This is NOT in my head

Summary

Endometriosis is not hard to diagnose, but often missed. Why? Women are twice as likely as men to have their pain diagnosed as psychogenic (in their head), their illnesses are rated as less serious, they’re less likely to be sent for tests, and up to 50% are misdiagnosed with depression. The gender bias in medicine starts right in the lab, meaning women’s illnesses are little researched, making accurate diagnoses and good treatments more difficult. The psychological test scores for psychogenic pain and chronic pain are identical – so there’s no reason to choose psychogenic pain, except preference. Both doctors and women with endo need to be aware of this baggage, to avoid it, and of the valid emotional toll of endometriosis.

Endo is not hard to diagnose

The British Medical Journal has just put endometriosis on their front cover: “Endometriosis: How to spot a condition that is easily missed” (26 June 2010). But why is it easily missed?

Endometriosis isn’t actually hard to diagnose. For all the elaborate table of symptoms, those symptoms are predominantly cyclical – a dead giveaway. It’s incredibly common – 1 in 10 women have it, so you’re hardly dealing with some arcane rarity. (Vigano, 2004) And you don’t have to wait for a laparoscopy – most endo symptoms respond to progesterone treatment (the oral pill or Mirena coil, both easily available) within 3-6 months. That’s a bit shorter than the average diagnosis delay of 8 years. (Ballard, 2006.) So why’s it missed?

In their research on diagnosis delays, Ballard et al found five main reasons: at the patient’s level, normalising symptoms and embarrassment; at the medical level, doctors normalising symptoms, symptoms being suppressed sometimes by hormones, and diagnostic investigations that don’t actually diagnose endo (for example, ultrasounds). For patients, the biggest issue was doctors normalising their symptoms:

Indeed, when asked to identify the least helpful aspects of their treatment of pelvic pain, the majority of women cited their perception of doctors’ disbelief surrounding the genuineness or severity of their symptoms. Many recalled being told by the family doctor that because their pains were “just normal period pains” this was something they had to cope with. They reported being advised to make lifestyle changes, such as increasing exercise levels, and being prescribed nonsteroidal antiinflammatory medication and analgesia. The impact of this advice, when considered alongside the women’s lack of knowledge about “normal period pain,” led many to question their experiences of symptoms, with the majority stating that at some point they had felt that they were “going mad” or that the “pain was in my head”.

These women’s “perception of doctors’ disbelief” might not be so wrong. Women are routinely disbelieved about their pain – and the stats are scandalous.

Women are twice as likely to be diagnosed with psychogenic pain

Psychogenic pain has a mental cause,
not a physical cause; somatic pain has a physical cause.

Bernstein and Kane’s 1981 research took 8 simulated cases and varied the complaint, the gender, and whether or not the patient mentioned a personal problem. 253 primary-care doctors were given 2 different cases each to diagnose. The results were striking.

Of the phsycians, 25 per cent believed women were likely to make excessive demands on physicians’ time, although only 14 per cent believed this likely of men (p<0.01); women’s complaints were judged more likely to be influenced by emotional factors (65 per cent versus 51 per cent in men, p<0.01), and were identified as psychosomatic more frequently than men’s (21 per cent versus 9 per cent).

In other words, as a woman, you’re almost twice as likely to be thought a time-waster and more than twice as likely to be told the problem’s in your head – with no difference in the medical information that the doctor’s given. Keeping mum about your personal life won’t help, either:

Although non-expressive women [those who don’t mention a personal problem] were more likely to receive a psychosomatic diagnosis than non-expressive men (14 per cent versus 2 per cent, p<0.01), expressive men and women were almost equally likely to receive psychosomatic diagnoses.

If you take a man and a woman with an identical complaint and neither mention personal problems, the woman’s nine times more likely to be told it’s in her head. “The effects of these differences on quality of care remain to be determined.” – well, quite. And all this was with complaints that both genders could have – not “women’s troubles”. Illness in women is routinely rated as less serious than illness in men.

