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Endometriosis

My endometriosis was misdiagnosed as an eating disorder

Sophie underwent a laparoscopy in December that revealed she had stage four endometriosis.

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Endometriosis: A woman on top of a tall rock raising her arms in celebration of having reached the peak of the mountain
Sophie says cannabis helps balance things out and gives her more energy to do the things she loves.

Endometriosis is a painful, long term condition affecting one in 10 women in the UK. Sophie Harrop talks to Cannabis Health about coping with pain, cannabis and living with a hidden illness.

Endometriosis is a condition where tissue similar to the lining womb starts to grow in other areas of the body. It can grow around other organs causing chronic pain. The condition leaves patients in debilitating pain, feeling sick and with difficulty getting pregnant. It can take on average seven years to diagnose in the UK.

Sophie was diagnosed with endometriosis in 2015 after experiencing pains in her side and severe fatigue which meant she slept a lot.

“I got diagnosed by laparoscopy in 2015 after I developed really bad period pains in the right side of my body. I started to feel like something wasn’t right as I was getting a lot of pain so I decided to go to the doctors,” she said.

“I got lucky in that some people can have endometriosis and wait up to eight or 10 years to get diagnosed but it only took me a year. I’m very grateful for getting to that point because it was very stressful.”

Doctors initially assessed her in terms of her weight and diagnosed her with an eating disorder.

“I’ve always been very thin but I eat like an animal, I just have a high metabolism,” said Sophie.

“When I went to the doctors, they thought it was something to do with an eating disorder or Irritable Bowel Syndrome (IBS). There were so many different things that they suggested to me.”

Her doctor suggested she keep a food diary so they could track the amount she was eating. The diary proved that she was eating as much as she said, but she was disheartened.

“I can’t express to you how much I have something wrong with me, but it’s not an eating disorder,” Sophie continued.

“I’m quite a strong-minded person but to others who aren’t, I feel it’s very damaging. People are brought up to think doctors are always right, but I was annoyed they were coming up with these things.”

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Sophie had a laparoscopy in December 2020, which revealed she had endometriosis across her bowel and bladder. The condition is measured in different stages, that map the depth and areas affected by the tissue.

Sophie was told she was stage four which means it is the most severe. At this stage, endometriosis is now widespread and deeply implanted. There may also be cysts on one if not both ovaries.

CBD store owner Sophie in a field of hemp plants

Life with endometriosis

Sophie had been brought up to be a “tough cookie” and hadn’t realised how bad things were until her laparoscopy. She says her mother also struggled to believe that the pain was that bad, until her scan.

“I never realised how bad it was until the laparoscopy,” said Sophie.

“In your mind, you start to wonder if you have made it up, and my mum never believed me. She came into my room afterwards in disbelief at how bad it was.”

She added: “At the time, I was working at a builder’s merchants as a marketing manager. I was the only woman among 22 men, with a very strict boss. If I had days where I didn’t feel well, he would tell me to get into work. It was hard to be around all these men because I was in so much pain and no one understood it. That’s what I find with endometriosis, it’s so hard to express how you feel.”

Sophie, described a feeling of heaviness, she explained: “When it’s bad, I get this feeling as if I am 90 stone. It’s a feeling like I have something attached to me pulling me down. People can’t relate because no one knows what this feels like, but when you find other endometriosis sufferers, they understand.”

Endometriosis, mental health and ADHD

Sophie now relies on a combination of both medical cannabis and CBD to help her symptoms. She has also been diagnosed with Attention Deficit Hyperactive Disorder (ADHD) and finds this combination of eases the different symptoms of both conditions.

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At the time of her laparoscopy, Sophie was already consuming cannabis. She explained that the nurses laughed at her when she said she would prefer to treat her pain with cannabis, rather than the prescription drugs she was being offered. It was a chance encounter with CBD that piqued her interest in what cannabinoids could offer.

“My friend’s dad opened a CBD company and introduced me to it. I had a really bad sunburn with very badly burned thighs. He gave me a little pot of cream which I applied then the next day it was gone. I had to find out more about it, she says.

“Since then I have done a lot of studies and nearly completed a course on medical cannabis and CBD. I spend every day of my life learning more about it.”

The mental health impact of endometriosis which is another area which Sophie feels is misunderstood. She uses CBD to help her mental health, but finds that THC is more effective in helping the pain caused by the condition.

“People don’t understand the mental factor of endometriosis. It’s triggered by stress, so if I’m going through stressful periods in my life then I am more bed-bound and in a lot of pain. I notice with my menstrual cycle that somedays I have days where it feels like the world is against me.

“I take CBD every day without fail but when I had a couple of days off THC, I noticed the pain was still there in the same places, but it was sharper. It was like I had barbed wire in my stomach that was on fire.”

