Lichen Sclerosis Anyone????

[jordozmom]

(Warning - TMI to follow!)  Over the past 6 - 7 months I have been suffering from terrible burning and redness around my vagina.  At one point they thought it was a bacterial infection, then a yeast infection, then back and forth and back and forth until now they've decided that it is likely skin related and not an infection after all (the last labs came back negative for any infections).  After reading articles and comments of people dx with Lichen Sclerosis, I am sure that is what I have. At my last ob/gyn appointment the doc said if it wasn't better within a few weeks we were going to start talking biopsies and referrals to a dermatologist.  What I've been amazed at, however, is from what I have read on the web many, many of the people with Lichen Sclerosis have another autoimmune disease, and LS is autoimmune related.  So I am curious if any of you fellow SJS sufferers have had this problem either by being DX or just in general?  My symptoms are (again, TMI to follow!) dryness, redness, irritation, burning, tearing, splitting skin, hardly any discharge at all, and patches of white skin, or red skin laced with white plaque.  The skin is photosensitive (gets really warm under the gyn's lights - like a sunburn) and the texture has changed.  The only things that provide relief are getting air to the area, cool water rinses, using scent free soap, and ice packs.  It also feels beter when the area is moisturized but I have to be very careful because even some lubricants dry me out or irritate the skin.  Sex is nearly impossible as it is horribly uncomfortable and I tear so easily.

This whole thing has been just so frustrating and scary!  I've tried to keep our sex life alive but it is difficult when a vital part is out of commission!

[harrigan]

Oh Jord - that is one part of this disease I am so happy not to share with you.  It sounds excruciating and it must be very hard to keep a smile on you face with flames down below.  I have heard of LS as my daughter had something similar - she has an AI disease called mucous membrane pemphigoid.  She has been on CellCept sine she was 12, 5 years ago.

I can't help in terms of advice, other than to avoid tights and manmade fibres.  Wear a skirt and go commando at home when you can!  Poor you XX Ailsa

[Suzy]

I have never heard of Lichen Sclerosis, but you have my full and absolute sympathy. I had pretty much all of the symptoms you describe a few months back during a bad flare and round of strong antibiotics. It was yeast-related but it took several rounds of Diflucan to knock it out, and my doctor stocked me up on plenty of refills, bless her! I don't know how you've dealt with this for 6-7 months! Poor you! The only thing that gave me temporary relief was ice packs and the topical Monistat cream, but I'm guessing you've already tried everything.

Suzy

[Sheltiemom]

Hi,

Oh, you poor girl!  Mine was NEVER that bad, some burning and some splitting with small amount of bleeding when I got careless about keeping up the regimen, but was brought under control by the new GYN I went to see six years ago.  I LOVE her.  Her treatment plan did the trick and continues to do so.  She Rx'd Premarin cream used in conjunction with clobetasol.  But they have to be used strictly according to the way the GYN says.  I also had a biopsy, and it was negative for infection/malignancy.  Had LS LONG before the Sjogren's showed up - unless this was the very beginning of it and the only symptom.

Best of luck, and you might want to ask your GYN about Premarin cream combined with clobetasol, because the clobetasol can burn a bit on irritated tissue. 

Best wishes and cheers,

Sheltiemom

[Sheltiemom]

Hi, again Jordozmom -

P.S.

Once the more or less nasty LS was cleared up, it's been mostly only Premarin since, unless I think I need to do the clobetasol as well for even just a day.  When it was sort of bad that time, she said to really pile them on - as if I was icing a cake.  She's a funny lady. 

Sheltiemom

[jordozmom]

Harrigan - I am SO sorry about your daughter!  That poor thing!  And suffering with this stuff at such a young age, too.  I feel terrible for even complaining!  The CellCept is helping her, I hope?  Well good luck to you both and I'll say a prayer for her.  Thanks for the comment and for the sympathy as every little bit helps! 

Oh Jord - that is one part of this disease I am so happy not to share with you.  It sounds excruciating and it must be very hard to keep a smile on you face with flames down below.  I have heard of LS as my daughter had something similar - she has an AI disease called mucous membrane pemphigoid.  She has been on CellCept sine she was 12, 5 years ago.

I can't help in terms of advice, other than to avoid tights and manmade fibres.  Wear a skirt and go commando at home when you can!  Poor you XX Ailsa

[jordozmom]

Sheltiemom -

Thank you so much for the sympathy - when it comes to this particular problem I'll take it! You know, I remember having problems like this off and on since I was little - along with having minor SJS symptoms since I was little - so I think like you I've had it a long time and it just has never been diagnosed.  When I was in my early twenties I had a round of this but was too mortified to really go and get it treated.  They kept saying it was yeast and then they tried to tell me that I was allergic to the yeast infection and the discharge ??  I was too timid to argue or keep going back.  But not now!  Now I'm in that office every other week to get this thing taken care of!  I just don't have time for this!  Do you mind if I ask - was the biopsy horribly painful?  I've been hearing some bad things about how painful the procedure is.  I'm glad to hear that the treatment plan worked for you as I am reading that some of the thing they prescribe to people don't work.  Technically I haven't been diagnosed yet but I would bet money that is what it is.  Every possible other thing has been ruled out.  Thank you so much for taking the time to respond and for your kind words!  You take care!!

