Friday, 21 November 2014

The Disruptive Discourse of Chronic Pelvic Pain

An academic article rather than a personal post, originally written in 2004 with a minor update to the Epilogue. This article explores how the structural framework of the doctor-patient relationship breaks down when women have unexplained Chronic Pelvic Pain (CPP), and explores some of the gender prejudices underlying this through a textual analysis of three books on chronic pelvic pain. These books were not specifically chosen for their gender prejudice; they were all I could find in the Bodleian Library on the subject of CPP in 2004.

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.

Wednesday, 25 June 2014

Is this a beautiful shape?


Is this a beautiful shape? I could post this on Facebook and get the usual slew of obligatory compliments: "You look fantastic!" "Sooo beautiful!" "What a stunning bump!"  And so on.

Except I'm not pregnant. This isn't the elegant curve of a baby bump, it's the indistinguishable curve of endometriosis. It really is indistinguishable: when my endo's bad, I look so convincingly pregnant that I'm offered seats on buses, told off for drinking by strangers, congratulated by acquaintances. To add to the versimilitude, I often protect my stomach from painful knocks with a hand, exactly the sheltering gesture of a pregnant woman. Except I'm not pregnant.

What you're seeing there is mostly inflammation. You know if you slam your finger in the door, it swells? That swelling, that's inflammation. But you don't think your finger's suddenly got fat. You don't think your finger needs to lose weight, pronto. You don't think your finger should do extra finger exercises to make it thin again. Also, you don't have an entire society pinning your personal attractiveness and social value on how flat your finger is. Whereas I look in the mirror and I know it's swelling, but what I see is fat. And I feel shit.

It's also slack muscles, by this stage. Three months of not being able to use my stomach muscles for anything, even kettle-lifting, else the inflammation gets worse, and of course the muscles are now slack. Some of it is weight gain, too: again, three months of enforced inactivity, you're going to gain a bit of weight. But usually, when I gain weight, I don't look pregnant - I just look like I've gained weight. I know this, and still, when I look in the mirror, all I can see is fat.

I believe so strongly in fighting for a positive body-image, against the tide of thinspiration and photoshopping and all the rest. In the sea of beauty = worth, skinny = good, I cling to life rafts. To this extraordinary, healing article by a physiotherapist on what people really look like. To this Dove ad about Photoshopping faces. To this video about photoshopping a model's body. I limit my exposure to the poisons: I don't buy women's magazines, watch commercial TV, or live in a city with intensive billboards - the less advertising I see, the better my body image. I rant about it, unpacking and unpicking the cultural assumptions from the fabric of my mind, to try keep it from taking hold. I joke about it: when I'm confronted with an array of women's magazines at the supermarket checkout, offering your best ever body! and the perfect bikini body! I mentally translate "body" as "corpse". Suddenly there's a thriving, colourful industry of corpse collectors, instead of seven shelves full of triggers to feel shit about myself.

But with endo, it's so much harder - and harder still when I can't even take refuge in rejoicing at what my body can do, my own pleasure in its strength as I walk or paint walls.

It might seem strange, in the face of severe pain and wheelchairs and daily dependence, even needing help with dressing, to talk about body image.  (Another of the double-standard double-whammies: women are valued by their beauty, but God forbid we actually care about it ourselves. Vanity! Women fussing over their appearance! So shallow! Etc etc etc.) But even holding firm to all my knowledge and all my feminism, some days I look in the mirror and I want to cry. I fill with self-loathing, because I'm fat and that's my fault.  So I couldn't exercise - well, why did I still eat?! I try to get dressed, discarding dress after dress that won't fit, fighting back tears, and start the day feeling sick.

We don't talk about this much in endo, at least not publicly, but I've spoken to other women with endo who also weep over that suitcase of clothes. We swap tips on dress-cuts - babydoll's a winner because it doesn't constrict that oh-so-tender swollen stomach... but also because it hides it. Mostly because it hides it.

I don't want to give in to the self-loathing. As I start the slow progress of recoveirng my mobility, strength, and independence, I don't want to castigate myself for looking fat. But yes, I care how I look. From my abruptly limited wardrobe, I have three dresses that fit me and in which I feel comfortable - only one in which I feel comfortable about how I look. That's not the dress in the photo; it doesn't show my stomach and that's the point, but I can't wear the same dress every day.

I bought the dress in the photo nine months ago, for this summer, when I was well and my body looked rather different inside it. I put it on this morning, looked in the mirror, my face fell, and my eyes filled with tears. I look pregnant, I thought miserably.

