Tess Corkish shares her experience living with a chronic health condition.
It’s hard enough fighting for a safe climate without having to fight your own body at the same time! I’ve been involved in climate activism since 2009 but I’ve had a longer battle with endometriosis. I wanted to share what that has involved, in the hope it will help others to get the care they need and deserve.
Endometriosis affects 10-15% of people with uteruses. It is a disorder in which tissue that normally lines the uterus (endometrium) grows outside the uterus. It can occur anywhere in the body – including in the brain – but it most commonly occurs in the abdominal cavity.
On Thursday the 22nd of June, I had an operation in Sydney. I had a laparoscopy that I’ve been putting off for almost 11.5 years. This was surgery that involved making four incisions in my abdomen, pumping me full of gas to first diagnose endometriosis, and then cut out any endometrial tissue that was accessible.
Flashback to January 2006, about half a month before my first period. I went to hospital with excruciating pain which was suspected appendicitis. They thought it might have been period pain, but I hadn’t had my first period and it was really severe pain. Turns out it was my first, but not my last experience of ovulation pain. I have lived through the past 11.5 years with awful cramps every single month, and sometimes twice a month with both ovulation and period pain. I was mocked in high school for not being able to deal with the pain, and I still sometimes wake up in the middle of the night crying in pain and I have to take drugs and lie there and whimper until the pain goes away.
When I left high school I investigated real options for dealing with the pain. Since then it has been a sequence of different treatments with a range of impacts on the pain and my life in general. I was put on the pill multiple times, but it either didn’t stop the pain or it gave me horrible side effects.
It took me six years to finish a three year degree and I dropped out of university three times in that six years. The first time, I dropped out of ANU and moved back home to Sydney to live with my parents because I had crippling depression and couldn’t sleep except between 7am and 2pm, and otherwise couldn’t get out of bed.
I’ve been on the Nuvaring which was expensive and frankly did nothing to deal with the pain. I’ve been on the Depo Provera shot which stopped a bit of the pain but which the doctor took me off because it can cause osteoporosis at my age.
In November 2015 I had the Mirena inserted. For the first week I was bedridden with cramping. Then for the next two months I had debilitating cramps every afternoon. Then it turned into every second afternoon, and then every third afternoon, and then after a year it was only two weeks a month and the pain wasn’t quite as bad as normal period pain. While I had it in I had an awful experience at university where I almost passed out in class and ended up throwing up in the toilets from pain which the doctor suspected might have been something bowel related, but it turned out it was just the Mirena again. When I went to a different local doctor to get a medical certificate for missing class once, he told me I should just use condoms and that I’m lucky I’ve only had this problem for a decade instead of 30 years before finally giving me the medical certificate.
I finally got the Mirena removed because it felt like it was going to perforate my uterus. This happened on Christmas Eve last year and my whole family missed Christmas mass and my parents and I had to drive to Sunshine hospital in Victoria at 9pm, only being able to go home at 5am. That was a fun Christmas. I had two young male doctors who’d never done a Mirena insertion or removal before. Who needs dignity when you can have medical care?
I finally got the laparoscopy done last month. My belly was covered in incisions and I was bloated from the gas they had to fill my body up with (which takes 2-6 weeks to dissipate) and I felt like absolute crap, but I also felt so bloody triumphant. The laparoscopy confirmed what I suspected but had no proof of beforehand – I am living with endometriosis. I know what I have and I don’t feel weak or pathetic. I feel so reassured and affirmed in my experiences.
This isn’t the end for me though. In order to manage the endometriosis I need to be on some kind of hormonal birth control. I had the Implanon inserted while I was under the knife. To be honest, it’s birth control roulette and since its insertion I’ve had pimples all over my forehead and I’ve been really anxious. I have to choose what side effects I can live with and go with that hormonal contraceptive: there aren’t any new ones to try. It also means that I will probably have to have periodic laparoscopies during my life, depending on whether the tissue continues to grow and what effect the contraception has on me. Having a baby can stop it reoccurring, but that’s a long way off for me, and it doesn’t always work. Hysterectomy also doesn’t work.
I’m well into recovery now, and it’s been over a month. I’m back at football (AFL) training and the pain only bothers me sometimes (though I had a really bad period that lasted over a week and a half). It’ll take 3-4 periods for me to know how effective the surgery is, so I’m just looking forward to October when I’ll hopefully have my first painless period ever.
Endometriosis symptoms include:
- Painful periods (dysmenorrhea)
- Pain with intercourse
- Pain with bowel movements or urination
- Excessive bleeding
If you’re dealing with these symptoms, you’re not crazy, you’re not a wimp for not being able to deal with the pain, and you’re not broken or pathetic. You should see a doctor as soon as possible. Don’t let them talk you out of getting proper treatment, because I put it off for 11.5 years and I regret it every day.
For more information head to Endometriosis Australia.
About the author
Tess Corkish is a 24-year-old environmental activist and digital campaigner who finally graduated in May 2017. She’s been volunteering with the Australian Youth Climate Coalition since 2009 and has been working at Catholic Earthcare Australia for the past three years. She also works on Indigenous justice, LGBTIQ+ issues and gender equality. She’s a scholarship recipient in the 2017 Women’s Environmental Leadership in Action Program.