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Chronic pelvic pain in the community—Symptoms, investigations, and diagnoses
Chronic pelvic pain in the community—Symptoms, investigations, and diagnoses Krina T. Zondervan, DPhil,a, d Patricia L. Yudkin, DPhil,b Martin P. Vessey, MD,a Crispin P. Jenkinson, DPhil,c Martin G. Dawes, MD,b David H. Barlow, MD,d and Stephen H. Kennedy, MDd Oxford, United Kingdom OBJECTIVES: This study was undertaken to investigate the overlap between chronic pelvic pain, dysmenorrhea, dyspareunia, irritable bowel syndrome, and genitourinary symptoms in the community and also to examine associated investigations and diagnoses. STUDY DESIGN: A postal questionnaire was used to survey 3916 women aged 18 through 49 randomly selected from the Oxfordshire Health Authority Register. The number of responders was 2304 (74% of 3106 questionnaire recipients). Chronic pelvic pain was described as recurrent or constant pelvic pain of ≥6 months’ duration unrelated to periods, intercourse, or pregnancy. Case patients (n = 483) were subgrouped as follows: (1) chronic pelvic pain only, (2) chronic pelvic pain and irritable bowel syndrome, (3) chronic pelvic pain and genitourinary symptoms, and (4) chronic pelvic pain, genitourinary symptoms, and irritable bowel syndrome. RESULTS: Half the women with chronic pelvic pain also had either genitourinary symptoms or irritable bowel syndrome, or both. Prevalences of dysmenorrhea and dyspareunia were higher among women with chronic pelvic pain (81% and 41%, respectively) than among women without chronic pelvic pain (58% and 14%, respectively); rates did not differ among the chronic pelvic pain subgroups. Irritable bowel syndrome and stress were the most common diagnoses received by patients with chronic pelvic pain, but 50% had never received a diagnosis. CONCLUSIONS: There is substantial overlap between chronic pelvic pain and other abdominal symptoms in the community. Despite a high prevalence of chronic pelvic pain, many women have never had the condition diagnosed. (Am J Obstet Gynecol 2001;184:1149-55.)
Key words: Chronic pelvic pain, community survey, diagnosis, genitourinary symptoms, irritable bowel syndrome Chronic pelvic pain is an enigmatic condition that can have a large impact on life. It is usually described as lower abdominal pain unrelated to pregnancy that has lasted for ≥6 months. Pain that occurs exclusively around menstruation (dysmenorrhea) or with sexual intercourse (dyspareunia) is excluded from the definition. We recently provided the first evidence that chronic pelvic pain is common in the United Kingdom primary care setting and in the community as a whole. The annual prevalence of chronic pelvic pain in the primary care setting among women aged 15 to 73 (38/1000) was found to From the Department of Public Health,a the Department of Primary Health Care,b and the Health Services Research Unit,c Institute of Health Sciences, and the Nuffield Department of Obstetrics and Gynecology,d University of Oxford. Supported by the BUPA Foundation, United Kingdom (registered charity No. 277598). Received for publication June 9, 2000; revised August 10, 2000; accepted November 9, 2000. Reprint requests: Krina T. Zondervan, MD, Department of Public Health, Institute of Health Sciences, Old Rd, Headington, Oxford, United Kingdom OX3 7LF. Copyright © 2001 by Mosby, Inc. 0002-9378/2001 $35.00 + 0 6/1/112904 doi:10.1067/mob.2001.112904
be comparable to the prevalences of asthma (37/1000) and back pain (41/1000).1 In a postal questionnaire survey of a random sample of women aged 18 to 49 years in the general population (the Oxfordshire Women’s Health Study), we found a 3-month prevalence of chronic pelvic pain as high as 24%.2 The only other reported figures have been 15% in a similar community-based study in the United States3 and 20% for pelvic pain of >1 year’s duration among patients and their female companions in waiting rooms of gynecology and family medicine practices.4 We found that women with chronic pelvic pain varied substantially with respect to the degree to which they were affected by the symptoms but shared a high rate of anxiety about the potential causes of these symptoms. Chronic pelvic pain is notoriously difficult to diagnose and treat,5 mainly because of the wide range of possible causes with overlapping symptoms.6 The main gynecologic diagnoses include endometriosis, chronic pelvic inflammatory disease, and adhesions. The most common gastrointestinal diagnosis is irritable bowel syndrome.7 Possible genitourinary diagnoses include interstitial cystitis and the urethral syndrome.8 High irritable bowel syndrome prevalence rates (50%-79%) have been reported among women 1149
1150 Zondervan et al
referred to gynecologic clinics for chronic pelvic pain,9 and high prevalence rates of dyspareunia (42%) and urinary symptoms (61%) have been reported among patients with irritable bowel syndrome.10 Community-based data on the overlap between chronic pelvic pain and other abdominal symptoms, however, remain limited.11 This article describes further results from the Oxfordshire Women’s Health Study. The aim was to investigate the symptom overlap of chronic pelvic pain, irritable bowel syndrome, genitourinary symptoms, dysmenorrhea, and dyspareunia in the community and to look at the associated investigations and diagnoses reported by the respondents. Methods Study design and response. The design and methods of the Oxfordshire Women’s Health Study have previously been described elsewhere.2 In short, the study was a postal questionnaire survey among 4000 women aged 18 to 49 years who were randomly selected from the Oxfordshire Health Authority register. This register includes all persons under the care of a general practitioner in the area covered by the Oxfordshire Health Authority. A semiquantitative questionnaire was developed to collect information on a wide range of issues related to women’s health (for a copy of the questionnaire, see http://www.medicine.ox.ac.uk/ndog/cppr/frame.html). The questionnaire was pilot tested and validated in groups of women with chronic pelvic pain, healthy volunteers, and a random sample of 200 women aged 18 to 49 years selected from the Oxfordshire Health Authority register. The 4000 women were registered with 85 general practices. One practice objected to participation by their patients, and these women (n = 73) were therefore excluded from the sample. Other exclusions were for mental illness (n = 6) and participation in the pilot study (n = 5). Of the 3916 questionnaires sent, 318 were returned undelivered and a further 492 were sent to women who did not live at the Oxfordshire Health Authority address of record according to the updated electoral roll or directory inquiries. Completed questionnaires were returned by 2304 women (74% of 3106 questionnaire recipients). The responders were comparable to the general Oxfordshire population in terms of age and social class distributions. Study group and definitions. The objective of the study was to investigate pelvic pain unrelated to pregnancy. Women who had been pregnant in the previous 12 months (n = 259) were therefore excluded. A further 29 women were excluded because of missing data on pelvic pain, which left a study group of 2016 women. The following definitions were used in the analyses. Dysmenorrhea was considered to be pelvic pain during or shortly before or after menstrual periods. Dyspareunia was considered to be pelvic pain during or in the 24 hours after
