Abstract
Chronic Pelvic Pain challenges the structural framework of pain, which both patient and doctor attempt to recuperate. Both patient and doctor rely on archetypal roles (the figure of the Doctor, the figure of the Woman), which need to be reconsidered for treatment to progress. The doctor's attempt to recuperate the framework relies on unsubstantiated psychogenic diagnoses and implicit blame, grounded in Freudian views of women; the patient's counterstroke is to withhold psychogenic information, including potentially valuable data on hormonal side-effects. For treatment to progress and a successful framework to be recovered, both the patient and doctor roles need to be rethought.
Introduction
The structural framework of pain is
simple, rooted in empiricism, and highly effective for the curation of
disease. It demarcates the roles of
patient and doctor, enabling them to engage in a patient-doctor relationship,
and sets the expectations of each party.
In medical terms, it is explaining a patient’s findings and symptoms
with identifiable disease processes. In
the patient’s terms, it runs thus: I am in pain; I tell the doctor about my
pain; he diagnoses the cause and may run tests to check this diagnosis; in most
cases, a cure or at least treatment is available to remove or suppress the
cause, which in turn removes the pain.
The patient’s role is to provide the raw data (description of symptoms,
tissue for analysis) and to undergo treatment; the doctor’s role is to provide
the expertise which discerns the cause from the data and which determines the
most effective treatment of the cause.
This framework serves the interests of both parties and so it is only to
be expected that each will attempt to preserve it when it is threatened. Chronic Pelvic Pain (CPP) is one such
threat.
Affecting 15-20% of women aged
between 18 and 50 (ACOG), “the exact causes of a woman’s pelvic pain can be
hard to find” (ibid) and some medical texts refer to “Chronic Pelvic
Pain Without Obvious Pathology” (Renaer, 162 and Rocker, 17). This undermines a pivotal step in the
structural framework, that of diagnosing the cause of pain. I will examine how doctors’ and patients’ attempts
to recuperate the framework break down the roles and relationship that it
demarcates and without which it cannot function. In so doing, I will illuminate some of the
societal assumptions functioning in this breakdown that significantly hinder
further research on this condition, and suggest a way out of the ensuing
impasse.
The figure of The Doctor
For the patient, the framework is
first threatened at the point of diagnosis, when she has fulfilled her role of
providing data and expects the doctor to say what is wrong. The patient cannot proceed towards treatment
within the framework unless the doctor fulfils his or her role at this
point. When the doctor fails to do this,
the repercussion is powerful.
The Endometriosis Research Centre
list-serve (ERC), most of whose members were initially diagnosed as CPPWOP
sufferers[1],
reveals a litany of outrage and frustration with doctors’ seeming to dismiss,
ignore, or play down the suffering of their patients prior to diagnosis with
endometriosis. Accusations of stupidity
and bloody-mindedness are common. The
list-serve expressly forbids giving the names of doctors, to prevent libel
cases. For privacy reasons, these posts
cannot be quoted here. However, the
Endometriosis Association (EA) hosts stories of endometriosis sufferers,
accessible to the public, which exhibit similar attitudes of frustration
towards doctors. The author of “Not Just
Another Endo Story” writes,
He [the gynaecologist] said I had small cysts on my ovary and it "shouldn't hurt". "Shouldn't hurt??" But it did hurt and my PMS was getting pretty bad. Also I felt like a baby and he just dismissed it. (EA)
The outrage implicit in the
emboldened, italicised, double question-marked “Shouldn’t hurt” results not
only from having one’s pain minimised, but from the role of the person
minimising it. Meeting with apparently
dismissive doctors is familiar to these sufferers, as the author of “The Slow
Long-Standing Disease” notes: “This Dr. was one of those Dr's I'm sure a couple
of you will or already have encountered... the one that tells you that the pain
is ‘all in your head’ or ‘just normal’.”(EA)
Another sufferer, in “I Can Relate!” tells how her GP “basically said it
was all in my head; painful periods are common; here try this pain killer.”
(EA) One can only wonder what these
doctors would make of this interpretation of their attitudes; to read these
stories and the posts on the ERC list-serve, one would think the medical world
abounded with doctors indifferent to their patients’ suffering and obstructive
about treatment or referrals. In “I Am
So Scared”, the author refers to her visits to doctors as “charades” – absurd
acts, or travesties (Collins):
Then the charades began. Doctor after doctor told me that they could not find anything and prescribed pain killers to ease my pain. One doctor had even pulled my mother aside and said that I was overweight and that I just wanted attention… I thank God that my mother didn't take the same opinion of the doctors and the same opinion that I had started to believe, that I was crazy. One starts to feel that if such profound pillars of the medical community say that you are crazy, you are. (EA)
This touches on an important
aspect of the patient’s bitterness: the doctors are not simply people dismissing
one’s suffering, but “profound pillars of the medical community”.
The figure of The Doctor, to a
patient, amounts to an archetype akin to that of the Wizard, possessed of
arcane or numinous knowledge whose operations he either does not deign to explain
or which cannot be made known so simply.
