living with endometriosis
By Lizzie Butterworth
"I thought that making a fuss about it was me being a bit of a sook... I never thought that it could actually be a medical problem that I should speak to a doctor about."
I was diagnosed with endometriosis May 24th 2018.
I can remember having had “really bad periods” for a long time. Leading up to my period I have always had stabbing cramps, terrible mood swings and a constant lower back pain that refuses to budge no matter how many pain killers I take. The fact that my periods were always irregular before I started hormonal birth control meant that this pain could last for weeks on end. During the lead up and during my period my stomach is a kept a constant shade of blistering red from the hot water bottles and heat packs I keep permanently clutched to my pelvis or strapped into my pants.
I have a vivid memory of sitting in my year ten science classroom, hunched forward with my head on the desk unable to sit up from the pain. I’d taken the maximum dosage of Panadol and unable to do anything else I rested there quietly just trying to focus on listening to the lesson through the pain. My male teacher told me I had to sit up and when I explained I couldn’t because it hurt too much but that I was still paying attention to the lesson, he told me I had to leave his class. I kicked up a fuss and explained that the only difference leaving would make is that I would be sitting in pain in a different part of the school and would miss out on the content for my exam, and eventually I was allowed to stay. I’m thankful that as a fifteen-year-old I felt empowered enough to have that argument in front of my classmates, it’s a lot to put anyone through especially when they’re bleeding internally.
There have been a few occasions when the cramping has been so bad that I have doubled over in tears; unable to move or speak I have just cried curled up in the foetal position. The first time this happened I was almost taken to hospital. The various explanations that my family and boyfriend at the time came up with included a burst appendix or that I was having a surprise baby (my ex-boyfriend read too many clickbait articles…).
I have always been a feminist and have been involved in women’s groups and activism for a few years now. We talk a lot about how women’s pain isn’t taken seriously enough by GPs or the wider public and the need for women’s own understandings of their bodies and health needs to be legitimised. What I hadn’t expected was that I wouldn’t take my own pain seriously. In fact my ex-partner had suggested that I could have endometriosis before I had ever even considered it as a possibility. He was often a hypochondriac on my behalf and I tended to take his diagnoses of me with a grain of salt but maybe I should have listened to him when he suggested I had endometriosis as I lay in Camperdown Park with my head in his lap not wanting to get up and walk the short distance to his house because I just hurt too much.
When we’re little and going through primary school sex-ed we’re taught that periods hurt. They’re going to be painful and that’s part of the womanly experience. I have been having regular periods since the end of year seven and it took until my third year of university to realise that my pain was not “normal”. I thought that making a fuss about it was me being a bit of a sook and whilst I did indulge in this sook-ery to varying degrees I never thought that it could actually be a medical problem that I should speak to a doctor about.
The turning point was earlier this year when I became sick with a kidney infection. I was very ill and started seeing doctors regularly. I go to a medical centre rather than a regular GP and this meant that I never saw the same doctor about it twice. After treating the kidney infection I was still unwell and experiencing significant pelvic pain, something that each doctor had different explanations for. Over the course of about a month the doctors did at least six urine and blood tests, four pregnancy tests, and sent me for pelvic and trans-vaginal ultrasounds. Possible explanations for what was going on included a ruptured ovarian cyst, an ectopic pregnancy, or pelvic inflammatory disease. This last one was the nail in the coffin when I made the mistake of googling it after an appointment and cried the whole bus ride to uni certain that I was infertile. I was nineteen going on twenty and having kids had always been a very certain part of my plan for the future. The fact that I potentially wouldn’t be able to do this biologically was devastating.
All of this was occurring in the middle of me running a student union election campaign, trying to stay on top of full time university study, holding down my job, and just starting out a new relationship. A lot of these things started to suffer and I found myself spending a lot of time crying.