Women are rated less seriously ill

In 1992, eleven years later, Wilcox ran a similar study on the effects of patient age, gender, and depression, on 88 advanced medical students, this time on audiotape. The “patients” all reported the exact same symptoms. The three variations were their age (32 or 67), their gender, and whether they also presented symptoms of depression. The medical students then filled in questionnaires about these “patients”. The researchers expected an age bias, which didn’t appear – but again, the results split dramatically over gender:

Females were rated less seriously ill, less likely to require laboratory tests, and more likely to receive medication than males. Among depressed patients, counseling and reassurance were more likely for females, and a nonpsychiatric consult was more likely for males.

30-50% of women are misdiagnosed with depression

In 1981, the research showed that women were twice as likely to be diagnosed with psychogenic pain – ie. nothing physically wrong, but some psychological cause. Seventeen years later, little seems to have changed. Floyd’s 1998 paper in Social Science and Medicine draws on a range of research and suggests that up to 50% of women are misdiagnosed with depression.

This difficulty, it says, “is considerably enhanced when women have physical diseases characterized by symptoms that resemble a major depressive disorder.” For example, changes in sleep patterns, appetite, energy, and interest in sex are all symptoms of depression – but are also side-effects most women with endometriosis would recognise. This is compounded by treatment: “In addition, medical treatments may induce symptoms that are misdiagnosed as affective distress.” Most of the treatments for endometriosis are hormonal and almost all include, in their list of side-effects, depression, mood swings, and weeping fits.

So the symptoms may overlap with depression and the treatment may make it look like depression, but why especially so for women? “Multiple causes contribute to an enhanced likelihood of misdiagnoses in women, including physicians' androcentrically orientated medical training and the two-to-one female-to-male ratio of depression treatment.” This two-to-one ratio is often seen as proof that women are more prone to psychological issues. That’s not true: “if all types of mental disorders are collapsed into one broad category” writes Floyd, “men and women display similar rates.” And finally, “medical misdiagnoses of physical conditions may induce depressive reactions in female patients.” Chronic pain and being told it’s all in your head is, unsurprisingly, an unhappy combination.

Gender bias in medicine

This “androcentrically oriented medical training” – ie. oriented towards men – is still rife, according to Hamberg’s 2008 paper. According to Nature (18 March 2010), it runs through every stage of the medical process, right from the labs. Females, whether mice or women, are simply not studied.

The lack of female participation, which extends from basic research in animals to clinical trials in humans, has obvious consequences for women, not least a paucity of effective drug treatments for diseases that predominantly affect them.

It’s often assumed that females are “just too complicated”, but when that’s examined, it doesn’t hold true: “in common tests used to measure responses to pain, data from female mice are no more variable than those from males”. But the variability that does exist is essential; it simply cannot be brushed under the carpet as “inconvenient”. The importance of this can’t be underestimated: some treatments ‘have severe side effects in women that are not seen in men’ and it leads to ‘a paucity of effective drug treatments for diseases that predominantly affect [women]’ – or only affect women, such as endometriosis.

As an exceptionally common and extremely debilitating condition, endometriosis has been barely researched and is still little known, even among medical professionals. Discredited myths stay in circulation (like the “have a baby and it’ll get better” nonsense), few new treatments are developed, and physically ill women are told they’re probably just depressed.

Psychogenic pain and chronic pain look identical

So how would a doctor tell if it’s chronic pain or psychogenic pain? The 1981 collection of papers, Chronic Pelvic Pain in Women, addresses Chronic Pelvic Pain Without Pathology (CPPWOP) – ie. without a known cause – and discusses how to tell if this is psychogenic.

