LS Perhaps we could compile a Fact Sheet
Posted , 9 users are following.
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
marey suedm
Posted
i will support the project in any way i can.
thanks for your enterprise.
love best wishes and keep on dancing...
marey x
Vibrant_Health suedm
Posted
Wonderful that the project is already picking up momentum.
Morrell1951 suedm
Posted
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
suedm Morrell1951
Posted
I will have a go later on
Without sounding patronising...I hope...Well done!
Morrell1951 suedm
Posted
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
marey Morrell1951
Posted
Morrell1951 marey
Posted
marey suedm
Posted
marey suedm
Posted
Morrell1951 marey
Posted
Morrell1951 suedm
Posted
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
Morrell1951 suedm
Posted
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
Morrell1951 suedm
Posted
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
suedm Morrell1951
Posted
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!
suedm Morrell1951
Posted
suedm Morrell1951
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Morrell1951 suedm
Posted
marey Morrell1951
Posted
other relevant info...labs
eg cholesterol levels
hb
white cell count
what else................?
suedm marey
Posted
marey suedm
Posted
TSH, T1, T2, T3, T4. Free T3, Free T4, Reverse T3
suedm Morrell1951
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suedm marey
Posted
marey suedm
Posted
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
suedm marey
Posted
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
suedm marey
Posted
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
ChrissyC marey
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ChrissyC marey
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ChrissyC suedm
Posted
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.