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CRM Blog: Fertility Journey

Endometriosis: A Life-Changing Disease

September 15, 2014
By Dr. Randall Loy

Could you have endometriosis? Do you have pelvic pain or are you experiencing difficulty in achieving pregnancy? If so, do not delay in seeking medical attention and go to a specialist who is well-versed in comprehensive endometriosis management. Carefully document your symptoms (e.g., pain location, quality, timing, activities affected, things that make the pain better or worse…) and take a log of your symptoms charted during the course of a menstrual cycle. Also provide your physician a descriptive narrative of how your life is being affected by your symptoms.

Endometriosis is a chronic disease state that affects approximately 10-12% of women of reproductive age throughout the world. Almost half of women with infertility have endometriosis and common symptoms include pain with menstrual periods and/or intercourse, fatigue, heavy menstrual bleeding and daily pelvic pain. Various clinical studies have shown that endometriosis is a pervasive disease and affects all aspects of women’s quality of life and especially with respect to pain and psycho-social functioning. A 2013 systematic review of 42 studies on the social and psychological impact endometriosis which was funded by the UK Economic and Social Research Council [Hum. Reprod. Update (2013)doi: 10.1093/humupd/dmt027] found delays between symptom onset and diagnosis, uncertainty about the course of the disease after diagnosis, significant impact on quality of life and activities such as employment, energy, vitality, socializing, as well as physical and sexual functioning. In addition, to increased rates of anxiety, depression and emotional distress, there was a sense of loss of control over one’s life while dealing with chronic pain. Other feelings which were common among endometriosis sufferers were worry, isolation, guilt, helplessness, hopelessness and the inability to cope.

This excellent review by Lorraine Culley and colleagues also highlighted some of the limitations in the materials and methods applied in the 23 quantitative, 16 qualitative and 3 mixed studies included in the analysis. No two studies were exactly alike with respect to methodology making comparisons difficult and resulting in serious information gaps in the literature. There exists a compelling need to study both the interventions of treatment and the ongoing support techniques for affected women and their families.

In a corroborative study just published from Monash University in the Journal of Family Planning and Reproductive Health Care (2014; DOI: 10.1136/jfprhc-2013-100853). Lead author, Kate Young and collaborators found that women commonly experienced delays in diagnosis and were more likely to be diagnosed sooner if reporting infertility rather than menstrual issues. Delays were both patient- and physician-related. The study noted that women were often dissatisfied, frustrated and angry with the experiences with their physicians and had concerns regarding the effectiveness and side effects of prescribed medical and surgical treatments. As with the first study cited above, authors concluded that further research is necessary to better understand endometriosis among women of diverse cultural and ethnic backgrounds.

Effective treatments are available for endometriosis, so do not delay seeking help from a specialist just because a well-intentioned friend or family member, or even a medical professional told you that “pain with periods is normal” or that “pain with sex is common” or that “just relax and you’ll get pregnant.” Endometriosis is a pervasive, even life-altering disease; therefore, be proactive and take control and, if you are suspicious, find out if you have it and what the best treatment and support options are.

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