Adenomyosis, endometriosis’ little known – but equally as debilitating – cousin, is criminally misunderstood, leaving countless women in the dark with confusing symptoms, inadequate care and misdiagnoses. We’re here to bust 7 of the major myths that prevail despite growing research around the condition.

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Adenomyosis is a condition that – despite the major misunderstandings and misinformation around it – is believed to affect a whopping 20-30% of women of menstruating age. But before we dive into those myths, let’s first unpack what the condition actually entails.

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

Myth 1: Adenomyosis is the same as endometriosis

Fact: While adenomyosis and endometriosis share similarities, they are distinct conditions. 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. 

Myth 2: Adenomyosis only affects older women

Fact: Adenomyosis is often associated with middle-aged women who have had children, but it can affect individuals of any age, including those who have not given birth. While it typically occurs in women aged 40-50, younger women and even adolescents can develop adenomyosis. 

Myth 3: Pregnancy cures adenomyosis

Fact: Pregnancy may alleviate adenomyosis symptoms temporarily for some individuals, as hormonal changes during pregnancy can suppress the condition. However, adenomyosis can persist or recur after pregnancy, especially if symptoms were severe before conception. Additionally, pregnancy is not a guaranteed cure and should not be relied upon as a sole treatment for adenomyosis.

Myth 4: Hysterectomy is the only treatment for adenomyosis

Fact: While hysterectomy (removal of the uterus) is a definitive treatment option for adenomyosis, it is not the only choice, especially for individuals who wish to preserve their fertility. There are various medical and surgical treatments available to manage adenomyosis symptoms, such as hormonal therapies, nonsteroidal anti-inflammatory drugs (NSAIDs), and minimally invasive procedures like uterine artery embolisation or endometrial ablation.

Myth 5: Adenomyosis always causes severe pain and heavy bleeding

Fact: While pain and heavy menstrual bleeding are common symptoms of adenomyosis, not all individuals experience them to the same degree. Some may have mild symptoms or be asymptomatic altogether. Adenomyosis can manifest differently from person to person, with symptoms varying in severity and type.

Myth 6: Adenomyosis always leads to infertility

Fact: While adenomyosis can be associated with infertility, especially in severe cases, it does not inevitably lead to an inability to conceive. Many individuals with adenomyosis are still able to become pregnant and carry a pregnancy to term. However, adenomyosis may affect fertility by disrupting the uterine environment or causing implantation issues. Fertility treatments and assisted reproductive technologies can often help individuals with adenomyosis conceive. 

Myth 7: Adenomyosis is a rare condition

Fact: Adenomyosis is more common than many people realise, although it may be underdiagnosed due to its varied and often nonspecific symptoms. Studies suggest that adenomyosis may affect up to 20-30% of women of menstruating age and is even more prevalent in certain populations, such as those with a history of uterine surgery or childbirth. Increasing awareness and understanding of adenomyosis can help improve diagnosis and management for affected individuals.

Understanding the facts about adenomyosis is crucial for accurate diagnosis and effective management. Dispelling these myths can empower individuals to seek appropriate medical care and support for this often-misunderstood condition. If you suspect you have adenomyosis or are experiencing symptoms, consult a healthcare provider for evaluation and personalised treatment options.

Why Are Diagnosis Rates So Low?

With an estimated 20% of women affected, you might be wondering why we don’t hear more about this condition! Let’s find out.

Normalisation of Symptoms: Many individuals may perceive symptoms such as menstrual pain and heavy bleeding as normal aspects of menstruation, leading them to dismiss or downplay their symptoms and not seek medical attention. As a result, adenomyosis may go undetected or untreated for an extended period.

Nonspecific Symptoms: Adenomyosis often presents with symptoms such as pelvic pain, heavy menstrual bleeding, and discomfort during intercourse, which can overlap with other gynecological conditions like endometriosis or fibroids. The nonspecific nature of these symptoms can lead to misdiagnosis or delayed diagnosis.

Lack of Diagnostic Tools: Adenomyosis can be challenging to diagnose definitively without invasive procedures such as surgery. While imaging techniques like ultrasound and MRI can aid in diagnosis, they may not always provide clear or conclusive results. This reliance on invasive or specialized diagnostic methods can contribute to underdiagnosis, especially in primary care settings where access to advanced imaging may be limited.

Limited Awareness Among Healthcare Providers: Adenomyosis may not receive the same level of attention or awareness as other gynecological conditions, leading to healthcare providers being less likely to consider it as a potential diagnosis. This can result in missed opportunities for early detection and appropriate management.

Stigma and Taboo Surrounding Menstrual Health: Societal taboos and discomfort discussing menstrual health issues openly can hinder conversations about conditions like adenomyosis. This lack of open dialogue may contribute to individuals feeling embarrassed or reluctant to seek help for their symptoms, further perpetuating underdiagnosis and low awareness.

Addressing these challenges requires efforts to improve education and awareness about adenomyosis among both healthcare providers and the general public. Increased advocacy, research, and public health initiatives focused on menstrual health can help destigmatise discussions about conditions like adenomyosis and facilitate earlier detection and intervention. To learn more about the condition and what you can do, head on over to Adenomyosis.

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