In February this year, Beth Harris sat in the day surgery waiting room of her local hospital and tried to steady her nerves. She was there for a hysteroscopy, in this case to remove a fibroid. A thin surgical instrument with a lens, a light, a blade and an irrigation system for pumping saline solution would be inserted through her vagina and cervix, into her womb. The saline solution would widen the womb and the fibroid would be shaved away. Her hospital had advised taking paracetamol or ibuprofen an hour before the appointment, which Harris had done. However, the appointment was for 1pm, and by 4pm, she was still waiting in her hospital gown, surrounded by other patients.
Hysteroscopies are common procedures – classed by the NHS as “high volume low complexity”. In 2021, 71,000 took place in England alone. This was Harris’s third. “I’d been shocked by how painful the first two were,” she says. They had been “diagnostic” only – examinations of the inside of the womb – because years of breast cancer medication had led her womb lining to thicken. When she learned that she had a fibroid that needed removing, Harris’s first question was: “Will it be painful?” Her gynaecologist assured her that she would be given local anaesthetic and “wouldn’t feel anything”. He compared it to “going to the dentist”.
Distressing scenes in waiting room
Any doubts Harris harboured while awaiting that procedure were multiplied by the two patients treated ahead of her. “The first woman was hysterical when she came out,” she says. “The nurse had to get the consultant to talk to her. The second collapsed in the recovery room. Nobody came to her, so a little old man in his gown and slippers, a random patient, got involved and found a nurse. They took her away on a trolley.”
When Harris was finally called in, there were several people in the theatre. “There was the gynaecologist, nurses, an anaesthetist behind me, although he didn’t do anything. They were talking to each other throughout – no one was sitting with me. It was very casual.” The gynaecologist administered local anaesthetic – a small injection near the cervix – but there was no pause to see if it had worked. “There was no gap, no questions,” she says. “The injection itself was painful, but the procedure, with this spinning blade inside you, was unbelievable. The pressure, the pushing of the machine, the manipulation – it was barbaric. I’ve never experienced anything like it in my life. I felt as if I’d been assaulted. By the end, I was crying my eyes out.” A nurse led her, sobbing, to the recovery room. “There was no dignity, no privacy,” says Harris. “I said to her: ‘There must be a better way of doing this.’”
Campaign for better pain relief
Katharine Tylko, a founder member of the campaign group Hysteroscopy Action (HA), has been saying the same thing for 16 years. HA was formed in 2010 to demand that all hysteroscopy patients are fully informed about the procedure, including the risk of severe pain, and given a full range of pain relief choices – local anaesthesia, gas and air, conscious sedation, epidural, and, for those who need it, general anaesthetic. “In short, we want parity with colonoscopy patients, half of whom are men,” says Tylko. In April, the renewed Women’s Health Strategy set out by the then health secretary Wes Streeting seemed a major breakthrough. Action 7 of the strategy called for informed consent and a choice of pain relief for hysteroscopies. “We were thrilled,” says Tylko, “but there’s been nothing since. Just silence.”
Many conditions might require a hysteroscopy. By far the most common is heavy or unexplained bleeding. In 2018, guidelines from the National Institute for Health and Care Excellence made them the primary diagnostic tool for this. A hysteroscopy’s “inside view” of the womb makes them the gold standard for ruling out any sinister pathology such as endometrial cancer. They are also used to investigate cases of unexplained infertility or recurrent miscarriage, to remove uterine fibroids, polyps or scar tissue.
Once hysteroscopies required a general anaesthetic, but this changed through the 2000s and 2010s after clinical audits and trials established that outpatient hysteroscopies were safe, much faster and more cost-effective. (Present NHS targets are that 90% of diagnostic and 50% of operative hysteroscopies take place in an outpatient setting.) Pain relief options vary wildly across the country. Too often, says Tylko, there is nothing beyond a nurse to hold your hand and supply a constant stream of “hairdresser chitchat”.
