Outsmarting Endometriosis in Malta: Unveiling the Silent Disease

For many women, period pain is a monthly reality. But for some, that pain, or other unexplained symptoms, might be a sign of a common, yet often misunderstood, condition called Endometriosis.

What is Endometriosis?

Endometriosis is an inflammatory gynaecological condition in which tissue similar to the lining of the uterus is found outside the uterus. The disease is very common, affecting around 10-11% of women worldwide; that is, 1 in 10 females of childbearing age is affected by the disease. Applying this statistic in Malta, this would equate to around 27,500 females.

Signs and Symptoms: What to Look Out For

Endometriosis isn’t just “bad period pain”—it’s a condition that can cause a range of symptoms, and they can be different for everyone. It’s often known for causing debilitating pelvic pain and can sometimes lead to difficulty getting pregnant.

Beyond typical period discomfort, here are some important signs that could point towards endometriosis:

• Severe period pain that stops you from going about your daily life, and isn’t helped by regular pain relief.
• Pain in your pelvic area that lasts throughout the month, not just during your period.
• Pain during or after sex.
• Pain or discomfort when you urinate or have a bowel movement, especially around your period.
• Frequent urges to urinate.
• Constant fatigue or feeling utterly drained.
• Lower back pain.
• Heavy bleeding during your period, or bleeding in between periods.

The Endometriosis Challenge

A major challenge with endometriosis is its significantly delayed diagnosis. Globally, women often wait anywhere from 6 to 12 years to receive a diagnosis, though this can vary. This long wait happens for several important reasons:

1. Overlapping and Misleading Symptoms

• Endometriosis is often called “the great mimicker” because its symptoms frequently overlap with other common conditions like Irritable Bowel Syndrome (IBS), bladder issues, or even general back pain. This makes it incredibly difficult to pinpoint.
• Adding to the confusion, in later stages, the pain might become constant and no longer only occur around your menstrual cycle, making it harder to link back to endometriosis.

2. No Simple “Yes/No” Test

• Unlike some other conditions, there are currently no specific biomarkers for endometriosis. This means there isn’t a simple blood test that can definitively tell you if you have the condition.
• As previously mentioned, common imaging tests like ultrasounds often don’t show endometriosis, even when it’s present.

3. The Culture of Silence and Normalised Pain

• Stigma Around Periods: There’s still a significant discomfort or stigma around discussing periods and period pain openly. This often leads to women suffering in silence for years, only seeking help when their symptoms become truly unbearable, by which time the disease may be more advanced.
• The Myth of “Normal” Pain: Many people still hold the false belief that periods should be painful. This is simply not true. While slight cramping can be normal, pain severe enough to make a person miss school, work, or daily activities is not normal and always warrants investigation.
• Familial Normalisation: If endometriosis runs in families (and it often does), discussions between siblings or mother-child can sometimes lead to dangerous symptom normalisation. Family members might experience similar pain and unknowingly assume it’s just “how periods are” because it’s common in their family.

4. Lack of Awareness

• Unfortunately, there’s still a widespread lack of awareness about endometriosis, both among the general public and, at times, even within the medical community. This can result in symptoms being dismissed, misdiagnosed, or not taken seriously enough.

What to Do If You Suspect Endometriosis

If you experience any of the symptoms we’ve listed and suspect you might have endometriosis, please don’t suffer in silence – it’s crucial to seek medical help.

Your first step should be to visit your family doctor or general practitioner. When you do, it’s very important to clearly vocalise your suspicions of endometriosis. Ask them to issue a referral specifically for suspected endometriosis, rather than a general gynaecological referral to the hospital.

Why is this so important for us here in Malta? A general gynaecological referral can unfortunately take around 4 months for an appointment. However, a much faster track exists for suspected endometriosis, which aims to get you seen quicker – this type of referral currently takes approximately 37 days. Knowing this difference can save you treasured time in getting the care you need.

There’s also good news on the horizon for endometriosis care in Malta: this year, a new clinic dedicated specifically to endometriosis has been announced and is currently in the pipeline. This promises to be a central point for specialised care.

Additionally, you don’t have to go through this journey alone. There’s a wonderful local community support group called Endo Support (Malta), founded by Anita Portelli. They offer invaluable support and a sense of community to fellow “Endo-warriors” who understand what you’re going through.

Last but not least!

If you have already had multiple ultrasounds done, which all came back as normal, do not be disheartened by the lack of diagnosis- it has happened to the best of us endo-warriors. A negative ultrasound, which is the most common diagnostic imaging test carried out due to its readily availability, does not signify a lack of endometriosis.

Do still seek help. If your body is telling you this is not normal, then it isn’t. You know your body better than anyone.