Why diagnosing endometriosis often takes many years

 Endometriosis is a chronic inflammatory condition in which tissue similar to the lining of the uterus is also found outside the uterus. Symptoms include menstrual pain, chronic pelvic pain, pain during intercourse, and in some cases fertility problems.

Endometriosis affects up to one in ten women and girls of reproductive age, but for many, the path to diagnosis is both long and complex.

Now, two new studies from Aarhus University show that a significant part of the explanation can be found in primary care, where the condition is often difficult to recognise in its early stages.

The studies were conducted as part of the EU-funded FEMaLe project and are based on interviews with general practitioners in Denmark and the Faroe Islands. They offer insight into doctors’ day-to-day clinical practice and the diagnostic considerations they make when encountering patients with symptoms of endometriosis.

“Primary care plays a crucial role as the first point of contact in the healthcare system. Our studies show that endometriosis is often difficult to recognise because the symptoms are unclear and overlap with many other conditions,” says Ulrik Bak Kirk, co-author of both studies and former scientific coordinator of the FEMaLe project at Aarhus University.

Symptoms rarely fit neatly into a box

In one of the studies, researchers examined Danish GPs’ diagnostic considerations based on three clinical cases that reflect very different ways in which endometriosis may present. The doctors were not informed of the diagnosis in advance.

The results show that GPs are generally good at recognising and acting on classic gynaecological symptoms. However, when symptoms are non-specific, for example gastrointestinal complaints, endometriosis is less likely to be considered.

At the same time, cyclical symptoms such as bloating and mood changes play an important role, but they are not always systematically explored.

“When symptoms do not follow the expected pattern, the condition can easily be overlooked. This points to a need for a more systematic approach, even when symptoms are diffuse,” says Ulrik Bak Kirk.

The study also indicates that stigma and taboos surrounding menstruation and gynaecological symptoms may still influence both patients’ help-seeking behaviour and the doctor’s clinical assessment.

In addition, the researchers identify so-called “diagnostic hierarchies”, where certain conditions are prioritised over others during the diagnostic process. This may mean that endometriosis is only considered later in the diagnostic process.

“We see a tendency for endometriosis to be considered only after other explanations have been ruled out,” says Ulrik Bak Kirk.

Need for better collaboration

In the second study, general practitioners in the Faroe Islands describe their concrete experiences with patients presenting with symptoms of endometriosis.

Here, GPs call for closer collaboration with specialists, improved referral pathways, and greater knowledge about the many different presentations of the condition.

“If we are to shorten the time to diagnosis, it requires not only more knowledge. It also requires us to organise care differently and work more closely across sectors. Otherwise, patients risk being passed around the system without clarification,” says Ulrik Bak Kirk.

The researchers highlight several areas that could strengthen diagnostics in primary care:

• Increased awareness of non-gynaecological symptoms of endometriosis
• More systematic exploration of cyclical symptoms
• Strengthened interdisciplinary collaboration
• Targeted continuing professional development 

The studies from the FEMaLe project contribute new knowledge that may help improve patient pathways and reduce delays in the diagnosis of endometriosis.

“We already know much more than is currently being translated into practice. The major challenge is not only to produce knowledge, but to ensure that it is applied in the clinic,” says Ulrik Bak Kirk.