And then I thought: I look pregnant. Women look beautiful, pregnant. Pregnancy is a beautiful shape. This is the same shape. Is this a beautiful shape?

No moral here and no conclusion. I can't magically strip the mesh of all society's enculturated views from my brain, however hard I try to fight them. Just a talisman to hold onto.

Sunday, 23 March 2014

Your stubbed toe still hurts

With the pain returning, I'm abruptly debilitated - unable to cook, clean, shop, barely able to walk. I'm reeling with the generosity and help of my friends. I idiotically put pine essential oil in a hot bath and ended up not with soothing heat for my swollen stomach, but burning all over, and too sore to shower or to wash the bath and start again. I bewailed my idiocy on Facebook - and a friend nipped over, made me tea, and cleaned my bath. Another friend messaged twice to ask what she could get me from the shops and went shopping for me. Another came to spend the afternoon with me and support my arm so I could have a short walk in the sun. And then, "I feel rougher than a badger's bottom," says a friend who's ill, "But I can't complain when you're suffering so much."

Oh yes, you can. My endometriosis doesn't magically make everyone else pain-free and illness-free. (If it did, I'd take it on the chin and celebrate; at least it would be for something.) Your flu is still awful. Your period cramps still suck. Your stubbed toe still hurts. My pain doesn't cancel yours out nor does it dwarf it.

I recognise the sincerity and generosity behind that thought: the recognition, even: and I appreciate it. The reverse can be horrific. A friend who's recently lost her husband was given some coping tips by a woman who said they'd really helped when she lost her dog. Sorry, what? You're comparing the loss of a pet to the loss of a husband? You don't do that. But it's not the other woman's grief that the friend objected to, just the comparison.

You can't compare pains. Sometimes people do, trying to find a place from which to relate to something they have no experience of. "Housebound? That must be really difficult, I spent a couple of days on the sofa with flu and it was so frustrating not being able to go out." That's well-intentioned and can be tactless (especially if they make a direct comparison). I try, in those cases, to respond to the intention, which is empathic. I can't expect people to know what endometriosis is like or to know what my experience of it is like, so if they're looking for an in to understanding, fair enough. If it's a very poor in, I can try and explain more, if they want.

But most people, in my experience, err in the other direction, so this is just to say - it doesn't matter how much pain I'm in, your pain still hurts too. And thank you.


(Apologies if the writing here is less articulate than I might wish. Sometimes the endo bit really does sabotage the writer bit.)

Thursday, 20 March 2014

"I'm a bit... sore."

After a charmed two years without treatment and nothing worse than bad period pains and dyschezia, the pain is starting to return. Very slowly, imperceptibly, month by month. Is it  getting worse? And a few months later... It's definitely worse than last month.  And a month later... This is definitely worse. I call it subtle and imperceptible, but I've dropped to the floor in front of my partner when the pain attacked without warning and in privacy screamed out loud. I scrabble to put two coffees down as the pain starts, otherwise I'll drop them. I hate people knowing I'm in pain, but I have to tell my writing students, because I need to sit down while I explain something to them. And I realised, I say to people, "I'm a bit... sore."  But only me and my partner know what that actually means.

“I’m a bit… sore”

In chronic pain, you stop displaying
as you ought.
your nerves report: still the same
excruciating pain, again.

you ought to crumple, double, howl
but instead
your mind goes dead: a trial:
meanwhile, you stiffen, slightly, smile.

the pain will pass, or, it will last, and
all your will
can only still literal screams:
such pain long since exceeds your means

to respond, as you ought,
to what your nerves report










Wednesday, 13 July 2011

The beautiful calm of intense pain

You'd have to be Sherlock Holmes - or the primary care-giver, parent or partner - to spot the tells.  The unnatural smoothing of the forehead.  The thousand-mile stare.  The gracious, unexpected freeze.  The slight smile, even, because smiling releases serotonin, a natural pain killer.  And this is what indicates that the invisible leopard is eating your stomach, tearing out strips of flesh, gnawing inwards, snuffling deeper for the tasty organs.

"You look well!" or, more disconcertingly, "But you look so well!" or worst of all, "You don't look sick!"  Few illnesses come with handy suppurating sores.  But even so, fair enough: punch someone in the stomach and they'll groan, yelp, scowl, grimace, their face crumples, they double over.  That's what pain looks like.  With chronic pain, though, eventually you just stop displaying pain.  You can't scream and scowl your whole damn life, you know.

