It takes a warrior to handle endometriosis

Bubbly, tenacious Jenna Schubach (20) was diagnosed with stage-three endometriosis when she was just 14 years old.

"Endometriosis is a condition where the endometrial tissue of the uterus begins to attach itself to other organs in the body. Common symptoms include severe and heavy menstruation, nausea, fatigue, back pain, headaches and ovarian cysts," Jenna explains.

According to the World Health Organization, endometriosis affects about 190 million women (10% of women of reproductive age) worldwide, and the condition has no cure.

Weeks of chaos

It all started when Jenna suddenly felt a severe pelvic pain after a Physical Education class at school. Her GP referred her to a gynaecologist who spotted growths in her uterus on a sonar scan. In November 2017, Jenna had her first laparoscopic surgery to remove the growths.

"To be officially diagnosed with endometriosis, you have to have an operation and the growths have to be removed surgically," she explains. "It takes an average of seven years for a woman to finally be diagnosed with endometriosis after the onset of symptoms."

Between 2018 and 2020, she had two more laparoscopies as well as a hysteroscopy. She has also had many visits to the ER and is on chronic medicine because of the condition. "Every time I had my period, it was absolute chaos. They would go on for six weeks at a time. I don't remember my grade 9 year of school as a result - I think I was suffering from depression."

In 2023, Jenna says things are going better. "Thankfully, my endometriosis seems to have improved. I recently had to change the hormone-related medicine I was on because it wasn't effective anymore. I only see my gynaecologist once a year, where before I was seeing her every three to six months."

The long road to acceptance

"For a very long time, I was angry, because my life wasn't the same as it was before. I couldn't do things I was able to do before and I blamed my endometriosis," Jenna reflects.

In time, Jenna's anger turned to acceptance: "I noticed that all my friends and family still looked at me like I was completely and utterly myself. I realised that I could do the same, and I could build myself in a way that I was happy with, so I could love myself as much as they love me."

Now, she sees her diagnosis as an opportunity to help others. "Ultimately, I would like to raise awareness of endometriosis," she says boldly. "I want people to understand what it is and who it affects and about the strength that it takes to cope with this condition."

Jenna is at university studying education and psychology. She says living in a university residence has provided a platform for her to easily be able to speak to other women. "I put up posters and talk about periods and endometriosis. I want to remove the stigma around menstrual cycles and endometriosis. I want to teach all women what a healthy monthly period should feel like and what to do if it theirs differs, as mine did."

Jenna surprised by another diagnosis

In 2022, Jenna was taken by surprise when she was diagnosed with another serious condition. "I had severe pain in my lower back. My gynaecologist did scans and ruled out gynaecological causes. It was during an MRI that arthritis was found in my sacroiliac joints - the joints that link the pelvis to the lower spine. The arthritis was probably caused by all the inflammation I've had in my pelvis from the endometriosis, since I was about 13 years old."

"I was happy to find out what was causing the pain but couldn't help feeling shocked to be diagnosed with arthritis at such a young age."

"I take an immune suppressant and other medicine to manage the arthritis. An unexpected benefit of this medicine has been that it reduces my period pain, which is usually very bad due to my endometriosis. I am on strong treatment to slow the progression of the arthritis in the hope that when I'm older, I will be able to have good quality of life."

"I've found that moving my body, even when it feels impossible, does help. I start my mornings with intentional movement like yoga or stretching. I also try to go for a 2 km walk every day. But I've realised that each day looks different. If I'm in a lot of pain, I try not to do anything that will worsen that discomfort."

I don't have to bear this burden alone

"I am supported by an amazing team of medical professionals who are so knowledgeable."

"I see a physiotherapist regularly for conditioning. More recently, I also started seeing a pelvic floor physiotherapist for pelvis rehabilitation. I was terrified at first, but it has made such a huge difference. My pelvis has been in crisis mode for so many years that it didn't know how to function properly. This had a knock-on effect on other bodily functions because the pelvis is linked to many important organs. My pelvic muscles were short and tight. It has been a revelation to feel how my body actually should feel after going for a few sessions of pelvic floor physiotherapy."

"I am very fortunate to be a Discovery Health Medical Scheme (DHMS) member. I receive chronic illness benefits which cover my arthritis treatment and management in full."

"In the past I used to feel like my illnesses were my burden alone to bear. But now I realise that I don't have to go it alone. I've got medical professionals, DHMS, family and friends who support me."

"It takes a warrior to handle this condition day in and day out"

"Endometriosis is a condition that affects so much more than your physical health. It affects a person's mental and emotional health too," she says.

"I have learnt how to deal with the emotional turmoil that comes with having chronic illnesses. I've learnt that as long as I'm happy, I don't need to try to keep up with everyone else. Self-love is the best love."

"It takes a warrior to handle this condition day in and day out, so those who have it should never forget their strength even in the moments when it wavers. I know that the diagnosis feels like the end of the world...but it's not. There is hope so don't give up."