The figure of The Doctor is considerably more difficult to analyse, as
we still have doctors and so the Doctor projection a patient lays upon
her GP or gynaecologist is coalesced with her experience of actual
doctors. Features of the Doctor figure
are nevertheless implicit in their societal role. The weight given to “doctor’s orders” assumes
that the doctor always does know what’s best for you, although you may
contravene the instructions and be “naughty”, thus recalling parental
authority. A “doctor’s certificate” has legal
authority, and also plays a role that was once the domain of parents: that of
writing a sick-note. This authority is
combined with substantial knowledge: the length of time a doctor studies and
the high entrance standard of medicine is a guarantee, in the patient’s mind,
of complete knowledge. The Hippocratic
Oath reveals more features of this figure – altruism and dedication to all
who require it. This constitutes an
impressive list: parental-style authority, legal authority, complete knowledge,
altruism, and dedication. Whatever our
conscious knowledge of doctors, this figure is still operational, enshrined by
the institutions of our society and schooling our expectations. The degree of bitterness felt by many CPP
sufferers is itself a measure and function of the level of expectation: we do
not expect doctors and medical science to be subject to the limitations of
knowledge and human error which in other professions and spheres of knowledge
may be taken for granted.
This partly explains the picture
of an army of callous, spiteful doctors: a figure of tremendous authority and
trust is contravening his or her role in a framework on which the patient
depends for the removal of her pain. To
suppose incompleteness of medical knowledge would mean foregoing the rest of
the framework, and with it any possibility of treatment within that framework;
some CPP sufferers take this route and turn to alternative therapies. To suppose human error contravenes the Doctor
figure; many CPP patients cannot bring themselves to do this and are willing to
deny the evidence of their sensations or consider themselves “crazy”. From the patients who do suppose human
error, the backlash to the individual doctor is proportionate to the trust
placed in the figure of the Doctor.
Chronic Pain Syndrome and Psychogenic Pain
For the patient, pain is the problem,
but pain killers are not the solution and are seen as ‘fobbing off’ the
patient. Firstly, their common name of
‘pain killer’ is misleading; would that they just killed pain. Many pain killers fail to cover CPP; the
side-effects of those that do are frequently severe and can hinder the
sufferer’s functioning as much as the pain.
Secondly, to subscribe to the structural framework of pain, one must
start with the assumption that pain is not only a problem but a signifier
of a cause. Pain killers do not resolve
the cause. For the doctor also, pain
must operate as a signifier of a cause; if there is no cause, whence the pain?
It is full of sound and fury, but signifying nothing. If the framework is to be recuperated, this
contradiction must be resolved. In Chronic
Pelvic Pain: An Integrated Approach, Steege writes
…I am not aware of a single chronic clinical problem associated with pain in which pain is seen as proportional to tissue damage. To explain this apparent anomaly, most clinicians would agree that a pain victim’s psychologic status has a great deal to do with chronic pain. (6, my emphasis)
Another medical author puts it
more strongly:
In patients with minor physical findings or no pathology a more obviously neurotic personality is likely – perhaps even conversion/hysteria. Psychological treatment is more important, and the help of a psychiatrist is needed. (Rocker, 16)
Here, two explanations of this
apparently causeless or excessive pain are proffered, and have in fact already
been mentioned by the excerpts from sufferers’ stories above, but in
significantly different language: psychogenic pain (“the pain is all in your
head”), and chronic pain syndrome (“the pain isn’t as bad as you think”). As Steege notes (6), and as these different
terminologies show, this is met with hostility by the patient which obstructs
the clinical relationship.
Why should the clinician come to a
conclusion of purely psychogenic pain or of chronic pain syndrome? The steps in the framework to the point at
which it breaks down with CPP are as follows: the patient is in pain, the patient
tells the doctor, the doctor diagnoses the cause. These are accompanied by the following
assumptions: pain signifies a cause, the patient is telling the truth, and
medical knowledge is complete. The
assumption most crucial to the doctor’s enacting of his or her role is the
completeness of medical knowledge, and so that assumption is retained: if a
somatic cause cannot be found, there is no somatic cause.
An assumption is not a conscious
belief; it is something that is taken for granted, not examined. No clinician or patient would argue that
medical knowledge is complete. However,
for the structural framework of pain to function this completeness is assumed:
a patient with every symptom of appendicitis should be treated for
appendicitis. Usually it is
appendicitis; occasionally it is advanced endometriosis, a right-sided ovarian
cyst, or “nothing at all”. A clinician
concerned that a patient may have a life-threatening condition – appendicitis,
a twisted cyst, an ectopic pregnancy – who finds no sign of these will
experience relief at not finding anything, and often inform the patient,
“There’s nothing wrong.” To the patient
in the grip of extreme pain, this is clearly not the case. The frequency with which CPP sufferers are
told, “There’s nothing wrong with you,” is an indication of how widespread is
the assumption that if the clinician cannot find anything, there is nothing to
be found. Increasing medical knowledge,
while it is evidence of the incompleteness of the field, nevertheless
propagates this assumption: the ability to look inside wombs and at organs
feeds the notion that there is no somatic cause that can elude us. The notions of psychogenic pain and chronic
pain syndrome both depend on this assumption: it “explains this apparent anomaly”
which is only an anomaly if such a completeness is assumed.
