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Why Endometriosis Is One Big Waiting Game

Endometriosis is one big waiting game.

I wouldn’t say I waited throughout my teenage years because I thought the immense pain I felt every cycle and extremely heavy bleeding was all completely normal. But I did wait for it to come each month.

Sex very suddenly became painful, and I waited for that pain to disappear. It didn’t. I waited for a doctor’s appointment to discuss how I was feeling. I sat through a series of examinations and endless embarrassing questions about my body and my sexual health. When everything came back clear, I waited for a referral to a gynecologist.

I met with my gynecologist and I waited for him to perform a diagnostic laparoscopy on me. I waited while he explained endometriosis to me by handing me a leaflet, which told me nothing other than cold hard facts.

I waited for my next referral to a specialist consultant at another hospital. I spent years visiting him, watching as he would sit back in his chair, scratch his head and ask me, “What do you want me to do?” I tried everything he suggested. I waited for him to fix me, to make me better, to stop the pain. Of course, that never happened. I waited for months and years for treatments to work like he said they would. I waited for this “cure” he always told me about.

I never expected to have any flare-ups with endometriosis. No one had told me that could happen. When it did, I waited for the pain to stop, for someone to help me. I waited to be given something that would stop this happening again. I wasn’t given anything other than an increased amount of painkillers. I had doctors refuse to take out the Mirena coil that I had inside me. I waited until they changed their minds.

Things didn’t get better. I didn’t stop hoping though. I took things in to my own hands, researching everything I could about endometriosis. I met people online who also struggled with the disease. I started speaking up about endometriosis and what it had caused to happen in my life. I helped others where I could. I waited for my specialist to tell me to stop “Googling endometriosis,” which he did a number of times.

I not-so-patiently waited to fall pregnant. My consultant told me to relax and it would just happen. A year down the line and relaxing wasn’t working. I waited for the waves of grief to flow over me month in, month out. I waited for our referral on to the fertility clinic, to find out that I was the problem. Months of counseling, regular blood tests, scans, injection lessons, egg collections, embryo transfers and then the seemingly eternal two week wait.

I waited for two years to fall pregnant. I then waited for our baby to arrive through nine long months of extreme pain, long hospital stays, preterm labour scares and a multitude of scans and check-ups. I waited for this miracle to “cure” me. I didn’t get my cure but we got our beautiful baby.

Post-birth, I knew what would eventually happen. I waited for it. The pain slowly but surely crept back in, gradually getting worse as time went on. I saw my doctors regularly and was eventually referred back to the hospital. I waited to see what my new consultant would suggest. I waited for her suggestions to work.

Now, I wait to see what happens from one day to another, because I have no clue, no indications that something might or might not happen. No big flashing signs to tell me a flare up is on the horizon. The pain comes and goes as it chooses too. And I wait for what it chooses to throw at me next.

Getty Image by Alondra Carrizales

This story originally appeared on Emlwy.

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