From the Editor

Why are there delays in the diagnosis of endometriosis?

As leaders in women’s health care, we can do much more to improve the timely diagnosis of endometriosis in women with pelvic pain

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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.

Diagnosing endometriosis relies on identifying flags on physical exam

Physical examination findings that raise the likelihood that the patient has endometriosis include:

  • fixed and retroverted uterus
  • adnexal mass
  • lesions of the cervix or posterior fornix that visually appear to be endometriosis
  • uterosacral ligament abnormalities, including tenderness, thickening, and/or nodularity14,15
  • lateral displacement of the cervix (FIGURE 2)16,17
  • severe cervical stenosis.
Illustration: Marcia Hartsock for OBG Management
Lateral displacement of the cervix, which can be documented by visual examination of the cervix on speculum examination or by digital examination, is probably caused by the asymmetric involvement of one uterosacral ligament by endometriosis, causing one ligament to shorten and pull the cervix to that side of the body.

In one study of 57 women with a surgical diagnosis of endometriosis, uterosacral ligament abnormalities, lateral displacement of the cervix, and cervical stenosis were observed in 47%, 28%, and 19% of the women, respectively.17 In this same study 22 women had none of these findings, but 8 had a complex ovarian mass consistent with endometriosis.

The possibility of endometriosis increases as the number of history and physical examination findings suggestive of endometriosis increase.

Related article:
Endometriosis and pain: Expert answers to 6 questions targeting your management options

When transvaginal ultrasound can aid diagnosis

Most women with endometriosis have normal transvaginal ultrasonography (TVUS) results because ultrasound cannot detect small isolated peritoneal lesions of endometriosis present in Stage I disease, the most common stage of endometriosis. However, ultrasound is useful in detecting both ovarian endometriomas and nodules of deep infiltrating endometriosis (DIE).18 TVUS has excellent sensitivity (>90%) and specificity (>90%) for the detection of ovarian endometriomas because these cysts have characteristic, homogenous, low-level internal echoes.19,20 For the diagnosis of DIE of the uterosacral ligaments and rectovaginal septum, TVUS has fair sensitivity (>50%) and excellent specificity (>90%).21 In most studies, magnetic resonance imaging performs no better than TVUS for imaging ovarian endometriomas and DIE. Hence, TVUS is the preferred imaging modality for detecting endometriosis.22

Key points for primary care physicians and patients
  • Endometriosis is a common gynecologic disease. Approximately 8% of women of reproductive age have the condition.
  • Many patients report lengthy delays between the onset of symptoms of pelvic pain and the diagnosis of endometriosis.
  • Both patients and clinicians contribute to the delay in the diagnosis of endometriosis: Women are often reluctant to report the severity of their pelvic pain symptoms, and clinicians often under-respond to a patient's report of severe pelvic pain symptoms.
  • First-line therapy for the treatment of moderate to severe dysmenorrhea is nonsteroidal anti-inflammatory drugs and estrogen−progestin contraceptives.
  • Increasing vigilance for endometriosis will shorten the time between onset of symptoms and definitive diagnosis.
  • Reducing the time between the onset of symptoms and diagnosis of endometriosis will improve the quality of life of women with the disease because they will receive timely treatment.

This is a practice gap we can close

Clinicians take great pride in accurately solving patient problems in a timely and efficient manner. Substantial research indicates that we can improve the timeliness of our diagnosis of endometriosis. By acknowledging patients’ pain symptoms and recognizing the myriad symptoms and physical examination and imaging findings that are associated with endometriosis, we will close the gap and make this diagnosis with greater speed.

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