Women ‘traumatised’ by invasive hysteroscopies that are often carried out with just paracetamol
Some women are being left “traumatised” following a routine gynaecological procedure that is often carried out with minimal pain relief, with one pain expert warning there is an “apathy” within the NHS in changing how it is done.
Thousands of women have reported feeling extreme pain during hysteroscopies, according to a campaign group.
A hysteroscopy is a procedure used to examine the inside of the uterus and involves inserting a telescope with a camera into the womb.
The procedure can be a vital diagnostic tool for women exhibiting a number of symptoms, including unexplained bleeding, and can be used to remove growths in the uterus, such as fibroids and polyps.
There are various pain relief options for the procedure, including general anaesthetic. However, campaigners say it is common for women to be told just to take paracetamol before they arrive at the hospital.
Doctors claim this is sufficient pain relief for the majority of patients, however a significant number of women have reported pain so severe that it has left them feeling “traumatised” and “violated”.
Jenny Wade, 51, had a hysteroscopy carried out earlier this year after her GP referred her to Leicester General Hospital to investigate her postmenopausal bleeding.
Ms Wade’s husband took a phone call from the hospital when she was not at home booking her in for an appointment. Ms Wade was not told at any point she would be having a hysteroscopy and thought she was going into hospital to discuss a previous ultrasound.
“I was absolutely totally in shock,” Ms Wade said, describing walking into the room with the hysteroscope and chair with stirrups.
“They said something along the lines of: ‘You’ll just feel some slight cramping. Did no one tell you to take some paracetamol before you come in?’” she said.
According to a best practice paper published by the Royal College of Obstetricians and Gynaecologists this year, women should be given accurate written and verbal information about hysteroscopies ahead of their appointment, including the various pain control options.
Women should also be informed that a third of patients undergoing an outpatient hysteroscopy report pain levels at seven or above out of 10, the guidance states.
Ms Wade said she asked if she could have the procedure under general anaesthetic and was told she could, but there would be a wait.
She decided to go ahead with the procedure without the anaesthetic as she was worried she could have cancer and did not want to delay a diagnosis.
“I’ve never known pain like it. I had tears flooding down my face,” she said describing the procedure.
“It was so traumatic. The only way I can describe the pain is similar to childbirth. I’d say it could have even been worse because I had an epidural during childbirth.”
Half way through the procedure Ms Wade was given gas and air to help with the pain, but she said this was not enough and was left feeling “violated”.
She had to be prescribed sleeping pills by her GP as she could not sleep in the weeks following the procedure.
“I would never ever have that done again in a million years without general anaesthetic,” she said. “It does leave you traumatised. I was shaking in the car. I couldn’t get warm. I couldn’t sit upright for ages.”
Ms Wade has submitted a complaint to University Hospitals of Leicester NHS Trust, which is now being investigated.
A group called the Campaign Against Painful Hysteroscopies has collected over 3,000 testimonies from women like Ms Wade who have experienced extreme pain during hysteroscopies.
‘I couldn’t speak. I actually felt in shock’
Dr Sarah McGarrol, a researcher based in Scotland, was urgently referred to her local gynaecology department in 2020 due to unexplained bleeding.
Despite the urgent referral, it took over a year for her to be seen by the department, run by NHS Forth Valley, at which point it was advised that she should have a hysteroscopy.
The outpatient hysteroscopy was carried out in January 2022. Dr McGarrol said she was sent an information sheet in advance that advised her to take paracetamol, however she said the sheet didn’t “explain the level of pain that might be expected” or indicate there were other pain relief options.
She said the consultant did not mention that it was possible to have the procedure done under general anaesthetic even when she said she was worried about the pain. She was told she could receive a local anaesthetic injection if she experienced pain during the hysteroscopy.
Dr McGarrol said she decided to go ahead with the procedure because she had “waited for so long” and was “concerned about having no explanation around the bleeding”.
However, the pain was so severe during the procedure that the hysteroscopy could not be completed, even after Dr McGarrol was injected with a local anaesthetic.
“It was just too painful. I kept on trying to steal myself. I was gripping onto the arms of the chair. I thought this was just horrible. Then I just thought, ‘I can’t cope with this anymore.’ I don’t know how long that lasted, but it didn’t feel like 10 minutes – it felt like a lot longer than that,” she said.
After the procedure Dr McGarrol said she “burst into tears” and “couldn’t speak”. She was signed off work for one week due to the ongoing pain she experienced.
Dr McGarrol was brought back in for another hysteroscopy under general anaesthetic. She submitted a complaint to NHS Forth Valley about her treatment covering various issues, including the length of time the referral took, the lack of information about pain and the aftercare following the inpatient procedure.
