November 27, 2024
Guest post written by Chiara Toscano, recent Dietetics Graduate from the University of Ottawa
Endometriosis is a chronic, inflammatory disease, commonly cited as one of the most painful medical conditions, causing extreme pelvic pain among other symptoms. For many women, it can feel like a battle fought in silence - a chronic disease with no cure, causing debilitating symptoms that healthcare providers often brush off. Despite the burden these symptoms cause, Canadian women have an average delay from the start of their symptoms to an endometriosis diagnosis of about 5.4 years. That means that on average, Canadian women are living with Endometriosis for more than 5 years before they are diagnosed. This may be in part due to the stigma surrounding periods in general, as studies suggest that there is a greater delay in patients choosing to consult physicians for this diagnosis because they may not know what a ‘normal’ amount of period pain is, and because they fear their pain might be invalidated.
In your search to find relief from endometriosis symptoms, you may have come across countless social media posts, articles, etc. sharing pills, supplements and diets that promise to cure your endometriosis or vastly improve your symptoms. In particular, anti-inflammatory diets and cutting out foods to reduce inflammation have been popular right now. But what does the science have to say about the role of nutrition and lifestyle in endometriosis management? Is there really one cure-all, magic supplement that will completely conquer your symptoms? If it seems too good to be true, it likely is. In this post, we’ll discuss evidence-based nutrition and lifestyle changes that may help you manage your endometriosis symptoms, as well as some common myths and misconceptions.
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Many of the studies cited in this post refer to people with a uterus as ‘women’ or ‘females’. We recognize that not all those born with a uterus identify as women and that not all women have a uterus, for a variety of reasons. Anyone with a uterus can experience endometriosis and endometriosis-related symptoms. For convenience, we will refer to people with endometriosis as women in the following article, with the understanding that gender exists on a spectrum beyond traditional binary concepts.
Endometriosis is a condition in which cells from the lining of your uterus (called the endometrium) implant in your pelvis or other areas outside of your uterus. These are referred to as endometrial lesions. These lesions react to the hormones that cause your menstrual cycle, like estrogen and progesterone. They grow and bleed in response to your cycle, just like your uterine lining does. This bleeding is thought to cause inflammation and scarring, from which many of the symptoms of endometriosis derive. Some classic symptoms include extremely painful periods which interfere with daily life, pain during, before or after sex, infertility, pain when going to the washroom, fatigue, and heavy menstrual bleeding, among many others. Symptoms are very much dependent on where these lesions are in your abdomen - some may have lesions on their large intestines, leading to a symptom often talked about online, ‘endo belly’ or severe abdominal bloating.
The cause of endometriosis is still somewhat unknown. We do know that there is a hereditary component; having a close relative with endometriosis greatly increases your risk of having it as well. Currently, the most agreed-upon hypothesis is that endometriosis is caused by ‘retrograde menstruation’, that is, uterine tissues depositing into the abdomen by going upwards through the fallopian tubes during menstruation.
Those suffering from endometriosis know that it can have a profound impact on quality of life and overall well-being. Research shows that it hurts social relationships due to a lack of understanding and support from others, feelings of shame associated with the condition, and symptom burden leading to isolation and loneliness. It also harms sexual health and satisfaction. Unsurprisingly, those with endo experiencing pelvic pain have greater rates of depression, anxiety, and emotional distress when compared to a healthy population. Endometriosis has also been associated with worse sleep quality (which in turn worsens pelvic pain). It may also increase the risk of suffering from eating disorders and certain cancers (particularly certain types of ovarian cancers).
In terms of economic costs, a study done in 2010 in Canada found that the estimated annual cost of endometriosis was $5200 per patient or a total annual cost of $1.3 - 2.4 billion dollars to Canadian society.
Obtaining an endometriosis diagnosis can be complicated and time-consuming. It can technically only be diagnosed through surgery, in which surgeons will observe the abdomen for lesions and take biopsies. It can sometimes be diagnosed through pelvic ultrasounds or magnetic-resonance imagery (MRI), however, these are not as reliable since certain types of endometriosis don’t show up on imaging. This can further delay diagnosis and lead to patients being told that they don’t have endo when they in fact do. Oftentimes, endometriosis will be diagnosed based on symptoms alone, but this method may lead to misdiagnosis.
