a woman holding a puzzle piece over her abdomen with a uterus on it

Getting Diagnosed With Endometriosis Is Emotionally Complicated

In the UK, my home country, it still takes a whopping 7.5 years to get diagnosed with endometriosis. It is a lengthy process that demands a lot of resilience from patients. One has to be OK with arguing with doctors, asking for second and third opinions. As patients on the road to a diagnosis, we become the receivers of dismissive comments and lazy attempts at a diagnosis.

It’s no wonder how it all can take a toll on our mental health. Yet that key diagnosis, that one piece of information, can change our lives for the better. At the same time, it may also mean the start of surgical procedures and plenty of hit-and-miss treatments.

For me, getting diagnosed came with conflictive feelings

From an early age, I knew there was something wrong with me. I was twelve when I got my first period. I lost so much blood,  I ended up hospitalized. Throughout my teens and twenties, I saw a myriad of doctors. Many blamed my symptoms on stress, while others told me that bad periods were a thing I had to live with. It was only in my mid-thirties when a friend of mine with endometriosis alerted me to the disease. After a lot of research, I begged doctors for a laparoscopy.

I feared not being diagnosed with the disease

As I laid on the hospital bed waiting for my procedure, I worried it may not be endometriosis. Yet, what else could it be? After years of invasive exams and being prescribed hormonal treatments that wreaked havoc with my mental health, I desperately wanted to be told I had a disease with no known cure. It was a weird place to be.

Post-surgery, I stared at the piece of paper that stated I had endometriosis. This single document proved that for years, I hadn't imagined my pain. My pain was real, and I was definitively not crazy.

This disease is no straight-forward journey

Even on the day of my diagnosis, I became aware of the complicated journey that laid ahead of me. The surgeon who performed the laparoscopy confirming my diagnosis, admitted to not knowing much about the disease. Hence, they left all of my adhesions untouched. They were also unable to tell me anything about the degree of my disease. Only the junior doctor assisting the surgery was able to tell me that the type I had was not the worst kind, but definitively not an easy case.

A few weeks later, during my first support group meeting, I was exposed to the countless stories of repeated surgeries, failed treatment, and worlds of pain many patients encounter.

No matter the emotions, a diagnosis is a wonderful thing

Although endometriosis is an illness that trips me up daily, knowing it was the answer to years of pain and worry, felt powerful. It gave me a sense of control, even if a limited one.

Getting a diagnosis still takes too long. The bundle of emotions that come to join the party do so all at once. It is an experience that changes us in more ways than one. Gone are the doubts, the questions, and ahead is a future that is still uncertain. Yet it is one that we can at least attempt to tackle.

How did you feel getting diagnosed? Please share in the comments below.

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