Endometriosis and Psychological Health: Butterflies from Deep Wounds

Endometriosis and Psychological Health: Butterflies from Deep Wounds

This Italian study focuses on the individual factors associated with endometriosis that can adversely impact psychological health.

Key Points


  • The authors of this study research and discuss the effects of endometriosis on psychological health. This study is different from others because it specifically focuses on the impact of individual factors.
  • The title “Free butterflies will come out of these deep wounds” pays homage to Alda Merini, an Italian poet. Merini's quote also summarizes the authors’ goal of this study. In other words, they hope that the results of this study will allow women to escape from the psychological prison they sent to because of endometriosis.


  • The effects of endometriosis are far reaching. Women with the disease already suffer from the physical, emotional, and mental pain associated with the disease. Research studies, like the one delineated here, aim to understand the effects better and subsequently reduce the burden.

What’s done here?

  • The study consisted of 74 women with a surgical diagnosis of endometriosis.
  • During the interview, the women were asked to delineate their experiences with the illness. The transcripts of the interviews were later subject to analysis to identify categories/themes.
  • All participants had to be assessed by the Italian Hospital Anxiety and Depression Scale (HADS), a questionnaire that helps determine psychological health. The results of this test were used to split the participants up into two groups: distressed or non-distressed.

Key results:

  • The following were considered commonalities experienced by an individual living with endometriosis:
    • Pain – Women and their peers often normalize this grief; this leads the woman to ignore the pain or placate it using home remedies.
    • Living with a chronic illness - Most women take a while to come to terms with the nature of the disease. The two specific areas of concern are intimacy and quality of everyday life.
    • Infertility – A good proportion of women with this disease are faced with the prospect of infertility during their reproductive years.
    • Need for specialized/multi-disciplinary care - Since endometriosis can affect different parts of the body, many women transition from a general care center to a skilled care center. At the end of the shift, most women feel better because the doctor is more equipped to treat them.
  • The central theory to this paper is experiencing disruption versus restoring continuity. Experiencing disruption refers to any nuisances caused the illness itself. Restoring continuity is the notion that individuals inflicted with this disease can come to terms with their disease and can also integrate it into their life history. The study ultimately identified six factors that impact the theory above and subsequently a patient’s psychological wellness.
    • Pathway to diagnosis – Many women feel distressed by the long and often confusing path from symptom onset to diagnosis. Some women said that unpleasant encounters with doctors often marred this route. On the other hand, women who were not distressed often had a short way towards the diagnosis.
      • Communication of diagnosis – Doctor-patient interactions mostly predict whether or not an individual will feel distressed because of a diagnosis.
    • Doctor-patient relationship – Women with the disease that did not have a good relationship with their doctors were more distressed. Additionally, women who were not distressed because of the quality of their doctor-patient relationship often backed clinical trials tied to the disease.
    • Current symptoms – Distressed participants typically suffered from symptom-associated pain and were not able to address or control that pain.
    • Support – Most distressed women who suffer from endometriosis feel like they are on this journey alone.
      • Intimate relationships – Non-distressed women tended to have a better, more trusting relationship with their partner.
      • Financial support – Treatment costs can be high and can also be a source of distress for those suffering from this illness.
    • Female identity – often distressed women suffering from endometriosis have low self-esteem and self-value.
      • Infertility – The threat of infertility that is associated with this disease can be a source of distress for many. The women that were not distressed had come to terms with their situation.
      • Body Image – The overwhelming majority of participants struggled with body image, which was mainly impacted by the symptoms and treatments associated with this disease.
      • Sexuality – Distressed women lose interest in sex due to loss of libido and sexual dysfunction.
      • Meaning of life – Those who were distressed felt as though this disease defined their entire existence.

Limitations of the study:

  • This study was “culturally homogenous” meaning that the participants were from one geographic area. This could limit one’s ability to generalize the results of the survey to a global population.

Lay Summary

Endometriosis is a grueling disease in every sense of the word; however, most of the discussions center on the physical manifestations of the disease. Facchin et al. veer from the beaten path and examine the impact endometriosis have on a women’s psychological health. The authors believe that their study differs from others of its kind because it examines the individual differences. In other words, what factors associated with endometriosis can impact a woman’s psychological well-being? This study has recently been published as “Free butterflies will come out of these deep wounds": A grounded theory of how endometriosis affects women's psychological health” in the Journal of Health Psychology.

The researchers recruited 74 women with endometriosis for this study. The Hospital Anxiety and Depression Scale was administered to gauge psychological health. The participants were then divided into two categories: distressed and non-distressed. The researchers also interviewed the women. The results of these interviews were analyzed through coding.

The results of this study discuss topics concerned with day to day living such as experiencing pain, the chronic nature of the illness, impact on everyday life, infertility, and need for specialized/multi-disciplinary care. The authors then delineate the psychological health effects of this disease by talking about a pathway to diagnosis, communication, the doctor-patient relationship, current symptomology, peer support, intimate relationships, financial assistance, female identity, infertility impact, body image, sexuality, and perception changes when it comes to the meaning of life. 

Overall, this study concentrated on the disruptive nature of the disease. The researchers believe that this disruption can often lead to distress. The authors of this study talk about restoring continuity, which is this notion that individuals inflicted with this disease can come to terms with their illness and can also integrate it into their life history. The results of this study also show that most of the participants felt as though their experiences with endometriosis were normalized/trivialized by others. This reaction indicates a lack of support from peers, which can often lead to distress. Indubitably, endometriosis can be psychologically challenging illness; however, this study pinpoints specific areas that can be targeted to make the entire experience a less distressing ordeal.

Research Source: https://www.ncbi.nlm.nih.gov/pubmed/28810386

Psychological Health distress anxiety daily life infertility symptoms support doctor-patient relationship sexuality diagnosis body image


EndoNews highlights the latest peer-reviewed scientific research and medical literature that focuses on endometriosis. We are unbiased in our summaries of recently-published endometriosis research. EndoNews does not provide medical advice or opinions on the best form of treatment. We highly stress the importance of not using EndoNews as a substitute for seeking an experienced physician.