Personal experiences and systemic issues
Tylko, 71, a musician and translator, required a hysteroscopy 23 years ago, because of unexplained bleeding. “It was late-stage womb cancer which took two years to be diagnosed,” she says. “By then, I was bleeding so much, I was sleeping on bath towels.” After numerous GP appointments, Tylko asked why she wasn’t being referred for investigation. “My GP told me that I would ‘freak out’ at an NHS gynae clinic,” says Tylko. The GP had reached this conclusion partly because Tylko hadn’t had a baby, so her cervical canal had not been stretched, and also because she found smear tests difficult (she now knows this was almost certainly because of undiagnosed endometriosis).
“That night was probably the worst night of my life,” says Tylko. “I thought: ‘She thinks I’ve got something – and she thinks I probably won’t be able to stand the test for it.’ I went privately and still had to jump through lots more hoops, but I finally got a hysteroscopy under general anaesthetic.”
Through her subsequent cancer treatment, Tylko met many women who had been traumatised by their hysteroscopies. “I’d been told that only 2% of women had problems with them,” she says. “I was given the message that if I was ‘normal’, if I’d had children, I wouldn’t be complaining. Then I met women who’d had children with no pain relief but who’d fainted after their hysteroscopies.” The penny finally dropped that she wasn’t the only one who struggled with gynecological procedures.
More than 13,000 women have completed HA’s online survey, which set out to learn more from women’s experiences, and its petition is nearing 70,000 signatures. The comments make harrowing reading. In 2020, a benchmark multicentre study found that mean pain scores for outpatient hysteroscopies were 5.2 (that’s “moderate” on a hospital ward and would merit codeine) and 35% of women had a “severe” pain score of seven and above.
“As a campaign, we’ve had real difficulty treading a rational path between trying to effect change but not putting women off something that can predict cancer,” says Tylko. “We’ve always put the caveat that two-thirds of women do not experience severe pain.” Equally though, outpatient hysteroscopies have a failure rate of around 10%, with pain as the predominant reason, points out Richard Harrison, lecturer and co-lead of pain research at Reading University. “That, too, can lead to a whole lack of engagement with future medical procedures, which could be lifesaving.”
Evidence of pain and gaslighting
Harrison worked on a recently published study that analysed data from nearly 5,000 women who had undergone hysteroscopies. For Harrison and his co-authors, the issue sits within a wider body of research on the gender pain gap – it’s already well established that women presenting in health care settings with pain are prescribed less analgesic than men, and are more likely to be given antidepressants instead. In this hysteroscopy study, they identified a “gynaecological pain gaslighting” where women were repeatedly told: “It can’t be that bad” and: “Most women tolerate this procedure well.”
Helen Garnett, 56, from North Lincolnshire, was so certain that she would be “gaslit” that she secretly recorded her outpatient hysteroscopy and later released it online (with voices altered). “I’d already had two hysteroscopies for heavy bleeding which had been so horrendous, I’d almost passed out,” she says. This time, she called her GP and clinic in advance to request pain relief – and was told her consultant would discuss it on the day. The recording is excruciating to hear. Garnett is nervous, clearly but apologetically asking for pain relief – “I’m not wimpy but this I find so painful” – but is swept through with none. Instead she was left with patronising chatter from nurses: “Do you think we should have some music in here? I could sing to you!”; “You’re doing amazing!”; “Well done you!”
“It feels as if someone is sweeping a knife around inside you,” says Garnett. “I have three daughters, I run my own business, I thought I’d be able to advocate for myself more, but I just couldn’t. It’s crazy. You lose all sense of being an adult as they treat you in such a childlike manner. I’m surprised they don’t give you sweets and a sticker on the way out. As soon as I got away, I burst into tears. I didn’t want them to see me crying like a baby.”
Doctors pushing for change
Some gynaecologists are determined to make changes. Dr Gail Busby, a consultant gynaecologist for 26 years, admits it has been a “learning curve”. “A long time ago, I don’t think we were aware how painful an outpatient hysteroscopy can be,” she says. “As a gynaecologist, you’re so focused on the procedure. We thought it was period-like, crampy pain, which is the case for a lot of women, but it is absolutely undeniable that some women have severe pain and they need to be listened to.”
