I remember back to when I was in high school and crying to my mum that I was in pain because of my period and wanted to stay home. She allowed days off when needed but explained that period pain was just a way of life and that I needed to get on with it. How were we both supposed to know that the level of pain I was experiencing wasn’t normal?
At 18 I remember going to the doctor and explaining that my periods caused immense pain. Over the next two years I was given numerous reasons for my pain; Irritable Bowel Syndrome, sexually transmitted disease, that it was normal, that I didn’t have a high pain tolerance and finally my favourite; that it was all in my head. I had all the tests done and all came back normal. I was referred to get an internal ultrasound, from which the nurse told me “there’s nothing wrong with you” in a condescending tone. And finally given birth control to stop my periods.
I remember believing that I was crazy and weak, at the same time silly and attention seeking. I was powerless. All the health professionals I’d seen, told me that I was fine. It must be in my head if I was feeling such a high level of pain for no reason. I had lost faith in my body and had even less in my mind.
At 20, I tried a new doctor and she mentioned “Endometriosis” to me and referred me to the Canberra Endometriosis Centre. I remember crying in the car after that appointment, from relief that there was a name for my condition and in terror after reading more about Endometriosis.
At my appointment at the Canberra Endometriosis Centre, Endometriosis was explained along with the treatment pathways and management strategies. I finally felt empowered, scared but confident that I had been right knowing that something was wrong when so many medical professionals doubted me.
From there I was referred to a specialist and I was so excited for the appointment, hoping for a clear path forward. The specialist was dismissive, downplayed my symptoms and told me to get back on birth control. The appointment I had waited months for and lasted only minutes, managed to crush me yet again.
I remember seeing a new doctor and after mentioning Endometriosis, he opened his medical journal to research what it actually was. He told me I was young, probably don’t have it and that I should be able to get pregnant straight away to cure it. Needless to say I didn’t go back there.
I sought out a new gynaecologist. She was incredible and referred me straight away to a specialist in Sydney for surgery. She once again, instilled faith in me that I knew my body best and respected my decision for wanting relief rather than a bandaid “cure”.
I saw the specialist in Sydney and he scheduled me for a Laparoscopy in 3 months’ time. I was excited and terrified at the same time.
During the 3 month wait for surgery, my pain became progressively worse. I lived my life on a 50/50 timeframe, where 50% my life I was a normal 21 year old, could party with my friends, exercise and live a normal life. The other 50% I was in so much pain I couldn’t stand straight, often couldn’t move from the couch and spent my time paralysed by pain. My beautiful boyfriend (now husband) would drag our mattress into the loungeroom and I would lie there for days, not even able to move to make myself food. I would be exhausted but unable to sleep due to the pain so existed in this in between state of pure survival.
I remember drawing up my calendar for university and blacking out the week before and the week of my period. I had to rework my due dates so that they wouldn’t coincide with the weeks where I wasn’t able to function.
I felt so alone. My friends couldn’t understand why I could seem so normal then cancel plans last minute. It became easier to not organise anything and I began distancing myself from those around me.
Finally, I had my surgery, the trip to and from Sydney was horrendous, but I’d done it! I couldn’t wait for a pain free life.
Recovery from the surgery took about 6 weeks, and exactly 12 weeks from my surgery date, the pain reappeared. Devastated does not even begin to describe how I felt.
The next year, I simply survived. On the outside, I looked fine. On the inside, I was in pain 100% of the time, in varying degrees. I managed life, developed an extensive list of pain medicines and survival methods.
I was back to my 50/50 lifestyle but this time with an added side effect: cyclic depression. It really was a terrifying time. My period would end and the sky was clear, I’d be happy, mostly pain free and would make the most of it: exercising, cooking, seeing the few friends I had left. As my period drew nearer, my pain would increase, the heavy clouds of depression would move in and I’d retreat into my shell. It was exhausting.
It was during this time, we had decided to try for a baby. I had been told by multiple medical professionals that having a baby cures Endometriosis and as someone who always wanted to be a mum, this sounded pretty good. The downside was sex was horrendously painful and the pain would last days afterwards. My boyfriend felt terrible and it was a rocky time for our relationship. We tried for 8 months and finally fell pregnant. Unfortunately, it ended in a missed miscarriage, ending in a very difficult miscarriage that spanned over 4 weeks and finally landed me in hospital after a rushed trip to emergency.
It wasn’t long after this that I heard about a new specialist in Canberra. I booked in straight away and saw him within weeks. We scheduled the surgery and I was again filled with hope of a normal life.
The recovery from this surgery was rough, the surgery lasted 4 hours and was much more extensive than they had assumed it would be. I developed a slight infection but after about 6 weeks, I was back at work and life was brighter.
My periods always remained painful but gone was my 50/50 life. I would need a few days on the couch at the start of my period but recovered well. I still had pain every day but it was manageable, so long as I took care of my body.
I had to be careful with everything I ate, how I exercised and how I rested.
I remember slipping down the stairs at the zoo on a class trip and having a week long flare that left me in bed. Looking back, I realise my life wasn’t normal, I had flares that left me in a codeine haze and couch bound but overall, my life had improved significantly.
I finally had my normal life!!
About 7 months after my second laparoscopy, I fell pregnant again. And this time it was truly meant to be. We welcomed our gorgeous boy, Harry, in December 2017 and our life was complete. We were married, had our baby that we’d tried so hard for and I was mostly pain free, for the first time in 10 years.
My life looks a bit different these days, I still struggle with pain on a daily basis but it is manageable. I’m plagued with almost constant fatigue which inhibits my ability to work a full-time job, but I now have a small but successful photography business. In between work, I’m a stay at home mum and our lives are filled with a lot of love.
I look back and I’m not sure how I managed it all. Living such a pain filled life, but still working full time while pregnant, completing a university degree, being a good partner and raising our gorgeous boy, I am proud of myself. The future is terrifying, who knows how it will progress, but I am strong and will take it in my stride.
My pain is currently increasing, and I am on the wait list for another surgery. I take it slowly, I am careful, I rest when I need and take pain relief instead of trying to soldier through. I still struggle with my mental and physical health and my life looks a lot different to other women my age. Pain is my reality but, in the end, compared to where I was and what my life was like, I am grateful and proud.