LS Perhaps we could compile a Fact Sheet

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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!)

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  • Posted

    brilliant sue DM,

    i will support the project in any way i can.

    thanks for your enterprise.

    love best wishes and keep on dancing...

    marey x

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  • Posted

    I need a few days to think this through, Suedm. 

    Wonderful that the project is already picking up momentum. 

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  • Posted

    As an experiment I compiled my own fact sheet and tried pasting it into the 'About' section of my profile here. It has quite a short limit of lines, so that's not going to work. It wouldn't display a quarter of this.

    Age: 62

    Gender: Female

    Age at onset of LS: birth

    Age at diagnosis of LS: 62

    Primary health care professional treating LS: Gynecologist

    Treatment(s) prescribed: Clobetasol cream, Premarin cream (intra-vaginal)

    Treatment(s) used: Clobetasol

    Treatment(s) applications: 2x per week

    Extent of LS involvement: anal area, vulva

    Extent of white patch(es): perineum

    Chronic tearing: perineum

    Age when sex first caused tearing: 22

    Children: 2

    Ages of childbirths: 30, 34

    Atrophy of labia minor: yes

    Atrophy of labia major: no

    Narrowing of vaginal introitis: yes

    Fusing of clitoral hood, age(s): 38, 51, 61

    Sex is impossible without pain and/or tearing: yes

    Periods of remission when sex was comfortable: 32-48, 57-60

    Yeast infections: chronic when sexually active

    Main known food triggers: sugar, chocolate

    Other known triggers: sex, sweat, tight pants

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    • Posted

      That looks to be a very clear resume of the condition. I note that stressors  havent featured though

      I will have a go later on

      Without sounding patronising...I hope...Well done!

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  • Posted

    Here's an updated version with stressors added:

    Age: 62

    Gender: Female

    Age at onset of LS: birth

    Age at diagnosis of LS: 62

    Primary health care professional treating LS: Gynecologist

    Treatment(s) prescribed: Clobetasol cream, Premarin cream (intra-vaginal)

    Treatment(s) used: Clobetasol

    Treatment(s) applications: 2x per week

    Extent of LS involvement: anal area, vulva

    Extent of white patch(es): perineum

    Chronic tearing: perineum

    Age when sex first caused tearing: 22

    Children: 2

    Ages of childbirths: 30, 34

    Atrophy of labia minor: yes

    Atrophy of labia major: no

    Narrowing of vaginal introitis: yes

    Fusing of clitoral hood, age(s): 38, 51, 61

    Sex is impossible without pain and/or tearing: yes

    Periods of remission when sex was comfortable: 32-48, 57-60

    Yeast infections: chronic when sexually active

    Main known food triggers: sugar, chocolate

    Stressors: Emotional upset, anger, worry

    Other known triggers: sex, sweat, tight pants

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    • Posted

      other practioner involvement...this might be gp for some....osteopath or herbalist or other for others....
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    • Posted

      'Primary Health Care Professional', right I guess that suggests only one. New edit to come.
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  • Posted

    Age: 62

    Gender: Female

    Age at onset of LS: birth

    Age at diagnosis of LS: 62

    Primary health care professional treating LS: Gynecologist

    Medications(s) prescribed: Clobetasol cream, Premarin cream (intra-vaginal)

    Medication(s) used: Clobetasol

    Medication(s) applications: 2x per week

    Alternative protocol recommended: n/a

    Alternative protocol followed: shiatsu therapy monthly

    Extent of LS involvement: anal area, vulva

    Extent of white patch(es): perineum

    Chronic tearing: perineum

    Age when sex first caused tearing: 22

    Children: 2

    Ages of childbirths: 30, 34

    Atrophy of labia minor: yes

    Atrophy of labia major: no

    Narrowing of vaginal introitis: yes

    Fusing of clitoral hood, age(s): 38, 51, 61

    Sex is impossible without pain and/or tearing: yes

    Periods of remission when sex was comfortable: 32-48, 57-60

    Yeast infections: chronic when sexually active

    Main known food triggers: sugar, chocolate

    Stressors: Emotional upset, anger, worry

    Other known triggers: sex, sweat, tight pants

    Family members with LS: n/a

    Family members' auto-immune disorders: Mother – Rheumatoid Arthritis, Interstitial Cystitis, Irritable Bowel Syndrome; sister – hypothyroid

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  • Posted

    I wish this forum allowed us to edit comments.

