Harriet believes the UK is facing a crisis in endometriosis care, with many patients who could benefit from cannabis treatment unable to access it.
“Everyone told me that this is just what periods are like, I remember thinking, is everyone curled up on the bathroom floor vomiting?”
Harriet, 25, has what she describes as a “classic endometriosis story”. She began having heavy periods aged 11 and would soon be sitting in class, watching the blood trickle down her tights.
“My attendance wasn’t great, I had time off pretty much every time I had my period, I always said I had a cold or food poisoning or something like that,” she says.
“I remember times where I had to leave school because I was in so much pain or bleeding so heavily.”
Harriet was repeatedly told by teachers and doctors that this was normal and at 16 was prescribed the contraceptive pill. She was able to complete her studies and a few years later left to study English and Drama, at the University of Bath. But while she was there she suffered a spine injury, which led to her being diagnosed with hereditary spastic paraplegia in 2018.
“It caused me to lose the sensation in my legs, I was having full body spasms where I couldn’t breathe, it was quite scary,” she recalls.
“That diagnosis answered a lot of questions, but I was still having these problems with my periods and being told that this was just how it was going to be.”
While she was in her third year of university, Harriet met a student with cerebral palsy, who self-medicated with cannabis.
“A lot of students would use cannabis at parties, socially, but this was the first time I had ever really heard of anyone using it for medical purposes,” she says.
“I remember sitting next to him at parties and he would have quite severe tremors, but when he was smoking you could physically see those traumas calm down, it was just incredible. That’s when I started using cannabis for the pain and spasms.”
She adds: “At this point, I had tried Gabapentin, pregabalin, Tramadol, codeine, co-codamol – and cannabis was the one thing that actually enabled me to live my life. I was able to graduate and get a job.”
But during the first year in her job, Harriet’s periods became so bad that she collapsed from loss of blood.
“I was bleeding through all of my clothes, we had to get a new mattress, it was just horrendous,” she says.
“I’m not shy about it, because I think people should know how horrendous endometriosis is, it is so often downplayed.”
She continues: “I went for a trans vaginal ultrasound scan, which was extremely painful. I was in tears while they were doing it. At this point I didn’t know that wasn’t normal for it to be that painful.”
A full body disease
The scan showed a large cyst, which was thought to be an endometrioma, as well as adhesions which were possibly related to endometriosis. However, Harriet wasn’t diagnosed with the condition until she paid to see a specialist privately, using the inheritance which had been left to her by her grandmother.
“I first started having problems aged 11 and I was diagnosed on my 23rd birthday. I had my first surgery in June 2019, where they removed quite extensive endometriosis,” she says.
“I started using cannabis a lot more after that surgery because I didn’t like the heavy pharmaceutical drugs that I’ve been offered, which I had awful side effects from.”
Harriet’s second surgery was delayed almost a year by the coronavirus pandemic, and she ended up having it on New Years Eve of 2020, where it was discovered the endometriosis had spread to her bladder and she was diagnosed with internal cystitis. She is currently recovering from her third surgery in under three years.
“One of those common misconceptions is that endometriosis only affects the reproductive organs,” says Harriet.
“It is its own tissue, which means it can travel anywhere. It’s a full body disease. I know people with spinal endometriosis, people who have ileostomy bags, it’s even been found in people’s eyes.
“Those who are leading in the field say that we have only scratched the surface of what we know about it because it has been neglected for so long.”
After leaving hospital following her second operation, Harriet stopped taking morphine and turned to cannabis to help her manage the pain. She got her private prescription in March this year.
Despite having developed a severe anxiety around medical professionals, from years of not being believed, she says she felt “validated” in her initial consultation.
“I have had both incredible experiences with health professionals and experiences that I could only call traumatising,” she says.
“I think it comes down to being somebody who has a reproductive health condition. Sometimes I have felt almost a resentment towards patients who have a condition that doesn’t get better.”
Harriet continues: “My first appointment at the cannabis clinic was one of the most pleasant experiences I’ve ever had with a medical professional. I felt really listened to and validated.”
However, Harriet’s prescription currently costs her around £300 a month, and for many people living with a long-term health issue, this isn’t feasible.
“I will advocate for medical cannabis all day long, but not everybody can afford it,” she says.
“Many people living with chronic conditions are unable to work. I had to leave my job and move back in with my mother at the age of 24.”
She adds: “I’m in a very privileged position financially, and in that I have an incredible relationship with my mother and a boyfriend who understands and advocates for endometriosis, not everyone has that support network. Not everybody is in the financial position to have access to something that could change their life.”
A crisis in endometriosis care
Endometriosis is thought to affect one in 10 women, and takes an average of seven years to diagnosis. These statistics could be worsening due to Covid, as the lengths of hospital waiting lists have reached an all-time high, with people potentially waiting years for major operations.
As endometriosis can only be officially diagnosed through laparoscopy surgery, who knows how many people are waiting for a diagnosis and suffering with debilitating symptoms, while they wait.
On top of this, new NICE guidelines published earlier this year also advise against the prescribing of opioid painkillers for those with chronic primary pain , defined as pain with no clear underlying cause.
“I think the UK is facing an endometriosis crisis at the moment, particularly as a result of Covid,” says Harriet.
“To get fast access to endometriosis care in this country you have to go private.
“It’s frustrating when you see so many other patients who are waiting for surgery, I know that some of the waiting lists for endometriosis surgery can be up to five years as a result of Covid, and on top of that patients are told they can’t take opiates.
“I think medical cannabis could be the answer to that.”
But unfortunately, only if you can afford it.
“That’s currently the law in this country; cannabis is a medicine if you have the means to afford it,” says Harriet.
“It can be such a battle, just to get the diagnosis and to get somebody just to listen. Then on top of that, you have to battle to get your benefits and then to try and get access to legal medicine.”
She adds: “I’m very aware, cannabis is not for everybody, because everybody’s endometriosis is different, but I think everybody should at least have the option.”
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