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Newly diagnosed for LS and auto-immune disease.

Posted , 10 users are following.

Kat7201
Kat7201

Hi,

Thought I'd start a new post as there doesn't seem to much recent activity on here.

I am newly diagnosed with LS and auto-immune disease. To be honest, the auto-immune diagnosis is a relief as I've felt like a hypochondriac at times over the past 10 years.

Anyway, I was just curious to hear from anyone who has both, not that it seems to make any difference to symptoms. LS is still frustratingly painful. I've been in tears on numerous occasions when I just can't stop the itching and want to sleep.

Look forward to hearing back and sharing experiences and treatments.

1 like, 8 replies

8 Replies

  • Lodge
    Lodge Kat7201

    Posted

    Hi,

    I was diagnosed with Hypothyroidism in 2007 and then the problems down below started to develop and after lots of GP visits being told all was fine, I was eventually diagnosed with LS in 2011 by a gynaecologist. By then everything had virtually disappeared (as in labia, clitoral hood) and intercourse was extremely painful (which is why I originally went to the GP) and has been non-existent for the past four years. It is all very upsetting:(

    • Kat7201
      Kat7201 Lodge

      Posted

      Hi Lodge. Sounds very familiar, I have been diagnosed with Hashimotos Thyroiditis too. That was picked up by a new doctor noticing my Vitiligo (apparently also autoimmune), and testing my antibodies at the appointment I made for LS! Nothing if not thorough, she has been brilliant. I totally understand the intimacy side of things. Far too painful and, yes, upsetting. Thank you for replying.

  • Nancy_K_B
    Nancy_K_B Kat7201

    Posted

    Good morning Kat and welcome!

    OH my, there are plenty of us speaking up daily... not sure why you haven't found messages and discussions. I've been on here for about 2 years and am so grateful for this community of women and men who help each other with this LS. I think I spent 20 hours a day for days on end reading on this website forum back at least 6 years.

    Kat I'm now 73, and supposedly retired. When I diagnosed myself courtesy of Google, I went on a "rampage" to figure this thing out. Any websites I found mentioned that they didn't know if LS was an autoimmune or not. I finally found one article that did.. anyway it is now generally accepted to be an autoimmune disease.

    Let's get you comfortable as fast as possible. Here are the two articles I created for myself and anyone here from what I discovered trying to follow my nose (I'm a landscape architect not a doctor). IF you take the time to read through them you'll end up knowing more than most docs. I only used those investigative MD's and ND's to built out a protocol to help us all.

    OH, by the way, apparently over 30% of LS sufferers are also hypothyroid (me too).

    Here's the patient website link to my discussion and nutritional support discoveries:

    https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033

    https://patient.info/forums/discuss/nutritional-support-protocol-for-autoimmune-diseases-636963

    See you on the other side of a bit of reading.... smiles.

    • Kat7201
      Kat7201 Nancy_K_B

      Posted

      Hi Nancy, wow you've been busy and I've got a lot of reading to do! Thank you so much.

      Maybe I didn't look hard enough into all the threads to see daily postings. Glad you replied to this. Yes, I've been confirmed with hashimoto's too.

      I'm curious to know if there's triggers, as I had 2 nasty bouts of shingles before any of these symptoms appeared, (apart from Raynauds, mentioned below by Sue, which I've had for years.

      It's all beginning to link up. I look forward to reading your links and drawing on your experiences. 🙂

  • sue162
    sue162 Kat7201

    Posted

    Hi Kat,

    About the time of my L S diagnoses three years ago I have Raynauds and like you have felt very tired as well, arthritis seems worse as well. I use the clob twice a week for maintenance but never none per week. My Raynauds I wear gloves alot.

    • Kat7201
      Kat7201 sue162

      Posted

      Thank you for replying Sue. The fatigue is frustrating isn't it? I can't seem to get any umphh! 🙄

  • cynthia40883
    cynthia40883 Kat7201

    Posted

    Hi, My best recommendation for you and others who have crazy itching, like me, with LS, is antihistamines. i take a small piece like 1/4 at night. Helps tremendously. If it makes me tired, no problem. I am going to sleep anyway. I always spray after urination w spring water also.

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