J R Soc Med 2002;95:531-535
doi:10.1258/jrsm.95.11.531
© 2002 Royal Society of Medicine
Health services for women with chronic pelvic pain
R William Stones MD FRCOG
Catherine Price DCH FRCA 1
Community Clinical Sciences Research Division, University of Southampton,
UK
1 Southampton University Hospitals NHS Trust, Southampton, UK
Correspondence to: R W Stones, Level F (815), Princess Anne Hospital,
Southampton SO16 5YA, UK E-mail:
r.w.stones{at}soton.ac.uk
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INTRODUCTION
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The planning of effective services for patients with particular
conditions
demands an understanding of epidemiology, pathophysiology
and therapy. In the
case of chronic pain in general, and chronic
pelvic pain in particular,
elements of the pathophysiology are
beginning to be elucidated, and certain
treatments that were
formerly deployed only in pain clinics are now entering
use
in gynaecological settings. These developments have been reviewed
elsewhere
1.
Here we
assess the scale of the health problem posed by chronic
pelvic pain (CPP) and
the kind of clinical services that would
optimize outcomes.
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EPIDEMIOLOGY AND HEALTH IMPACT
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Thanks to population based studies in the USA and in the UK,
robust
estimates of the incidence and prevalence of CPP are
now available. The first
of these was an opinion-poll-style
telephone
survey
2 in which
American women aged 18-50 were interviewed
about pelvic pain related symptoms.
17 927 households were contacted
and 5325 women agreed to participate. Of
these, 925 reported
pelvic pain of at least six months' duration, including
pain
within the past three months. After exclusion of those who were
pregnant
or postmenopausal or having only cycle-related pain,
773/5263 (14.7%) were
identified as suffering from chronic pelvic
pain. Direct costs of healthcare,
estimated from Medicare tariffs
and hence very conservative, were $881.5
million; patients'
out-of-pocket expenses were $1.9 billion; and indirect
costs
due to time off work were $555.3 million.
A British postal survey included 2016 women randomly selected from the
Oxfordshire Health Authority register of 141 000 women aged
18-493. In this
study chronic pelvic pain was defined as recurrent pain of at least six
months' duration, unrelated to menstruation, intercourse or pregnancy. For the
survey, a ‘case’ was defined as a woman with chronic pelvic pain
in the previous three months, and on this basis the prevalence was 483/2016
(24.0%). Among those with pelvic pain, dysmenorrhoea was reported by 81% of
those who had periods and dyspareunia was reported by 41% of those who were
sexually active. Among women who did not have chronic pelvic pain as defined
above, dysmenorrhoea was reported by 58% of those who had periods and
dyspareunia by 14% of those who were sexually active.
Not all women who experience CPP consult their general practitioner about
it, and of those who do, not all are referred for hospital investigation.
Among the 483 Oxfordshire women with chronic pelvic pain, 195 (40%) had not
sought a medical consultation, 127 (26%) reported a past consultation and 139
(29%) reported a recent consultation for
pain3. Another study
by the Oxford group analysed contacts with general practitioners by means of
data from a national database: of women identified as cases of pelvic pain,
28% were not given a specific diagnosis and 60% were not referred to
hospital4. It is
noteworthy that these national data have shown consulting rates to be just as
high among older women, whose experiences have so far not been studied at the
population level.
The US population-based study likewise drew attention to the large numbers
of women who have troublesome symptoms but do not seek medical attention: 75%
of this sample had not seen a healthcare provider in the previous three
months. It is possible that not seeking care would indicate milder symptoms,
and indeed in the US study those who did seek medical attention had higher
pain and lower general health scores than those who did not. However, among
those not seeking help, scores for pain and functional impairment were still
substantial.
The impact of chronic pelvic pain on health-related quality of life has
been assessed by use of the SF-36 questionnaire in the Oxfordshire study and
also among women referred by general practitioners to a gynaecology outpatient
clinic in Southampton (i.e. not a specialized pain service). The SF-36 has
eight subscales which can be concatenated into two summary scales, the
‘mental component’ and the ‘physical
component’6.
Figure 1, based on data from
the Oxfordshire and Southampton studies, uses these scales to illustrate the
trend in mental and physical quality-of-life impact among women with
CPP—on a spectrum ranging from those who seek medical advice, through to
those investigated in hospital.
