• Menstrual health and gynaecological conditions, including period poverty and the impact of menstruation on everyday life, whether or not it is painful and heavy.
• Sexual health and contraception, including barriers to accessing information for particular groups of women and geographical variation in the commissioning of services.
• Fertility, pregnancy, pregnancy loss and maternal health, including lack of information about factors affecting fertility and options for treatment.  Variations in access to IVF were also raised, as well as the issues of disparities in maternal and neonatal outcomes and women not feeling heard during and after pregnancy.
• The menopause, including gaps in training and guidance for healthcare professionals and the impact of menopause symptoms on women's employment and opportunities.
• Gynaecological and other cancers, including a lack of high-quality, up-to-date information on risk factors and symptoms of female cancers, misdiagnosis and lack of personalised care. Some responses also raised the issue of trauma associated with cervical screening and other gynaecological procedures as a result of previous sexual assault or trauma.
• Mental health, including how women's health conditions can interact with and affect mental wellbeing across the life course, and lack of access to appropriate mental health support at the point of need.
• Healthy ageing and other conditions, including a lack of focus on the needs and concerns of older women, such as incontinence and osteoporosis. Some responses also raised the issue of a lack of understanding and recognition of how women may experience health conditions in different ways to men.
• Violence against women and girls, including the impact of and complications associated with procedures such as hymenoplasty that are still prevalent amongst some cultural groups. Some responses also raised the fact that women who have been subject to abuse and violence face significant additional barriers to accessing healthcare.

A wide range of recommendations to improve women’s health outcomes and service provision were shared in the responses. Some key themes of these recommendations include:

• Increase public awareness of women’s health topics and improve access to high-quality information in digital and non-digital formats.
• Introduce and update legislation to better protect women and improve service quality.
• Ensure national guidelines are fully and consistently implemented, and extended where necessary to address important gaps.
• Improve healthcare professionals’ education and continuous development to better listen to and support women.
• Prioritise integrated, holistic, and user-centred care models to respond to the varying needs of women across the life course.
• Increase funding to improve women’s health services and address disparities between men and women, and different groups of women.
• Increase funding to improve women’s health services and address disparities between men and women, and different groups of women.

Related reading

Patient Safety Learning: Women’s Health Strategy Consultation Response
Medicines, research and female hormones: a dangerous knowledge gap
Dangerous exclusions: The risk to patient safety of sex and gender bias (Patient Safety Learning, March 2021)

The top 5 topics respondents want DHSC to prioritise for inclusion are:

• gynaecological conditions (63%)
• fertility, pregnancy, pregnancy loss and postnatal support (55%)
• the menopause (48%)
• menstrual health (47%)
• mental health (39%).

This selection varies most notably by age, with topics rising in importance as they correspond with each stage of a woman’s life course.

Other popular topics include research into health issues or medical conditions that affect women (34%), gynaecological cancers (30%), and the health impacts of violence against women and girls (30%).

• The state of the UK gynaecology waiting list
• The impact of gynaecology waiting lists
• The challenge ahead

It makes the following recommendations to ensure the effective and equitable recovery of elective gynaecology services:

1. Prioritisation of care as part of NHS recovery must look beyond clinical need to also consider the wider impacts on patients waiting for care.
2. There needs to be a shift in the way gynaecology is prioritised as a specialty across the health service. This must also include action to move away from using the term ‘benign’ to describe gynaecological conditions.
3. Elective recovery must address the unequal growth of gynaecology waiting lists compared to other specialties.
4. Elective recovery in gynaecology must focus on reducing the disparities between different regions and CCGs, ending the postcode lottery for gynaecology care.
5. Governments across all four nations must put in place fully-funded, long-term plans for the NHS workforce to ensure that staffing does not continue to be a barrier to reducing waiting lists.

When carried out using a method recommended by WHO, abortion is a safe procedure.

Tragically, however, only half of all abortions take place under such conditions, with unsafe abortions causing around 39 000 deaths globally. Most of these deaths are in lower-income countries – with over 60% in Africa and 30% in Asia – and among those living in the most vulnerable situations.

The new guidelines include recommendations on many simple interventions at the level of primary care that:

• improve the quality of abortion care provided to women and girls
• include task-sharing by a wider range of health workers
• ensure access to medical abortion pills, which mean more women can obtain safe abortion services
• ensure that accurate information on care is available to all those who need it.

