Emma’s Story
From day one, my periods were unbearably painful. The pain was so severe it made me wonder, 'How do women have babies if this is what period pain feels like?' As a teenager, I was already eagerly counting down the years until menopause. For decades, I heard the same dismissive phrases: 'You just have a low pain threshold, take stronger painkillers' or 'Painful periods are normal, what you need to look at is your mental health.' But my experience was FAR from normal.
From an early age I wondered how my girlfriends sailed through ‘That time of the month’. It completely baffled me. I didn’t know anyone else who experienced the sort of regular pain and heavy bleeding I had.
My first period was so severe my Mum took me to a ‘gyno’. At 14, seeing a gyno is not a great experience, no matter how nice they are - you just aren’t comfortable with what’s going on ‘down there’. I was told I had an ovarian cyst and was sent away with ‘the pill’.
The pill made me very sick, so I came off that pretty quickly. The monthly onslaught of my cycle soon took its toll. My heavy periods required a lot of attention, finding excuses to leave class to go to the loo; mornings and afternoons spent in the school sick bay, days at home confined to bed unable to walk; vomiting and an abundance of painkillers, peppermint tea and hot water bottles.
I recall once being curled up on the bathroom floor at home, begging Mum to take me to hospital. All you want is for the pain to go away as quickly as it came, quietly creeping up on you; taking you hostage, only to subside once the painkillers eventually kicked in. I was having such trouble managing the pain that our family doctor prescribed me with super strong anal painkiller suppositories. I recall as a 15-year-old, wondering if any other students at my school had had a hard-core narcotic up their bum.
The fatigue is another story altogether - but what I can tell you is that I never truly felt well from the onset of menstruation. It was hard keeping up with school demands and social expectations. I experienced anxiety before every period, wondering how I was going to manage, particularly if there was something on like a formal, exams, sleepovers, a school camp, holidays, a play or dance I was performing in.
So let’s fast-forward to the age of 18 when I had an ovarian cyst the size of an orange. I was very sick. Mum rushed me to hospital and I had immediate surgery to drain the cyst. My recovery from the procedure was long and slow. While my friends were preparing for the HSC, I was recuperating at home, hobbling from bed to toilet to kitchen to bed. The surgeon’s report was that I didn’t have any signs of endometriosis. So from that point onwards, I would always state to all future gynos that when I was 18 a surgeon told me I didn’t have endo – it couldn’t be endo that’s causing my pain.
In my 20’s I tried the pill again. This helped for a few years - but eventually I got migraines from it and decided to go off the pill. I then explored naturopathy - which helped along with a regular meditation practice, yoga, massage and acupuncture. My periods became more regular in my 30’s because of alternative treatments (but were still painful, very heavy and at times unbearable).
I was like an army major, keeping a period calendar. Two days before my period I would start popping painkillers. This was the only way I could manage the onset of pain - ensuring the drug was cursing around my system prior to onset. And as soon as my period arrived, I would hit it hard with additional painkillers – sometimes taking a whole packet of 24 pills over 3 days to manage things.
Three weeks out of every month were difficult, due to ovulation pain, period pain; then a very sore abdomen and huge belly post period along with fatigue. Since the age of 14, I would have about one good week a month where I felt ok.
It took a very long time to find the right doctor. Finally, at 39, a brilliant gynaecologist changed my world, saying, ‘Emma, a lot can change over 25 years.’ She diagnosed me with Stage IV Endo, saying, ‘It's extremely bad – I'm not sure how you managed until now.’ I was completely floored. I cried for weeks after receiving the news, grieving the lost years spent doubled over in pain, desperately searching for answers. I realised how this insidious disease had infiltrated every aspect of my life, constricting my choices. But I also breathed a huge sigh of relief finally knowing what I was dealing with.
On another note, I have a sense that some friends and family don’t fully comprehend what I’ve dealt with, and may even think I’m a little bit delicate and fragile, however when I look back to everything I’ve gone through and how I never missed a day of work over 25 years due to my period - I feel perhaps the opposite might be true, it takes great determination, organisation and planning to manage ‘life’ with a chronic illness.
Since my diagnosis I’ve found another gynaecologist who during my first consultation, let me simply share my story with him. He was sympathetic, genuinely concerned, caring and understanding. It actually blew my mind and was very healing.
I feel the most important lesson from sharing this story with you, is that validation from the right professional is SO important. Us endo sisters need handling with care by doctors. We need gentleness, kindness and understanding.
