Exploring Endometriosis

Exploring Endometriosis: Understanding Symptoms, Diagnosis, and Treatment Options

Written by Dr. Fiona Callender, ND

Endometriosis is a chronic, inflammatory gynecological condition, impacting upwards of 1 in 10 people assigned female at birth - that’s about 190 million people worldwide! This is a condition that is marked by the presence of endometrial-like tissue outside of the uterus. The endometrium is essentially the lining of the uterus. It changes throughout your cycle to prepare for implantation of an embryo and then sheds and shows up in the form of a period when this doesn’t occur. Though the changes in the endometrium are hormonally controlled, your hormones didn’t “cause” endometriosis - the cause is still not fully understood and likely involves a complex overlap of factors.

This condition is often associated with debilitating pain during menstrual periods, but may also show up with non-cyclical chronic pelvic pain. Endometriosis can be associated with painful periods, painful sex, painful bowel movements, and even painful urination. Like many other chronic pain conditions, many people also experience significant fatigue and their mood is often impacted. Concerns around fertility or having trouble getting pregnant are often primary reasons that patients seek care and finally reach a diagnosis, even though they have been suffering through symptoms for many years. Infertility is common symptom and endometriosis is discovered in as many as 30-50% of those accessing fertility care for unexplained infertility.

Though pelvic pain is the most common symptom - and it’s unlikely that you have endometriosis if you aren’t experiencing pain - those with endometriosis also have a higher risk of other chronic pain conditions such as migraine, fibromyalgia, rheumatoid arthritis, osteoarthritis and temporomandibular joint syndrome (TMJ). Nearly 50% of those with bladder pain syndrome or interstitial cystitis also have endometriosis. Irritable bowel syndrome (IBS) is also very commonly experienced by those with endometriosis. Why all the overlapping conditions? It’s possible that the overlap may be related to shifts in our pain perception through central nervous system sensitization.  

What is Central sensitization?

Central sensitization refers to a shift in our nervous system that changes and adapts in response to repeated exposure to inflammation and pain. Our system essentially responds to a stimulus with increasing intensity, regardless of the actual damage/lesion size. This is a major reason why surgery doesn’t necessarily help - and can be very disappointing to patients. We remove the lesion, but the environment and nervous system changes that have adapted to chronic pain remain. This can occur in about 30% of endometriosis patients, leading them to become less responsive to many forms of conventional care. This nervous system sensitization is often a factor in conditions like IBS as well - our nervous system has a lower threshold for sending signals to the brain. As an example, we all have gas in our intestines - most of the time we don’t feel it! - but in those with IBS, that sensation is heightened due to a lower threshold for stimulation. Harmless changes are experienced as pain. This is part of what can happen in endometriosis - even with surgery. 

With the impact of chronic pain on our nervous system, you can imagine how prompt diagnosis and management would be important. The longer we allow chronic pain to persist, the stronger this sensitization becomes. Neural connections grow stronger and amplify signals with more stimulation. Unfortunately, it often takes many years and multiple practitioner visits to land on a diagnosis. This is partially due to the inconsistent and overlapping symptoms, but also biases in medicine and how women’s pain is perceived and approached. The amount of patients who report “normal” period pain levels in the same sentence as “but I have to miss work” is a testament to that. 

So how do we diagnose?

There are a few questions we can ask you to get a good idea! Pain during menstruation, alongside fertility challenges, gives us some really good clues. Pain with sex and bowel movements also raise some suspicion. Though we used to only be able to definitively diagnose with a laparoscopic surgery, there is now increasing access to diagnosis with ultrasound. Though it’s not currently the standard of care for diagnosis and not every centre will have an appropriate machine and sonographer… we are likely moving in this direction! 

Treatment: what can we do?

Though there’s no way to prevent endometriosis, enhanced awareness and early diagnosis and management can help slow the progression and reduce pain. This includes reducing the potential for central sensitization.  We can’t “cure” it but we can manage symptoms. Though diagnosis can take some time, assuming a diagnosis and supporting symptoms is often the appropriate move in order to start management early.

There are a number of treatments that can support symptoms. Though we mentioned that endometriosis is not caused by estrogen, blocking it is often part of the solution. Hormonal options - including progestins, combined oral contraceptives, IUD and others - and non-hormonal options, including pain medications and anti-depressant medication options also exist. 

Surgery may be indicated depending on the person and the degree of pain. This is something to discuss with a gynaecologist. Because we know that surgery doesn’t always improve pain in the long-term, managing with other methods is often combined with surgical management. From our perspective, diet, lifestyle, and pelvic floor therapy are often part of the plan to improve how you feel. If fertility is a goal, discussions around assisted reproductive technology and whether surgery make sense are also had. We can provide a space for asking questions and helping you advocate for yourself in a system that isn’t always easy!