The first time they opened me up, they found Stage 3 endometriosis. Although I’d been in pain most of my life, it was only less than a year before the surgery that I curiously Googled endometriosis for the first time and had a hunch that this might be me.
Endometriosis is a progressive, life-long disease when tissue similar to the lining of the uterus grows in unwelcome places. It takes an average of 7-9 years to diagnose and affects about 10% of people assigned female at birth. For a decade, this disease was growing on my ovaries, my bowel and behind my uterus. Every month, these tissues got inflamed, scarring and fusing my pelvic organs together, but menstruating and being in pain come hand in hand, right?
I was raised to believe that pain was normal, that having a week struck off every month was normal, that somehow painful bowel motions were normal. Retrospectively, it’s delusional, but when you live that reality every day you learn to keep going. The cost of this is huge, and finances are only one part of it. When you practise something a lot you become an expert at it, whether it’s a good or bad thing. My body became really good at finding ways to feel pain even when there wasn’t an anatomical reason for it. Over time I developed vaginismus and vulvodynia – conditions that suited my parents’ prescription of chastity. I’ve stopped having my periods and have had the disease excised, but to this day a sharp pang strikes under my belly, and I sit here writing this with the feeling of a hot poker lodged into my hip.
In the year of my diagnosis, endometriosis cost me $21,825.95, spent on surgery, specialist appointments, Chinese and Western medicine, ultrasounds, pelvic physiotherapy, and GP consultations. I’m lucky to have had health insurance at that time, but it may not be the last time endometriosis costs me thousands because there is no cure.
I remember the feeling of waking up from my laparoscopy and feeling the right number of bandages on my belly to indicate that they had found endometriosis. Thank god there was a reason I felt terrible for so long. For a while, I worried that maybe I was making it up. Maybe I was wasting everyone’s time. Ultrasounds can only find an extent of endometriosis, and as far as mine had gone, there weren’t any alarm bells. I didn’t want to share how awful I was feeling in case it wasn’t real. This diagnosis did wonders for my self-confidence.
Being in the pre-diagnosis stage is the hardest. I lurked on Reddit threads to find a sense of solace and understanding, while turning up appointment after appointment with a well-practised script to keep moving forward to a diagnosis. You’re deflecting well-meaning advice and managing your symptoms while they’re at their worst. In this time, community is needed. Someone who will make you feel validated is needed. People who know what they are talking about are needed. And while the wait until a diagnosis is long, these are the people who may help that time feel shorter.
- Eda Tang