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sexual intercourse. Chronic pelvic pain was considered to be constant or intermittent pelvic pain of ≥6 months’ duration, not exclusively associated with menstrual periods or sexual intercourse. Irritable bowel syndrome was defined according to the internationally agreed Rome criteria.12 Genitourinary symptoms were considered to be frequency or urgency or stinging on passing urine on at least a quarter of occasions with associated chronic pelvic pain. A chronic pelvic pain case patient was a woman who reported chronic pelvic pain during the 3 months before the survey. Women with chronic pelvic pain were subcategorized into 4 groups as follows according to the presence of additional gastrointestinal or genitourinary symptoms: (1) chronic pelvic pain only, (2) chronic pelvic pain and irritable bowel syndrome, (3) chronic pelvic pain and genitourinary symptoms, and (4) chronic pelvic pain, irritable bowel syndrome, and genitourinary symptoms. The prevalence of dysmenorrhea was calculated as a proportion by dividing the number of women who reported dysmenorrhea during the previous 3 months by the number of women who had menstrual periods. The prevalence of dyspareunia was calculated as a proportion by dividing the number of women who reported pain during or after sexual intercourse during the previous 3 months by the number of sexually active women. Data on investigations undergone during the patient’s lifetime and diagnoses received from a general practitioner or specialist by a woman with chronic pelvic pain were based on self-report only. These data were not validated by external sources. Measures of pain severity and frequency. Cumulative duration of pelvic pain (in hours) during the previous 12 months was calculated for each case patient with chronic pelvic pain by multiplying the reported average duration of a chronic pelvic pain episode by the number of episodes. Chronic pelvic pain, dysmenorrhea, and dyspareunia were assessed for typical severity according to a categoric scale (none, mild, moderate, or severe)13 and a 10-cm visual analog scale from “least possible pain” to “worst possible pain.” 14 Frequencies of dysmenorrhea and dyspareunia were expressed as occasionally (fewer than a quarter of the times), often (a quarter to half), and usually or always (more than half of the times). Statistical methods. Comparisons between proportions were made with the χ2 test and comparisons between means were made with the t test and analysis of variance. For continuous variables that were not normally distributed, non parametric testing produced virtually identical results. Analyses were performed with SPSS-PC version 10.0 (SPSS Inc, Chicago, Ill) software. Results Chronic pelvic pain, irritable bowel syndrome, and genitourinary symptoms. Among the study group of 2016 women, 483 (24%) reported chronic pelvic pain during
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Table I. Characteristics of women with chronic pelvic pain according to presence of irritable bowel syndrome and genitourinary symptoms All Chronic chronic pelvic pelvic pain pain (n = 483) only (n = 249) Age (y, mean ± SD) 35.4 ± 8.6 First onset of pain (No.) 6 mo–1 y earlier 92 (19.0%) >1-5 y earlier 151 (31.3%) >5 y earlier 159 (32.9%) Unable to recall year of onset 81 (16.8%) Typical chronic pelvic pain severity Moderate or severe (No.) 246 (50.9%) Visual analog scale score (mean ± SD) 4.2 ± 2.6 Cumulative pain duration in last 12 mo 52 (4-336) (h,† median and interquartile range)
Chronic Chronic pelvic pain, Chronic pelvic pain pelvic pain irritable bowel syndrome, and irritable bowel and genitourinary and genitourinary syndrome (n = 114) symptoms (n = 44) symptoms (n = 72)
36.1 ± 8.5
34.4 ± 8.1
35.4 ± 9.9
34.4 ± 8.9
43 (17.3%) 81 (32.5%) 74 (29.7%) 51 (20.5%)
18 (15.8%) 39 (34.2%) 41 (36.0%) 16 (14.0%)
13 (29.5%) 14 (31.8%) 14 (31.8%) 3 (6.8%)
18 (25.4%) 16 (22.5%) 27 (38.0%) 10 (14.1%)
106 (42.6%) 3.8 ± 2.6 52 (4-156)
66 (57.9%) 4.3 ± 2.5 52 (4-260)
21 (47.7%) 3.9 ± 2.6 104 (4-387)
51 (70.8%)* 5.4 ± 2.3* 104 (52-1392)*
Women with missing values for irritable bowel syndrome or genitourinary symptoms (n = 4) were excluded from the subgroups. *P < .001, statistical comparisons among 4 subgroups of women with chronic pelvic pain (3 degrees of freedom). †Calculated as the average duration of a chronic pelvic pain episode in the last 12 months times the number of episodes during that period.
the previous 3 months. The mean (±SD) age of women with chronic pelvic pain (35.4 ± 8.6 years) was not significantly different from that of those without chronic pelvic pain (34.8 ± 9.0 years; P = .1). The groups did not differ in terms of either social class distribution, marital status, or employment status. The proportion of white women was slightly higher among the women with chronic pelvic pain (98.3%) than among those without chronic pelvic pain (95.3%; P = .003). Four women with chronic pelvic pain had missing values for genitourinary symptoms or irritable bowel syndrome. Of the remaining 479 women, 38.5% (95% confidence interval, 34.2%-42.8%) had irritable bowel syndrome and 24.2% (95% confidence interval, 20.4%28.1%) had genitourinary symptoms (most commonly, frequency and urgency). Numbers in the 4 symptom groups (see Methods section) were 249 women with chronic pelvic pain only, 114 with chronic pelvic pain and irritable bowel syndrome, 44 with chronic pelvic pain and genitourinary symptoms, and 72 with chronic pelvic pain, irritable bowel syndrome, and genitourinary symptoms. Among all women with chronic pelvic pain, most (81%) reported that the pain had first started >1 year previously, with a third stating that it had started >5 years previously (Table I). In a comparison of the 4 symptom groups, women with chronic pelvic pain, irritable bowel syndrome, and genitourinary symptoms had the highest percentage of reports of moderate or severe chronic pelvic pain. They also reported the longest mean cumulative duration of chronic pelvic pain during the previous year. Chronic pelvic pain, dysmenorrhea, and dyspareunia. Among all women with chronic pelvic pain who had menstrual periods, 81% reported dysmenorrhea, versus 58% among the 817 women without chronic pelvic pain (Table II). Most women with dysmenorrhea had it usually or always
with menstrual periods. Women with chronic pelvic pain reported a slightly greater frequency and severity of dysmenorrhea than did women without chronic pelvic pain. The prevalence and frequency of dysmenorrhea did not differ significantly among the symptom subgroups of chronic pelvic pain. The typical severity reported by women with chronic pelvic pain only was less than that reported by those with additional genitourinary symptoms or irritable bowel syndrome. Among women with chronic pelvic pain who were sexually active, 41% reported dyspareunia in the previous 3 months, versus 14% of women without chronic pelvic pain (Table III). Most women with dyspareunia reported that it occurred only occasionally. Moreover, most reported deep pain (with or without superficial pain) and pain both during and after sexual intercourse (data not shown). A quarter of all women with dyspareunia reported having sexual intercourse less frequently because of pain. No significant differences in dyspareunia prevalence were found among the chronic pelvic pain subgroups, but the severity of dyspareunia appeared greatest among the women with chronic pelvic pain, irritable bowel syndrome, and genitourinary symptoms. The proportion who reported having sexual intercourse less frequently because of the pain also varied significantly, from 22% among women with chronic pelvic pain only to 53% among women with chronic pelvic pain, genitourinary symptoms, and irritable bowel syndrome (P < .01). Investigations and diagnoses for chronic pelvic pain. Among all women with chronic pelvic pain, 34% reported that they had undergone at least one investigation for the pain (Table IV). This proportion varied from 30% among women with chronic pelvic pain only to 48% among those with additional genitourinary symptoms and irritable bowel syndrome (P < .05).
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Table II. Prevalence, frequency, and severity of dysmenorrhea among menstruating women according to presence of chronic pelvic pain, genitourinary symptoms, and irritable bowel syndrome No chronic pelvic pain (n = 1533) Overall prevalence of dysmenorrhea (No.) Frequency of dysmenorrhea (No.) Occasionally Often Usually or always Typical severity of dysmenorrhea Moderate or severe (No.) Visual analog scale score (mean ± SD)
All Chronic chronic pelvic pelvic pain pain (n = 483) only (n = 249)
Chronic Chronic pelvic pain, Chronic pelvic pain pelvic pain irritable bowel syndrome, and irritable bowel and genitourinary and genitourinary syndrome (n = 114) symptoms (n = 44) symptoms (n = 72)
817/1404 (58.2%)
364/451 (80.7%)*
193/239 (80.8%)
88/111 (79.3%)
28/37 (75.7%)
53/60 (88.3%)
257 (32.0%) 158 (19.7%) 389 (48.4%)
86 (23.8%)† 69 (19.1%) 207 (57.2%)
50 (26.2%) 40 (20.9%) 101 (52.9%)
21 (23.9%) 17 (19.3%) 50 (56.8%)
2 (7.1%) 6 (21.4%) 20 (71.4%)
11 (20.8%) 6 (11.3%) 36 (67.9%)
507 (63.0%)
261 (72.3%)†
122 (63.9%)
69 (78.4%)
24 (88.9%)
45 (84.9%)‡
4.6 ± 2.5
5.1 ± 2.5†
4.7 ± 2.6
5.3 ± 2.2
6.4 ± 2.3
5.9 ± 2.3§
Women with missing values for irritable bowel syndrome or genitourinary symptoms (n = 4) were excluded from the subgroups. Numbers do not always add up to the total because of missing values. *P < .001, statistical comparisons between women with and women without chronic pelvic pain (1 degree of freedom). †P < .01, statistical comparisons between women with and women without chronic pelvic pain (1 degree of freedom). ‡P < .01, statistical comparisons among 4 subgroups of women with chronic pelvic pain (3 degrees of freedom). §P < .001, statistical comparisons among 4 subgroups of women with chronic pelvic pain (3 degrees of freedom).
