There are at least five and a half million women with endometriosis and pelvic pain in North America. To date, there are no large scale studies on the direct impact this condition has on the psychological and emotional well being of this group of women but it is quite apparent that this disease directly affects relationships, careers, physical activity and emotional well-being. In a practice setting, it is paramount that these issues are acknowledged and addressed. In addition to the burden of pain, many women are unsupported and feel minimized as well as compromised in their social, personal and professional lives.

Recent surveys done by the Endometriosis Association on four thousand women with confirmed endometriosis indicate there is a significant lag between the time the first symptoms present and the diagnosis is finally confirmed. On average, there’s a period of approximately ten years before a women finds out she has endometriosis. There is a significant period of time that a woman goes undiagnosed and untreated, yet suffers with pain, cramps and fatigue. The medical communities often fail to help the patient recognize the problem and the patient may be left with no answers. Women soon begin to feel abandoned while friends and family begin to wonder about the validity of her symptoms and if her complaints are real.
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This lack of medical confirmation and acknowledgment often cultivates the concept that the pain and fatigue may be "all in her head." Women often end up feeling deserted by the medical community and isolated by their families and loved ones. It is not unusual for some women to learn to deny their symptoms and inadvertently fall into the stereotypical role that pain and suffering is how it is supposed to be. It is incredible the number of women who report that their pain is no big deal and yet, find amazing ways to accommodate the disease in their lives. When one explores and questions them about their activities of daily living, it not unusual to find out that their personal and physical lifestyle has been greatly compromised. Many are unable to exercise regularly or participate in extra activities with their families. It is not unusual to hear reports that they are just getting by with the day to day tasks of living.

Reviewing available literature demonstrates that there is a strong association between chronic pain and depression. A recent published study by Stanford Researchers assessed the prevalence of chronic pain as a predictor of depression morbidity. Of 18,980 randomly selected people surveyed, 43.4% of them had one chronic painful physical condition, and 4% of those respondents had a major depression disorder. Those with any one type of pain were four times more likely to have depression. Few women recognize this and little is done to treat and help them. Families often do not recognize the depression and they feel helpless as well. Some members may begin to believe that their loved one is inventing the pain, even more so when the medical community indicates they can find nothing wrong.

It is obvious that this condition bears an emotional toll on ones personal life, especially prime relationships. Sexual intimacy is almost impossible for women with this disease and 64.9% report they have painful intercourse either during or after relations. Fatigue is the second most common symptom, therefore energy reserves are minimal and little resources are available for social and personal relationships. Studies support the fact that divorce is more common amongst couples living with chronic illness.

Through years of pain and suffering, many begin to develop low self esteem. Some start to believe their problems really are in their head. Self doubt is pervasive and is obvious at the time of surgery. Probably more than 80% express that their biggest fear is not the surgery but the fear that nothing will be found by the surgeon.

Those with continued, chronic and disabling pain also face the challenge of proper pain management, with little understanding and support of the medical community and their families. When they are prescribed narcotics to control the pain in order to function and carry on with their responsibilities, they fear they will be judged and are afraid they will become addicted, even though the incidence is rare and less than 2%.
In addition to the emotional toll, the economic impact is imposing as well.

Eighty percent of women with endometriosis report that they are unable to carry on normal work responsibilities. Recent studies indicate approximately 57% of women with this condition are incapacitated one to two days a month. On a yearly basis, this is approximately a month of lost work time. For many, this probably equals lost wages since the average worker has five to 10 sick days per year. This does not include the time that needs to be taken off work for diagnostic procedures, doctor visits or surgery and recovery.

Included with lost wages is the added burden of medical expenses. Rising premiums, co-payments, and deductibles are becoming prohibitive. Insurance premiums in the last year have quadrupled the rate of inflation, and many women that suffer with a chronic condition are self-insured. Out of pocket expenses for drugs have also increased and for those that have no drug coverage, prescribed medications are very costly. Morphine per year costs $1,400 and the new nonsteroidal anti-inflammatory medications used to control pain are not typically covered by insurance and cost about $2.80 each pill which is equal to $900 per year.

Women who are diagnosed with endometriosis suffer on several fronts. Not only do they face issues of pain and fatigue, they often face psychological and emotional stressors. In addition there are financial and professional compromises. Medical providers need to acknowledge these challenges and empower and advocate for women with the diagnosis. A holistic approach to treatment is imperative to good care, patients deserve nothing less. It is the way women should be treated.

Updated October 10, 2006

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