The undertreatment of women in pain.

Pain in general is under-treated, but recent studies have revealed that doctors and nurses are even more likely to underestimate women's pain. This sad state of affairs has arisen from a tangle factors that are not easy to separate: the cultural forces that influence our perception of pain and our response to women who report it, combined with the documented reality that women both feel more pain than men, and live with a wider spectrum of chronic pain conditions. Body difference accounts for some of this, but women's pain is also shaped by hormones--and history.

About one in five Canadians live with chronic pain, according to recent research. In the United States, a 1999 Gallup poll reported that 46% of American women say that they have experienced daily pain, compared with 37% of men. A recent New York Times supplement devoted to women's health made pain the focal issue. One of the featured articles cites a report published last year in The Journal of Law, Medicine and Ethics which found that women were more likely to have their pain reports discounted as "emotional" or "psychogenic" and, therefore, "not real". And when a woman reported her pain level as "eight out of ten", a doctor translated this as a six out of ten. Is this because women tend to be more willing to report pain? Is it because we expect the gender that experiences menstrual cramps and childbirth to be braver about other kinds of pain? Or is the under treatment of women just a harsher version of a more widespread reluctance to acknowledge pain in the first place?

Pain is science's bugaboo. It's so invisible and subjective; pain is what the patient says it is. Doctors and nurses may not want to be told by a patient how she feels, or how much painkiller she needs. And if men don't complain about pain, the opposite can result, with doctors assuming that they feel more pain than they admit. A number of studies have shown that men will receive more painkilling medication than women for the same condition. It may be that taking the macho route and saying "Doc, it's nothing--just a flesh wound" will get us further than an accurate description of how we feel!

Pain is highly variable, not just according to gender, but among individuals. A researcher in the genetic aspect of pain, Dr. Allan Basbaum, compares the variability of pain from person to person to the way we respond to a painting. One person will look at a canvas by Mondrian and see only stripes of color, while another will be deeply moved. "Pain is a perception," says Basbaum. This has made pain a moving target for science because it is so hard to observe, measure and treat. It also reveals how many cultural values and stereotypes come into play when medicine goes about treating pain.

In the course of writing my book, Pain: The Fifth Vital Sign (Random House), I spent five years talking to pain experts and people who live with chronic pain. Since women are two to three times more likely to suffer from migraines, and six times more likely to have fibromyalgia (a chronic illness that is marked by fatigue and generalized musculoskeletal pain and sensitivity), I spent lots of time talking to women in pain. A familiar pattern emerged--years of exasperation in the search for sympathetic, informed treatment. One woman in her seventies, Stella, suffered terribly from back pain related to osteoporosis and a fractured vertebra. But Stella was a "good sport" who "hated to make a fuss". As a result, even her kindly family doctor couldn't "see" her pain, and she would come home from her appointments with him discouraged and still in severe pain. She had to break down in tears in his office in order to get some action. She was lucky--many doctors view tears as evidence of an "emotional issue", rather th an the by-product of living with daily, grinding pain.

Let's face it--there are many doctors who just don't want to hear about pain. It's hard to fix, it challenges their ability to cure, it takes time and patience, and it calls for a level of empathy that medical training does not teach. Most importantly, doctors generally receive next to no instruction in treating pain when they go through medical college -- perhaps three hours in the course of five years. Changes are now being made to medical curricula, but very slowly. The University of Toronto, which has just established a new Centre for the Study of Pain, held a "Pain Week" curriculum last year to help educate students in nursing, dentistry and medical faculties.

Among the women I spoke with who came to some sort of accommodation with their pain, the best results came from taking an active role in their pain management, and using a combination of approaches: the right medication at the right dosage, prescribed by a doctor who understands chronic pain, combined with self-directed therapy, and a deeper awareness of what calms or exacerbates their pain.