Table III. Prevalence, frequency, and severity of dyspareunia among sexually active women according to presence of chronic pelvic pain, genitourinary symptoms, and irritable bowel syndrome No chronic pelvic pain (n = 1533) Prevalence of dyspareunia (No.) Frequency of dyspareunia (No.) Occasionally Often Usually or always Typical severity during sexual intercourse‡ Moderate or severe (No.) Visual analog scale score (mean ± SD) Typical severity after sexual intercoursell Moderate or severe (No.) Visual analog scale score (mean ± SD) Decrease in frequency of sexual intercourse because of pain (No.)
All Chronic chronic pelvic pelvic pain pain (n = 483) only (n = 249)
Chronic Chronic pelvic pain, Chronic pelvic pain pelvic pain irritable bowel syndrome, and irritable bowel and genitourinary and genitourinary syndrome (n = 114) symptoms (n = 44) symptoms (n = 72)
186/1346 (13.8%)
178/432 (41.2%)*
78/218 (35.8%)
46/104 (44.2%)
20/42 (47.6%)
32/64 (50.0%)
133 (71.5%) 34 (18.3%) 19 (10.2%)
117 (65.7%)† 25 (14.0%) 36 (20.2%)
55 (70.5%) 10 (12.8%) 13 (16.7%)
27 (58.7%) 7 (15.2%) 12 (26.1%)
16 (80.0%) 1 (5.0%) 3 (15.0%)
` 17 (53.1%) 7 (21.9%) 8 (25.0%)
67 (45.0%)
79 (50.6%)
33 (50.0%)
20 (46.5%)
9 (50.0%)
16 (57.1%)
3.9 ± 2.4
4.0 ± 2.3
3.8 ± 2.2
43 (33.9%)
52 (40.9%)
19 (32.2%)
3.4 ± 2.0
3.8 ± 2.3
3.4 ± 2.3
186 (23.1%)
54 (30.3%)
17 (21.8%)
4.2 ± 2.2
12 (42.9%) 3.9 ± 2.4 15 (32.6%)
3.0 ± 1.7
6 (50.0%) 3.4 ± 2.3 5 (25.0%)
4.8 ± 2.5§
15 (55.6%) 4.6 ± 2.1 17 (53.1%)§
Women with missing values for irritable bowel syndrome or genitourinary symptoms (n = 4) were excluded from the subgroups. Numbers do not always add up to the total because of missing values. *P < .001, statistical comparisons between women with and women without chronic pelvic pain (1 degree of freedom). †P < .05, statistical comparisons between women with and women without chronic pelvic pain (1 degree of freedom). ‡Among women with pelvic pain during sexual intercourse (no chronic pelvic pain, n = 149; chronic pelvic pain, n = 156; total, n = 305). §P < .05, statistical comparisons among 4 subgroups of women with chronic pelvic pain (3 degrees of freedom). llAmong women with pelvic pain after sexual intercourse (no chronic pelvic pain, n = 127; chronic pelvic pain, n = 127; total, n = 254).
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Table IV. Self-reports of having ever undergone investigation for pelvic pain among women with chronic pelvic pain according to presence of genitourinary symptoms or irritable bowel syndrome All Chronic chronic pelvic pelvic pain pain (n = 475) only (n = 244)
Any investigation Ultrasonography Laparoscopy or laparotomy Sigmoidoscopy or colonoscopy Radiography Other†
Chronic Chronic pelvic pain, Chronic pelvic pain pelvic pain irritable bowel syndrome, and irritable bowel and genitourinary and genitourinary syndrome (n = 113) symptoms (n = 43) symptoms (n = 71)
No.
%
No.
%
No.
%
No.
%
No.
161 102 53 44 34 19
33.9 21.5 11.2 9.3 7.2 4.0
72 46 24 12 14 6
29.5 18.8 9.8 4.9 5.7 2.5
39 26 10 14 7 8
34.5 23.0 8.8 12.4 6.2 7.0
39 9 3 4 3 1
32.6 20.9 7.0 9.3 7.0 2.3
34 21 15 14 9 4
% 47.9* 29.6 21.1 19.7 12.7 5.6
Women with missing values for ever having undergone an investigation or having received a diagnosis (n = 8) were excluded; in the subgroups those with missing values for irritable bowel syndrome or genitourinary symptoms (n = 4) were also excluded. *P < .05, statistical comparisons among 4 subgroups of women with chronic pelvic pain (3 degrees of freedom). †Other investigations included cystoscopy, magnetic resonance imaging, blood tests, internal examinations, cervical swabs, barium meals, and urine samples.
Table V. Self-reports of diagnoses ever received by women with chronic pelvic pain from a general practitioner or specialist according to presence of genitourinary symptoms or irritable bowel syndrome All Chronic chronic pelvic pelvic pain pain (n = 475) only (n = 244)
Any diagnosis Type of diagnosis Irritable bowel syndrome Stress Ovarian cyst Endometriosis Cystitis Pelvic inflammatory disease Constipation Back pain or problems Uterine fibroids Adhesions Appendicitis Inflammatory bowel disease Other‡ No. of diagnoses received 0 1 2 3 >3
Chronic Chronic pelvic pain, Chronic pelvic pain pelvic pain irritable bowel syndrome, and irritable bowel and genitourinary and genitourinary syndrome (n = 113) symptoms (n = 43) symptoms (n = 71)
No.
%
No.
%
No.
%
No.
%
No.
%
237
49.9
108
44.3
58
51.3
22
51.2
47
66.2*
94 45 40 35 34 31 31 27 24 22 12 10 58
19.8† 9.5 8.4 7.4 7.2 6.5 6.5 5.7 5.1 4.6 2.5 2.1 12.2
27 18 20 16 11 13 7 11 8 9 5 6 35
11.1 7.4 8.2 6.6 4.5 5.3 2.9 4.5 3.3 3.7 2 2.5 14.3
37 8 9 10 5 10 11 4 7 4 3 1 9
32.7 7.1 8 8.8 4.4 8.8 9.7 3.5 6.2 3.5 2.7 0.9 8
5 5 3 1 8 2 1 1 2 2 3 0 6
11.6 11.6 7 2.3 18.6 4.7 2.3 2.3 4.7 4.7 7 0 1.4
24 14 8 8 9 6 12 11 7 6 1 3 8
33.8 19.7 11.3 11.3 12.7 8.5 16.9 15.5 9.9 8.5 1.4 4.2 11.3
238 111 60 38 28
50.1 23.4 12.6 8 5.9
136 58 27 16 7
55.7 23.8 11.1 6.6 2.9
55 25 12 13 8
48.7 22.1 10.6 11.5 7.1
21 10 7 4 1
48.8 23.3 16.3 9.3 2.3
24 18 12 5 12
33.8§ 25.4 16.9 7 16.9
Women with missing values for ever having undergone an investigation or having received a diagnosis (n = 8) were excluded; in the subgroups those with missing values for irritable bowel syndrome or genitourinary symptoms (n = 4) were also excluded. *P < .05, statistical comparisons among 4 subgroups of women with chronic pelvic pain (3 degrees of freedom). †Of the 94 women with a diagnosis of irritable bowel syndrome, 61 (65%) met the international Rome criteria11 for that diagnosis. ‡The most common other diagnoses reported by the women were ovulation (n = 15), uterine or vaginal prolapse (n = 7), pelvic congestion (n = 3), and retroverted uterus (n = 2). §P < .01, statistical comparisons among 4 subgroups of women with chronic pelvic pain (3 degrees of freedom).
Half of the women with chronic pelvic pain reported ever being given a diagnosis (Table V). Irritable bowel syndrome was the most common diagnosis among all women with chronic pelvic pain (20%) and in 3 of the 4 symptom subgroups. Among the women who had ever received a diagnosis of irritable bowel syndrome, 65% met
the Rome criteria11 for this diagnosis at the time of the survey. Stress was the second most common diagnosis overall (10%). More than one diagnosis was reported by 21% of women with chronic pelvic pain only, versus 41% of women with chronic pelvic pain, irritable bowel syndrome, and genitourinary symptoms (P < .01).
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Table VI. Self-reports of diagnoses ever received by women with chronic pelvic pain (n = 475) from a general practitioner or specialist according to whether an investigation had been made Never undergone investigation (n = 314)
Ever received diagnosis No Yes Type of diagnosis (among those with a diagnosis) Irritable bowel syndrome Stress Ovarian cyst Endometriosis Cystitis Pelvic inflammatory disease Constipation Back pain or problems Uterine fibroids Adhesions Appendicitis Inflammatory bowel disease Other No. of diagnoses (among those with a diagnosis) 1 2 3 >3
Ever undergone investigation (n = 161)
No.
%
No.
