An Endometriosis Diagnosis Causes a Complex Emotional Response

An Endometriosis Diagnosis Causes a Complex Emotional Response
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In the U.K., it takes an average of 7.5 years to receive an endometriosis diagnosis.

In a way, it is somewhat akin to landing the job of your dreams. It takes determination, multiple tests, studying up on all available information, speaking to the right people, and convincing others you are worthy of it. It requires a great deal of energy, tears, and quite often, money.

As one approaches a diagnosis, a bundle of complex, loaded emotions emerges. Like a shiny, promising new career, a diagnosis can change everything.

In my case, receiving an actual diagnosis took decades. I was hospitalized after my first period and experienced excruciating symptoms throughout my teens. The single factor that accelerated my diagnosis journey came at age 36. A close friend, who also is an endometriosis patient, recognized my symptoms and encouraged me to pursue a laparoscopy, the current gold standard in diagnosing the disease.

Holding a piece of paper with the word that explained years of suffering not only proved I wasn’t imagining my pain, it also confirmed I wasn’t going crazy. Still, nothing had prepared me for the roller coaster of emotions that came right before being told I had endometriosis, or the moment I was told I had it.

Firstly, I feared not getting the expected diagnosis.

Many patients dread being told it is not endometriosis. If not, then what? After years of invasive tests and countless hormonal treatments, it is a conflicted feeling to wish for a disease with no known cure. Yet those were my thoughts on the operating table, as I fell under the spell of the anesthetics, telling all those mask-wearing strangers how I loved them and to please not ruin my perfect bellybutton. 

I wholeheartedly hoped it was endometriosis. It just had to be.

Next comes the realization that endometriosis is a mystery to those who treat it.

On the day of my surgery, the doctor due to perform it was unavailable. The on-duty surgeon took over my laparoscopy and gave me a diagnosis, yet admitted she couldn’t explain much about my particular case. 

In fact, it was the junior doctor assisting the main surgeon who offered me a more in-depth diagnosis. She told me the kind of endometriosis I had was not the worst, yet not the easiest either. Her bright blue eyes reassured me as I nodded, trying not to fall back asleep.

As I lay in the recovery room, another revelation happened. My surgeon had mentioned that in order to start relieving some of my symptoms, they would remove any adhesions they found. Yet, the inexperienced on-duty surgeon who carried out the procedure chose to leave my adhesions untouched.

That was a blow that hurt even more than my stitches. It meant more surgery on the horizon. At that point, drugged up and sore, it was something I wanted as much as repeatedly being punched in the face.

No clear, bright horizon after an endometriosis diagnosis. Instead, a complicated future. (Photo by Jessie Madrigal)

Sometimes knowledge is power. 

Discovering, quite literally, that endometriosis was pulling the strings in my body held the key to a different life. It was a new reality in which I had recovered some control. Although my illness would continue to trip me up, I finally knew the monster I was facing. 

The endometriosis beast is relentless, but so are its patients. We stand against it daily, fists clenched. Sometimes we buckle, sometimes the chronic fatigue kicks in. Once we know what we are up against, we are not the same person we were before. Our life has one less question mark. Where we once had doubts, now we have written proof that we are stronger than the average person. That’s what I remember with every painful flare-up. As bad as this disease can be, I was made to live through it.

While getting a diagnosis still takes too long, everything that comes with it, the emotions and heaps of information, all land at once. It is no wonder it changes us forever. 

How did you experience being diagnosed? Please share in the comments below. 

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Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.

My name is Jessie. I am a writer and part-time Yoga instructor living in the south of England. Since being diagnosed with endometriosis, I’m determined to be the boss of my chronic illness. You’ll find me with two sausage dogs curled up on my belly and my duvet nearby, writing about life and whatever my mind thinks up. This is my journey.
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My name is Jessie. I am a writer and part-time Yoga instructor living in the south of England. Since being diagnosed with endometriosis, I’m determined to be the boss of my chronic illness. You’ll find me with two sausage dogs curled up on my belly and my duvet nearby, writing about life and whatever my mind thinks up. This is my journey.

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5 comments

  1. Debra Seagreen says:

    I am unable to have children due to Endo and PCOS, experience excruciating pain each month. It is a relief to read the experiences of a person and not a case study. Thank you Jessie. Stay strong. And when you cant I’m sure your Dachshunds are great listeners. My Boerbul and Husky have heard all about it .

  2. Thank you for sharing what it was like for you to reach a diagnosis. I know that sharing your story is helping so many others out there. For me there is my life before diagnosis, and the one after diagnosis. I wasn’t diagnosed with endo but Huntingtons and infertility. It completely changed my life.

    • Emotionally, it can be really complicated to receive a diagnosis that is so life-altering. It is weird mixture of relief, but also deep worry and upset. Thank you Erin, for reading, and sharing your own experience.

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