The Pain of Endometriosis

At the ripe age of eleven, I got my first period. I remember being deeply uncomfortable and generally feeling awkward when discussing the changes happening to me as a young teenager. I faced this a little earlier than most of my peers and felt isolated. There was minimal dialogue in school then, and that which did exist only further embarrassed myself and others. So, most of my initial education was passed down from older girls. They graciously shared their fragmented, albeit insightful, nuggets of wisdom and their tampons and pads.

Because of this gap in education, when I experienced long durations of heavy bleeding, cramping, pain radiating through my legs and back, tenderness and fatigue, I wrongfully assumed that this was the experience women must bear for the better part of their lives. I silently accepted the burden of womanhood. Pain.

I vividly remember my first episode of intense pain. It began with a two-hour drive home. What started as mild menstrual discomfort quickly grew into a sensation like having my stomach being ripped open from the outside in. I squirmed in the back seat of the car. I first adopted a foetal position, and when this did nothing to alleviate the pain, I laid flat with my legs splayed across the back row. I felt violently ill and began sweating and shaking. Nothing was providing me relief, and it was getting worse. Tears streamed down my face as my parents tried their best to soothe and reassure me that we would be home soon and that I would be alright. This was the first of many times my mother would mumble concerns from the front seat about her experience with some strange thing called ‘Endometriosis’.

When you are in a degree of pain like that, the minutes move more slowly. I would repeatedly be at the cruel mercy of this time warp in the coming years. Wishing I could kill time whilst time was killing me.

By 2020, the pain could no longer be masked. At its worst, the distention in my stomach made lifting my legs into pants difficult when getting dressed for the day. I started skipping meals entirely to avoid excessive pain and bloating. I weighed 47 kilos. I was hurting more often than not. One day at work, I called my mother to ask if my pain justified a visit to the Emergency Ward, to which she replied, "If you’re calling to ask, yes.”

That was just one of many visits to the hospital and countless trips to general practitioners and specialists. Each appointment more traumatising than the last. For over two years, I cycled in and out of the healthcare system with different doctors, waiting weeks and months for short consultations only to leave feeling less clued-in than I had prior. At worst, I was exposed, poked, and prodded to have doctors deny my symptoms or downplay the torment I was in. At best, I was given painkillers, laxatives, and told to improve my diet by “incorporating mint and ginger more regularly for their anti-inflammatory properties.”

Later that year, I finally met with a specialist who, within the first 3 minutes of the appointment, had ticked off enough “yes” boxes on her questionnaire that she felt confident in giving what I had a name.

I didn’t need more mint in my diet; I needed to be listened to.

I needed resources, support, and care. She said that I couldn't be certain without a diagnostic surgery (a laparoscopy), but that my symptoms and story were typical of someone with endometriosis. A chronic inflammatory condition where endometrial tissue (the stuff that lines the uterus) instead grows outside where it shouldn’t be. I wept like a child in front of her. Mum was right all along.

I’ve undergone two laparoscopies since. In both operations, along with endometriosis speckled across my uterus and bowel, my left ovary was found stuck against my stomach lining. This is due to adhesions that grow, which essentially web your internal organs to one another. If it sounds intense, that’s because it is. But such an outcome is barely the worst of it. I’d consider myself lucky.

If you search “endometriosis” on Google, the third suggestive question that people ask is “Is endometriosis a serious thing?”

If there’s anything I hope readers take away, is a profound, echoing “YES” to that question.

For the 190 million people around the globe recorded as grappling with the illness, it couldn’t be more serious. In many countries, endometriosis is not yet recognised as a real condition. Even in a country as developed as Australia, receiving a diagnosis takes an average of 7 years. I believe this primarily comes down to a formed societal idea about women’s pain, which shapes how we approach it medically.

The word ‘hysteria’ is a Greek derivative, meaning ‘womb’.

The “best practice guidelines” available to health practitioners for ailments like endometriosis are narrow and cursory, to say the least. There are nearly no financial-aid schemes or rebates for the treatment and management of endometriosis. It is a compounding problem.

The condition has imposed greatly on my personal, romantic, and professional lives. My mental health has suffered immensely. I feel the experiences I’ve had with medical professionals have jaded me to my core. The relationship I have with myself has been seriously tested. I have hated my body for the pain it has inflicted upon me. Add this to the general pressure most young women face regarding their physical appearance, and you have a recipe for extreme self-loathing.

Dr. Sabine Kane of the Australian National University says, “Endometriosis in itself does not have a clear medical definition nor a set way of identifying with the condition, whether relating to the social or personal view of the illness. It is then up to each individual with endometriosis to decide what the condition means to them.”

This self-governance can feel like an extra responsibility that many of us do not have the energy for. It only affirms a perception of isolation and hopelessness. But if it is up to us to define what the condition truly means for us right now, I choose to decide that it means I am strong.

To anyone reading this who recognises themselves in these words, I want to say you’re not alone. I want to say I’m sorry for what you are enduring and for what you will continue to endure. I know you are tired in ways some will not understand. I have cried and pleaded and begged a God I don’t believe in to let me die at times when I couldn’t find relief; in those excruciating time-warped minutes. This illness has burdened me in ways I could never have anticipated. But it has also equipped me with a sense of self that I otherwise would not have. I have found a community of people who feel more like family because of the condition. Even in pain, there is comfort. So do your research, and empower yourselves. Trust that there will be a better one for every negative experience in a doctor’s office. For every misstep, there will be an improvement. For every sunny day spent in bed with the blinds closed, there will be one with a light on your face, and it will be sweeter for you than most because it just means more.

It’s as if the heat pack that’s barely left my stomach in the last few years has lit a fire in me. By giving you these words, I breathe oxygen into it and ignite a flame that can only continue to grow. I choose not to see in red anymore. I choose joy, gratitude, and a quality of life far greater than what I’ve been sold. I choose community, and I choose to continue talking about it. I hope you do, too.

You can follow Tayla’s journey here