Newbie searching for answers

Posted , 5 users are following.

Hi all

I just joined this site and I am sure glad I did. So many questions, but for now I need to continue reading what is here.

A little background . I was diagnosed almost a year ago with LS after which I freaked. I had endometriosis so bad infertility led to hysterectomy at 40. Now at 47, I have hashimotos, gluten sensitivity and osteoarthritis. Yeah me. None of those things scare me but this LS diagnosis is overwhelming.

I hope to learn a lot, learn what questions to ask, what triggers a flare up. Anyway just wanted to say hi and thanks.

0 likes, 7 replies

7 Replies

  • Posted

    I am wondering what all of us have in common to have been diagnosed with this disease.  I actually have LS around my anus now too...only adding to the pain, embarassement, etc.  Does anybody also have herpes?  Other auto immune diseases?


    • Posted

      I have 2 other autoimmune diseases: fibromyalgia and interstitial cystitis.  I've read that people who've suffered traumas in their lives have a greater chance of developing these autoimmune diseases.  For me, I had 2 ectopic pregnancies and almost died during one of them. Car accidents, abuse, etc can also have post traumatic effects.  Experiencing something traumatic can cause your brain chemistry to change because your feelings of being safe are suddenly turned upside down.  Hypervigilance can be a result, which can cause sleeplessness, etc.

      So, anyway for me, I believe my conditions have resulted from my past traumas.

  • Posted

    We have some similarities Denise:  I too have a thyroid problem;  have had a total hysterectomy at 42 due to endometriosis.  Have a gluten sensitivity - non Celiac gluten sensitivity. And LS.  And have to add adrenal gland problems with that as well. 

    ​Due to LS I avoid added sugar,  of course I avoid gluten,  and am limited with dairy (cheese seems to be a sure trigger for my LS) (It is not for everyone the same, so try one thing at the time and see.)   For many watching the sugar intake has mad a big difference.

    ​Earlier I was already on hormone replacement. 

    ​For treatment of LS in first instance I used the well known steroid.  But rely today more on baking soda baths and rinses.  Plus coconut oil. 

    ​I would encourage you to read the various topics regarding LS.  People have come up with good solutions that make living with LS doable.  Though at first it is very overwhelming when you just have heard the diagnosis.  Reading more about it from other people gave me gradually the confidence to place the treatment in my every day life. 

    ​Wishing you well!

    • Posted


      Thank you. I watched Dr. Goldstein's webinar and since I have my annual next week, I want to know why the gyn prescribed a testosterone cream and not clobetasol that everyone is talking about. I am lucky to be in the DC area and I am going to see if I can get a referral to him. I don't think my gyn office has the experience to treat LS. I also keep seeing post about baking soda baths and coconut oil, how does that help.

      I have no itching. Burning when I have a new tear. Tears happen with sex or if I am dealing with my IBS. Recent test say I am perimenopause . I have found that going commando because I prefer thongs.

      I want to fight this and my new

    • Posted

      Darn smart phone.

      My new husband is very supportive.

    • Posted

      Having a supportive husband is very important. 

      ?The baking soda, according to my doctor and nature path, has to do with the pH balance.  My diet connects with that same thought as well.  The coconut oil keeps all from sticking together/fusing. 

      In case you find a gyno who wishes to prescribe Clobetasol ask for the ointment.  It's better than the Clob cream. 

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