Endometriosis – an underdiagnosed and downplayed illness

It was when Julia went off the birth control pill for the first time at the age of 22 that it all began. Pain during sex and menstruation, when on the toilet – cramps and aching to the point of nausea. «It felt like I was giving birth. I couldn’t walk and had contraction-like pain in my lower abdomen,» Julia recounts. It’s not until six years later that she gets a diagnosis. Julia has endometriosis – something many people have never heard of. And yet, it’s the second most common disorder in females.

Estimates of how many women suffer from it vary widely. The conservative estimate is at least 10 to 15 per cent of women of reproductive age; others are as high as 30 per cent.

The disease is often related to female infertility. According to the German Stiftung Endometriose Forschung (Endometriosis Research Foundation), the prevalence of endometriosis in abdominal laparoscopies shows that up to 50 per cent of patients who have had a laparoscopy for fertility diagnosis suffer from endometriosis.

Symptoms of endometriosis

The disease manifests in symptoms mainly in the lower abdomen. In their article published in the Österreichische Ärztezeitung (Austrian medical journal) on 25 October 2020, René Wenzl and Alexandra Perricos write: «Every other woman of reproductive age who has chronic lower abdominal pain suffers from endometriosis.» This typically manifests as very painful menstrual pain, but pain during sex, urination or defecation can also indicate endometriosis. All these symptoms may also be present, as in Julia’s case.

Julia’s late diagnosis is no exception. On average, it takes six years to identify the illness in those affected. How can this be? «Women are used to their menstruation being associated with pain,» says gynaecologist and endometriosis expert Dr. Elisabeth Janschek of the Endometriosezentrum LKG Villach (centre for endometriosis at the Villach hospital). But every girl and woman should know that menstruation is not a disease – and it doesn’t necessarily have to hurt.

So, what exactly happens in endometriosis? And does the pain go hand in hand with menstruation?

What’s behind endometriosis

In endometriosis, the endometrium, or lining of the uterus, proliferates outside the uterus. These «islands» of mucous membrane follow the typical female menstrual cycle – just like the regular lining in the uterus, this tissue breaks down and bleeds every four weeks. Since there’s no exit for it, blood and tissue accumulate. Endometrial lesions form, which can lead to inflammation, thickened tissue, scarring and cysts.

In most cases, the scattered endometrial tissue is found within the pelvis, that is on the ovaries and between the uterus and rectum. However, it may also grow in the peritoneum. If allowed to spread undetected for years, the lesions can cause the fallopian tubes to stick together – and lead to infertility. But organs such as the uterus, ovaries, bladder and intestines can also become completely stuck together. In rare cases, the cells can also cross organ boundaries and grow on the kidney, bladder or lungs. «This form of the disease is called deeply infiltrating endometriosis and applies to about 10 per cent of all diagnoses,» says Janschek.

A long road to diagnosis

Why do women get endometriosis in the first place? This remains a mystery, in part because, in recent decades, very little money has been invested in research. But there’s good news from Germany in this regard. From 2023 onwards, 5 million euros are to be made available for research.

For several years now, November has been known as «Movember» to raise awareness for men’s mental health, prostate and testicular cancer; analogue to this, in many countries, March is «Endometriosis Awareness Month». A yellow ribbon serves as its symbol (see cover picture).

In Austria, Dr. Peter Oppelt is an expert in the field of endometriosis. The head of the Johann Kepler University Clinic for Gynaecology, Obstetrics and Gynaecological Endocrinology in Linz has dedicated much effort to understanding the disease for many years. «Twenty years ago, endometriosis carried no weight,» he says. According to him, unlike today, there was hardly any research funding and little education for doctors, resulting in an underdiagnosis among those affected – which continues to this day. «We can assume that there are many more women who have endometriosis without it being diagnosed.»

Interestingly, a diagnosis isn’t necessarily equal to how the condition is experienced. According to the findings, some patients have small endometrial lesions that already trigger pain to the point of fainting. Others, meanwhile, show extensive lesions but have little or no pain. How can this be? That remains unknown. The disease is still a mystery to the medical community.

Julie reaches a self-diagnosis after doing some online research. She thinks she could have endometriosis; she regularly relies on heavy-duty pain killers to get through the first few days of her period. When she brings up her suspicion with the gynaecologist a few months later, the doctor is quite dismissive. «She wanted to prescribe me the pill again. She also said that if I went ahead and had a kid, the symptoms would likely go away on their own.» This is because endometriosis is fuelled by the female hormone oestrogen – and during pregnancy, progesterone gets the upper hand.

Endometriosis: female pain isn’t taken seriously

For three years, Julia waits it out and continues to take painkillers. And then, she finally seeks help after a key experience convinces her to seek out an endometriosis centre. «I went away for the weekend and realised in the car that I was getting my period and hadn’t packed my pain medication. I panicked – and realised for the first time the effect this disease was having on me psychologically.»

A laparoscopy at the centre for endometriosis confirmed what Julia had suspected for years: She had a cyst on her ovary, a clear sign of endometriosis. «I always felt I was crazy, too sensitive or imagining everything. It was so nice to finally know I wasn’t crazy.»

Women’s high pain tolerance and lacking education from research are reasons why many cases of endometriosis remain underdiagnosed to this day. In addition, misdiagnoses are common, and include inflammation of the internal genital organs, PMS, or even psychogenic complaints. And that, of course, has an impact on those affected. Not being taken seriously with your pain makes you doubt yourself and feel abnormal.

Gynaecologist Dr. Janschek has seen time and again that even in cases of supposedly painless endometriosis, it turns out not to be so – indeed, the patient will have simply grown accustomed to the pain. Her recommendation? «Anyone who can’t go to work because of their period, has pain to the point of fainting, and structures their entire daily life around menstruation should be screened for endometriosis.»

And Dr. Peter Oppelt emphasises: «Patients lose a lot of their quality of life due to the disease.» This applied to their professional lives, relationships and otherwise. Those suffering from endometriosis have to deal with severe pain that isn’t normal. In rare cases, it can even lead to organ damage. This makes it all the more important to visit an endometriosis centre with trained specialists in case of suspicion. The disease can only be diagnosed with certainty by means of an abdominal laparoscopy.

Treatment: hormones are usually a must

In part because little is known about the causes of endometriosis, there’s no cure for it yet. Once the diagnosis is made by laparoscopy, there are two treatment options: surgery, usually also by laparoscopy, or hormone therapy. The decisive factor is the age of the patient. «Once the desire to have children is out of the way, we talk to the patient about surgically removing the reproductive organs. In most cases, however, we can treat the disease quite well with conservative hormone therapy,» says Oppelt.

Julia’s surgery was three years ago. The endometriosis lesions were burnt off, and adhesions on the ovaries and intestines removed. Since then, her uterus has been «in hibernation», she says. «I take a very light pill, which means I don’t have a period at all anymore. If I were to have my period, everything could grow back and start all over again.»

Julia says it was very frustrating at first to have only two options: hormones or playing poker with your own infertility. Endometriosis specialist Dr. Janschek is very familiar with patients’ hesitance to use the birth control pill. She advises taking it easy: «I think we need to see it all less dramatically. Hormones are not bad in and of themselves. Yes, this is a chronic disease but, in most cases, it has a mild course that can be managed with hormones. A person with diabetes is also dependent on insulin because we’re unable to replicate the cells that produce insulin.» Julia is doing well on the progestin pill treatment. She’s pain-free, and that’s the most important thing to her.