The Doctors Who Got My Diagnosis Wrong
This won’t be huge news to anyone familiar with the disease, but it still takes an average of 7.5 years to receive an endometriosis diagnosis.1 I began experiencing symptoms since my first period, yet was only diagnosed at age 36. My journey was an incredibly fraught one, involving numerous medical appointments and several hospitalizations.
Since my teens, I have been dismissed more times than I can remember. Some doctors told me to relax, others to eat better. A few suggested I took antidepressants. For almost two decades, I was prodded, injected, and made radioactive - hello MRI, you old friend!
As a souvenir of the many doctors that got it wrong, I own countless medications that never quite worked, and have now expired. And in my mind, the unforgettable ones: those who really missed the mark.
The one who told me to eat more bacon
In my late twenties, I developed a limp. Years later, I would find out this was caused by adhesions around my sacrum, limiting the movements and flexibility of my pelvis. Yet, at the time, my GP told me that my issues were due to an unhealthy diet. He strongly believed that my face reflected a lack of minerals and iron, and suggested I eat more bacon.
I wish I could tell that doctor how I am now a vegetarian who runs marathons.
The one who wanted to do surgery on my spine
Around that same time, I was sent to have all of the imaging tests under the sun. A back specialist told me that my issues were deep within my spine, and he wanted to schedule me for surgery. I remember sitting at his cold office not quite believing it all. When we left, my partner at the time was adamant: “There is no way we are letting anyone touch your spine. That cannot be the answer.”
To this day, I am grateful for the determination in my ex’s mind. At the time I was so depressed and low, I would have probably have agreed to a major procedure that was completely unnecessary.
The one who told me it was probably stress
Two years later, I was living in Barcelona, and lucky to afford private health. I felt somewhat confident that paying more money, meant a better quality of care when listening to my complaints. So I scheduled a general check-up. On the day, I explained how it hurt during ovulation and, upsettingly, sex. The female gynecologist who saw me said I had nothing to worry about that: "It is probably just stress. Have you tried meditating?"
The one who told me I had polycystic ovaries
This gynecologist diagnosed me just by looking at my face: “Do you see all that acne around your chin? That means you have PCOS”. It took two different specialists to definitely determine I had no PCOS.
Not included in this post are the two doctors that made me cry. They caused me to file complaints while I was still shaking, wiping my tears away. I have also left out those doctors who didn’t even bother to look up from whatever they were scribbling, to talk to me.
Life with endometriosis symptoms is no joyride
And it is made worse when health professionals prefer to be dismissive and refuse to look past their egos. Does anyone ever tell them what a letdown they are? The saddest side to stories like mine is that it is not them who suffer from their lack of decent care. The patient needing help and support is the one who is let down.
Here’s to a better journey for anyone seeking a diagnosis. And while I'm in a wishing mood, I will dream of a world in which endometriosis patients get the support we truly deserve.
What % of endo warriors from our In America survey have both migraines and endo?