When Maria Waters, a 58-year-old GP from Richmond, in Surrey, went for her hospital outpatient appointment last summer, she carefully prepared.
She was booked in to have a hysteroscopy – an examination of the inside of the uterus (womb) using a narrow telescope containing a camera – after experiencing unusual vaginal bleeding, to rule out cancer.
Although she’d never undergone a hysteroscopy, she’d referred many women for them and, as a doctor, she knew it was essential, even if it was likely to be uncomfortable, as it’s generally performed in outpatients, without sedation or a general anaesthetic.
During the procedure a thin tube containing a camera (known as a hysteroscope) is inserted via the vagina and into the uterus, enabling the operator (the hysteroscopist) to see inside.
Saline is circulated through the hysteroscope to open up the womb to make it easier to see.
An hour before her appointment – and as recommended by the NHS – Maria took paracetamol and ibuprofen, and on arrival she explained to the clinic team that she often found smear tests uncomfortable and was worried that she may have to ask them to stop.
Reassured by the gynaecologist that most women could tolerate the pain – even those who haven’t given birth – she went ahead.
But she found the procedure even more painful than she’d feared. In her case, it also involved taking samples of tissue.
Dr Maria Waters had a hysteroscopy after experiencing unusual vaginal bleeding
‘Right from the start, it was extremely painful, like I was being cut,’ says Maria.
‘The toughest part was all the poking around as the hysteroscopist kept removing the scope and reinserting it – four times in all.
‘I really struggled but I thought it would only last a few minutes longer and maybe I could bear it. Then I felt faint and nauseous.’
When the scope was inserted for a fourth time, she lost consciousness and came to with her legs being held up by staff.
‘I had collapsed due to shock – the ten-minute procedure lasted 35 minutes as the team had to wait for my blood pressure to return to normal. I had to spend about an hour in recovery before I was stable enough to leave.’
Over the following days Maria says she bled ‘quite heavily’, and experienced abdominal cramps.
The NHS does hundreds of thousands of hysteroscopies a year – it is the most common gynaecological procedure carried out in outpatient departments, with 263,572 performed in England alone, according to the latest figures. Most (68 per cent) were done in outpatients.
The procedure is performed for many reasons – for example, to investigate infertility or abnormal bleeding, and to examine fibroids (benign growths in or around the womb) or polyps (growths of the inner lining of the uterus).
A hysteroscopy is an examination of the inside of the uterus (womb) using a narrow telescope containing a camera
Hysteroscopies are also often combined with on-the-spot treatments, such as removal of polyps.
Demand is growing steadily, mainly due to the rise in the proportion of older, post-menopausal women being investigated for abnormal bleeding.
Other factors include rising rates of obesity (obesity is linked to endometrial cancer) and high numbers of women on HRT reporting abnormal bleeding (possibly due to oestrogen stimulating the lining of the uterus).
Two years ago, the Royal College of Obstetricians and Gynaecologists (RCOG) published guidelines on outpatient hysteroscopy management.
It said while most women tolerated the procedure, it could cause severe pain and even be traumatic – a third of women rated the pain as 7+ (on a pain scale out of ten), and this was something women should be told before having the procedure.
In addition, the RCOG said hysteroscopists must stop the procedure at either the woman’s request or that of staff, if they considered she was in too much pain.
As well as encouraging women to take simple analgesia beforehand (ibuprofen and/or paracetamol) the guidance set out further options for pain control, such as a local anaesthesia injection into the cervix at the beginning of the procedure or inhaled sedation/analgesia.
And if the procedure had to be stopped, it should be rescheduled, and the next time the woman should be offered intravenous sedation, an epidural or spinal anaesthesia or a general anaesthetic.
Kathleen Ryan, 63, a retired nurse from Hall Green, Birmingham, opted to have a hysterectomy to avoid having hysteroscopies
Yet campaigners say too often these guidelines are being ignored, leaving women needlessly in excruciating pain during what should be a straightforward procedure. As a result, some are even saying they will no longer have these important investigations.
The Campaign Against Painful Hysteroscopy has collected data from thousands of women across the UK – and, as Good Health can reveal, the ongoing survey of almost 8,000 women shows the vast majority (83 per cent) were not told beforehand about the risk of severe pain and, alarmingly, 67 per cent said hysteroscopists didn’t immediately stop when they said they were in pain.
Most of the women (60 per cent) also said they continued with the procedure even though they were in pain, because they didn’t know there was an alternative.
Jocelyn Lewis, co-founder of the campaign, says most women (80 per cent) were unaware that they could even have a general anaesthetic or sedation.
‘We simply want hysteroscopy without the pain,’ she says. ‘It is the only invasive procedure where women are guided – that’s the polite way of phrasing it – into outpatients.
‘Despite what the guidance says, generally speaking, women are told that general anaesthetic and sedation aren’t available, and if they insist on wanting it they’ll have a long wait.’
This is because it would involve them being admitted to a ward.
‘Most of these women, or a significant proportion, are having a hysteroscopy because they’ve got abnormal post-menopausal bleeding, so often they’re on the two-week cancer pathway as well,’ adds Jocelyn. ‘So they are faced with either the outpatient route, where they may suffer, or have a long wait. This is no choice.