The other two assumptions can be
more easily modified without obstructing the doctor’s role: pain as a signifier
of a non-somatic cause; the patient is telling what she thinks to
be the truth. It would be beyond the
remit, or intention, of this article to suggest that psychogenic pain and
chronic pain syndrome do not exist. What
it will examine, through an analysis of three medical texts, is the judgements
and assumptions underlying their application to CPP. The three texts are all books on CPP in women
and span a period of 17 years: Chronic Pelvic Pain In Women (1981,
edited by M. Renaer), Pelvic Pain in Women: Diagnosis and Management
(1991, edited by I. Rocker), and Chronic Pelvic Pain: An Integrated Approach
(1998, by J.F. Steege, D.A. Metzeter, and B.S. Levy).
All three books, in addition to
discussing many purely somatic causes of pelvic pain, devote a section or
chapter to each chronic pain syndrome and psychogenic pain. Chronic pain syndrome and psychogenic pain
have an important distinction, which these books emphasise: the former
attributes the degree of pain to non-somatic origins, not the initial
cause; the latter attributes the pain wholly to psychologic causes.
The originary indication that pain
may be purely psychogenic is the lack of somatic cause, or pain out of
proportion to tissue damage – “minor physical findings or no pathology”
(Rocker, 16) as quoted above. Following
this, other indications are taken into consideration: the patient’s mood;
description of the pain; attitude towards the pain; environment; history; and
simulation. The mood is typically
depressive: “exhaustive, depressed” (Renaer, 26) or “anxious, tense, irritable”
(ibid), “loss of zest for life, lack of appetite, sleeplessness, loss of
libido, lack of drive and initiative, etc.” (ibid, 30). The description of the pain and attitude
towards it both reveal an absorption in it: “A patient absorbed in her
complaints… will talk volubly and in superlatives…” (ibid, 26) and she
“loses her perspective and sense of proportion.
She becomes absorbed in all sorts of uncomfortable sensations.” (ibid,
28). The history is likely to be
extensive, with inconsistent reaction to treatments (also mentioned with regard
to simulation):
…she may thoroughly confuse the doctor by first reacting positively and even enthusiastically to treatment, and then by coming back, disappointed and complaining once again. (ibid, 29)
Finally, her relationship with her environment must be considered. A patient simulating her pain “forces her environment to deal with her as a sick person who suffers pain, from which apparently no one can relieve her” (ibid, 29) and the attitude of the mother or the husband in particular may turn overprotective (ibid, 28).
Steege lists seven factors in chronic pain syndrome, some
of which are also discussed in the other books.
As with psychogenic indications, the originary factor is “Pain Out of
Proportion to Tissue Damage” (Steege, 9).
The mood is again a depressive one: “Vegetative signs of depression” (ibid)
which may “be counted by an instrument as part of a mood problem when in fact
it is present purely because of the pain and is not generalised.” (ibid,
72) These vegetative symptoms also show
as “Loss of Physical Function” (ibid, 9). The patient’s attitude to the pain is
different to that of someone with acute pain: the “psychological distance is
lost” (Renaer, 25) and increasingly absorbs all her energy and attention: “Her
entire existence is reduced to the pain experience.” (ibid) The history is lengthy – “Duration of
Symptoms” (Steege, 9) – and often includes previous treatments that were
incompletely effective (ibid, 9).
Renaer specifically notes how common this is with CPPWOP:
It is indeed well-known that patients with CPPWOP who undergo an operation may be pleased with the result during the first few months but that after some time they may again start complaining of the same or other symptoms. (173)
Finally, the environment is
affected – “Altered Family Dynamics” (Steege, 9) – either by irritation with
the sufferer or by overprotection of her.
The two lists are identical. Whether one is suffering from chronic pain
syndrome, the result of enduring pain on a constant basis, or a neurosis, a
purely psychogenic condition, every single factor mentioned in either is
matched in the other. Furthermore,
psychological tests will show no difference either. Either way, one suffers depression measurable
by an instrument, as Steege notes above; and either way, one will appear
neurotic:
If it is assumed by definition that the group with chronic
pain not due to organic causes is neurotic – and this is confirmed by the
psychological test scores – then the similar scores of the patients with
organic lesions suggest that they are indistinguishable from the psychiatric
group in this respect. (Merskey, quoted by Renaer, 15)
Which diagnosis the clinician
gives, then, is purely a matter of judgement.
