Charlie James loved her job as a lifeguard, along with running three or four times a week. But just over a year ago, the excruciating pain caused by a bad flare-up of endometriosis forced her to quit her job.
“The aches and the cramps were just really unbearable. “I couldn’t move from my bed. It was debilitating.”
The inflammatory condition causes tissue similar to those lining the womb to grow elsewhere in the body. The England women’s football captain, Leah Williamson, recently revealed she’s a sufferer and that she feared it would jeopardise her participation in last summer’s European Championship.
Charlie, 28, says being unfit for work made her “future feel bleak”. Over 10 years of suffering with the incurable disease, she tried many of the standard treatments, which not only didn’t ease the pain, but also caused significant side effects: at 25 she was told she had the bone density of a woman in her mid-50s.
So she searched out holistic therapies and says medicinal cannabis has now given her her life back. She’s recently started a full-time job as a medical secretary and is slowly getting into running again.
Charlie was amazed by how quickly it “significantly” reduced her pain. “I vape it, and instantly your body feels relaxed, you’re not achy or agitated anymore. It has a real calming effect on my nerves and calms the flare down. I would say using the medical cannabis reduces my pain by 85 to 90 per cent.”
In November 2022, Aimee Brown was said to have become the first endometriosis patient in Ireland to be granted a ministerial licence for medical cannabis. It came after six years of fighting for the prescription, while being forced to obtain the herb illicitly.
In the UK, while its use was legalised four years ago, for the majority of people, the only way to access it is through a private prescription – which isn’t cheap.
Medical cannabis can be prescribed on the NHS for a handful of conditions, including epilepsy, nausea caused by chemotherapy, and multiple sclerosis-related muscle spasms.
And while there is technically no restriction placed on what conditions these products can be prescribed for, the NHS website states “very few people are likely to get a prescription for medical cannabis”, with further clinical trials needed before they can be rolled out more widely.
The NHS states using tetrahydrocannabinol (THC), which is in most medical cannabis products, risks potential side effects, including pyschosis and behavioural or mood changes, as well as a small risk of addiction.
Free from medication
Endometriosis affects one in 10 women and the symptoms and severity can vary. Some common effects are: heavy periods; pelvic pain, pain during or after sex; feeling sick; constipation; diarrhoea; and difficulty getting pregnant.
A month after quitting her job, Charlie, from Sleaford in Lincolnshire, discovered early last year that the root of the agonising flare-up was an 8cm cyst on her left ovary, which can be caused by the disease. An operation – a laparoscopy, her second one – was not successful because there was too much inflammation for surgeons to remove the lump.
Oestrogen fuels the growth of endometriosis tissue, and Charlie had tried various hormone medicines and contraceptives that aim to prevent this, but she suffered weight gain and night sweats. It was taking Decapeptyl, a synthetic hormone, that caused a reduction in her bone mineral density.
Feeling desperate, Charlie began looking into holistic approaches to manage the condition, including an anti-inflammatory vegan diet. Her research led her to visit a private clinic to try medicinal cannabis in February last year.
Daily pain medication is now a thing of the past. “I have the odd paracetamol when it gets really, really bad, but I’m generally able to now avoid taking pills.
“I’m getting into running slowly, being careful not to over do it. It’s nice to be able to go out once or twice a week, even if it’s for a shorter time to exercise.”
Dr Luisa Searle, medical director at Lyphe Clinics, the private medicinal cannabis clinic where Charlie was treated, said many of its patients seek help for chronic pain and mental health. “Myself and my team see day in, day out what a difference medical cannabis is making to patient’s lives – Charlie being a prime example. Her story demonstrates that everyday people turn to us in their times of need and goes against a mistaken perception that cannabis is only for recreational purposes.”
Cost is prohibitive
The law in the UK changed after parents of severely epileptic children successfully campaigned for the Government to let them access medical cannabis. However, access was slow – three years later, only three prescriptions had been issued under the NHS – and many parents of children who have seizures are still facing barriers.
The figure for licensed cannabis medicine prescriptions on the NHS had jumped to 977 in 2021, according to the Cannabis Industry Council, which collected 105 responses from Freedom of Information requests sent to 152 NHS trusts across the UK. The health authorities could not confirm these figures nor how many endometriosis patients have had prescriptions.
In contrast, it’s estimated that more than 20,000 patients in the UK are privately prescribed cannabis. Campaigners argue that the cost of paying for treatment is prohibitive. The average cost is £200-£300 plus a month, with consultation prices from £49 to £200, according to Cannabis Health News.
It’s said those who can’t afford it are being forced into criminality. A YouGov poll, published at the end of last year, suggests 1.8m people with diagnosed medical conditions are turning to illegally obtained cannabis to manage their illness. Smoking cannabis has well-known health risks and turning to black market products can result in cannabis that is untested, contaminated, and incorrectly labelled.
Chronic pain affects an estimated 28 million people in the UK and opioid drugs were the most prescribed dependency-forming medications in England in 2021-22 with 39.6 million items, NHS data shows.
Research on cannabis and endometriosis
The NHS maintains that “there is some evidence medical cannabis can help certain types of pain, although this evidence is not yet strong enough to recommend it for pain relief”.
In 2021, a meta-analysis of previous studies on cannabidiol for the management of endometriosis pain found “a lack of clear evidence of benefit”.
However one study, published in PLoS One in 2021, investigated the effects of self-reported cannabis use in 252 participants with endometriosis. Researchers concluded that it improved pain, gastrointestinal symptoms, and mood deficits.
A recent review, published in Obstetrics and Gynecology in 2022, analysed data from 16 studies that investigated the effects of cannabis on managing gynaecological pain, such as chronic pelvic pain and endometriosis. Between 61 per cent and 95.5 per cent of participants reported pain relief.
Professor Mike Barnes, a neurologist and medical cannabis advocate, said: “Endometriosis is a common and sadly very debilitating and painful condition for many women. Standard treatment, such as prescription painkillers, can be helpful, but often is not. Cannabis is an effective painkiller and also can help sleep and anxiety, both of which can exacerbate the problem.
‘”Although legal to prescribe on the NHS, it is almost impossible to obtain a script. This is sad and very short-sighted, as this medicine will help many women and is likely to be cheaper than existing medication. There is no valid reason not to prescribe on the NHS as the evidence of efficacy and safety is now plentiful.”
He added that usually the best combination is a full spectrum oil that has both CBD and a little THC. “In that combination, there is no risk of the user getting high. There are usually no or very few side effects, although like any medicine, it is not suitable for everyone.”
Barriers to prescribing
Specialist doctors have individual choice over prescribing cannabis, but they should follow guidelines, including those issues by National Institute for Health and Care Excellence when making clinical judgements.
The health authorities are reluctant to prescribe because of a perceived lack of scientific evidence. A Department of Health and Social Care spokesperson – : “Licensed cannabis-based medicines are funded by the NHS where there is clear evidence of their quality, safety and effectiveness. We are taking an evidence-based approach to unlicensed cannabis-based treatments to ensure they are proved safe and effective before they can be considered for roll out on the NHS more widely.”
Some scientists argue that the focus on randomised controlled trials (RCTs) – long been considered the gold standard of medical evidence – in relation to cannabis-based medicinal products has led to very restrictive guidelines in the UK, which are limiting patient access.
Feature Image: Pexels
Image: Charlie James