“The gender pain gap hurts everyone – including the healthcare system and taxpayers”

For decades a lot of ink has been spilled both online and in print about pain treatment disparities between men and women, often by the patients themselves.

One very famous case is that of actress comedienne Gilda Radner, who in her book It’s Always Something described how she started experiencing acute exhaustion and pain in her upper legs in 1985 while filming Haunted Honeymoon in the United Kingdom.

She sought medical attention, and over the course of the next year, several doctors, the most of whom were in California, gave her differing diagnoses that ultimately turned out to be false. Several told her it was period pain and Epstein-Barr Virus which Radner herself referred to as fitting to “the Queen of Neurosis.”

For many like Radner, period pain has been blamed for what later turns out to be an unrelated illness or physical condition.

Radner continued to feel abdominal discomfort for 10 months. By the time they finally diagnosed her with Stage IV ovarian cancer in October 1986, the tumour inside her had grown to the size of a grapefruit.

Radner had a hysterectomy along with radiation and chemotherapy. Following remission and relapse, she died three years later at age 43. If only the doctors had listened and investigated all the possibilities sooner.

In November 2022, 33 years after the death of Radner, the first-ever gender pain gap report was released. The report, researched and compiled by Nurofen, based on a survey in the United Kingdom of 5,100 participants, analyses the differences in experience of pain for both men and women in the United Kingdom and found:

1. 56 per cent of women surveyed, compared to 49 per cent of males, felt their pain was disregarded or neglected.
2. One in four women vs one in six males reported having feelings that generally, no one took their suffering seriously.
3. Of those that felt this way, 50 per cent said their GP and 27 per cent said their GP (the UK equivalent of a PCP) ignored or dismissed their pain, with partners/spouses (26 per cent) and friends (21 per cent) reacting in similar ways.
4. Nearly two-thirds (63 per cent) of women believe that doctors and nurses discriminate against women and treat men’s pain more seriously.

The reasons it took so long for such a study are present in the results. The report states that the gender gap found in this study is probably a product of a “male as default” philosophy and historic practice that pervades research, clinical trials, healthcare policy and services.

It seems Radner wasn’t the only one who thought herself neurotic. The report also states that only 28 per cent of women who experience severe daily pain would seek consultation with their GP.

That trend continues with treatments for pain where 74 per cent of women would choose self-care over seeing an GP due to feeling ignored or dismissed compared to just 60 per cent of men. And almost a quarter (24 per cent) of the women surveyed also reported that pain had led to them feeling depressed, compared to 18 per cent of men.

These results, while shocking, are an everyday experience for most women we know.

The first study definitively proving the existence of menstrual pain was released by Harvard and Apple in March 2021. Women obviously knew menstrual pain existed, the pain simply wasn’t considered important enough to merit research funding.

In 1998 sildenafil citrate, later marketed as Viagra, was tested as heart medication and found to offer total relief for serious period pain over four hours. The review panel refused further research funding because cramps were not a public health priority.

In 2007 sildenafil citrate was found to help hamsters recover from jet lag. In 2013 sildenafil citrate was again shown to relieve menstrual pain but the study ran out of funding. Hamsters get priority over women.

More recently one of this article’s authors sought counselling for hypochondria after numerous doctors told her the mysterious ailments she was suffering, including debilitating migraines, dry eyes and vertigo, were psychosomatic.

It was a nurse who told her it was perimenopause. Simple hormone therapy solved years of symptoms.

Gender pain disparity is a safety issue

In 2020, the First Do No Harm report was published by the Independent Medicines and Medical Devices Safety Review, chaired by Baroness Julia Cumberlege.

The Review team spent two years speaking to more than 700 women and their families who experienced complications linked to three treatments–1) sodium valproate, an epilepsy drug that increases the risk of birth defects; 2) Primodos, a hormonal pregnancy test withdrawn from the market in 1978, allegedly associated with birth defects and miscarriages; and 3) pelvic mesh implants, used to treat prolapse and urinary incontinence, the complications of which can cause debilitating pain “like shards of glass inside the body”.

The 277-page report is an explicit and gut-wrenching read, laying out in minute detail the multitude and shocking ways in which patients – most of whom are women – were treated dismissively by the healthcare system with the resulting outcomes being just as severe, including job loss, breakdown of family life, children or husbands becoming carers for mothers or wives, and for women with children suffering from foetal valproate spectrum disorder, being accused of abuse by poorly educated clinicians.

On page 17 of the report, under the subtitle ‘No-one is listening’ – The patient voice dismissed, the Review team writes: “They spoke of being ‘gaslighted’ and of not being believed, particularly in relation to pelvic mesh and the suffering of pain.

“Women, in reporting to us their extensive mesh complications, have spoken of excruciating chronic pain feeling like razors inside their body, damage to organs, the loss of mobility and sex life and depression and suicidal thoughts.”

The Review team goes on: “Some clinicians’ reactions ranged from ‘it’s all in your head’ to ‘these are women’s issues’ or ‘it’s that time of life’ wherein anything and everything women suffer is perceived as a natural precursor to, part of, or a post-symptomatic phase of, the menopause.”

The Review then explains some of the consequences of this treatment, including the increased costs to the UK taxpayer.

“We know that women who accept a normalisation of their pain tend to seek the help they need far later than they should,” they write.

“This precludes the possibility of early, less invasive treatment with potentially better outcomes. It also takes its toll, physically, mentally and emotionally on the patient and their family and imposes ultimately a far greater cost on the NHS and the healthcare system to treat and attempt to put right.”

What steps can we take to narrow the gap?

Nurofen’s study is a good start. They’ve also launched a website called named See My Pain where the stories of real women are posted.

Their parent company Reckitt Benckiser has also committed to several long-term initiatives that go beyond marketing to finally close the gender pain gap.

For instance, the business will invest in creating new tools to help both men and women describe and articulate their suffering while speaking with medical specialists.

Reckitt has also pledged to include gender balance when planning and analysing its clinical studies, provide training in identifying gender bias and will frequently review the Gender Pain Gap Index Report to monitor progress. (Note: The authors are not affiliated with Reckitt.)

These are all good first steps from a brandholder in the medical ecosystem.

Healthcare professionals could receive training in active listening techniques. Medical school curriculums and continuing education sessions could explore and raise awareness of the gap, which may initiate an openness and curiosity for students and physicians to look beyond defined conditions.

Patients should learn to be their own advocates. Today we have technologies, digital platforms, social media and online communities to better inform and empower an individual.

Perhaps if Gilda’s medical team was more curious or she had a broader support network with similar symptoms she wouldn’t have dismissed herself as “neurotic” and she’d still be here making us all laugh with her wonderful characters.

A longer-term and more involved measure is a comprehensive and macro-review of the healthcare model.

The system has become such a behemoth that medical discoveries and any sense of individualised treatments are ultimately limited if non-existent.

The existing model was built decades prior to the array of digital data and technologies that are available today. Is a complete overhaul needed or can the existing system be reconfigured to utilise and meet contemporary times?

A serious review would reveal best next steps to close the gender pain gap among other improvements.

The Nurofen report concludes on a practical note: “Closing the gap on pain will not only provide immediate solutions for women experiencing pain, but we hope will have a ripple-effect in terms of social and economic gains.”

More importantly, closing the gender pain gap will save lives and will absolutely improve the quality of life for women navigating pain.

 

Cindy Moy Carr is the founder and CEO of Vorsdatter Limited which developed mySysters, an app for perimenopause and menopause. She’s an attorney and journalist who authored the American Bar Association’s Guide to Health Care Law.

Tami Wahl serves as legislative and regulatory counsel for innovators across multiple industry sectors.