Endometriosis UK
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Testing for lupus. Now !!!!

Hi everyone had an awful day 3.30am woke up wiv huge desire to thro up so dizzy was all over the place , spent hour in loo an realized wasn't gonna make it in for work again , had odd symptoms lately swelling of legs like water retention an my hands rings don't fit constant burning pee an have to keep going thro the night, plus my breathing is painfull after 150 yd walk an cough up mouthfulls of fluid wiv chest pain till my lungs calm down. Doc sent me for blood tests 10 tubes of blood !!! Nearly fainted an I'm so used to blood tests now ,he reckons I may have lupus seems its common to have this with endo has anyone else got both ???? Xx

3 Replies

hello and yes: looks as if it's very likely i've been managing endo for years but because i am being treated for systemic lupus (diagnosed in the uk a few years ago, but prevously diagnosed in the states when i was an infant and a teen - i am now 59) and i seem to be coping with the endo reasonably well (haha) so my gyn & gp & rheumy aren;t putting me through the mill re definitive endo diagnosis. am also a DES daughter, who was exposed full term in utero. endo is in my immediate family. my mother is hypothryroid, since menopause, and we both have lichen sclerosus

there is a grrrrreat healthunlocked lupus uk forum here amongst the communities: check it out if you haven't already

take care & good luck


Hi. Glad u wrote was feeling lonely here 4 a bit ! Doc is doing tests 4 rheumatisum as well as I'm so stiff neck back hips kness ... I will look up the lupus community asap thanks xxx


Hi. I am currently awaiting a diagnosis of lupus. They think I have it because I was diagnosed with APS syndrome after a stillbirth. I had those awful bloods taken, like you say, about ten tubes, and a few came back positive with antibodies that are seen in lupus. But because I wasn't getting any symptoms of the disease I was diagnosed with inactive lupus, which basically means that it's there but it's lying dormant. But now I've been refereed to back to the rheumatologist because of rashes I've been getting and also crippling joint pain :(

Good luck, let us know how you get on. And It's good to know I'm not the only one suffering with so many illnesses at one time! Keep strong!

Stacey x


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