An extended version of the story published in Broadly by Vice on 16th January 2019.
If your doctor told you to take two paracetamol 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 diagnoses 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 to be safe, 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. I thought, this feels strange, but ok. But then the pain started and 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, and as the biopsy was taken I felt a stabbing electric pain spread from my insides and across my entire body. I shouted out, “Fucking hell!” Afterwards, as I was panting and sweating, 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? It’s hard to feel bold with water running down your legs as they hand you a sanitary towel the size of your shoe. But in the days and months that followed I couldn’t shake the feeling that something was off. Why wasn’t I given pain relief? But what happened to me is not unusual, and in fact, many women’s experience of hysteroscopy is far worse than mine.
“I was hit with this indescribable pain, like a nerve pain but twenty times over. 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,” says Lorraine (66) from Leicester, who prefers not to give her surname as she might pursue legal action. “I told the doctor afterwards that if childbirth was a 10 on the pain scale, but that was a 15 to 20. He did not seem at all concerned or bothered.” Lorraine’s counsellor has since diagnosed her with PTSD from her experience: “I’m having nightmares, and actually seeing things in the day. I keep seeing this man,” she says, referring to the doctor.
Pain, it seems, is a routine part of hysteroscopy. The dentist will give you a shot before starting to drill—pain relief is available and common. So why does the NHS continue to send women to have their wombs poked and prodded on paracetamol? And why, when women are in obvious pain, do doctors ignore them?
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”. In a case like Lorraine’s, the guidelines say the procedure should be stopped and options for pain relief discussed, with options including gas and air, stronger pain medication, conscious sedation, or a up to and including a general anaesthetic.
The current guidelines from the British Society for Gynaecological Endoscopy’s (BSGE), the body overseeing hysteroscopy, does acknowledge that it “can be associated with significant pain.” Consultant Gynaecologist Justin Clark, Vice President of the BSGE, told me that hysteroscopies used to be done under general anaesthesia until the early part of this century, when technological advances meant the scope had become small enough to avoid needing to dilate the cervix. “But [the move to outpatient hysteroscopy] has also been driven by patients—by expectations of immediacy of care and getting a timely diagnosis,” says Clark. For women who find the procedure tolerable, this may well be a better choice: “People recognise that admission to hospital can have disadvantages, such as hospital-acquired infections and the risk of anaesthesia.”
Asked about the lack of concern women report about their pain, Clark is not unsympathetic: “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].” Revised guidelines from the BSGE are due in 2020, but a patient leaflet that addresses pain in a far more realistic way was issued on 19th December. The Campaign Against Painful Hysteroscopy, which has collected a well of women’s stories, has created a community via their Facebook page and it’s in no small part thanks to their work, supported by sympathetic voices within the BSGE and MPs, that more attention now seems to be paid to pain management.
Clark stressed to me that patient comfort is of the utmost concern for the BSGE, and their newest leaflet is certainly an improvement in ensuring women are fully informed. But the problem is that this information around pain management, and advice on how to mitigate it, is often not communicated to patients by their treating physicians, or mentioned in the leaflet that accompanies their appointment letter. While the option of a general anaesthetic is sometimes mentioned, the leaflets are individual to each hospital and often do not reflect the nuanced guidelines of the BSGE. Most women will simply be given a given a leaflet that makes light of any potential pain and go in trusting that two paracetamol and a stiff upper lip is all that’s required. Clark acknowledges this variation may mean not all women get the full picture: “It’s incumbent on hospitals to make sure their information leaflet is valid, and that they speak to the patient in a clear way.” Most women will trust that their doctors are telling them what they need to know, and not go looking for horror stories on the internet.
Even women who ask directly about the pain ahead of time report that it’s underplayed by doctors, who tell them that most people “tolerate” the procedure well. “When I asked it if would be painful, the doctor and the assistants 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 as she still needs to go back to complete the procedure after it was too painful to endure without sedation. “I wasn’t given the option to make an informed decision.” This attitude from doctors seems typical: “I was told there would be minimal pain like having a smear, and as I’d had children it wouldn’t be a problem. [The doctor said] a local anaesthetic injection into the neck of the womb would be more painful than the procedure, and would prolong the appointment. I decided to grit my teeth and get on with it,” says Liz Vining (65) from Swansea. She describes her experience as barbaric: “I couldn’t believe what had happened to me in the 21st century. 18 months on I still get tearful remembering it.”