I'd forgotten all this, so I'd forgotten to take ibuprofen before I left the house, even though my period had started. The pain only really hit when I reached the coffee shop.  Today's plans: coffee-shop planning of my week; shop for presents; pop over to my friend B's to deliver presents to her kids; clean house; dinner out.  Today's metaphors: two large millstones slowly grinding my stomach between them; an invisible leopard eating my belly; a hot tide rushing up and down my leg marrow.  It's immensely distracting: brain, interrupted.
"Coffee?" says the waitress.
One, two, three. Why's she asking? I'm here every Sunday, and often in between, they all know me, I only ever have coffee.  One, two, three.  "Yes."  One, two, three. "Please."  One, two, three.  Smile.
She gives me a quizzical look, but I can't see how to explain that the invisible leopard eating my stomach is responsible for the odd delays.

I sit, very still, and wait.  I've taken the ibuprofen, now.  It will start working soon.  The beautiful calm of intense pain, I think.  How it interrupts one's thinking, every natural chain of thoughts and flowing intellectual flight cut into snippets, processing power swamped by overwhelming sensory stimulation, attentional blink - my esoteric musings are cut short: fuck!  That bloody hurts!

My coffee arrives.  I can't lean forward to reach it.  Shift my chair? Pain level: 8.  Duration: 3.  Visibility: 1.  Nah.  Shift the table instead.  Pain level: 5.  Duration: 3.  Visibility: 1.  I shift the table, but coffee slops into my saucer.  Shit.  Now I have to cross the restaurant to get a napkin.  Pain level: 7.  Duration: 30.  Visibility: 10.  It's like the bloody shipping forecast in here.  Poor; losing identity later.

I can now reach my coffee.  Each time I lift it, carry it through the air to my lips, and return it, I'm quietly screaming inside.  Stuff it, not worth it.  I'll drink it in half an hour, when the pain killers set in.  I also can't lean over the table to start my planning.  I reach into my mental timetable to start adjusting my already crammed schedule by half an hour... Ah.  Right.  Revised plan for the day: sit still for half an hour, then plan.  Apologise to B re visit, presents, kids, etc.  Aplogise to partner re house.  Dinner out?

So I sit.  A smooth forehead, a dreamy gaze, a Mona Lisa smile.  (Plus invisible leopard.)

Monday, 4 April 2011

Progesterone intolerance spotlight: depression




• affects 1 in 5 women
• likely if you get bad PMS
• damaging & avoidable
Effects include depression, weeping fits, irritability, aggression, paranoia, guilt, panic attacks, loss of enjoyment, loss of inhibition, self-loathing
Progestogens are in...
• the contraceptive pill
• the contraceptive injection
• the contraceptive implant
• the Mirena coil
• some HRT
It's a key treatment for endometriosis.

This series of posts highlights the effects of progesterone intolerance, from my personal experience. They are not medical advice.
Medical professionals: it's important to understand the severity of progesterone intolerance and the damage it can do.
If you think you are progesterone intolerant: avoid taking progestogens if possible and find a sympathetic doctor. If your doctor dismisses your symptoms, change doctor.
sorrow   hopelessness   total perspective vortex
Sorrow
When someone close to you dies, or when someone you love deeply breaks your heart, the sorrow comes wherever you turn. You open your eyelids to your loss in the morning. It's waiting in the mirror when you raise your face from the basin. You open your wardrobe and it stops you dead, staring into the folds of clothes, numb with sadness. You lift your tea and tears clog in your throat, stopping you drinking. You rest your fork, you put down your pen, you turn to cross a road, and another wave of grief and loss floods you.

The sorrow of depression is the same.  Waves of sorrow, grief, and loss hiding in all the folds of your day.  But sorrow about what?  Like the anxiety of paranoia, it finds something to attach itself to - and in my experience, with more success than the anxiety. Few human hearts have no secret griefs. And grief is proportional only to itself.

If you already get severe PMT (and that's likely, because it correlates with progesterone intolerance), you're probably experienced at separating out the actual issue and the massive sorrow.  I use PMT as an emotional audit: okay, those things are clearly the issues, so I shall deal with them - after the PMT has gone. Jot it in my diary for three days' time, emotional to-do list. But what if the feeling doesn't go for three weeks? Two months? Years?  And you know that it's not going to get better. Ever.