For the first time, the guidelines also include recommendations for the use of telemedicine where appropriate, which has helped support access to abortion and family planning services during the COVID-19 pandemic.

Removing unnecessary policy barriers facilitates access to safe abortion

Alongside the clinical and service delivery recommendations, the guidelines recommend removing medically unnecessary policy barriers to safe abortion, such as criminalisation, mandatory waiting times, the requirement that approval must be given by other people (such as partners or family members) or institutions, and limits on when during pregnancy an abortion can take place.

Such barriers can lead to critical delays in accessing treatment and put women and girls at greater risk of unsafe abortion, stigmatisation and health complications, while increasing disruptions to their education and ability to work.

Evidence shows that restricting access to abortions does not reduce the number of abortions that take place. In fact, restrictions are more likely to drive women and girls toward unsafe procedures. In countries where abortion is most restricted, only 1 in 4 abortions is safe, compared to nearly 9 in 10 in countries where the procedure is broadly legal.

It is well established that menstrual and menopausal hormones interact with certain medications. Varying levels of reproductive hormones throughout a woman’s menstrual cycle and lifespan have resulted in women historically being excluded from clinical trials. Female bodies have been perceived as ‘too hard’ and costly to research and, perhaps, unworthy of the effort. Author of ‘Invisible Women: Exposing data bias in a world designed for men’ Caroline Criado Perez argues that “When [women] are included in tests they tend to be looked at in the early follicular phase of their menstrual cycle, when hormone levels are at their lowest – i.e. when they are superficially most like men. Most medical trials are done on male cells even though female cells react differently.”[1]

But this approach has a major flaw – evidence gathered about the safety and effectiveness of a medication will not apply to a patient group that it has not been tested on. Different metabolism of medications between men and women is to be expected, as male and female bodies are biologically different, right down to the cellular level.[2] Lower body weight, slower digestion, less activity from intestinal enzymes and slower filtration by the kidneys are all factors that cause this difference. Medications can also have varying effects depending on the time they are taken in a woman’s menstrual cycle, as well as affecting the menstrual cycle itself. Where we lack data on these factors, we are left with a dangerous knowledge gap that has a real impact on the safety of women within healthcare. A 2020 research study that found that women experience up to twice as many adverse drug reactions as men.[3]

Since the 1990s, there has been growing acknowledgement that understanding interactions between medications and female hormones and bodies is essential for patient safety. However, the impact of this historical issue persists; a 2017 research study found that the effects on different sexes of around one-third of drugs were still unknown.[4] If doctors lack information to safely offer and prescribe certain drugs to female patients, informed consent is undermined at its most basic level.

A brief history of women and clinical trials

Alongside concerns about additional costs[5] and the perceived complexity of including women in general clinical trials, lies the fact that trials for treatments specific to women have received far less funding and attention than those that affect men.[6]

Clinical trials that include women of childbearing age have also suffered from a self-perpetuating cycle of inadequacy. Although the lack of appropriate clinical trials led to the thalidomide tragedy of the 1960s in the first place, in its aftermath researchers became more wary of including women of childbearing age in clinical trials. The US Food and Drug Administration even introduced a precautionary ban on women of child-bearing age taking part.[7] But this move perpetuated the issue and had far-reaching consequences for medication safety for women.

As the implications of these exclusions became clearer, US regulators made moves to redress the balance and make the case for including women in more clinical trials. In 1990, the US Office of Research on Women’s Health was established, with one of its aims being to “ensure that women are appropriately represented in biomedical and biobehavioral research studies, especially… clinical trials.” In 1993, the US passed a law that meant women could no longer be excluded from National Institute of Health (NIH)-funded research. It is harder to find information on the history of women and clinical trials in the UK, and a 2005 study reviewing clinical trial participation noted that “the issue of exclusion from trials of women, older people and ethnic minorities has been relatively neglected in the UK research community.”[8] The authors highlighted that, in the sample of trials they looked at, “USA trials were more inclusive than UK/European trials,” suggesting that legislating for inclusion makes a difference to representation.

