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Lichen Sclerosus & Menopause Lichen Sclerosus & Menopause

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Unread 10-11-2006, 08:57 PM
Lichen Sclerosus & Menopause

Hi All,
I have been doing research on a condition that I've had on and off for years. I get swelling and irritation on the left side of the opening to the vagina. I kept wondering why the gynocolgist wanted me to use cortisone cream but she never talked about the DX. From the reading I have done I now feel that is why I've suffered with this raw and burning feeling for years. It says that it becomes a skin condition and the lose of estrogen and sometimes a thyroid disorder makes it worse. And using progesterone cream with the cortisone will help. I am so flustrated to have dealt with this so long and have never been told by one doctor that this condition needed to be treated by cortisone for weeks and sometimes months. I'm sure all the times I bought over the counter yeast medication is was making the condition worse. And the article states that I shouldn't even use soap. I hope no one else has to suffer the way I've suffered with this condition. Thanks for letting me vent.
Any input would be greatly appreciated.
Trish M.
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Unread 10-11-2006, 11:19 PM
Lichen Sclerosus & Menopause

(((Trish))) Sorry you have to deal with this. If what you have is lichen sclerosis, testosterone cream has been used with great success by some women to treat the condition. Has your DR mentioned that option to you?

Unread 10-12-2006, 06:21 AM
Lichen Sclerosus & Menopause

Linda I will certainly tell my doctor about this. The last time she had me use cortisone cream she said that if the condition didn't improve that I would need a biopsy. I was lucky that the cortisone cream helped the condition but she never indicated why to use the cortisone. She knows I'm a reader and would understand the condition and now it makes sense why this has never truly gone away. I have been using estriol cream and it has helped some. Thank you for telling me about testsoterone cream. I have asked for this several times but she didn't want to give me a rx. It's strange doctors always say that vaginal creams are not system but when I ask for testosterone vaginal cream she doesn't want to give it to me. Now when I see her I will be armed with some more information. Thanks for taking the time to help out.
Thanks again, Trish
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Unread 10-12-2006, 12:29 PM
Lichen Sclerosus & Menopause

I have dealt with lichen sclerosis since my first pelvic exam at 23 (and had a biopsy too - yikes!). I use a steroid cream when needed, and I'm very careful about the soap I use - only Ivory, no fabric softeners in my laundry, no perfumes or additives if it might accidentally end up in that sensitive area! I have little trouble with it, only when I've been on my period constantly (which seems like all the time these days). The steroid cream helps a lot, and I'm very surprised that your doc is hesitant to prescribe it for you. I'm only supposed to use it sparingly, because it does thin the skin when used a lot. Hope this helps!
Unread 11-29-2006, 11:39 PM
Lichen Sclerosus & Menopause

Hi - I was diagnosed with Lichen Sclerosis about 6 months ago through a punch biopsy. I am pretty sure that I have had it for years though. I kept using yeast infection meds to cure it, but when it started to get REALLY bad, I decided to go in. The dr. tooK one look and knew what it was - said it was very rare and gave me a print out about it. Then I came home and got on the internet. There is a lot of info. Steroid cream seems to be the only really accepted form of treatment that works. Testosterone cream treatment was thought to be helpful in years past, but it is no longer prescribed by doctors for this condition because it is thought to actually be harmful to the condition. The condition is not cureable. There is some debate as to whether or not it is autoimune in nature, but I have recently been reading that there is some link to the thyroid. I have other autoimune diseases (which come in clusters) so it wouldn't suprise me if it turns out to be true. So far, I have had some sucess with a cream called clobestal (it's a strong steroid). You start out using it 2 to 3 times a day and gradually try to taper off to a point where you are keeping the disease under control. Everyone who has this has a different threshold. I have to used the cream 1 to 2 times a week, once a day to keep it at bay. It has thinned my skin dramatically (not sure if that is because of the cream or the disease). I am now affected in both the vulva area and the anal area. Sex is very uncomfortable because I tear. Bowel movements are painful for the same reason. My inner labia are almost gone from the shrinkage that takes place. I had no idea that this was happening. A sure tail sign of the condition is that the affected area turns white and itches... then it starts shrinking and sometimes turns hard. I am hoping that it will not attack my clitoris. I am sorry that you have this condition. It really is terrible. Good luck to you, and if you ever need to talk to someone about it, I'm here for you!
Hug - Val
Unread 03-16-2007, 05:46 PM
Lichen Sclerosus & Menopause

