• Lea

Kaleela’s Endometriosis Journey

With the start of the new year, we begin a new collection of articles. This month, we are focusing on endometriosis. Endometriosis is an enigmatic disease that affects up to 15% of women of reproductive age, yet there is no cure for it currently, only treatments to attempt to alleviate the existing symptoms. Endometriosis has significant effects on the social, occupational, psychological, and physiological lives of women.

In the previous weeks, we looked into what exactly endometriosis is, what the symptoms are, how it can be diagnosed and treated, and what its impacts on quality of life are.

This week we had the pleasure to chat with Kaleela, an absolute fighter and advocate, who shared her journey and life with endometriosis with us.

Kaleela’s journey

At 30 years young, Kaleela just had her first excision of endometriosis 7 months ago and wants nothing more than to fulfill her dream of having children. But let’s take a step back and look into how it all began.

Like so many other girls, Kaleela started using the pill at 15. Her mum, concerned that her teenage daughter would have to endure the same painful periods she had experienced, felt that the pill would be a good solution. 2016 was the year when Kaleela and her husband decided to get off the pill and start to pursue their dream of a family. With the related hormonal changes, not only did she have to say goodbye to her peachy and glowy skin, but some abdominal pain and diarrhea during her period started to become the norm. In seeking some answers about her periodic abdominal pain, her family doctor diagnosed her with irritable bowel syndrome (IBS). Three years later, severe cramps and pain that were no longer treatable with pain medication started to become regular during her period. On top of that, non-period related pain was gradually added to the menu of discomfort.

2019 was the start of big changes, losses and uncertainty for Kaleela. She and her husband moved to the USA from their home country in South Africa, and after three years of trying for a baby, Kaleela finally became pregnant in July 2019. But it was not meant to be; the baby (Aspen Lee) died around 6 weeks of gestational development, but Kaleela only found out some weeks later during her first routine ultrasound. She had experienced a missed miscarriage and had to make the heartwrenching decision to force her body to let go of the unviable pregnancy by taking medication to induce the completion of the miscarriage.

A few days after the miscarriage, the horror story of excruciating pain began: she found herself unable to stand up on her own, excessively bloated and with the feeling of her abdomen exploding and serrated knives twisting in her pelvis and abdomen that pain killers could not relieve.

Days five and six of each menstrual cycle after the miscarriage quickly became her worst days. Her whole digestive system would shut down and the pain would crescendo to a 10 out of 10 and would last longer with every cycle, up to the point of her experiencing 10 out of 10 pain in her pelvic region, bladder and bowels for 40 hours straight during her period. This was followed by days of painful bloating and constipation that made it almost impossible to move alone, eat or sleep.

Baby Aspen Lee

Diagnosis: endometriosis!

In the hopes of finding an answer and an end to her pain, Kaleela eventually contacted her gynecologist. Based on the information that her digestive system would shut down during her period, the gynecologist sent her to a gastroenterologist. This is where Kaleela was introduced to the possibility of an endometriosis diagnosis for the first time!

The gastroenterologist was confident that nothing was wrong with Kaleela’s digestive system, because the pain Kaleela described was only during her period; he was thus sure that endometriosis was the culprit and sent Kaleela back to her gynecologist. Back at the gynecologist, a pelvic ultrasound did not provide a sufficient image to visualise an abnormality in her uterus, and an MRI was thus ordered to get a clearer picture of things.

We all know these fascinating images that show us the insides of our bodies. If someone doesn't know what to look for on these images, it just looks like a map in different shades of black, grey and white. It is important to note that endometriosis does not always show up on imaging studies, but Kaleela’s endometriosis was so bad that her gynecologist saw it right away and was humble enough to admit that her case was beyond his own capabilities to treat. He thus referred her to an endometriosis excision specialist. The MRI also revealed adenomyosis in her uterus (a co