My story is one of convincing doctors that I was suffering and that my pain wasn’t only in my head.
My pain first begun during my first period. In 2007, I was in grade six of primary school and felt a stabbing pain inside my tummy. It was something that I had never felt before and made me feel like I was being torn apart in side. This was the first time I heard the words “welcome to womanhood, this is a normal part of being a woman”. I accepted that for the rest of my life, once a month, I would have to take two or three days out of my life to lie in bed and cry. I missed school, social events, sporting activities and family gatherings because I was a girl that suffered from ‘period cramps’, something that most girls go through, or so I was told.
In year seven, my ‘period cramps’ became so bad that I was sent to the emergency room. Within a couple of hours I was having my first surgery, at the age of 13, due to a suspected appendicitis. The surgery went fine and within a couple of days I was pain free again. There were no signs of an appendicitis and the pain was put down to ‘period cramps’. I continued to suffer pain every month and became more and more fatigued and weak.
In year eight, I was admitted to the emergency room again with severe pain and was diagnosed with a Mycoplasma infection causing chronic fatigue syndrome and adrenaline fatigue syndrome. This resulted in years of chasing doctors around, begging them to ‘fix’ me. I saw physiotherapists, sport physiologists, specialized general practitioners, naturopaths, neurologists, Chinese medicine practitioners, endocrinologists, and the list goes on. Any recommendation that I received, I tried.
In year ten, I was once again admitted to the emergency room with severe abdominal pain, and underwent my second surgery searching for what was believed to be an infection in my intestines. I was discharged a few days later, after no sign of infection was detected, and diagnosed with severe ‘period cramps’.
My pain continued every month and my other symptoms worsened. My fatigue and weakness was extreme, I could hardly get out of bed. I was experiencing extremely low pressure, body aches, insomnia, migraines, nightmares, itchy skin, nausea, dizziness, faintness and suffered from a very weak immune system. It seemed that every bug that was brought in to my home, I suffered from ten times worse than anyone else in my family. We kept on searching for answers and begging people to help. We saw new physiotherapists and neurologists and added psychologists, optometrists and vascular surgeons to the list of opinions we heard.
In year eleven, in May, I was diagnosed with depression and anxiety, in June I was diagnosed with complex regional pain syndrome, in August with Ehlers-Danlos Syndrome. I had a bunch of fancy diagnoses, a handful of tablets I took each day and did start feeling better. Some of the treatments worked, a lot of them didn’t and a lot of people told me that the pain was just in my head. None of the treatments lasted though, so I never felt like I was better again – something always seemed wrong.
Just like most other teenagers, year twelve was one of the most stressful years of my life. My fatigue, insomnia, nightmares and dizziness all got worse. I was suffering from weird stress and low immune system related symptoms such as body ulcers and slow healing wounds. It was a nightmare navigating year twelve school life, social activities and health problems that no one could see. On the outside I looked fine, on the inside I felt my body was attacking me. I kept searching for answers and saw nutritionists and new psychologists as well as what felt like a million other specialists from various fields. I also sought help from alternative practitioners such as hypnotherapists and kiniseoligists, but nothing seemed to work.
When I was 19 I was sexually assaulted, which changed my life drastically. I lost lots of friends and my mental health plummeted. I could now add suicide attempts and PTSD to my mental health rap sheet. One of the positive things this did for me though, was cause severe pelvic pain. As I didn’t mentally connect the lasting pelvic pain with the assault, I believed it was still just the ‘period pain’ I had always suffered from. When I was admitted again to the emergency room with the same usual symptoms, but this time also with pelvic pain, the doctors finally started searching in the correct direction. In June of that year I had my third surgery and was finally diagnosed with endometriosis and poly-cystic ovary syndrome. In July of that year, I had my fourth surgery and finally had the endometriosis removed.
Unfortunately though the surgery wasn’t done properly and some endometriosis was left behind and the scar tissue started causing pain. In that same year, I was diagnosed with vaginismus and vulvodynia. My pelvic pain remained severe, I was unable to sit without pain and couldn’t even think about using tampons. I saw physiotherapists, psychologists, myotherapists, acupuncturists, hydrotherapists and chronic pain specialists. I spent weeks in different hospitals. They all helped, but no one could ‘fix’ me. At the end of that year I tried Botox in to my pelvic floor, to try to reduce the signals that my pelvic nerves were able to send, but this only caused more pain.
