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Endometriosis

Lara Parker: “It’s hard to overstate the impact cannabis has had on my life”

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Lara Parker was diagnosed with endometriosis in 2013.

For Endometriosis Awareness Month, Cannabis Health caught up with LA author and editor Lara Parker about living with the condition and finding relief in cannabis. 

When BuzzFeed editor Lara Parker opened up about living with endometriosis in an article in 2014, she learned that there was power in numbers. 

She received the diagnosis less than a year before. But she had been battling excruciating cramps, painful sex and a raft of other debilitating – and unexplained – symptoms since her teens. 

It took seven years for Lara to be diagnosed with endometriosis. If that seems like a long time, it’s not, relatively speaking. Seven and a half years is the average length of time it takes for a patient to be diagnosed, despite the fact that the condition affects one in ten and around 1.5 million women in the UK.

Instagram: laraeparker

Since that first article Lara has become something of an icon for tens of thousands living with endometriosis and chronic illness – particularly women who feel silenced, disbelieved and let down by gender bias in the medical system. In 2020 her first book came out, aptly named Vagina Problems, chronicling her journey in an attempt to provide for others what she wished had been available to her.  

But there’s another reason Lara’s 50,000 plus Instagram followers show up (apart from the steamy shots). She openly, unashamedly, shares the therapeutic effects that cannabis has on her symptoms and overall health and wellbeing.

Living in Los Angeles she has widespread access to legal cannabis, but has still faced stigma and hid it from her doctors initially.

Speaking to Cannabis Health, she reveals how the plant has changed her view of conventional medicine and helped her take control of her own health.

 

CH: Can you tell me a little bit about your current diagnoses and what the journey was like to get to this point? 

Lara: My current diagnoses are endometriosis, adenomyosis, and overall pelvic floor dysfunction. It was a really long and difficult journey to receive these answers. I started experiencing severe symptoms that were disrupting my life when I was just a teenager — around 15 years old. It wasn’t until nearly six years later that I was given my first diagnosis of endometriosis after insisting that a doctor perform a laparoscopic surgery. Since then, it’s been a constant uphill battle to not only find doctors who are knowledgeable about these conditions, but who believed that I deserved relief.

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CH: How is your health at the moment and how do your symptoms impact your day to day life?

Lara: My health is up and down. I had a second surgery in January of 2020 to treat my endometriosis and my appendix was removed during this procedure. In some ways, I notice a positive change in my health since the surgery, but in many other ways, I am still struggling. 

I was put on an excessive amount of prescription drugs prior to the surgery and have spent the last eight plus months attempting to wean off of them. This has added so much stress and symptoms onto my life.

In the midst of COVID-19, I was living in the epicentre of the world for the virus for several months. I had to forgo getting care for my illnesses because of my fear of getting COVID and adding yet another health issue on top. The reality of the situation is that there is no cure for endometriosis. I am maybe better than I have been in the past, but I am still at the bottom of a mountain trying to climb my way to the top. 

Instagram: laraeparker

 

CH: How did you first discover the medicinal benefits of cannabis?

Lara: It was by accident, really. I just happened to be dating someone who enjoyed smoking cannabis and would do it fairly often. One day, I was having a horrific pain day when he suggested I try it out and see how I felt. The relief was immediate. I had never experienced anything like it before. After that I began to explore more. I went to dispensaries and asked them questions and I tested out any products that I could get my hands on. 

 

CH: How has it improved things for you? 

Lara: The better question would be how hasn’t it improved things for me? Cannabis has given me an appetite when absolutely nothing else has, it has given me an ability to orgasm in the midst of pelvic pain, it has helped my stress and anxiety levels in the midst of dealing with chronic illnesses, and has helped my pain levels like nothing else ever has. It’s hard to overstate the impact that cannabis has had on my life. 

 

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CH: Did you speak to your doctors about it and were they supportive?

Lara: At first, they were not. I was so excited to have found something that genuinely seemed to help me that I could not understand why my doctors weren’t feeling the same enthusiasm. I sort of stopped bringing it up and almost consumed it in secret for a while, but the more I experimented with it and the more it helped me, the more angry I became. 

I eventually chose to stop seeing any of the doctors who were unsupportive of my cannabis use. Now, when I assemble a new team of doctors or visit a new one I am very firm. I use this plant. It helps me. If you have a problem with that or make condescending comments about it, I will walk and I will no longer be a patient of yours – and I will make sure no one in my circle is either. 

Instagram: laraeparker

It’s past time for doctors to realise the medicinal benefits that can be found in this plant.

 

CH: Has it changed your opinion on pharmaceutical drugs and conventional medicine?

Lara: Yes, unequivocally. I was never a huge fan of ‘big pharma’ prior to discovering cannabis simply because it never really seemed to work for me. I was always left with an intense side effect or two which would then have to be treated with more pharmaceutical drugs. I was starting at a level of being in pain and felt like I just kept adding on layers and layers of other issues and it was extremely demoralising. 

I support ‘big pharma’ if it works for you, it’s absolutely someone’s own personal choice. What bothers me, however, is that many people aren’t even allowed access to cannabis to even see if it could help them in place of pharmaceuticals. It’s quite disgusting, really and I hope I see it change in my lifetime. 

 

CH: Living in LA where cannabis is easy to access, how does it make you feel that many other patients don’t have this?

Lara: It’s enraging. It’s mind-boggling that we have access to such an amazing plant and that others don’t simply because their elected officials don’t know how to read books and use their brains. 

CH: You’re very open about your cannabis consumption, have you experienced stigma because of it?

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Lara: Certainly, but not at a level that someone who was not white would, I am sure. I grew up in a very small, conservative town in the midwest and a lot of people there still associate cannabis with being some sort of murderer or dangerous person. This past weekend, actually, my parents received an anonymous note in the mail with a bunch of pictures of me smoking cannabis with the words “Are you proud?” written on each one. 

Instagram: laraeparker

 

CH: As someone with a large following on social media, how do you deal with people offering unsolicited advice and telling you how to manage your own health?

Lara: I have had to learn how to set boundaries and stick to them. I have had so many people get angry with me simply because I say to them, ‘I didn’t ask for your medical advice, and I don’t want it’. But it’s been absolutely crucial for me to do so. It’s very difficult to be inundated with commentary on your body constantly. If I wanted advice or help, I would certainly ask for it. 

 

CH: You’ve chosen to use your platform to help others, what impact does that have on you as a patient yourself?

Lara: It has given me the greatest gift of all; to know that I am not alone and that no matter where I am in my struggle, someone else is right there with me. There is power in numbers and I believe that our community is just getting started. 

 

CH: What needs to change about how healthcare treats people with endometriosis and other invisible conditions?

Lara: So much, we need a complete rehaul of medicine. We need patient-forward care. We need holistic approaches. We need medicare for all. We need western doctors to drop the narcissism and admit that they actually don’t have all the answers, not even close. 

CH: What is one thing you would like people to know about endometriosis?

Lara: It is a whole body disease that impacts every single part of someone’s life. It needs to be treated as such. 

 

Vagina Problems: Endometriosis, Painful Sex and Other Taboo Topics is available now.

Follow Lara on Instagram @laraeparker

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

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.

Endometriosis: A banner advert for The Medical Cannabis Clinic

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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