“It felt like my body was making decisions for me”

When I was a teenager, I remember being in so much pain from my period that I would curl up in a ball, feeling like I was just haemorrhaging blood. I had very heavy menstruation, going through jumbo pads within a few hours. I couldn’t wear tampons without leaking everywhere. The school system wasn’t very understanding. I got told off by teachers, labelled as lazy or melodramatic. But I was pretty good (or bad, depending on your point of view) at finding ways around systems, and by the time I reached the final two years of school, I chose subjects so that my timetable had lots of breaks in it, and got very good at forging mum’s signature for when I skipped class entirely.

When I was 24, I spent 6 months studying in Italy as part of my university studies. By this stage, things had changed. I no longer got the heavy menstrual bleeding, instead passing dark clumps, with lots of bloating, and sometimes even not passing anything at all, with just the feeling that it was happening internally.

That first laparoscopy, in 2007, found endometriosis everywhere, with chocolate cysts on both ovaries. I had what is called “stage 4 endometriosis”, which means severe disease with cysts and adhesions all throughout the pelvis and abdominal cavity.

After surgery, I had ongoing issues and even ended up back in the emergency ward with severe pain about 6 months post-surgery. But at that stage I was told that there wasn’t much more that could be done, and I had an interaction with my gynaecologist that saw me disengage entirely. He suggested that I have a child and I quote, “to give yourself something else to think about”.

For a few years, I went back to the bad habits I’d developed prior to diagnosis, numbing the pain with alcohol, and retreating from the world when it got too hard to manage. I was on and off the contraceptive pill. It was supposed to help manage my symptoms, but I’d forget to take it and end up stuffing up my cycle even more. I was also studying for a PhD, which in and of itself was very stressful, especially because I now know that I had undiagnosed ADHD.

Eventually though, the pain from menstruation got so bad again that I had no choice but to re-engage with the medical system. I was referred to a different gynaecologist this time, and scans again showed chocolate cysts on my ovaries. My second laparoscopy was in 2013.

I had some relief following that second surgery, but again, I was inconsistent with taking my prescriptions. If only someone had figured out that it was a working memory problem, and not just defiance. I was also still experiencing a lot of pain, and not just during menstruation. I’d get pain mid-cycle around ovulation, and pain with certain movements, I think because my abdomen was just a bunch of adhesions gluing everything together. I also experienced pain with penetration, and couldn’t wear tampons or tolerate certain sexual positions. Although by that time I was prescribed stronger painkillers, I didn’t like taking them because they made me loopy.

Eventually, I brought up the option of hysterectomy with my gynaecologist. At first, he was reluctant, but when an ultrasound showed that the ovarian cysts had regrown, he agreed that it was a good option for me.

I’m not really sure whether to call myself child-free or child-less. I decided not to try to have children, but it was a decision that seemed like it was made for me because of this disease, and while my life is pretty good without kids, I honestly don’t know which way I would have gone if the endometriosis hadn’t been a factor.

In 2019, I had a total hysterectomy including removal of my ovaries and cervix. Recovery took a while, but it was such a relief to not have that pain all the time. The surgical menopause though made my mental health plummet, and all of the coping mechanisms I’d developed for the undiagnosed ADHD just fell apart seemingly overnight. So that’s how I was finally diagnosed with that.

I was also starting to struggle with night sweats and poor sleep, and fatigue. I was put on hormone replacement therapy to try to counter that, but when whole-body pain joined the party, I eventually got diagnosed with fibromyalgia as well.

And, just for funsies, my endo story wasn’t over, either. Without menstruation, the most troubling symptom was the deep pain I’d experienced for years with penetration. I was by this stage seeing a different gynaecologist, this time because we had moved cities, and she decided to order a pelvic ultrasound to check for endometriosis of the bowel. She’d had other post-hysterectomy patients who’d had endo either missed or re-grow, and thought my symptoms sounded similar. She was right.

We scheduled surgery for October 2024, but unfortunately my specialist injured herself the week before and had to cancel all her surgeries. She eventually found someone to refer me on to, a specialist based in Sydney. I was given a tentative date of April 2025, but the new surgeon wanted to review my case and order more imaging because of my complex history. So, surgery was delayed until June. But of course it wasn’t that simple. Mother Nature had other ideas, and the day I was supposed to travel down to Sydney, a huge storm hit, and the only road in and out of town was flooded. Luckily this time the delay was only for a month. So, in July 2025, I went in for my fourth surgery.

Because of where the endometriosis was located, it was a complex procedure with the new surgeon, my usual gynaecologist (the one who had been injured the previous year), and a colorectal surgeon all in the room. Luckily, the bowel endometriosis was superficial, meaning it didn’t go all the way through the bowel wall. Endometriosis was removed from the vginal cuff, and from the uterosacral ligaments. They also found an Alan-Masters pocket, which is kind of like a retracted space or fold in the peritoneum caused by deep infiltrating endometriosis.

I’ve recovered well from that surgery, and haven’t had any pain with sex since, hooray! So, I’m hopeful that the endo is finally addressed, and I’ve only got all the other stuff to deal with.

-Olivia