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22 and terrified of diagnosis

Posted , 14 users are following.

Jess415
Jess415

My backstory:

Two years ago I got a minor tear at the 6 o'clock position from sex. It was a penetrative injury and I remember exactly how it happened. Over the past two years I've seen and reseen the gyno as it keeps opening. The tear is small, like a papercut and while I've asked for surgery, they insist on the estrogen cream. While estrace cream has helped, the tear continues to open. 

For the past 6 months I've also had consistent itching on my vulva (on the labia minora). I was once diagnosed with a yeast infection, and another time a small tear developed where the skin itched. 

Now: 

After having my tear re-open recently, and persistant itching, I went to the gyno again. This time, she noticed some whitening patches of the skin and did a biopsy that will be tested for a range of skin disorders, including Lichens Sclerosus. Note: the tear may be a totally seperate issue, or related, it's unclear.  

After spending all night Googling and examing myself, I am fairly certain it's Lichens Sclerosus and I am terrified. I do have a very small fused area on my labia minora (something that the gyno didn't even mention). And the white patches with surrounding red areas is also very familiar to what I have. The small fused area is also where I developed the tear, and have been using estrace and vaseline on it. 

My sexuallity is so important to me. I'm 22. I'm only beginning to discover the joys of sex and I'm terrified of some of the more serious fusing, atrophy, tearing, etc. that will destroy my vagina. 

I will have a diagnosis my Friday and in the meantime have been perscribed [u]Clob .05%[/u]. However, I'm scared to use it especially as I am still healing from the biopsy. I haven't been able to focus at work, sleep, or eat. I'm petrified. 

I need some hope that it's possible to treat this disease and prevent the more horrific side effects if it's caught early. Reading through this forum, I've only found stories of obliterated vaginas, leaving me in tears and scared. 

0 likes, 28 replies

28 Replies

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  • Jess415
    Jess415

    Posted

    I have been perscribed Clob without a definitive diagnosis. 

    I think I have a couple white patches, but they're very minor. I'm worried of using the Clob on "healthy" skin. Any advice? 

    My phramasist called me to make sure I'm careful with the cream, which scares me a bit but I know it's a common perscription for LS. 

    Also, I have a very large purple patch from after my biopsy where they sprayed some solution whiched burned my skin just before injecting me with a local anesthetic. I'm assuming the dark purple is from the procedure? 

    • Chrisy
      Chrisy Jess415

      Posted

      You should get the dark patch checked out with your GP/dermatologist/gynae or whoever is your preference.  Do not assume things with this condition.  Only treat active areas of your ls.  You may benefit from listening to Dr. Goldstein's webinair, (link to this found in second pinned post of this site entitled 'New to Ls start here'.
    • Morrell1951
      Morrell1951 Jess415

      Posted

      You'll find Dr. Goldstein says clobetasol ointment is preferable to cream. Som women here react to the extra ingredients in the white cream. I read some info that said LS patients tend to use too little clob, so most of us err on the side of under-treating. Use it on the affected areas and once you're graduated down to twice a week and things are settled, still use it on the same areas.
  • bettie72513
    bettie72513 Jess415

    Posted

    My vulva specialist has a step down regimen for LS.  He starts with Clob but it is so strong and can tend to weaken/thin the skin so after some weeks he switches to Triamcinolon ointment 0.1%. After about 4-6 months on this you go on maintenance of a 2% hydrocortisone cream.  I don't know if we're supposed to give out actual doc's names, but he was at Mayo's in AZ and is now in private practice in the Phoenix metro area.  Known as a national expert in all things vulva and is helping me with chronic (sp?) irritation "down there" as well as LS. Most ob/gyns only know about Clob for LS.  More need to research this disease to help their desperate patients.  Good luck to you and all of us.    
    • Guppy007
      Guppy007 bettie72513

      Posted

      Your chap sounds good! I like that he is thinking long term, rather than just doling out the Clob...its a pity more arent like him.
  • Jess415
    Jess415

    Posted

    Ooof! 

    I heard back about my biopsy that tested for multiple vulva-vaginal conditions, including LS. To quote the voicemail I received, "There's nothing to be concerned about. You came back negative." 

    I have a follow-up on Thursday since my gyno wants to check out my stitches and talk next steps. I'm worried that: 

    1. The biopsy DIDN'T test specifically for LS. 

    2. If I did, and it is in fact negative, I still have symptoms that are undiagnosed and do appear to be LS. 

    Anyone have a false negative biopsy for LS before?

    • judy02533
      judy02533 Jess415

      Posted

      Jess, I had a biopsy that came back neg. for LS about 3 weeks ago. Like you I was being treated with clobetasol although I hadn't had the biopsy to confirm LS.  I was told, I believe Morrell on this forum, that if you are being reated with a steroid on the white patches and the biopsy is taken from that area, you get a neg biopsy.  Was the biopsy taken from the area being treated?  Mine was taken from the area treated.  So although my biopsy was negative, with all my symtoms  I believe I have LS.  I have an app't at a vulva clinic in Sept. and I'm sure I will have another biopsy.  
    • renee77108
      renee77108 Jess415

      Posted

      There can be inconclusive results...if the sample taken was not a good sample or did not hold up to the different tests.  I've had 2 biopsies in my mouth for a different form of lichen with two inconclusive results as the tissue did not hold up to all the tests they did on it.  So question your doctor about the results when you have your follow up. Hopefully it is as they say...negative.  Hope so!
    • Morrell1951
      Morrell1951 Jess415

      Posted

      In the Manual of Outpatient Gynecology edited by Carol Havens, Nancy D. Sullivan, "False positives and false negatives do occur". I forget where I saw the remarks about buopsy after a period of treatment. It might even have been in Dr. Goldstein's presentaion.

       

  • virginia45494
    virginia45494 Jess415

    Posted

    I have had LS for 12 years.  Please do not use surgery until you have ruled every other option out.  Regardless of what the diagnosis is, you can use the natural remedies that renee describes to keep the area clean and moisturised - give the area support to heal.  All the best xxx
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