Renaer recommends CPPWOP as a special case, stressing that “The fact
that we do not find a satisfactory physical cause does not mean that the cause
is psychogenic” and that “the pendulum is swung too far if all cases of CPPWOP
are stamped as ‘mere neurotics.’” (172)
In practice, however, the psychogenic diagnosis is more common. Both the ERC and the EA quote an average
diagnosis delay of 9 years, with the patient seeing an average of 4-5 doctors
before her pain is investigated with a laparoscopy, diagnosed, and
addressed. In other words, although the
evidence is equally balanced between chronic pain syndrome and psychogenic
pain, unless there is observed pathology to the contrary, at least four
out of five doctors will assume a woman’s chronic pelvic pain is
psychogenic. Why?
I would argue that two principal factors are at work
here: societal attitudes regarding women; and a negative attitude towards
undiagnosable patients.
The figure of The Woman
The 1981 and 1990 books on Chronic
Pelvic Pain exhibit attitudes towards women which one might have thought
anachronistic. The spectre of Freud
hovers behind any mention of hysteria, but the view of women as generally
frigid or sexually repressed has since been dismissed. As an idea, however, it remains central. In explaining psychogenic pain, the first and
only example offered in Chronic Pelvic Pain in Women (1981) is
frigidity:
For example, a patient who consciously forgives her
husband’s infidelity may subsequently complain of dyspareunia: pain converted
into body language because she no longer desires coitus with her husband and
under these circumstances she may no longer have to submit to coitus. (Renaer,
24-5)
The relationship between
dyspareunia and frigidity is not at stake here: what is, is its status as an
example and the views embedded within this example. Examples are usually chosen for their
familiarity as well as their typicality; frigidity is chosen as more
immediately accessible than, for instance, the need to control one’s
environment. The indications of
psychogenic pain that follow emphasise psychogenic pain as a form of control
and self-importance, which suggests that pain as drawing attention to oneself
might be the more typically and clinically familiar example. Further, two features of this example stand
out. Firstly, “her husband’s infidelity”
places the marital relationship at the centre of the woman’s psychic
experience, whereas dyspareunia is more frequently associated with sexual abuse
trauma. Secondly, “she may no longer
have to submit to coitus” paints an alarming view of this marital relationship:
“have to” suggesting obligation and “submit to” suggesting passivity and again
an absence of choice.
The assumptions of passivity,
frigidity, and the centrality of marriage to a woman’s psyche recur several
pages later, on the subject of ‘hysterics’:
Some patients affect ‘la belle indifference’ [sic] but may in this way mask anxiety and uncertainty. They have often played a passive masochistic role in their lives, which may have started with an unhappy marriage and with frigidity. (Renaer, 31)
The “anxiety and uncertainty” are
simply presupposed, as is the “unhappy marriage” and “frigidity”. The antecedent for “which” is ambiguous: is
it the role, or their lives, which started with an unhappy marriage and
frigidity? The former – obviously – yet
the only psychologic explanations given in the chapter are the two quoted
above, eliding any other psychic component or influential experience.
The assumption that women are
sexually timid operates even when the evidence points to the contrary. In Pelvic Pain in Women: Diagnosis and
Management (1990) we are told that
Women of all ages are remarkably frank in giving an indication of their sexual life. The relationship of sexual experience and pelvic pain relies on a careful discussion aimed on giving the patient confidence. The majority of patients will enter into discussion given the opportunity to do so, if the timing of the question is carefully chosen or even delayed for a second interview and the possibility given of choice of the sex of the interviewer. (Rocker, 26)
The sexual life of a CPP sufferer
is important information, considering that much of the pain centres around
sexual and reproductive organs. The
author offers several pieces of advice on how to carefully and tactfully elicit
information about a female patient’s sex life: a “careful discussion” to give
her “confidence”; choosing the time carefully; delaying the discussion;
offering the option of a woman interviewer.
Why all this delicacy should be necessary when women are so “remarkably
frank” is not immediately clear, but the word “remarkably” offers a clue. Their willingness to supply important
diagnostic information surprises the author: they are supposed to be
timid and need tactful handling, and so shall receive it, whether they need it
or not.
Views of women as frigid and sexually
timid are thus playing a role in these two texts that the clinical reality does
not justify. A gender construction, not
an empirical observation, is at work.
Other gender constructions also emerge, such as the view of women as
primarily emotional:
The pelvis has symbolic importance for women, and this is
particularly important in relation to sexual function, to reproduction and in
marital relationships. Doctors must be
sensitive to this aspect of pelvic disease, which is seldom articulated by the
patient in words. (Rocker, 15)
The symbolic importance –
the emotional meaning – is emphasised, but what follows is the functionality of
the pelvis: sex, reproduction, and the role of sex in a ‘marital’
relationship. A symbol stands for
something else, but what is the pelvis standing for, here? The uterus, ovaries, and vaginal tract that
it contains and in which CPP is usually experienced? The restrictions that CPP places on sex and
reproduction are emotional issues, but this is owing to a loss of functionality,
not a symbolic, emotional attachment to the pelvis.