Hopelessness
Alongside the sorrow, comes a feeling that the lights have been switched off in your life. Your job - an empty pursuit, an endless repetition on the way to retirement and death. Your relationship - loveless, an enactment of norms. Your finances - desperate, because what you have now is not enough and there will never be more. This day - hollow and scraped clean of meaning, only a list of things you need to do, or that you're supposed to "need" to do; you can see from this moment, walking alongside iron railings, to the moment you get home, and the kettle put on, and tea made, and then you will drink the tea, and then you will have finished the tea, and then you will do something else. Make supper, perhaps. So you will make the supper, and then eat the supper, ash in your mouth, and then you will have eaten the supper. Perhaps you will watch something on TV. It will make no difference to your life, but you will watch it, and then you will have watched it, and then you will go to bed. Perhaps you will go out for a drink; the putting on of the make-up, the buying of the drinks, the drinking of the drinks, the drinks are now drunk, and you go all the way back home and take the make-up back off and you are where you started, and nothing has changed.  And nothing will change; nothing will ever get better.  Your heart will never hurt less than it does now.  Your dreams will stay the dead seaweed they are today; no waves will wash in to bring them back to life.  Your every hope for the future, for the home or the love or the job or the book, is cut dead.  The lights won't come back on.  And what's more, this isn't some depressive mood, some momentary gloom: this is the absolute truth about life.

Total perspective vortex
 2 “Meaningless! Meaningless!”
   says the Teacher.
“Utterly meaningless!
   Everything is meaningless.”
  3 What do people gain from all their labors
   at which they toil under the sun?
4 Generations come and generations go,
   but the earth remains forever.
5 The sun rises and the sun sets,
   and hurries back to where it rises.
6 The wind blows to the south
   and turns to the north;
round and round it goes,
   ever returning on its course.
7 All streams flow into the sea,
   yet the sea is never full.
To the place the streams come from,
   there they return again.
8 All things are wearisome,
   more than one can say.
The eye never has enough of seeing,
   nor the ear its fill of hearing.
9 What has been will be again,
   what has been done will be done again;
   there is nothing new under the sun.
10 Is there anything of which one can say,
   “Look! This is something new”?
It was here already, long ago;
   it was here before our time.
Ecclesiastes 1:2-10
"For when you are put into the Vortex you are given just one momentary glimpse of the entire unimaginable infinity of creation, and somewhere in it a tiny little marker, a microscopic dot on a microscopic dot, which says 'You are here.'" - Douglas Adams, The Restaurant at the End of the Universe

Alongside depression comes this unshakeable, absolute conviction that, finally, you are seeing clearly.  The scales have fallen from your eyes.  The fundamental meaningless of everything is revealed; the total perspective vortex shows you the universe and says, "You are here."  The hollow futility of ads blasting fashion and must-haves, the pointlessness of all contemporary pursuits, the emptiness of days which fill themselves with these copied ruts - anyone who denies the truth of this is suffering wild delusions.  You are seeing the true heart of being.

I don't know if there's any way to shake that conviction, besides the experience of having been there before, and come out the other side, and watched life take back on its lifeblood of light, meaning, beauty, and purpose. Again, the seaweed: lying so blackened and dead, a wasteland, but when the tides come back, it will dance in the sparkling water among shining churning grains of sand, the magical underwater world of moving fronds and fish returns.  The dead seaweed isn't the truth of the sea or the coast.  But by God, at the time, it feels like it.

The sorrow made me want to take the knife and hold it to my wrist.  The hopelessness stripped my future of any option beyond that stark choice.  But it was the the total perspective vortex that made me press down, because I believed that what I saw was the truth of the world, that all the happiness and joy I'd ever had was just an illusion.  But actually, of the whole wonder of the sea, all I was seeing, all I was able to see, was the dead seaweed.

'Cheer up!'
Cheer up! Buck up! Pull yourself together. Get a grip! Stop feeling sorry for yourself. Have I ever told you how lucky you are?

Anyone who's suffered depression will recognise how unhelpful these sayings are. It's worth remembering that people are trying to help, mostly - but certainly with chemical depression or hormonally-induced depression, that simply doesn't work. It's like telling a person with a broken leg to go for a jog.  And it needs to be recognised as that: it is the hormones creating this state. Like the paranoia, like the sorrow, it is a hormonal, chemical reaction. It is not circumstantial depression.  Circumstantial depression may react to a change in circumstances.  Hormonal depression is being pumped in by the hormones, and all the good will and positive thinking in the world is no good while the source, the hormones, are still pumping away.   You don't try to stop a flood by imagining things dry; you find the source and stop that.