%
218 96
69.4 30.6
20 141
12.5 87.6
29 17 4 6 13 7 18 6 5 4 4 2 28
30.2 17.7 4.2 6.3 13.5 7.3 18.8 6.3 5.2 4.2 4.2 2.1 29.1
65 28 36 29 21 24 13 21 19 18 8 8 23
46.1 19.9 25.5 20.6 14.9 17.0 9.2 14.9 13.5 12.8 5.7 5.7 16.3
58 25 8 5
60.4 26.0 8.3 5.2
53 35 30 23
37.6 24.8 21.3 16.3
Women with missing values for ever having undergone an investigation or ever having received a diagnosis (n = 8) were excluded.
Among all women with chronic pelvic pain, 96 (20%) reported that they had never had any investigations but had received a diagnosis (Table VI). Among these women the most common diagnoses were irritable bowel syndrome (30%), constipation (19%), stress (18%), and cystitis (14%). Most had only received one diagnosis. Among women with a diagnosis who had undergone investigations irritable bowel syndrome remained the most common diagnosis (46%), followed by ovarian cysts (26%), endometriosis (21%), and stress (20%). Women with a diagnosis that could only be established through laparoscopy or laparotomy (eg, endometriosis or pelvic adhesions) had the highest frequency of these investigations (57% and 64%, respectively). Comment This study showed a substantial overlap between chronic pelvic pain, genitourinary symptoms, and irritable bowel syndrome in the community. Approximately half of the women with chronic pelvic pain had at least one additional symptom; 39% had irritable bowel syndrome and 24% had genitourinary symptoms. Prevalence rates of dysmenorrhea and dyspareunia were much higher among women with chronic pelvic pain (81% and 41%, respectively) than among those without chronic pelvic pain (58% and 14%, respectively). Moreover, these high prevalence rates were found for all subgroups of chronic pelvic pain, irrespective of the presence of additional genitourinary symptoms or irritable bowel syndrome.
Our findings are consistent with the limited data available from previous studies. Mathias et al3 reported an extremely high prevalence (82%) of dyspareunia among women with chronic pelvic pain in the general US community. Another (hospital-based) study in the United States of 651 women with chronic pelvic pain reported that 43% had also had dyspareunia, 39% had a history of excessive dysmenorrhea, and 79% met the criteria for probable irritable bowel syndrome.15 The results demonstrate the range of symptoms that a doctor is likely to encounter when assessing a patient with chronic pelvic pain, with the ensuing complexity of the diagnostic problems. This complexity was reflected by the wide range of received diagnoses reported by women with chronic pelvic pain, especially those with additional genitourinary symptoms and irritable bowel syndrome. Notably, the latter group was most affected in terms of chronic pelvic pain severity and episode duration and severity of dysmenorrhea and dyspareunia. Irritable bowel syndrome was by far the most common diagnosis received. Strikingly, the second most common diagnosis was stress. This supports findings from studies in clinical settings, where high frequencies of stress, depression, and anxiety observed among women with chronic pelvic pain have been interpreted as providing a direct explanation for the pain (especially in those cases in which no obvious pathologic explanation was found). This dualistic approach is increasingly being recognized as unhelpful.16 Indeed, a meta-analysis showed that these psychologic characteristics are linked to chronic pain
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states in general rather than specifically to chronic pelvic pain.17 Modern multidimensional pain models assume that the onset and persistence of chronic pain can be influenced by a combination of the following mechanisms6, 18: (1) chronic pathologic processes in somatic structures or viscera, (2) prolonged or permanent dysfunction of the peripheral or central nervous system, (3) psychologic mechanisms, and (4) socioenvironmental factors. However, half of all women with chronic pelvic pain in the community reported never having received a diagnosis from either a general practitioner or a specialist (most of these reported never having undergone investigations and may not have sought health care). A substantial proportion of women (20%) reported never having undergone investigations but nevertheless having received a diagnosis. The diagnoses reported most frequently by this group were irritable bowel syndrome, stress, constipation, and cystitis. A thorough assessment of these women might possibly have revealed an undiagnosed pathologic condition. It should be noted that the data on the diagnoses of the women in this study were based only on respondent recall and were not validated by information from general practitioners or specialists. However, the self-reported results are important because they at least represent women’s perceptions of diagnoses given for their symptoms. Women in our study appeared to report more diagnoses and a wider range of diagnoses than registered in computerized medical records in primary care for incident chronic pelvic pain cases during a 3.5-year follow-up period (most of those in the database had only one registered diagnosis).19 This difference is likely to be in part a result of the comparison between lifetime diagnoses and those given to a woman with chronic pelvic pain during a limited follow-up period shortly after her first visit to a general practitioner. Both analyses, however, are consistent in that the most frequently recorded diagnosis among women aged 18 to 50 years was irritable bowel syndrome. We believe our findings to be applicable to women with chronic pelvic pain in the general United Kingdom population. The Oxfordshire Women’s Health Study was a carefully designed cross-sectional survey with a high response rate (74%) that focused on women’s health in general to avoid bias related to selective response. Responders were similar to the general population in terms of age and social class distribution. There is no reason to believe that the women with chronic pelvic pain who responded to the survey were significantly different from nonresponders with chronic pelvic pain, although the possibility cannot be excluded. Despite a high prevalence of chronic pelvic pain in the United Kingdom community, many women continue to have the condition undiagnosed and an even larger number appear never to have investigations performed. Those
who do have the condition diagnosed often report having received more than one diagnosis. This is not surprising because of the substantial overlap in symptoms between chronic pelvic pain and other abdominal symptoms. This overlap, as well as the wide range of possible causes for chronic pelvic pain, provides further support for the requirement of multidisciplinary settings for effective assessment and management of chronic pelvic pain. We are grateful to all the women who participated in the Oxfordshire Women’s Health Study. We also thank Jean Bradlow and Valerie Messenger at the Oxfordshire Health Authority for providing the random sample of women and Cathy Kohler for performing the data entry. REFERENCES
1. Zondervan KT, Yudkin PL, Vessey MP, Dawes MG, Barlow DH, Kennedy SH. Prevalence and incidence in primary care of chronic pelvic pain in women: evidence from a national general practice database. BJOG 1999;106:1149-55. 2. Zondervan KT, Yudkin PL, Vessey MP, Dawes MG, Barlow DH, Kennedy SH. The community prevalence of chronic pelvic pain in women and associated illness behaviour. Br J Gen Pract. In press 2001. 3. Mathias SD, Kuppermann M, Liberman RF, Lipschutz RC, Steege JF. Chronic pelvic pain: prevalence, health-related quality of life, and economic correlates. Obstet Gynecol 1996;87:321-7. 4. Jamieson DJ, Steege JF. The prevalence of dysmenorrhea, dyspareunia, pelvic pain, and irritable bowel syndrome in primary care practices. Obstet Gynecol 1996;1:55-9. 5. Beard RW. Chronic pelvic pain. BJOG 1998;108:8-10. 6. Moore J, Kennedy SH. Causes of chronic pelvic pain. Baillieres Clin Obstet Gynaecol 2000;14:389-402. 7. Rapkin AJ, Mayer EA. Gastroenterologic causes of chronic pelvic pain. Obstet Gynecol Clin North Am 1993;20:663-83. 8. Summitt RL. Urogynecologic causes of chronic pelvic pain. Obstet Gynecol Clin North Am 1993;20:685-98. 9. Prior A, Wilson K, Whorwell PJ, Faragher EB. Irritable bowel syndrome in the gynecological clinic: survey of 798 new referrals. Dig Dis Sci 1989;34:1820-4. 10. Whorwell PJ, McCallum M, Creed FH, Roberts CT. Non-colonic features of irritable bowel syndrome. Gut 1986;27:37-40. 11. Zondervan KT, Yudkin PL, Vessey MP, Dawes MG, Barlow DH, Kennedy SH. The prevalence of chronic pelvic pain in women in the United Kingdom: a systematic review. BJOG 1998;105:93-9. 12. Thompson WG, Creed FH, Drossman DA, Heaton KW, Mazzacca G. Functional bowel disease and functional abdominal pain. Gastroenterol Int 1992;5:75-91. 13. Ohnhaus EE, Adler R. Methodological problems in the measurement of pain: a comparison between the verbal rating scale and the visual analogue scale. Pain 1975;1:379-84. 14. Wallenstein SL, Heidrich G, Kaiko R, Houde RW. Clinical evaluation of mild analgesics: the measurement of clinical pain. Br J Clin Pharmacol 1980;10 Suppl 2:319S-27S. 15. Walker EA, Katon WJ, Jemelka R, Alfrey H, Bowers M, Stenchever MA. The prevalence of chronic pelvic pain and irritable bowel syndrome in two university clinics. J Psychosom Obstet Gynaecol 1991;12:65-75. 16. Grace VM. Pitfalls of the medical paradigm in chronic pelvic pain. Baillieres Clin Obstet Gynaecol 2000;14:525-39. 17. McGowan LP, Clark-Carter DD, Pitts MK. Chronic pelvic pain: a meta-analytic review. Psychol Health 1998;13:937-51. 18. Howard FM. The role of laparoscopy in chronic pelvic pain: promise and pitfalls. Obstet Gynecol Surv 1993;48:357-87. 19. Zondervan KT, Yudkin PL, Vessey MP, Dawes MG, Barlow DH, Kennedy SH. Patterns of diagnosis and referral in women consulting for chronic pelvic pain in UK primary care. BJOG 1999;106:1156-61.