valpal how do you deal with the painful sex issue? When the skin tears so easily it make you tense even before things get started! Is there anything you found to prevent the tearing?
Unread 03-16-2007, 11:17 PM
Lichen Sclerosus & Menopause

My doctor has me using petroleum jelly between clobestol treatments to help keep the area moisturized. I hope you don't mind me being blunt here... My husband and I have had to be very creative with our sex lives. Sometimes I am not physically able to have intercourse. So far, manual stimulation has not been painful for me. Luckily I married a guy who enjoys experimentation. We have found that if I am able to orgasm prior to intercourse, it is much more comfortable for me. Maybe it relaxes me mentally or physically, or lubricates... I don't know. My doctor has suggested using a personal lubricant called Astroglide. I have not tried it yet, but you can buy it over the counter. It is supposed to last longer than K-Y jelly which has always been our stand by. Since I am unable to have intercourse for any great length of time, I think my husband now feel that some of the pressure to perform is off of him. This is a good thing, right? As long as we are both able to enjoy sex and climax, intercourse is not required.

I hope this helps. I am sorry you have this. It *****, I know. I am here for you...
~ Val
Unread 03-17-2007, 06:32 AM
Lichen Sclerosus & Menopause

Val, thanks for your response and yes I appreciate you being blunt. My husband and I are doing pretty much the same thing. I was warned about the petroleum jelly by a doctor (seen a few). Apparently the concern is it helps breed infection because unlike Astroglide or KY it is not water soluable and does not break down. The frustrating thing is what doctor do you believe they all seem to have different approaches to the disease. I was wondering what type of specialist you see when you have a bout or in keeping your LS under control? Thanks I really do appreicate you posts!
Unread 03-17-2007, 11:47 AM
Lichen Sclerosus & Menopause

I wondered about that petroleum thing too, so I am really careful to keep the area clean before I apply it. So far, so good.... I know a lot of ladies get yeast infections with LS because of the steroid treatment. So far I haven't had to deal with that either. I see a vulvar pain specialist. She has been amazing for support and very helpful with other medical issues I am having. I don't take HRT, do you? I am actually considering it, even though she and other doctors agree it is best to try to cope without it. Since this condition is sometimes related to menopause (although I started having it in my 20's) I wonder if HRT might help. I also wonder if it would help with the other medical issues I am having right now. Prior to being diagnosed with this, I thought I was having constant yeast infections and my regular gyn could never find anything wrong. Finally, I got my diagnosis because I had to see a different gyn in my clinic because my usual one was on vacation and she found the LS immediately. That gyn referred me to the pain specialist I see now. When I have flare up, I call her right away if I can't get it under control. I am so affraid that it will progress further! I email her and she sees that I get in right away and then always has me follow up at 6 weeks. So far, everytime by my followed up, the condition has been controlled. Then she has me come back in 6 months. Every other doctor I have seen for other problems has not been familiar with this condition with the exception of my dermatologist (I also have rosacea). They are funny, you tell them you have the disease, they nodd their head like they know what you are talking about and then usually excuse themselves (I know they are running back to their med. dictionary, lol), and then when they return, they know so much more about it. A dermatologist would be a great dr. to see too, but I would call ahead to see if they are familiar with the condition and how often they treat it. Hope this helps!

Unread 03-17-2007, 01:36 PM
Lichen Sclerosus & Menopause

When I was young I used vaseline and from all my research I feel I caused myself a lot of bacterial infections. I wasn't aware of how vaseline could harbor bacteria. The doctorl who did my hysterectomy told me he felt I contributed to my PID by using the vaseline for so many years. And the GYN I have had for eight years is totally against it.

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