The years to reach a diagnosis varied across respondents. 30.4% took eight years or over while on the other hand, 25.9% took less than a year. 17.7% took between one to three years and 15.8% took four to seven. 8.2% of respondents remain undiagnosed.

For one woman, getting diagnosed with endometriosis took 30 years of pain and 10 years of infertility.

From her first period, this woman suffered “terrible pain” almost daily and despite visiting “numerous” gynaecologists “no one noticed anything”.

Eventually, it was “accidentally” found that an intrauterine insemination procedure – conducted to help her get pregnant – caused what’s known as a chocolate cyst, and a laparoscopy was undergone to remove it. This is a minimally invasive procedure used to remove things like cysts and appendixes, however, it also examines the organs in the belly.

This laparoscopy confirmed that the woman, at 40 years old, had been suffering from “severe endometriosis”.

“It’s the kind of pain that makes you want to punch a wall and scream,” she wrote.

Common misdiagnoses.

A recurring explanation that respondents got when seeking an answer to their pain was that it was “normal”.

“I was constantly told that what I was experiencing was normal and something every person with a uterus has to go through. I endured constant invalidation of the persistent and extreme pain I felt for over ten years,” one person wrote.

Other common misdiagnoses were gas, irritable bowel syndrome (IBS), issues with the appendix, dysmenorrhea, stress and anxiety. Some were even told they were inventing the pain in a bid to seek attention and sympathy.

The advice from several professionals was to “calm down”, not “make a fuss”, take painkillers and in some cases, “lose weight”.

A couple of women were even told to get pregnant to relieve the pain.

Many respondents had never heard of endometriosis before while others spent years knowing and pleading to get a diagnosis.

“It took 15 years to convince my Maltese gynaecologist to do a laparoscopy, but she refused to operate herself as she thought I was acting stupid,” one woman who likened the pain to “being torn apart” said.

“Endometriosis is a complex inflammatory condition,” gynaecologist specialising in reproductive healthcare Maria Petra Agius says.

Speaking to Lovin Malta, Agius challenged common misconceptions about the condition.

“One misconception is that endometriosis only affects women who want to have children – endometriosis can impact all the pelvic organs and in severe cases, it can also impact the kidneys and urological system and lead to irreversible damage if not diagnosed timely.

“Another misconception is just a bad period – endometriosis is a complex inflammatory condition.

That being said, she assured a better understanding of the condition in recent years has led to major improvements in treatment and diagnosis.

More specifically, improved ultrasound skills have helped diagnose and locate the severity of the condition in a non-invasive way, Agius said.

Meanwhile, recent treatment breakthroughs include the development of medication specifically targeting the endometriosis cells.

“Better understanding of the condition and results obtained from randomised controlled trials have helped guide clinicians to practice evidence-based medicine even with regards to endometriosis surgery techniques and fertility preservation procedures, especially in women who suffer from severe disease and who want to get pregnant (now or in the future),” Agius added.

That being said, the rate of endometriosis is on the rise and not just because of better diagnostic tools. Pregnancy is protective against endometriosis and it helps slow down the progression or even regress the condition.

However, nowadays, one of the factors that may be contributing to a rise in the condition is the fact that women are conceiving at an older age, Agius explained.

“Environmental, genetic and dietary factors also play a vital role, as we know that endometriosis runs in families,” she added.

This means that awareness on the condition is only growing in importance.

“We need to promote more awareness amongst teenagers and young women who might be experiencing early symptoms of a condition, for instance, endometriosis or PCOS.”

“There also needs to be more awareness around sexual health and sexually transmitted diseases. Using reliable sources to obtain information puts a woman in a better position to make informed decisions on her health.”

Concluding with a word of advice for women with endometriosis, Agius said: “Seek expert advice, educate yourself and your loved ones on the condition, join support groups and connect with others who are going through the same problem. However, keep in mind that every woman is unique. Stay positive.”