Key words: Chronic pelvic pain, community survey, diagnosis, genitourinary symptoms, irritable bowel syndrome Chronic pelvic pain is an enigmatic condition that can have a large impact on life. It is usually described as lower abdominal pain unrelated to pregnancy that has lasted for ≥6 months. Pain that occurs exclusively around menstruation (dysmenorrhea) or with sexual intercourse (dyspareunia) is excluded from the definition. We recently provided the first evidence that chronic pelvic pain is common in the United Kingdom primary care setting and in the community as a whole. The annual prevalence of chronic pelvic pain in the primary care setting among women aged 15 to 73 (38/1000) was found to From the Department of Public Health,a the Department of Primary Health Care,b and the Health Services Research Unit,c Institute of Health Sciences, and the Nuffield Department of Obstetrics and Gynecology,d University of Oxford. Supported by the BUPA Foundation, United Kingdom (registered charity No. 277598). Received for publication June 9, 2000; revised August 10, 2000; accepted November 9, 2000. Reprint requests: Krina T. Zondervan, MD, Department of Public Health, Institute of Health Sciences, Old Rd, Headington, Oxford, United Kingdom OX3 7LF. Copyright © 2001 by Mosby, Inc. 0002-9378/2001 $35.00 + 0 6/1/112904 doi:10.1067/mob.2001.112904
be comparable to the prevalences of asthma (37/1000) and back pain (41/1000).1 In a postal questionnaire survey of a random sample of women aged 18 to 49 years in the general population (the Oxfordshire Women’s Health Study), we found a 3-month prevalence of chronic pelvic pain as high as 24%.2 The only other reported figures have been 15% in a similar community-based study in the United States3 and 20% for pelvic pain of >1 year’s duration among patients and their female companions in waiting rooms of gynecology and family medicine practices.4 We found that women with chronic pelvic pain varied substantially with respect to the degree to which they were affected by the symptoms but shared a high rate of anxiety about the potential causes of these symptoms. Chronic pelvic pain is notoriously difficult to diagnose and treat,5 mainly because of the wide range of possible causes with overlapping symptoms.6 The main gynecologic diagnoses include endometriosis, chronic pelvic inflammatory disease, and adhesions. The most common gastrointestinal diagnosis is irritable bowel syndrome.7 Possible genitourinary diagnoses include interstitial cystitis and the urethral syndrome.8 High irritable bowel syndrome prevalence rates (50%-79%) have been reported among women 1149
1150 Zondervan et al
referred to gynecologic clinics for chronic pelvic pain,9 and high prevalence rates of dyspareunia (42%) and urinary symptoms (61%) have been reported among patients with irritable bowel syndrome.10 Community-based data on the overlap between chronic pelvic pain and other abdominal symptoms, however, remain limited.11 This article describes further results from the Oxfordshire Women’s Health Study. The aim was to investigate the symptom overlap of chronic pelvic pain, irritable bowel syndrome, genitourinary symptoms, dysmenorrhea, and dyspareunia in the community and to look at the associated investigations and diagnoses reported by the respondents. Methods Study design and response. The design and methods of the Oxfordshire Women’s Health Study have previously been described elsewhere.2 In short, the study was a postal questionnaire survey among 4000 women aged 18 to 49 years who were randomly selected from the Oxfordshire Health Authority register. This register includes all persons under the care of a general practitioner in the area covered by the Oxfordshire Health Authority. A semiquantitative questionnaire was developed to collect information on a wide range of issues related to women’s health (for a copy of the questionnaire, see http://www.medicine.ox.ac.uk/ndog/cppr/frame.html). The questionnaire was pilot tested and validated in groups of women with chronic pelvic pain, healthy volunteers, and a random sample of 200 women aged 18 to 49 years selected from the Oxfordshire Health Authority register. The 4000 women were registered with 85 general practices. One practice objected to participation by their patients, and these women (n = 73) were therefore excluded from the sample. Other exclusions were for mental illness (n = 6) and participation in the pilot study (n = 5). Of the 3916 questionnaires sent, 318 were returned undelivered and a further 492 were sent to women who did not live at the Oxfordshire Health Authority address of record according to the updated electoral roll or directory inquiries. Completed questionnaires were returned by 2304 women (74% of 3106 questionnaire recipients). The responders were comparable to the general Oxfordshire population in terms of age and social class distributions. Study group and definitions. The objective of the study was to investigate pelvic pain unrelated to pregnancy. Women who had been pregnant in the previous 12 months (n = 259) were therefore excluded. A further 29 women were excluded because of missing data on pelvic pain, which left a study group of 2016 women. The following definitions were used in the analyses. Dysmenorrhea was considered to be pelvic pain during or shortly before or after menstrual periods. Dyspareunia was considered to be pelvic pain during or in the 24 hours after
May 2001 Am J Obstet Gynecol
sexual intercourse. Chronic pelvic pain was considered to be constant or intermittent pelvic pain of ≥6 months’ duration, not exclusively associated with menstrual periods or sexual intercourse. Irritable bowel syndrome was defined according to the internationally agreed Rome criteria.12 Genitourinary symptoms were considered to be frequency or urgency or stinging on passing urine on at least a quarter of occasions with associated chronic pelvic pain. A chronic pelvic pain case patient was a woman who reported chronic pelvic pain during the 3 months before the survey. Women with chronic pelvic pain were subcategorized into 4 groups as follows according to the presence of additional gastrointestinal or genitourinary symptoms: (1) chronic pelvic pain only, (2) chronic pelvic pain and irritable bowel syndrome, (3) chronic pelvic pain and genitourinary symptoms, and (4) chronic pelvic pain, irritable bowel syndrome, and genitourinary symptoms. The prevalence of dysmenorrhea was calculated as a proportion by dividing the number of women who reported dysmenorrhea during the previous 3 months by the number of women who had menstrual periods. The prevalence of dyspareunia was calculated as a proportion by dividing the number of women who reported pain during or after sexual intercourse during the previous 3 months by the number of sexually active women. Data on investigations undergone during the patient’s lifetime and diagnoses received from a general practitioner or specialist by a woman with chronic pelvic pain were based on self-report only. These data were not validated by external sources. Measures of pain severity and frequency. Cumulative duration of pelvic pain (in hours) during the previous 12 months was calculated for each case patient with chronic pelvic pain by multiplying the reported average duration of a chronic pelvic pain episode by the number of episodes. Chronic pelvic pain, dysmenorrhea, and dyspareunia were assessed for typical severity according to a categoric scale (none, mild, moderate, or severe)13 and a 10-cm visual analog scale from “least possible pain” to “worst possible pain.” 14 Frequencies of dysmenorrhea and dyspareunia were expressed as occasionally (fewer than a quarter of the times), often (a quarter to half), and usually or always (more than half of the times). Statistical methods. Comparisons between proportions were made with the χ2 test and comparisons between means were made with the t test and analysis of variance. For continuous variables that were not normally distributed, non parametric testing produced virtually identical results. Analyses were performed with SPSS-PC version 10.0 (SPSS Inc, Chicago, Ill) software. Results Chronic pelvic pain, irritable bowel syndrome, and genitourinary symptoms. Among the study group of 2016 women, 483 (24%) reported chronic pelvic pain during
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Table I. Characteristics of women with chronic pelvic pain according to presence of irritable bowel syndrome and genitourinary symptoms All Chronic chronic pelvic pelvic pain pain (n = 483) only (n = 249) Age (y, mean ± SD) 35.4 ± 8.6 First onset of pain (No.) 6 mo–1 y earlier 92 (19.0%) >1-5 y earlier 151 (31.3%) >5 y earlier 159 (32.9%) Unable to recall year of onset 81 (16.8%) Typical chronic pelvic pain severity Moderate or severe (No.) 246 (50.9%) Visual analog scale score (mean ± SD) 4.2 ± 2.6 Cumulative pain duration in last 12 mo 52 (4-336) (h,† median and interquartile range)
Chronic Chronic pelvic pain, Chronic pelvic pain pelvic pain irritable bowel syndrome, and irritable bowel and genitourinary and genitourinary syndrome (n = 114) symptoms (n = 44) symptoms (n = 72)
36.1 ± 8.5
34.4 ± 8.1
35.4 ± 9.9
34.4 ± 8.9
43 (17.3%) 81 (32.5%) 74 (29.7%) 51 (20.5%)
18 (15.8%) 39 (34.2%) 41 (36.0%) 16 (14.0%)
13 (29.5%) 14 (31.8%) 14 (31.8%) 3 (6.8%)
18 (25.4%) 16 (22.5%) 27 (38.0%) 10 (14.1%)
106 (42.6%) 3.8 ± 2.6 52 (4-156)
66 (57.9%) 4.3 ± 2.5 52 (4-260)
21 (47.7%) 3.9 ± 2.6 104 (4-387)
51 (70.8%)* 5.4 ± 2.3* 104 (52-1392)*
Women with missing values for irritable bowel syndrome or genitourinary symptoms (n = 4) were excluded from the subgroups. *P < .001, statistical comparisons among 4 subgroups of women with chronic pelvic pain (3 degrees of freedom). †Calculated as the average duration of a chronic pelvic pain episode in the last 12 months times the number of episodes during that period.