There are four stages of endometriosis; minimal, mild, moderate and severe. These stages are based on the amount of lesions in the abdomen, not the severity of your symptoms. In other words, someone with mild endometriosis could experience debilitating, chronic pain that prevents them from doing their regular activities, whereas someone else with severe endometriosis may experience minimal symptoms. Endometriosis can also be divided into subtypes based on its location in your body. Superficial endometriosis is found mainly on the surface of the lining of your abdomen. Cystic ovarian endometriosis or endometrioma are lesions found in your ovaries. Deep infiltrating endometriosis is found in organs such as the bladder and bowels.
As we’ve discussed, endometriosis is a complicated condition. There are multiple subtypes, and symptoms exist on a spectrum. Depending on the severity of your endometriosis and the location of endometrial lesions, each person’s experience of endo is unique. Now that we’ve covered the basics of what it is, let’s explore what the science has to say about managing endometriosis symptoms through simple nutrition and lifestyle changes.
Endometriosis is described as a chronic, inflammatory pelvic condition. Inflammation is a major factor responsible for causing endo-related pain. Studies do show that certain foods and dietary patterns may help reduce inflammation. Some studies have looked at vitamin C and vitamin E supplementation for those with endometriosis. This is because these vitamins have a known antioxidant effect, and therefore could reduce pain in endo patients by reducing inflammation. A study compared these supplements with a placebo and found that vitamin C and E supplementation for 8 weeks significantly reduced period pain, pelvic pain, and pain during sex in those with endometriosis. Instead of supplementation, you could try incorporating more vitamin C and E-rich foods in your diet, as these are readily available in plenty of foods. Vitamin C is found in citrus fruits, green leafy vegetables and colourful vegetables and food sources of vitamin E include plant-based oils, nuts, seeds, colourful veggies and dark leafy greens.
Herbs and spices also have well-known anti-inflammatory effects, which again could theoretically be helpful for those with endo. Those with the most well-documented anti-inflammatory effects include thyme, oregano, basil, rosemary, mint, sage, curcuma (aka turmeric), dill, cinnamon, parsley, ginger, and pepper among others. In particular, turmeric has well-studied anti-inflammatory effects. To increase your absorption, be sure to add some black pepper to your turmeric-containing dishes. So, adding herbs and spices to flavour your dishes not only tastes great but may help with some endometriosis symptoms.
What about your morning cup of coffee? Is it helpful or harmful for those with endometriosis? Well, the answer is a bit complicated. In short, it depends on the person. Teas and coffee contain substances known as polyphenols. These compounds have antioxidant properties, which could theoretically contribute to reducing inflammation and therefore improving symptoms in those with endo. On the other hand, teas and coffee also contain caffeine, and a study has shown that higher caffeine intake (greater than 300mg per day) may be related to the development of the disease. An intake of less than 300mg/day, however, was not linked to an increased risk of developing endo. Another complication is that for some, the caffeine contained in teas or coffee may trigger inflammation, which may worsen symptoms. Your best bet is to play around with the type of caffeinated beverage, the amount, and the timing to see how your body reacts. Keep in mind that in Canada, the recommended maximum daily intake of caffeine is 400mg for adults and 300mg for those who are pregnant or breastfeeding.
Polyunsaturated fatty acids (‘PUFAs), including omega-3 and omega-6 fatty acids, are found in things like fatty fish, plant-based oils, flax seeds and chia seeds. You may have seen them at the drugstore, marketed as supplements to support brain health and mood. Omega-3’s in particular have known anti-inflammatory effects and may slow the development of blood vessels and the growth of endometrial lesions. The studies that have looked at omega-3 supplementation in endometriosis have somewhat conflicting results. The best advice is to try to integrate omega-3-containing foods into your diet and see if they have an effect on your symptoms. Either way, PUFAs support heart and brain health, so adding them to your day can help your overall well-being.