    Age: 62

    Gender: Female

    Age at onset of LS: birth

    Age at diagnosis of LS: 62

    Primary health care professional treating LS: Gynecologist

    Supplementary health care givers: Shiatsu therapist

    Medications(s) prescribed: Clobetasol cream, Premarin cream (intra-vaginal)

    Medication(s) used: Clobetasol

    Medication(s) applications: 2x per week

    Alternative protocol recommended: shiatsu therapy monthly

    Alternative protocol followed: shiatsu therapy monthly

    Extent of LS involvement: anal area, vulva

    Extent of white patch(es): perineum

    Chronic tearing: perineum

    Age when sex first caused tearing: 22

    Children: 2

    Ages of childbirths: 30, 34

    Atrophy of labia minor: yes

    Atrophy of labia major: no

    Narrowing of vaginal introitis: yes

    Fusing of clitoral hood, age(s): 38, 51, 61

    Sex is impossible without pain and/or tearing: yes

    Periods of remission when sex was comfortable: 32-48, 57-60

    Yeast infections: chronic when sexually active

    Main known food triggers: sugar, chocolate

    Stressors: Emotional upset, anger, worry

    Other known triggers: sex, sweat, tight pants

    Family members with LS: n/a

    Family members' auto-immune disorders: Mother – Rheumatoid Arthritis, Interstitial Cystitis, Irritable Bowel Syndrome; sister – hypothyroid

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  • Posted

    Shoot, I forgot my own 'other auto-immune disorders'.

    newest edit:

    Age: 62

    Gender: Female

    Age at onset of LS: birth

    Age at diagnosis of LS: 62

    Primary health care professional treating LS: Gynecologist

    Supplementary health care givers: Shiatsu therapist

    Medications(s) prescribed: Clobetasol cream, Premarin cream (intra-vaginal)

    Medication(s) used: Clobetasol

    Medication(s) applications: 2x per week

    Alternative protocol recommended: shiatsu therapy monthly

    Alternative protocol followed: shiatsu therapy monthly

    Extent of LS involvement: anal area, vulva

    Extent of white patch(es): perineum

    Chronic tearing: perineum

    Age when sex first caused tearing: 22

    Children: 2

    Ages of childbirths: 30, 34

    Atrophy of labia minor: yes

    Atrophy of labia major: no

    Narrowing of vaginal introitis: yes

    Fusing of clitoral hood, age(s): 38, 51, 61

    Sex is impossible without pain and/or tearing: yes

    Periods of remission when sex was comfortable: 32-48, 57-60

    Yeast infections: chronic when sexually active

    Main known food triggers: sugar, chocolate

    Stressors: Emotional upset, anger, worry

    Other known triggers: sex, sweat, tight pants

    Other auto-immune disorders and age of onset: Psoriasis, birth

    Family members with LS: n/a

    Family members' auto-immune disorders: Mother – Rheumatoid Arthritis, Interstitial Cystitis, Irritable Bowel Syndrome; sister – hypothyroid

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    • Posted

      WoW you have been busy! I thought it may be possible to cut and paste info - it doesnt seem to be possible - perhaps the moderator has some ideas how best to use this site?

      Thank you Morrell- I have been out and about - Again- and more of the same for the weekend, Still the thunder storms predicted may keep me awake if the net doesnt go down!- There is a tendency for me to go off line for weeks at a time when the weather is hot or cold - something to do with the fan and the heaters in the exchange.......! i make no comment!

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    • Posted

      One can cut and paste ones own reply but i am unable to use YOUR format without typing it again !
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    • Posted

      I found that if i copy your text and paste it on to my word programme i can edit it - I will have a go tomorrow, after I return a friends dog -

       

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    • Posted

      That's weird. Maybe it's some sort of spam prevention thing. But pasting it into your computer's text program makes sense. So we can put that in the instructions – the first post – of the collection thread.
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    • Posted

      stunning morrell....double well done!!

      other relevant info...labs

      eg cholesterol levels

      hb

      white cell count

      what else................?

