In high school, my monthly period pain slowly became a daily pain. A constant dull, dragging, aching pain in my pelvic area. Imagine the pelvis is like a bowl. The muscle and bones make the bowl and the pelvic organs are inside the bowl. For me – it was mainly what was in the bowl that hurt, but eventually the whole pelvic area hurt too. In the 1990s when I stated clearly to the doctors that I had this constant pain, I was told that “it was in my head not my pelvis” and “here – have some anti depressants”. My mum tried her best helping me through the pain but because we both listened to the doctors we were both made to feel that I was “going on about nothing”. It is very sad that girls are still being told this rubbish today.
I left high school in 1994. It was 13 years later that I was formally diagnosed with endometriosis after having a laparoscopy with Dr Michael Cooper – despite having endo symptoms that whole time. Had I been taken seriously about my pain at high school – I might have been given a better road map regarding how to navigate this exhausting condition.
It would have been great if the following pain management strategies had been implemented: to learn about which family of pain medications I should and shouldn’t mix, be sent to a pain specialist counsellor, and a pelvic floor physio-therapist who specialises in reducing pelvic pain, and an endometriosis surgeon who does excision surgery. Perhaps I could have been encouraged to pick a career with low stress and flexible working hours for when I was unwell and to start trying for a family earlier rather than later because many women with endo have fertility issues.
Finally, at 38 years old, I have beaten infertility and have twin girls thanks to ivf. Hopefully by the time they get their period there will be a simple saliva, pee or blood test to screen for endo so that they can enter this disease platform prepared.
Now I’m working with a multidisciplinary pain team to keep my pain in check and have learnt that the “healthy person goals” I always strived for have to be tweaked in order to be “endo friendly” and allow me to have a more realistic framework. It is also helpful to have a sensitive partner and friends who understand that you are not faking the pain and who can help support your journey with this disease.
I encourage anyone who thinks or knows they have endo to buy the EndoActive DVD because if I’d had access to this 22 years ago I would have navigated my life in a much more endo-friendly way.