TLDR; Inflammation contributes to painful endo symptoms. Nutrients like vitamin C, vitamin E, herbs and spices, and polyunsaturated fatty acids may help decrease inflammation and help with symptoms. Caffeine-containing beverages like tea or coffee may help with inflammation, but too much caffeine may also worsen symptoms for some.
In your scrolling through different social media platforms, you may have come across influencers or creators sharing their special ‘endometriosis diet’. They may share that it has drastically helped with their cramps, bloating, and pelvic pain. But is there any evidence to back up these claims? And are there even special diets aimed specifically at endo?
Firstly, a common diet shared online for endometriosis is an ‘elimination diet’. Its exact definition, and which foods are allowed or not, may depend on the person sharing this diet online. However, in general, they tend to exclude refined carbohydrates, simple sugars, and even things like caffeine and spices. They tend to focus on whole foods with minimal processing and very simple cooking techniques (steaming, baking). At the time of writing, there are no studies that look at a strict elimination diet for managing endometriosis symptoms. From what we could find, studies have found that a high consumption of red meat, saturated and trans fats may increase your risk of having endometriosis. A handful of studies show that a Mediterranean diet and a ‘high antioxidant diet’ may be helpful in endo. But this is not enough to be able to suggest this to all people with endo. Furthermore, restrictive diets are not sustainable long-term, and there is always a risk of developing nutrient deficiencies. Elimination diets are not meant to be followed long-term due to this fact. If you are set on trying this, we strongly encourage you to work with a Registered Dietitian.
Plant-based diets are increasingly popular for a variety of reasons. Vegetarian and vegan diets, by design, encourage a greater intake of fibre, antioxidants and polyphenols. Fibre is especially helpful in endo, as it can help decrease estrogen levels. As mentioned before, endo is an estrogen-dependent condition - endometrial lesions respond to estrogen, and can even secrete it in some cases. Given this and the fact that plant-based diets encourage more antioxidant intake, it would be reasonable to suggest this. However, it’s not all-or-nothing - simply increasing plant intake in general is likely to be helpful.
Gluten is another component in foods that has been villainized in recent years. Eliminating gluten is often a component of those endometriosis elimination diets previously mentioned. But in terms of actual research, there are very few studies exploring this idea. Those that do exist are of low quality. It’s important to note that people with endometriosis are at greater risk of having Irritable Bowel Syndrome (IBS). For those with IBS, a low FODMAP diet is often recommended. This diet can help with bloating, stomach pain, and bowel habit changes experienced in IBS. This diet is not necessarily gluten-free, although some gluten-containing products are high in FODMAPs. So if you have endo and IBS, avoiding high-FODMAP gluten-containing products could help with symptoms (particularly bloating). However, in general, there is very little evidence that a gluten-free diet is helpful in those with endo, so we simply can’t recommend this.
Dairy products, like gluten, are often eliminated on ‘endometriosis elimination diets’ seen online. Similarly to gluten, dairy products can trigger bloating, diarrhea, and stomach cramps in those with IBS, or if you happen to be lactose-intolerant. So while there is something to be said for evaluating whether dairy products contribute to your symptoms if you have both endo and IBS (or lactose intolerance), there are actually very few studies showing that eliminating it will help specifically with endo symptoms. In fact, some studies show that it can decrease your risk of developing endo, while others suggest that it can increase them. Our best advice would be to keep a food and symptom diary for a short period of time to see if dairy products affect your symptoms and adjust your intake accordingly. A Registered Dietitian would be able to help you with this.
TLDR; there isn’t strong evidence that restrictive elimination diets help with endo symptoms. Similarly, there is little evidence that eliminating gluten or dairy from your diet will help with endo symptoms. Increasing your intake of whole fruits and vegetables may help with symptoms and inflammation. It’s always best to work with a Registered Dietitian if you need help navigating which types of foods affect your endo symptoms.
