How are others coping with this condition? I have been fighting this for three years and am beginning to have doubts about ever getting some long lasting relief. Anyone care to share any of their success stories with me? Would greatly be appreciated.
What treatments have you been using so far? Are you carrying them out correctly or missing doses? This is long term, but you need to treat yourself as the most important thing in the world to cope with it!!
I have been dealing with it for years also, but only diagnosed 1 1/2 years ago. I have used Clobetasol with decent results, I think the estrogen cream aggravated my fibroids, and I am currently getting relief with emu oil, bought at my local health foods store. I also used to use topical Benadryl to ease itching and swelling, and added Cetaphil as a moisturizer.
oahulady;
I was diagnosed with L.S. in 2004 after being treated for yeast infections for about a year. I finally requested a biopsy because I knew I had something worse than a yeast infection. I have used Clobetasol and many other creams and ointments over the years. I phoned Grandpa’s Pharmacy, a compounding pharmacy, in Placerville CA. I was desparate-nothing was helping. Grandpa Bill was quite familiar wth the disease and had compounded a pill consisting of all natural ingredients with no fillers. Also told me to take B-12, 1000mg and Alpha Lopic Acid, 250mg. Since the L.S. was so very bad, he told me it might take three to six months before I would really get relief. It did take six months. I also use the Clobetasol 3x a week for no more than two weeks at a time.
I also have two younger sisters with the same problems (yeast infections). They live in the midwest and finally went to the Mayo Clinic doctors and requested a biopsy and sure enough they also have L.S. The doctor was very surprised to learn that three women in one family have L.S. We are not young women, I am 81, one sister 79 and the other 75.
We three are greatful that we did not have have this disease when we were young as our lives, we feel, would have been ruined. Hope you continue to have success in your treatment of this disease. If I can be of any further asssistance to you please feel free to e-mail me.
CJC
Hi ~ I read your post with?great interest. I was diagnosed with lichen sclerosis just a couple weeks ago, and one area that was biopsied came back positive for high grade squamous dysplasia. Aldara was prescribed for that, and Clobetasol for the LS. I haven’t started the Clobetasol, and am very reluctant to do so, since?practically all of my vulvar/perineal area is affected, and I?am concerned about possible side effects.?I am leary of Protopic, as well, since reading reports of a cancer connection, although I have a friend who’s used it with good results, and no apparent side effects.
Have you read the article?by a nurse who takes pregnenolone, bee propolis, and melatonin for hers? ?I’d like to know more about your treatment, and how it’s worked. I’d so appreciate hearing from you. Thanks ~ Lynne
-----Original Message-----
From: CJC lsclerosis-cpt4512@lists.careplace.com
To: densangel7@aol.com
Sent: Mon, 4 Aug 2008 7:31 pm
Subject: Re: [lsclerosis] Lichen Sclerosis
Lynne,
Where do you live?
Kristin
From: LynneB50 lsclerosis-cpt4512@lists.careplace.com
Reply-To: LynneB50 lsclerosis-cpt4512@lists.careplace.com
To: kristinsong@msn.com
Subject: Re: [lsclerosis] Lichen Sclerosis
Date: Wed, 06 Aug 2008 17:09:34 -0400
Hi Lynne,
Thanks for writing and good luck! I am very interested in alt. medicine and
I have studied it and been to many practitioners. I would suggest
interviewing and asking friends about Naturopaths (Natural Drs.) in your
area. They need to have experience treating auto-immune disorders, which LS
is.
My Naturopathic Dr tested me food allergies, b/c eating foods you are
allergic to causes inflammation. You can have food allergies where your
body reacts in a non-lethal way by giving you stomach cramps, running nose,
headaches, etc, b/c your body sees that food as the enemy.
So, I have stopped eating gluten, dairy, eggs, and soy, all of which I have
tested allergic too. I have been eating organic, fresh whole foods and cut
out the refined flours, sugars and fats.
Also, she put me on many anti-inflammatory supplements - good quality fish
oil, curcumin, and homoepathic drops.
With LS,we need to stop inflammation. I am happy to report that the skin in
the vaginal area looks and feels much better - no pain, no burning. My
biggest concern in the fusing, which is still happening to some degree.
I have learned to look at illness as a wake-up call. I have been asking
myself, what in my life needs to change for me to heal? What is my body
trying to tell me? Healing is not using cremes alone - it’s not using
supplements alone - it’s taking responsibility for ones health and life.
THis is what I have found works for me.
Kristin
From: LynneB50 lsclerosis-cpt4512@lists.careplace.com
Reply-To: LynneB50 lsclerosis-cpt4512@lists.careplace.com
To: kristinsong@msn.com
Subject: Re: [lsclerosis] Lichen Sclerosis
Date: Mon, 04 Aug 2008 22:50:09 -0400
Kristin ~ thanks so much for answering, and for your advice. I’ve been unable to find a naturopath anywhere near, and?know no one who has any recommendations.? I’m going to have to research other kinds of doctors/practitioners,and have even though about accupuncture. I sincerely hope that I don’t have food allergies to things like dairy products, since I had gastric bypass 8 months ago, and do so well with yogurt and cheeses. Any way, thanks for the reply, and should you know of any unusual resources, or have any more advice, please, please pass it along. Lynne
-----Original Message-----
From: Kristinm lsclerosis-cpt4512@lists.careplace.com
To: densangel7@aol.com
Sent: Wed, 6 Aug 2008 2:02 pm
Subject: Re: [lsclerosis] Lichen Sclerosis
Kristin ~ I live in north Jersey.
-----Original Message-----
From: Kristinm lsclerosis-cpt4512@lists.careplace.com
To: densangel7@aol.com
Sent: Wed, 6 Aug 2008 6:21 pm
Subject: Re: [lsclerosis] Lichen Sclerosis
CJC, I really appreciate your information, and would very much like to contact the pharmacy you mentioned to see if he could compound something for me. I have burned a hole in my stomach taking supplements prescribed by my naturopath, which included Yun nan bai yao (to stop heavy fibroid-induced bleeding), a Chinese herbal preparation which Wikipedia says is manufactured by the Chinese government and the formula is a state secret guarded by a Chinese army general!! So, I am all for alternative treatments, I just want to know what they ARE.
I have wondered if there is a genetic component to this disorder, or any other social or demographic common denominator…I also have SLE (lupus), which strikes more women than men, and more black and hispanic women, and I am 3/8 hispanic. So I was very interested to hear that you and your two sisters all have LS, and I hope there is a statistical repository for that information being maintained somewhere. Perhaps that Mayo Clinic doctor has already entered the data.
I don’t know how to e-mail you directly, so I will ask to add you to my Friends list, and see if we can contact each other that way.
Yes, this is a devastating disorder, and I am so saddened by all the younger women and men I see placing posts on this site and ls-bxo.org. I hope LS/BXO makes it onto the research grant lists sometime soon. It doesn’t seem that much is being done at this point.
Please watch for my “Friends” contact…Thank you, CJC, and everyone else for your informative and exploratory posts!