the previous 3 months. The mean (±SD) age of women with chronic pelvic pain (35.4 ± 8.6 years) was not significantly different from that of those without chronic pelvic pain (34.8 ± 9.0 years; P = .1). The groups did not differ in terms of either social class distribution, marital status, or employment status. The proportion of white women was slightly higher among the women with chronic pelvic pain (98.3%) than among those without chronic pelvic pain (95.3%; P = .003). Four women with chronic pelvic pain had missing values for genitourinary symptoms or irritable bowel syndrome. Of the remaining 479 women, 38.5% (95% confidence interval, 34.2%-42.8%) had irritable bowel syndrome and 24.2% (95% confidence interval, 20.4%28.1%) had genitourinary symptoms (most commonly, frequency and urgency). Numbers in the 4 symptom groups (see Methods section) were 249 women with chronic pelvic pain only, 114 with chronic pelvic pain and irritable bowel syndrome, 44 with chronic pelvic pain and genitourinary symptoms, and 72 with chronic pelvic pain, irritable bowel syndrome, and genitourinary symptoms. Among all women with chronic pelvic pain, most (81%) reported that the pain had first started >1 year previously, with a third stating that it had started >5 years previously (Table I). In a comparison of the 4 symptom groups, women with chronic pelvic pain, irritable bowel syndrome, and genitourinary symptoms had the highest percentage of reports of moderate or severe chronic pelvic pain. They also reported the longest mean cumulative duration of chronic pelvic pain during the previous year. Chronic pelvic pain, dysmenorrhea, and dyspareunia. Among all women with chronic pelvic pain who had menstrual periods, 81% reported dysmenorrhea, versus 58% among the 817 women without chronic pelvic pain (Table II). Most women with dysmenorrhea had it usually or always
with menstrual periods. Women with chronic pelvic pain reported a slightly greater frequency and severity of dysmenorrhea than did women without chronic pelvic pain. The prevalence and frequency of dysmenorrhea did not differ significantly among the symptom subgroups of chronic pelvic pain. The typical severity reported by women with chronic pelvic pain only was less than that reported by those with additional genitourinary symptoms or irritable bowel syndrome. Among women with chronic pelvic pain who were sexually active, 41% reported dyspareunia in the previous 3 months, versus 14% of women without chronic pelvic pain (Table III). Most women with dyspareunia reported that it occurred only occasionally. Moreover, most reported deep pain (with or without superficial pain) and pain both during and after sexual intercourse (data not shown). A quarter of all women with dyspareunia reported having sexual intercourse less frequently because of pain. No significant differences in dyspareunia prevalence were found among the chronic pelvic pain subgroups, but the severity of dyspareunia appeared greatest among the women with chronic pelvic pain, irritable bowel syndrome, and genitourinary symptoms. The proportion who reported having sexual intercourse less frequently because of the pain also varied significantly, from 22% among women with chronic pelvic pain only to 53% among women with chronic pelvic pain, genitourinary symptoms, and irritable bowel syndrome (P < .01). Investigations and diagnoses for chronic pelvic pain. Among all women with chronic pelvic pain, 34% reported that they had undergone at least one investigation for the pain (Table IV). This proportion varied from 30% among women with chronic pelvic pain only to 48% among those with additional genitourinary symptoms and irritable bowel syndrome (P < .05).
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Table II. Prevalence, frequency, and severity of dysmenorrhea among menstruating women according to presence of chronic pelvic pain, genitourinary symptoms, and irritable bowel syndrome No chronic pelvic pain (n = 1533) Overall prevalence of dysmenorrhea (No.) Frequency of dysmenorrhea (No.) Occasionally Often Usually or always Typical severity of dysmenorrhea Moderate or severe (No.) Visual analog scale score (mean ± SD)
All Chronic chronic pelvic pelvic pain pain (n = 483) only (n = 249)
Chronic Chronic pelvic pain, Chronic pelvic pain pelvic pain irritable bowel syndrome, and irritable bowel and genitourinary and genitourinary syndrome (n = 114) symptoms (n = 44) symptoms (n = 72)
817/1404 (58.2%)
364/451 (80.7%)*
193/239 (80.8%)
88/111 (79.3%)
28/37 (75.7%)
53/60 (88.3%)
257 (32.0%) 158 (19.7%) 389 (48.4%)
86 (23.8%)† 69 (19.1%) 207 (57.2%)
50 (26.2%) 40 (20.9%) 101 (52.9%)
21 (23.9%) 17 (19.3%) 50 (56.8%)
2 (7.1%) 6 (21.4%) 20 (71.4%)
11 (20.8%) 6 (11.3%) 36 (67.9%)
507 (63.0%)
261 (72.3%)†
122 (63.9%)
69 (78.4%)
24 (88.9%)
45 (84.9%)‡
4.6 ± 2.5
5.1 ± 2.5†
4.7 ± 2.6
5.3 ± 2.2
6.4 ± 2.3
5.9 ± 2.3§
Women with missing values for irritable bowel syndrome or genitourinary symptoms (n = 4) were excluded from the subgroups. Numbers do not always add up to the total because of missing values. *P < .001, statistical comparisons between women with and women without chronic pelvic pain (1 degree of freedom). †P < .01, statistical comparisons between women with and women without chronic pelvic pain (1 degree of freedom). ‡P < .01, statistical comparisons among 4 subgroups of women with chronic pelvic pain (3 degrees of freedom). §P < .001, statistical comparisons among 4 subgroups of women with chronic pelvic pain (3 degrees of freedom).
Table III. Prevalence, frequency, and severity of dyspareunia among sexually active women according to presence of chronic pelvic pain, genitourinary symptoms, and irritable bowel syndrome No chronic pelvic pain (n = 1533) Prevalence of dyspareunia (No.) Frequency of dyspareunia (No.) Occasionally Often Usually or always Typical severity during sexual intercourse‡ Moderate or severe (No.) Visual analog scale score (mean ± SD) Typical severity after sexual intercoursell Moderate or severe (No.) Visual analog scale score (mean ± SD) Decrease in frequency of sexual intercourse because of pain (No.)