In my third year out of high school, I was still suffering from pelvic pain, fatigue, body aches, low blood pressure, depression, anxiety, PTSD, insomnia, nausea and dizziness. I was suffering from extreme bouts of constipation and then I stopped being able to urinate. I later found out that this was because the endometriosis had grown around my urethra. I can remember lying in a hospital bed, crying from pain after my fourth internal examination in three days, begging anyone to do another surgery. I knew there was more endometriosis in side of me, but all of my doctors agreed that it couldn’t have grown back that fast and the pain was in my head. Eventually, my fifth surgery was performed as I could no longer walk from pain, as my ovary had completely adhered to my uterus. The year this happened, I was diagnosed with Fowler’s Syndrome and begun seeing the Chronic Pelvic Pain Clinic at the Royal Women’s Hospital.
I spent the next year believing that this would be what the rest of my life would be like. I had good days and weeks. I could go to university and I could travel, so life wasn’t that bad. Yes it sucked constantly being in pain, taking 12 tablets in the morning and 10 at night, still having to see psychologists, physiotherapists, pain specialists and hydrotherapists all the time, and not being able to do some of the stuff my friends could do, like ride a bike or catch public transport (which usually made my pain worse because of the bumpiness). Yes, I missed my best friend’s and almost all my friends 21st birthday parties, am holding a hot water bottle in all of my own 21st birthday party pictures, had been carried off of trams by tram drivers because I fell down with pain, had to be picked up from the middle of the city by my parents at 2am because I couldn’t walk from the pain while everyone thought I was just drunk, but life wasn’t that bad. It felt like everyone kept telling me that the pain was mostly in my head and that I had to count my blessings, so I did. I worked so hard on my mental health and my social health. I created an Instagram account to create awareness about the conditions from which I suffered and created a petition to increase government funding for research on endometriosis. I sold yellow pom-poms online to raise awareness for endometriosis and donated the money to endometriosis charities. I held morning teas at my house for my friends and organized an endometriosis awareness and empowerment event at a local bar, for my community.
The following year, in 2017, my fourth year out of high school, I was having regular in-hospital ketamine treatments to calm my nervous system and had some pelvic nerves burnt to ease my pain. Then I found a gynaecologist, an endometriosis specialist, who finally believed me. He told me that he had heard versions of my story a million times before and that he could help me. I had surgery with him in June, which helped for a while. The pain came back strongly early the next year and after a four and half hour surgery in April 2018, I finally heard the words I had been waiting eleven years to hear, “I found it”. My endometriosis had grown all the way up to my ureter, an area no one had explored before. This surgeon has meticulously searched for every endometriosis cell in my body and didn’t underestimate the pain even a few cells left behind could cause.
By the middle of 2018 my mental and physical health were amazing. I had undertaken 6 weeks of the chronic pain clinic at Camberwell Epworth which consisted of an hour a week each of physiotherapy, exercise physiology, psychology and occupational therapy. I was off almost all of my meds and I couldn’t remember a time that I had felt better. I had been awarded a prestigious scholarship to study and work in the Indo-Pacific region and so decided to move abroad.
I spent a year abroad, feeling the best I had in so long, before the twitches of pain begun again. It was nothing serious, I didn’t have to take pain killers, but I knew it was growing back. Between my first feeling of pain and my return to Australia, I only spent four or five days in pain bad enough for medication. My ovary had re-adhered to my uterus and the endometriosis had begun growing back, so I underwent my eighth surgery in May, 2020. Now I am completely back to the full functioning, physically and mentally, that I experienced for those amazing two years. Endometriosis is an illness that will continue to grow back for the rest of my life, but I am not longer scared by it. I was told so many times that the pain I felt wasn’t there, by so many different doctors across so many different fields of Western and other medical practices, that I started to believe that it was in my head. Even now, it is hard for me not to question if I had made it up, after so many years of professionals telling me that I had, but now it is easy to answer that question confidentially with a no. Just because I spent half of my life being told that what I was experiencing was a curse of womanhood, that I am making it out worse than it is, that it is in my head and that I need to see a psychologists, that I don’t look sick, doesn’t mean that it is true.
Endometriosis is real. My experience is real. Pain that causes you to spend days in bed, every single month, is not normal and is not a part of being a woman. Just because we don’t look sick, doesn’t mean we aren’t sick. Just because we are in pain now, doesn’t mean we won’t get better.
If you’re out there and thinking that this is how your life will be for the rest of your life, I understand. I have been there. Please don’t give up, because it does get better.