While adenomyosis commonly presents with symptoms such as pelvic pain and heavy menstrual bleeding, there are some less typical symptoms that you may experience – and our medical system’s lack of awareness around these telling signs is one of the drivers of low diagnosis rates. Here’s what to look out for.

Before we take a look at the unusual signs of adenomyosis that your doctor probably won’t flag, let’s unpack why it’s so important to get that early diagnosis: 

• Early Detection and Diagnosis: Unusual symptoms may indicate underlying health conditions that require prompt medical attention. Identifying these symptoms early can lead to earlier detection and diagnosis of potential health problems, including adenomyosis. Early diagnosis allows for timely intervention and management, which can improve treatment outcomes and quality of life.
• Prevention of Complications: Some medical conditions, including adenomyosis, can lead to complications if left untreated. For example, untreated adenomyosis may progress and worsen over time, leading to more severe symptoms and potentially impacting fertility or quality of life. Prompt diagnosis and treatment can help prevent or minimise complications associated with adenomyosis and other health conditions.
• Peace of Mind: Pursuing further testing and investigation for unusual symptoms can provide peace of mind by either ruling out serious health concerns or facilitating early intervention if a problem is detected. Knowing the cause of unusual symptoms can alleviate anxiety and uncertainty, allowing individuals to take appropriate action to address their health concerns.
• Improved Communication with Healthcare Providers: Advocating for further testing and investigation demonstrates proactive involvement in one's healthcare and fosters open communication with healthcare providers. By sharing concerns about unusual symptoms and requesting additional evaluation, individuals can work collaboratively with their healthcare team to determine the underlying cause of their symptoms and develop a personalised treatment plan.
• Personal Empowerment: Taking an active role in one's healthcare empowers individuals to advocate for their own well-being and make informed decisions about their health. By staying alert to unusual symptoms and seeking appropriate medical attention, individuals can play an active role in maintaining their health and addressing potential health issues promptly.

So let’s take a look at some of those surprising signs that are worth investigating.

Lower Back Pain

In addition to pelvic pain, some women with adenomyosis may experience chronic lower back pain that is not directly related to their menstrual cycle. This pain may be dull or achy and may worsen with prolonged standing or physical activity.

Bladder Symptoms

Adenomyosis can sometimes cause bladder-related symptoms such as urinary urgency, frequency, or discomfort. This may be due to the proximity of the uterus to the bladder and the pressure exerted by the enlarged uterus on surrounding pelvic structures.

Gastrointestinal Issues

Adenomyosis can occasionally manifest with gastrointestinal symptoms such as bloating, constipation, or diarrhea. These symptoms may be due to the proximity of the uterus to the intestines and the impact of adenomyosis-related inflammation on bowel function.

Pain During Intercourse

While pelvic pain is a common symptom of adenomyosis, some individuals may experience pain specifically during sexual intercourse (dyspareunia). This discomfort may be related to the inflammation and sensitivity of the pelvic tissues affected by adenomyosis.

Leg Pain

In rare cases, adenomyosis may cause referred pain to the legs. This pain may be experienced as a dull ache or throbbing sensation in the thighs or lower legs and may be exacerbated by physical activity or prolonged standing.

It's important to note that these unusual symptoms may also be associated with other medical conditions, so it’s vital to check in with your doctor and undertake further testing. Individuals experiencing any of these symptoms, especially in conjunction with more typical adenomyosis symptoms, should seek evaluation by a healthcare provider for proper diagnosis and management – and remember, if your doctor won’t listen, don’t hesitate to walk out and find a new one.

The Typical Symptoms of Adenomyosis

Let’s take a look at what’s commonly associated with the condition:

• Pelvic Pain: The hallmark symptom of adenomyosis is pelvic pain, which can range from mild to severe. This pain is often described as dull, aching, or cramping and may be constant or intermittent. The pain may worsen during menstruation or with certain activities.
• Heavy Menstrual Bleeding: Adenomyosis can cause abnormally heavy or prolonged menstrual bleeding (menorrhagia). This may lead to the passage of large blood clots and require frequent changing of menstrual products.
• Menstrual Cramps: Individuals with adenomyosis may experience severe menstrual cramps (dysmenorrhea) that are not adequately relieved by over-the-counter pain medications. These cramps may begin before menstruation and persist throughout the menstrual period.
• Enlarged Uterus: Adenomyosis can cause the uterus to become enlarged and tender to the touch. This enlargement is often felt as a diffuse, boggy swelling of the uterus, rather than a discrete mass.
• Painful Intercourse: Some individuals with adenomyosis may experience pain during sexual intercourse (dyspareunia), which can be related to the inflammation and sensitivity of the pelvic tissues affected by adenomyosis.
• Irregular Bleeding: Adenomyosis may also cause irregular menstrual bleeding patterns, including spotting between periods or irregular cycles.