Chronic illness and sports

Sophie is an incredibly active person who takes part in a range of sports, especially hiking which she shares on social media. She wanted to show that not all chronic illnesses are visible and that patients should not be judged by what they post online.

She has now opened an online store and uses her platform to educate customers about the benefits of CBD. She isn’t motivated by the money when it comes to being in business, but wants to provide enough information to empower people to make their own decisions about their health.

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“I get a lot of people who say to me that I haven’t got endometriosis, and that I’m not chronically ill by judging me off my social media. It frustrates me because I would never wish the pain or illness on anybody.

“The reason I go out and do these things is that I have a lot of drive and could be in so much pain but will still get up and out as I would rather be in nature. It makes me feel physically better than sitting in my bed,” she said.

“I want to educate people to have the confidence to go try cannabis. Everyone is different and I want to be able to give people the confidence to do their own research and understand their own bodies. I’m not anti-doctor as I wouldn’t be where I am today without my gynaecologist and my amazing surgeon but at the same time, I wish people would think for themselves rather than just going off the doctor’s opinion.”

When it came time to choose the products she would work with, she immediately knew she wanted to include CBD coffee.

“I have my own coffee brand. The reason I introduced coffee into it was that I would always forget to take my dose in the morning but then in the evening, I’m fine. I created the CBD coffee because I thought it could be added into your life quite easily.”

Sophie finds the CBD industry incredibly rewarding to work in.

“I’m so passionate about this industry, she adds.

“People say to me that I’m literally the happiest person ever, but everyone has bad days. We have to have the bad days to appreciate the good days. I definitely feel my happiness and energy comes from cannabis and its helping to balance everything out.”

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Endometriosis

“The UK is facing an endometriosis crisis” – could medical cannabis be the solution?

Medical cannabis patient, Harriet, on why the UK is facing a crisis in endometriosis care.

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Endometriosis: woman sad comtemplative looking out the window alone.

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.”

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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.”

Discovering cannabis

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.”

Validation

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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Endometriosis

Endometriosis patients report cannabis helps pain and gastrointestinal issues – study

“Inhaled forms had higher efficacy for pain, while oral forms were superior for mood and gastrointestinal symptoms.”

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A new Australian study revealed that patients with endometriosis effectively manage their pain and other symptoms with cannabis.

Endometriosis is a condition where tissue similar to the lining of the womb grows around other organs in the body. It is estimated that it takes seven and a half years to diagnose someone with the condition in the UK. Some of the symptoms include severe pain, period pain, difficulty getting pregnant, feeling sick and pain during sex.

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Endometriosis study

The researchers examined the self-reported efficacy of cannabis among 252 Canadian patients with endometriosis. The patients had legally obtained cannabis products that they used at home while reporting symptom changes over time on an app.

The patients record 16,000 cannabis-use sessions over three years through the app for researchers to analyse.

Endometriosis management

The results showed that participants found their cannabis use was effective for helping with endometriosis-related pain and gastrointestinal issues. They also reported improvements in their mood following consumption.

Some of the symptoms monitored by the researchers included: cramps, pelvic pain, gastrointestinal pain, nausea, depression, and low libido.

The majority of patients stated their preferred method was inhalation. The researchers noted that: “Inhaled forms had higher efficacy for pain, while oral forms were superior for mood and gastrointestinal symptoms.”

The authors wrote:

“With emerging evidence internationally demonstrating that women are utilising illicit cannabis as a self-management strategy for the pain and the associated symptoms of endometriosis, this paper demonstrates that Canadian women are also utilising legally obtained and quality-assured products to manage endometriosis symptoms across domains such as pelvic pain, gastrointestinal symptoms and mood.”

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“Clinical trials investigating the tolerability and effectiveness of cannabis for endometriosis pain and associated symptoms are urgently required.”

The study titled: “Effects of cannabis ingestion on endometriosis-associated pelvic pain and related symptoms,” appeared in PLoS ONE journal.

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Endometriosis

Medical cannabis and managing symptoms of endometriosis

An expert discusses the role of cannabis in managing symptoms of endometriosis

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endometriosis
Endometriosis occurs when the lining of the uterus (the endometrium) grows outside of the uterine cavity

An Australian survey of women with endometriosis stated that 13 percent use cannabis to manage their symptoms, pharmacist Dr Stacia Woodcock discusses the findings.

Endometriosis occurs when the lining of the uterus (the endometrium) grows outside of the uterine cavity in other areas of the body, most frequently involving the ovaries, fallopian tubes, and pelvic lining.

The primary symptoms of endometriosis are pelvic pain before and during menstruation (including painful urination  and defecation), pain during sexual intercourse, nausea, fatigue, and infertility.

Treatment most commonly includes non-steroidal anti-inflammatory drugs and oral contraceptive therapy, which have been shown to be most effective for only mild to moderate endometriosis symptoms.

