is useful....and the pschy element surely contributory...afterall the hypothalamus rules all our body systems....then there s nutitional deficiencies...especially in relation to hormones.

      i had some homeopathy too...staphystagra featured.

      if you check back in the alt med section theres a woman who cured herself after recognising abuse factors...there are an increasing number of cures...am sure we will be among them!

      on the journey with you x

    • marey
      marey Morrell1951

      Posted

      'liver damage and hormonal fluctuations.....'

      morrell you might wish to have your T1 AND T2 measured....alternatively you could experiment with the best dose of selenium for yourself....200 mgs is a good start point...we're so often deficient...together with iodine painted on to redress all the haloides we're exposed to.

      could really help x

    • Morrell1951
      Morrell1951 marey

      Posted

      There's a 1989 article "Lichen Sclerosus and sexual abuse" by Berth-Jones. In a letter to the editor Drs. Priestly and Bleehen argue against Dr. Berth-Jones who said that LS is never related to sexual abuse, but is sometimes misdiagnosed as symptoms of SA. They say that 'chronic trauma in the presence of low grade skin infection may on occasion lead to the changes of lichen sclerosis'.

      Since before my diagnosis I've suspected aggressive management of toddler-age bedwetting as the beginning of my troubles.

    • marey
      marey Morrell1951

      Posted

      yes very thoughtful re your early history.

      there have been distressing cases of LS being mistaken for SA ....with tragc results including child removal from home....but that was mistaken.

      think its more that abuse may be part of childhood that the adult reflecting back contends with to their benefit in  curing by addressing all factors in LS....whether psychological or even as you point out of such severity that LS did actually manifest with that concurrent trauma.

    • Morrell1951
      Morrell1951 marey

      Posted

      I think being taught at a tender age not to complain about (or scratch) vulvar discomfort – whether from undiagnosed LS, SA, or well-intentioned methods of potty training – sets us up for grinning and bearing painful sex, which  causes chronic vulvar trauma, yeast infections, and raging LS. That's my story.
    • Morrell1951
      Morrell1951 marey

      Posted

      Marey I missed your comment about having my T1 and T2 tested. I Googled "T1 and T2 thyroid hormones" and the third from the top hit was a commercial alternative doctor's site, Jonathan Wright, who's developed a supplement for anyone who falls below the standard diagnostics for thyroid problems.
    • Morrell1951
      Morrell1951 marey

      Posted

      So, if the idea is that late-onset LS may be caused or worsened by sub-clinical thyroid problems, that wouldn't explain lifelong LS.
    • marey
      marey Morrell1951

      Posted

      was responding to your reference to having had a damaged liver in childhood...the conversion of T4 To T3 takes place in the liver so if you've ever had your TSH measured you could well have got a false 'ok' reading ....the other thyroid markers don't even get considered during this test. i was specifically thinking of you. x
    • Morrell1951
      Morrell1951 marey

      Posted

      My liver wasn't damaged in childhood. I think it's probably not great from drinking in the 70s and 90s. And toxic stress. Not 'damaged' as in infectious hepatitis as a child. My sister had that. I've looked at the symptoms. I have no reason to suspect thyroid, not even sub-clinical.

       

    • marey
      marey Morrell1951

      Posted

      noted.

      just picked up via your short hand to lesley...sometimes we drop vital clues!

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