I have list upon list upon list, from the dark days, of How To Be Happy and Happy Things To Do and Things That Make Me Cheerful.  I painstakingly recorded, through crippling grief, things that I remembered used to bring me pleasure, and tried to do them, to fix myself.  I couldn't fix myself - because I wasn't broken.  My attempts only brought me fresh grief, because the things I most loved brought no happiness, and as I ticked off my lists, I crossed off one by one the things I used to love - until even writing, even reading, my two greatest joys, were as helpless to help me as the rest.  When you are trying that hard to be happy and people tell you to just be happy, how lucky you are, how you just need to pull yourself together, yes, that is difficult.  You can't.  Broken legs can't jog.  One of the posts still to come will talk about how you can help yourself cope with progesterone intolerance, in more detail, but for now, rest on this: it will pass; it is no more the truth about the world than dead seaweed is the truth about the sea; it is not your fault, your weakness, or your lack - you are strong.

Depression is an effect of progesterone intolerance. The effects of progesterone intolerance can damage lives, completely pointlessly. This affects 1 in 5 women, so please help raise awareness by sharing this post - and please feel free to share your own experiences.

Music: Hello by Evanescence

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Saturday, 26 February 2011

Progesterone intolerance: Loss of enjoyment




• affects 1 in 5 women
• likely if you get bad PMS
• damaging & avoidable
Effects include depression, weeping fits, irritability, aggression, paranoia, guilt, panic attacks, loss of enjoyment, loss of inhibition, self-loathing
Progestogens are in...
• the contraceptive pill
• the contraceptive injection
• the contraceptive implant
• the Mirena coil
• some HRT
It's a key treatment for endometriosis.

This series of posts highlights the effects of progesterone intolerance, from my personal experience. They are not medical advice.
Medical professionals: it's important to understand the severity of progesterone intolerance and the damage it can do.
If you think you are progesterone intolerant: avoid taking progestogens if possible and find a sympathetic doctor. If your doctor dismisses your symptoms, change doctor.

Loss of enjoyment. It sounds like nothing. An "Oh, dear" at most. For me, this is by far the worst effect of progesterone intolerance – and the most destructive.   Progesterone inhibits reward responses, which give us a sense of pleasure or enjoyment.  Without that, making decisions is extremely difficult (not to mention risky) and life loses its purpose.  Trying to 'fix' that, without knowing what's actually wrong, can destroy one's life.

Progesterone and oestrogen are effectively the two halves of a woman's cycle – oestrogen builds in the first half, up to ovulation, and then progesterone takes over from ovulation to your period. Research into rewards and the menstrual cycle found that progesterone lowers women's reward responses, the "yes!" we get from doing something we like or are addicted to. 'Woohoo!' cried the researchers. 'We can use it to stop women shopping and taking drugs!' But as Emily Anthes's article notes,
If progesterone is blunting the effects of rewards, it could spur women to engage in more pleasurable activities–such as impulse shopping–just to generate the same 'high''.
Amidst the compulsion to see women as compulsive shoppers and beings whose behaviour can and should be controlled, an intensely important issue is entirely overlooked: progesterone lowers women's abilities to experience neurological rewards.  When you are progesterone intolerant, this can become severe and turn into total loss of enjoyment, or "anhedonia".

The reward response is the interior "yes!"   How much one relies on that interior "yes!"  To know you're enjoying an evening.  To know you're full.  To know the caffeine's hitting the spot.  To know the wine is having an effect.  To know you like your friends.  To know an idea's good, to know a plan is worth pursuing and should work.  Meanwhile, the interior "NO", that note of warning, is unreliable: sounding more and more often, more and more loudly, ringing the bells of anxiety, guilt, fear, but could be, probably is, paranoia.

It's astonishing how little can be objectively decided, how reliant we are on that interior "yes" and "no". Perhaps it should not be so astonishing, because whether we like it or not, emotions are how we make decisions:
The limbic system forms an emotional core of the human nervous system ... The limbic brain has retained its function as the decider of valence [during the evolutionary process]. What the cortex does is provide more detailed analysis about what is going on in the world so that the limbic brain can decide what is important and what to do. (Cytowic, 1994: 157, 168)
It's so strange to try function without that interior guidance, without the "yes!" and closing your ears to the constant misfiring "no", like being a computer trying to pass the Turing test, constantly needing to check in with real human beings, who have access to proper feelings, to check you're doing it right.  I need it right now, writing this, to know which personal painful excerpts to include to best illustrate this ("yes") and which are too personal ("no").  And some are exceptionally painful and personal: lacking access to that "yes!" can be disastrous, because that's how we judge things are working.

