My name is Alex and I am on a journey to learn more about Endometriosis.

I was forced to leave my career due to acquired disability from three surgeries, medical treatments and the progression of several chronic illnesses. After two surgeries in Australia, I had to fly to Switzerland to meet with and be assessed by the pioneer of the discipline of neuropelveology. He believed I have an atypical case of sciatic endometriosis and other extrapelvic disease. I sought another opinion in Romania with an expert who also thought I had sciatic endo, however, at that stage I was the 3rd case he had seen and he had not trained in neuropelveology or operated on the sciatic nerve previously. I had my third surgery in Australia and was told they had been waiting for a case like mine. I was the second person in the country to have robotic dissection of my pelvic sidewall and sciatic nerve. Five hours later my sacrospinous ligament had 15 stitches in it, I was told I had sciatic entrapment syndrome and it had been released during surgery. No biopsy was taken of any of the black disease that looked like ‘black spiderwebs’ covering my obturator and my sciatic nerve. Without a biopsy, the disease couldn’t be sent to pathology and identified. I spent a long time in a wheelchair and a mobility scooter attending numerous medical appointments, they had never seen a case like mine. Two months later I found out via a deep infiltrating endometriosis MRI in Romania that I still have sciatic endometriosis, adhesions, adenomyosis and other disease left behind. Of course, back in Australia the MRI was ignored and four years later I am saving money to see the only other neuropelveologist in the Southern Hemisphere. 

I am not what happened to me. I have found my voice as the creator and host of the Invisible Iconic Podcast, where I explore lived experiences and global standards of care relating to Endo. Most recently I founded the Endo Circle and the Invisible Iconic Endo Webinar Series. I am the owner and founder of Invisible Iconic - an endo and chronic illness education small business.