Evidence-gaps with serious consequences

There are significant patient safety issues associated with this lack of knowledge. Prescribed dosages rarely take into account the sex of the patient,[9] and because male and female bodies metabolise medications at different rates, women may be prescribed inappropriate doses.[3] Women have been found to be more sensitive to beta blockers, opioids, selective serotonin reuptake inhibitors and antipsychotics.[9]

The evidence gap is seen starkly in the link between adverse outcomes for women with heart failure and gender bias in research. Between 1987 and 2012, women made up only 25% of participants over 31 landmark trials for congestive heart failure,[1] and the result of this lack of data is that many heart medications are less effective in women than in men.[10] Add to this the fact that women are 50% more likely to be misdiagnosed during a heart attack, and it paints a worrying picture.

Rethinking research during pregnancy and breastfeeding

One group that has been excluded perhaps more than any other from clinical trials is pregnant women. As the 2020 Cumberlege Review ‘First Do No Harm: The report of the Independent Medicines and Medical Devices Safety (IMMDS) Review’ states, “The risk of teratogenicity has meant women are largely excluded from clinical trials; as a result only a handful of medicines are licensed for use in pregnancy and the safety profiles of newer medicines in pregnancy are initially unknown.”[11] According to a 2011 study, the teratogenic risk in human pregnancy was “undetermined” for 98% of drug treatments approved by the FDA between 2000 and 2010, and the mean time it took for drugs to be assigned a more precise risk was 27 years.[12]

This lack of knowledge about medications in pregnancy means that women struggle to make informed choices about the safest course of action for themselves and their babies.

The IMMDS Review highlights the stark consequences of this, addressing the harm caused by the hormone pregnancy pill Primodos and the anti-epileptic drug sodium valproate, both of which cause birth defects. Available evidence suggests that valproate, which was used in the UK from 1971, causes physical malformations in 10% of children and autism and developmental delay in 40% of children when taken by mothers during pregnancy. However, “the system does not know” to this day the exact number of children affected by women taking valproate or Primodos during pregnancy. A register for tracking physical malformations caused by valproate was only established in 1996, in spite of concerns being raised about the drug from 1972, and is only a voluntary measure.[11] The suffering and pain caused to mothers, their children and their families by these drugs is unquantifiable.

The Covid-19 pandemic has thrown fresh light on the importance of including pregnant women in medical research. The fact that they were largely excluded from testing vaccines and treatments[13][14] meant that pregnant women were left unprotected from Covid-19 for much longer than most of the population, despite being at higher risk of hospitalisation from the virus.[15][16] Pregnant women and their doctors were unable to make informed decisions about the risks posed by the vaccine because the data simply didn’t exist. 

Great care needs to be taken in deciding whether there is a benefit to including pregnant women in medical research, but the reality is that pregnancy and ill health are not mutually exclusive conditions, as Katherine Shubert of the Society for Women's Health Research notes, “People who are sick or have chronic conditions can become pregnant, and those who are pregnant can get sick or develop health conditions.” So there is a clear need to find out which treatments are effective and safe for pregnant women and their unborn children. 

In 2017, the US Government established a Task Force on Research Specific to Pregnant women and Lactating Women, which made recommendations and published an implementation plan to address barriers to including pregnant and breastfeeding women in research. In the UK, the recent development of standard definitions and grading for adverse events in pregnant women [17] has the potential to speed up progress in developing new treatments for use during pregnancy.

Encouraging women to take part in research studies and clinical trials

This narrative that women, particularly pregnant women, shouldn’t take part in medical research may also have the effect of discouraging women from applying to take part. 

The US NIH has posited that women may be reluctant to take part because of fear and distrust of researchers, lack of knowledge about trials and interference with work or family responsibilities,[18] but there is limited research on the issues women see as barriers, and how to overcome them. 

Some research shows that women declined more often to participate because they perceived a higher risk of harm from trial participation than men.[19] Under-diagnosis also means fewer women are eligible for trials in certain areas, such as cardiovascular disease.[18]

A more balanced future

There is a way to go in closing the knowledge gap around sex and medications, but participation has improved over the last decade,[20] and work is being done to balance representation of the sexes in clinical trials.

In the UK, the NIHR launched the INCLUDE Project in 2018 to increase participation of underserved groups in medical research, including women of child-bearing age and pregnant women.[21] As part of the 2017 EU Clinical Trial Regulation No 536/2014, trials based in the EU are obliged to ensure “the subjects participating in a clinical trial … represent the population groups, for example gender and age groups, that are likely to use the medicinal product investigated.”[22]

Technology is also being used to make clinical trials more representative. An increasing number of trials are being designed to operate ‘virtually’, using remote monitoring and telemedicine to decrease the logistical burden of participating.[23] Some organisations are also using AI to more effectively match candidates to trials,[24] but existing bias will need to be taken into account when developing these algorithms.

