Understanding the expression of endometriosis-related pain: A barrier to overcome

Describing the pain endometriosis patients face is not standard and easy and often underestimated, study reflects

Key Points

Highlight

• The lack of recognition and response to different descriptions of endometriosis-related pain by clinicians seems to be causing the delay in the diagnosis.

Importance

• As one of the most important symptoms of endometriosis, the pain might be expressed in very different ways.
• Recognizing the pain and informing patients about the disease might help to increase their quality of life.

What’s done here

• This is a qualitative interview study performed on 13 French and 13 Australian women.
• It aimed to explore the difference in communicating endometriosis-related pain and how it affects the patients’ life in general.
• Two health care systems were compared regarding these facts.

Key results

• The symptoms started at or shortly after menarche for most of the women and the mean period for consulting a doctor was 2 years.
• The time that was spent between consulting a clinician and getting a diagnosis was 8,5 years on average.  
• The pain was reported to be increasing gradually from the onset with each period.
• The characteristics of pain reported by women were categorized as sensory, evaluative, affective, location, fluctuation, and metaphors.
• The largest category comprised evaluative words and metaphors for extreme pain.
• The time perception was seen to be altered by the intensity of pain.
• The French health system was found to be offering easier access to specialists than the Australian system.

Limitations

• The women were all educated and able to participate in a long interview over the internet in English, all indicating the socio-economic status of the sample.
• The ages of the sample varied making some of the problems historical experiences.

Lay Summary

It is difficult to describe the feeling of pain, one of the most important symptoms of endometriosis because it is subjective. Endometriosis-related pain is proven to be underestimated by some clinicians resulting in the patient getting a late diagnosis. It has a significant impact on the quality of life of the patients. Women try to express their pain in different ways and it is crucial for clinicians to recognize this pain and act on it. There is little data about the way how women communicate their pain in the literature and how different health systems contribute to this fact.

Researchers from Australia conducted a qualitative interview study in which they explored the different experiences that women with endometriosis faced while describing their pain. The study included 13 participants from France and 13 participants from Australia, also comparing the role of the healthcare systems in place. It was published in the March 2022 issue of the journal Frontiers in Global Women’s Health.

The participants were recruited through social media and organizational channels, aged between 18-65, and had a definitive diagnosis of endometriosis either by laparoscopy or imaging. It was seen that symptoms started at or shortly after menarche for most of the women and the mean period for consulting a doctor was 2 years which was relatively short when compared to the time that was spent between consulting a clinician and getting a diagnosis which was 8,5 years on average.  

Most women described their pain increasing gradually with each period. They were mostly discounted by their family members who told them that it was all normal. Some realized their pain was abnormal when they compared it with their friends. Authors report that peer-to-peer education through social media helps provide patients with information about the disease. The characteristics of pain reported by women were categorized and the largest category comprised evaluative words and metaphors for extreme pain. The time perception was seen to be altered by the intensity of pain. It was also recognized that the French health system which provides easier access to specialists results in quicker attention to the patients’ symptoms than the Australian system.

Another important result was that none of the patients were given a pain scale by their clinicians during their consultations. The authors recommend that it is important for clinicians to monitor the patients’ pain using standardized tools and evaluate the effects on the patients’ quality of life.

Research Source: https://pubmed.ncbi.nlm.nih.gov/35400132/