The Things I've Learned Since My Diagnosis
Last updated: November 2022
Learning I had endometriosis was no surprise to me. It was a diagnosis I had suspected for a while.
What was shocking was being sent home post-surgery without information on managing the disease. In 2016, the doctor who diagnosed me shrugged their shoulders and prescribed me some strong painkillers.
Here we are six years later, and while awareness has grown, not much else has changed.
On average, it takes almost eight years to get a diagnosis from the onset of symptoms. Endometriosis is a disease that is still massively under-researched.1
Earlier this week, I walked into a pharmacy to get the medication that halts my periods, only to be told it was out of stock. The pharmacist then suggested I ask a GP for an alternative.
I told them that I had endometriosis and that I couldn't take just any alternative. They stared at me blankly.
What I've realized after being diagnosed
Finding the correct help for this disease is tricky in a plentiful yet often contradictory world.
This community has given me a lot of valuable tips and solace. Life with endometriosis has provided the rest.
Doctors are not experts in everything
Not every doctor will know about endometriosis, and sometimes that’s OK.
I generally raise one of my bushy eyebrows whenever a physician informs me they know this disease. Some doctors who admitted they didn't know much were the ones to listen to what I had to say. They also tried their best to help me.
Some doctors who have claimed to know everything also told me that having a baby would “cure” me. The doctor who got me an appointment with the number one endometriosis specialist in my country was a woman who apologized for not knowing more about this disease.
Eating differently can help
It just won't happen immediately.
It took a lot of trial and error, and I didn’t get any clear answers straight away. For example, I still don’t know if oat milk is good for me.
But eating differently, tracking what I eat, and reading about anti-inflammatory foods have been life-changing. Avoiding meat, gluten, and dairy and keeping an eye on sugar levels have reduced my discomfort and helped with my chronic fatigue.
Find a community
Reaching out to fellow endometriosis patients can be a mood booster.
This can be done via a local support group, an online forum, or our community. Speaking about this disease with those who get it has been great for my mental health.
Feelings of loneliness and isolation were alleviated with inside jokes and shared embarrassing stories I could finally laugh about.
There is an increase in endometriosis awareness
Since my diagnosis, endometriosis awareness has been on the rise. There are articles on the disease in almost every media outlet.
Social media is full of people who live with the disease and now have podcasts, recipe books, and other helpful tools. There has never been this amount of information and support.
I am confident that the future of this disease is looking a bit brighter. That’s thanks to the countless advocates speaking up to ensure better research, care, and life options for the rest of us.
Which symptoms are you experiencing the most this week? (Check all that apply):