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 the extremely heavy bleeding were all completely normal. But I did wait for it to come each month.

Sex very suddenly became painful, and I waited for the 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 waited for him to perform a diagnostic laparoscopy on me. I waited while he explained endometriosis to me by handing me a leaflet that 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 from 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 into my own hands, researching everything I could about endometriosis. I met people online who also suffered from the disease. I started speaking up about endometriosis and what it had caused in my life. I helped others when 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, relaxing wasn’t working. I waited for the waves of grief to flow over me month in, month out. I waited for our referral 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 labor 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 are telling me a flare-up is on the horizon. The pain comes and goes as it chooses. And I wait for what it chooses to throw at me next.

You can follow more of my journey over at www.emlwy.com.

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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.