ehlers-danlos and endometreosis?

hi everyone, i am 22 and have been diagnosed with EDS type 2 since i was 6 months old (my mum and older brother have it too) had strong abdominal pain for 2 years and last month was diagnosed with endometreosis..I am struggling to just get out of bed lately because of the pain and fatigue. I was wondering if anyone else has been disgnosed with both and what you do to cope? 

thanks

8 Replies

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  • Hello Jess.  Yes, I have endo & EDH.  Also I have infant onset lupus & primary immunodeficiency, as well as the typical collection of secondaries (sjogrens, raynauds etc etc)

    The HealthUnlocked Endometriosis UK forum helps me a lot to cope with my endo...have you visited this forum?  I recommend it.

    Are you being monitored & treated for endo?

    All my life the powerful prescription NSAID Mefenamic acid 500mg has been key to managing my endo.  Otherwise I've done my best to lifestylemanage chronic symptoms via antiinflammation diet, hydration, exercise, paving myself etc etc

    Take care 🍀🍀🍀🍀 coco

  • thanks for the reply, yes i have looked at the endometreosis forum but not seen anyone with ehlers-danlos too so tried here. I have had a lap but as tissue is alot softer due to EDS they couldnt remove much. unfortunately when i was perscribed mefanamic acid it made my symptoms especially cramping alot worse. I will look into antiinflammatory diet though, thanks. 

  • Good thinking.

    Following on from your response, I wonder: are you monitored by a rheumatologist experienced in connective tissue/immune dysfunction patients?  I ask because your reactivity + the chronic fatigue may be partly due to an autoimmune prob.  Yes, endo is considered autoimmune, but these conditions do often overlap...perhaps another connective tissue disorder is at play.  Perhaps you'd benefit from a trial of, say, hydroxychloroquine?

  • i am currently under the care of a rheumatologist but an autoimmune issue has never been discussed. Its definetely something i will discuss with her for my next appointment. 

  • hope you'll let us know how this goes

  • Hi Jess,

    I'm sorry to hear you suffer so much, & so young.

    Some auto-immune disease is helped by functional medicine, ie, diet. Mine's not perfect, but I keep away from processed food, inflammatory oils such as sunflower, & eat occasional sourdough rather than ordinary bread. I also eat kefir every day, so my gut flora should be happy, which improves nutrient absorption.

    I find this guy's diet suggestions make a difference to how I feel, though paleo is difficult when vegetarian.

    my.chriskresser.com/wp-cont...

    There are several free downloads, aside from this one. I also follow a guy called Mark Hyman, who has a similar approach to health & diet.

    M*

  • Hello there, I have just been diagnosed this week with EDS after having nearly 25 years of severe stage 4 endometriosis. I didn't realise they were connected. To help with mine (over and above the major surgeries, hormone treatments and hysterectomy) I swear by the no gluten or lactose diet.. It's made a huge difference to me. Might work for u too and certainly worth a try x

  • yes they can be connected, i've been reading research on the connection apparently it is very common for women with eds to suffer with endometreosis too 

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