From symptoms to treatment, two women’s health experts explain this little-known disease

BBC presenter Naga Munchetty recently revealed that she has adenomyosis, a chronic condition that affects the uterus. She spoke of how her pain can make her unable to move and how a recent flare-up was so intense her husband had to call an ambulance.

Yet many people have never heard of this disease, although 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 from patient to patient – ​​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 have an increased risk of miscarriage, premature delivery, preeclampsia, 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 condition, but here’s a bit of what we know so far.

What causes adenomyosis?

There are two key layers in the womb. The endometrium is the inner layer where embryos implant. If there is no pregnancy, this layer comes off for a period. The myometrium is the muscular layer of the uterus. It expands during pregnancy and is responsible for contractions. In people with adenomyosis, cells resembling the endometrium are found 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, cells resembling the endometrium are also found in the wrong place, but in this case outside the uterus, mainly in the pelvic cavity.

Thanks to research, public engagement and social media, awareness of endometriosis has increased in recent years. Yet adenomyosis is still relatively unknown.

Diagnostic options are evolving and improving

Adenomyosis is a difficult disease to diagnose. Historically, the presence of endometrium-like cells in the myometrium could only be checked by pathological evaluation where the myometrium is examined under a microscope after a hysterectomy (surgery to remove the uterus).

Recent years have seen an increase in diagnostics with the development of imaging technologies such as MRI and detailed pelvic ultrasound. Although adenomyosis is now commonly identified without requiring a hysterectomy, doctors are still working to develop a standardized method of non-surgical diagnosis.

As a result, it is not known exactly how many women have adenomyosis. Although we know that approximately 20% of women undergoing hysterectomy for reasons other than suspected adenomyosis present evidence of the condition upon pathologic evaluation.

Adenomyosis is a complex disease

The type of tissue growth of adenomyosis in the myometrium can be either focal lesions (affecting part of the uterus) or diffuse lesions (affecting a large muscle area). Adenomyosis can be classified based on the depth of endometrial-like tissue invasion into the myometrium. Scientists and doctors are still investigating 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 the prevalence increases with age.

The area between the endometrium and myometrium is thought to be 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 resulting in pain and bleeding.

It is possible that a variety of 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 birth control pills, pills containing progesterone, inserting a progesterone-releasing coil (eg, Mirena), or a drug called GnRHa that shuts down natural production of sex hormones. Non-hormonal treatments include tranexamic acid. These treatments aim to minimize menstrual bleeding. The pain is often treated with nonsteroidal anti-inflammatory drugs.

Treatments that work for some women don’t work for others, which adds 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 sufficiently relieve 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 about adenomyosis among many healthcare professionals and the public. This needs to change so that we can improve our understanding of disease, diagnosis and treatment options.

Scientists and physicians specializing in adenomyosis are still searching for an accurate, non-invasive diagnostic method and, hopefully, one day, a cure.

This article is republished from The Conversation under a Creative Commons license. Read the original article.