By Rebecca Crockett
“I want you to imagine that you are walking in the most beautiful forest in the whole wide world.”
Hui-Ye, an intuitive healer, stands in the front of the room. Her eyes are closed, and her palms are spread out in front of her. In two sweeping motions, she traces some incomprehensible symbols in the air and then turns to light a stick of sage.
“You walk without pain, without discomfort, without endometriosis.”
Hui-Ye is leading a group healing session for a class of endometriosis sufferers. It’s a room full of people desperate for relief and searching for anything that will help.
“Gently, in your own time, return to the room and open your eyes.”
The room blinks back to the lime green walls of the yoga studio tucked away in an industrial estate fifteen miles west of Edinburgh. Some share sleepy glances, having fallen asleep, and others begin mutterings of wonder. One woman bursts into tears.
“I just felt like a weight had been lifted,” she says as Hui-Ye glides over to her yoga mat to comfort her.
I am at a wellness day event organised by Endo Warriors West Lothian, and this is just one example in a sea of lotions, therapies, and medicines marketed to women in pain. The event introduces endometriosis patients to holistic treatments to handle their disease. But why must they seek these treatments by themselves?
The pain and the shame of living with endometriosis
Endometriosis is a disease in which tissue from the lining of the womb grows outside the uterus, causing immense pain. These growths can attach anywhere in the body, like the ovaries, fallopian tubes, bowels, and in extremely rare cases, the brain. This condition affects around 1.5 million people in the UK, and yet, the average time it takes to get a diagnosis is nearly nine years in England and Scotland.
This trend reveals a worrying commonality for endometriosis patients: a shared experience of being ignored, shamed, and gaslit by the medical community about their illness.
Candice MacKenzie, 47, the co-founder of Endo Warriors West Lothian, said: “My symptoms started when I was about nine, beginning with bowel complications. By the time I got my period at 11, it was horrifying.
“I never got diagnosed till I was 21, which is pretty much the average diagnosis time for endo, sadly. But it wasn’t an easy diagnosis. It was challenging, offensive, upsetting, misleading, disappointing, and there was constant gaslighting.”
MacKenzie founded Endo Warriors – an independent support, awareness,s and action group for endometriosis sufferers – nine years ago, after she became frustrated with the lack of support that came with her diagnosis.
She still remembers how badly she was treated during a doctor’s appointment. “I came out, and my husband was sitting in the car waiting for me. The most horrible feeling of shame was over me because I had to sit there and tell him that, in their medical opinion, I had an issue with my perception of pain.
“You’re told that you’re wrong, that the pain is just in your head, and that somehow you’re not navigating this pain properly. That’s probably one of the most upsetting things you could say to a woman because the pain didn’t start in her head.”
The failure of traditional medicine…
A 2018 study found that people with endometriosis were six times more likely than people without this condition to use alternative health services to treat their symptoms.
Alternative medicines are meant to complement treatment plans laid out by medical professionals, but endometriosis sufferers are turning away from the system altogether due to their medical trauma.
This isn’t a phenomenon specific to endometriosis patients either. In November 2023, the i Paper reported how menopausal women are being advised by “menopause experts” to take black cohosh, a plant in the same family as the buttercup, and large amounts of calcium. One woman who followed this advice ended up with poor liver function and painful kidney stones.
Tracey Lindeman, author of BLEED: Destroying Myths and Misogyny in Endometriosis Care, believes that women are turning towards alternative medicines because they have run out of options. She said that the doctor-patient relationship breaks down, particularly for endometriosis patients, because of desperation and betrayal.
She wrote: “Endometriosis patients diverge from normal patient behaviour because many of us have learned not to trust doctors who’ve repeatedly failed us. By not giving them our unfailing devotion, we reclaim some of our power.”
…And the profits of the wellness industry
At the wellness event organised by Endo Warriors West Lothian, the talk turned to family members who had experienced a similar plight. Women in their families who showed signs but never had a doctor willing to find a reason behind their pain; mothers who would make a complicated cocktail of over-the-counter medication just to be able to do the school run; grandmothers who described a pain embedded into memories of youth, their experience of womanhood shaped by suffering.
For generations, endometriosis patients have been shouldering the burden of their treatment as the wellness industry profits. It was reported by the Global Wellness Institute that the Wellness Industry is now worth £4.9 trillion, with the figure expected to rise to around £8 trillion by 2028.
There is no doubt that there is a benefit to finding a balance between alternative and traditional treatment plans. But when some medical professionals continue to alienate their patients, you can’t help but think they are being forced into the arms of the wellness industry rather than choosing to do so.
Endometriosis sufferers are faced with a system that denies their pain is real. Female-coded illnesses are being relegated to low-priority conditions, and therefore, being a woman is seen as reason enough for a poor level of care. MacKenzie certainly thinks so.
She said: “I’m sitting here in my jammies because I feel like crap, again. I’ve felt like crap since I was 11 and somehow that’s absolutely socially acceptable. For women like us to be sitting around in our jammies all the time, hot water bottles stuck to us because… because what? Because we’re women?”
Before the wellness day ended, Hui-Ye led the participants in one final meditative practice designed to calm the nervous system. They breathed in collectively, inhaling the notes of jasmine and bergamot, and then breathed out. “My pain is valid,” they repeated in unison.
This article is part of the series Fobbed Off and Female: A series on medical misogyny. To read more inspiring stories of everyday women making a real difference in the world, be sure to check out the latest edition of Wempower magazine, listen to our podcast, or watch it on YouTube.
