The founder of the Campaign Against Painful Hysteroscopy, Katharine Tylko, says please don’t be frightened if you are due to undergo the procedure. Know that you have options and rights – and demand them. Image: Exposure Photo Agency
Caroline remembers screaming. It was like an electric shock which went from her neck to her toes. It was like being tasered in her most intimate area. She could not move because she was scared. She called out to the doctor to stop.
“I can’t believe what happened to me was done in an NHS hospital,” Caroline, 56, says. “I feel that if they were wearing black balaclavas it would have suited what I experienced more. I felt like I was subjected to a very violent assault. That is the trauma that I’m dealing with now.”
Caroline is one of thousands of women who have faced excruciating pain when undergoing a hysteroscopy, a medical procedure used to examine inside the womb, where biopsies may be taken. It is used to detect cancer, pre-cancer and other benign abnormalities.
One in three women face severe pain during a hysteroscopy – rating it at least seven out of 10 – according to the Royal College of Obstetricians and Gynaecologists. That means thousands of women in the UK could be left traumatised by this medical procedure each year.
Campaigners believe the NHS is failing to properly inform patients of the pain they may endure. The NHS website describes it as a “simple” and “relatively quick” procedure which is “not usually carried out under anaesthetic”.
But women who have spoken to The Big Issue describe feeling “violated” during a hysteroscopy. They believe they were unable to give “informed consent” and some have been left with long-term physical and psychological trauma.
“I would have expected what I went through to be done in a torture chamber,” Caroline, who is based in Colchester, says. “I would not have expected it to be in my local hospital and classed as a minor outpatient like you’re going to get your ears pierced.”
Campaigners want patients to be told before the procedure that they may face severe pain, so that they can make an informed decision about pain relief. Local and general anaesthetic is occasionally offered, but mostly patients are told they will manage on paracetamol.
The Campaign Against Painful Hysteroscopy (CAPH), a grassroots organisation founded by women with lived experience, has gathered more than 5,000 testimonies of women with harrowing stories. They believe that thousands more suffer in silence.
A spokesperson said: “Hysteroscopy patients are demanding the option of IV sedation with analgesia. Women are being put through trial by outpatient hysteroscopy with no anaesthesia and no sedation. The wait for a routine NHS hysteroscopy under general anaesthetic is up to a year.”
‘It’s unacceptable that women are still being brutalised by NHS hysteroscopies’
In February last year, the Royal College of Obstetricians and Gynaecologists (RCOG) opened a draft consultation to revise the clinical guidelines for hysteroscopy. The newly updated guidelines are slated for publication later this month. CAPH have put forward their argument for patients to be given the option of safely monitored IV sedation and analgesia, but they fear it will continue to be excluded.
Caroline had a hysteroscopy in August 2022 after a scan showed a tiny lesion at the back of her womb. She trusted the professionals who said the procedure would be simple.
“I had no idea I was going to be put in what looks like an operating room, into stirrups with all these mental tools around me,” she says. “There were five people in the room. All the doctor did was show me the consent form – he said the death rate is nothing, perforation won’t happen, infection is rare.”
Caroline is the only woman who has spoken to The Big Issue who was given local anaesthetic, because she has a stenotic cervix meaning that the lower part of her uterus is practically closed. But even with this pain relief, her experience was “traumatic”.
She claims the nurse held her arm as though they were in an “arm wrestle”. “I lifted myself off the bed. I lifted my neck and my head up and I said: ‘No. You stop what you’re doing right now.’ And the doctor got irked and he sat backwards. And he looked at me as if I was an absolute nightmare.
“And he said: ‘Then we’ll all pack up. We’ll stop what we’re doing and we will have to come back and do all of this another day under general anaesthetic, and then you’ll be in for a day, possibly even overnight.’ The nurse said the worst of the pain is over now. They coerce you into believing them.”
Caroline let them continue. “It was brutal what he did to me,” she says.
Caroline is far from alone. CAPH have spent years lobbying the government and NHS for change. But with four different Women’s Health Ministers in under 10 years – Victoria Atkins was appointed in November – the working relationships are lost and they effectively have to start from the beginning.
What is a hysteroscopy?
Lyn Brown, the MP for West Ham, is a key advocate for the campaign. She says: “I’ve raised this abuse of women 11 times now in parliament. It’s shocking to me that the first time was a decade ago.
“It’s simply unacceptable that women are still being brutalised by NHS hysteroscopies, and that our voices are still being dismissed. The government needs to finally face down vested interests among the medical establishment, listen to experts who are clear that alternatives are viable, and secure systemic change so all women can access the healthcare they need without enduring this trauma.”
A Department of Health and Social Care spokesperson said: “No one should experience unnecessary pain – and women’s voices must be listened to. Our Women’s Health Strategy sets out our ambition that women and girls report improved experiences of care and gynaecological procedures, in particular experiences of pain during procedures such as hysteroscopy and IUD fittings. We are clear that women should be offered information about pain and pain relief options prior to consenting.”
‘It felt like they were trying to rip out my uterus with claws’
Sharon Pallet, 54, had a hysteroscopy six months before speaking to The Big Issue. “Suddenly I just felt this awful, deep searing, burning pain,” she says.
Sharon had previously undergone a gastroscopy and had been given IV sedation. It is a comparable procedure – another form of endoscopy during which a long, thin tube with a small camera inside is passed into your body.
“I rather naively thought I would be given some source of adequate pain control, based on my previous experience, but that didn’t happen,” Sharon says. “It was horrendous.”
