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Endometriosis and Adenomyosis - Why advocating for yourself matters

The Wesley Hospital patient Samantha.

Samantha had endured a 14-year history of heavy periods and pain, to the point of not being able to sleep due to the agony.

“I would lie awake at night and fret over the pain and ask myself how on earth I would be able to turn up to work and do my job effectively the next day, as I didn’t think period pain was reason enough to take sick leave, even though it was debilitating,” Samantha said.

While Samantha was proactive and did visit several doctors, over the 14-year period, unfortunately, as can often be experienced by women with undiagnosed endometriosis, her pain was downgraded as ‘normal’ and the advice she was given was a band-aid solution. Even when some of those doctors listened to her pain and sent her off for scans, the results came back to show nothing out of the ordinary.

“It’s a lot for me to go, ‘Right, I’ve got a problem and I need to go see someone about it’, as I hate going to the doctors,” Samantha recalls.

But her pain was real and physical. After enduring close to six months of bleeding, Samantha didn’t give up and decided to continue to advocate for herself.

“It was only when I went on holidays with friends, that one of my friends said, ‘Have you heard of endometriosis? All your symptoms sound like that.’.”

Samantha was shocked. She had never heard of endometriosis, despite years of seeing doctors about her symptoms. She booked an appointment with a GP whom she trusted and asked for a referral to a specialist at The Wesley Hospital. It was there that Samantha finally got her diagnosis of not only endometriosis, but also of adenomyosis.

“It was so refreshing to hear a doctor talk about the pain and the excessive bleeding not being normal. That my pain was real and explained by science and medicine.”

Endometriosis is a disease where the tissue similar to the tissue that makes up the lining of the uterus – the endometrium  – grows elsewhere in the body and adenomyosis is where the same tissue that lines the uterus, known as endometrial tissue, is present within and grows into the muscular walls of the uterus.

Since her diagnosis, Samantha has been working with a health professional to get the best treatment for her. In the last six months, her treatment and circumstances have been the best ever.

“The evidence base for treatment is still developing but I am finally getting the help and treatment I need to get on the road to recovery. I wanted to share my story, so that people recognise that this is not normal and advocate for themselves.”

Endometriosis is experienced by one in nine Australian women. For many women, however, diagnosis of endometriosis can often take more than a decade. With awareness, this will change.

“If you are not satisfied with one doctor’s opinion you should go seek a second, or even third, opinion.” Samantha advises.

Want to help research into better treatment of endometriosis? Why not donate today? Donate to Wesley Medical Research today and help change the lives of women with endometriosis.

The Wesley Hospital offers rehabilitation to endometriosis patients. Find out more about Day Rehabilitation.

For more information about endometriosis and pelvic health, please visit:

QENDO – to help anyone affected by endometriosis, adenomyosis, PCOS, infertility or pelvic pain, by offering them the tools, services and programs to understand and take control of their health.

Endometriosis Australia – endeavours to increase recognition of endometriosis, provide endometriosis education programs, and help fund endometriosis research.

Pelvic Pain Foundation of Australia – a not-for-profit organisation formed to build a healthier and more productive community by improving the quality of life of people with pelvic pain.

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