March is Endometriosis Awareness Month and so we’re taking the opportunity to join the conversation and advocate for more information and more support for those suffering with this condition.

You want the truth? Endometriosis sucks. The World Health Organisation defines it as a chronic condition that affects roughly 10% of people of reproductive age worldwide. And according to the Australian Government Department of Health, in Australia it affects at least one in 9 girls and women and those assigned female at birth. That's millions of people desperately seeking some respite from its grip, including Really Nice Tea Founder, Laura Kelly. 

“I spent years dealing with heavy, painful periods, digestive issues, fatigue and a long list of other symptoms,” she explains, “which I now understand were part of my endometriosis diagnosis. It can be frustrating not knowing exactly what is wrong or what you can do to help but I think the more we talk about this painful condition, the better.”

 When it comes to getting the diagnosis, Laura is adamant, “If you think something is wrong, I think it’s so important for people to advocate for themselves and push until they’ve found the answers.”

What is endometriosis?

As defined by Office on Women’s Health, endometriosis, often referred to as 'endo,' is a condition where tissue similar to the lining of the uterus (endometrium) is found outside the uterus. This tissue can appear in various areas within the pelvic region, including the ovaries, fallopian tubes, bladder, bowel, and pelvic ligaments. Contrary to popular belief, this tissue doesn't necessarily follow the menstrual cycle in the same way the uterine lining does.

According to Professor Jason Abbott, a leading expert in the field, "Endometriosis is a commonly held myth that this tissue ‘menstruates’ every time the woman does, but that is not correct – the tissue is only similar to the usual lining of the uterus, but it does not act in the same way."

What are the symptoms of endometriosis?

"Symptoms vary between people and where the endometriosis deposits are located,” explains Professor Abbott. “While some experience cyclic pain aligned with their menstrual cycles, others endure chronic pelvic discomfort throughout the month. Additionally, approximately one in three women with endometriosis may also experience fertility challenges.”

While it’s important to understand that everyone may experience endo differently some of the symptoms may include:

• Painful periods
• Painful urination
• Painful bowel movements
• Pain during or after sex
• Fatigue
• Bloating and nausea
• Fertility issues

For many women, the pain associated with endometriosis can be debilitating, affecting their daily lives and emotional wellbeing. An interview study conducted by the International Journal of Women's Health found 18 different symptoms of endometriosis. In the group of 40 women, the most common symptoms reported were:

• Pelvic pain (92.5%)
• Painful intercourse (dyspareunia) (80.0%), and 
• Heavy bleeding (75.0%). 

They also identified 33 different ways that endometriosis symptoms affect people's lives, falling into 11 categories: physical effects, impacts on daily activities, social effects, sleep disturbances, emotional effects, changes in appearance, financial strain, effects on sexual activity, impacts on work or school, fertility issues, and changes in cognitive function. 

What causes endometriosis?

While the exact cause of endometriosis remains elusive, researchers have identified several factors that may contribute to its development. Genetic predisposition plays a significant role, with daughters of mothers with endometriosis being seven times more likely to develop the condition themselves.

In addition to genetic factors, environmental triggers such as retrograde menstruation (blood flowing backwards through the fallopian tubes into the abdomen), immune system dysfunction, and exposure to certain chemicals or bacteria may also play a role in the onset of endometriosis. It’s important to note, as Professor Abbott shares in an interview with O&G Magazine, “Endometriosis is not a single disease process, but a group of related problems that appear in many forms,” therefore making diagnosis somewhat tricky. 

Diagnosing endometriosis

Diagnosing endometriosis is a notoriously slow and challenging process, one that, according to Endometriosis Australia can take on average 6.5 years. Other sources would say it can be even longer than that. With such varying symptoms and limited research, it can be a frustrating process for those experiencing symptoms of this painful condition. The diagnosis itself typically involves a combination of clinical evaluation, symptom assessment, and imaging studies such as pelvic ultrasound or MRI. However, a definitive diagnosis often requires laparoscopy, a minimally invasive surgical procedure that allows for direct visualisation and biopsy of endometrial deposits.

Treatment for endometriosis

Treatment for endo, again can be a complex process and can require a different approach on a case by case basis. And while there is currently no complete ‘cure’ considered for the condition, treatment is mostly focused on the management of the symptoms and involves doing what you can to minimise the pain and discomfort. 

It’s really all about finding what works for you. As Lena Dunham writes in her 2018 Vogue article, “I go to pelvic-floor therapy, massage therapy, pain therapy, colour therapy, acupuncture, yoga, and (had) a brief yet horrifying foray into vaginal massage from a stranger.”  

In some cases, pain relief options, such as non-steroidal anti-inflammatory drugs and hormonal therapies like oral contraceptives or intrauterine devices, may help manage symptoms and slow the progression of the disease. 

Surgical intervention is one line of treatment, often performed laparoscopically, and involves the removal of endometrial implants and adhesions. More research is needed into the success rate of such surgeries.

When to seek help

If you're experiencing any of the symptoms suggestive of endometriosis, it's important to seek support and speak to a trusted healthcare professional. The symptoms mentioned above including heavy periods, persistent pelvic pain, menstrual irregularities, or difficulty conceiving should not be ignored, as early diagnosis and intervention may lead to better outcomes and improved quality of life.

Endometriosis is a complex and often challenging condition that affects millions of women worldwide. By raising awareness, fostering research, and advocating for improved care and support, we can empower individuals affected by endometriosis and work towards better understanding and management of this chronic condition.