The primacy of women’s emotional
state is also emphasised in the earlier book:
As we saw earlier, there are several factors that may make a patient decide to present a pain complaint to a doctor. Among them are the intensity of her pain and her emotional reaction toward it. This reaction depends on many circumstances; for example, the meaning or supposed meaning of the pain, the personal history of the patient, her social and cultural environment, the situation in which the pain develops (depression, search for compensation, craving for tenderness, etc.). (Renaer, 15)
Before any investigation takes
place, a woman’s emotional state is centralised in terms of psychologic
causation.
While the emotional component is heavily emphasised, the
physical component is frequently underemphasized. The ERC homepage notes that in the past
endometriosis was “long stigmatised as ‘killer cramps’” and the ERC list-serve
bears witness that this continues. In
discussing variation in pain complaints, Renaer notes that
…a woman who grew up in a family in which the mother and/or elder sisters regularly and ostentatiously suffered abdominal pain will behave differently from one whose environment was of the opinion that physical discomfort was to go unnoticed. (26)
“Ostentation” is a pretentious,
showy, or vulgar display, and “ostentatiously” is an emotive and judgemental
choice of word compared to the possibilities of “openly” or “visibly”. Renaer leaves no doubt about which pain
behaviour he privileges, which hearkens to the Patient Griselda image of women
as enduring without complaint. Steege’s
comments on pain behaviours also emphasises the importance of not complaining:
…if pain medication is prescribed on a set schedule (as opposed to as needed), the patient is less likely to demonstrate increased pain behaviours (grimacing, resting, voicing complaint) to justify the use of the medication. At the same time, the surrounding family members are less likely to feel the need to respond to the pain behaviours / complaints in some fashion. (8)
The set schedule is recommended
here not as more effective against pain, but to discourage the sufferer’s
complaints and the environment’s response.
In other words: suffer in silence, don’t inconvenience other people by
suffering.
Being forthcoming about one’s pain
is framed as a form of manipulation, rather than an active contribution to the
diagnostic process. A “passive patient,
who submits to her pain, will give nothing but a vague, even sparing
description” (Renaer, 26); one would expect a more forthcoming patient to be
more positively described as she provides the detail the clinician
requires. Despite this, this alternative
is painted negatively:
While describing all this [her pain, “using baroque imagery”], the patient may look as if she is carrying most of the world’s woes – or she may put on a mysterious, Gioconda-like smile, which will give the doctor a most unpleasant feeling of powerlessness. (Renaer, 26)
The complaint is portrayed as a
self-pitying bid for sympathy or a smug “put on” display which makes the doctor
feel powerless: both depictions imply an intent to manipulate.
In the cracks of the writing
emerge notions about women that the authors would no doubt consciously reject:
unsubstantiated views of women as typically frigid or sexually timid, and their
reactions as primarily emotional; an ideal of women as uncomplaining; and an
implication of manipulation when they complain freely.
Unreal pain and implicit blame
That psychogenic pain is not deliberate manipulation is
stressed: “Simulation, i.e., active and conscious feigning of a nonexistent
pain complaint, is rare” (Renaer, 25) and “the pain felt by an individual is
always real pain; she (in the case of pelvic pain) indeed experiences the
pain.” (Steege, 6) Choosing a diagnosis
of chronic pain syndrome or psychogenic pain should not therefore be one of
apportioning credit or blame: “no matter what its genesis, for the patient pain
is a true experience, against which she is as powerless as any human being
against an emotion that overwhelms them.” (Renaer, 25) Nevertheless, discussions of both chronic
pain and psychogenic pain exhibit an implicit criticism of psychogenic pain.
In Chronic Pelvic Pain: An
Integrated Approach this takes the form not of blaming psychogenic
patients, but crediting patients in whom psychogenic factors are lesser. For
instance,
Every clinician has seen patients who are afflicted with chronic pain and who steadfastly maintain their ability to perform everyday functions without showing signs of clinical depression and without worsening of the pain. They have learned to live with it in the best sense of the phrase. In many others, function gradually declines, depression worsens, and pain spreads. (Steege, 9, my emphasis)
“Steadfastly maintain their
ability” and “They have learned to live with it” both assume agency, and credit
the patient with achievement. One cannot
have it both ways, however: if resisting psychogenic components is an achievement
that a patient is capable of, then not doing so is a failure. This failure is associated with both
emotional and physical strength: the “healthiest of individuals, physically and
psychologically” and “the most emotionally robust” are singled out as less
likely to suffer psychogenic components, although “it can happen” “even” to
them. (Steege, 9) To a patient faced with consistent failure –
failure to think clearly while in pain or on medication, failure to earn one’s
living, failure to pay bills, failure to maintain a household, failure to meet
deadlines – any suggestion that this is due to emotional weakness is maddening.
