(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!
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
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
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
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
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!
Quote from: harrigan on May 12, 2010, 12:18:47 PM
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
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!!
Quote from: Sheltiemom on May 12, 2010, 01:36:56 PM
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
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!).
Quote from: Sheltiemom on May 12, 2010, 01:42:35 PM
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
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.
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.
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
Quote from: inga on May 12, 2010, 05:59:52 PM
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.
I have it too Dermatologist gave me a steroid cream for when it flares. In my case it itches.
Tuckerdog
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! ;D :D
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.
Jordozmom, I was Dx'd with Lichen Sclerosus in July 2008. I'd had some burning and irritation, but not too severe so it took me several months before I made an appt. with GYN. She checked and noted I had a white patch on the outer labia and did a biopsy right then. They used a very fine biopsy needle and it hurt sharply for 8-10 seconds and that was it as far as pain is concerned.
When the lab results confirmed Lichen Sclerosus, she gave me an Rx for Clobetasol ointment. Instructions with it said to use a.m. and p.m. for 2 weeks and then nightly for "7-12 weeks" before switching to maintenance schedule of 1 or 2 times weekly.
After 6 weeks, I had some slight bleeding, so went back to GYN after discontinuing the Clobetasol for the few days until I saw her. She noted that Clobetasol is a steroid (cortisone) and that it had thinned the tissue a bit. One of the little cherry angiomas (innocent red spots we get in various places) was the source of the bleeding and she said switch to 1-2 times a week. I now use it once a week and everything is fine. That "7-12 weeks" is advised generally, I suspect, but in my case I didn't need to use it that long before switching to a maintenance schedule.
The 10 seconds of pain from the biopsy to get the Dx was well worth it. Relief after starting the Clobetasol was swift, I'm happy to say!
Prairie gal
I forgot to say I had a follow-up appt. with a Dermatologist about 3 months after starting the Clobetasol. She confirmed what I had read: Lichen Sclerosus (LS) is "not uncommon for those who have autoimmune problems."
Be aware, everyone, and don't wait to see your GYN if you have unresolved burning/irritation. I knew my symptoms didn't seem to be from a yeast infection, since I've had 3 or 4 of those. I should have seen my GYN sooner, but the burning wasn't all that bad. If LS is left untreated, horrible things can happen. I went online and saw some much too graphic pictures when I Googled images for Lichen Sclerosus.
Prairie gal
Prairiegal -
Thank you so, so much for your reply. I am so happy to know that I am not alone in this. That is what my problem is mostly is just burning and irritation. And same here - they keep saying it is a yeast or bacterial infection and I know that is not it because it is not the same. This really does seem skin related and not infection related. They've looked at and testing me for everything from yeast to STD's (SAY WHAT?! Explain that one to my husband!!!) but I am all clear except for this terrible skin irritation. It is so hard to describe - mostly I am red and burning like a rug burn and I have white patches but they don't seem to hurt like the red inflammed areas. It is just so frustrating!
But thank you so much for the news about the biopsy - you'd think after having a baby I wouldn't be that nervous but I am!!!
Quote from: Prairie Gal on May 13, 2010, 11:44:21 AM
I forgot to say I had a follow-up appt. with a Dermatologist about 3 months after starting the Clobetasol. She confirmed what I had read: Lichen Sclerosus (LS) is "not uncommon for those who have autoimmune problems."
Be aware, everyone, and don't wait to see your GYN if you have unresolved burning/irritation. I knew my symptoms didn't seem to be from a yeast infection, since I've had 3 or 4 of those. I should have seen my GYN sooner, but the burning wasn't all that bad. If LS is left untreated, horrible things can happen. I went online and saw some much too graphic pictures when I Googled images for Lichen Sclerosus.
Prairie gal
I had the biopsy also and it was not a big deal. My treatment is the same - cortizone cream.
Tuckerdog
Hello All...
I think I may have this miserable condition too. For the past couple of years every 6wks or so I get intense itching/soreness down below front and back (no discharge) I have been to my GP but they don't know what it is and say the skin down there does not look typical of LS ??? they mentioned it might be dermatitis but I changed powders, soaps etc to non-bio/FF but it had no effect ??? I have so many issues with the SjS that I only tend to go and see the docs with the most problematic of symptoms., so I have not persued it, I have already been referred to a cardiologist and a orthopeadic surgeon so I feel like I bothering them Too much already ::).
When this thing flares up with me I have noticed that I am very dry down there and the skin is also a bit crinkly....so I am not sure whats whats, (altho I have no trouble in getting in the mood-if you get my meaning)
Steroid cream does not seem to help much, in fact if there is any lubrication around that area at the time of the symptoms it seems to itch more, so I have been just putting up with it, at some stage I am gonna have to get it sorted, its horrible, yet another thing to deal with >:(
Just thought I would share my story ;D
Take Care
Paula
An old topic, but for me, a new illness. Prelim diagnosis today, follow up with specialist tomorrow. The pain, itching, and tearing, peeling skin are enough to drive a person insane.
Soooooooo very glad, simply to know I am NOT ALONE. :)
Unsure if anyone will read this, as it is an old thread, but I am certain this is at least partially related to SS (at least the immune-system component, anyway). That said, I send my hopes that those dealing with this are finding comfort, and a solution.
I just wanted to follow up on this in case anyone should look this topic up - it turns out that, in addition to LS, I apparently was suffering from some atrophy down there as a result of hormonal changes thanks to perimenopause (yay me, groan). I was prescribed Premarin cream and MAN, what a difference! The clobetasol I was prescribed for the LS helped clear up the ?plaque? I had, but didn?t relieve the awful burning, stinging and dryness I was having down there. The Premarin has made all of those symptoms disappear! From time to time I will get a little sore down there - I usually notice it after I urinate - and then I will realize it is time to apply more Premarin cream. I also have taken other self-help measures including: Tom?s body wash (scent and dye free) for washing down there, Seventh Generation toilet paper that is free from bleach and perfume, and I make sure to wear cotton undies and unscented cotton pads and panty liners.
This post was from 8 years ago and I had already been suffereing for a while beforehand - that put me at 39 years old - I would have never guessed it was perimenopause! I suffered for years before getting the Premarin! So, don?t dismiss hormones as a possible cause if you are suffering from this horrible condition!
So sorry to hear this, my sister who had ovarian cancer had this at the end stage of her disease, however it is not associated with ovarian cancer...I think that her system was truly just overloaded from chemo. She did find some relief with a prescription cream that was prescribed to her by her dr though...
Thinking positive thoughts for you and hoping you can find some symptom relief.