Written Evidence from The Campaign Against Painful Hysteroscopy [WRH0037]
End the GENDER PAIN GAP in women’s reproductive health care,
Specifically in WOMEN’S WOMB ENDOSCOPY – AKA HYSTEROSCOPY
A community interest group lobbying for women to have the same EQUAL ACCESS to effective anaesthesia for women-only endoscopy (aka hysteroscopy) that men are offered for all endoscopies.
We have lobbied and worked with the Royal College of Obstetricians & Gynaecologists and the British Society for Gynaecological Endoscopy.
In Parliament we have been helped by MPs from 4 political parties including Women’s Health Ministers Jackie Doyle-Price, Nadine Dorries and Maria Caulfield.
Our long-term champion is Lyn Brown (Lab, West Ham) who has spoken 9 times in the House of Commons and Westminster Hall about the scandal of brutally painful women’s-only outpatient endoscopy done with NO anaesthesia or sedation.
Twitter - @HysteroscopyA
Facebook – the Campaign Against Painful Hysteroscopy; closed and public groups
Endoscopy of the womb. It is the most common NHS outpatient gynae procedure. It is an important part of reproductive healthcare.
To diagnose or exclude womb cancer in most cases of post-menopausal or abnormal vaginal bleeding. To diagnose and remove polyps and small fibroids. During IVF.
https://cks.nice.org.uk/topics/gynaecological-cancers-recognition-referral/ Around 8000 new womb cancers are diagnosed each year in the UK.
The NHS ‘Getting It Right First Time’ Maternity & Gynaecology Report recommends that 90% of diagnostic hysteroscopies with biopsy (e.g. to rule out cancer) are done with the patient awake in stirrups with a bucket in outpatients, usually with no anaesthetic, just hairdresser chit-chat (aka vocal local) and paracetamol/ibuprofen from home (if the patient received a leaflet in time).
NHS Getting It Right First Time recommends a target of 50% operative hysteroscopies (e.g. mechanical or electro-surgical removal of small fibroids) are done with the patient wide awake without sedation. The patient is not told that injections to the cervix will not anaesthetise pain at the top of the womb.
https://gettingitrightfirsttime.co.uk/surgical_specialties/maternity-and-gynaecology/
NHS patients – both men and women - having colonoscopies and gastroscopies are routinely offered safely monitored IV sedation+analgesia. This greatly reduces the risk of severe pain from an invasive surgical procedure.
Women having hysteroscopy (endoscopy of the womb) are routinely denied the option of IV sedation+analgesia and are routinely put through Trial by Outpatient Hysteroscopy/biopsy with just ‘distraction technique’ and over-the-counter medication. Sometimes gas-and-air or injections into the cervix are given – but usually only after the patient is in severe pain.
According to the Royal College of Obstetricians & Gynaecologists (RCOG) 1 in 3 outpatient hysteroscopy patients experience SEVERE PAIN of 7/10 or more during NHS outpatient hysteroscopy without sedation.
The RCOG statistic comes from a benchmarking study of 77 NHS hospital hysteroscopy clinics performed by the British Society for Gynaecological Endoscopy.
https://www.ejog.org/article/S0301-2115(23)00291-9/pdf “Quantitative analysis showed that 1829 (35.5%) women reported procedural pain between 70 and 100 mm.”
We have collected 4,000+ detailed stories of horrendously brutal outpatient procedures, which have left many women with PTSD. Thousands of these stories are available to read at www.hysteroscopyaction.org.uk Just today a patient reported how after a totally unexpected and very painful procedure she had to climb down from the stirrup chair and step into her own blood, then try to clean herself up. We hear these stories every day.
With our Italian colleagues we’ve gathered a petition of 58,000 signatures asking the UK Health Minister to give womb-endoscopy patients fully informed CHOICE from a range of anaesthesia – local, regional, general, IV sedation + analgesia - for an invasive and potentially severely painful endoscopic surgery.
The experience of thousands of UK women coerced into severely painful and traumatic endoscopy+biopsy of the womb with NO sedation, NO anaesthetic and often NO analgesia – just verbal distraction and a ‘stress ball’ or health care assistant’s hand to hold.
The disparity between the routine provision of IV procedural sedation+analgesia for NHS gastroscopy/colonoscopy vs. NO routine provision of IV procedural sedation+analgesia for WOMEN-ONLY hysteroscopy.