As we gain more knowledge of the unique ways in which female bodies and hormones interact with medications, there will be an ongoing need to make sure that both doctors and patients understand and can apply this information to use medications more safely.

References

1 Gender data gap: Caroline Criado Perez on how healthcare is “systematically discriminating against women”. Evening Standard. 26 September 2019
2 Straface E, Gambardella L, Brandani M et al. Sex differences at cellular level: "cells have a sex". Handbook of experimental pharmacology. 2012:214:49-65
3 Zucker I, Predergast B. Sex differences in pharmacokinetics predict adverse drug reactions in women. Biology of Sex Differences. 2020:11:32
4 Karlsson Lind L, von Euler M, Korkmaz S et al. Sex differences in drugs: the development of a comprehensive knowledge base to improve gender awareness prescribing. Biol Sex Differ.  2017:8:32
5 Ravindran T, Teerawattananon Y, Tannenbaum C et al. Making pharmaceutical research and regulation work for women. The BMJ. 2020:371
6 'Women have been woefully neglected': does medical science have a gender problem? The Guardian. 18 December 2019
7 Fang A. Sex Bias in Pharmacological Studies. The Public Health Advocate. Spring 2021
8 Bartlett C, Doyal L, Ebrahim S et al. The causes and effects of socio-demographic exclusions from clinical trials. National Institute for Health Research. 2005:9:38
9 Whitley H, Lindsey W. Sex-Based Differences in Drug Activity. Am Fam Physician. 2009:80(11):1254-1258
10 Crompton S. Should medicine be gendered? Science Focus. 1 May 2019
11 Cumberlege J. First Do No Harm: The report of the Independent Medicines and Medical Devices Safety Review. Crown copyright. 2020.
12 Adam M, Polifka J, Friedman J. Evolving knowledge of the teratogenicity of medications in human pregnancy. Am J Med Genet. 2011:157:175-182
13 Whitehead C, Walker S. Consider pregnancy in COVID-19 therapeutic drug and vaccine trials. Lancet. 2020:395:92
14 Taylor M, Kobeissi L, Kim C et al. Inclusion of pregnant women in COVID-19 treatment trials: a review and global call to action. Lancet Glob Health. 2021:9:366-71
15 Zambrano L, Ellington S, Strid P et al. Update: Characteristics of Symptomatic Women of Reproductive Age with Laboratory-Confirmed SARS-CoV-2 Infection by Pregnancy Status — United States, January 22–October 3, 2020. Weekly. 2020:69(44):1641-1647
16 Coronavirus infection and pregnancy: Information for pregnant women and their families. Royal College of Obstetricians & Gynaecologists website. Accessed 7 March 2022
17 Spencer R, Hecher K, Norman G et al. Development of standard definitions and grading for Maternal and Fetal Adverse Event Terminology. Prenat Diagn. 2022:42(1):15- 26
18 Kim S, Menon V. Status of Women in Cardiovascular Clinical Trials. Arteriosclerosis, Thrombosis, and Vascular Biology. 2009:29:279–283
19 van Diemen J, Verdonk P, Chieffo et al. The importance of achieving sex- and gender-based equity in clinical trials: a call to action. European Heart Journal. 2021:42:2990-2994
20 Are medications and medical devices more dangerous for women? Canadian Institutes of Health Research. 18 July 2019
21 Improving inclusion of under-served groups in clinical research: Guidance from INCLUDE project. National Institute for Health Research. 7 August 2020
22 Sundseth, H. Right from the Start - Including more women in Clinical Trials. European Federation of Pharmaceutical Industries and Associations. 5 March 2020
23 Longworth C. International Women’s Day: The gender gap in clinical trials. Pharmaphorum. 8 March 2021
24 Sikora S. Intelligent clinical trials: Transforming through AI-enabled engagement. Deloitte Centre for Health Solutions. 2020

Related reading

Misogyny is a safety issue: a blog by Saira Sundar
The normalisation of women’s pain
‘Women are being dismissed, disbelieved and shut out’ (Stephanie O'Donohue, November 2020)
Regulatory flaws: Women were catastrophically failed in the mesh, Primodos and Sodium Valproate tragedies

The recent BBC dramatisation of Adams Kay’s memoir of his time as an obstetrician and gynaecologist, 'This Is Going to Hurt', has hit a nerve with many. For some it’s a thought-provoking work of brilliance – that highlights the real-world fragility of the NHS and its workers. For others, the deep vein of misogyny that runs through it is unacceptable, and the dehumanised portrayal of childbirth triggering for many.

