A Student’s Life With Endo

Original Article – Etcetera

On getting through university while overcoming an invisible yet common condition.

This article was written in promotion of the new student podcast ‘Floodlight’ and their latest episode focusing on endometriosis. The Floodlight Podcast is the passion project of two students and one graduate, that deals with issues surrounding the ‘unspoken and ignored’. 

When Georgia, a first-year university student, was diagnosed with endometriosis at the age of 16, listening to friends complain about their periods became an increasing irritation. She believes that the worst part of the diagnosis was realising the full extent to which it was going to affect her life.

The disease is incredibly common but frequently misdiagnosed. It is where lining similar to that of the uterus begins to grow in the fallopian tubes, ovaries, and pelvis. When it breaks down it remains within the body, causing severe pelvic pain, heavier and bloodier periods, bloating and painful bowel movements. 

It’s harder to diagnose adolescents, as the lesions on younger women are white or red whereas, for older women, they are dark or brown. Hence laparoscopy undertaken by surgeons often overlook the lesions in younger women.

The normalisation of the symptoms and lack of public awareness inhibits women from seeking medical advice. According to Endometriosis Australia, this causes a seven to ten-year delay in diagnosis. This delay can result in infertility and chronic daily pain, burdening women in their work, social and family life.  

The disease affects more than 1 in 10 women, which is around 176 million women worldwide. There is no known cure.

When Georgia bled for forty days she consulted a doctor. The doctor gave her an information booklet, under the unspoken proviso that she would have to research the disease herself, and also prescribed her the pill Levlen, although it was tentative as to whether it was going to help at all. Fortunately, Levlen, as well as the contraceptive pill, enabled her to keep her period under control. Now her period lasts about eleven days.

The disease affects more than 1 in 10 women, which is around 176 million women worldwide. There is no known cure. 

The 2016 documentary Endo What? attempts to break taboos and educate about the misconceptions and realities of the disease. According to the film, doctors often misdiagnose women and suggest pregnancy, intensive surgeries or drugs as remedies to the pain. 

During years 10 and 11, Georgia missed a lot of school due to the pain. She reflects, “That part of my life was everything at once, I cried all the time”. 

Some of her high school teachers were very supportive and would suggest breaks and offer hot water bottles for the pain. Others didn’t understand what she was experiencing or how to help. 

Although she was able to maintain her relationships with friends and family, she found they often couldn’t relate to her experiences. 

“I can’t always go out because I can’t move. It makes it hard to do anything … it affects everything.”

Endometriosis can also be a cause of infertility. “It’s pretty scary knowing I don’t work properly… I’ve always wanted kids. Now every time I think about them, that in the rare chance I do fall pregnant, I’ll miscarriage or they’ll be disabled.” 

There is little public awareness of the disease, even though it is as common as asthma and diabetes. According to ABC News, in 2016 endometriosis was allocated only $847 433 in comparison to the millions spent on asthma and diabetes research. 

“I can’t always go out because I can’t move. It makes it hard to do anything … it affects everything.” 

In 2017, the Pelvic Foundation of Australia conducted free one-hour presentations on menstrual health education for Adelaide students in years 9 and 10. This program continued in 2018, extending to 80 public and private schools within the state. Unfortunately, this has not occurred on a similar scale in other states.

Girls can begin developing endometriosis from the beginning of their period and are at a higher risk if they started having periods at an earlier age or have a lower BMI. The risk is also greater in women who have relatives who have suffered from the disease, as is true in Georgia’s case. Georgia’s mum had endometriosis and her sister has polycystic ovaries. 

At the age of eighteen, Georgia’s peers are focusing on university, relationships, and their futures. Georgia’s everyday life mirrors this, except with the added burden of endometriosis, including having to endure its painful effects, the potential of future infertility, and medical treatments. 

Despite there being no cure, the effects of the disease can be eased simply through lifestyle changes, creating a dialogue with friends and family and the appropriate determination of treatments by medical professionals. 

We need to vocalise and redirect conversations about endometriosis. It needs to be implemented within education systems for both girls and boys and funded appropriately, so in the future, we all understand the realities of the disease, not just the women suffering it. 

Check out the Floodlight Podcast and their episode on endometriosis here, on SpotifyiTunes or SoundCloud.

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