Spotlight on: Endometriosis

Mic’s story

For much of my life, I experienced constant abdominal pain including bloating, constipation, nausea, fatigue, painful intercourse, and heavy periods. The pain began when I got my first period at age 13 which came with side effects such as mood swings, heavy bleeding, cramps, and acne. At the time, people told me these symptoms were normal so I didn’t think anything more of it.

When I began high school, the stomach pains became more frequent and severe, so I headed to the doctors. Over the next 10 years, I saw many doctors, nutritionists, naturopaths, therapists, and specialists. I had x-rays, ultrasounds, and blood tests, with nothing ever coming back as too alarming. This was because they were all focusing on the wrong thing – my digestive system instead of my reproductive system.

Numerous doctors tried to tell me I had Irritable Bowel Syndrome (IBS) and prescribed medication and diet changes. Some of these helped in the short term, but my pain never really subsided. I couldn’t settle for the IBS diagnosis – I had a “gut” feeling they were missing the real problem. I had to keep pushing for an answer.

In 2019, I was 22 when I finally saw a gynecologist. She immediately said I needed to get checked for endometriosis. Unfortunately, the only way to do this is via keyhole surgery, which meant more waiting. With no option but the public health system, I went on the waitlist to get diagnostic laparoscopy surgery. COVID restrictions postponed the surgery four times.

Almost a whole year later in June 2020, I was in the pre-op room waiting to get surgery. When I woke up, I was shocked but also so relieved to hear they’d found endometriosis. This finally proved that I was right! There was something more serious going on for all those years. 

What is endometriosis?

Endometriosis occurs when cells similar to those which line the uterus are found outside the uterus. The cells can grow in the abdomen space, on other pelvic organs, or on the outside of the uterus itself. This causes chronic inflammation in the affected areas, which may result in a build-up of scar tissue. No one is sure exactly what causes the condition.

Endometriosis can cause severe pain. While the pain differs for each person, symptoms include painful and heavy periods, pain during sex, and painful bowel movements. The condition is degenerative – meaning it gets worse over time. The continued presence of scar tissue on the reproductive organs can also impact fertility. Currently, there’s no cure. Surgery to remove the scar tissue can help, but there’s no guarantee it won’t return over time.

But the problem isn’t just the physical symptoms alone. The ongoing pain impacts peoples’ daily lives, including their ability to work, study, socialize, maintain relationships, have sex, and sleep. And these impacts – coupled with the often stressful and drawn-out experience of accessing care – can understandably cause mental distress. There are economic impacts too – both in terms of missed work opportunities and the cost of consulting specialists.

Diagnosing endometriosis

From the onset of symptoms, it takes an average of 8-12 years for someone to get an endometriosis diagnosis. That seems a shockingly long time, considering the impacts of pain on quality of life and that the condition worsens over time. But as you may have already guessed, endometriosis is tricky. There’s a number of cultural, societal, and medical factors that contribute to delayed diagnosis. You’ll recognize some of them from Mic’s story.

Cultural & societal factors

• Endometriosis is an internal condition. You can’t see it, or the pain it causes. This means it’s difficult for people – friends, family, and health professionals alike – who don’t experience it to understand.
• Shame around menstruation – and the bodies of people with uteruses – is pervasive in society. As the main symptoms of endometriosis are problematic periods and pelvic pain, shame might stop some people from seeking medical help.
• Society has normalized pain during menstruation. People experiencing menstrual pain might try to ignore or underplay it. If you menstruate, think about it – do you think pain during your period is normal? Why? How much menstrual pain would cause you to see a doctor?
• Menstrual health education is lacking – both at schools and in the wider community. The resulting low knowledge of endometriosis and its symptoms is another barrier that may delay people seeking medical treatment.
• Many people with endometriosis experience dismissal of their pain by health professionals. There’s a long history of women’s pain being dismissed, due to social beliefs about “overemotional” or “hysterical” women.
• Racial bias can also play a role in treatment delays, with studies showing the presence of racial bias in pain assessment and management. This means a black person seeking healthcare for pelvic pain is more likely to be dismissed or inadequately treated than a white person.