The food's not working, so you have some more. The wine's not working, so you try another.  The coffee's not working, so you try another.  The relationship's not working, so...  The degree isn't working, so...  The house isn't working, so...  The job isn't working, so...  The natural human response, if something isn't working and is bringing you no enjoyment and no reward, is to change it – but it's working just fine.  It's you that's not "working".  The natural human response, if you are without enjoyment and reward, is to look for it – but it is nowhere to be found, nothing brings it, and you're not yet ready to give up on life, not quite, so you keep trying.  The fruitless pursuit of pleasure can be immensely damaging.

The fact is, the food won't make you satisfied, just full.  The coffee won't make you excited, just jittery.  The wine won't make you happy, just drunk.  The music won't swell your soul, the scenery won't lift your spirits, the hug won't make you feel loved, the evening out won't bring you fun, the joke won't make you laugh, your work won't bring you satisfaction.  That sounds like a desolate list.  It may be horrible to experience, but it is good to know.  Nothing is actually broke, so don't fix it – don't break everything, trying to fix it.

This is easier to do when you know what you're experiencing. If you don't know nothing's broke, if you don't know you're progesterone intolerant, if you don't know your reward responses are being blocked, you think it's all real.  From the age of 19 to the age of 25, that was my reality.  I broke things.  I remember the university coffee shop, sitting in coffee steam and cigarette smoke, trying to piece my reality together out of the fragments of everything I'd broken, trying to make sense of it and stitch my thoughts and myself back together word by word in my notebook.  I was so, so unhappy then.  And it breaks my heart to think it was all so unnecessary, just down to the pill, which I wasn't even taking for contraception, but because my doctor had convinced me it was keeping me stable and that without it I would be even crazier, more manic, more chaotic, instead of magically restored to my sane, calm, happy self within a month.  Instead, I flailed my way through hell, a hell increasingly of my own making, breaking everything in an increasingly desperate attempt to fix it.

You see, when you're anhedonic, you can't feel anything good.  Positive emotions just don't make it through.  But you can feel negative emotions.  And eventually, it's a relief to feel anything at all.

A year ago, I was in the grip of the same loss of enjoyment, anhedonia, but this time with the benefit of knowledge.  I drove to work with the wintery sunlight glistening through mist to gleam on water and catching on twigs, and looked it without response, numb.  The traffic crawled through perfect beauty and stopped; I looked at it and saw a field, a tree, some water.  The car in front would start moving and I would still sit, trying to find the will to put the car back in gear.  I had no reason to.  But I knew, this time, how to live like this: I knew how to stitch myself together with words in my notebook:
So here's the plan.  Hard-won experience tells me that however devoid of purpose life may feel, it does regain meaning at some point, so the thing is to keep the home fires burning – keep things in order & not contribute to any destruction.  So right now I can't imagine being able to write my novel, and plans for a holiday feel remote and blank, and the idea of wanting to earn money for anything in the future is utterly lacklustre because all the pull the future held seems to have vanished, snipped off.
I can't see or feel any purpose.  But I have to believe there is purpose.  And keep working towards my goals so that when meaning comes back, there's a well-kept, well-running, bright life waiting for it, in better condition than before.
There are things I can do by rote.  If this feels a bit like dot-to-dot of How To Live – well, that knowledge was damn hard won, so I'm not going to scorn it.
I wrote myself lists on how to live and followed them.  Lists of work, lists of housework, lists of how to rest, lists of how to socialise.  I put my head down, bereft and purposeless in a life devoid of meaning, and followed the lists.  After a few months, I had the Mirena coil taken out.  I remember the exact moment I first experienced enjoyment again.  I was walking into town to meet a friend, with the same dull list-following sense of duty that had characterised the last five months, and walked past All Soul's College in Radcliffe Square.  The golden gate caught the last of the sunlight, the green lawn of the quad glowing behind it, and my heart gave a tiny flutter, a butterfly twitch, no more.  "That's beauty," I thought, dumbfounded.  "And I responded.  I actually felt it.  I felt enjoyment."

Loss of enjoyment (anhedonia) is an effect of progesterone intolerance. The effects of progesterone intolerance can damage lives, completely pointlessly. This affects 1 in 5 women, so please help raise awareness by sharing this post - and please feel free to share your own experiences.

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Cytowic, Richard E. 1994. The Man Who Tasted Shapes. London: Abacus.
Thanks to Emily Anthes on Wonderland for reporting progesterone reward research
Music: Into the West, Annie Lennox
Painting: Melancholy of a Beautiful Day, Giorgio de Chirico

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