Anna began experiencing intense, gnawing pelvic pain three years ago, during her second year of law school. Every month, it felt as if someone was plunging a knife into her abdomen over and over. Painkillers had no effect and being upright during the stabbing sensations was virtually impossible. On her worst days, she passed out from the pain; sometimes it brought on a migraine or vomiting. She saw doctor after doctor, was shuttled around hospital departments and sent home with diagnoses that ranged from constipation to Irritable Bowel Syndrome (IBS).
“I asked the doctors for an ultrasound and they refused because they thought I just had piles or constipation,” says Anna, a 26-year-old law associate.
The pain became a weekly occurrence that disrupted Anna’s ability to study for her law exams or simply get out of bed. “When the pain came on, I felt like I was dying,” she said.
During one Christmas, Anna’s sister-in-law found her on the bathroom floor, crying out in agony and vomiting from the pain. “She said to me, ‘this isn’t a normal amount of pain’,” says Anna, “we need to sort this out.”
The doctors finally relented and ordered an ultrasound, and after months of waiting while her GP and the hospital argued, a scan and MRI were performed. There was an orange-sized fibroid in the wall of Anna’s uterus. “The surgeon told me I needed to have surgery the next day because the fibroid could explode inside me,” she says.
The surgery was invasive and traumatic. To access the back wall of Anna’s uterus, the surgeon had to slice the entire way through her abdomen and uterus, leaving Anna with a huge scar and the inability to ever have a natural birth. She was bed bound for a month, delaying her final law exams and the start of her job. “I had been working towards this job for six years, it was such a depressing stage of my life,” she says.
The pathology report from the surgery showed the lump was actually an adenomyoma, not a uterine fibroid. Adenomyosis, as Anna describes, is the “sister disease” to endometriosis.
Endometriosis is a chronic reproductive condition that affects one in 10 women, but a lack of awareness has meant doctors struggle to identify the disease. “Endometriosis occurs when tissue, which is similar to the lining of the womb, grows in other parts of the body,” explains Ema Taylor, a naturopath who specialises in women’s reproductive health. “This tissue undergoes the same menstrual changes as the tissue inside the uterus, but unlike period blood, it has no way of escaping, so it builds up, causing problems such as pain, scarring and inflammation.”
Adenomyosis is a lesser known, very similar condition, but instead of tissue growing outside the uterus, it grows into the uterine wall. The two conditions can occur at the same time and both have similar presentations: heavy periods, intense pain, fatigue, migraines and infertility.
To combat the risk of an adenomyoma growing again, Anna’s gynaecologist suggested going on the Marina coil, a hormonal intrauterine device that’s inserted into the uterus, where it releases the synthetic hormone progestin. “I had always been advised by doctors not to go on any hormonal birth control because I’m badly affected by hormones; I get very emotional and sensitive and have severe premenstrual syndrome (PMS), which is fun for no one involved,” she says. “It was a really difficult decision, having to decide, essentially, between my mental health and my physical health.”
Anna’s gynaecologist warned her that without the coil, an adenomyoma would most likely grow again, and the only real “cure” for her was a hysterectomy. It’s a bleak diagnosis for a 26-year-old woman who wants a large family, but during Anna’s darkest hours of pain, she often thinks it might be her only option. She’s not alone in this. In an essay published in 2018, Girls creator Lena Dunham said she had a hysterectomy after years of struggling with the pain associated with her endometriosis. Her announcement fuelled a series of headlines and think pieces about the little-known disease and female chronic pain in general.
“Historically, women’s health has been neglected in terms of research,” says Ema. Indeed, women have been woefully underrepresented in global medical research, leading to big gaps in data that obscure the true burden of reproductive conditions like endometriosis and adenomyosis. While the disease has been known to medical professionals for more than 100 years, it has mostly been ignored and chronically underfunded worldwide. In the UK, less than 2.5 per cent of publicly funded research is dedicated to reproductive health and, globally, there is five times more research into erectile dysfunction, which effects 19 per cent of men, than into PMS, which affects 90 per cent of women.
The gender gap in medical research goes some way to explain why it takes an average of 7.5 years for a woman to be diagnosed with endometriosis and why complaints are consistently attributed to either normal menstrual function or conditions like IBS. A 2017 report in the UK found that 40 per cent of over 2600 women surveyed with endometriosis needed 10 GP appointments or more before being referred to a specialist. The landscape in Australia has scarcely been better, with the health minister issuing a national apology in late 2017 for the lack of awareness around the disease and announcing the first ever National Action Plan for Endometriosis, which launched in July 2018.
“On behalf of all of those in parliament and all of those who have been responsible for our medical system, I apologise,” said health minister Greg Hunt. “This condition should have been acknowledged at an earlier time in a more powerful way, and it will never be forgotten again.”