It's important to note that the severity and combination of symptoms can vary among individuals with adenomyosis. Additionally, some individuals may be asymptomatic and only discover they have adenomyosis during imaging studies or surgical procedures performed for other reasons. If you suspect you have adenomyosis or are experiencing symptoms, it's essential to consult with a healthcare provider for proper evaluation and management.

Dealing with Dismissive Doctors

While women’s symptoms and concerns are often taken less seriously across the board – ever hear how women are twice as likely to die from a heart attack than men? – endometriosis and adenomyosis are two of the major conditions women are left to wait in the dark for a diagnosis, in spite of worsening symptoms and moving further into stages of the disease. One  study published in the Journal of Women's Health reported that women with endometriosis experienced an average delay of 6.7 years from symptom onset to diagnosis. The issue of doctors not taking women's pain seriously is a significant barrier that many women face when seeking diagnosis and treatment for conditions like adenomyosis – the list is endless, really, but we’ll share a few of the major eye-openers:

• Research has shown that women are less likely than men to receive adequate pain management in healthcare settings.
• A study published in the Journal of Pain Research found that women were less likely to receive opioid analgesics for acute abdominal pain in emergency departments compared to men, despite reporting similar pain intensity.
• Studies have documented healthcare providers' tendency to underestimate women's pain and symptoms compared to men's. Research published in the Journal of Women's Health found that healthcare providers were more likely to attribute women's pain to psychological factors or emotional distress, leading to delays in diagnosis and inadequate treatment.
• Women may receive different treatment recommendations for pain and symptoms compared to men, which can contribute to disparities in healthcare outcomes. A study published in JAMA Internal Medicine found that women were less likely than men to be referred for specialty pain management services and were more likely to receive sedatives or antidepressants for chronic pain conditions. Yikes, talk about your classic ‘it’s all in your head’ line. What woman hasn’t heard that one? 

Gender bias in healthcare can have profound consequences for women's health outcomes and quality of life. Research has shown that women with chronic pain conditions may experience higher levels of disability, decreased quality of life, and increased healthcare utilisation compared to men, highlighting the importance of addressing gender disparities in pain management and treatment. There are several reasons for this bias: 

Historical Medical Bias: Throughout history, medical research and understanding of pain have largely been based on male experiences and physiology. As a result, there is a pervasive societal belief that women have a higher pain tolerance or that their pain is exaggerated or psychosomatic. This bias can lead healthcare providers to dismiss or minimise women's pain symptoms, including those associated with adenomyosis.

Inadequate Medical Training: Medical education and training may not adequately address the unique manifestations of pain in women or the prevalence of conditions like adenomyosis. As a result, healthcare providers may lack awareness or knowledge about adenomyosis and its symptoms, leading to misdiagnosis or delayed diagnosis.

Stigmatisation of Menstrual Health: Menstrual health issues, including conditions like adenomyosis, have historically been stigmatized and marginalized. This stigma can contribute to a lack of open discussion and awareness about menstrual-related conditions, making it challenging for women to seek help and receive appropriate care.

Diagnostic Challenges: Adenomyosis can be challenging to diagnose due to its nonspecific symptoms and the need for specialized imaging or invasive procedures for definitive diagnosis. Some healthcare providers may be hesitant to pursue further testing or investigation for women presenting with pelvic pain or menstrual irregularities, leading to delays in diagnosis.

Implicit Bias in Healthcare: Implicit biases, which are unconscious attitudes or stereotypes that influence judgments and decisions, can impact how healthcare providers perceive and respond to women's pain. Yep, your doctor could just be plain old sexist! Women, particularly those from marginalised communities, may face additional barriers due to intersecting biases related to race, ethnicity, socioeconomic status, or other factors.

Addressing the problem of doctors not taking women's pain seriously requires systemic changes within the healthcare system, including improved medical education and training, increased awareness and advocacy for women's health issues, and efforts to challenge gender biases and stereotypes in healthcare settings. Additionally, empowering women to advocate for their own health, seek second opinions, and assertively communicate their symptoms and concerns with healthcare providers is essential in overcoming these barriers and improving access to timely diagnosis and treatment for conditions like adenomyosis.

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