As we have discussed, those with endo may also have gastrointestinal symptoms related to the location of their endometrial lesions. For example, those with lesions on their large intestine may experience diarrhea or constipation, among other symptoms. However, did you know that those with endo also have three times higher odds of suffering from Irritable Bowel Syndrome (IBS) when compared to a healthy population? The main symptoms of IBS include abdominal pain, cramping, bloating, fullness and increased urgency among others. The typical nutrition approach for managing these uncomfortable symptoms includes working with a Registered Dietitian to identify foods that trigger symptoms. This often entails following a low-FODMAP diet for a short period of time, before reintroducing foods and monitoring symptoms. If you happen to have both endometriosis and IBS, working with a Registered Dietitian can help you identify foods that worsen your symptoms. We want to highlight that a low-FODMAP diet is restrictive and not meant to be followed without the supervision of a healthcare professional. It is not meant to be followed long-term, it is simply a tool to help identify triggers and manage your symptoms. Those with endo may also experience symptom ‘flare-ups’ during certain times of their cycles - and this holds true with gastrointestinal symptoms as well. So, we suggest tracking your cycle and keeping note of when your gastrointestinal symptoms are worse. This will help you know when you might need to engage in some extra self-care to support your body during that time.
Is there something to be said about the role of your body’s microbiome in endometriosis? Your microbiome is the totality of microorganisms (like bacteria, fungi, parasites, and even viruses) found in your gut. A new concept being explored by researchers is that of the estrabolome, or the collection of microorganisms in your gut that are able to metabolize estrogen. Scientists hypothesize that changes in this estrabolome could affect the levels of estrogen in your blood - and we know that endometriosis is a condition dependent on estrogen. Otherwise, studies show that in general, the gut microbiome can affect endometriosis development, as an ‘unhealthy’ or dysregulated gut microbiome can promote inflammation, hormonal dysregulation, and other driving factors in disease progression. So what can we actually do if we are looking to improve this? Well, some studies suggest that Lactobacillus supplementation may help with endometriosis-related pain. There are also early studies looking into using antibiotics for treating endo-related gut microbiome issues. Overall, more studies are needed to explore the relationship between gut microbiome and endometriosis. However, there are some simple steps you can take to promote a diverse and rich gut microbiome, without needing to resort to supplements. Foods rich in Lactobacillus include milk, yogurt containing live cultures, miso paste, and tempeh. You can also support a healthy gut microbiome by increasing the amount of fibre you eat. Fibre acts as a prebiotic or a food source for good bacteria. Prebiotic-rich foods include whole grains, leafy greens, onions, garlic, and artichokes.
TLDR; people with endometriosis are at greater risk of having IBS as well. If you have IBS, a Registered Dietitian can help you with managing symptoms through nutrition. Tracking your cycle can help you keep track of when your gastrointestinal symptoms are worse. Emerging research suggests that supporting a healthy gut microbiome may help with endo symptoms and disease progression.
Now that we’ve explored the various ways nutrition may be able to help manage endometriosis symptoms, let’s explore some simple lifestyle strategies that may help as well.
Research on the impact of exercise on endometriosis is surprisingly limited and inconclusive. A review done in 2021 found only one study that showed improvements in pain intensity when people with endo followed a regular exercise program. The lack of consistent research on this topic means we still don’t fully understand how physical activity affects endo symptoms like pain, cramps and fatigue. Some research does indicate that those with endo tend to be less physically active than those without. This is likely due to their heavy symptom burden, such as chronic pain and fatigue. On the other hand, exercise is known to decrease oxidative stress and inflammation, which could theoretically improve endo symptoms (although, more well-designed studies are needed to confirm this). Research is ongoing in this area.
I should also be noted that some medications (specifically Gonadotrophin‐releasing hormone analogues) prescribed to those with endometriosis have been known to increase bone mineral density loss. This can lead to conditions like osteopenia and osteoporosis, which increase the risk of fractures. In order to preserve as much bone mass as possible, it is recommended that people taking these medications engage in strength training.
For those living with endo, it’s important to choose forms of movement that are manageable and adapted to the severity of your symptoms. Your ability to move might change from day to day, and that’s perfectly okay. While movement can offer significant benefits for both your mental and physical health, it’s essential to listen to your body. Remember to choose a form of movement you enjoy, and that is adapted to your needs.
