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.
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, 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.
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.
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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.
 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.