“I just couldn’t believe how uninformed I was about what to expect,” she said.
“Would I have granted my consent to the outpatient hysteroscopy if I’d known how painful it was going to be? No. Would I have granted my consent to it if I had known that there are alternatives and I could have gone straight to an inpatient one with anaesthesia? No, I wouldn’t have. So all the way along I feel like I’ve consented to things, but I’ve actually not been totally convinced that I know what I’ve consented to.”
NHS Forth Valley apologised to Dr McGarrol for her treatment, however she is still not satisfied and has referred the complaint onto the ombudsman. She said she has “no idea” whether the trust has changed its procedures as a result of her complaint.
Richard Harrison, a researcher based at the University of Reading, who co-runs a specialist lab dedicated to the assessment of pain, carried out a study on hysteroscopies in 2020 after being approached by a concerned gynaecologist working at the Royal Berkshire Hospital.
His study, which analysed the experience of 804 hysteroscopy patients, found 18 per cent reported “severe pain”, defined as a pain score of seven or above out of 10. The average pain rating was four out of 10.
Mr Harrison said the study was “illuminating” for him as a pain scientist.
“So many women scoring above a seven out of 10 is worrying to me and from the perspective of medical ethics, it felt like there were many issues within the medical system, that we were essentially being dishonest with what these patients should expect going into this procedure,” he said.
However, Mr Harrison said he felt like there has been an “apathy” within the medical community towards his findings.
“The rarity is that we have empirical data that shows that this is a painful procedure, but we are not making any adjustments to try and either rectify that or take care of our patients in a substantial way,” he said.
Mr Harrison said he would like to see further studies in this area carried out, as he thinks there may be more medical professionals could to do identify patients who are most likely to experience pain or trauma during the procedure and offer them other options.
Dr Gail Busby, a gynaecologist who regularly carries out hysteroscopies, told i the vast majority of her patients do not experience terrible pain during a hysteroscopy, but added that she does not “deny for one second” or “minimise” the pain of the minority who do.
“It’s a lot to do with patient choice, patient selection – those things are really important,” she said.
Dr Busby said she warns all of her patients about the potential for severe pain and explains all the options available to them, but said the vast majority still opt for an outpatient procedure (where general anaesthesia is not available) as it is faster and more convenient.
She is personally looking into whether she can start offering sedation during the outpatient procedures she delivers, as is routinely done with colonoscopies.
“It’s about listening to patients. It’s about understanding that there is an issue. There’s undoubtedly an issue that needs to be fixed,” she said.
A spokesperson for the Scottish Government said: “NHS Scotland is receiving record funding, and we expect all NHS Boards to provide high quality care that is safe, effective and person-centred. Decisions on treatment, including the use of anaesthetic or analgesia, are for doctors to make.
“Women’s health is key priority for this government which is why Scotland was the first country in the UK to publish an ambitious Women’s Health Plan in August 2021.
“The Plan sets out actions which aim to address women’s health inequalities by raising awareness around women’s health, improving access to health care for women across their lives, and reducing inequalities in health outcomes for women and girls.”
Jonathan Cusack, Clinical Director of Women’s Services at University Hospitals of Leicester confirmed that the Trust was investigating the patient’s complaint and said: “Whilst hysteroscopies are generally a well-tolerated procedure, we are sorry for the distress caused to the patient. We are investigating the circumstances in line with our usual processes and remain committed to helping women make informed decisions about their care.”
A NHS Forth Valley spokesperson said: “Within NHS Forth Valley, women are informed of their choices throughout their gynaecology journey ensuring person centred care. NHS Forth Valley follow the guidelines of the professional bodies of the Royal College of Obstetrician & Gynaecologist (RCOG) and the British Society for Gynaecology Endoscopy (BSGE) regarding the procedure of hysteroscopy.
These professional bodies advocate that this procedure is safe and effective and generally tolerated by most women within the outpatient (OP) setting. Prior to the appointment any woman for this procedure is counselled and offered the choice of either OP or inpatient (IP) hysteroscopy. Remembering a general anaesthetic (GA) can carry additional risks.
We are guided by the above professional bodies and during the OP procedure we do offer local anaesthetic should women wish this. We remind women that some may find the procedure too painful and ask them to alert the clinician and the procedure would be stopped. Time would be taken to discuss alternative options where an offer of a GA would be reiterated.
NHS Forth Valley will invite feedback via patient questionnaire which will be audited to ensure any service improvement can be actioned. Should Ms McGarrol wish to discuss her concerns the service would be more than happy to meet with her.”