Causes of Lichen Sclerosus?
Posted , 33 users are following.
What do you think caused your condition?
Any ideas, theories, inklings? A complete brainstorm opportunity....
4 likes, 122 replies
Posted , 33 users are following.
What do you think caused your condition?
Any ideas, theories, inklings? A complete brainstorm opportunity....
4 likes, 122 replies
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lilygirl marey
Posted
marey lilygirl
Posted
i also think it may be familial as my mother had hypothyroidism and some kind of issues...actually with a smell which i noticed. think my sisters itch too but we haven't discussed it much.
heather99258 marey
Edited
Dermatologists advise care of the "barrier" as the basis for almost all skin diseases, and this includes generous use of emollients (greasy ointments) in moisturising and washing, and avoiding any irritants. I have found especially that bathing daily in BathE45 is vital, showers don't seem to gently lift off all "irritants" , which include urine and small traces of faeces (incidentally Arab societies always wash with water after the toilet and consider toilet paper unhygienic).
I then always use a barrier ointment, it is vital this is as simple as possible as many creams contain additives and preservatives which cause sensitivity ( Morhulin is recommended by a dermatologist I know as it is a blend of cod liver oil and paraffin oil., but I find it too thick and prefer to avoid mineral oil, so now I use the Yes oil based lubricant. This can be used in a thin layer, inside and outside the vagina and around the vulva and anus. )
Incidentally I discovered I had sensitivity to propylene glycol after noticing nasal/throat irritation when in the car for a long time, ( proplylene glycol is in air conditioning units), and also horrendous vaginal irritation with oestrogen pessaries, which also contain it. It is in many creams includng some steroid creams. I used Dermovate ointment when LS first discovered and it worked well, but now use Betnovate ointment as maintenance, because although it is weaker, it doesn't contain propylene glycol and dermovate does. This is something to look out for with steroid creams, and also ointments are more effective, and provide a barrier in themselves, as they are based on soft paraffin(like vaseline).
The use of the steroids helps because they reduce inflammation, and hence can break the viscous cycle of itch , scratch, inflammation. It is important to note that steroids in occluded areas like the genitals can also lead to thrush, so any sudden flare up with a lot of itching and redness can be due to that and I would find id best treated with tablets (fluconazole, or Diflucan) because of the issue with creams and preservatives.
As a GP, I can comment on the post about educating doctors! LS seems to have as many different appearances as there are women, as you may have noticed on this forum, and many women have dermatitis(inflammation ) issues in the genital area, due to creams, soaps, thrush, condoms, lubricants and all the other stuff we come into contact with, that it can be hard to be definite about LS. A classic full picture of whiteness, would be easily recognised, but this is very rare. As someone said, it falls between dermatology and gynaecology. Gynaecologists are basically surgeons and can do any surgery necessary but don't have the experience with ointments etc. Dermatologists do the research, and it seems to be mostly men they look at! What does that say??
Sorry for such a long post , but felt people may like the facts as they are. Probably people have different things causing their "barrier" disruption, but the treatment is the same.
Morrell1951 heather99258
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marey heather99258
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Thank you sooo much for your very detailed and informative post. I'm absolutely delighted to hear from you and for the benefit of your experience! Think you may have contributed elsewhere earlier so its great to have you back and thanks for keeping in touch.
Couldn't agree more about the bias towards male beneficiaries in research.
'Circumcision seems to cure males with the condition'....this is very interesting and I wonder if it might equate to the surgical proceedure being offered apparently in Italy ...known as stem cell surgery? Its not a vulvectomy but rather a transfer of fatty tissue to re-bulk the vulva but might involve excision of the inflammatory tissue in the same way that a circumcision might perhaps? Would value your comments.
Lots of material here to reflect upon and thanks again.
Morrell1951 marey
Posted
I'm now appreciating whoever said she carries a small purse-sized spray bottle of water to use when she's out, after every pee. Especially if our treatment could get our skin cleared up – the article says the 'keratinized' (white) skin is super suceptible to irritation by urine – ha! hence the tear that appears in the middle of the white area.
suzanne00 heather99258
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suzanne00 heather99258
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marey suzanne00
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Interesting theory!
marey suzanne00
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I noticed my mother had a changed smell at some point...kind of intriguing..found myself sniffing around to try to work out what I was noticing. I wonder if it wasn't some kind of anti pheramone message...'not fertile' ...being sent?!
suzanne00 marey
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marey suzanne00
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cept its the last thing i'm personally interested in at the mo!! but thats beside the point.
the point is thats there s a difference and for some detectors...(!) it may be just the right message!!
suzanne00 heather99258
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marey Morrell1951
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marey
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This is a new thread from sha.....we're all pitching in with contributions to suggest for modern testing.
The first thing is that I appreciate you will likely want to defend the limitations placed upon the NHS ...(or maybe you won't actually from your earlier perceptive observations about male bias in terms of research benefit...!? ie we're worth it!)
Some of us have been following some of the front runners in health solutions from The States...ie MD's who have gone on to train in naturopathy ..(now a new and separate discipline described as functional medecine). With respect to thyroid testing it seems that if there's a clinical picture THS testing alone is insufficient. In fact THS may come back as being within normal limits whilst other unsought results are out of kilter...due for example to T3 not becoming available adequately.....unrelated to TSH ....perhaps more an indicator of accurate signalling by the pituitary in any event than being directly indicative of thyroid competance . So now simultaneously checking for liver function and T1 and T2 as well as T3 and free T3 and reverse T3 as well as T4 is apparently indicated according to functional medecine practioners. Disconcertingly my GP told me there was no such thing as reverse T3 or free T3, at variance with the functional observations. Ok I need to quote the research....sorry I'll get back to you with attributions.