26 Mar Living with endometriosis

Endometriosis is a common inflammatory condition in which cells similar to the endometrium (lining of the uterus) grow in other locations in the body. Endometriosis is commonly found in and around the pelvis and reproductive organs. Still, it can also be seen in other parts of the body, including the bowel, bladder, and as far away as the lungs and the brain.

Nearly 1 million Australian girls, women, and those assigned female at birth live with endometriosis at some point in their life, with the disease often starting in teenagers. Around half of those living with endometriosis are challenged by fertility, but 70% will go on to have children.

The delay in diagnosis has reduced in recent years, but it still takes an average of 6.5 years to be diagnosed with endometriosis. Symptoms can occur as early as eight years of age. Common symptoms include pelvic pain that puts life on hold around or during a person’s period. It can impact fertility for some but not for all.

Recent statistics (AIHW 2023) found that 1 in 7 (14%) of women, girls and those assigned female at birth (AFAB) will be diagnosed with endometriosis by the age of 44 to 49.

TDHS Director of Clinical Services, Larissa Barclay, has lived with endometriosis from her early 20s, which was undiagnosed for a long time.

“Back then, the pain could be excruciating, but the topic was not widely discussed or publicised,” Larissa said. “Seeking medical help didn’t cross my mind, even as a healthcare professional.”

Even during the fertility struggles while trying to conceive her eldest, Luca, with the assistance of a fertility specialist, endometriosis wasn’t considered. Like many with endometriosis, she persevered through the pain, oblivious to its abnormality.

“After the birth of our twins, the pain and symptoms worsened,” Larissa said. “Despite consulting various GPs, I received only temporary solutions without any specialist referrals or definitive answers.”

Two years ago, after enduring pain for over 20 years, she finally sought out a specialist in endometriosis. It was at the time it was decided that further investigation was required in the form of a laparoscopy.

“Post-surgery, I was relieved to learn they had identified and removed endometriosis,” Larissa said. “The relief from the debilitating pain and diagnosis restored my quality of life.”

Unfortunately, the relief was short-lived. After 8 pain-free months, it returned with greater intensity. Larissa coped by incorporating exercise and adhering to a low-inflammatory diet.

“Strangely, the gym provided 45 minutes of respite despite the persistent pain,” she remembered.

In December last year, Larissa underwent additional surgery, including a hysterectomy and removal of more endometriosis lesions.

“While the hysterectomy won’t cure endometriosis, there is hope for longer periods between lesion growth,” Larissa said. “To those experiencing pain or other symptoms, my advice is to consult a specialist without delay—pain is not normal.”

The Worldwide Endo March is a worldwide campaign aimed at raising awareness of Endometriosis. For more information you can visit www.endometriosisaustralia.org or you can contact the Timboon Clinic on 5558 6088 to make an appointment with our Community Health Nurse or one of our GPs.