Two incidents forced Busby to reevaluate. The first was learning through a patient about HA and its campaign. The second was her own experience of a colonoscopy. “It was with sedation, but for me, it was the most hideous, painful thing ever. Some people have no problems with them. I had tears running down my face.” Busby has had a hysteroscopy, too, with no pain relief, and for her, that was fine. “I just think people are wired differently and there’s no way you can predict if you’re going to fall into the one-in-three women who have severe pain,” she says. Busby now offers deep sedation – administered by an anaesthetist and the patient will sleep through most of the procedure – to her hysteroscopy patients at her private Spire clinic and her NHS practice at St Mary’s Hospital in Manchester. “Not everyone needs it, but the women who say they need it really need it.”
Consultant obstetrician and gynaecologist Richard Flint offers conscious sedation – a combination of analgesia and sedative via a needle in your arm – at his clinic in Chelsea and Westminster hospital. “I’ve been performing hysteroscopies for eight years now, and though many patients are fine with outpatient hysteroscopies, there is a large proportion for whom it is agonising,” he says. “From my point of view, I stop immediately and those procedures are really heart-sink moments. You feel you’ve failed the patient.”
In 2023, Flint introduced conscious sedation at C&W, one day a week. They are now expanding it to a five-day service (the only hospital currently offering it for hysteroscopies). They also offer it for other outpatient procedures such as cystoscopies (examinations of the bladder), IUD insertions and manual vacuum aspirations after miscarriage. At the same time, the clinic is trialling the Wid-easy test, a vaginal swab that checks for womb cancer in women with abnormal bleeding. It is already in routine use in Austria and Switzerland, has been introduced in Germany, and is on trial for NHS use in various clinics across the UK. “That is massively reducing the number of hysteroscopies we need to do,” Flint says. He now has data on more than 300 hysteroscopies performed under conscious sedation, which he is releasing shortly. “The pain scores are so much better. The average is two out of 10,” he says. “What has sealed it for me is seeing patients whose previous hysteroscopies had to be abandoned. They usually say: ‘Why didn’t I have this before?’”
Broader efforts and patient impact
There are other small signs of progress. The British Society for Gynaecological Endoscopy has recently appointed a female president – the first in decades – consultant gynaecologist Rebecca Mallick. This month, Mallick and Royal College of Obstetricians and Gynaecologists (RCOG) president Dr Alison Wright met with members of HA. “Alison and I were shocked and have a lot of things to think about,” says Mallick. At present, RCOG guidelines state that outpatient hysteroscopy patients should be fully informed about the procedure first, and “made aware” that there are other settings and pain relief offerings, including a general anaesthetic or intravenous sedation. “We could do a deep dive into why best practice isn’t always happening,” says Mallick. “We’ve got half a million people on the gynae waiting list, so clinics want to see as many people as possible. Are we giving enough time to talk through all the options or just trying to firefight numbers? We need to look at how we can support hysteroscopists to offer all types of analgesic. We also need to advocate for more funding and resources so we can tackle the backlog and improve care.”
Tylko sees this as part of a much bigger picture. “We’re a gathering snowball made up of all sorts of gynae-women’s groups,” she says. “Endometriosis UK, Sling the Mesh, women fighting for better maternity care, better IUD fittings. We are getting together and saying: ‘This has to end.’”
For Harris, any hard-won changes will come too late. She has chosen to have a hysterectomy. “I’ve found a gynaecologist I trust and she is the only one I will let do it,” she says, “but I’m on the waiting list to see a psychologist first to help me get through it. At the moment, since that last hysteroscopy, every medical appointment makes me cry and panic.” Harris is taking this route partly so that she will never need another one. “I will not undergo any more tests, no more procedures, no more examinations. I’ve reached my red light. This is how I’ll bring it to a close.”
