Body aches, pain in the pelvis, spine, lower back and thighs, headaches, fatigue, mood swings and occasional nausea are just a few of the regular symptoms Fernwood Penrith member Maddie experiences due to endometriosis. She’s one of the more 730,000 women who suffer with the disease across Australia* (Source: Endometriosis Australia).
When asked how she manages her condition on a daily basis, Maddie admits:
“If I’m honest, most days I don’t manage my endometriosis, it manages me.”
“My endometriosis has impacted my relationships, my friendships and my family relationships. There are a lot of people who don’t understand what it means to love someone with such a difficult condition,” she says.
If the pain and constant impact on her life weren’t bad enough, Maddie also experiences prolonged heavy bleeding. The severity of her condition shifts with each flare up, but most symptoms last for one to two weeks, and that’s a good month. The worst she has experienced is 68 consecutive days of heavy bleeding and pain.
She was first diagnosed with endometriosis in April 2018, but Maddie says she has suffered since she was 10 years of age. When she hit high school, she was stuck at home for up to eight days a month due to pain. As the symptoms and frequency increased, she started to question whether something more sinister was happening.
For years, she shuffled though different GPs, before finally being diagnosed with endometriosis. She was relieved to have an answer after years of suffering, but then she had to come to terms with what her diagnosis meant.
“[It] felt bittersweet knowing that there was an answer to my problem – a lot of the time, pelvic and abdominal pain caused by menstruation is overlooked and women are told to “suck it up”…and for a long time I wasn’t sure if I was just overreacting or if this truly was an abnormal issue.
“Knowing that there was a way to identify my pain meant that I was hopeful that we could find some solutions.”
But managing her condition has been just as difficult as receiving the diagnosis. To manage the pain on a daily basis, she sticks on heat packs before work to find some comfort during the day, and when she’s at home, she’ll sit in a hot shower if the pain is more severe. So far, she hasn’t found any remedy that offers long-term support.
She has seen a naturopath, got acupuncture, been on several different hormone therapy medications, saw a women’s health physio, tried the contraceptive pill and was even prescribed a medication traditionally given to trauma patients to reduce heavy bleeding.
“All remedies I have approached have either failed me or have left me feeling worse off than before,” Maddie says.
“I recently got started at Fernwood Penrith in hopes to improve my experience with endometriosis. When I am moving, I am in less pain. When I lay in bed keeping still, I feel I seize up and I feel stiff all over which causes more pain.
“I go with my friend Izzy which means we catch up on our social life and I feel more comfortable going into classes with a friend. I have had to cancel on Izzy a few times and we’ve even had to go home early as I was in too much pain to continue, but it is good to know Izzy has my best interest at heart and is pretty flexible with my endometriosis.”
Despite the emotional turmoil she has endured as a result of her condition, Maddie has found comfort in those close to her heart, as well as from the wider female community.
“The endometriosis online community is such a beautiful and supportive group of people who provide such raw and real stories for everyone with a uterus to relate to,” Maddie says.
“All in all, the small group of people I do have around me have been nothing less than supportive, kind and generous. A lot of my friends still ask me questions with a lot of respect and are eager to learn more about endometriosis and how they can better support me. For that, I am so thankful.
“I hope that one day, endometriosis will be a simple, quick, non-intrusive diagnosis with easy and accessible treatments for young women to be able to live pain-free and healthy lifestyles. This can only be achieved with more funding for research and education. Young people need to know what goes on within a female reproductive system and to know how to identify symptoms.”
Read more about endometriosis here.
This story is a personal account. It does not take into consideration your personal or health conditions. Always consult your GP or medical specialist for health-related advice.