These are mild examples and this
book is elsewhere free from any suggestion of criticism. The attitude towards psychogenic pain in
Chronic Pelvic Pain in Women, in contrast, is at times openly hostile. On the one hand, it notes that the opacity of
the field “makes many doctors feel ill at ease or even irritated” (Renaer, 24). On the other hand, this irritation is
repeatedly displayed in the section of psychogenic pain, and many of the indications
of psychogenic components in fact presume psychogenic pain. For instance, the discussion of the
environment claims that
The environment will be helpful and solicitous of a patient with somatic pain, but when there is a history of psychogenic pain, especially one that drags on and on, their attitude will unavowedly become irritated or resigned… (Renaer, 28)
The environment is here credited
with medical knowledge beyond the doctor’s own, presuming the doctor is still
trying to establish whether the pain is psychogenic: their irritated or
resigned reaction is seen as a reaction to a history of specifically
psychogenic pain. Describing a
lengthy history as “one that drags on and on” is unnecessarily emotive. Equally emotive and negatively framed is the
patient’s self-pitying / manipulative description of the pain discussed above. The depiction of attitude is equally critical
and prejudging,:
It is normal for pain to be alarming as long as no sufficient explanation of its origin is forthcoming and as long as no treatment is being applied. However, psychogenic pain continues to occupy the centre of the stage and the patient’s logorrheic analyses (“I’m perfectly willing but my pain down there is not”) will soon try the doctor’s patience. (Renaer, 28)
If a psychogenic diagnosis is
being considered, we assume that “no sufficient explanation” has yet been made
and hence treatment of the origin is not yet possible. The following sentence, however, presupposes
psychogenic pain rather than the continuation of a “normal” alarm about one’s
pain and offers the doctor’s own impatience as further evidence. The patient’s analyses are qualified as
“logorrheic” – incoherent or uncontrollably talkative (Collins) – and the
direct speech implies she pretends to be willing when she is not. The passage continues to portray the patient
as obstructive: “the complaints are projected outside, there to serve as a
stumbling block between patient and doctor,” and “the patient is unwilling to
listen or reluctant to react adequately to the explanation of the somatic
findings” (Renaer, 28). “To serve as
a stumbling block” implies that the purpose of the complaints is to sabotage
the doctor-patient relationship, rather than to express a psychological
problem. The patient’s refusal of the
somatic findings is seen as unreasonable, even though the starting point of a psychogenic
explanation is that the somatic findings are insufficient. The most telling denunciation of psychogenic
pain is, ironically, in defence of CPPWOP: “It would therefore seem that the
pendulum is swung too far if all cases of CPPWOP are stamped as ‘mere
neurotics’.” (ibid, 172) To have
psychogenic pain, then, is to be a ‘mere neurotic’.
Having a patient with pain that
evades diagnosis is understandably frustrating – “They can puzzle you, and they
can frustrate you” (Steege, 75). The patient’s own negativity can also be
frustrating:
They [patients with chronic illness] are often experienced observers of doctors. Commonly they are disillusioned, believing that the doctor will not believe them or will be unable to help them. Doctors commonly give a sigh of frustration when such a patient appears in a busy clinic with a seemingly interminable history and a bulging case file. (Rocker,17)
As discussed above, the backlash
from a patient whom doctors cannot diagnose is often fiercely hostile. Both parties are entering the clinical
relationship with frustration. The
evidence for chronic pain syndrome and psychologic pain is, as discussed above,
equally balanced. A diagnosis of chronic
pain, however, requires a higher opinion of the patient’s emotional and
psychologic strength and a higher valuation of her opinion. In a fraught clinical relationship, such an
estimation may be difficult. If there is
already a tendency to regard a woman as frigid / sexually timid, primarily
emotional, or manipulative in her persistent complaints, then ascribing chronic
pelvic pain to purely psychogenic causes is hard to avoid.
Such a diagnosis is not
necessarily wrong. The patient may well
be suffering psychogenic pain.
Assumptions, by definition, are not necessarily wrong; however, they
cannot lay claim to objective empiricism.
As the empirical structural framework of pain cracks open, and each
party attempts to preserve it, increasing subjective factors come into play in
the spaces: the patient becomes excessively critical of her doctors, assuming
them to be stupid or callous; the doctor’s societal views of women, attitude
towards psychogenic pain, and personal estimation of his or her patient are
brought to bear. Various assumptions
underlying the framework are called into question: that pain is a signifier of
a somatic cause; that the patient is telling the truth; and that the doctor is
infallible, authoritative, and has his or her patients’ best interests at
heart. These necessary readjustments can
and often do have a terrible effect on the clinical relationship: each party
can be seen by the other as reneging on his or her role. One assumption is yet to be questioned, which
neither party believes but on which both are operating: the completeness of
medical knowledge. Moreover, not only is
it still operational, its revision is significantly hindered by the relational
breakdown. The patient, from whom the
information for research must come, has begun to withhold data.
The patient’s counterstroke
The patient’s resistance to a
psychogenic diagnosis has a three-fold motivation: fear that somatic causes are
being overlooked; a negative perception of psychogenic illness; and
self-knowledge.
