LS prognosis

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I've been coming to the realization after 18 months of treatment that the only treatment our dermatologists and gynaegologists can offer (ultrapotent topical steroids) stop inflammation and open wounds, but they do not stop the forward march of disfigurement in my case. The hardening and tightening of a ring around my vaginal introitus continues. I think after menopause the prognosis is much worse. This review doesn't seem to address this, unless somebody's a better reader of this stuff than I am.

I found this review in the American Journal of Clinical Dermatology, of all studies as of 2012: "Diagnosis and Treatment of Lichen Sclerosus: An Update". Pretty good news for those with early diagnosis who stick with the clobetasol.

"In a descriptive cohort study with a mean follow-up of 66 months, 327 patients (74 girls and 253 women) with vulvar LS have been treated with topical corticosteroids. Clinical signs improved in nearly all patients, but only 22 % of the girls and 23 % of the women showed complete resolution of clinical signs with return to normal skin texture and color. The concept that prepubertal LS resolves at puberty appears not to be true in the majority of patients. Seventy-five percent of girls who develop LS prior to puberty will continue to require maintenance therapy after menarche.

There is a significant risk for women with vulvar LS to develop scarring with loss of vulvar architecture and normal function. Cooper et al. showed in their study of 327 women that a delay in diagnosis of 2 years or less was associated with less scarring at diagnosis. In a second long-term study (mean follow-up 6.2 years), the authors compared the data of 84 fully compliant women with 45 partly compliant women with vulvar LS. Ninety-eight percent of the fully compliant patients achieved complete symptom control, including ability to resume sexual activity without pain. None had disease progression. In partially compliant patients, only 75 % achieved complete symptom control and 35 % experienced progression of disease with scarring and fusion."

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  • Posted

    Compliant with what or with whom? Are they saying 98 percent of LS sufferers  who used clobetasol never had any further problems with their LS? I am amazed.

    Who were the partially compliant and what didn't they comply with which caused a quarter of them to still have symptoms of their LS whilst nearly everybody else was having it stopped in its tracks?

    I have been very compliant yet still experienced relentless progression. I have read forums for over 12 years now and seen all the complaints, read all the doctors comments,the consutants findings, the specialists recommendations and all the tips from woman to woman especially about moisturisers and barriers and washing and bathing and keeping the urine off the LS skin.

     I have done the lot, taken every step, yet it has progressed inexorably. Yes, i know how to "manage" it so that discomfort is reduced,  but as for the actual architecture, nothing has stopped the shrinking, twisting, sticking, covering over of the labia and clitoris. I am left with a small opening to pee through and need to keep that open using a lubricated plastic tube, no longer having a sex partner.

    The fusing seems to happen when we are not looking but one night a few years ago I watched it happen. The inner labia were in the process of sticking further as I went to apply the dermovate. I pulled the lips apart and saw the sticky strands between them. I let them go and they stuck so fast I could barely pull them apart again. It was late at night and I was tired. I could not sit like that all night holding the skin apart. I wished there was something to hand I could place between them

     sides to prevent the sticking, but I knew if I let go for just a couple of seconds  it would be stuck fast....which is what happened. I was not only compliant but had caught it in the act and there was nothing at all I could do to stop that process. 

    These specialists learn from their patients and reflect what they learn back to us. They can conduct as many statistical experiments and keep as many records as they like, and that is interesting, yes, but they are not finding anything out that we are not telling them.

    Twelve years ago the threatment was clobetasol and moisturisers and barriers, and today it is the same.

     Morrell, we must just be unlucky to be so compliant yet live with the progression of the disease I think. My last  bit of fusing took place about 4 years ago, 8 years into the LS, and it is stalemate on the last few centimetres.

    Has anybody here found that treatment halts the progress of the LS? I don't mean the nasty symptoms but the visible progression? I am miffed.

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    • Posted

      Joodie, you and I are on the same page. My fusing over the clitoris happened in a matter of weeks. Then I got the smegma cyst and the rest was history.

      I'm pretty depressed that I'm well on my way to where you are and there's nothing I can do to stop it. When I embarked on my plan to use my fingers to 'dilate' when I do my twice-a-week pre-soak, I imagined it would be sort of fun. Ha! Instead I've been noticing these hard lumps of scar increasing up the back of my vagina and this band that feels like a rolled-up condom right around the rim. It hurts to stretch it and I'm not optimistic that I'm even helping.