‘So many women say the pain is worse than childbirth – some have been diagnosed with post-traumatic stress disorder afterwards.
Hysteroscopy also affects their personal relationships – some are just so traumatised by it, they no longer want to have sex.’
Worryingly, most of the women say they will opt out of any future gynaecological checks.
‘Women refuse smear tests because they’ve gone for a hysteroscopy, and they are so unprepared for it being so painful that they lose trust in the gynaecological service,’ says Jocelyn.
‘So we risk the NHS not picking up gynaecological cancers.’
Alix Marijan, 53, an operations manager from Hanwell, West London, underwent a hysteroscopy last summer and found it so traumatic that she now says she would never repeat it without a general anaesthetic or at the very least sedation. The mother-of-three was referred for the procedure after unusual vaginal bleeding.
‘I have never experienced pain like it,’ recalls Alix. ‘For the first five minutes, I gritted my teeth. But when it came to taking the biopsies, I began to feel sweaty and nauseous – the doctor kept removing the tube and reinserting it, about four times, and I remember the room spinning.
‘I was told I could take paracetamol before if I wished, but I’ve always been fine with smear tests and I have quite a high pain threshold, so I didn’t bother.
‘But I was arching my back with the pain – the nurse and an assistant held me in a position, but it felt like being pinned down.
‘Surely, if a patient is in a great deal of pain, you should stop? The whole thing lasted about ten minutes, but it felt like longer. By the end of it, I was barely conscious.
‘When my partner Steve came to collect me, I was bent over double with horrendous cramping, and cold and shivering, with a headache. He was horrified and asked what had happened. We made it back home before I vomited.’
Like many other women who’ve undergone a hysteroscopy, Alix assumed she was at fault for being unable to tolerate the pain, as she was led to believe most women get through the procedure without a fuss.
‘I now tell anyone I meet who needs a hysteroscopy not to be gaslighted into believing that you are just making a fuss by requesting pain relief,’ says Alix.
‘I truly believe that if the procedure involved a tube and camera going up a man’s penis, a general anaesthetic would be standard.’
Months on, she still feels traumatised by the experience.
‘I would describe the procedure as barbaric and there was a complete failure to warn me about what was about to happen.’
The Campaign Against Painful Hysteroscopy’s objective is not to scare women off from having the procedure – because it’s important, says Jocelyn – ‘We want all women to be offered a real choice’.
‘These horror stories – and I don’t think there’s an alternative way of describing them – are true and they have to be believed, but it is important to recognise they are not the majority,’ says Mary Connor, a gynaecologist from Sheffield.
‘The practice wouldn’t have continued for 30 years if it was unacceptable for most women.’
She has trained thousands of doctors to perform the procedure and points to an audit in 2019 of more than 5,000 British women that found pain ‘for the majority was manageable’.
‘But I suppose the thing that we forget is how vulnerable and disempowered people may feel when they are undergoing procedures. That’s why it’s so important with hysteroscopies to have a patient advocate, whose main job is to alert the hysteroscopist if the patient is in severe pain or distress and can’t, or is unable to, speak up.’
Last September, reports of women’s experiences prompted the RCOG to update its clinical guidance again. For instance, the advice includes using the narrowest possible hysteroscope and the lowest possible pressure of the fluid.
‘It is disturbing to hear about some women’s negative experiences,’ says gynaecologist Geeta Kumar, vice president for clinical quality at the RCOG.
‘If a procedure is traumatic, it can impact a woman’s life for ever. But the procedure is vital for many patients in order to diagnose and treat them.
‘That is why the RCOG encourages all those carrying out hysteroscopies to read and follow our guidance.
‘If we stopped doing outpatient hysteroscopies, it would be a massive disadvantage, not just because general anaesthesia carries additional risks, but because it takes away the choice of setting for many women and can lead to potential delay due to the current length of waiting lists for women waiting for procedures to be done in theatre. Right now, the NHS just doesn’t have the resources to increase that capacity.’
A consultant gynaecologist at the Betsi Cadwaladr University Health Board in north Wales, Dr Kumar has been carrying out hysteroscopies for 20 years.
‘The difficult thing is you can’t predict who will experience the most pain,’ she says. ‘There are certain features that can potentially predict a more painful procedure – if somebody gets very severe period pain or finds smears or speculum examinations painful, then those can be predictors.
‘But it doesn’t always mean that they will not tolerate outpatient hysteroscopy – and it’s important to pre-warn all women and make sure that you discuss the options for pain relief beforehand.’
Maria Waters agrees that choice is key – and with the vantage point of a patient, she says: ‘I always used to tell women that the procedure may be painful, but is usually well-tolerated. I now add that it can be extremely painful for some, especially those who have not delivered a child vaginally.
‘I’m also extra careful to advise them to consider all their options and pain management ahead of their appointments as, during the consultation, there will be little time to discuss and weigh up options and alternatives.’
An NHS spokesperson said: ‘While patients may feel some discomfort during intimate procedures like hysteroscopies, no one should have to experience pain, and all NHS trusts should be following the latest clinical guidance from the RCOG to deliver the best clinical and psychological care for women.
‘Different pain relief options should be discussed with a clinician before any procedure as part of NHS England’s standardised consent forms for hysteroscopy.’
