Suffering in Silence

Health professionals need to focus on early diagnosis of endometriosis, acknowledge coping strategies adopted by patients, and discuss the full range of treatment possibilities with patients.

Key Points

Highlights

• Women with endometriosis develop coping strategies over the challenges presented by their condition, which involve avoiding taking painkillers to enable them to stay alert when necessary, self-pacing to conserve energy, avoiding social events, changing work patterns, and hiding symptoms from colleagues, friends, family.
• Health professionals need to focus on early diagnosis of endometriosis, acknowledge coping strategies adopted by patients, and discuss the full range of possibilities for treatment with patients.

Importance

• Both quantitative and qualitative studies have established that endometriosis has a negative impact on multiple domains of quality of life, however qualitative studies using open-ended online questionnaires as the method of data collection are lacking. This study is one of few to explore women’s experiences of endometriosis and its impact on their lives and relationships, using open-ended online questionnaires.

What’s Done Here

• Thirty-four English-speaking women who reported that they had medically diagnosed endometriosis were recruited through a U.K.-based national endometriosis charity.
• Participants were asked to complete a series of open-ended questions anonymously through an online questionnaire, providing detailed insight into their experiences.

Key Results

• Thematic analysis revealed five themes, two of which had two sub-themes each, evidenced across the participant group:
• The themes and sub-themes were:
  • Theme 1: a constant struggle with pain and fatigue
  • Theme 2: the ‘battle’ for an accurate diagnosis:  Delays in referral & Poor support following the diagnosis
  • Theme 3: self-pacing to conserve energy: Avoiding social events & Managing negative impacts on work
  • Theme 4: avoiding painkillers to retain alertness
  • Theme 5: hiding symptoms for fear of negative judgment

Limitations of the Study

• Participants were mainly white, limiting the generalizability of the results.
• Women were accessed through one endometriosis website which may have restricted scope of experiences expressed, including severity of symptoms and proactiveness in healthcare.

Lay Summary

Although quantitative and qualitative studies have established that endometriosis has a negative impact on multiple domains of quality of life, the majority of qualitative studies to date have used focus groups and interviews. These data collection methods may limit disclosure of experiences due to face-to-face interaction with a researcher. Conversely, open-ended online questionnaires allow space and time to expand answers and offer anonymity. This study, conducted by researchers at Manchester Metropolitan University in the United Kingdom, is one of few to explore women’s experiences of endometriosis and its impact on their lives and relationships, using open-ended online questionnaires.

After conducting open-ended online questionnaires, the researchers used thematic analysis to analyze the data, which revealed five themes. Theme 1, a constant struggle with pain and fatigue, arose from participants’ emphasis on pain. As a result, the researchers report that “pain is the key negative experience reported by women with endometriosis”.

The majority of women also expressed delayed diagnosis which engendered Theme 2, the ‘battle’ for an accurate diagnosis. Women stated losing faith in health professionals as their symptoms were not taken seriously and were angry because their diagnosis had been delayed for so long. Under this theme, participates additionally stated that they experienced poor support following diagnosis. Some of them were presented with their diagnosis while in recovery following laparoscopic surgery, when they were drowsy and alone, which was described as a “rushed, lonely and cold experience”. Physicians and other health professionals were described as lacking sufficient information on diagnosis which led to many women conducting their own research and becoming experts in endometriosis themselves.

Theme 3, self-pacing to conserve energy resulted from many women expressing that they avoided social events and managed negative impacts on work.  Avoiding social events led many participants to feel socially isolated, and negative impacts on work were managed through recovering from symptoms during holidays and weekends and avoiding work when symptoms were particularly bad.

The questionnaires also revealed that women struggled to stay alert when taking pain medication and that they sometimes had to avoid work because they would not be sufficiently alert to work whilst taking pain medication. This led to Theme 4, avoiding painkillers to retain alertness.

Finally, Theme 5, hiding symptoms for fear of negative judgment was informed through reports of women concealing their symptoms from friends, family, and work colleagues due to lack of empathy and understanding.

The authors report that the results of this study are in line with other qualitative and quantitative research. They state how the themes reveal how women with endometriosis develop coping strategies over the challenges presented by their condition. These involve avoiding taking painkillers to enable them to stay alert when necessary, self-pacing to conserve energy, avoiding social events, changing work patterns, and hiding symptoms from colleagues, friends, and family.

In conclusion, the researchers state the importance of early diagnosis and that it is “crucial that general practitioners and other health professionals are trained to be able to differentiate endometriosis from other kinds of pain, and also to take women’s symptoms seriously at referral”. They also acknowledge the importance of discussing “the full range of possibilities for treatment, in addition to painkillers, as well as possible strategies for communicating honestly with friends and family about their condition, when designing treatment programs for women with endometriosis”.

Research Source: https://www.ncbi.nlm.nih.gov/pubmed/30306810