Patients are enduring preventable hysteroscopy pain

“We’ve got 1,500 awful cases of women screaming, sobbing, shouting, whimpering, all the rest of it,” says Katharine Tylko-Hill. “And the doctors went on.”

Tylko-Hill, a spokesperson from the Campaign Against Painful Hysteroscopy action group, isn’t talking about a nineteenth-century medical procedure — she’s talking about patient experiences of hysteroscopy, a procedure that examines the inside of the womb. The group have collected personal accounts of painful hysteroscopies as part of their campaigning.

Hysteroscopy can be used for a variety of reasons, from investigating issues such as heavy periods to diagnosing certain conditions, and in some cases even as treatment — for example, to remove fibroids or displaced IUDs. It involves a doctor inserting a long, thin tube, attached with a camera and a light, into the uterus via the vagina and the cervix.

You might think that a commonplace procedure like this wouldn’t be painful, but by many accounts, you would be wrong. One survey by the Campaign Against Painful Hysteroscopies group found that at least 70 cisgender women who had a hysteroscopy in 2020 were left in extreme pain following the procedure, while 750 of 860 cis women surveyed (87%) were left distressed, tearful, or shaken.¹ Additionally, many people have reported ongoing effects following hysteroscopy, including PTSD.²

But what’s most concerning is not the pain experienced from hysteroscopies – it’s that people are made to endure it when it is preventable.

Pain relief?

All people having a hysteroscopy should be offered the choice of general or local anaesthetic.³ However, hysteroscopies are not usually carried out with anaesthetic at all, and patients may be instructed to take common painkillers instead.

Jaymie, 34, was denied anaesthesia during her procedure when she asked for it, despite the fact that her pain was “beyond anything I had experienced”. “The male doctor told me to relax so it wouldn’t hurt”, she says. “I tried to relax but the pain became worse.” She was finally granted a general anaesthetic during her third hysteroscopy.

How can patients fully consent to medical procedures if they aren’t adequately informed about their effects?

Jaymie’s experience is not unique. In the previously mentioned survey of 860 women, 520 (60%) said that their doctors carried on with the procedure despite them being in severe pain — suggesting that pain during hysteroscopy is considered normal in current practice. Indeed, one medical professor, when addressing an audience of British gynaecologists even called a patient’s pain during the procedure the doctor’s “friend”. “It can guide you in the correct way into the uterine cavity, and in the correct performance of your surgical procedure,” he said in a video posted on Twitter.

While there is a higher risk of complications when hysteroscopy is performed under anaesthesia, as this makes the procedure more complex,⁴ this is small⁵ and generally are not considered to outweigh the benefit of preventing severe pain.⁶

Despite studies showing that most people find hysteroscopy painful, the NHS states that anaesthetic is not usually needed because it is “a relatively quick procedure that does not involve making cuts in your skin”.⁷

Giving consent

“I was told that it would just be a bit uncomfortable, like a smear test”, a person with the username Misled wrote on a public forum about painful hysteroscopy. “This whole [hysteroscopy] experience has completely shattered my trust in medical professionals…I am so angry that I was not given the full facts prior to my procedure and denied my right of informed consent.” Others on the forum report similar experiences.

This raises an important question about consent: how can patients fully consent to medical procedures if they aren’t adequately informed about their effects?

“Instances of pain and injury are one of the subtypes of trauma that can exist. Especially if it comes from a place of violated expectations, or unexpected instances of pain”

There are leaflets available that detail the risks of having a hysteroscopy, however Tylko-Hill says that most hospitals aren’t using them. She suggests this is because they mention “severe pain” and remind people of their right to request general anaesthetic. Instead, “Most [people] will receive a leaflet which says something like, ‘We may do a hysteroscopy, you may have some mild pain’,” she says.

Richard Harrison, a pain researcher at the University of Reading, suggests that withholding information from patients may increase the risk of experiencing trauma following the procedure, because they don’t anticipate it being painful. “Instances of pain and injury are one of the subtypes of trauma that can exist. Especially if it comes from a place of violated expectations, or unexpected instances of pain”, he explains.

Reforming current practice

While hysteroscopy is largely considered to be an effective procedure, it is vital that measures are put in place to ensure that preventable pain is minimised. On this front, Tylko-Hill believes that making general anaesthetic and sedation more readily available is crucial and notes that some hospitals do offer a range of pain relief options for people having hysteroscopies. This includes conscious sedation — a combination of medicines to aid relaxation and block pain, usually a sedative and an anaesthetic — at hospitals belonging to 30 NHS trusts across the UK.⁸

Additionally, she stresses that hysteroscopy practice should involve “Montgomery informed” choice, which is the principle that patients should be fully informed about the risks of a procedure before consenting to it — not just told what the doctor thinks they should know.

Solutions do exist, but action from stakeholders is required, says Tylko-Hill: “We want the Royal College of Anaesthetists, The Royal College of Obstetricians and Gynaecologists and the BGSE (British Society for Gynaecological Endoscopy) to get together with the Department of Health. And say, ‘look, we have to rethink this.’”

If you’ve experienced a painful hysteroscopy and would like to contribute to the Campaign Against Painful Hysteroscopy’s bank of evidence, you can fill out their anonymous survey here
 
 
Featured image is an illustration of a person with a vagina having a hysteroscopy done. Only their legs are visible, which are lying in stirrups, as the rest of their torso is covered with a sheet. The doctor’s face is visible between their legs. The illustration is in black and white against a pale blue background

Page last updated May 2021