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SILENT SUFFERERS:
 During the first phase of the UGAP pain, which typically lasts for three months to one year, most patients do complain of pain and seek medical advice. The majority of physicians are in the dark about this condition. When physicians cannot make a definite diagnosis, they keep on ordering tests—sometimes very expensive ones. They request endoscopies, laparoscopies, and even surgeries. When pain progresses to the chronic phase and remains undiagnosed, patients tend to withdraw and, essentially, become “silent sufferers.” Self-esteem is impaired and the ability to enjoy life is limited.
There are several reasons for this behavior. Some patients endure pain for a long time because they are frustrated by the lack of knowledge physicians have about this condition. These patients are further discouraged by the reluctance of physicians to spend time with them, sometimes even labeling such patients as “malingers.” Some sufferers are reluctant or embarrassed to talk about affected parts of the body such as the genitals and rectum. For some, especially women, a stigma is associated with dyspareunia (painful sex). A woman may suffer for years without telling her husband. She will not even mention the problem to her gynecologist during routine check-ups, thinking that it is normal to have pain during intercourse.
Some sufferers don’t mention their pain to physicians, fearing that the final diagnosis will be a serious condition such as cancer. Considering these factors, it is not surprising that many patients feel isolated to the point of becoming reclusive and living lonely, disengaged lives. Our challenge is to get them “out of the closet” and help them.
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