Full IV sedation and analgesia is routinely administered in other endoscopies such as a gastroscopy or colonoscopy. But for a hysteroscopy, women are told “taking painkillers such as ibuprofen or paracetamol about an hour beforehand can help reduce discomfort”.
Sharon believes that the NHS is “downplaying the pain” and “misleading” women. She says: “I felt bewildered that they could carry out such an important diagnostic procedure without any pain relief. I felt a deep sense of confusion that medical professionals, who could see that I was in distress and crying during the procedure, still continued with it and continue to do it to other women. I felt shaken to my core. I didn’t think that this kind of thing happened in the medical profession.”
Wendy McLean had a hysteroscopy just weeks before speaking to The Big Issue. She was trying to get answers around her fertility. “It felt like they were trying to rip my uterus out with claws,” she says. “It felt like someone was trying to pluck my teeth out while I was awake.”
NHS Scotland’s website says: “You may experience some discomfort similar to period cramps while it’s carried out, but it shouldn’t be painful.”
McLean, 38, from Aberdeen, became faint as the nurses started asking her questions to distract her. “I felt humiliated,” Wendy says. “It was four strangers and I was in a vulnerable place. I was vomiting. Crying. I felt like I had been violated. I didn’t consent to them doing that to my body.”
All patients sign a consent form – but the women feel they were not given “informed consent”.
A spokesperson for NHS Grampian said: “We cannot comment on individual patient cases but would strongly encourage Ms McLean to contact us regarding any concerns. When a patient does make direct contact with us, we are more than willing to discuss their case with them, including their diagnosis, treatment and any further care they received.”
There are known risk factors for severe pain, such as being post-menopausal or having never given birth naturally, and instances where tissue samples need to be taken, but women say this higher risk of pain is not communicated.
Clare Jackson, 51, had the procedure three years ago after doctors found a polyp in her womb. “You’re naked from the waist down,” she says. “I remember feeling like I was starting to disassociate. I could feel this immense pain. The consultant was getting the nurses and the student doctor to distract me with conversation. I don’t function well like that. The distractions were actually making me more anxious.”
Deb Corteen, who had the procedure in July 2023, adds: “I was hysterical. Somehow, I got through it, came out and was dizzy, sick. There was no informed consent. There was no information about how excruciating this would be.
According to the NHS, “most women feel able to return to their normal activities the following day, though some women return to work the same day” – but for Caroline, Sharon, Clare, Wendy and Deb it has been far harder to move on from their experiences.
Deb says: “If I ever go to the doctor again and get told I have to have a procedure, I will be sitting there and saying to them: ‘You tell me everything about that procedure, and you tell me what sort of pain relief I’m entitled to.’”
A hysteroscopy can save lives and campaigners don’t want to frighten women out of having the vital procedure.
Katherine Tylko, who founded the Campaign Against Painful Hysteroscopy, had a late diagnosis of womb cancer two decades ago. She knows the importance of the procedure and fears women may risk their health – even their life – to avoid having to undergo another hysteroscopy in the future.
Sharon adds: “They need to give proper information on what to expect. You don’t want to frighten women away from having it because it is so important. But they need to give proper information and look at providing effective pain relief. They need to give women a choice.”
It’s rare that there are complications, according to the NHS. But it does identify some risks – including accidental damage to the womb or cervix.
Caroline was suffering so much with pain and bloating after the procedure that she went to a private doctor, having lost trust in her local NHS hospital. “My genitals were numb,” she says. “My skin from my waist to my thighs was numb. Something was seriously wrong.” She faces incontinence and believes something may have been perforated.
‘We’re given stress balls and chit-chat instead of IV sedation’
CAPH is calling for women to be warned about the potential risks. A spokesperson says: “Women across the UK are being tricked into believing hysteroscopy in outpatients causes only ‘mild discomfort’ and that ‘most women tolerate it well’. We’re given stress balls and hairdresser chit-chat instead of the IV sedation with analgesia that NHS colonoscopy patients are routinely offered. Denying women anaesthesia saves the NHS millions. This medical abuse must end.”
It’s no secret that the NHS is chronically underfunded. Its ‘Getting It Right First Time’ scheme has persuaded most English NHS Trusts to do 90% of diagnostic hysteroscopies in outpatients. With the almost total removal of anaesthetists, the British Association of Day Surgery suggests £535 is saved for each procedure done in outpatients.
An NHS spokesperson said: “For the vast majority of women it is clinically better, and more convenient for them, not to undergo general anaesthetic for a hysteroscopy, but as with any procedure patients should have all relevant information as part of the consent process.
“While trusts should already be following the expert guidance developed by RCOG, feedback from patient groups is being used to update guidance to restate the importance of explaining all the options – including pain relief – and listening to women’s preferences.”
Hundreds of women continue to have outpatient hysteroscopies every day. There are around 70,000 carried out in the UK each year, both diagnostic and operative. Until patients are given more choice, thousands will continue to experience pain and ongoing trauma.
“I locked myself away,” Caroline says. “I’ve been with my partner since 2007, but we own our own houses and I refuse to let him come near me. He could talk to me on the phone but he’s not allowed to see me. I couldn’t go out because of the incontinence. I’m self-employed and I lost business. My children had to watch this.”
Weeks after her procedure, Wendy has still not recovered. “I’m not OK,” she says. “I have flashbacks and nightmares. My social life has gone out the window. It has made me anxious. It’s like when you have a bad dream and you get to wake up and live your life. I wake up and I’m not fine. I’m scared to go to sleep in case I dream about it.”
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