Living with endometriosis: The hidden battle

Endometriosis affects approximately 1 million Canadians and there is no known cure. Being variable in nature, this disease poses a challenge to clinicians and carries an annual cost of $1.8 billion. As per the Endometriosis Network Canada, the diagnostic delays may exceed 20 years and may lead to gradual physical decline. But what exactly is endometriosis and what are the risks that lead to this progressive physical decline?

What is endometriosis?

Endometriosis (en-doe-me-tree-O-sis) refers to the condition whereby a tissue resembling the uterine lining is found outside the uterus. This growth of uterus lining that may be found at other places in the body is representative of a gynecological disorder and could result in infertility. Some of the symptoms that a person with endometriosis may experience are problems getting pregnant, pain during or after sex, painful menstrual cramps that worsen over time, painful bowel movements, and pain in the lower abdomen, to name a few.

Credit: International Women's Day

Stages of endometriosis

Endometriosis may be found in a variety of different capacities within the body depending on the extent of disease, the stage of affect, and individual circumstances. Therefore, it is necessary to classify the disease to develop diagnostic modalities and standardize the research. The American Society of Reproductive Medicine (ASRM) has a classification system that aims at quantifying the endometriotic lesions using a point system.

Stage 1: Peritoneal Endometriosis

The condition is at its minimal with fewer superficial implants and the classification is between 1 to 5 points. At this stage the peritoneum is mildly infiltrated with the endometriosis tissue. 

Stage 2: Ovarian Endometriomas

Compared to stage 1, the implants are deeper than and the classification is between 6-15 points. This stage is particularly concerning because the ovarian cysts formed may break down and spread endometriosis into the pelvic cavity. 

Stage 3: Deep Infiltrating Endometriosis I

At stage 3, the deep infiltrating endometriosis is critical, classified at 16-40 points. This can be determined through presence of filmy adhesions and/or small cysts on one or both the ovaries. This means that the endometriosis is capable of distorting the state of pelvic organs such as ovaries, uterus, and rectum. 

Stage 4: Deep Infiltrating Endometriosis II

Stage 4 is the most severe form of Endometriosis as it includes long term negative effects on the organs inside and outside the pelvic cavity such as diaphragm, lungs, bowels, and heart. The range for this type of endometriosis is more than 40 points and may be determined through presence of large cysts on one or both ovaries and dense adhesions.

How does endometriosis impact the affected?

The dynamics of this disease is up for debate as researchers try to find the answers from the cellular to societal level. Even if you’ve been diagnosed, the accessibility to possibly effective treatment isn’t guaranteed. Canada does not have the needed medical support and trained clinicians to detect and/or treat endometriosis. Among the underserviced areas, not everyone can afford to travel and get the needed surgeries, such as hysterectomy. The geographical inequalities added to societal inequalities of the marginalized groups pose as great barriers that may lead to loss of jobs, relationships, and social ties.

Credit: EndoAct Canada

Gold standard test

To detect the presence of endometriosis, the gold standard set is a laparoscopic surgery as no non-invasive test for endometriosis exists. In practice, no abnormalities are known to be present on physical examination and speculum exam. Also, no serum marker has been proven both sensitive and specific to detect endometriosis. Laparoscopy is the most helpful procedure as it lets the clinician visualize peritoneal implants, windows, endometriomas, and adhesions.

Is it classified as a disability in Canada?

Yes, as per the Canadian Human Rights Act and the 1982 Charter of Rights and Freedoms, endometriosis is classified as a disability entitled to a inclusive and fair treatment with reasonable accommodations at work. As the condition may lead to long durations of pain and discomfort, it may affect a person’s productivity at work. Some of the reasonable accommodations at work may be flexible work hours, alterations to physical workspace, and modification of work duties. It is important for the employers and employees to have an open dialogue and devise a practical approach to finding a mutually beneficial solution.

What is EndoAct Canada?

EndoAct Canada fosters the values of inclusivity, equity, excellence, and partnership and aims to improve the lives of those affected by endometriosis in Canada. This is done by driving policy action so the affected people receive the right care, at the right place and time so they can enjoy their life, both for work and play. Access the #ActOnEndo Advocacy Toolkit to make your voice heard.

Ways to participate in Endometriosis Awareness Month

• Wear yellow in March: Yellow is the awareness color for endometriosis.
• Share stories: Many people use social media to share personal experiences and spread awareness.
• Participate in events: Many organizations, like the Endometriosis Network Canada, host webinars, walks, and awareness campaigns.

Let’s advocate!

Raising awareness about endometriosis is crucial to improving early diagnosis, treatment access, and support for those affected. While the condition remains incurable, advocacy efforts like those led by EndoAct Canada provide hope for systemic change. By pushing for better healthcare policies, increasing public understanding, and fostering workplace inclusivity, we can help ensure that individuals with endometriosis receive the care and accommodations they need. With continued research and awareness, we move closer to a future where no one has to suffer in silence.

Notes

1. https://www.jogc.com/article/S1701-2163(20)30472-2/fulltext
2. https://www.fda.gov/consumers/knowledge-and-news-women-owh-blog/understanding-endometriosis-symptoms-treatment
3. https://www.advancedgynaecologymelbourne.com.au/endometriosis/stages
4. https://endoact.ca/wp-content/uploads/2020/12/EndoAct_InformationNote_2020-1.pdf
5. https://pmc.ncbi.nlm.nih.gov/articles/PMC2880548/#:~:text=The%20gold%20standard%20for%20the,in%20diagnosis%20of%20this%20disease
6. https://www.resolutelegal.ca/is-endometriosis-a-disability-in-canada/
7. https://endoact.ca/about/