My journey with adenomyosis

Unfortunately, when it comes to menstrual health, far too many people are told that pain, fatigue, and bloating are simply part of the experience. I was told that many times. In fact, I was told that pain during a period was not an illness, that I simply had to endure. However, for those living with adenomyosis, these symptoms can be persistent, debilitating, and everything but normal. This often-overlooked condition impacts the quality of life for millions, yet many go years without a proper diagnosis. I had my first menstruation at 13 years old, and I heard the word adenomyosis for the first time at the age of 32.

In this post, we’ll explore the subtle symptoms of adenomyosis, the challenges of diagnosis—particularly in resource-limited settings like Mozambique—and the critical role self-advocacy plays in getting the care you deserve.

Recognizing the Subtle Symptoms

In my previous post, I spoke about what adenomyosis really is and the first identifiable common symptoms of the illness. Here we will delve into the other symptoms that can fly under the radar when associated with adenomyosis:

• Chronic fatigue: Persistent tiredness that doesn’t improve with rest.
• Abdominal bloating: Often mistaken for digestive problems or PMS.
• Pain during sex: A symptom many are hesitant to mention, but an important red flag.
• Pelvic pressure or chronic pain: May occur throughout the menstrual cycle, not just during periods.

These symptoms are frequently minimized or misdiagnosed, leading to years of unnecessary suffering. Many people spend years visiting doctors, being told their symptoms are “normal,” or being misdiagnosed with conditions like fibroids.

The most common diagnostic tools include:

• Transvaginal ultrasound: Often the first step, but its accuracy varies.
• MRI: Considered more precise and effective in identifying adenomyosis.

Without these tools, diagnosis is nearly impossible, which is why access to quality imaging plays such a critical role in identifying the condition.

If you’re experiencing symptoms and feel like you’re not being heard, speak up. Unfortunately, many patients—especially women and people in marginalized communities—have their pain dismissed or downplayed. Keeping a symptom journal, requesting specific diagnostic tests, and seeking second opinions can be powerful tools in your journey.

Remember: you are the expert on your own body. Trust your instincts, and don’t stop advocating until you get the answers you need.

Barriers and Challenges to Diagnosis in Mozambique

In countries, such as my beautiful Mozambique, and I also believe in similar settings, the journey to diagnosis can be even more challenging. Limited access to advanced imaging equipment such as MRIs, a shortage of trained specialists, and cultural stigmas around menstrual health all contribute to delays in diagnosis.

People in rural areas may have to travel long distances to access even basic healthcare. Without proper resources, adenomyosis may remain undetected, leaving individuals without relief or treatment options.

.To improve the lives of those living with adenomyosis, especially in underserved areas, we need:

• Increased awareness among healthcare providers and the public.
• Better access to diagnostic tools like ultrasounds and MRIs.
• Educational campaigns that break down menstrual health taboos.
• Global health initiatives that prioritize gynecological health in low-resource settings.

Adenomyosis is real, and so is the suffering it causes. If you think you might have it, don’t wait—track your symptoms, talk to your doctor, and push for answers.

Pain isn’t “just part of being a woman.” It’s a signal—and one that deserves attention. I pray you continue to search for the attention your body needs and deserves.

With Love,

Neusa