Medical factors

• Across the world today, endometriosis research is poorly funded and under-prioritized. This is in part due to the complex nature of the condition, but also because it’s hard to get funding to research something which only affects people with a uterus. Yay, the patriarchy!
• Health professionals also have an inadequate understanding of the condition, meaning symptoms often stay unrecognized and people aren’t referred to the appropriate specialist for a long time.
• Currently, the most common way to reach an endometriosis diagnosis is via the laparoscopic surgery Mic mentioned. During this procedure – which takes place under general anesthetic – a surgeon inserts a viewing instrument called a laparoscope through an incision in the abdomen. The surgeon can see the endometriosis cells during this surgery and can remove them at the same time. However, surgery is a big undertaking and can be costly with large waitlists – which may contribute to increased delay, or even put some people off.

An endometriosis diagnosis isn’t everything

There are a number of dualistic ideas in Western society, ideas that something is either one thing or another. One such idea in medicine is that people are “ill” or “cured”. That’s in part why it’s hard to deal with conditions like endometriosis, with its mental impacts and no known cure. Rather than quick fixes to “cure” pain, people need help to manage and live with both the physical and mental aspects, which may be with them for a long time. In addition, everyone’s pain should be taken seriously – we all know our own bodies best of all, after all.

More on this from Mic

To suffer from pain for 10 years is unbearable but for it to feel like you have no support from the health system makes everything so much harder mentally. I’ve struggled with my mental wellbeing for a long time, and last year was the lowest I’ve ever felt. I’m grateful for my loving family and friends, but to constantly be in pain is torture. And for professionals to not believe you or make it seem like no big deal really plays on your mind. In your early twenties, life should be filled with fun but my pain got in the way to the point where I couldn’t socialize and sometimes couldn’t go to work. It put tension on my relationships as everyone around me wanted to help but didn’t know-how.

When I first found out I had endo (which was removed during the surgery but can grow back over time), I was over the moon. I thought that once I healed, all of my pain and symptoms would disappear or reduce. But now, seven months later, a lot of my symptoms are still there. It’s really hard to accept as it means that maybe endometriosis isn’t the reason for the pain after all. 

I thought reaching a legitimate diagnosis would mean more support from the doctors. But since the surgery to diagnose and remove the endo, the gynecologist thinks there’s nothing more they can do. They’ve even referred me back to the gastroenterologists (keeping in mind this is who I saw at the beginning). The problem is that I’m no longer looking for another diagnosis. Instead, I want them all to recognize that I’m living with chronic pain. And most importantly, I want to get help on how to manage it rather than to cure it. 

Final words

Mic: The key challenge once I was in the public health system was the lack of communication. If I hadn’t been constantly pushing and pushing, I would probably still be overlooked and remained on the waitlist. This needs to change! If this is how it was for me I can guarantee the same thing is happening to many others and it’s not okay.

The availability of specialists and surgeons for this condition and gynecological health, in general, is hugely lacking in New Zealand and I imagine worldwide too. There needs to be more knowledge and awareness on endometriosis within medical professionals and in the general public, so that suffering people don’t wait years to be helped. I want people to understand the pain it causes and the effect that this has on every aspect of your life, every day.

Katy: From this short story, we can see Mic’s experience with endometriosis fits with the issues discussed above. Normalization of menstrual pain. The delay in endometriosis recognition and diagnosis. Health professionals who don’t necessarily appreciate the impacts of endometriosis as more than just the pain itself. And needing to constantly advocate for treatment, which also takes a mental toll.

The key message we really want readers to take away from this post is that there isn’t a quick fix for endometriosis or chronic pain. For individuals experiencing such conditions, the quest to have a definitive answer and find out “what’s wrong” can be mentally draining and damaging. In addition to more understanding around endometriosis, perhaps we also need a shift in perspective – from seeking cures to understanding that some conditions might never leave you, but with the right management, you can still live the life you want.