Hormones, for instance, play a huge role in women's pain. Women experience higher levels of pain just prior to their period, and migraines are often linked to the menstrual cycle as well. The good news is that after menopause, migraine in women usually tapers oft But to add another black mark to the growing list of potential health risks for hormone replacement therapy, research has found that women who take HRT report more jaw and neck pain.

Pain that affects one part of the body can somehow increase pain levels in other areas, or even increase a general sensitivity to pain. Women with severe menstrual cramps, for instance, will sometimes tend to have more muscle pain all over. The presence of endometriosis can also make the pain of kidney stones worse -- but doctors may not think to put these two factors together in a diagnosis. Nor do doctors typically bother to ask questions about menstrual cycles or menopausal symptoms if a woman comes in with a pain problem.

One young woman I interviewed, Lan, suffered from severe Complex Regional Pain Syndrome, a hard to treat neuropathic pain that is the result of damaged nerves. A minor fall at work led to a dozen years of excruciating leg and knee pain. She was lucky enough to find a doctor who specialized in this type of pain, who gave her appropriate medication. But the biggest surprise came when Lori got pregnant with her first child, reduced her pain medication, and discovered that the shift in hormones helped mute her pain. So did breastfeeding. The body has its own natural painkilling resources, intimately linked with sex hormones. So sometimes being female can work for us.

Another woman I interviewed was Alice, a fifty year old writer and editor who suffered from lifelong depression, and had developed fibromyalgia. Although many doctors consider fibromyalgia an overly vague constellation of symptoms (disrupted sleep, muscle pain, fatigue), Alice was lucky enough to track down a rheumatologist who specialized in this condition and instantly recognized her symptoms. She helped her address and manage this exasperating form of chronic pain. For Alice, having a clear diagnosis was useful; after years of dismissing her pain as a kind of neurotic by-product of depression, a diagnosis made it real, and something she could try to manage. By accepting the limits imposed by fibromyalgia, she began to reshape her life into a regime that gave her more control over the pain. She learned that the right amount of exercise was crucial to managing her pain, along with regular yoga.

With women, we are too quick to assume that some level of unhappiness or frustration lurks behind a painful symptom. Sometimes it does, in fact. Pain always has a story to tell. But doctors often forget that depression and anger are often the product of chronic pain, not the precursors of it.

A third woman whom I spoke with, Debbie, was a young woman in training to become a paramedic. A fall on the ice left her with back pain that led to seven frustrating years of doing the rounds--from "back specialist" (who gave her exercises that only worsened the pain) to physiotherapist to "needle jockeys" (who administer local nerve blocks) to psychologists and GPs. Nothing helped. Even her mother was of the opinion that getting married and having children would solve her problem. A fit and optimistic woman, she became increasingly angry and depressed. In desperation, she signed up for a workshop on the Feldenkrais technique, a system of gentle exercises designed to integrate mind and body, and re-tutor the body damaged by injury or chronic pain. Her back pain began to improve as a result of the exercises. Just as important, Debbie had regained some sense of control over her pain, rather than fuming at the doctors who couldn't fix her.

The pattern with all three women was familiar: a reluctance to seek treatment in the first place, because they were either habituated to a form of "life" pain (such as depression) or they were the type to "tough it out". When the pain wouldn't go away, they then made pilgrimages from doctor to specialist, hoping for the magic bullet that would fix them. Alice and Lori were lucky enough to eventually find doctors who could help them. Debbie stumbled onto a complementary therapy that worked for her. In every case it took enormous patience, persistence and courage to get on with life, and to negotiate with daily pain.

But now that science is discovering the gender divide in pain, there may be hope for better treatment in the future. The days when you and your brother, son or husband take the same little red Advil for two different sorts of pain could be replaced by medication custom-tailored to gender and genotype. In the future we'll likely have his and her painkillers, and our ability to harness endogenous pain resources such as cytokines and endorphins will use the body's own painkillers to greater effect.

