“It’s like my insides are being ripped out” – hysteroscopy guidelines are not enough

Wendy McLean was about to start her seventh IVF cycle when her doctor told her she needed a hysteroscopy, a procedure to look inside her uterus.

“It was sold to me as a pap smear test, basically. A thin, narrow camera inserted into the cervix.

“It will only take a few minutes. You won’t need any painkillers. You’ll be perfectly fine,” she said.

Wendy, 38, took over-the-counter painkillers before the outpatient procedure at Aberdeen Royal Infirmary in case it was uncomfortable, but it didn’t prepare her for what happened.

“Clawed, like sharp nails”

“It felt like a hot poker, like my insides were being ripped out. I think I once described it to someone as being scratched, like my insides were being torn out with sharp nails.”

Wendy said she lost consciousness twice, vomited and asked for the procedure to be stopped.

It was only through research online that she discovered that thousands of other women had had similar experiences with painful hysteroscopies without anesthesia.

NHS Grampian said it was sorry to hear about Wendy’s experience and encouraged her to contact its feedback team.

“It shouldn’t be happening,” Ms. McLean said. “I never realized it happened to so many people. I thought I was a rarity, that I was different and awkward and I was embarrassed.”

What is a hysteroscopy?

Hysteroscopy is a procedure to examine the inside of the uterus by passing a thin, telescope-like device through the cervix.

It is described as the “gold standard” in the diagnosis of gynecological conditions, including cancer.

It is used to investigate problems such as heavy periods and postmenopausal bleeding. Doctors may also perform biopsies and remove fibroids or polyps.

According to the Royal College of Obstetricians and Gynaecologists (RCOG), a third of people having a hysteroscopy report pain levels of seven in ten or more.

It is noted that patients should be offered local or general anaesthesia for the procedure and their medical history should be taken into account, including trauma or difficulty with smear tests.

But despite the RCOG producing new clinical guidelines promoting pain relief and choice, many women say they are not being offered these.

The procedure has been stopped

May Hooper was due to have an ultrasound scan to look at post-menopausal bleeding at Stobhill Hospital in Glasgow in July 2022.

During the procedure, she was told that further testing was needed, but she said she was not told she was going to have a hysteroscopy or offered any pain relief.

“It’s indescribable,” she said. “I really felt like I was in a medieval torture chamber. That’s what it felt like. I just can’t believe they do that to women. I had every reason in the world not to do that.”

Ms Hooper asked for the procedure to be stopped and she was rescheduled, this time under general anaesthetic. The 73-year-old complained to her health authority, NHS Greater Glasgow and Clyde (NHSGGC).

She is now fighting for women to receive more information about the risks of pain and pain relief options, including general anesthesia.

“It’s a very important diagnostic procedure, for sure, but it doesn’t have to be painful. It’s 2024, we’re not living in the 17th century anymore.”

The NHSGGC told BBC Scotland News it would not comment on any individual case, but was following all appropriate national guidance while working to ensure patients’ needs were met as treatments progressed, with alternative pathways available if necessary.

Dr Lucky Saraswat is a consultant gynaecologist in Aberdeen who trains doctors to perform hysteroscopies. She says the procedure is not painful for the vast majority of women, but it is important for patients to know they are in control.

She said: “We just need to help people make an informed choice about how they want to do it.

“Some people don’t want to have anesthesia because it’s not without risks either. That’s why many people choose to have surgery as an outpatient procedure. Some choose to have anesthesia.”

Campaigners say the new Green Top clinical guidelines minimise the risk of pain patients may experience.

Dr Geeta Kumar, consultant gynaecologist and vice-president of the RCOG, said they had listened to patients’ concerns.

“Clear and accurate information, both written and verbal, must be provided, both at the time of referral and at the intervention appointment,” she said.

“This will help a woman make an informed choice, including whether she wants to proceed with the procedure and, if so, her preferences for treatment setting and pain relief options.”

Katharine Tylko of the Campaign Against Painful Hysteroscopy said: “It’s not going to have any impact, except for a few very conscientious and compassionate gynaecologists, young women who will say, ‘We want decent care for our patients.’

“These guidelines are not mandatory.”