Do you have endometriosis and use cannabis to manage your symptoms? Here’s how you could take part in new research.
Researchers from Western Sydney University and the University of New South Wales are keen to find out more about the potential use of cannabis to manage endometriosis pain.
They are looking for participants from across the world, who have been told by their doctor they have the condition and who consume cannabis – either through a prescription or illegally – to manage symptoms.
Results of this survey will help design an upcoming clinical trial to explore the effectiveness of medicinal cannabis for endometriosis.
Endometriosis is the second most common gynecological condition in the UK, affecting around one in 10 UK women – although frequent misdiagnosis and a lack of understanding means this figure may be higher.
Despite its prevalence, according to Endometriosis UK, it takes an average of seven and a half years from onset of symptoms to get a diagnosis.
It happens when tissue similar to the lining of the womb starting to grow in other places, such as the ovaries and fallopian tubes, causing inflammation, pain and the formation of scar tissue. A wide range of debilitating symptoms include pain in the lower abdomen and back, nausea and intense fatigue.
There is currently no cure for the chronic condition and treatment is limited to painkillers, hormonal contraception, or surgery.
However, there is a growing amount of anecdotal evidence for the efficacy of cannabis in managing some symptoms such as pain and nausea, with some early suggesting cannabinoids can help with stopping the endometrial cells from multiplying, regulate nerve growth and reduce inflammation.
Researchers in Australia hope to continue to increase the information on cannabis use for endometriosis, and to plan a clinical trial to investigate the safety, tolerability, and effectiveness of a standardised and quality assured medicinal cannabis product for pain and associated symptoms.
This survey is open to patients worldwide who must fulfil the following criteria:
- Aged between 18-55 years of age
- Been told by your medical doctor that you have endometriosis
- And you must have used cannabis or cannabinoid-based products (eg CBD, cannabis oils, dried bud (flower) with known levels of THC and/or CBD, or non-legal cannabis) in the past three months specifically for the purpose of managing your endometriosis pain or related symptoms.
The survey expires on 31 March 2021, find out more here
Click here to participate
Medical cannabis and managing symptoms of endometriosis
An expert discusses the role of cannabis in managing symptoms of endometriosis
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).
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).
Does CBD affect endometriosis?
Always Pure Organics’ research assistant Alexandra Gkoutzidou explores the evidence behind the use of CBD to treat and manage the symptoms of endometriosis.
What is Endometriosis?
The endometrium is the lining of the uterus that hosts the zygote after fertilisation of the egg. If the egg does not get fertilised, meaning does not embed itself to the endometrium, the endometrium sheds off, causing menstruation.
Then the endometrium will be reconstructed in expectation of the next zygote and shed off again if that does not happen. The endometrium, therefore, is destroyed and reconstructed every month.
When endometrium cells grow in different part of the uterus (other than the endometrium lining) or even the body, this is called endometriosis. The endometrium cells will shed and regrow every month no matter their location in the body, causing lesions, painful periods (dysmenorrhea), pelvic pain, infertility, or subfertility.
Statistically one in 10 people with a fertile uterus suffer from endometriosis, but its cause is not clear yet.
The role of the endocannabinoid system
It appears that the endocannabinoid system (ECS) plays an important role in the normal processes of the female reproductive system[3, 9].
Studies show that proper regulation of the ECS is important to maintain a healthy regulated reproductive system. It has been observed that endocannabinoids’ and their degradative/oxidative enzymes’ expression fluctuate in the female reproductive organ in accordance with the stage of the menstrual cycle.
The levels of these endocannabinoids are raised to increase fertility during ovulation and then fall during the luteal phase of the menstrual cycle. Research has shown that this fluctuation of the ECS is not as well-regulated for people suffering from endometriosis.
The results have shown that people with endometriosis have low amount of CB1 receptors in the uterus and abnormal levels of endocannabinoids in their blood during their menstrual cycle.
Evidence shows that in the reproductive system, the use of cannabinoids operates in more than one way.
The way the cannabinoids operate in this system is related to both the amount of expressed cannabinoids and also in the phase of the menstrual cycle. The use of cannabinoids to treat endometriosis, is therefore a complicated case and in such cases it is important to consult a doctor instead of self-medicating, because high levels of the “wrong” cannabinoid, or even at the wrong time of the month could possibly affect ones fertility or cause other gynaecological issues.
What does the evidence say?
McHugh et al , researched the effect of THC and N-arachidonyl in the migration of endometrial cells in an animal cell culture. It was observed that while the above two cannabinoids induce migration of the endometrial cells, CBD prohibits it. While this research gives way to more in-depth research for the effect of CBD in human endometriosis, it does not provide sufficient data to claim that CBD is beneficial against endometriosis.
There are two clinical trials currently taking place, researching just that. The first is an open label phase II trial, studying an 1:1 ratio of THC and CBD administered to endometriosis patients to reduce hyperalgesia.
The second is a phase III double blind placebo study, where patients will receive norethindrone acetate, a type of hormonal treatment, in accompany with 10 or 20mg of CBD for the management of endometriosis pain.
Regardless, a lot of people are already using cannabis and/or CBD to treat the pain derived from endometriosis. Research that took place in Australia investigated the self-management strategies amongst Australian women with endometriosis . This online research was published on social media and invited women to share their own methods of treating their endometriosis symptoms.
The authors suggested that the anonymity of an online research could increase engagement, due to the fact a lot of people use illegal substances to treat pain symptoms. The most common strategies used were self-care and lifestyle choices like heat, rest and meditation, but the most highly effective rated self-reported methods were cannabis, heat, hemp/CBD oil, and dietary changes.
Anecdotal evidence suggests that the use of CBD, THC and possibly other cannabinoids could help treat the pain related to endometriosis, but given the role the ECS has in the uterus there should be more in-depth research in order to realise the factual role CBD plays in endometriosis (if any). The pain sensory system is different to the reproductive system. The role of CBD in pain is well understood and the analgesic effect of CBD in endometriosis pain is probably related to it instead of an effect to the endometrial cells [5, 10, 11].
Nonetheless, CBD has been shown to have positive effects for patients with diseases related to ectopic movement of cells in the body, like cancer and psoriasis. Indeed, CBD has been shown not only to inhibit some cancer cells growth, but also to mediate these cell’s movement to other parts of the body (metastasis) [14, 15, 16].
Similarly, psoriasis is a disease which one of its symptoms is the over production of new skin cells too quickly, that causes the scales. In that case, CBD has been shown to positively affect the skin making it more elastic, better hydrated and reducing the amount of scales by promoting the balanced production of cells and minimising the ectopic production . Similarly, CBD could possibly benefit the ectopic production of endometrial cells but it is yet to be researched.
The levels of cannabinoids in the uterus are strongly related to the phase of the menstrual cycle and they are formed so to increase fertility [9, 13]. Therefore, it is ill advised to use any cannabinoids if you are trying to get pregnant or have a related health problem without advising your doctor and testing whether the endocannabinoid levels are correct during your cycle. A well balanced ECS is the target so always follow the dosage directions.
 doi: 10.1002/bies.201100099
 DOI: 10.1089/can.2016.0035
 DOI: 10.1177/1933719114533730
 DOI: 10.11607/ofph.1274
 doi: 10.7417/CT.2019.2116
 DOI 10.1186/1471-2202-11-44
 DOI: 10.1007/s13105-018-0611-7
 doi: 10.17305/bjbms.2018.3532
 DOI: 10.3390/ijms2115540
Lara Parker: “It’s hard to overstate the impact cannabis has had on my life”
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.
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.
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.
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.
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.
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?
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.
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
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