LS prognosis

Women's health
1

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."

2

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.

3

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.

4

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.  

 

5

Thanks, Morrell, for starting this discussion. Discouraging and realistic. I wish that we had data on the progression of women diagnosed with this, especially in the menopausal years. What percentage of women with LS experience this severe progression, and what percentage (if any) experience ongoing, complete remission, and how many in between? So worrisome. I'm sorry that Joodie and Hanny have gone through this to this extent. I wish that more women would share their story. What about starting a discussion thread where women fill in their raw data--how long, how much progression, how much sex since dx, etc? We need the information. Do we know if anyone is collecting this information? --Suzanne

6

I totally agree. All I need my Gyno and dermatogist for are to keep a check and write a script. LS is in the too hard basket.  These past years have been very lonely and isolated with very little nformation coming from the professionals, that I not only pay a small fortune too, but depended on. I am at a loss as to why after all these years and tears that the only thing that has changed is the information I have gleaned from this forum. Thanks for the info!

7

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 ).

 

8

Alan's 'pinned' topic at the top of this forum was set up for our histories. So far there's only mine. Please fill in yours.

9

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.

10

HI Morrell

I read "the stiff" aas you refer to it and it makes very little seinse - what is the difference between "compliant" and "non compliiant"? All I can tell you in ordinary language is that i am post-menapausal ( 67 years old) and had a thickening and tightening of the introitus. The gynae gave me some relief by removing what she referred to as "the lesions". I appear to be an "a-typical" case of LS asIi have no white patches or any itching. I agree with you that all the doctors can offer us is temporary relief as this disease marches to its own drum and there's not much the doctors can do. I may sound pessimistic but I think the best that can be done is "to keep us comfortable" . Surgery does provide some relief although its pretty painful! 

11

Hi , I dont understand the part about compliants l cannot work out where l am in this study . lt seems to me that these studies are just educated guess work , every docter lve seen has a different idea about  how to treat LS, l am now just putting vaseline on at the moment , l had a biopsy about 5 weeks ago , l think because she cut the bad bits away , its cleaned the area and the improvement l,m having now is because of that, of course l cannot chip away at myself forever. l saw a uroligist last week who was well informed about LS ( l told him about this forum , he seemed interested ) he is going to bring a dermatoligist into my treatment , so l will have all 3 branches of docters , so l will see what happens . Where do these reports get their data , l dont think they even understand its only the tip of the iceberg , there are loads of people out there with LS.

12

A lady recently posted on here that her Gyno mentioned that she sees around ten woman a week with L. schlerosus.  My initial thoughts was that she is either exaggerating, or that there is something terribly wrong, and its become more prevalent!!  in which case surely doctors raise a red flag, or something? I mean, if they are seeing a rise in cases its a clear indication that something is seriously wrong, and I cant help but wonder if they do anything about that.

I agree with Joodie that the fusing seems to occur when we are not looking, it sneaks up on you!  I was never aware of anything really amiss, obviously I knew I had LS but nothing felt sore or sticky, it looked fine until it didn't look fine, which came as a shock, its true I had not been applying the cream regularly which explains why fusing occurred, but not the fact that there was no obvious signs, no soreness, no redness, nada! and this and this alone makes this such a seriously insidious auto immune disorder.

I have a theory that it starts off on the outside of your vagina and then works its way inside, until  in some cases surgery is needed....and it never stops until your in remission, and starts up again when your not.

 

13

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)  

14

Compliance sounds like a very bossy term, but it's just med-speak for following the instructions on a prescription.

Did you have the surgery so you could have sex, or were you so narrow that peeing was becoming a problem?

I recall so vividly twenty years ago lying on a gurney in a cold tiled hallway outside the O.R. waiting to have a tubal ligation so I could have sex (without becoming pregnant). I had a flash of amazement that I was volunteering to go under the knife so I could have sex. Never again.

15

Win, the key points in the exerpt I pasted here are diagnosis within less than two years and compliant (using enough ultrapotent steroids).

Which means I was out of luck forty years ago. I'm just lucky I have the slow kind.

16

Guppy, I think it has everything to do with the baby boomers being past menopause  – we're a huge chunk of the population. And we complain, where women a hundred years ago didn't. They had LS named in the nineteenth century.

I know there are a large number of LS sufferers who also have thyroid trouble (and who blame the toxic world we live in and believe there are ways to remove the poisons), but that doesn't explain ordinary post-menopausal cases or lifelong cases like me. I do think the world has been relatively poisonous since the industrial revolution, but we can't fix that.

My husband has nasal polyps that give him something like a permanent head cold. He's finally used steroid spray for six months and it worked after three or four months till he caught an actual cold. Now the spray won't penetrate and he's as bad as ever. As with LS, surgery is a last resort and, as with LS, the polyps will re-grow.

I wouldn't trade LS for his condition and he feels the same way about LS. Inflammatory disorders suck. He has osteoarthritis, too. I'd rather have LS that bad knees, thanks very much.

So, it sucks, but it could be worse. (I know some of us have all of the above and more. My heart goes out to you.)

17

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?  

 

18

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."

19

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.   

20

Hi Morrell , l did respond well in the begining to steroid cream so the future may be bearable l went un diognosed for a long time though . This latest flare up was down to stress . Time will tell. I see your husband as the same problem as my daughter , she as had 3 operations and they are as bad as ever not nice for a young women, everybody seems to have something , nobody as a perfect life. X