A powerful personal story of living with stage 4 pelvic and thoracic endometriosis, the long journey to diagnosis, and learning to listen to the body while navigating health, fertility and life.
I’m Nadine, 39 from London living with pelvic and thoracic endometriosis.
My periods as a teenager were awful. I was always bloated, bed bound, losing weight, vomiting, constipated and bleeding heavily. This was my normal.
It took five years for me to get a diagnosis. My GP was reluctant to take action until my dad came along with me to an appointment and requested I was referred to a private hospital. By that time I knew I had endometriosis as I had done so much research. The consultant confirmed it was endometriosis stage 4 but I was “too young” to have it removed.
I ended up having multiple surgeries because of my endometriosis. At age 25, I had a stoma and then a reversal a year later. During my thirties I spent several years doing IVF as I had been told that was my best chance to conceive. Sadly, I had my fallopian tube removed due to an ectopic pregnancy caused by adhesions from the endometriosis. The hormones from fertility treatment were making my body weaker and I had two surgeries for thoracic endometriosis in 2019 and 2022 (both over the festive period).
After almost twenty years since my diagnosis, I still haven’t had my endometriosis removed. Over the years, I’ve realised that endometriosis is a whole body disease. People with endometriosis shouldn’t have to wait so long to be taken seriously and receive a diagnosis. I am one of three daughters and all of us have this debilitating disease. My dad was my biggest supporter and I’ll always be grateful for him pushing to get me that initial diagnosis.
It can be tough balancing a number of priorities in life… health, family, work, grief. But I try my best to listen to my body, slowing down when I need to and reaching out to my amazing endometriosis specialist nurses.
If you have been diagnosed or think you might have endometriosis, there’s an incredible community which you can join including charities.
Connect with Nadine here