TLDR; little is known about the effect of exercise on endo symptoms. Overall, movement is beneficial for both mental and physical health, but you should choose a form of movement that you enjoy and is adapted to your particular symptoms.
Apart from exercise, are there forms of physical therapy that can help with endo symptoms, particularly cramps and pelvic pain? Research into this is still in its early phases. You may have seen people online with endo share various devices, like TENs machines, red light therapy devices, etc that they report help with their symptoms. There is some research on these devices, although overall more evidence is needed. Some small studies showed that TENS machines (Transcutaneous Electrical Nerve Stimulation) may help reduce pain when used alongside hormonal treatments, and help decrease the amount of pain medications needed by participants. These devices have also been shown to help treat pain from primary dysmenorrhea, or painful periods not caused by any particular medical condition. Some studies looked at photobiomodulation (commonly referred to as red-light therapy). Red-light therapy has been shown to decrease inflammation in tissues with inflammation. However, overall there aren’t enough studies to say for sure whether it is helpful in endometriosis.
TLDR; there is some evidence that TENs machines can help reduce painful pelvic cramps. Red light therapy could theoretically help, but there simply isn’t enough evidence to confidently support its use. Ultimately, you can try these devices, and if they help with your symptoms, all the better. But they are certainly not a first step in pain management!
Endometriosis and stress seem to have a two-way relationship–stress can worsen endo symptoms, and the pain and challenges of living with endo can certainly increase stress levels. Research is still ongoing to determine whether endo itself causes chronic stress, or if stress contributes to symptom severity. What’s clear, however, is that managing your stress in healthy ways can improve overall well-being. Studies also show that people with endo may be more prone to certain mental health conditions like anxiety and depression, possibly due to chronic pain and stigma associated with the condition. There may even be a genetic link between these conditions. So what can be done to help? Research has looked into Psychological and Mind-Body (PMB) interventions like yoga, mindfulness, relaxation training, and cognitive behavioural therapy (CBT), which were found to be promising to help improve pain, anxiety and depression scores in those with endo.
Some emerging research suggests that women with endo may have decreased vagal tone; in other words, decreased parasympathetic nervous system tone and increased sympathetic tone. This essentially means your body is more often in ‘fight or flight’ mode than it is in ‘rest and digest’ mode. Vagal tone is most easily measured using heart rate variability, or HRV. This refers to the amount of time between heartbeats. Even though we typically express heart rate as a certain number of beats per minute, those beats are not necessarily evenly spaced. The time between beats varies slightly, and this is regulated by your vagus nerve. Higher heart rate variability indicates better cardiovascular health. A study showed that women with endo have lower HRV, and therefore lower vagal tone. Some studies also show that low HRV in women with endo is related to the severity of their pain. So can we increase vagal tone, or in other words stimulate the parasympathetic nervous system, that system in our body that causes us to ‘rest and digest’ as opposed to being in ‘fight or flight’? One study explored vagus nerve stimulation in mice, using a device that provides electrical impulses to the nerve. This is sometimes used in humans to treat epilepsy. To our knowledge, this hasn’t been tested in humans yet for endometriosis. If you want to try stimulating your vagus nerve to improve vagal tone, things like meditation, exercise, massages, listening to music (and specifically singing and humming), and cold-water immersion are all evidence-based ways to do so.
Another aspect often not considered is the invalidation of lived experiences that those with endometriosis often experience. One study noted that those with endometriosis report experiencing high levels of invalidation from healthcare providers. These high levels of invalidation were found to be related to higher scores of depression, anxiety, and decreased quality of life. Advocating for yourself while navigating the healthcare system as a person with endo is an essential tool to have. It is unfortunate that in today’s healthcare system, so much of the burden falls to the patient to advocate for themselves, but sometimes it’s the squeaky wheel that gets the grease. Some tips to help you navigate for yourself when dealing with endo or trying to obtain a diagnosis include taking notes when you are seeing your healthcare provider, bringing a friend or family member to appointments for moral support and to provide additional information and using patient portals to ask questions and follow-up. It can also be a good idea to increase self-care around appointments. Whether this means booking an appointment with a mental health professional or doing something kind for yourself is up to you.