      The way I see it now is just like my mother's rheumatoid arthritis. Thanks to drugs, she has no pain, she's gone the distance beyond all expectations, she only has some swelling when she's stressed out or she overexerts her joints. But the disfigurement marches on.

      I know the hardcore alt med fans with think I'm capitulating here, but on the contrary – it's really important to keep up the treatment so we don't get cancer. There's no time to fool around. And grinning and bearing painful sex is only koebnerizing the problem area, making it worse. I wish I could reverse all the painful sex I put up with.

      If we want a communication campaign it should say, "Don't grin and bear it! Painful sex could mean you have lichen sclerosis. Google it. And see your doctor ASAP.

      Maybe we should all carry Sharpies and just write it on stall doors.

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    • Posted

      I totally agree what you are saying here.  (If it wasn't for our own initiative, where would we be.)  The medical world does not necessarily move forward in this, but also not with a number of other health issues. In this we're not alone.   

      I too was closed up overnight with a small opening for peeing left.  Joodie, I would start the ball rolling - make an appointment with your doctor, then go to a gyna who truly understands where you are at.  Talk about dilation of the opening still left.  There is some good knowledge out there that can help.  Don't wait too long anymore.  All goes under anestetics, it's very doable.  

      I again took note of your excellent remarks, Morrell.  I'm collecting text for a possible flyer.  People need to know.  Early detection is key.  If we can not be helped sufficiently with what is offered, then perhaps other people can benefit from our experiences.  Let people know that this illness exists.   

      The psychological part is the hardest, I find.  That is most likely also the hardest element to overcome when people notice something is wrong.  Especially in this 'oversexed' world.  How would our 'advertisement' come across?  

      I think that no illness for which there is not really a cure, is easy to bare.  

       

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    • Posted

      Hanny said - "Talk about dilation of the opening still left.  There is some good knowledge out there that can help.  Don't wait too long anymore.  All goes under anestetics, it's very doable"

      We can be cut to widen the opening, yes. That is no more than a simple basic solution though so I would like to know what the "good knowledge out there " is to cheer me . 

      If ever it comes to that crunch for me I would ask for a catheter to be fitted during healing however .

      I heard it closes up again ( well it would wouldn't it? it is LS skin don't forget ).

       

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    • Posted

      Hanny, whether we scrawl on doors with markers or leave flyers in washrooms we can put info out there as rebellious individuals. A flyer in the case at the doctor's office is easy to ignore and LS is something many of us have purposely ignored for too long. There's somthing urgent about messages left by real indivdual women anonymously in a place where a woman can take it in alone and go home and look it up. It's like a gift.
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    • Posted

      It's not a cut Joodie, it is a stretching.  That is a remarkable difference. No anti-biotics needed nor a catheter.   True, it takes a bit of courage to go for that first pee.  After that a better world opens.

      I too was very worried that it would close up again.  But it didn't.  Just have been very diligent with baking soda rinsing, baking soda baths and loads of coconut oil, for starters.  And not to forget - the process of dilating.  Add to that my very strict diet: no sugar, alcohol, caffeine, soya, gluten.

      Do I know which elements made the biggest difference?  No I don't.  Let's say it is the whole bundle that contributed.  Plus a ridiculous determination. (sometimes wavering)  

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    • Posted

      That's indeed a powerful thought Morrell - messages left by real women, anonymously, in a place where women can take it in alone and go home and look it up.  It could be a gift to someone, wondering for the longest time what it is that's bothering her especially at night. 

      Sometimes you see these bulletin boards in supermarkets or other where everybody can pin their advertisements for their club, the baby sitting services they have to offer, the puppies that are for sale etc.  What do you think?  Could that be a place where one could put up a flyer like what we had in mind?  What other places are there, public places?  Can you think of any other?  

       

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    • Posted

      You have to get permission to post on bulletin boards. I like catching women with their pants down, alone, private. We can print a pile of flyers or business cards and a small scotch tape dispenser and tape them to the inside of cubicles – no need to vandalize. They only need a simple statement/question like I wrote above to twig someone to Google LS.