So this is a good news/bad news report. Women with chronic pain are not likely to be "fixed" with one visit to their friendly GP. They have to take an active role in their own treatment, finding strategies that help, both inside and outside the medical realm. They can expect to spend many hours in a number of waiting rooms before they find someone both sympathetic to pain, and trained in the details of treating it. Although they risk being dismissed as complainers, when the doctor asks "are you in pain?" women must speak out loud and clear. Remember, no one is more of an authority on your pain than you are.

Pain Resources

International Association for the Study of Pain,

[phone]

www.iasp-pain.org

American Pain Society,

[phone]

www.ampainsoc.org

American Chronic Pain Association,

1-800-533-3231

www.theacpa.org

American Pain Foundation,

1-888-615-PAIN

www.painfoundation.org

American Academy of Pain Management,

[phone]

www.aapainmanage.org

Chronic Pain Association of Canada,

1-866-470-PAIN

www.chronicpaincanada.org

University of Toronto, Centre for the Study of Pain,

[phone]

www.utoronto.ca/pain

For more information on pain resources, see:

www.marnijackson.com

THE PAIN EXHIBIT: SEEKING ARTISTS WITH PAIN

A touring museum art exhibit front artists with chronic pain is being planned for the Fall of 2004. Artists with chronic pain are encouraged to submit slides or photos of their art. For more details, visit www.painfoundation.org or call [phone].

RELATED ARTICLE: Recent Studies on Menopause and Pain

by the Editors of AFI 

Better with Age

Many things improve with age -- but pain? New studies indicate that specific kinds of pain relief appear linked with the aging process. While joint pain increases with age in bath men and women, abdominal pain and tension-type headaches appear to decrease with age in women. As well, migraine headaches and facial pain may diminish significantly -- for some women, altogether -- after menopause.

Since these particular forms of pain also seem to peak for women during their reproductive years, scientists believe hormones may be the key factor. Studies have shown that women experience significant changes in their headache and migraine patterns based on changing levels of hormones within a regular menstrual cycle, and, particularly, during fluctuations in hormone levels, such as at first menstruation, pregnancy and menopause.

More research on the differences in chronic pain between men and women, and between the different stages of a woman's life, needs to be completed to offer a more refined picture of the interaction between a woman's cycles and her pain conditions.

HRT and Pain

Preliminary research has examined the link between chronic pain conditions and HRT use in menopausal women, and so far -- it doesn't look good for HRT.

In a small study examining orofacial pain, researchers found that women on HRT reported higher levels of pain than those not taking HRT. Another study using a small sample of participants has examined general levels of chronic widespread pain in those who suffer from fibromyolgia. Researchers compared survey results from women on HRT and those not on HRT, and found an increased risk of chronic widespread pain in women who were currently using HRT.

A third small study examined back pain in elderly women and compared pain levels between those currently on estrogen therapy and those not taking estrogen therapy. Researchers found that a significantly higher percentage of those on estrogen therapy reported clinical back pain and impaired back function than those who had never taken estrogen therapy.

Finally, a recent study has compared the level of pain response in postmenopausal women on HRT to those who have never taken HRT. Researchers found that women on HRT showed lower pain thresholds and tolerances generally than those women not taking HRT.

In each of the studies, researchers indicate that it is not clear if HRT is the cause of increased pain and pain sensitivity, or if those on HRT had more menopausal symptoms (including pain) to begin with. No exhaustive study has yet been completed on the topic of HRT and pain, and little is known on the relation between menopause and chronic pain conditions.

Sources:

J Womens Health 1999 Apr;8(3): 313-20; Clin J Pain 2000 Jun;16(2):121-6; Expert Opin Pharmacother 2001 Nov;2(11):1839-48; Rheumatology 2002 Apr;41 (4):454-7; Spine 2001 Jul 15;26(14):1606-12 Pain 2001 May;92(1-2):229-34.

Marni Jackson is a Toronto writer and the author of Pain: The Fifth Vital Sign (Random House) which has just been published. Her first book, The Mother Zone, was a Canadian bestseller and has just been reissued by Random House in a new edition.