While you likely know about endometriosis, there’s another disease that presents with similar symptoms but is often overlooked, misdiagnosed and left out of the discussion. You may not have even heard about adenomyosis, with many first finding out about the disease upon diagnosis – Sara Amos found herself in this situation. This is her journey with adenomyosis.

What causes symptoms like chronic pelvic pain, heavy and irregular bleeding, bladder pressure and fertility issues? If endometriosis is popping into your mind, you’re not alone. While it’s the more well-known – but similarly underdiagnosed – disease, there are still a whopping 1 in 5 women dealing with adenomyosis, making its less known reputation particularly dangerous.

After struggling with debilitating periods early last year, Aussie mum and hairdresser Sara set out to find some answers. The 45-year-old shares a few of the painful symptoms that sent her to her doctor.

“The start of 2022 I had experienced very painful cramping and heavy periods, they were also irregular. There was pressure in my lower abdomen and bladder,” she says. “I also experienced clotting during my period. This went on for a few months, I went to the doctor who referred me to a gyno and for a trans vaginal ultrasound.”

Sara was relieved to receive her diagnosis, but shares her surprise at the results – like many, adenomyosis was not a condition she was familiar with.

“I first found out about Adenomyosis at the ultrasound,” Sara says. “I had never heard about it before but was happy to know I had a diagnosis and the condition had a name. I also found out that this was not a life-threatening condition and very common in women aged 40-50.”

So, what is adenomyosis, exactly? Despite the misdiagnoses, it’s not endometriosis or IBS or pelvic inflammatory disease – all of which are mistakenly blamed for the symptoms of adenomyosis, though it’s worth noting that endometriosis is commonly comorbid with the disease. It’s a condition involving the growth of cells similar to those found in the uterine lining are found in the muscle wall of the uterus. 

The difference between this disease and endometriosis comes down to the place these cells are growing – in endometriosis, the tissue grows outside the uterus, but with adenomyosis the tissue grows within the muscle wall of the uterus itself.

Adenomyosis is often misdiagnosed for a number of reasons; there’s the usual trouble with the dismissal and normalisation of women’s pain, leaving many to be brushed off at the doctor’s office, or even hesitating to come in at all. Then, we have the issue where, as we mentioned earlier, the condition is often confused for other diseases like endometriosis due to the overlap in symptoms like painful periods and irregular bleeding.

“We hear so much about Endometriosis and how many women suffer however there is very little talk and media coverage on Adenomyosis which has very similar symptoms,” Sara says. “I myself feel better knowing there is a way of having this diagnosed and it is actually a thing and not something you think is going on in your head.”

The mum-of-two also notes how dangerous the normalisation of pain can be – not just amongst medical professionals, but patients too. 

“I think many women suffer and live with the pain as so many find this a normal part of ageing or reaching peri menopause.”

Sara’s advice to women suffering from adenomyosis and other debilitating conditions is to keep the conversation going – she says it’s the only way we can break down the barriers to open communication.

“Talk about it with other women, I find this so important to talk amongst this among your friends or other women who may also be suffering,” The Aussie hairdresser says. We need to openly talk more about women’s health issues and not make it such a taboo subject. 

“What surprised me the most was when I talked about this with friends and family, no one had heard of it before. I really wish there was more information given to women.”