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Figure 1. Summary scores for mental and physical component scales in relation to
consulation history. Circles are means and bars are 95% confidence
intervals for the SF-36 mental component and physical component summary
scales. a=women with pelvic pain seen in a general gynaecology clinic
(Ref. 5); b=women
reporting recent consultation (Ref.
3); c=women reporting
a previous consultation (Ref
3); d=women reporting
consultation (Ref. 3).
Arbitrary units such that 50 represents the mean of a normal population.
Figure reprinted with permission from Shaw, Soutter and Stanton
Gynaecology, 3rd edition (in press)
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OPTIMIZING TREATMENT OUTCOMES
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In the general hospital series described above, a spectrum of
chronicity
and severity of pain was reported. At six-month follow-up
most women reported
improvement of their pain: just under one-quarter
reported complete resolution
and the median visual analogue
score for ‘usual level of pain’
fell from 67 to
20 on a 100 mm scale. In a multivariate analysis improvement
was
associated with a range of illness and consultation related
variables; for
example, the presence of endometriosis was associated
with a higher level of
continuing pain, while a good initial
consultation had a favourable influence
on outcome, especially
in those without exercise
impairment
7. Thus
far, however, good
or bad outcome cannot be predicted with accuracy. In the
context
of general gynaecological practice, what steps can be taken
to
optimize the outcome of referrals and consultations for chronic
pelvic
pain?
The consultation
The typical woman who reaches the gynaecologist has experienced symptoms
for months or years before consulting even her general practitioner. She has
high expectations of her consultation with the specialist. By contrast, the
gynaecologist may see the purpose of the visit as to rule out organic
abnormality (which will seldom be present). A risk of a mismatch of
expectations exists, and this is doubtless part of the reason for women's
reported frustration and dissatisfaction with such
contacts8,9.
These negative elements of the consultation can be counteracted by efforts on
the part of the clinician to establish the patient's goals and expectations,
and to meet them as far as possible. For many women, explanation of the cause
of symptoms is as important as the pursuit of symptomatic relief; for others,
the objective is symptom control.
Unrecognized irritable-bowel syndrome
In view of the high prevalence of irritable-bowel syndrome (IBS) in the
female population and the considerable overlap of this form of visceral pain
with CPP, the history must include detailed enquiry about bowel function. IBS
is a clinical diagnosis based on a constellation of suggestive symptoms
including diarrhoea, constipation and abdominal distension in association with
acute episodes of pain. Distension is a common symptom in the premenstrual
phase of the cycle and this needs to be distinguished from distension
associated with pain. Dyspareunia should not be ascribed to IBS unless the
pain is described as building up after rather than during intercourse.
Abdominal and pelvic examination can be helpful in identifying a loaded large
bowel in those who have an apparently normal bowel habit but are in fact
chronically constipated. Stimulant laxatives such as sodium picosulphate
elixir are more appropriate than bulking agents or lactulose, which can
exacerbate bloating and colonic
spasm10.
Recognition of psychological morbidity
Whether a woman with CPP proves to have endometriosis or no evident
disease, her likelihood of a concomitant mood disorder is the
same11. Clearly,
mood disorder is easily missed in a general gynaecology clinic; however,
simple enquiry about mood and sleep should be routine. There is no evidence
that antidepressant treatment per se will ameliorate the symptoms of
CPP12, but
treatment of depression or anxiety will improve the patient's general quality
of life. It is important to identify individuals with multiple unexplained
physical symptoms, who may be at risk of inappropriate surgical or medical
treatment; in such cases, psychiatric liaison referral is called
for13.
The multidisciplinary approach
For women who have not responded to initial investigation and treatment,
further management demands strategies beyond the capacity of a typical
gynaecology clinic. In a pain clinic the aim is to ameliorate symptoms while
avoiding the adverse effects of long-term therapy. Pain clinics tend to focus
on functional capacity, and key elements of this approach are a halt to
further investigations, provision of continuity of care and the offer of
follow-up on a time-contingent rather than pain-contingent basis. Services
include direct pain-relieving interventions including the use of tricyclic
antidepressants, anticonvulsants or nerve blockade. The multi-disciplinary
‘package’ may include cognitive behavioural psychotherapy,
physiotherapy, nursing support (especially for problems with medications
between clinic visits) and the use of complementary treatments such as
acupuncture. Some elements of the programme can be offered to groups rather
than individuals, and this not only saves money but also yields peer
support.
