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

BBC presenter Naga Manchetti recently revealed that she has adenomyosis, a chronic condition that affects the uterus. She described how her pain was immobilizing her and how her recent seizures were so severe that her husband had to call an ambulance.

As many as 1 in 5 women have the disease, yet many have never even heard of it.

Adenomyosis can cause symptoms such as irregular and heavy menstrual bleeding and pelvic pain. The severity of symptoms varies from patient to patient. Up to one-third of women with adenomyosis may have few or no symptoms.

The condition can also affect fertility. Women with adenomyosis are at increased risk of miscarriage, premature birth, preeclampsia, and postpartum bleeding if they become pregnant.

So what causes adenomyosis, and how is it diagnosed and treated? There is still a lot we don’t know about this condition, but here’s what we know so far. I’ll explain a little.

What causes adenomyosis?

The uterus has two important layers. The endometrium is the inner layer in which the embryo implants. If you are not pregnant, this layer sheds during your period. Myometrium is the muscle layer of the uterus. It expands during pregnancy and causes contractions. In people with adenomyosis, endometrial-like cells are present in the wrong place, in the myometrium.

Many women with adenomyosis also have endometriosis, but adenomyosis is a different disease. In endometriosis, endometrial-like cells are also found in the wrong place, in this case outside the uterus, mainly in the pelvic cavity.

Awareness of endometriosis has increased in recent years thanks to research, public activism, and social media. However, adenomyosis is still not well known.

Read more: Adenomyosis causes pain, cramps, and infertility, but you’ve probably never heard of it.

Diagnostic options have changed and improved

Adenomyosis is a difficult disease to diagnose. Historically, the presence of endometrial-like cells within the myometrium could only be verified by pathological evaluation, which examines the myometrium under a microscope after a hysterectomy (an operation to remove the uterus).

Diagnosis has increased in recent years due to the development of imaging technologies such as MRI and detailed pelvic ultrasonography. Although adenomyosis is now commonly diagnosed without requiring a hysterectomy, physicians are still working to develop standardized methods for nonsurgical diagnosis.

As a result, it remains unknown exactly how many women have adenomyosis. Approximately 20% of women who have had a hysterectomy for reasons other than suspected adenomyosis have evidence of adenomyosis on pathologic evaluation.

Adenomyosis is a complex disease

The type of adenomyosis tissue that grows within the myometrium is either a focal lesion (affecting part of the uterus) or a diffuse lesion (affecting a large area of ​​muscle). Adenomyosis can be further classified according to the depth of invasion of endometrial-like tissue into the myometrium. Scientists and doctors are still investigating whether lesion type and depth are related to symptoms, but symptoms and lesion severity do not always match.

It is not yet known why some women develop adenomyosis, but there is evidence that prevalence increases with age.

The area between the endometrium and myometrium is believed to be damaged by natural processes such as the menstrual cycle, pregnancy, childbirth, or by medical procedures. In some women, damage to the endometrial tissue layer does not heal normally, and endometrial-like cells invade the myometrium and proliferate abnormally. These disrupt the normal function of the myometrium, causing pain and bleeding.

Various mechanisms may be involved and there may not be a single common disease cause behind adenomyosis.

Naga Manchesterti at the Virgin Media British Academy Television Awards 2019 in London.
BBC presenter Naga Manchetti recently revealed that he has adenomyosis.
EPA-EFE/Neil Hall

How is adenomyosis treated?

Treatment strategies include oral contraceptives, progesterone-containing tablets, insertion of progesterone-releasing coils (such as Mirena), or hormonal agents such as drugs called GnRHa that stop the natural production of sex hormones. Non-hormonal therapies include tranexamic acid. These treatments are aimed at minimizing menstrual bleeding. Pain is often treated with nonsteroidal anti-inflammatory drugs.

The argument that there are multiple types of adenomyosis is all the more important because treatments that work for some women do not work for others. Treatment strategies should be tailored to the patient according to the patient’s fertility desires and symptoms.

If medical treatment does not adequately relieve symptoms, surgical options such as removal of local lesions or hysterectomy are available.

Read more: Endometriosis: 3 reasons care hasn’t improved yet

What lies ahead?

Adenomyosis is a common disease that affects many women, including those of reproductive age, but has received insufficient clinical and research attention. Additionally, there is a lack of knowledge and awareness of adenomyosis among many healthcare professionals and the general public. This situation needs to change for a better understanding of the condition, diagnosis and treatment options.

Scientists and physicians specializing in adenomyosis are still on a quest to find an accurate, non-invasive method of diagnosis and, hopefully, one day, a cure.

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