Why isn’t the NHS warning women about an exam that can be more painful than childbirth?
EVERY week for nearly a year, Lorraine Shilcock attended an hour- long counselling session paid for by the NHS.
She needed the therapy, which ended in November, to cope with the terrifying nightmares that would wake her five or six times a night, and the haunting daytime flashbacks which turned her into a trembling wreck.
Lorraine, 67, a retired textile worker from Desford, Leicester, has posttraumatic stress disorder (PTSD) — a condition normally associated with combat veterans or victims of terror attacks.
But the grandmother of three instead owes her psychological scars to a routine NHS medical check, which was supposed to help her, not leave her suffering.
In October 2018, Lorraine had a hysteroscopy, a common procedure to inspect the womb in women who have heavy or abnormal bleeding.
Doctors use a device called a speculum — also used during smear tests — through which they insert a metal probe with a camera on the end, called a hysteroscope, into the cervix and womb. Gas or fluid may also be introduced to inflate the womb to give the specialist a better view.
The procedure is designed to check for causes of the bleeding — such as fibroids ( abnormal growths, usually non-cancerous, in the lining of the womb) or smaller abnormal growths called polyps, or cancer. It’s also used for women experiencing fertility issues.
The 30-minute procedure, performed in an outpatient clinic, is considered so routine that many women are told it will be no worse than a smear test and that, if they are worried about the pain, they can take a couple of paracetamol or ibuprofen immediately beforehand.
YET for Lorraine, and potentially thousands more women in the UK, that could not be further from the truth. Many who have had a hysteroscopy say the pain was the worst they have ever experienced, ahead of childbirth, broken bones, or even a ruptured appendix, commonly regarded as the most agonising medical emergency.
Yet most had no warning it would be so traumatic, leaving some, like Lorraine, with long- term consequences. But, crucially, it is entirely avoidable.
Now Good Health, which first raised concerns about hysteroscopies in 2014, has been given exclusive access to Freedom of Information data that shows nearly half of NHS hospital trusts in England fail to warn patients they could suffer severe pain.
The Campaign Against Painful Hysteroscopy (CAPH) — which represents hundreds of affected women, including at least 100 diagnosed with PTSD following the procedure — asked 131 trusts in England whether they warned patients that there was a risk some could find the procedure very painful, and what kind of pain relief they offered.
Sixty-one admitted they did not warn patients about the risk of ‘severe pain’.
The British Society for Gynaecological Endoscopy, which represents consultants performing hysteroscopies, says women should be offered the option of having the procedure under general or local anaesthetic, or sedation.
But the data shows that only 25 of the trusts said they routinely offered general anaesthetic or intravenous sedation (where an anti-anxiety drug is slowly injected into a vein in the arm).
And just seven trusts use the Royal College of Obstetricians and Gynaecologists’ patient leaflet — which tells patients who is most at risk of severe pain and that they can request a general anaesthetic. The vast majority of trusts said they had no plans to start providing the leaflet.
The result is that some women are left so traumatised by the pain they experience that it interferes with everyday life.
Lorraine, who is married to Stephen, 70, a retired factory electrician, went to see her GP after experiencing postmenopausal heavy bleeding, and was referred to her local hospital for further investigations.
A few weeks later, she received a letter offering an appointment for a hysteroscopy, along with a leaflet advising her to take a couple of painkillers before turning up — just in case there was any pain.
There was no mention that she could request a general anaesthetic or sedation beforehand — or that the check could be stopped if it was too painful.
Guidance from the Royal College of Obstetricians and Gynaecologists states that doctors should halt the procedure if a woman finds the pain unbearable, and continue it at a later date under a general anaesthetic or sedation.
This is particularly significant for post-menopausal women such as Lorraine — the Royal College advises they are much more likely to suffer pain because they tend to have tighter cervixes.
This also applies to women who have not had children and women who have had traumatic smears or a previous painful hysteroscopy.
Lorraine says the agony began as soon as the doctor tried to insert the probe.
‘It was the most excruciating pain I have ever felt — and I have had two children,’ she says.
‘I felt sick and faint as the doctor tried to force the probe into my uterus. The pain shot all the way up through my body to my shoulders and neck.’
After five agonising minutes, a nurse tending to Lorraine suggested the doctor stop the procedure as she was in so much distress, which they did.
‘Afterwards, they left me on my own to get dressed, but I sat there in a state of total shock,’ says Lorraine. ‘I couldn’t stop crying.
‘Stephen was just the other side of the screen, but I was so traumatised I couldn’t even call out his name.
‘When he did see me, he was horrified at the state I was in.’
The check lasted long enough for the doctor to identify that Lorraine had polyps in her uterus, which were causing the bleeding. She was told she would need to have them removed at a later date.
But that was far from the end of her problems. In the weeks following she began to experience nightmares, waking up to six times a night in a state of utter terror. ‘I would dream that I was back in hospital having the procedure and racked with pain. Some nights I would wake up screaming, sweating and with my heart racing. ‘ Then, during the day, I started getting flashbacks of the examination. They would come out of the blue. ‘On one occasion I was in the queue for the tills at Ikea and had a sudden flashback. I burst into tears and ran out of the store.’ Lorraine’s GP diagnosed PTSD and referred her for cognitive behavioural therapy to teach her ways to deal with the nightmares, such as visualising a pain-free outcome to the procedure. After nearly a year of counselling, her nightmares reduced to three or four times a week. ‘ I was still getting flashbacks ten times a day,’ she says. ‘I’ve been told by my counsellor that they will probably never go away completely.’ Every year, 10,000 women have hysteroscopies on the NHS. The Royal College of Obstetricians and Gynaecologists says only 10 per cent will experience moderate to severe pain during an outpatient hysteroscopy, but campaigners argue that the figure is closer to 25 per cent
But even if it is only 10 per cent, why is the NHS denying women the right to adequate pain relief?
A general anaesthetic carries a degree of risk but, as Good Health has reported in the past, there is another factor at play, with cashstrapped hospitals encouraged to do more procedures in an outpatient setting to save money.
An outpatient hysteroscopy costs around £197. But a day case involving a general anaesthetic or sedation costs nearly £1,000.
The Government also financially rewards hospitals that boost the proportion of outpatient hysteroscopies to at least 70 per cent. The national average is thought to be around 60 per cent.
Campaigners want these cash incentives scrapped and doctors routinely to record pain scores during an examination, so it can be stopped before women needlessly experience severe pain, then rescheduled to be performed with full-scale pain relief.
Katharine Tylko, of CAPH, says: ‘Doctors are under pressure to do this procedure in an outpatient setting. It means some are inclined to continue doing it when they should really stop.’
Lorraine says: ‘This barbaric process should not be happening.
‘I have two daughters and I dread the thought of them ever having to go through what I did.’
CAPH is conducting a survey to gather more women’s experiences of the procedure at hysteroscopyaction.org.uk