The high incidence of pain associated with endometriosis and the limited treatment options currently available make cannabis an attractive option for many women looking for symptom relief. 

This national survey of women with endometriosis in Australia provides an interesting insight into the use of cannabis for the self-management of endometriosis symptoms.

Sinclair et al. conducted a three-month online survey of Australian women aged 18–45 years of age, with a surgically confirmed diagnosis of endometriosis to assess the use of self-management treatment modalities for endometriosis symptoms, including the use of cannabis. 

Among the 76 percent of women who reported using some form of self-management treatment for endometriosis, 13 percent reported using cannabis for symptom control.

Study participants rated the effectiveness of cannabis for pain reduction on a 10-point scale, with 56  percent of patients also reporting a decrease in pharmaceutical treatment by at least 50 percent.

In terms of pain relief, cannabis was found to be the most effective treatment modality, showing greater efficacy than other self management interventions such as heat or dietary changes. 

The greatest alleviation of symptoms with cannabis use, secondary to pelvic pain, were seen in insomnia and nausea/vomiting. Adverse effects associated with cannabis were reported at 10 percent, compared with higher rates seen in alcohol (52.8 percent), exercise (34.2 percent), yoga/Pilates or heat packs (15.9 percent).

Limitations

This survey opens the door to some very interesting questions regarding both the use of cannabis medicinally as well as the way cannabis is viewed as a treatment modality. 

The inclusion of cannabis in the survey as a “self-management tool” alongside lifestyle interventions, such as exercise or yoga, or recreational substances such as alcohol rather than as a pharmaceutical intervention is counterintuitive to the understanding of how cannabis works within the body.

Continuing to classify cannabis in this manner undermines efforts to legitimise its use as a clinical treatment option rather than a recreational lifestyle intervention.

Additionally, the survey limited participation to patients with a surgical diagnosis of endometriosis. 

This is significant in that endometriosis is historically challenging to diagnose, with estimated incidence of undiagnosed endometriosis at 11 percent of the population and time from presentation of symptoms to a definitive diagnosis averages six to 11 years for most patients.

This means there is likely a large population of undiagnosed patients self-managing endometrial symptoms, as the delayed diagnosis can result in significant deterioration in patient quality of life and disease progression.

The use of cannabis within this study population is likely much higher than the survey indicated, as patients with a surgical diagnosis are much more likely to have been given pharmaceutical interventions than those without a definitive diagnosis.

Cannabis use within the surveyed patients is very poorly defined, which presents another challenging factor in evaluating its effects.

The primary dosage form of cannabis used was inhalation via smoking, which is the shortest-acting dosage form available for cannabis administration and does not represent the ideal duration of action for symptom relief of a disease associated with chronic symptoms. 

Additionally, the amount of delta-9-tetrahydrocannabinol (THC) and cannabidiol present in the cannabis used by survey participants was not quantified, which also affects patient outcomes based on the variable pharmacology of different cannabinoid ratios within the body.

The reporting of tachycardia, drowsiness, and anxiety as the most common side effects of cannabis use indicates high THC cannabis is likely for the majority of patients, as these side effects are typically associated with increased levels of THC.

This presents an additional concern as THC activates GPR18 receptors, which have been associated with an increase in the migration of endometrial tissue when stimulated, meaning that

until further studies can investigate the role this plays in the progression of endometriosis, caution should be used with high THC ratios of cannabis so as to prevent the possible exacerbation of the disease.

Finally, it is important to note that only 13 percent of surveyed patients who used self-management treatment options reported cannabis use.

Australia legalised medical cannabis in 2016, but did not include chronic pain as a qualifying symptom for treatment.

This means that physicians cannot recommend medical cannabis to patients with endometriosis through the existing legal program in Australia, which limits patient access to illicit market products that have not been tested and regulated. 

It also indicates a huge knowledge gap for both patients and healthcare practitioners when it comes to the use of cannabis for the management of endometriosis symptoms.

Clinician oversight needed to incorporate medical cannabis into endometriosis treatment

In conclusion, the use of cannabis for endometriosis symptom management appears to be an effective alternative to traditional self-management treatment options, especially when it comes to decreasing pain, nausea, and insomnia. 

However, the lack of education and clinical studies surrounding the different cannabinoid ratios

and their possible effect on endometrial tissue presents a challenge for patients and practitioners seeking to incorporate medical cannabis into endometriosis treatment in a safe and effective way.

Patients are largely flying blind and potentially putting themselves at risk for worsened disease progression when they choose to use illicit cannabis for the self-management of their endometriosis symptoms.

Dr Stacia Woodcock is director of education at the International Research Center on Cannabis and Health in New York.

This article was originally published in the American Journal of Endocannabinoid Medicine (AJEM). 

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