TLDR; those with endo may be at greater risk for experiencing chronic stress, and some mental health conditions. Stress management techniques can be helpful - and if you are experiencing symptoms of a mental health condition, you should talk to a healthcare professional to get the support you need. Stimulating your vagus nerve may help with symptoms and progression of endo. Implement strategies to advocate for yourself when navigating the healthcare system.
Sleep disturbances are common among people with endometriosis, especially those experiencing severe pelvic pain. Research shows that those with painful endo symptoms report worse sleep quality, more daytime sleepiness, fatigue, and even insomnia compared to healthy individuals. Poor sleep quality in turn can worsen endo symptoms like fatigue, negatively affect mental health, and lower overall quality of life. Managing pain is a key factor in improving sleep, as some studies show that sleep quality improves in patients having undergone surgery to remove endometrial lesions. In terms of supplementation, melatonin has shown promising effects in improving sleep and even reducing endometriosis-related chronic pain. Melatonin also has anti-inflammatory and antioxidant effects, which could improve inflammation in endometrial lesions. While more research is needed, melatonin could be a helpful and low-risk addition to other endometriosis treatments. If you want to try a food source of melatonin, tart Montmorency cherry juice naturally contains some. Ultimately, improving sleep quality in those with endo may require a combination of good sleep hygiene habits and effective pain management.
TLDR; good sleep hygiene practices could help decrease overall fatigue, but with endometriosis, pain is likely a limiting factor. Getting on top of pain management will likely make the biggest difference in sleep duration and quality. Melatonin supplementation could help.
Lastly, we wanted to address some common myths or misconceptions about endometriosis you may have seen online, or heard from a well-meaning friend, family member or even healthcare provider. A common myth surrounding endo is that pregnancy will magically “fix” this condition. The research on this is clear–pregnancy does not reduce endometrial lesions or alleviate symptoms long-term. Some studies show that while pregnancy might temporarily improve psychological, physical and social well-being in those with endo, these improvements are short-lived and symptoms typically return after some time. This myth is harmful as it dismisses the real pain and struggles experienced by those living with endometriosis, by assuming that pregnancy is feasible, within someone’s goals and a long-term solution to endo symptoms, while this is simply not the case.
Another misconception is that endometriosis will improve after menopause, or the cessation of menstrual periods. While it is true that endo symptoms are very cycle-related, and typically peak right before or during menstruation, some women will experience symptoms throughout all phases of their cycles. Similarly, although after menopause women no longer experience periods, their ovaries continue to produce some estrogen, which can continue to trigger endo symptoms. So menopause may improve some, but not all symptoms in those with endo.
Finally, endometriosis does not just affect the pelvic area–it is a “full body” disease. As we mentioned, endo affects the level of inflammation not only in your pelvic area but in your whole body. And while endometrial growths are most commonly found in the pelvis, they can actually occur anywhere in the body.
Nutrition and lifestyle can play a role in managing certain endometriosis symptoms. The science shows that certain foods, nutrients and supplements can help with pelvic pain, inflammation and gastrointestinal symptoms like bloating. Lifestyle habits like engaging in movement, certain forms of physical therapy, getting enough sleep, managing stress levels and supporting your mental health can also improve your symptoms and overall quality of life. As always, lifestyle and nutrition changes that work for one person with endo may not work for another. Endo symptoms are highly individual and exist on a spectrum, and should be treated that way. If you suspect you have endometriosis or if your symptoms are interfering with your daily life, we encourage you to reach out to a healthcare professional. If you have endo or know someone who does, we hope the information shared in this post will help you on your endo journey.
Looking for a helpful cheat sheet to help you manage your endo symptoms through food and lifestyle hacks? Check out our handy summary of tips, with the top sources of nutrients to help manage symptoms, recipes and more!
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