All Chronic chronic pelvic pelvic pain pain (n = 483) only (n = 249)
Chronic Chronic pelvic pain, Chronic pelvic pain pelvic pain irritable bowel syndrome, and irritable bowel and genitourinary and genitourinary syndrome (n = 114) symptoms (n = 44) symptoms (n = 72)
186/1346 (13.8%)
178/432 (41.2%)*
78/218 (35.8%)
46/104 (44.2%)
20/42 (47.6%)
32/64 (50.0%)
133 (71.5%) 34 (18.3%) 19 (10.2%)
117 (65.7%)† 25 (14.0%) 36 (20.2%)
55 (70.5%) 10 (12.8%) 13 (16.7%)
27 (58.7%) 7 (15.2%) 12 (26.1%)
16 (80.0%) 1 (5.0%) 3 (15.0%)
` 17 (53.1%) 7 (21.9%) 8 (25.0%)
67 (45.0%)
79 (50.6%)
33 (50.0%)
20 (46.5%)
9 (50.0%)
16 (57.1%)
3.9 ± 2.4
4.0 ± 2.3
3.8 ± 2.2
43 (33.9%)
52 (40.9%)
19 (32.2%)
3.4 ± 2.0
3.8 ± 2.3
3.4 ± 2.3
186 (23.1%)
54 (30.3%)
17 (21.8%)
4.2 ± 2.2
12 (42.9%) 3.9 ± 2.4 15 (32.6%)
3.0 ± 1.7
6 (50.0%) 3.4 ± 2.3 5 (25.0%)
4.8 ± 2.5§
15 (55.6%) 4.6 ± 2.1 17 (53.1%)§
Women with missing values for irritable bowel syndrome or genitourinary symptoms (n = 4) were excluded from the subgroups. Numbers do not always add up to the total because of missing values. *P < .001, statistical comparisons between women with and women without chronic pelvic pain (1 degree of freedom). †P < .05, statistical comparisons between women with and women without chronic pelvic pain (1 degree of freedom). ‡Among women with pelvic pain during sexual intercourse (no chronic pelvic pain, n = 149; chronic pelvic pain, n = 156; total, n = 305). §P < .05, statistical comparisons among 4 subgroups of women with chronic pelvic pain (3 degrees of freedom). llAmong women with pelvic pain after sexual intercourse (no chronic pelvic pain, n = 127; chronic pelvic pain, n = 127; total, n = 254).
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Table IV. Self-reports of having ever undergone investigation for pelvic pain among women with chronic pelvic pain according to presence of genitourinary symptoms or irritable bowel syndrome All Chronic chronic pelvic pelvic pain pain (n = 475) only (n = 244)
Any investigation Ultrasonography Laparoscopy or laparotomy Sigmoidoscopy or colonoscopy Radiography Other†
Chronic Chronic pelvic pain, Chronic pelvic pain pelvic pain irritable bowel syndrome, and irritable bowel and genitourinary and genitourinary syndrome (n = 113) symptoms (n = 43) symptoms (n = 71)
No.
%
No.
%
No.
%
No.
%
No.
161 102 53 44 34 19
33.9 21.5 11.2 9.3 7.2 4.0
72 46 24 12 14 6
29.5 18.8 9.8 4.9 5.7 2.5
39 26 10 14 7 8
34.5 23.0 8.8 12.4 6.2 7.0
39 9 3 4 3 1
32.6 20.9 7.0 9.3 7.0 2.3
34 21 15 14 9 4
% 47.9* 29.6 21.1 19.7 12.7 5.6
Women with missing values for ever having undergone an investigation or having received a diagnosis (n = 8) were excluded; in the subgroups those with missing values for irritable bowel syndrome or genitourinary symptoms (n = 4) were also excluded. *P < .05, statistical comparisons among 4 subgroups of women with chronic pelvic pain (3 degrees of freedom). †Other investigations included cystoscopy, magnetic resonance imaging, blood tests, internal examinations, cervical swabs, barium meals, and urine samples.
Table V. Self-reports of diagnoses ever received by women with chronic pelvic pain from a general practitioner or specialist according to presence of genitourinary symptoms or irritable bowel syndrome All Chronic chronic pelvic pelvic pain pain (n = 475) only (n = 244)
Any diagnosis Type of diagnosis Irritable bowel syndrome Stress Ovarian cyst Endometriosis Cystitis Pelvic inflammatory disease Constipation Back pain or problems Uterine fibroids Adhesions Appendicitis Inflammatory bowel disease Other‡ No. of diagnoses received 0 1 2 3 >3
Chronic Chronic pelvic pain, Chronic pelvic pain pelvic pain irritable bowel syndrome, and irritable bowel and genitourinary and genitourinary syndrome (n = 113) symptoms (n = 43) symptoms (n = 71)
No.
%
No.
%
No.
%
No.
%
No.
%
237
49.9
108
44.3
58
51.3
22
51.2
47
66.2*
94 45 40 35 34 31 31 27 24 22 12 10 58
19.8† 9.5 8.4 7.4 7.2 6.5 6.5 5.7 5.1 4.6 2.5 2.1 12.2
27 18 20 16 11 13 7 11 8 9 5 6 35
11.1 7.4 8.2 6.6 4.5 5.3 2.9 4.5 3.3 3.7 2 2.5 14.3
37 8 9 10 5 10 11 4 7 4 3 1 9
32.7 7.1 8 8.8 4.4 8.8 9.7 3.5 6.2 3.5 2.7 0.9 8
5 5 3 1 8 2 1 1 2 2 3 0 6
11.6 11.6 7 2.3 18.6 4.7 2.3 2.3 4.7 4.7 7 0 1.4
24 14 8 8 9 6 12 11 7 6 1 3 8
33.8 19.7 11.3 11.3 12.7 8.5 16.9 15.5 9.9 8.5 1.4 4.2 11.3
238 111 60 38 28
50.1 23.4 12.6 8 5.9
136 58 27 16 7
55.7 23.8 11.1 6.6 2.9
55 25 12 13 8
48.7 22.1 10.6 11.5 7.1
21 10 7 4 1
48.8 23.3 16.3 9.3 2.3
24 18 12 5 12
33.8§ 25.4 16.9 7 16.9
Women with missing values for ever having undergone an investigation or having received a diagnosis (n = 8) were excluded; in the subgroups those with missing values for irritable bowel syndrome or genitourinary symptoms (n = 4) were also excluded. *P < .05, statistical comparisons among 4 subgroups of women with chronic pelvic pain (3 degrees of freedom). †Of the 94 women with a diagnosis of irritable bowel syndrome, 61 (65%) met the international Rome criteria11 for that diagnosis. ‡The most common other diagnoses reported by the women were ovulation (n = 15), uterine or vaginal prolapse (n = 7), pelvic congestion (n = 3), and retroverted uterus (n = 2). §P < .01, statistical comparisons among 4 subgroups of women with chronic pelvic pain (3 degrees of freedom).
Half of the women with chronic pelvic pain reported ever being given a diagnosis (Table V). Irritable bowel syndrome was the most common diagnosis among all women with chronic pelvic pain (20%) and in 3 of the 4 symptom subgroups. Among the women who had ever received a diagnosis of irritable bowel syndrome, 65% met
the Rome criteria11 for this diagnosis at the time of the survey. Stress was the second most common diagnosis overall (10%). More than one diagnosis was reported by 21% of women with chronic pelvic pain only, versus 41% of women with chronic pelvic pain, irritable bowel syndrome, and genitourinary symptoms (P < .01).
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Table VI. Self-reports of diagnoses ever received by women with chronic pelvic pain (n = 475) from a general practitioner or specialist according to whether an investigation had been made Never undergone investigation (n = 314)
Ever received diagnosis No Yes Type of diagnosis (among those with a diagnosis) Irritable bowel syndrome Stress Ovarian cyst Endometriosis Cystitis Pelvic inflammatory disease Constipation Back pain or problems Uterine fibroids Adhesions Appendicitis Inflammatory bowel disease Other No. of diagnoses (among those with a diagnosis) 1 2 3 >3
Ever undergone investigation (n = 161)
No.
%
No.
%
218 96
69.4 30.6
20 141
12.5 87.6
29 17 4 6 13 7 18 6 5 4 4 2 28
30.2 17.7 4.2 6.3 13.5 7.3 18.8 6.3 5.2 4.2 4.2 2.1 29.1
65 28 36 29 21 24 13 21 19 18 8 8 23
46.1 19.9 25.5 20.6 14.9 17.0 9.2 14.9 13.5 12.8 5.7 5.7 16.3
58 25 8 5
60.4 26.0 8.3 5.2
53 35 30 23
37.6 24.8 21.3 16.3
Women with missing values for ever having undergone an investigation or ever having received a diagnosis (n = 8) were excluded.