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    • Posted

      of course! yes thanks sue....so

      TSH, T1, T2, T3, T4. Free T3, Free T4, Reverse T3 

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    • Posted

      Chrissy C mentioned that Margaret 289 and Atrophy in Lichen Sclerosis   with others chatted about similarities- i have replied to Margaret to ask if there is a compilation of their findings. She mentioned allergies in her thread - would that also be a sensible inclusion? in a profile?
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    • Posted

      Perhaps for simplicity just "thyroid levels"- let a PhD student pick up on detail if necessary, again one could put blood tests out of  normal levels
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    • Posted

      Well..........I 've cited the full thyroid panel for a reason. Will explain.

      But investigations and results may not be standardised as yet. This, linking in with our proposed role in MD education, is where we have a contribution to make towards advancing medecine....kinda of our responsibility instead of just whingeing....but i love a good whinge too...and we need to ventilate.

      So the reason for including ref to the full panel is that normally its just TSH that gets measured. TSH has for years been assumed to be normal at around 4, or 4.5. But that is way too high. 1.5 is what it should be. The results were being skewed by the vast numbers of people who actually have hypothyroidism without realising it (or rather without the med profession recognising it...which must be awful if you know something is wrong but are continuallt told you're in the normal range...when you're not) and thats likely to include a number of us too. Also we have to actually ask for the reading when we get our results as the old interpretation may still be being assumed and we don't know which of our GP s are up to date...or Consultants for that matter. So re lab tests ...and we haven't yet devised the full extent of investigations which may be indicated for our condition...lets spell it out.

      Think its fine that its going to be a long document!!   Also Chrissie ...its only one question that distinguishes duration of the condition...if asked at an early point ...the sequel of any differences thereafter are observable...so perhaps no need for a separate document....and wouldn't want Morrell to feel out on a limb...so if ok with you Chrissy and Sue may we make this an all inclusive single document...which will fulfill many functions....xx

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    • Posted

      Marey I agree that we do need all the information available however we must ask

      What do we want to achieve?

      for whom

      and when

      I propose we want to

      a) inform newly the diagnosed and provide  a support mechanism

      b) give the medics indicators of the

      1.numbers and spread -( internationally)of those diagnosed and

      2. the range of symptoms

      3. how it affects daily living

      c) provide material for further research

      Timescale???

      Anything else?

      If we are not clear in our objectives then there is no point in doing anything else than informal help of newbies- and that IS important

      The document that Morrell has created so beautifully gives a starting point for data collection

      I have considered going thro the responses in the past few months collating the informal data on a spreadsheet, however that does mean a lot of time on and off line . This is possible for me in the winter, less possible in the summer

       

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    • Posted

      When I worked short (1/2 page of A4)was read; long documents went unread. If we want to catch the attention of researchers in my view we must be pithy to start with. I spent more hours reducing the length of reports while retaining the core of the information than the orignial data collection.

      There are several threads on this site- that is topics -relating to the condition, much of the substance of the threads have similar themes and i think it wouuld be useful to collate the information

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    • Posted

      Gosh Marey I certainly don't want ANYone to feel out on a limb, least of all Morrell who's formidable intellectual skills we need on a project like this. smileWe're all in it together both with our symptoms and for the project.
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    • Posted

      Oops didn't mean to post that yet. Was just going to also say maybe we could have different sections in the questionnaire where people fill in the ones relevant to them eg if one section asks about allergies and you didn't have any you would skip that section.And so with the 2 types of LS as I see them - I can't help wondering if these are a bit like type 1 and type 2 diabetes, similar symptoms but different causes for the condition and really would have different answers to questions. But I'm quite happy to go along. You can't have too many ideas differing, it would just be great for something to get off the ground.
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    • Posted

      What we want to achieve really is key isn't it. I know for myself as a late onset its about what on earth happened in my body to change it from being healthy to not. Did I do or not do something or is it just an aging thing that happens to some people. And for lifers its still about what is happening in the body to cause this.

       I saw my own consultant at a vulva clinic (this is UK). I was lucky my GP was proactive in FINDING somewhere to refer me, I know others are not so lucky. This vulval consultant said there are no LS clinics and that their own vulval one had more LS referrals than they know what to do with. She said that when new doctors choose gynacology as their specialism no one picks LS for their field of study and there is NO research being done. (She also said it was her private opinion that most gynacologists are still men and have no interest. A male bastion still so a side issue is getting more women into gynacology.)

      Anyhow I do feel that any data collected has to be about convincing the medical world that the scale of the problem is both large enough and varied enough to warrant serious research being undertaken, serious money thrown at it.

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