Illustration by Owain Anderson

When Women Are Denied Pain Relief During Invasive Procedures

In the UK, hysteroscopies—a procedure by which doctors examine the inside of the uterus—are routinely performed without any form of pain relief. For some women, the experience can be unbearably painful, and traumatizing.

Jan 16 2019, 5:52pm

Illustration by Owain Anderson

If your doctor told you to take over-the-counter painkillers before coming in for a small medical procedure, what would you expect? As I went in for my first hysteroscopy—a procedure that examines the inside of the uterus with a small camera to explore heavy or unexpected bleeding, pelvic pain, fibroids, polyps, fertility issues, or diagnose uterine cancer—I figured it might be like a smear test, or maybe an IUD fitting. The hospital leaflet I was given prior to the procedure told me to expect period-like cramping. I took some paracetamol with codeine for the pain, and laid back with my feet in stirrups.

As the doctor inserted the scope through my cervix I felt my uterus fill with cold water in order to expand it for the procedure. I thought, This feels strange, but OK. Then it was no longer OK. I hyperventilated as I clamped down on the nurse’s hand. Soon I was unable to keep quiet, moaning in pain. As the doctor performed a biopsy, removing tissue from my uterus to check for disease, I felt a stabbing electric pain spread from my insides and across my entire body. (Hysteroscopies are often accompanied by biopsies—the doctor examines the womb with the hysteroscopy scope before removing tissue for further testing.) I shouted out, “Fucking hell!” Afterwards, the nurse asked me pointedly: “Did you forget to take any paracetamol?”

The nurse’s reaction left me thinking maybe I was unusual. Was I being a wimp? But in the months that followed, I couldn’t shake the feeling that something was off. Why wasn’t I given pain relief? Turns out what happened to me isn't unusual. In fact, many women’s experiences of hysteroscopy were far worse than mine.

“I was hit with this indescribable pain, like a nerve pain but 20 times over," says Lorraine, 66, from Leicester, who prefers not to give her surname as she is currently considering legal action against the hospital that performed the procedure. "It took my breath away. I wasn't able to talk, I couldn't shout out. My legs were twitching, I started to feel sick and I felt hot all over." Lorraine told her physician afterwards that if childbirth was a ten on the pain scale, her hysteroscopy was a 15 to 20. He seemed unmoved. Lorraine's counsellor diagnosed her with post-traumatic stress disorder following the procedure.

She's not alone: for Liz Vining, 65, from Swansea, the experience of having her hysteroscopy was “barbaric”: she tells me that she screamed out in shock when the doctor inserted the scope. After that, she says, her memory is just a blur of pain.

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Pain, it seems, is often a routine part of hysteroscopy. The dentist will give you a shot before starting to drill. So why does the National Health Service (NHS) routinely send women to have their wombs poked and prodded without anesthesia? And why, when women are in obvious pain, do some doctors ignore them?

Although it may seem astonishing that women are routinely being subjected to invasive and painful procedures without anesthesia, it shouldn't come as a surprise: Historically, women’s pain is taken less seriously by doctors.

NHS guidelines state that the pain levels accompanying hysteroscopies vary: Some women feel “no or only mild pain,” but for others it can be “severe.” Although both local and general anaesthetics can be offered by NHS doctors performing the procedure, there's no requirement for them to do so. Many women undergo the procedure without any anesthesia at all. The current guidelines from the British Society for Gynecological Endoscopy (BSGE), the body overseeing hysteroscopy, also acknowledge that it “can be associated with significant pain.”

Consultant gynecologist Dr. Justin Clark of the BSGE tells me that hysteroscopies used to be done under general anesthesia until the early 2000s, when newer, smaller scopes meant that doctors no longer needed to dilate the patient’s cervix. He argues that the move towards performing hysteroscopies as an outpatient procedure, without anesthesia, is partly patient-driven: They can access faster care without the downsides of a hospital stay and the risks of hospital-acquired infections. But he acknowledges that the procedure will be hugely painful for some women. “A minority will have a very unpleasant experience, and if we could identify those women in advance that would be advantageous [so they can be given general anesthesia right away],” Clark says.