      I don't remember how I found it and diagnosed myself. Probably Googled 'white patch and tear on perineum'. At that point I was not even thinking 'painful sex', because I never had any other kind.

      "Painful sex could mean you have lichen sclerosis. It's not an STD. Google it. And see your doctor ASAP. Early diagnosis can make a huge difference."

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    • Posted

      Small is beautiful!  That could be a possible way to get the word out.  I wonder how breast cancer got a better immage?  My mother had to keep this a secret.  Again it was women who united, I think.  

      Now I have to muster the courage.   

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    • Posted

      Just a thought....a lot of us are artists, what about we all donate a painting and get a gallery onboard with proceeds going to LS research to help raise awareness. Media coverage via newspaper, radio and those morning shows.        I think it would be a great way to get the message out - thoughts ladies?
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    • Posted

      Because these women were seen as "incomplete" women.  I was so shocked when I heard how people thought of people like my mother. 

      So now I wonder how people will react when they know 'you're no good' anymore.  

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    • Posted

      Great idea.  However, I wonder who will be the researchers?  Or does the money have to come before the searcher?
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    • Posted

      deb, I think that's an excellent idea.  I tried to post my website, but I don't think its allowed, anyways you can Google me.. Artist Katie Black Fine Art America... I am happy to donate a painting if you do decide to go down that route at any time in the future.  I haven't a clue how you would even begin that kind of campaign, but I am sure that there are people that do...it would definitely help raise awareness...which is what is needed.

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    • Posted

      thanks for the info Hanny. I am using plastic dilators - bought a set of different sizes online a few years ago,am  on the smallest size, next size up too painful.

      I too am on no gluten, also  dairy free, low sugar but started using soy milk instead of cow's.  I am not hopeful but a friend says I must at least try. i will give it six months unless anybody on here tells me it works.

      The baking soda tip sounds good as is used in cancer too apparently, keeps the area alkaline.  Okay. Trying that too now - thanks! 76 years old and never too old to learn.

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    • Posted

      Hi Joodie,

      After the experiment with candles covered with condoms, I was running out of the right size of candle.  (Don't feel bad - I started with a birthday cake candle) (at the time after the procedure in the hospital six times a day to keep all open) (now two times a day)  Thus purchased a set of plastic dilators as well.  Needs lots of oil and patience.  But does make a difference.  

      You switched to soya milk, I went to coconut milk.  (I will become a coconut myself. (ha))  I felt unwell drinking cow milk a long time ago already, and soya didn't work for me either.  

      Yes, alkaline thoughts go into the direction of cancer prevention as well.  Very old thoughts already, from the 1920's.  Imagine, it just recently was brought to my attention.  Well worth a try I think.

      Good luck with all.  I hope that somehow it will become more liveable for you. 

        

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    • Posted

      Hi - love your art!

      British Skin Foundation is the only charity dedicated to skin research and all the donations and fundraising events are crucial to enabling BSF to continue their research. This is just one that came up in a Google search. I really think we could pull something off and in doing so bring about the awareness that is needed with some possible research that just might help us all.

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    • Posted

      Hi , thanks for the imformation about BSF , I have never even heard of them , their profile is very low . l will look them up .
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    • Posted

      Hi , l like idea of using art to promote the LS cause , if all artists on this site and maybe some other artists that could be persuaded to contribute , would it be possible to hold an online auction ??? l admit l haven,t the first clue how to set this up , but there might be an IT expert amongst us ?? lt would raise awareness and money which could be put to research. Cancer , heart etc , all do coffee mornings , marathons ,  wear ribbons ........ and auctions. Just my thoughts  x

       

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    • Posted

      Hi, Thanks..Yes I agree, as Winifred said there are people out there that know how to approach this kind of thing....IT exprerts, or whatever, I also havent a clue how you would even start! but I do think that with all the artists on this site we could definitely use that to our advantage...at the end of the day its about raising awareness on this serious condition.
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    • Posted

      Good thoughts and ideas, I feel the same, but I havnt a clue, this kind of thing is not really my forte! but I know its a good idea.  We will have to see what happens, as I said I am happy to donate a large painting...

       

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    • Posted

      Hi - started a new discussion about this to keep it seperate. Can you reply on there?
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