Since her first surgery, Anna has undergone a second operation to remove a cyst on the wall of her uterus, but even with two surgeries and an adenomyosis diagnosis on her medical record, she has still experienced dismissive assumptions from doctors. At her last hospital visit, she was diagnosed, again, with constipation and sent home with laxatives, despite taking paperwork that outlines her medical history. Listening to her story, it’s difficult to imagine how Anna has any faith left in traditional medicine; it’s difficult to imagine, even, how she has battled through this without experiencing some sort of break down.
The repeated dismissal of Anna’s pain is certainly not an anomaly. Even within the small scope of researching this article, every woman I spoke to had experienced repeated misdiagnoses. Their stories point to a wider culture of disbelief around women’s health.
Alice Williams is a 27-year-old endometriosis sufferer and the founder of Ovira, a small wearable device that stops period pain by sending safe-level pulses of electric vibrations to block pain signals from entering the brain. Williams’ story, leading up to her creation of Ovira, is as peppered with disbelief and condescending misperceptions as Anna’s.
“I’ve heard it all,” says Alice, “I was told I had chronic fatigue, was depressed and put on antidepressants, and that I had IBS and told to take Metamucil — I actually walked out of that appointment literally laughing to myself at how absurd the doctor’s diagnosis was.”
Like Anna, Alice experienced debilitating pain that disrupted her daily life. “I would keep a strict calendar of when my period would land and would cancel and make up excuses as to why I couldn’t go to social occasions,” she says. “I felt like ‘period pain’ wasn’t a valid excuse, and when, on the odd occasion, I explained my situation I was met with ‘just take a few pain killers’. If only it were that easy.”
Frustrated with the lack of treatment options that typically encompass either the contraceptive pill or keyhole surgery to remove excess tissue, Alice eventually took action into her own hands, researching alternative pain management methods. “That’s how I discovered TENS (Transcutaneous Electrical Nerve Stimulation), which is the treatment that Ovira harnesses,” she says.
Alice considers Ovira more of a community than a brand. “Being validated in your experience is really crucial to coping with what we go through as women,” she says. “I want to combat the historical ‘taboo’ nature of talking about periods and provide a safe space for women to come together and talk about it.”
Comforting as it is that communities such as the one built around Ovira exist, the lack of research, data and education around female reproductive conditions has bred a system of misunderstanding and isolation. If we cannot recognise these diseases for what they are in hospitals and doctors’ surgeries, how are women expected to speak openly about them in the workplace, for example?
Both endometriosis and adenomyosis are progressive disorders, making early detection and treatment crucial. Delayed diagnosis doesn’t just burden women with the physical cost of years of pain and decreased quality of life, but a monetary cost of thousands of dollars for repeat consultations with specialists, imaging scans, and ineffective treatment and medication, not to mention those who are robbed of their ability to work due to the pain.
The research and stories point to something frustratingly simple: When women tell us about their pain, we need to listen.
Endometriosis natural pain management
A recent study published in the International Journal of Fertility & Sterility showed that probiotics may help reduce pain in women suffering from endometriosis. Another study, published in the American Journal for Obstetrics and Gynaecology, suggests good bacteria in the digestive tract may help the body deal with inflammation caused by endometrial cells.
Tried and tested by us: IMBIBE Beauty Renewal Probiotic Concentrate
TENS (Transcutaneous Electrical Nerve Stimulation) device
Originally designed for women in labour, TENS devices send small, safe electrical vibrations that stop pain signals travelling to your brain. They also help your muscles in the uterine area relax, creating a numbing sensation.
Tried and tested by us: Ovira
DIM (or diindolylmethane) is a plant-based chemical found in cruciferous vegetables like cauliflower and broccoli. It helps the body metabolise excess oestrogen, avoiding the development of oestrogen dominance, which linked to endometriosis. The supplement has not been widely studied in those with endometriosis and evidence for its effectiveness is found mostly from personal accounts.
Tried and tested by us: Jarrow Formulas DIM + CDG
Women with endometriosis are often lacking in magnesium due to the oestrogen dominance associated with the condition. During menstruation, women’s magnesium levels can be reduced by up to 50 per cent, further depleting their supply. Magnesium helps to relax muscles and reduce cramping, so it’s important to keep levels high to minimise pain.
Tried and tested by us: Magnesium applied externally via bath salts and body gel for immediate relief
While there is no “cure” for endometriosis in Western medicine, Eastern medicine considers the disease a sign of inhibited, stagnated blood, which can be effectively treated with acupuncture. Recent studies have begun to show that acupuncture is effective in reducing pain related to endometriosis.