The number of women who report their hysteroscopy to be very painful varies, but a is around 20-30 percent. A 2014 study, whose findings are in line with similar studies, found that 20 percent of women described the pain as “intolerable”, 46 percent said “moderate” and 34 percent said “mild”. The pain is usually worse for women who’ve not given vaginal birth, or who’ve gone through menopause. Clark at the BSGE told me that a study of 1,600 outpatient hysteroscopy patients, soon to be published in the British Medical Journal, found that most women tolerate the procedure well: “The acceptability rates are high, over 90 percent. The pain scores [out of ten] are in the region of three to four.”
But it is important to note that this study was just for diagnostic hysteroscopy—entering the uterus with a camera and looking around—and did not include any biopsies or polyp removals. While talking to Clark I realised that the “looking around” part of my hysteroscopy was indeed a three or a four out of ten, but spiked to a nine only during the biopsy. This distinction during clinical research may explain why so many doctors tell patients that hysteroscopy is “tolerable”, but when I was in the stirrups I experienced it as a single event. Consequently, I felt like the 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.”
Consultant Gynaecologist Edward Morris, Vice President of Clinical Quality for BSGE’s umbrella organisation Royal College Obstetricians and Gynaecologists (RCOG), told me that it’s been important to them to listen to women’s experiences ahead of the new guidelines in 2020: “We are aware of some women reporting that they did not feel well informed about the procedure and their options.” Morris told me that women should discuss concerns about pain with their doctors, as an outpatient procedure (without proper pain relief) isn’t right for everyone: “[For example] if she faints during periods because of pain, if she has experienced severe pain during previous vaginal examinations, if she has previous traumatic experience, or if she prefers not to have this examination while awake”. A 2014 study also found that pain may be worse for women who’ve not given vaginal birth or who’ve gone through menopause.
A chilling fact is that hospitals have actually been financially incentivised to perform outpatient hysteroscopies on women. In 2013, the NHS doubled the rates that hospitals would be paid to perform hysteroscopies as an outpatient procedure, and lowered the rates paid for anaesthetised hysteroscopies. The procedure used to be commonly performed under general anaesthetic, until a shift around 2001 in part due to the influence of NHS’s National Clinical Director for Cancer Sean Duffy. In 2001, in response to comments about outpatient hysteroscopy research, Duffy wrote in the British Medical Journal that while a “small proportion of patients do, undeniably, experience considerable pain”, he concluded that for most patients the “minimal discomfort” is worth the convenience of having an outpatient procedure. “Too much emphasis is put on the issue of pain surrounding outpatient hysteroscopy,” wrote Duffy. “A small proportion of patients do, undeniably, experience considerable pain, but most patients do not, and they trade off the minimal discomfort they experience with the convenience and interaction of outpatient hysteroscopy.”
When MP Lyn Brown spoke in Parliament on 11th December she said the NHS’s Best Practice Tariff system encourages quick-and-easy hysteroscopies in a way that prioritises savings over women’s dignity and humanity. Brown said: “The national target is for the risky outpatient hysteroscopies to increase to 70 percent of the total, up from 59 percent. The Department for Health is not working to reduce pain and trauma for women—it is incentivising hysteroscopies without effective pain relief and is taking our choices away.”
Historically, women’s pain is taken less seriously by doctors. One 2001 study found that some doctors believe women have a “natural capacity to endure pain” due to the stresses of childbirth. Deb Drinkwater (56) from Salford says her hysteroscopy took away her dignity, as it left her screaming, crying, and losing consciousness. Drinkwater had previously had a bowel screening, a similar exploration of the back passage where patients are routinely offered sedation (Clark at the BSGE said that colonoscopies and gastrointestinal endoscopies, where the scope goes down the throat, are sedated because the tube goes further into the body and “around bends”). Based on her experiences with both procedures, Drinkwater says she can’t help but wonder if there’s a gender bias: “Colonoscopy is something that both men and women do.”
Drinkwater says she’s really not a wuss: “I know what pain is. I’m not an anxious patient.” But after her hysteroscopy, as she was struggling to stand, she made a nervous joke to the student nurse: “I said, I hope I hadn’t put her off nursing by being in such a state. She said to me, no lie: ‘Don’t worry about it, the woman before you screamed the whole way through it.’”
NHS England performed almost 39,000 “unspecified diagnostic” hysteroscopies last year, and the number is set to rise. 75 percent of women do find having a hysteroscopy bearable, but for the remaining 25 percent 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 understanding when they experience pain—and an awareness that they’re not weak nor even 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.”