New diagnosis of LS - 30 years old. Any hopeful stories out there?

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I was just diagnosed with LS a few days ago. I have 2 kids and it seemed to have developed while I was breastfeeding my second. I was wondering if this could have triggered it and if there is any hope of going into permanent remission.

The risk of it developing into cancer also terrifies me. If the disease is well controlled does the risk of cancer diminish?

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  • Posted

    If it gives any consolation - you can learn to control LS; LS turning into cancer is rare. Read the various discussions regarding LS on this site.  The more knowledgeable you become the better you learn to control it.  

    In a way you're lucky that you have been diagnosed early.  Many people on this site have been diagnosed very much later in life.  Me being one of them.  However,  I have learned to control it and my life now is almost as good as normal.  

    Watch what you're eating - sugar, alcohol are two biggies for starters and need to be left out.  Some of us thrive with a gluten free diet, some have to also go without dairy.  (cheese is a big trigger for me) (other than sugar)   And try to avoid stress.  

    In addition to using globetasol, you can use coconut oil or emu oil to moisturize down there.  I myself have benefitted from using a baking soda spray after every bathroom visit, dab dry and cover with coconut oil.  And taking baking soda baths.  

    It's very unfortunate that you're having to learn to live with this LS condition, but there are ways to  'conquer' it.  Wishing you well!

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    • Posted

      Thanks for your response - is the baking soda spray simply a mix of baking soda and water? Does that just ensure the area is kept clean?

      It is interesting that you mention avoiding stress. The condition presented itself when my child was four months but flared up and recently (which prompted a visit to the Dr) after a period of intense stress...

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    • Posted

      Baking soda in a Perin bottle (you probably already own one; after giving birth often provided by hospital)  Three pinches, than fill with warm water.  That's it.  

      Originally I started doing this to prevent infection.  After a while I discovered it was beneficial for controling LS.  

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    • Posted

      Hi Mary, you sound as if your lead up to LS was a classic precursor!

      Changing hormone levels...ie pregnancy and breast feeding....AND stress! Intense at that

      After you have managed to reduce the symptoms a bit do sort out some stress management techniques- I am told that meditation can work wonders and "mindfulness" You will be very tired too and lack of sleep doesnt help- you heal better if you can "sleep it off" 

      Cancer is very rare and if you manage your symptoms with the steroids and moisturisers and keep your undercarriage scar free if possible the liklihood is so much less too. Doctors have to tell you of potential risks these days as they dont want to be sued but in reality with regular check ups and awareness, malignant changes are unlikely

      Get a good magnifying mirror and watch for any changes- report them to your doctor

      Good luck and try not to worry and thoroughly enjoy your little people

      Sue

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  • Posted

    Hi Mary, I followed Hanny's advice and haven't had a bad flare up in 5 months. It can be controlled it's just working what's best for you. Stress is the big one for me. I've also started Paleo. There is a lot of discussion around it helping auto immune problems people are experiencing. 

    Initially i was worried about cancer too. It didn't help that a useless Gyno told me it would likely kill me. Needless to say stress levels were off the reichte scale. If you have a good, knowledgeable gyno, supportive husband and friends and diligent in your daily routine you will be okay.  I was using Clobetesal daily for nearly 5 years and now down to once a week. I use Ovestin every second or third day and baking soda and water all the time.

    good luck

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  • Posted

    Mary, you're young and have already had your kids, so you have a good chance, now that you're being treated, to keep LS under control. I had decades of painful sex before my diagnosis. If I'd been able to explain my problem was medical I could have avoided sex until the latest flare-up subsided. And I sure wouldn't have been using the 3 PM chocolate bar and after work drinks as 'stress management'.
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