Why are there delays in the diagnosis of endometriosis?
Endometriosis is a common gynecologic problem in adolescents and women. It often presents with pelvic pain, an ovarian endometrioma, and/or subfertility. In a prospective study of 116,678 nurses, the incidence of a new surgical diagnosis of endometriosis was greatest among women aged 25 to 29 years and lowest among women older than age 44.1 Using the incidence data from this study, the calculated prevalence of endometriosis in this large cohort of women of reproductive age was approximately 8%.
Although endometriosis is known to be a very common gynecologic problem, many studies report that there can be long delays between onset of pelvic pain symptoms and the diagnosis of endometriosis (Figure 1).2−6 Combining the results from 5 studies, involving 1,187 women, the mean age of onset of pelvic pain symptoms was 22.1 years, and the mean age at the diagnosis of endometriosis was 30.7 years. This is a difference of 8.6 years between the age of symptom onset and age at diagnosis.2−6
What factors contribute to the diagnosis delay?
Both patient and physician factors contribute to the reported lengthy delay between symptom onset and endometriosis diagnosis.7,8 Differentiating dysmenorrhea due to primary and secondary causes is difficult for both patients and physicians. Women may conceal the severity of menstrual pain to avoid both the embarrassment of drawing attention to themselves and being stigmatized as unable to cope. Most disappointing is that many women with endometriosis reported that they asked their clinician if endometriosis could be the cause of their severe dysmenorrhea and were told, “No.”7,8
Of interest, the reported delay in the diagnosis of endometriosis is much shorter for women who pre-sent with infertility than for women who present with pelvic pain. In one study from the United States, the delay to diagnosis was 3.13 years for women who presented with infertility and 6.35 years for women who presented with severe pelvic pain.3 This suggests that clinicians and patients more rapidly pursue the diagnosis of endometriosis in women with infertility, but not pelvic pain.
Related article:
Endometriosis: Expert answers to 7 crucial questions on diagnosis
Initial treatment of pelvic pain with NSAIDs and estrogen—progestin contraceptives
Many women with undiagnosed endometriosis present with pelvic pain symptoms including moderate to severe dysmenorrhea. These women are often empirically treated with nonsteroidal anti-inflammatory drugs (NSAIDs) and combination estrogen−progestin contraceptives in either a cyclic or continuous manner.9,10 Since many women with endometriosis will have a reduction in their pelvic pain with NSAID and contraceptive treatment, diagnosis of their endometriosis may be delayed until their disease progresses years after their initial presentation. It is important to gently alert these women to the possibility that they have undiagnosed endometriosis as the cause of their pain symptoms and encourage them to report any worsening pain symptoms in a timely manner.
Sometimes women with pelvic pain are treated with NSAIDs and contraceptives but no significant reduction in pain symptoms occurs. For these women, speedy consideration should be given to offering a laparoscopy to determine the cause of their pain.
Related article:
Avoiding “shotgun” treatment: New thoughts on endometriosis-associated pelvic pain
Diagnosing endometriosis relies on identifying flags in the patient’s history
The gold standard for endometriosis diagnosis is surgical visualization of endometriosis lesions, most often with laparoscopy, plus histologic confirmation of endometriosis on a tissue biopsy.9,10 A key to reducing the time between onset of symptoms and diagnosis of endometriosis is identifying adolescents and women who are at high risk for having the disease. These women should be offered a laparoscopy procedure. In women with moderate to severe pelvic pain of at least 6 months duration, medical history, physical examination, and imaging studies can be helpful in identifying those at increased risk for endometriosis.
Items from the patient history that might raise the likelihood of endometriosis include:
- abdominopelvic pain, dysmenorrhea, menorrhagia, subfertility, dyspareunia and/or postcoital bleeding11
- symptoms of dysmenorrhea and/or dyspareunia that are not responsive to NSAIDs or estrogen−progestin contraceptives12
- symptoms of dysmenorrhea and/or dyspareunia associated with absenteeism from school or work13
- multiple visits to the emergency department for severe dysmenorrhea
- endometriosis in the patient’s mother or sister
- subfertility with regular ovulation, patent fallopian tubes, and a partner with a normal semen analysis
- urinary frequency, urgency, and/or pain on urination
- diarrhea, constipation, nausea, dyschezia, bowel cramping, abdominal distention, and early satiety.
A daunting clinical challenge is that symptoms of endometriosis overlap with other gynecologic and nongynecologic problems including pelvic infection, adhesions, ovarian cysts, fibroids, irritable bowel syndrome, inflammatory bowel disease, interstitial cystitis, myofascial pain, depression, and history of sexual abuse.
