Debilitating period pain, persistent nausea, abdominal bloating, dizziness, vomiting, sudden onset of migraines and constant unexplained fatigue. These are just some of the physical manifestations of endometriosis.
What is Endo?
Endometriosis is a condition characterised by the growth of tissue, similar to the tissue that lines the uterus, occurring outside of the uterus. These growths are known as lesions or patches and are typically found on or around reproductive organs in the pelvis or abdomen such as on the ovaries and uterus.
Since it is not typical for this kind of tissue to be growing outside the uterus problems develop. These can include inflammation of surrounding areas, scarring, painful cysts and adhesions (connecting organs together which wouldn’t normally be) along with other symptoms mentioned earlier. These patches, like the tissue found within the uterus, are responsive to hormonal fluctuations. This means symptoms typically worsen during the menstrual period for those who experience them.
There are 4 stages of endometriosis, characterised by the number of lesions or patches and the extent to which these lesions are impacting other organs and tissues.
The 4 stages are:
- Minimal (Stage I)
- Mild (Stage II)
- Moderate (Stage III)
- Severe (Stage IV).
Honoring your Unique Lived Experience
Endometriosis affects 11% of females of childbearing age in Australia (1). There is no known cause of endometriosis, however recent studies have suggested a genetic link (2). Unfortunately, no known cause apart from a genetic link means there is currently no known cure either. This can be extremely frustrating for those experiencing symptoms as all treatments currently offered are focused on managing symptoms, rather than addressing a root cause or causes.
For many, endometriosis can go undiagnosed for years. While this is improving with greater efforts around awareness and screening, it can take up to 12 years in some cases for a diagnosis to be made. This can be attributed to the fact that endometriosis is a condition which presents differently from person to person.
It’s also important to note that not everyone with endometriosis will experience symptoms at all and that the severity of a persons symptoms does not necessarily indicate what stage of endometriosis they may have.
If something doesn’t feel right in your body, talk to your doctor. If you have felt dismissed when trying to share about your concerns or symptoms, seek a second opinion. It is not normal to experience painful bowel movements, pain with sex or pain around your period which disrupts your ability to engage in your life.
The same way there is so much variability in the way each person living with endometriosis presents there is also a considerable amount of variability in management tools for this condition and what works for each person. Many individuals have managed symptoms with birth control pills, pain medication, heat packs and anti-nausea medication. Whilst these are usually the first points of management for many individuals there are other kinds of support which could be helpful as well including that of a physio, psychologist and potentially a dietitian.
Regular movement/exercise can be a helpful way of managing symptoms for some people. Movement can look many different ways and it’s important to explore finding things that you enjoy and to remember that rest is just as important. If something doesn’t feel good, try something else. Different forms of movement may feel better during different points in your menstrual cycle.
A therapist can be a supportive part of managing endo. From what can be a long and confusing journey to a diagnosis to begin with, the thoughts and feelings about receiving a diagnosis to living with a condition experienced by many as painful and uncomfortable, having someone to talk to can help. This might include support for your mental health and potentially for navigating your lived experience of managing pain and other challenging sensations within your body if those are part of your experience.
Regular and adequate eating, joyful movement, stress management tools and sleep hygiene can all play a supportive role too. It’s important to make sure we’re listening to our bodies. Our bodies are incredibly smart and are constantly trying to communicate with us.
Nutrition and Endo
When it comes to any health condition (Endo included) virtual spaces like Google, insta and tik tok are ready to offer endless recommendations on food and eating. There is an enormous amount of information online and within a person’s own inner circle citing specific diets and food restriction as a means of managing endometriosis.
A very important caveat for such suggestions when it comes to endo care is that there is no evidence to support claims that any food is all good or all bad when it comes to managing endo.
What we do know is that food restriction or elimination has some real risks for mental and physical health and overall well being. It’s important to consider the very real potential cons alongside possible pros before embarking on experimenting with something you have seen, heard or been told. This is particularly important for those with a history of disordered eating or an eating disorder. Talk with your doctor or dietitian first if you are unsure.
In saying this, it’s important to note that lived experience matters and if someone has found something that they believe truly works for them in managing their symptoms and allows them a flexible and peaceful relationship with food and eating, then that is great.
Gentle Nutrition Experiments for Endo
Given the above (remember, we don’t truly know yet if diet changes can help manage endo symptoms) the below are some gentle offerings to explore where adding things might have a supportive impact. If you choose to try adding new things in check in with how you and your body are feeling about it as you go. “Does this feel helpful to me?” “Do I enjoy these foods?”
Key Starting Place:
A nourishing (read: is there peace and pleasure with food?), balanced diet (read: is there a variety of types of foods?) with enough food (read: enough to meet your body’s needs and activities) as best as you may be able to access these things is a key place to start in considering nutrition for endo.
Possibly Worth Experimenting With Next:
Since endometriosis is characterised by inflammation, it has been suggested that adding foods with anti-inflammatory properties to one’s diet could be supportive. These include foods such as fatty fish like salmon or sardines, nuts, seeds, nut butters, avocados and olive oil among others.
Research also suggests that increasing the number of fruits and vegetables could also have a positive impact on symptoms, due to the overall nourishment as well as the fiber and antioxidant content. Whilst these could be helpful additions to your current diet, it’s important to note that every individual is different and has different needs and preferences which are important to honour.
Not eating enough and/or pushing the body hard with an exercise routine or high activity demands are stressful for the body. If food and eating or movement feel difficult to navigate (or you have difficult thoughts and feelings about what you are or aren’t doing food/eating/exercise wise) consider reaching out for support by talking with your doctor, gyno, therapist or dietitian.
For some individuals, surgery is the route they choose. This is something that should be discussed extensively with your GP and gynaecologist, so that you are well-informed to make the best decision for yourself. It’s important to be aware that surgery does not guarantee that re-growth of endometriosis will not occur. As long as an individual still has menstrual periods, there is a risk of endometriosis regrowth. Whatever path you choose to take after your diagnosis will depend on your needs as an individual. What works for one person may not work for someone else.
If you suspect that you may have endometriosis or have a familial history of endometriosis you should have a conversation with your GP regarding your concerns. Similarly, if you have been recently diagnosed, find a GP and gynaecologist you trust and feel comfortable with to help guide the management process. They can monitor your needs alongside you and support you in making educated decisions for the best way to move forward. As mentioned previously, there is no known cure for endometriosis, but there are various ways to manage your symptoms.
By far the most important takeaway would be self-exploration alongside your GP and gynaecologist. Always remember you are the expert on you. You know your body better than anyone else, so if something feels off, trust your instincts and explore it further.
If you are concerned about food and eating then you might also like to explore with support from a Dietitian. Book in for your Initial Appointment today to get started feeling less confused and stressed and more peaceful and connected.
Written by Dietitian and Intern Husnaa, informed by lived experience of endometriosis.
Edited by Principle Dietitian and Director of Wander and Nourish Nutrition, Lisa Carrigg.