The British Society for Gynaecological Endoscopy who write the guidance for NHS hysteroscopy clinical protocols erroneously suggest that women find outpatient hysteroscopy without sedation ‘acceptable’ because they are accustomed to having painful menstrual periods and prefer to endure a 1 in 3 risk of SEVERE pain rather than the inconvenience of missing time away from work or childcare.
CAPH believes that the real reason for a target of 90% NHS diagnostic hysteroscopy to be done in outpatients is that we are a CASH COW, who can save a cash-strapped NHS millions of pounds annually. We note that the same trick is not being applied to colonoscopy/gastroscopy, which men undergo as well as women.
We were shocked to read in the NHS GIRFT Maternity and Gynaecology report [Table 9, Notional Financial Opportunities] that £6.6 million p.a. could be saved if 75% of endometrial ablations (burning off the womb lining) could be done with the woman awake. We fear that NHS financial pressures are blinding gynaecologists to the severity of pain that 1 in 3 hysteroscopy outpatients suffers.
The barrier to early diagnosis of womb cancer due to many women refusing to repeat a horrendously painful procedure and NO timely provision of IV sedation+analgesia, regional or general anaesthesia.
To end the way NHS hysteroscopy patients are tricked into a quick, cheap and nasty NO anaesthesia procedure which causes 1 in 3 women SEVERE pain and many thousands lasting PTSD, which prevents them from returning for vital gynae cancer checks.
Convince the following NHS health-policy decision makers that hysteroscopy patients have a legal ‘Montgomery’ and General Medical Council right to an informed choice from a range of effective anaesthesia including safely monitored IV sedation + analgesia that is routinely offered for colonoscopy, gastroscopy and other endoscopies.
Thank you for the chance to highlight and, hopefully end the awful experiences of thousands of women coerced into outpatient womb endoscopy with NO sedation and NO anaesthetic.
“This is the 10th time that I have spoken in this House about the completely unnecessary pain and trauma that women are subject to when they undergo hysteroscopies. Women who need pain relief are simply not being given it. They are being patronised, belittled and, frankly, betrayed. Effectively, they are bullied into accepting treatment so painful and damaging that they would never have agreed to it had they known what was coming.
I first spoke about how this issue needed to be resolved 10 years ago, at the behest of a constituent who came to my surgery to talk to me about her experience. Frankly, I am horrified that precious little seems to have changed since then. I will share a few of the recent stories that women have sent me since the last time I spoke about hysteroscopies in this place. I have had to choose very carefully: the number of women who have written to me is large, but my time this afternoon is short.”
“It is a pleasure to serve under your chairmanship, Sir Mark. I thank my hon. Friend the Member for West Ham (Ms Brown) for securing this debate, and for her tireless campaign on the matter. It has been 10 years with almost 10 debates, and she is still going. Numerous Ministers have committed to making this a priority. As we have heard, there have been some improvements, but nowhere near enough to make a difference to the lives of women. I praise the incredible contributions from the hon. Members for Thurrock (Jackie Doyle-Price) and for Strangford (Jim Shannon), and my hon. Friend the Member for York Central (Rachael Maskell).
As we have heard, a hysteroscopy is a procedure used to examine the inside of the uterus. It involves dilation of the cervix, sending fluid into the uterus to expand it so clinicians can examine the uterus and the fallopian tubes, and the use of surgical instruments to examine the inside of a woman. It is an essential tool for diagnosis and treatment of many conditions affecting women, including unusual bleeding, pelvic pain, recurrent miscarriages, difficulty getting pregnant and many more. When I had my hysteroscopy, I had had several miscarriages and I was desperate for a baby. When I was offered this procedure for further investigation, I read every side of the leaflet and looked into it. Not only did I take paracetamol; I took ibuprofen, to ensure that I did not have the “little discomfort”.
I turned up and there was a lovely nurse, who was very softly spoken. A nurse stands next to the patient to talk them through it, and holds the patient’s hand. If it is a “slight discomfort”, the whole process of having someone standing there trying to be a guide through it, is worrying. It is the most excruciating thing anyone can go through. It may have been a 10 on the scale. I do not understand how even slightly lower than that could be acceptable for any human being.
I was asked things and the nurse kept talking to me, but I could not respond. I was in so much pain. Because I was so desperate for that baby, I would have walked over broken glass with bare feet. I did think about continuing through the pain, but luckily I passed out and the procedure ended. It is not acceptable in this day and age that women have to go through that level of pain for healthcare.”
Parliamentary research papers for debate - https://researchbriefings.files.parliament.uk/documents/CDP-2023-0024/CDP-2023-0024.pdf
September 2023