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  1. #1
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    Vulvar Lichen Sclerosis


    I was wondering if anyone else out there has also been diagnosed with vulvar lichen sclerosis (VLS)? The specialist I am seeing recently diagnosed me with this, in addition to IC and VV. I have to admit that I can't help but wonder if there is a common denominator with all these conditions.

    Dx IC
    Dx VV
    Dx PFD
    Dx LS
    *All diagnosed in July 2010
    Dx Anxiety Disorder, Spring 2005

    Treatments:
    Hydroxyzine
    Nortriptyline
    Elmiron
    IC Diet
    Bladder Instillments
    Triamcinolone
    Topicort
    Bactroban
    Lidocaine
    Physical Therapy
    Mind-Body Relaxation Techniques

    "God, grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference."

  2. #2
    ICN Member maryla's Avatar
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    Moon,

    What are your symptoms of VLS?? I have never heard of it??

    hugs and blessings
    MARY


    Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

  3. #3
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    Mary,

    My two main symptoms, that I am fully aware of, are itching and redness between my inner and outer labia. However, upon a closer look, I have scarring in the area too, in addition to some indication of fusing. I always thought I was just highly prone to yeast infections, and my stepmother commented some time ago that as a child I had a lot of yeast infections (which subsequently caused me to remember that I did used to scratch down there and my grandmother would apply Vaseline). But, come to find out, it was VLS that was causing the itching.

    I should, and do, feel relieved that my doctor caught this. If it had been left untreated, the damage would've been irreparable. But, I definitely don't see myself in the same light anymore. I too had never heard of it and apparently it's not very common.

    Best Wishes!

    Dx IC
    Dx VV
    Dx PFD
    Dx LS
    *All diagnosed in July 2010
    Dx Anxiety Disorder, Spring 2005

    Treatments:
    Hydroxyzine
    Nortriptyline
    Elmiron
    IC Diet
    Bladder Instillments
    Triamcinolone
    Topicort
    Bactroban
    Lidocaine
    Physical Therapy
    Mind-Body Relaxation Techniques

    "God, grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference."

  4. #4
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    Moongirl, my 5 year old daughter got a "possible" diagnosis of lichen sclerosis last week. I'm so unhappy about this. She's been uncomfortable for longer than I can remember and for awhile we just thought she didn't want to go to bed at night. The doctor put her on hydrocortisone cream and said to come back in 4 weeks. She said after one week that it's making her feel worse. How cruel is the world? It's bad enough I have IC and Sjogren's, how could this happen to a small child? I just read that lichen sclerosis is most likely autoimmune. Please let me how you're doing with your treatment and I'd also love to know what doctor you see.

    Best,
    shortstuff

  5. #5
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    Hi Shortstuff,

    First off, let me say that I am sorry to hear about your daughter. It is in a sense cruel for such a young child to have to deal with this sort of thing. However, if in fact the diagnosis is correct, then it's a good thing that they caught it while she was young. The longer is goes undiagnosed, the more damage is done. I have seen what this can do if left undiagnosed (in a 60 year old woman), and I know what it has done to me. I know it's a bit overwhelming for you at this time, but I hope you are able to find some comfort and relief in the fact that they may have detected it early.

    My treatment is going pretty well. I am also on a hydrocortisone for my LS, in the form of an ointment, which I'm assuming is what your daughter is on. It has reduced the inflammation in that area for me, and has really subdued the itching. There are still sometimes that I do itch, but then I just use a little more of the ointment on that particular spot, which seems to help. I also use it twice a day, morning and night. I'm also on an antihistamine, which is to help with the autoimmune dysfunctions. What kind of regiment do they have your daughter on? My doctor is located in Pennsylvania, and if you'd like, I can PM you his information.