A patient who fears that somatic
causes will be dismissed and not explored will withhold psychologic
information. Anna Shortcliffe writes in
the history of ‘KB’: “When she was in pain, she was very fearful of discussing
her negative life experiences, such as her abusive upbringing, alcoholism, and
pregnancy loss, fearing that providers would decide these things caused her
pain.” (Steege, 30) The patient now
begins genuinely to renege on her role of providing the data, because of a
perception that the doctor may renege on his or her role of providing accurate
diagnosis. If her psychological test
scores are taken as proof of psychogenic pain, this fear will be justified: as
seen above, such scores are typical of both psychogenic and chronic somatic
pain. Furthermore, purely by virtue of her gender, this fear is real: women are twice as likely as men to receive psychogenic diagnoses (Bernstein, 1981) and less likely to receive laboratory tests (Wilcox, 1992).
All three books emphasise the
importance of eliciting psychologic information without provoking this reaction
in the patient. Two of these emphasise
the importance of seeming to believe the patient: “Whatever the findings – or
lack of findings! – a doctor must never give the impression of not believing in
the reality of the pain complaint.” (Renaer, 25) “The patient should be asked
whether she has had a history of psychiatric illness, but this should be done
tactfully in a patient who considers her illness to be physically based.”
(Rocker, 16) Chronic pain patients are,
however, “experienced observers of doctors” (ibid,17) and the appearance
of belief may not be convincing, especially if it is not followed up by somatic
investigation. A perception that a
doctor is pretending to believe one will reinforce negative perceptions
of psychogenic pain: if the doctor has to pretend to believe in the pain, he or
she is not taking it seriously.
Moreover, a doctor who exhibits any of the irritation with psychogenic
pain shown in Renaer’s text will struggle to obtain psychologic information from
any but the most trusting patients – a characteristic exhibited by few chronic
pain patients.
A further reason women may resist
psychogenic diagnosis is their own self-knowledge. Women are accustomed to reading the
signs of their own bodies: from the onset of puberty, we must remain alert to
our physical and mood symptoms. Whether
to take tampons or pads to school/work, whether one’s anger is better addressed
now or in a few days’ time, whether one is ovulating, premenstrual, or
pregnant, are all practical issues that require accurate interpretation of
one’s bodily and mental state. Women
with irregular cycles must become especially adept at this interpretation. This self-knowledge can work for or against
the clinician. In the case of a
psychogenic diagnosis, the latter is more likely. A woman suffering the mood imbalance typical
of both chronic and psychogenic pain will know her own state and is thus in a
better position to hide and deny it if she fears this will exclude further
somatic investigation. When this
self-knowledge is routinely ignored, this withholding becomes more
important. The extent to which a
patient’s self-knowledge can be underestimated is shown in this passage:
When the impact of chronicity on pain threshold is described, some persons disagree, replying that they feel they have developed a great resistance to their pain over time, have learned ways to cope with it and ignore it when possible, and therefore fear the expansion of organic pathology as the reason for their recent increases in pain. This is a difficult part of the discussion, because their reasoning sometimes is certainly accurate. In such cases, a full exploration of the extent of organic pathology should certainly be carried out to clarify this discussion. When appropriate, pain mapping by microlaparoscopy can calibrate a person’s pain threshold to a standard stimulus – for example, applying a tenaculum to the cervix or probing internal non-gynaecologic structures. (Steege, 284)
The validity of the patient’s
self-knowledge is certainly being considered here, but it is not believable
without empirically measurable evidence.
The “complex phenomenon of pain perception” (ibid, 8) is not
fully understood, but the default position is that the patient should agree
with the doctor that her pain threshold has lowered. When she does not agree, this procedure is
recommended to test her opinion: only her opinion is tested, not the
doctor’s. Moreover, the procedure
described may be enough to make any CPP patient back down or lash out with
anger. The patient’s pelvis is in
considerable chronic pain; painful internal investigations are already being
endured on a regular basis. Applying
painful stimulus to such a patient’s cervix to prove a point seems excessive,
especially when the reverse hypothesis is apparently in no need of such
testing.
Unless trust is rebuilt, the
patient will continue to withhold evidence from the clinician, and her own
self-knowledge will enable her to do so.
To restore the relationship, every motivation for this reticence must be
addressed. Firstly, continuing the
investigation on both somatic and psychogenic grounds is effective. In the case of KB, “When she was given
permission to have both pain and negative experiences, she was able to
work simultaneously on all the contributing factors.” (Steege, 30) Secondly, as Steege notes, the patient needs
to be educated about the relationship between body and mind in pain experience;
Chronic Pelvic Pain: An Integrated Approach offers several useful models
for this purpose. Thirdly, CPP is a serious
diagnosis and needs to be treated seriously.
Steege writes that,
Women with CPP often live in hope of a simple (or, at least, certain) cure… Realistic goals for a patient as an individual should be established early in the process. Although complete pain relief is often hoped for, the more reasonable goal may be pain management with improved function. (282)
For a patient to learn that she
has a painful and currently incurable condition is shocking news. Sufferers’ personal stories indicate that
often, rather than a detailed discussion of how to adjust, their pain is
minimised and the implications of their condition simply inferred.