Whilst the BBC series is semi-fictional, the objections are part of a trend of women speaking up about being mistreated/disbelieved by medical professionals, resulting in delays in diagnosis and serious harm (in addition to the psychological burden of being gaslit).

It’s not surprising that many of these stories are gynaecological. The uterus may no longer be seen as the source of hysteria, but it has now been replaced by the female mind (or the unpredictable female hormones, which are felt to ultimately control their minds).

We view female pain differently to male pain. Female pain is normalised, as women’s natural physiological processes are presumed to be inherently painful. This myth seems widespread among obstetricians and gynaecologists; for example, frequently using the yardstick of ‘period cramps’ when describing female pain. This comparison manages to both ignore the fact many women do not find menstruation painful, and simultaneously belittle those who do have pathologically painful periods.

It’s easy to forget that for most of western history, women’s reproductive health was not even considered worthy enough to be in the domain of the medical profession (that role being filled by midwives or lay women).  Last year, I spoke at the Royal College of Obstetricians & Gynaecologists (only founded in the 20th century) about the origins and development of our speciality; and how that history still impacts our views, particularly on female pain and decision making.

The response was predictably mixed, but there was a degree of defensiveness I had not anticipated. Perhaps because we see ourselves as the good guys; trying our best to care for women in a broken, understaffed system.

It’s that broken system that’s the setting for ‘This is Going to Hurt’. While the book was nearly universally praised when it was released in 2017, I had found it almost unbearable to read at the time. The sexism, overconfidence, bullying and ‘rag-week’ humour were too painfully familiar to me, as a junior in the speciality; and the praise heaped on the book amplified that feeling. I am also not alone in doubting if the punitive treatment of the (largely white) women in the book would still have been seen as funny if the protagonist was a Muslim man? Would the sarcastic quips be as witty if the arrogance was from a black woman?

There was more nuance in the TV series; with the recognition that (the more fictionalised) anti-hero’s attitude to women was not acceptable – but it was still glamourised. The arrogant, complex, maverick battling inhuman fatigue (while still maintaining excellent hair, and no professional boundaries) is a TV doctor trope. It’s a shorthand for clinical brilliance that sadly persists in the real world. It’s that lack of humility that is particularly dangerous in our speciality and puts women at risk.  Because our patients are female, it is also particularly easy to fall back on the cultural misogyny we have inherited, and blame women themselves when we can’t explain symptoms.

But my experience is that these attitudes are waning, and the obstetric culture of the mid-2000s depicted by Kay increasingly dated. Junior doctors would find his description of ‘Brats and Twats’ bewilderingly alien. But the real change is being forced by women themselves. The public is increasingly questioning and insisting on improvement; and we are rightly having to listen.

Further reading

• Medicines, research and female hormones: a dangerous knowledge gap
• Dangerous exclusions: The risk to patient safety of sex and gender bias
• My endometriosis hell and why chronic pain patients need an end to 'medical gaslighting'
• Regulatory flaws: Women were catastrophically failed in the mesh, Primodos and Sodium Valproate tragedies
• The normalisation of women’s pain
• ‘Women are being dismissed, disbelieved and shut out’
• Gender bias: A threat to women’s health

Over the past 12 months, a similar gender skew has become apparent around the world.

Dr Sarah Jolley, who runs the UCHealth post-Covid care clinic in Aurora, Colorado, told the Observer that about 60% of her patients have been women. In Sweden, Karolinska Institute researcher Dr Petter Brodin, who leads the Long Covid arm of the Covid Human Genetic Effort global consortium, suspects that the overall proportion of female Long Covid patients may be even higher, potentially 70-80%.

“This pattern has been seen in other post-infectious syndromes,” says Dr Melissa Heightman, who runs the UCLH post-Covid care clinic in north London.

As Heightman points out, this is not a new trend when it comes to infectious diseases, rather one which has historically been neglected. Women are known to be up to four times more likely to get ME/CFS (myalgic encephalomyelitis, or chronic fatigue syndrome), a condition believed to have infectious origins in the majority of cases, while studies have also shown that patients with chronic Lyme disease are significantly more likely to be female.