Clark stressed to me that patient comfort is of the utmost concern for the BSGE. But not all women undergoing the procedure are made aware of how painful the procedure can be. Informational leaflets vary considerably amongst hospitals: The option of a general anesthetic is sometimes mentioned, but women will often be given a given a leaflet that seems to downplay any potential pain. Leaflets viewed by Broadly variously compared hysteroscopies to period pain, or made vague references to "discomfort" without specifying the pain relief options available to women. This variation may mean not all women get the full picture. After all, most women will trust that their doctors are telling them what they need to know.

Even women who ask directly about pain ahead of time report may find that it’s underplayed by doctors. “When I asked it if would be painful, the doctor and the assistant smiled at each other and told me women get this done all the time,” says Valentina, 34, from London, who prefers not to give her last name for privacy reasons. She feels that she “wasn’t given the option to make an informed decision.” The number of women who report their hysteroscopy to be very painful varies, but a 2014 study of 254 women found found that 2 percent of women described the pain as “intolerable,” 17 percent found it "severe," and 46 percent said the pain was “moderate.”

Clark says that diagnostic hysteroscopies, in which the physician enters the uterus with a camera to look around, are typically less painful than hysteroscopies that also involve biopsies or polyp removals. It makes sense: The “looking around” part of my hysteroscopy was a three or a four out of ten on the pain scale, but spiked to a nine only during my biopsy. This distinction may explain why so many doctors tell patients that a hysteroscopy is “tolerable.” But when I was in the stirrups I experienced my hysteroscopy as a single event—and I felt like doctors had not been truthful about the prospect of pain. Clark conceded this point. “I agree the biopsy is far more uncomfortable that a well-conducted hysteroscopy,” he told me.

Part of the reason that the authorities are reluctant to offer women pain relief may be down to cost. NHS hospitals remain financially incentivized to perform outpatient hysteroscopies on women (under outpatient procedures, the patient typically isn't given pain relief). In 2013, the NHS nearly doubled the rates that hospitals would be paid to perform hysteroscopies as an outpatient procedure. Politician Lyn Brown believes that the NHS’s focus on cost-saving prioritizes money over women’s dignity and has criticized the NHS focus on outpatient hysteroscopies. “The Department for Health is not working to reduce pain and trauma for women,” the LabourMP told Parliament in December 2018. “It is incentivising hysteroscopies without effective pain relief and is taking our choices away.”

Liz Vining. Photo courtesy of subject

Unless change is implemented, many more women may experience this trauma. Hysteroscopy is an important procedure and the majority of of women do find it bearable, but for those who don’t, their experience would be vastly improved if everyone knew in advance they could ask for sedation. If nothing else, being met with sympathy when they experience pain—and an awareness that they’re not weak or unusual if they require pain medication—would go a long way.

Katy Wheatley, 46, from Leicester initially felt shame and blamed herself for not being able to get through her hysteroscopy, even when the pain sent her into clinical shock. “But when I look back at it—they must have seen it so many times. No one in the room reacted when I went into shock. You could tell it was routine for them—that in this room, this is what happens to women.”

There are encouraging signs that health authorities are finally taking women's pain more seriously. In response to the efforts of the Campaign Against Painful Hysteroscopy, a community of survivors pressuring the authorities to pay more attention to pain management, the BSGE issued a statement in December 2018. It read: "It is important that women are offered, from the outset, the choice of having the procedure performed as a day case procedure under general or regional anesthetic... It is important that the procedure is stopped if a woman finds the outpatient experience too painful for it to be continued."

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But for women like Vining, this change will come too late. "I couldn't believe what had happened to me in the 21st century," she says. "18 months on, I still get tearful remembering it.”