Its description of psychogenic indicators and psychogenic patients are strikingly hostile. Even more startling, the irritated descriptions correspond one-for-one with chronic pain factors, as outlined by Steege (1998). As the latter was writing in 1998 and Chronic Pelvic Pain in Women was published in 1981, its authors could have been forgiven for not knowing this – but in the opening pages, Renaer quotes Merksey:

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. (15)

In other words, the test scores of people with psychogenic pain are identical to the test scores of people with chronic pain. The test scores tell you nothing. There is no reason to choose a diagnosis of psychogenic pain except bias or the insane belief that medical knowledge is somehow complete. Leave aside my rage that this knowledge didn’t find its way into the rest of the book. This has more important implications.

First, psychological test scores are not a reliable indicator for psychogenic pain: they don’t distinguish between psychogenic and chronic pain. Second, chronic pain has therefore not been “ruled out” until all possible causes of chronic pain have been investigated. And as we’ve seen, women are less likely to be sent for medical tests. Even then, medical knowledge is incomplete – so what is shown is that no known cause of chronic pain has been identified. It does not necessarily follow that it is psychogenic pain. Third, it demonstrates the massive emotional toll of being in chronic pain – that your test scores would show up as if you were neurotic, and yet this is only the effect of unremitting pain. The affect, in fact, of unremitting pain.

Implications

• Women are much more likely to be diagnosed with psychogenic pain or depression, so both doctors and women should be suspicious of these diagnoses.

• Women are more likely to have their illness treated lightly and less likely to be sent for tests, so both doctors and women should push for thorough investigations.

• No doctor and no woman should accept a diagnosis of “psychogenic pain” until every physical cause has been ruled out.

• Even then, a psychogenic diagnosis has to remain provisional. Little research is done into diseases that affect only or predominantly women, so medical knowledge is more than usually incomplete here.

• Chronic pain takes a massive psychological toll. Getting professional help to deal with that does not imply your pain is in your head.

• Panic, stress, and anxiety are known to increase the amount of pain someone feels – managing these is an effective form of pain management. Managing these does not imply that your pain is down to your being stressed or anxious!

• Some anti-depressants also act as pain relief. When a doctor prescribes anti-depressants as pain relief, this can be misinterpreted or not properly explained. Doctors – explain; patients – ask.

• Most endometriosis treatments are hormonal and the side-effects are typically hormonal. They can include depression, paranoia, irritability, low self-worth, loss of enjoyment, weeping fits, and suicidal thoughts. It is very difficult, but nonetheless important, to distinguish hormonal side-effects from your own feelings, and to not blame the pain on either. If you usually have severe PMT, you might have more experience of distinguishing hormones from your own emotions. Try to keep records so you can see the cycle, ask good friends to help you work out the difference, and remember what you’re like when you’re not on treatment.

And remember: it’s endo. It’s NOT in your head.

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Bibliography

Ballard, Karen; Lowton, Karen; Wright, Jeremy. “What’s the delay? A qualitative study of women’s experiences of reaching a diagnosis of endometriosis” in Fertility and Sterility. 86:5, November 2006.

Bernstein, Barbara; Kane, Robert. “Physicians' Attitudes Toward Female Patients” in Medical Care. 19(6):600-608, June 1981.

Engemise, Samuel; Gordon, Cerys; Konje, Justin C. “Endometriosis: How to spot a condition that is easily missed” in British Medical Journal. 26 June 2010: 1414–1415. (BMJ 2010;340:c2168)

Floyd, Bonnie J. “Problems in accurate medical diagnosis of depression in female patients” in Social Science and Medicine. 44:3, 1997: pp. 403–412. (PMID: 9004374)

Hamberg, Katarina. “Gender bias in medicine” in Women's Health. 4:3, May 2008: pp 237–243.

Hayden, Erika Check. “Sex bias blights drug studies” in Nature. 464, 18 March 2010: pp 332–333.

Renaer, M. (Ed.) Chronic Pelvic Pain in Women. Berlin, Heidelberg, New York: Springer-Verlag. 1981.

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.

Vigano P, Parazzini F, Somigliana E, Vercellini P. ‘Endometriosis: epidemiology and aetiological factors’ in Best Practice & Research Clinical Obstetrics and Gynaecology 2004;182:177–200.

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