Why is no one talking about adenomyosis?

One in 10 women in the UK have adenomyosis, a uterine condition that causes tissue growth in the womb. While symptoms range from zero to excruciating, little is known about the condition, despite the fact that it affects many. Alice Wade speaks to a doctor to find out what you should know.

Credit: Unsplash, Jonathan Borba

Last June, the government’s women’s health ambassador, Dame Lesley Regan, said that the NHS was “failing women” who suffer from extreme menstrual pain. Speaking on live radio, she insisted that there ultimately needed to be better access for girls to seek specialist support from the get go if they suffer with debilitating pain. 

Her words followed a ripple in conversation after the BBC journalist Naga Munchetty revealed that she had been diagnosed with adenomyosis, a uterine condition that’s often referred to as the “evil ugly sister” of endometriosis. Having experienced years of extreme menstrual pain, the journalist had only just been diagnosed in her 40s. 

For Munchetty and probably most of the population, this is the first she had heard of adenomyosis, a menstrual condition which causes the womb lining to grow into the muscular wall of the womb, despite the fact that it affects one in 10 women. 

Up until July last year, there wasn’t even an NHS information page for adenomyosis, an absolutely baffling fact when you consider the wealth of information available for similarly common menstrual conditions like PCOS and endometriosis, which themselves already don’t get enough coverage. 

“80% of adenomyosis cases affect women between the ages of 40 and 50, compared to just 20% of those under 40. ”

It could be argued that one of the reasons we know more about endometriosis is due to age. Compared with endometriosis, which isn’t associated with a specific age bracket, 80% of adenomyosis cases affect women between the ages of 40 and 50, compared to just 20% of those under 40. 

Given the time it takes for women to get diagnosed (for Naga Munchetty it was over four decades) and the age at which adenomyosis usually surfaces – right before menopause – it’s wouldn’t be wrong to assume that the number of cases is likely much higher and that many women never have the chance to reach a proper diagnosis. 

I was diagnosed with the condition a few weeks ago, at the age of 24. After countless doctor visits, two transvaginal ultrasounds, and a misdiagnosis of PCOS, I heard the word ‘adenomyosis’ for the first time in my life. I’m fortunate enough that I am mostly symptomless and generally only struggle with sporadic pelvic pain. 

Comparably of course, I am one of the lucky ones. Persistence, even systematic fighting, seems to be the only method likely to retrieve accurate, let alone timely diagnosis. And getting one doesn’t necessarily grant you information. 

The literature for this condition is sparse, with even few medical journals covering it. In an effort to shed more light on this common but quieted condition, Sextras enlists the help of Madhu Bagaria, a gynecologic surgeon and endometriosis excision specialist at Pelvic Rehabilitation Medicine, to answer some commonly asked questions about adenomyosis.

What is adenomyosis? 

“Adenomyosis is a benign uterine condition when cells similar to the lining of the uterus are in the muscles of the uterus,” says Bagaria. 

What causes the condition?

Unfortunately, as goes with the territory of women’s health issues, it is not fully understood why people develop adenomyosis. 

Bagaria speculates: “One of the theories proposes that the process is embryologic in origin where the mullerian stem cells undergo differentiation and can lead to proliferation of these cells in the muscles of the uterus.” 

Our genes, immune systems, and hormones also likely play a role in who develops the condition.

How would I know if I had it?

Why many confuse adenomyosis with its more commonly known sister, endometriosis, is because of the pain factor. “Patients with adenomyosis can present with severe menstrual symptoms like pain and cramping during cycles,” says Bagaria.

Perhaps one of the reasons it so often goes unnoticed, is because symptoms are not always rule-abiding and can present themselves differently such as with “bloating, lower abdominal and pelvic pain, painful intercourse, and infertility.”

It’s estimated that a third of women also do not present with any symptoms at all.

How common is it?

As far as information online goes, adenomyosis is about as common as endometriosis in affecting around one in 10 women, though Bagaria’s theory is that it could be even more. While the condition tends to be more common in older women, especially those who’ve had children, symptoms do usually clear up after menopause (a small win).

She says: “Accurate prevalence is still unclear though one study suggested that adenomyosis had a prevalence of 20.9% in the study population where ultrasound was used for diagnosis.”

What makes it different from endometriosis? 

While the pain inducing tissue is roughly the same, the deciphering facts lies in the placement of the growths. “Adenomyosis is when the cells similar to the lining of the uterus are inside the uterus and when they are outside the uterus they are called endometriosis.”

“Adenomyosis can cause a lot of menstrual symptoms along with symptoms similar to endometriosis,” hence the common assimilation. 

What treatments are available? 

Whether you’re worried that you might have adenomyosis or you’ve just been diagnosed, there are a few ways of dealing with it. As usual, the pill is often offered as a way of evening out hormone imbalances, though other medications and forms of pain management can be used as well.

“Medical treatment often involves taking NSAIDS (Non-steroidal anti-inflammatory drugs) while non-hormonal options include birth control pills, levonorgestrel intrauterine devices.”

In the worst cases, going under the knife might be necessary. “Surgeries take the form of adenomyomectomy [removal of the tissue] for focal disease. For diffuse disease, wedge resection of the uterus can be attempted, and finally hysterectomy.” 

“Some people even recommend doing uterine artery embolisation [an alternative procedure to hysterectomy or myomectomy to treat fibroids, in which tiny particles are injected into the blood vessels that lead to the uterus, cutting off blood flow to the fibroid and causing it to shrink] for this condition,” Bagaria adds.