But despite this, there have been relatively few attempts to drill down into why this is the case. Instead, because these conditions predominantly affect women, they have more often been dismissed as being psychological in origin.

“In general, there’s not as much research money and attention on conditions that primarily affect women,” says Julie Nusbaum, an assistant professor at NYU Long Island School of Medicine. “That’s just a general disparity in medical research. I think certain biases persist that when women present with a lot of body aches or pains, there’s more often an emotional or personality component to it than medical origin.”

There is a 30 minute Adjournment Debate at the end of each day's sitting of the House of Commons. They provide an opportunity for an individual backbench MP to raise an issue and receive a response from the relevant Minister. Unlike many other debates, these take place without a question which the House of Commons must then make a decision on.

NHS Hysteroscopy Treatment

In this debate Lyn Brown MP outlined the issue of significant numbers of women who experience extreme levels of pain when undergoing hysteroscopy, highlighted by groups such as the Campaign Against Painful Hysteroscopy. She shared several patient testimonies, highlighted concerns about healthcare professionals dismissing and ignoring patients concerns and emphasised the need for NHS trusts to offer patients who need a hysteroscopy a full range of anaesthetics and to inform them accurately about the risk factors for serious pain.

You can read the full transcript of the debate here.

Join the conversation

Are you a patient who has had a hysteroscopy? You can share your experience with us, and read those of others, here.

Related Reading

• Campaign Against Painful Hysteroscopy: patient stories, September 2018
• Patient Safety Learning, Improving hysteroscopy safety, 6 November 2020
• Patient Safety Learning, Minister acknowledges patients’ concerns about painful hysteroscopies; but will action be taken?, 20 January 2021
• Patient Safety Learning, Ministers respond to patients’ concerns about painful hysteroscopies: Northern Ireland, Scotland and Wales, 15 February 2021
• Patient Safety Learning, Through the hysteroscope: Reflections of a gynaecologist, 26 January 2021
• Richard Harrison, “Pain-free hysteroscopy”, a blog by Dr Richard Harrison, 6 November 2020

Related reading

Dangerous exclusions: The risk to patient safety of sex and gender bias (Patient Safety Learning, March 2021)
The pain of my IUD fitting was horrific…and I’m not alone
Gender bias: A threat to women’s health (August 2020)
Medical trauma from IUD fitting: it’s not just five minutes of pain for five years of gain

A public conversation has finally started about pain relief for IUD fittings. Several women in the public eye, such as Naga Munchetty and Caitlin Moran, have come forward with appalling stories about their experiences in the stirrups. Like with recent public reckonings about violence against women in public spaces and in various industries, it’s a shame these conversations were only started when women aired their bloodstained laundry out in public, in the hopes that someone, somewhere, might give a damn. Anyone who does care now has plenty of accounts to sift through, as more and more people share horror stories of excruciating agony, screams echoing down the surgery corridor, uncaring doctors and going into shock - all from a procedure which the NHS website describes as potentially ‘uncomfortable’.

However, something desperately important is missing from this conversation: the long-term impact these traumatic experiences can have on physical and mental health.

I was 22 years old when I decided to get the coil. I was fed up with side-effects from the pill, and wanted something lower maintenance and non-hormonal. The coil seemed perfect for me. Walking into the clinic, I wasn’t too worried about it being painful. 'If it was that bad, they’d never let anyone do it without anaesthetic', I thought. 'I’m not especially squeamish, and everything I’ve read says paracetamol is enough'. Thirty minutes later, I was lying on the table feeling like I’d just been skewered on a doner kebab rotisserie. I was allowed to leave despite barely being able to walk. I remember hobbling to the toilets, and seeing in the mirror that my face had turned grey. I remember sitting on the toilet, ears ringing, and then everything going black. I was found some time later sitting in the waiting room with my head in my hands, struggling to process what had just happened. 

Personally, I think there’s a general tendency to believe that female genitalia is built for pain. It’s a belief that those of us who grow up female are drip-fed in a hundred small ways. Being told that sex is meant to hurt the first time, that it’s normal to bleed. Drip. Being told that women have naturally higher pain thresholds, that our bodies are just machines for making babies. Drip.

