As something of an invisible sibling to the more well-known endometriosis, adenomyosis is a disease that brings its sufferers a double whammy of trouble as they experience both the typical normalisation and underestimation of their pain and a higher rate of misdiagnosis. Here’s what you need to know about adenomyosis – including everything from symptoms to diagnosis.

You’d be forgiven for thinking adenomyosis is a rare disease given the lack of awareness and education around it, but prepare to be shocked – around 1 in 5 women are afflicted with the condition. Yikes. So why is it so poorly understood? It comes down to inadequate education and a lack of research on the topic – a National Library of Medicine Journal article suggests that, despite its prevalence among women, the research around adenomyosis is significantly lagging behind other reproductive diseases. The article also indicates that a number of conditions raise the risk of developing adenomyosis, with up to 31% of those who have had a hysterectomy for a pelvic organ collapse experiencing the condition and up to 49% for those with abnormal uterine bleeding.

What is adenomyosis?

Adenomyosis is a condition that involves the growth of cells similar to those found in the uterine lining in the muscle wall of the uterus. While adenomyosis is considered more common in women in their 40s, some research has found the mean age of patients to be around 26 years of age, indicating that the disease often shows up early. 

Let’s take a look at some of the most common symptoms of adenomyosis – but keep in mind that some women may present without symptoms:

• Heavy or abnormal menstrual bleeding
• Painful cramps
• Pelvic pain
• Blood clots during periods
• Pain during sexual intercourse
• Infertility

You might notice a double-up on a number of symptoms that are common with endometriosis – but the key difference between this disease and endometriosis comes down to the place these cells are growing. With endometriosis, the tissue grows outside the uterus, but with adenomyosis the tissue grows within the muscle wall of the uterus itself. It’s worth noting that many women with the condition do also have endometriosis, with a study from 2017 finding around 42% of those with adenomyosis also had endometriosis, while another study found a prevalence of endometriosis in a whopping 80% of participants.

How is adenomyosis diagnosed?

A transvaginal ultrasound is a common diagnostic method, as the doctor can rule out other potential causes for the pain, along with getting a better picture of what’s happening. MRI scans are also used to diagnose adenomyosis as they can provide accurate images of your internal organs, along with indications of abnormalities that align with adenomyosis.

The takeaway

Adenomyosis can significantly reduce the quality of women’s lives, with debilitating pain and heavy bleeding, many find their daily activities, work, social commitments and general enjoyment of life are affected by their condition. We also know that those with the condition are at a higher risk for developing anaemia, particularly if heavy bleeding is one of the symptoms – this can result in fatigue, dizziness and even depression.

If you’re having symptoms, reach out to your doctor – as endometriosis sufferer Clara Mearns says, it’s essential to be persistent and advocate for yourself in a world where women’s pain is so often dismissed.

“Change GPs and keep pushing, ask for testing and keep going until you get an answer,” the Aussie mum says. “Health is complex and it sometimes takes multiple people to help tell the story. You need to find those people; the health professionals won’t always give you access to them.”

Read more about her endometriosis story HERE.