    All the best!
    ~Moongirl

    Dx IC
    Dx VV
    Dx PFD
    Dx LS
    *All diagnosed in July 2010
    Dx Anxiety Disorder, Spring 2005

    Treatments:
    Hydroxyzine
    Nortriptyline
    Elmiron
    IC Diet
    Bladder Instillments
    Triamcinolone
    Topicort
    Bactroban
    Lidocaine
    Physical Therapy
    Mind-Body Relaxation Techniques

    "God, grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference."

  6. #6
    ICN Member
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    Yes, I'd like your doc's info although most likely we have to stick with the pediatric gynecologist. There are only 2 in the state of NJ and none that I could find in New York City. Yikes!

    As of now she is supposed to do a sitz bath 1-2 times a day. Honestly we are lucky to do it just the one time. Then we apply hydrocortisone 2.5% cream. It's been 3 weeks since the appointment and still tonight she said the medicine was making her feel worse and that she wished our follow up was tomorrow instead of next week. It makes me feel horrible. I would take all of her issues just so she could have a perfect little life.

    My inbox is full and I don't have time at the moment to clean it up so feel free to just email me at kerryk11@yahoo.com. Thanks for replying so quickly. It's helpful to know that you've had success. I'm just praying my daughter will find relief soon!

  7. #7
    ICN Member crkshnks79's Avatar
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    I def think there are connections ..... I wonder that alot myself . I also have been diagnosed w Lichen S. , it has fused part of my inner labia to my outer labia , I have intense itching and burning , my skin down there is always bright red ! I have a hard time distinguishing the difference in symptoms between Vulvodynia and LS . What really gets me is how Ive seen so many gyn's before my IC diagnosis , and that NONE OF THEM saw this or knew there was a problem ?! I thought I always had yeast infections for yrs . I hope you feel better , try a cool oatmeal bath , I do that twice a day when my symptoms are really bad


    Lauren

  8. #8
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    Moongirl, I got your email and owe you a response. Been having computer problems lately. Daughter had follow up yesterday and I think the doc has no idea what's going on. Said time will tell. Feel like that's not good enough for my daughter. Appreciate your info and will be in touch in next few days! Thank you!

  9. #9
    ICN Member
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    Is it possible that you may not have IC and just have the lichen sclerosus that is causing similar sx's? My docs tried to diagnose me with IC, only to realize 3 months later it's just LS causing issues to my urethral opening. Just a thought...

  10. #10
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    I too thought I had IC but was diagnosed with Lichens Sclerosis. My main symptom is pain at the opening of the vagina and urethra.

  11. #11
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    Hi Moongirl,
    I was diagnosed with Lichen Sclerosis about a year ago, but it seems to be easily controlled with steroid creams; it hardly bothers me anymore. I hadn't ever thought of a connection between that and my IC. I wonder how many other folks have this....

  12. #12
    ICN Member Belle Dawn's Avatar
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    My boss was diagnosed with Lichen Plantus...that means she gets a rash from time to time all over her body...you get it by exposure to photo materials..exposure to chemicals in the hospital....a whole slew of things....
    Good Luck!
    Belle Dawn
    Readers Digest Version of my Urinary History:Urinary Tract Infections since age 19
    VCG x 2
    IVP x 1
    Ultrasound of kidneys x 3 (currently have kidney stone)
    Dilation of Uretha x 2
    Diagnosed with IC 2008 age 48
    Cystoscopy with Overdistension of Bladder x 4
    2008, 2009, 2010 and 2011
    First Overdistension of Bladder had great results, last one I had pain >10 for 30 days
    ...............................................................
    Current Medications
    Elmiron, Elavil, Lyrica, Klonopin, Tagamet,
    Macrobid (PRN) for infections, Glucosamine with Chondroitin, Fish Oil, Calcium with D, Acidophillus,
    Baking soda 1 tsp w/water PRN, Prelief, Estrace Cream, Combipatch, Fiber tabs, Diastat (for flares)
    .................................................................
    Did Not Work for Me
    Detrol, Vesicare, Toviaz, Goldenseal, D-Mannose, Quercitin

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