Endometriosis
Endometriosis UK: A holistic approach needed for women
Endometriosis UK: After decades of living in the UK with unbearable pain every month, Amy Bowles was diagnosed with both endometriosis and adenomyosis.
Amy Bowles, 42, had always thought that she just had “bad periods.” She would be unable to walk or function in anyway for days at a time, sometimes with pain so bad that it caused her to black out.
“I’ve had heavy periods all my life and a lot of pain and discomfort,” says Amy. “I’d go to my GP, but I’d just be given painkillers. I moved around a lot when I was younger so no one noticed that I was saying the same thing.”
Although to her it felt normal being totally bedridden with pain, she met her current partner in her late 30s, who became concerned with how much she was suffering.
“He would tell me what had happened because I’d black out or not remember things, and he became really upset about it,” she describes.
“I thought this was just how periods were – I’d really normalised what was going on with me.”
In August 2019, her partner finally convinced doctors to help, and she underwent a laparoscopy. A number of cysts and fibroids were discovered on her organs, and Amy was diagnosed with stage four endometriosis and adenomyosis.
“It was a huge fight to get that diagnosis,” says Amy. “It was a relief and hugely validating to suddenly find myself in a room with doctors where I spoke the same language as them, because previously my pain hadn’t seemed like it was taken seriously.”
Endometriosis UK: Not widely acknowledged
Despite finally feeling validated with an actual diagnosis, treatments and services for gynaecology are extremely limited. Doctors are stretched, especially since the pandemic, with waiting lists soaring over 60 percent. According to studies, over 500,000 women are currently waiting for help.
Whilst she waited, Amy was prescribed opiates. “It does deal with the pain, but it’s highly dissociative,” she says. “I don’t like not being present in my life just because I’m in pain.”
Endometriosis “isn’t widely acknowledged as a chronic illness”, and so she feared she wouldn’t meet criteria for access to private clinics who prescribe medical cannabis outside of the NHS, but her doctor took her very seriously.
“I think I cried during my first consultation,” says Amy. “It was the first time I had had such a detailed conversation with a medical practitioner, who was interested in my pain, but also in my mental health and that was a revelation. She listened to me and it was hugely validating.”
Amy says her cannabis prescription has “completely changed everything”.
“Before my appointment I didn’t really know what to expect or what I was really asking them for, I thought I was asking them for pain management, but the doctor wanted to talk a lot about my mental health, which I thought was great,” she adds. “I’ve never been asked by a nurse or doctor how I am feeling.”
Now Amy is receiving treatment that not only helps with her pain, but also her anxiety.
Trapped in a cycle of chronic pain
She explains: “The main difference I have noticed is that I was trapped in a cycle of chronic pain, between the actual pain itself and the fear of the pain. Those two things just kept feeding into each other, so my symptoms were just getting worse and worse. Since I’ve started using cannabis it has broken that cycle.”
“My endometriosis can be quite unpredictable and can flare up without much warning. With the best will in the world, I can get eight hours of sleep a night, eat really well and try to reduce stress, but then one thing can trigger it. The cannabis is there when I need it,” says Amy.
“I’m not saying it has got rid of everything. It’s part of a multifaceted approach that I have taken to my health, but that treatment has enabled me to connect to the body and mind and realise that those things aren’t mutually exclusive. It’s enabled me to care for myself in a different way.”
Importantly Amy now feels she can open up to the people around her.
“Endometriosis is a very lonely disease. It’s only those who have it who really understand what you’re going through, so it’s very, very hard for many women and their partners,” she says.
“I didn’t tell anybody about it for a long time, but I’ve become a lot braver in the last year and I’ve started sharing it with people wider than my immediate family.
“I’m being reminded of times when I wasn’t able to walk or screamed the place down and woke everybody up, which I can’t even remember because every month when the period is over, you store it away and forget about it because you just don’t want to be ill.”
In the hope of helping other women, she is also telling more people about her experiences online.
“I’m very vocal about it, but it’s important for people to make their own decision. There’s a lot of stigma around cannabis and until it’s more widely accepted within our society, I don’t think women will seek it out or even know about it,” she says.
“I’m very lucky to have been able to pay for this, but now I would sacrifice other things to be able to access it, because it affects my quality of life so much.
“There needs to be a more holistic approach to women’s health, the way things are, doctors are only treating the pathology, not the person and that’s really what seems to be missing.”
