Written By KENNEDY JOPSON

Endometriosis is a global epidemic affecting 1 in every 10 people with a uterus across the world, with more people being diagnosed every year thanks to the rising awareness about this disabling condition.

How long and how far is the journey to receive a diagnosis and proper care? Here’s my story:

From Epic to Epidemic

Studying abroad in London UK I hoped would be an epic experience. I didn’t expect it would become an epidemic. I think of my journey towards achieving a diagnosis of endometriosis as an “epic journey”

-- think of The Divine Comedy where Dante embarks on a journey through the levels of hell and back. Or Diana Ross skipping her way down a yellow brick road. Searching for the safety of home in ruby shoes amidst tribulations in The Wiz -- having entailed turbulent travels, trials, and triumphs to reach a point of enlightenment.

From Ordinary Life to An Extraordinary Amount of Blood

In summer 2017 as I prepared to move overseas and brave my first coming of age adventure, my periods gradually extended to two weeks-- then to three. Like any 22-year-old woman who planned to go exploring would do-- I had a precautionary Well-Woman's exam and my final Gardasil HPV vaccination shot just before my departure.

The test results detected a few ovarian cysts ranging in size and traces of cancer cells. According to my doctor, this was for the most part “normal” and my irregular period was said to be due to stress. I tried not to worry too much or consider this to be a bad omen.

There’s No Place Like London

I came to London to study art, history, and to grow into a new version of myself. The city provided new spaces for me to learn more about cultures and customs outside of my own, thrive in my independence, and expand my community by cultivating friendships with people from all over the world. I was embracing new spaces and extending my experience.

By mid-term, I was bleeding vaginally nearly every day, never knowing when the bleeding would end. With only a 6-month visitor visa, I didn’t have access to the NHS (National Healthcare Service) , the UK’s FREE healthcare system. Like many Americans who cannot afford or access healthcare, I had to grit my teeth and bare it. However, I didn't know this continuous bleeding would carry on for a year and a half. “Bloody Hell,” as the English say, is right.

Trials and Tribulations

At the close of 2017, I completed my study abroad course and decided to prolong my studies in London to complete my degree there. I took on more private student loans, ironically hoping to redeem some of the joy I felt my bodily circumstance had robbed me of. I experienced the loss of my virginity from being spiked by someone I thought I could trust and was sexually assaulted.

I internalized those pains as a failure to liberate myself through joy and pleasure. I was desperate to escape pain. The pain of returning from where I’d come with nothing to show for it. The pain of being stuck in this body. The pain of moving forward. Through it all, I was alone.

Isolation

I was alone for several costly and inconclusive follow-up appointments with my gynecologist in Texas between the spring term and the summer of 2018. Cleared for cancer cells but left with no explanation for the new pain, bloating and fatigue I was experiencing.

I was alone for transvaginal ultrasounds detecting tennis ball-sized cysts and the debilitating pain that shot down to my knees after. I felt alone when my hormonal IUD was inserted, with five unexpected nurses in training present. Crowded closely at my sides looking down at me and up at the screen displaying a live visual of my innards for all to observe.

I felt alone knowing no POC medical practitioners were working in that office. And frustrated by their dismissive attitudes toward my symptoms. Why was my pain not being taken seriously? Why was this suffering considered a common aspect of being a woman?

Finally Finding Help

At the end of summer 2018, I returned to London for my final year of university. Now with an international student visa, I had access to the NHS and sought a woman identifying as a POC gynecologist. When I met Dr. Akubame, a Nigerian gynecologist based in London, I was initially very upset. He was not a woman as I’d requested, but he was the first gynecologist to listen to my concerns.

“Alright. Are you comfortable with me performing a pelvic exam on you today? It would require me to feel around your vaginal canal to check for any pain and abnormalities”

I decided to trust him.

From the pelvic exam, Dr. Akubame detected lumps (endometrial polyps) lining my uterus. Instead of writing them off as noncancerous and not of concern like my gynecologist in Texas had, he sent me to have an ultrasound for further investigation. From there, Dr. Akubame offered to schedule an ablation surgery to remove endometrial lesions within three weeks. I’d waited so long for someone to believe me. I was in disbelief and terrified.

What if all the things I’d read about endometriosis online were true?

What if an ablation surgery made me infertile?

What if I never woke from the anesthesia?

Could I bear to be unconscious again while a man toyed with my body?

What if they found endometriosis?

What if they didn't find anything?

I had to try anyway.

Achieving Diagnosis - A Supreme Ordeal

On January 24th, 2019, I arrived at Blackheath Hospital in London for an all-expenses-covered surgery, with an overnight bag. Ushered to the room where I would wait, anticipating the surgery for hours, I was supported by kind nurses who checked in on me and complimented my hair. I called my mother to show her my hospital gown and silly paper underwear. I wore a bit of gold eyeshadow and mascara, just in case.

A team of medical professionals carted me on a surgical bed to the “theater room” to begin the anesthesia. Laid flat at center stage, I smiled at onlookers. My eyes began to feel heavy, and a single tear streamed from the corners of each. My gilded flesh curtains closed, and the lights went out. I awoke, relieved to be conscious, with a diagnosis of stage 3 wide-spread endometriosis. Grateful. After spending the night alone at the hospital, I took a train home the next morning. High on affirmations and morphine from the surgery.

I powered through my final semester and graduated from UAL Central Saint Martin’s School of Art with a BA(Hons) in Culture, Criticism, and Curation in July 2019. My mother came across the pond from Texas to be present for the celebration.

Chronic Illness and Seeking Resolve

In hindsight, the signs of endometriosis were present from pubescent age. Having the awareness of my condition was the key to advocating for my health and accessing the knowledge to care for myself.

Today, I continue to struggle with symptoms and finding/accessing adequate care. Still, I refuse to believe advancements in safely treating endometriosis cannot be made.

Diagnosis is the bare minimum of what you deserve and only a step in the journey to make changes in society to improve the quality of life of Black women, people with a uterus, and the disabled community. I am proud of EndoBlack and endo community everywhere for working hard to amplify our voices and build a new future for ourselves.

The world wouldn’t be the same without you. It’s going to change because of you. Keep striving through the journey. You’re never truly alone.

An Epidemic Journey