Hi,

Oh, you poor girl!  Mine was NEVER that bad, some burning and some splitting with small amount of bleeding when I got careless about keeping up the regimen, but was brought under control by the new GYN I went to see six years ago.  I LOVE her.  Her treatment plan did the trick and continues to do so.  She Rx'd Premarin cream used in conjunction with clobetasol.  But they have to be used strictly according to the way the GYN says.  I also had a biopsy, and it was negative for infection/malignancy.  Had LS LONG before the Sjogren's showed up - unless this was the very beginning of it and the only symptom.

Best of luck, and you might want to ask your GYN about Premarin cream combined with clobetasol, because the clobetasol can burn a bit on irritated tissue. 

Best wishes and cheers,

Sheltiemom

[jordozmom]

Sheltie -

One more question if you don't mind - do you notice when you have a flare if getting air to the area helps?  For some reason air to the area feels magnificent!  I am trying very hard to avoid tight fitting clothing and I even gone so far as to buy myself some men's cotton knit boxers to wear to bed because the air feels so good (I've even been known to wear them under regular clothes to work when it was feeling particularly raw!). 

Hi, again Jordozmom -

P.S.

Once the more or less nasty LS was cleared up, it's been mostly only Premarin since, unless I think I need to do the clobetasol as well for even just a day.  When it was sort of bad that time, she said to really pile them on - as if I was icing a cake.  She's a funny lady. 

Sheltiemom

[Tinker]

Jordoz, you were asking about the biopsy.  I had a vaginal biopsy for redness in that area after chemo and br. cancer.  I got a shot of lidocaine and it didn't hurt at all.  I bled a lot (I always do) but it wasn't anything at all.  The biopsy was neg but I didn't have any white placques.   It was neg for cancer and that was all I was worried about since it never hurt from the start.

Good luck to all who are worried about this.  I am presently using estrace for vag. atrophy, tears, dryness, and it has helped.

[inga]

Is it possible this is a lack of estrogen?  I use a vaginal ring of estradiol and if I dont use something, that or a cream, my gosh...I won't get into it.  It hurts to talk about it.   It also hurts to read your post.  I hope you can get it taken care of.

[Sheltiemom]

Hi again, Jordozmom -

I don't mind answering your questions at all.  There's probably a huge age difference between you and me.  I'm 73 now, and after three months of being on the Estradiol ring for hormone replacement thereapy post-menopause, I stopped because I didn't think the benefits outweighed the risks.  And I still don't.

First of all, I only use the Premarin cream and the clobetasol externally because that's where my problems are.  Secondly, the biopsy did not hurt at the time, although it did for a couple of days afterwards but certainly nothing I couldn't stand.
Thirdly, air IS great, especially when you're in bed for the night.  And don't wear binding clothes or underwear and be sure the undies are made out of 100% cotton.  Not glamorous, but definitely helps.
Fourthly, do not use shower gel - only the very mildest soap and just a little in the area, that being Dove for Sensitive Skin.

Good luck,

Sheltiemom

[Tinker]

Is it possible this is a lack of estrogen?  I use a vaginal ring of estradiol and if I dont use something, that or a cream, my gosh...I won't get into it.  It hurts to talk about it.   It also hurts to read your post.  I hope you can get it taken care of.

Inga, I, too, was using the esring and it just quit working.  So, I went back to the gyno and she reluctantly gave me the estrace cream but told me to use only on the outside.  But the inside was hurting, too.  I use it as I wish!!  I can't take estrogen as I had estrogen-dependent breast cancer 11 yrs. ago.  

But , it has come down to a quality of life issue for me.  

Give me the ESTROGEN and if I die, I die.  It's my decision, not hers.  

[tuckerdog]

I have it too  Dermatologist gave me a steroid cream for when it flares.  In my case it itches.

Tuckerdog

[harrigan]

Jord, my daughter had biopsies of her gum and down below and she said the gum was far worse.  She said the v. biopsy stung a little but she was not bothered by it after the next day.  The gum biopsy was a larger site and was painful for a week.  I know it is easier for me to say as I'm not the one suffering but I would go ahead with whatever tests might get this fixed for you.  It sounds miserable and I admire your determination at the Drs to keep asking for help.  Good luck on the pants-problem too.  I think if it was me I would go out with no more than a secret smile on my face if it felt better! 

[inga]

You know......that estrogen thing is really a quandry.  I was on HRT, estrogen only for 8 years...very low dose.  After they stopped it....all 'heck' broke loose.  That is when the
ANA went up and all the bad symptoms started, plus cholesterol went up, inflammatory markers up, weight up, muscle mass down...hideous.  I am 3 years out from stopping it, and have that estrace ring, which I am not thrilled with....but, at least I can walk and sit!  I am thinking of going to the cream.

I fully understand how one can feel that it is OUR choice to use it or not, if we are fully informed on risks.  (My mom had Brst. Ca, and yes, I am at risk....altho hers was post menopausal.)

Anyway, the ring is mostly local estrogen....not systemic, so they say, but all drugs are somewhat systemic.

Well I do hope you find a remedy.  It hurts and NO you can't live with it.