The diagnostic delay
Unfortunately, many women with endometriosis experience problems for many years before a diagnosis is made. Studies show an average of five to eight years from the time a girl/woman notices the first symptoms of endometriosis until she is diagnosed. This delay can have serious consequences for the woman, as the disease and symptoms can develop and worsen in the period without treatment.
A large Danish study has found a correlation between diagnostic delay and workability of women with endometriosis. The study showed that a longer diagnostic delay was associated with lower workability later in life. In addition to high personal costs for the woman, the diagnostic delay also has high socio-economic costs.
Part of the reason for the diagnostic delay lies with the girl or woman herself because there is a smooth transition from normal menstrual pain to what is pathological. As a result, there is a kind of habituation with the belief that this is probably how menstruation should feel like. The pain is perceived as normal for a period and the woman waits to go see the general practitioner.
For the general practitioner, the challenge is that menstrual pain is common, even in women without endometriosis, and that many other symptoms of endometriosis are also found in other conditions such as irritable bowel syndrome. As a result, many women with endometriosis repeatedly visit their general practitioners and other healthcare professionals, and some women are misdiagnosed at least once before their endometriosis is diagnosed.
During the years that often pass before the final diagnosis is made, the symptoms may be "psychologized" by the woman herself, but also by the doctor and others, as if it is something that only happens "inside the head".
This means that many women with abdominal pain due to endometriosis feel stigmatized and perceived as hypochondriacs, all of which contribute to prolonging the time from symptom onset to diagnosis.
