BBC presenter Naga Munchetty revealed last year that she suffered from adenomyosis, a chronic condition which affects the uterus. She said her pain could leave her unable to move and that a recent flare-up was so intense her husband had to call an ambulance.
Yet many people have never heard of the condition, even though it affects up to one in five women.
Adenomyosis can cause symptoms such as irregular, heavy menstrual bleeding and pelvic pain. The severity of symptoms varies among patients: up to a third of women with adenomyosis may have minimal or no symptoms.
The condition can also affect fertility. Women with adenomyosis who become pregnant are at increased risk of miscarriage, premature birth, pre-eclampsia, and bleeding after delivery.
So, what causes adenomyosis, and how is it diagnosed and treated? There’s still a lot we don’t understand about this disease, but here’s a little bit of what we know so far.
What causes adenomyosis?
There are two key layers in the uterus. The endometrium is the inner layer where embryos implant. If there is no pregnancy, this layer disappears over a period of time.
The myometrium is the muscular layer of the uterus. It expands during pregnancy and is responsible for contractions. In people with adenomyosis, cells that look like the endometrium are in the wrong place: the myometrium.
Although a large number of women with adenomyosis also have endometriosis, adenomyosis is a separate disease from endometriosis.
In endometriosis, endometrial-like cells are also found in the wrong place, but in this case outside the uterus, mainly in the pelvic cavity.
Through research, public engagement and social media, awareness of endometriosis has increased in recent years. However, adenomyosis is still relatively little known.
Diagnostic options are changing and improving
Adenomyosis is a difficult disease to diagnose. Historically, the presence of endometrial-like cells in the myometrium could only be verified by pathological evaluation where the myometrium was examined under a microscope after a hysterectomy (surgery to remove the uterus).
In recent years, the number of diagnoses has increased thanks to the development of imaging technologies such as MRI and detailed pelvic ultrasound.
Although adenomyosis is now commonly identified without the need for a hysterectomy, doctors are still working to develop a standardized method of non-surgical diagnosis.
As a result, it is unclear how many women suffer from adenomyosis. Although we know that approximately 20 percent of women who have had a hysterectomy for reasons other than suspected adenomyosis have evidence of this condition on pathologic evaluation.
Adenomyosis is a complex disease
The type of tissue growth of adenomyosis in the myometrium can be either focal (affecting part of the uterus) or diffuse (affecting a large muscular area) lesions.
Adenomyosis can be classified based on the depth of invasion of endometrial-like tissue into the myometrium.
Scientists and doctors are still studying whether the type or depth of lesions is related to symptoms – the severity of symptoms and lesions do not always match.
We don’t yet understand why some women develop adenomyosis, although evidence shows that the prevalence increases with age.
The region between the endometrium and myometrium is thought to become damaged, either by the natural processes of the menstrual cycle, pregnancies and childbirth, or by medical procedures.
In some women, damage to the endometrial tissue layer does not heal as it should and endometrial-like cells enter and grow abnormally in the myometrium. These disrupt the normal functions of the myometrium, leading to pain and bleeding.
It is possible that various mechanisms may contribute and that there is not a single common pathogenic factor behind adenomyosis.
How is adenomyosis treated?
Treatment strategies include hormonal medications such as oral contraceptives, progesterone-containing pills, insertion of a progesterone-releasing coil (e.g., Mirena), or a medication called GnRHa that stops the natural production of sex hormones.
Non-hormonal treatments include tranexamic acid. These treatments aim to minimize menstrual bleeding. Pain is often treated with nonsteroidal anti-inflammatory drugs.
Treatments that work for some women don’t work for others, adding weight to the argument that there is more than one type of adenomyosis. Treatment strategies should be tailored to patients, based on their fertility wishes and symptoms.
If medical treatments do not provide adequate relief of symptoms, there are surgical options, namely removal of focal lesions or hysterectomy.
What awaits us?
Although adenomyosis is a common disorder that affects many women, including those of childbearing age, it does not receive enough clinical and research attention.
There is also a lack of knowledge and awareness of adenomyosis among many healthcare professionals and the public. This needs to change so that we can improve our understanding of the disease, diagnosis and treatment options.
Scientists and doctors specializing in adenomyosis are still searching for an accurate, non-invasive diagnostic method and, hopefully, a cure one day.
Jen Southcombe, Principal Investigator/Group Leader, Nuffield Department of Women’s and Reproductive Health, University of Oxford and Nura Fitnat Topbas Selcuki, PhD Student, Nuffield Department of Women’s and Reproductive Health, University of Oxford
This article is republished from The Conversation under a Creative Commons license. Read the original article.
An earlier version of this article was published in May 2023.
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