Information about women referred to British pain clinics for chronic pelvic
pain is available from the Pain Society's PACS database, to which many units
contribute anonymous data in a standard format. During 1998-2001, of 284 women
identified as having chronic pelvic pain, 200 reported that the symptom had
been present for more than two years. Scores on the various dimensions of the
Brief Pain Inventory were very similar to those in the general pain clinic
population (Figure 2). However,
the range of treatments offered was rather different, with medication
preferred over injections (Figure
3). Psychotherapy and physiotherapy were little used, doubtless
because most UK clinics have very limited access to those treatments.
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Figure 2. PACS database 1998-2001: all patients (n=3156) and women with
pelvic pain (n=244). Initial mean and worst pain intensity scores
and other domains of pain impact from the Brief Pain Inventory
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Figure 3. PACS database 1998-2001: treatments provided to all patients
(n=40 958) and to women with pelvic pain (n=472)
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The results of CPP referral to pain clinics have not been notably
encouraging. Why should women with CPP fare less well than, say, those with
longstanding musculoskeletal pain? One reason is that many will still be in
search of a cure—perhaps even appropriately, since treatable conditions
such as endometriosis, ovarian entrapment post-hysterectomy or abdominal wall
nerve related pain sometimes go unrecognized. Moreover, group activities can
be difficult when participation requires a woman to speak of intimate and
embarrassing symptoms. There is therefore a strong case for a targeted
multidisciplinary service configuration where women are seen in a specific
clinic including a gynaecologist as well as the pain management team. The role
of the gynaecologist is to identify treatable disease or functional conditions
that can be influenced to reduce the level of pain. For example, hormonal
manipulations are helpful in pain related to pelvic congestion and
endometriosis, and access to laparoscopic surgery is essential for those with
continuing active endometriosis. Specific advice may be required when the
adjunctive therapy interacts with existing medication—for example
carbamazepine and the combined oral contraceptive pill. For women who have
undergone several unsuccessful interventions and who are now experiencing
neuropathic or post-surgical pain the gynaecologist's continued interest can
ease the patient's reorientation towards a pain-managment mode of thinking,
and enable her to give up the fruitless quest for a specific cure. Strategies
such as cognitive behavioural therapy require a high level of motivation which
is absent in those who still believe that the doctor can get rid of the
pain.
The main evidence to support a multidisciplinary approach to CPP comes from
a randomized trial conducted in
Leiden14. This
study showed a benefit for the multidisciplinary approach versus conventional
management in self-assessment and quality-of-life outcomes, but not in McGill
pain score—a result consistent with the typical objectives of a pain
management programme. There are questions to be addressed about the
configuration of a multidisciplinary clinic: which elements are essential and
which peripheral to success? There is strong (grade A) evidence for the
effectiveness of cognitive behavioural therapy in other chronic pain
conditions15. We
cannot ask for randomized trials of every component in comparison with all the
others, so future clinical practice will need to be guided by observational
studies and audits of clinical outcomes. At present, cost—utility
analysis is required to assess the effectiveness of multidisciplinary care for
CPP patients in relation to the high costs of provision, set against the
benefits to the patient in terms of functional improvement and the avoidance
of subsequent multiple referral, investigative procedures and surgery.
In the UK, access to multidisciplinary pelvic pain clinics is at present
very limited, and a much greater provision is
desirable16.
Meanwhile some form of triage will continue to be required—based on
severity of pain and functional impairment and an incomplete response to
conventional gynaecological treatment—to identify those most in need of
those extra resources. But longitudinal research might well show that this
sort of triage is entirely the wrong approach: a better strategy might be to
intervene rapidly when a woman has a new episode of pain, so preventing
progression into functional impairment and the chronic pain state.
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CONCLUSION
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Clinicians can do much to improve the experience of care for
women with
chronic pelvic pain, and to bring into the gynaecological
setting some of the
insights that have influenced current pain
management approaches. As the
burden of illness and functional
impairment resulting from CPP becomes ever
clearer there will
be growing demand for health services that offer a full
range
of treatments.
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INTRODUCTION
EPIDEMIOLOGY AND HEALTH IMPACT
