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Undiagnosed Endo Gave Me 5 Years of 'Functional Strokes'

Sounds crazy, but if the last 4 months are anything to go by then it would appear that this headline is true...

I am just over 4 months after stage 4 endo surgery which had gone undiagnosed for over 30 years. It had been misdiagnosed as IBS / CFS (Chronic Fatigue Syndrome) / Depression / Hemiplegic Migrane / Unexplained infertility / Menopause and then FND (Function Neurological Disorder) - mine was the rarest kind. It gave me 'functional strokes.' I have had so many in the past five years I stopped counting after I'd had 1000 of them - groundhog day does not describe the non-stop rollercoaster of stroking out, having to learn how to walk, talk, remember, and function, only for it to all be wiped out and have to start all over again.

Looking for help and answers

Last year I ballooned so much I took matters into my own hands and found a non-invasive gynae expert (with a specialism in endo). He knew something wasn't right, so he agreed to exploratory surgery (despite being told by 4 other doctors, both NHS and private there was nothing wrong, just take some more HRT). 4 hours later, a radical hysterectomy, ovaries, parts of my liver, bowel, appendix, and bladder all painstakingly removed and guess what, my 'strokes' have stopped ! It would appear there is a link between extreme and prolonged inflammation and the brain and it was literally 'shutting me down' as it couldn't cope with the levels of stress my body was having to deal with on an ongoing and extreme basis.

A piece of the jigsaw

Looking back on 30 years of ill health I realise that every 'disorder' or diagnosis was a piece of the jigsaw which my body was creating to message me that something wasn't right, my doctors never tried to find the root cause of my various diagnosis' just treat the symptoms, which they did to the best of their knowledge at the time. I am no longer angry but I am fired up with a passion to make sure people know about how important it is to never stop trying to get to the root cause of the problem, never giving up and never letting endo control or ruin your life, no matter how hard it gets.

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