At this point I want to mention one terrible appointment I had which has put me off seeing a male doctor ever again. Just after receiving the results from my ultrasounds I took them back to the medical centre I had been visiting regularly. The doctor who had ordered them was unavailable but I was assured that seeing any of them would be fine. The new doctor quickly scanned my results before telling me that I had no cysts and was therefore healthy and didn’t need to come back. I was shocked - I was still unwell and in a lot of pain but had just been told to leave without any further solutions or possible avenues for investigation. I asked to have my most recent urine and blood sample results checked over and as he read over the different tests one stood out to me: my blood iron levels were really good. This had nothing to do with my condition but as someone who has a history of low iron I was pretty happy and in the spirit of improving what was a pretty dire appointment I said that I’d let my dad know. Dad had been feeding me a lot of steak recently and would be glad to know it was achieving the iron results we were aiming for. What I hadn’t expected as a response to this was being told “Don’t tell you dad, he shouldn’t know you had a pregnancy test”. I was mortified. This doctor knew nothing about my relationship with my family and the degree to which I do and don’t rely on them or share medical information with them, but was encouraging me to keep secrets from my dad. The long saga of medical appointments had exasperated my emotional and physical health and I was now being told that it was something I was supposed to be ashamed of.
The next appointment was luckily a lot better, largely because I saw a woman this time who finally put her foot down on all of the stab in the dark diagnoses and treatments I had been given and referred me to a specialist. I’ll admit that going to the gynaecologist scared me a lot. The waiting list to see one at the public hospital was going to be upwards of six months long and I didn’t have health insurance so interacting with the private health system is terrifying. Luckily my mother is incredible and not only agreed to pay for a consultation but took the morning off work to accompany her dishevelled daughter to the appointment itself.
The gynaecologist was possibly the best doctor I have ever visited. She was calm, considered and encouraging, and she explained everything as we went along. When she diagnosed me with endometriosis I was so relieved. I finally had an answer and it was a word that I recognised. She explained the intricacies of the condition to me and how she wanted to manage it, providing me with a new birth control prescription so that I could skip my periods and hopefully experience less pain in the long run.
I’m still upset by what having the disease means for me but having an answer is a massive relief, more than anything I’m grateful for knowing what’s happening inside my own body. Endometriosis is a progressive and incurable disease so I know it’s going to continue to get worse but I also know that there are ways to intervene and help manage the symptoms. It could still impact my fertility but there are also surgical options to help me get pregnant if the disease starts causing problems in that area.
Admittedly I still worry I’m a big sook when I talk about my pain and experiences of endometriosis. I know that mine impacts my daily life a lot less than it can for other women and even writing this feels a bit extra – the internalised misogyny is real. But May 14th 2018, the day I was diagnosed, was also the day that the Federal Government announced that it would be creating a national action plan to address endometriosis. I’ve worked in politics for a while now: as a campaigner, a staffer, and now as a policy analyst in government relations, and I can tell you that action is only taken if we start to talk.
I have lived with endometriosis for eight years now and have known about it for the last three months. I have twenty-five to thirty-five years left before I reach menopause which means twenty-five to thirty-five years more endometriosis related pain and discomfort but learning about and sharing my diagnosis with the people around me is what has made it okay. I’ve learnt that one of my closest friends and her brother were both born to a mother with endometriosis who struggled to get pregnant before she had the surgery but easily carried children after. My lovely ex-office manager listened to me tipsily tell him that his adoptive children gave me hope that if I couldn’t have my own I could still end up with kids as amazing as his. When I mentioned my diagnosis to a couple of my work mates they surprised me by sharing their experiences with the same disease and other reproductive problems and we found support in solidarity. One in ten Australian women have endometriosis and talking to others is not only comforting but empowering.
If you want to learn more, visit Endometriosis Australia here.
Lizzie is a 20 year old Arts student and an experienced campaigner and advocate with a history of working in political organisations. Her main interests include health, education, and women’s policy and her strong feminist values inform all of her actions and thinking in these areas. She’s also a volunteer lifesaver because she knows you need something in your life other than politics and that something may as well be the beach.
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