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Recently diagnosed in the US

Posted , 9 users are following.

cheryl1818
cheryl1818

I live in Florida in the US & was recently diagnosed.

Are there any US members of the group that would be able to provide me with resources in my state?

Thanks,

0 likes, 18 replies

18 Replies

  • athena93317
    athena93317 cheryl1818

    Posted

    Im in California and to be honest my experience is that most all doctors have very small knowledge on the subject they were telling me its a skin disease when new research says its an auto immune disease I have just done my own research and I keep mine under control I have had much improvement sense I started looking at it as a autoimmune disease I take pro biotic everyday and I stopped eating gluten and I put aloe Vera gel down there every time I use the restroom and I put 45,000 iu vitamin E on at night
  • melissa0
    melissa0 cheryl1818

    Posted

    I agree with athena.  I feel like doctors don't really have enough resources on this disease.  I am in PA and my gyn told me pretty much what I have read online.  I also have vitiligo in the same area so I don't really know what is LS or vitiligo.  Anyway, I also saw a dermatologist and she told me that there is no way I can have both conditiions, it is either one or the other.  Everything I read online and the gyn both say differently so I don't know who to believe and I don't even know exactly where to apply my ointment as everything in the area is white. 
  • Trishspring
    Trishspring cheryl1818

    Posted

    I am in pa. Recently diagnosed. I was given topical steroids. Was told not to worry about it, it's not big deal. I have been reading articles on line of course not sure it's no big deal. My husband tells me to just do what the Dr says and no worries. I am so confused and it is embarrassing to talk to a friend about I am lost.
    • Morrell1951
      Morrell1951 Trishspring

      Posted

      Hi Trish,

      If you've got ointment and not cream, then the doctor has done all there is for a doctor to do, other than check annually for bad cells. But LS can be a big deal or not, depending on which of several levels of severity you have.

      Watch Dr. Goldstein's presentation (peferably with your husband) – it's linkeds in the top discussion here, "New to LS – Start Here". That's all you need to know. Don't go Googling scary photos – those are mostly neglected cases. You have a diagnosis and treatment.

      You've found a great place to discuss the thing nobody in your life wants to hear about. Most of us agree that cutting way, way down on sugar is a huge help. Managing stress is key. If you tend to get yeast infections it's no surprise – LS and yeast go hand in hand (in a bad way). Any kind of oil is helpful. Baking soda baths and rinses are soothing and healing. Don't have friction-intensive intercourse when you're already uncomfortable – it will only make it worse.

      Before menopause LS can go into remission for years. I went undiagnosed and untreated for 40 years. I had several periods when sex was not painful. I had two natural births.

      Hope we can help here. Most of us freaked out after diagnosis, but the sooner you get past that, the better for your stress level. Glad you found us.

    • Trishspring
      Trishspring Morrell1951

      Posted

      Thank you for your response. You seem knowledgeable on the subject. Glad I have somewhere to turn to. I will definitely watch the video
  • lora101
    lora101 cheryl1818

    Posted

    I am amazed on how simular most peoples diagnosis story are but how different everyones condition is.  Also how the doctors act like its no big deal. I am going to a new doctor soon at a teaching hospital so hopefully I can get more answers. I was wondering if a biospsy can be false positive.
    • Morrell1951
      Morrell1951 lora101

      Posted

      I understand a false negative can happen if you've been using steroid cream and you have no symptoms. The biopsy has an appearance under the microscope, no mistaking LS.
    • lora101
      lora101 Morrell1951

      Posted

      I was not using steroids but I did have some pain and burning. But no white patches that I could see

    • Morrell1951
      Morrell1951 lora101

      Posted

      So, you were diagnosed with LS after a biopsy? Safe to say you have it. Not everyone always has white patches. Before menopause they can come and go.
    • lora101
      lora101 Morrell1951

      Posted

      Thanks past menopause so maybe I'm just either lucky or haven't gotten to that stage yet
    • Morrell1951
      Morrell1951 lora101

      Posted

      I noticed my perineum was white and self-diagnosed around age 56.
    • lora101
      lora101 Morrell1951

      Posted

      I notice a burning sensation and blood after sex, my doctor was sure of what it was before biopsy. I had carcanoma of the cervix at 24 so I have had alot of exams . I would have thought one of the other doctors would have seen something. I tore badly with my second baby and then the sitches tore. Reading from this site it makes me think it could be connected and that  I might  have had it for some time. 
    • Morrell1951
      Morrell1951 lora101

      Posted

      I've never tried to count the number of doctors who failed to notice my LS. I think it started at age 22 if not earlier. I was diagnosed at age 62 after an emergency room doc sent me to a gynaecologist who happens to have 1000 LS patients. I had two episitomies and two cervical conizations which I'm sure didn't help.
    • lora101
      lora101 Morrell1951

      Posted

      I hope when iI go to the University hospital they will give me some of the answers I need.  Do you know if I dont have visable symtoms if they will know if the biospy was correct.  Mind you I say that only because I truely dont know what my own anatomy looked like before the diagnosis. My own fault
    • Morrell1951
      Morrell1951 lora101

      Posted

      They look at the skin very closely. It's not so much about the atrophy as the skin. Don't beat yourself up. We need to take care of our emotional health. It's the key.
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