Among all women with chronic pelvic pain, 96 (20%) reported that they had never had any investigations but had received a diagnosis (Table VI). Among these women the most common diagnoses were irritable bowel syndrome (30%), constipation (19%), stress (18%), and cystitis (14%). Most had only received one diagnosis. Among women with a diagnosis who had undergone investigations irritable bowel syndrome remained the most common diagnosis (46%), followed by ovarian cysts (26%), endometriosis (21%), and stress (20%). Women with a diagnosis that could only be established through laparoscopy or laparotomy (eg, endometriosis or pelvic adhesions) had the highest frequency of these investigations (57% and 64%, respectively). Comment This study showed a substantial overlap between chronic pelvic pain, genitourinary symptoms, and irritable bowel syndrome in the community. Approximately half of the women with chronic pelvic pain had at least one additional symptom; 39% had irritable bowel syndrome and 24% had genitourinary symptoms. Prevalence rates of dysmenorrhea and dyspareunia were much higher among women with chronic pelvic pain (81% and 41%, respectively) than among those without chronic pelvic pain (58% and 14%, respectively). Moreover, these high prevalence rates were found for all subgroups of chronic pelvic pain, irrespective of the presence of additional genitourinary symptoms or irritable bowel syndrome.
Our findings are consistent with the limited data available from previous studies. Mathias et al3 reported an extremely high prevalence (82%) of dyspareunia among women with chronic pelvic pain in the general US community. Another (hospital-based) study in the United States of 651 women with chronic pelvic pain reported that 43% had also had dyspareunia, 39% had a history of excessive dysmenorrhea, and 79% met the criteria for probable irritable bowel syndrome.15 The results demonstrate the range of symptoms that a doctor is likely to encounter when assessing a patient with chronic pelvic pain, with the ensuing complexity of the diagnostic problems. This complexity was reflected by the wide range of received diagnoses reported by women with chronic pelvic pain, especially those with additional genitourinary symptoms and irritable bowel syndrome. Notably, the latter group was most affected in terms of chronic pelvic pain severity and episode duration and severity of dysmenorrhea and dyspareunia. Irritable bowel syndrome was by far the most common diagnosis received. Strikingly, the second most common diagnosis was stress. This supports findings from studies in clinical settings, where high frequencies of stress, depression, and anxiety observed among women with chronic pelvic pain have been interpreted as providing a direct explanation for the pain (especially in those cases in which no obvious pathologic explanation was found). This dualistic approach is increasingly being recognized as unhelpful.16 Indeed, a meta-analysis showed that these psychologic characteristics are linked to chronic pain
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states in general rather than specifically to chronic pelvic pain.17 Modern multidimensional pain models assume that the onset and persistence of chronic pain can be influenced by a combination of the following mechanisms6, 18: (1) chronic pathologic processes in somatic structures or viscera, (2) prolonged or permanent dysfunction of the peripheral or central nervous system, (3) psychologic mechanisms, and (4) socioenvironmental factors. However, half of all women with chronic pelvic pain in the community reported never having received a diagnosis from either a general practitioner or a specialist (most of these reported never having undergone investigations and may not have sought health care). A substantial proportion of women (20%) reported never having undergone investigations but nevertheless having received a diagnosis. The diagnoses reported most frequently by this group were irritable bowel syndrome, stress, constipation, and cystitis. A thorough assessment of these women might possibly have revealed an undiagnosed pathologic condition. It should be noted that the data on the diagnoses of the women in this study were based only on respondent recall and were not validated by information from general practitioners or specialists. However, the self-reported results are important because they at least represent women’s perceptions of diagnoses given for their symptoms. Women in our study appeared to report more diagnoses and a wider range of diagnoses than registered in computerized medical records in primary care for incident chronic pelvic pain cases during a 3.5-year follow-up period (most of those in the database had only one registered diagnosis).19 This difference is likely to be in part a result of the comparison between lifetime diagnoses and those given to a woman with chronic pelvic pain during a limited follow-up period shortly after her first visit to a general practitioner. Both analyses, however, are consistent in that the most frequently recorded diagnosis among women aged 18 to 50 years was irritable bowel syndrome. We believe our findings to be applicable to women with chronic pelvic pain in the general United Kingdom population. The Oxfordshire Women’s Health Study was a carefully designed cross-sectional survey with a high response rate (74%) that focused on women’s health in general to avoid bias related to selective response. Responders were similar to the general population in terms of age and social class distribution. There is no reason to believe that the women with chronic pelvic pain who responded to the survey were significantly different from nonresponders with chronic pelvic pain, although the possibility cannot be excluded. Despite a high prevalence of chronic pelvic pain in the United Kingdom community, many women continue to have the condition undiagnosed and an even larger number appear never to have investigations performed. Those
who do have the condition diagnosed often report having received more than one diagnosis. This is not surprising because of the substantial overlap in symptoms between chronic pelvic pain and other abdominal symptoms. This overlap, as well as the wide range of possible causes for chronic pelvic pain, provides further support for the requirement of multidisciplinary settings for effective assessment and management of chronic pelvic pain. We are grateful to all the women who participated in the Oxfordshire Women’s Health Study. We also thank Jean Bradlow and Valerie Messenger at the Oxfordshire Health Authority for providing the random sample of women and Cathy Kohler for performing the data entry. REFERENCES
1. Zondervan KT, Yudkin PL, Vessey MP, Dawes MG, Barlow DH, Kennedy SH. Prevalence and incidence in primary care of chronic pelvic pain in women: evidence from a national general practice database. BJOG 1999;106:1149-55. 2. Zondervan KT, Yudkin PL, Vessey MP, Dawes MG, Barlow DH, Kennedy SH. The community prevalence of chronic pelvic pain in women and associated illness behaviour. Br J Gen Pract. In press 2001. 3. Mathias SD, Kuppermann M, Liberman RF, Lipschutz RC, Steege JF. Chronic pelvic pain: prevalence, health-related quality of life, and economic correlates. Obstet Gynecol 1996;87:321-7. 4. Jamieson DJ, Steege JF. The prevalence of dysmenorrhea, dyspareunia, pelvic pain, and irritable bowel syndrome in primary care practices. Obstet Gynecol 1996;1:55-9. 5. Beard RW. Chronic pelvic pain. BJOG 1998;108:8-10. 6. Moore J, Kennedy SH. Causes of chronic pelvic pain. Baillieres Clin Obstet Gynaecol 2000;14:389-402. 7. Rapkin AJ, Mayer EA. Gastroenterologic causes of chronic pelvic pain. Obstet Gynecol Clin North Am 1993;20:663-83. 8. Summitt RL. Urogynecologic causes of chronic pelvic pain. Obstet Gynecol Clin North Am 1993;20:685-98. 9. Prior A, Wilson K, Whorwell PJ, Faragher EB. Irritable bowel syndrome in the gynecological clinic: survey of 798 new referrals. Dig Dis Sci 1989;34:1820-4. 10. Whorwell PJ, McCallum M, Creed FH, Roberts CT. Non-colonic features of irritable bowel syndrome. Gut 1986;27:37-40. 11. Zondervan KT, Yudkin PL, Vessey MP, Dawes MG, Barlow DH, Kennedy SH. The prevalence of chronic pelvic pain in women in the United Kingdom: a systematic review. BJOG 1998;105:93-9. 12. Thompson WG, Creed FH, Drossman DA, Heaton KW, Mazzacca G. Functional bowel disease and functional abdominal pain. Gastroenterol Int 1992;5:75-91. 13. Ohnhaus EE, Adler R. Methodological problems in the measurement of pain: a comparison between the verbal rating scale and the visual analogue scale. Pain 1975;1:379-84. 14. Wallenstein SL, Heidrich G, Kaiko R, Houde RW. Clinical evaluation of mild analgesics: the measurement of clinical pain. Br J Clin Pharmacol 1980;10 Suppl 2:319S-27S. 15. Walker EA, Katon WJ, Jemelka R, Alfrey H, Bowers M, Stenchever MA. The prevalence of chronic pelvic pain and irritable bowel syndrome in two university clinics. J Psychosom Obstet Gynaecol 1991;12:65-75. 16. Grace VM. Pitfalls of the medical paradigm in chronic pelvic pain. Baillieres Clin Obstet Gynaecol 2000;14:525-39. 17. McGowan LP, Clark-Carter DD, Pitts MK. Chronic pelvic pain: a meta-analytic review. Psychol Health 1998;13:937-51. 18. Howard FM. The role of laparoscopy in chronic pelvic pain: promise and pitfalls. Obstet Gynecol Surv 1993;48:357-87. 19. Zondervan KT, Yudkin PL, Vessey MP, Dawes MG, Barlow DH, Kennedy SH. Patterns of diagnosis and referral in women consulting for chronic pelvic pain in UK primary care. BJOG 1999;106:1156-61.