Breaking the “wall of silence” around endometriosis

Ruby Canning was nearly 12 when she experienced her first period. The sixth-generation beef farmer from western Victoria was at a cattle show with her family and was unprepared for the change in her body.

“Little did I know that my first period would be 15 of the most painful days of my childhood,” Ruby says.

For the next 10 years, Ruby visited multiple doctors to try and find a solution for her twice-monthly excruciating periods. She was repeatedly told that period pain was normal, and the only solution was the contraceptive pill.

“I explained to doctors my aunty has severe endometriosis, but I was never referred to a gynaecologist,” the 23-year-old says. “As time went on, no contraceptive pill worked and I had every possible side effect: nausea, anxiety, moodiness, vomiting. Each time I’d go to the doctor, so sick I couldn’t focus for my school exams, and I was told time after time those were normal side effects of the pill.”

The photographer was 21 when she was finally diagnosed with stage III endometriosis; a progressive, chronic condition where cells similar to those in the lining of the uterus — called the endometrium — grow in other parts of the abdomen.

It’s hard to understand what you can’t see; something well understood by those suffering from the invisible clenched fist of chronic pain and disease. Add the stigma of ‘women’s problems’ — conditions such as endometriosis and polycystic ovarian syndrome (PCOS) — and a wall of silence is built, brick by painful brick.

Endometriosis affects around one in 10 women. Symptoms can vary widely, including chronic abdominal, back and pelvic pain, heavy bleeding, bladder and bowel problems and extreme lethargy. It can also be a contributing factor of infertility.

The condition is usually diagnosed with a keyhole surgery called a laparoscopy, performed after a referral from a gynaecologist. With these health specialists few and far between in the bush, many women live with chronic pain, thinking the monthly agony is part and parcel of life.

Hayley Dawson was one of these people. The 26-year-old naturopath lives on a 1620 hectare cropping and prime lamb property with her partner near Glenthompson in western Victoria. Hayley specialises in managing conditions such as PCOS and endometriosis through her telehealth business, The Rural Naturopath, and has both of these conditions herself.

“I first heard of endometriosis when I was studying to become a naturopath and, honestly, I thought, ‘What a horrible condition’,” Hayley says. “As I learnt more about it, I realised I had a lot of the symptoms myself. When I first went to the GP they diagnosed me with PCOS but wouldn’t give me a referral to see a gynaecologist.”

PCOS is commonly associated with increased levels of insulin and androgens (hormones that promote masculine development). Symptoms may include excess hair growth, scalp hair loss, acne, irregular or infrequent periods, weight gain, difficulties with fertility and increased anxiety and depression. Experts don’t know what causes or cures the condition. 

After another year of pain and fatigue, Hayley decided things weren’t right. She went to another GP and pushed for a referral — securing an appointment with a specialist who diagnosed her with stage IV endometriosis and performed excision surgery.

“One of my biggest symptoms with PCOS is acne. It’s painful and so frustrating. It’s really affected my confidence over the years,” she says. “I have my endometriosis pain very well managed, though one of my biggest struggles is fatigue. I feel I’m exhausted all the time.”

Now, Hayley has a trusted GP, a gynaecologist, a naturopath and a pelvic health physiotherapist who all help manage her symptoms and flare-ups with a holistic approach. She uses nutrition as medicine, moves her body consciously and gets plenty of fibre, with things like oats, chia seeds, psyllium husks, slippery elm and flaxseeds keeping her bowels regular. She knows all too well how challenging it is finding rural specialists and securing appointments.

“When I was first diagnosed I was so emotional and recovery was quite slow and painful for me. I also happened to have my first laparoscopy during a busy time on the farm, so although my partner would check up on me, I felt isolated,” she says. “My mind would spiral into negative thoughts like, ‘Am I going to be in pain the rest of my life?’ and ‘Am I ever going to be able to have kids?’ After I healed I would travel two hours to see a counsellor and acupuncturist as there was no-one available closer.”

Rebecca Gilchrist is a clinical psychology registrar with a private practice offering face-to-face and telehealth appointments from her partner’s sheep station near Uralla in New South Wales. She chose to specialise in fertility and birth trauma after having a premature baby and witnessing the dearth of support in rural areas. Rebecca says chronic pain is incredibly complex.

“When we’re experiencing pain that is distressing, neural pathways form in our brains linking distress with pain. Then, every time we get distressed or feel a heightened emotional response, we feel that pain,” Rebecca says.

Rebecca uses cognitive behaviour therapy, an evidence-based talk therapy to help people cope with pain, as well as suggesting behavioural changes.

“I often start with foundational stuff: sleep, exercise and nutrition. If we have those stabilised, then it gives us a good place to start deeper therapy,” she explains. “Emotions are really normal; we have to have them. Anxiety is adaptive. It’s important to understand that over time, as a species, we have become more anxious as a means to keep ourselves safe. The process of therapy isn’t about trying to get rid of anxiety or depression, it’s about turning the volume down.”