It’s ubiquitous in accounts of difficult coil fittings; one person’s GP told her that if she thought the coil hurt, she’d have ‘no chance’ during childbirth. Drip. Being told by the nurse after my own fitting that I’d been ‘very brave’. Brave for what? For feeling pain which I hadn’t been told I might experience, without screaming my head off? Drip, drip, drip. If thousands of personal accounts aren’t enough – and so far they clearly haven’t been - then please, dig into the wide range of scientific studies analysing gendered pain bias.[1] 

This deep-rooted belief that pain counts less when it happens to female genitalia changed my life for the worse when a medical professional thought it was a good idea to artificially dilate my cervix without analgesics. This is one reason why the burden of asking for pain relief during coil fittings should never be put exclusively onto the person getting the coil – because we’ve been pressed from day one to believe that excruciating pain in our reproductive organs is natural. Inevitable. Good practice for childbirth.

Like all people my age with a cervix, I’ve now started getting letters inviting me to cervical cancer screening. On a rational level, I’m grateful to live in a time and place where I can access such fantastic lifesaving healthcare, free at the point of delivery – but as we all know, trauma is not rational.

Before I got the coil, I had no problems with doctors poking at my cervix. I’d done it several times and found it uncomfortable, but very manageable. I could get on with my day afterwards. After the shocking pain of my coil fitting, that peace of mind is gone.

During the smear test, my rational mind said, ‘relax, this isn’t going to hurt,’ – but another voice whispered, ‘but you didn’t think it was going to hurt last time either! If it happened then, why not now?’ I was extremely tense the entire time, which made the procedure more difficult for the nurse, and more painful for me. 

To make things worse, my results came back ‘abnormal’. I needed a colposcopy and biopsy to check if the minor cellular changes to my cervix were benign. Although this would be stressful for anyone, lingering trauma from my coil fitting massively compounded that stress. I barely slept the night before the procedure. On the table, when I felt the biopsy tool scraping against my cervix, that whispering voice picked up a megaphone. I was convinced that lancing, kebab-skewer pain was coming for me, any second now. I started sweating and crying uncontrollably, head spinning, and again, was completely unable to relax, making the whole ordeal more painful for me and more difficult for the gynaecologist. Fortunately, the results came back fine. The cellular changes aren’t malignant, and even if they have worsened by my next check up, treatment is very effective when it’s caught so early. 

But what if I hadn’t gone for the test? I’m positive there are many people out there living with medical trauma from painful coil fittings, who put off getting cervical smears and other vital tests.

If I’d done the same – and there was part of me which really wanted to - and if my cellular changes had developed unchecked into cervical cancer, my life would have been at risk. That’s a heavy price to pay for contraception. The utter shock of how painful my fitting was has damaged my relationship with my own gynaecological health, with my own body. This damage is probably permanent, and if that isn’t medical malpractice, then I’m not sure what is.  

Have you experienced pain during an IUD fitting? You can share your story in our community conversation about painful IUD fitting.

Related reading

The ripples of trauma caused by severe pain during IUD procedures (BMJ Opinion, July 2021)
The pain of my IUD fitting was horrific…and I’m not alone
The normalisation of women’s pain

References

1 Jennifer Billock. 'Pain bias: The health inequality rarely discussed'. BBC News, 22 May 2018

“I assumed it was a bit like a coil,” says Sansom, 54, a PR manager from Cambridgeshire, “and if I didn’t get on with it, I could have it taken out. I had no idea it was permanent.”

When Sansom awoke from her surgery, she was in pain, but expected it to settle down. “But the pain got worse,” she recalls. “It frightened me. I have good pain tolerance but I’d never experienced pain like it. I felt so stupid that I’d gone in for surgery and not even Googled it before I did. I trusted my doctor."

Sansom started researching and learned that the procedure had been suspended in Scotland since 2014, after concerns over side-effects. “I felt so stupid,” she says, “that I’d gone for surgery and not Googled it beforehand. I trusted my doctor.” She decided to raise awareness of the possible side-effects of the procedure and founded Sling the Mesh in June 2015. Within days she had 20 members; now there are 9,400.

Everyone in the group has been devastated by mesh. “Seven out of 10 women have lost their sex lives,” says Sansom. “A quarter are suicidal. The devastation on the page is so awful.”

Further blogs from Kath Sansom

• ‘Mesh removal surgery is a postcode lottery’ - patients harmed by surgical mesh need accessible, consistent treatment
• Ineffective medical device recalls are a patient safety scandal
• Regulatory flaws: Women were catastrophically failed in the mesh, Primodos and Sodium Valproate tragedies