The CPP sufferer has her own work
to do. Idealistic and hypercritical
attitudes towards her doctors need to be revised. If one wishes to have a sympathetic doctor,
one cannot be a hostile patient; whatever the saintly traits of the Doctor
figure, one’s own doctor is a person.
The simplistic approach of placing all responsibility for her illness on
her doctor, who must now “fix it!” needs to be replaced with a more adult
attitude, which includes self-education.
Many of the sufferers on the ERC list-serve recognise, retrospectively,
their failure to inform themselves, trusting to an illusory medical
infallibility. Finally, in the context
of a condition in which so little is known and so much is guess-work, there is no
place for assuming that medical knowledge is complete. If one has any hope for research into a cure,
one has a duty to provide as much information as possible, including the
psychogenic information currently being withheld. An informed patient who takes responsibility
for her own well-being cannot hide behind the excuse of being denied somatic
investigation; she can request it.
One possible way forward
Further information is required by
both parties, who both have an interest in restoring the framework. Clinging to the old pattern of the framework,
however, has been shown to be destructive, leading to a breakdown in the
clinical relationship and a withholding of psychogenic information. Perhaps the term ‘psychogenic’ is
inappropriate here: the body/mind divide is inapplicable to a large portion of
women’s experience: hormonal cycles transcend the divide effortlessly. In a pain condition centred around a woman’s
reproductive organs, and partially treatable with hormonal intervention (ACOG),
it seems at the very least possible that hormonal effects may provide
the necessary clues that may lead to a cure.
For these effects to be taken into account, however, the doctor and
patient roles need to be rethought. The
clinician will need to trust the woman’s self-knowledge at least as much as he
trusts his own judgement when somatic evidence is lacking. The patient needs to trust the doctor with
hormonal, emotional information, not with the childlike trust previously
disrupted, but from an informed and empowered position. This rethinking of roles offers a possible
approach to reopen communication between patient and doctor, and between pain
and its source – whatever that may be.
Epilogue
Through the articles and journals I studied for this paper,
I was able to diagnose myself with endometriosis. I requested a laparoscopy – an operation with
an internal camera, the only way to prove endometriosis somatically – and was
told by my gynaecologist that they would “find nothing”; I insisted, and was
given it. The results confirmed my diagnosis.
Treatment has proved difficult. The hormonal options all have side-effects
for me, ranging from severe panic attacks to depression. The ‘Mirena’ coil (progesterone-lined)
provided relief for a year and a half, before the hormonal side-effects became
unbearable: my cycle became increasingly long, with up to 11 weeks of PMT. A friend who also had the Mirena coil and the
same side-effects after the same time-lag encouraged me to have it
removed. The gynaecologists denied that
the Mirena coil could possibly have the effects I described, but removed it on
my insistence. My cycle returned to
normal within two months. The family
planning clinic reacted with horror to my suggestion I return to the copper
coil: they took it for granted that it would exacerbate my endometriosis,
whereas none of the other gynaecologists had even considered it as a
contributing factor. For years, now, with my consultant's approval, I have worked through a cycle of using the Mirena coil for short periods and then taking a break. Explaining my situation to the family planning clinic every year or couple of years has been a fascinating snapshot of changing attitudes to progesterone intolerance, from bewilderment to denial that it exists to skepticism to limited recognition.
Works cited
ACOG (American College of
Obstetricians and Gynecologists).
http://www.acog.org.. Last accessed 15 July 2004.
Bernstein, Barbara; Kane, Robert. “Physicians' Attitudes Toward Female Patients” in Medical Care. 19(6):600-608, June 1981.
Collins Shorter English
Dictionary. Glasgow: HarperCollins
Publishers. 1993.
Endemetriosis Research
Centre. http://www.endocenter.org. Last
accessed 15 July 2004.
Endometriosis Association. http://www.endometriosisassn.org. Last accessed 15 July 2004.
The Endometriosis Website. http://www.endometriosis.org. Last accessed 15 July 2004.
Renaer, M. (Ed.) Chronic
Pelvic Pain in Women. Berlin,
Heidelberg, New York: Springer-Verlag. 1981.
Rocker, I. (Ed.) Pelvic Pain
in Women: Diagnosis and Management. London,
Berlin, Heidelberg, New York, Paris, Tokyo, Hong Kong. 1990.
Steege J.F., Metzeter D.A.,
Levy B.S. Chronic Pelvic Pain: An
Integrated Approach. Philadelphia,
London, Toronto, Montreal, Sydney, Tokyo: W.B. Saunders Company. 1998.
Wilcox, Victoria L. “Effects of Patients' Age, Gender, and Depression on Medical Students' Beliefs, Attitudes, Intentions, and Behavior” in Journal of Applied Social Psychology, 22:14, July 1992: 1093–1110.
[1]
Endometriosis is a form of CPP, although not of CPPWOP. However, the earlier stages of endometriosis
do not show the ‘powder-burn’ lesions with which endometriosis was previously
exclusively associated. Prior to the
discovery of red and clear early endometriosis lesions, many of these sufferers
could be said to have had CPPWOP.
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