Guest post by Jocelyn Lewis, on behalf of The Campaign Against Painful Hysteroscopy
In April 2006, I gave birth to our beautiful daughter Katy. After finishing breast feeding, my periods never returned, and I was eventually diagnosed as having premature ovarian failure (also known as premature menopause).
For the last thirteen years, I have coped with the challenges that menopause throws at us, both physical and mental. Then, towards the end of 2017, I started experiencing pain and some post-menopausal bleeding. My GP referred me to the local hospital, under the 2-week Urgent Cancer Referral scheme, for a scan and exploratory hysteroscopy.
Before I go any further, I am pleased to say that all the tests showed no signs of cancer, for which I will always be extremely grateful; however, my hysteroscopy was the most painful moment of my life.
What is a hysteroscopy?
Hysteroscopy is a procedure that allows doctors to inspect the inside of the womb (uterus) via a thin, tube-like telescope, with a small light and camera on the end. This is inserted through the vagina and then passes through the cervix into the womb. Fluid is then pumped in to stretch open the womb. Fine surgical instruments can also be passed into the womb to take biopsies or remove fibroids and polyps, if necessary.
It is used as a diagnostic tool for many reasons: post-menopausal bleeding, excessive/unusual bleeding, pelvic pain, repeated miscarriages, difficulties conceiving, diagnosing/removing fibroids and polyps.
In England, around 5,000 women per year have a hysteroscopy, but a recent report suggests this figure is likely to increase to 15,000. Before my appointment I did some research online, and came across various reports warning that the procedure can be extremely painful. I had received the patient information leaflet from the hospital,
which advised that I may experience some ‘period like cramping’ and suggested I take a couple of paracetamol or ibuprofen beforehand, which I did.
On the day of the procedure, I was understandably extremely worried; I was ultimately there to find out if I had cancer. I had a pre-op chat with the consultant, and I asked him on a few occasions whether the hysteroscopy would be painful, bearing in mind I was post-menopausal and I had read disturbing accounts. He repeatedly dismissed all my concerns, and said, ‘no, not at all, at worst something akin to light period pain’. I was not informed of any pain relief options; pain relief was simply not mentioned. I was asked to sign a consent form, taken through to get changed, and asked to climb into the ‘chair’.
Now, as women and mothers, we go through many medical examinations which are unpleasant, and during which we feel extremely exposed and vulnerable. I was, however, in no way prepared for the horrendous pain of hysteroscopy. As soon as the instrument was inserted it felt very uncomfortable, and then the pain hit me. Being post-menopausal, my cervix was closed tightly; he had to force the metal hysteroscope through and into my womb – it was barbaric. I was crying; I couldn’t speak; I could feel
myself passing out.
Two nurses, who didn’t seem surprised at my reaction, were either side of me, trying to calm me down. I now know this is the NHS’s cheap alternative to anaesthetic – ‘vocal-local’ – designed for use in third world countries as a distraction technique. The horror continued as fluid was pumped into my womb.
I don’t know for how long I was subjected to this; maybe 20-25 minutes. Towards the end, the consultant said that he had nearly finished, but if I wanted him to stop, he would, and I would have to have the procedure again. There was no suggestion that I could come back, and have it done under anaesthetic or conscious sedation. I was in no state to be able to discuss anything rationally; I was barely conscious. I was there to see if I had cancer, and that was all I could focus on, so I felt I had no choice but to allow him to complete the procedure.
When it was finally over, I was helped back to a side room to get dressed. I then made my way to the recovery area, where I sat shaking for an hour or so. My body had gone in to shock. My partner, who thankfully had come to the appointment with me, was horrified. I eventually tried to walk to the door to go home, but after a few steps felt that I was going to faint and had to rest before finally getting back in the car. Once home, I went straight to bed and sobbed.
A couple of weeks later, I went online to look at other women’s accounts of barbaric hysteroscopy procedures, and came across The Campaign against Painful Hysteroscopy (CAPH).
The aims of the campaign are:
- Full written information about the hysteroscopy/biopsy procedure, including the honest risk of severe pain
- Safe and effective pain relief
- A genuine CHOICE of no anaesthesia, local anaesthesia, safe monitored conscious sedation, epidural, general anaesthesia
This would ensure all women had the full facts to enable them to make an informed choice about how their bodies are treated during a hysteroscopy – a requirement following the recent legal ruling on informed consent (Montgomery ruling).
CAPH has submitted freedom of information requests to all English NHS hospital trusts, and the information regarding NHS pain audits suggests that a significant percentage of patients (20-25%) reported severe pain during an outpatient hysteroscopy.
Why is this happening? Well, NHS trusts are currently financially incentivised to perform at least 70% of hysteroscopies as outpatient procedures rather than under general anaesthetic. It is promoted, by mainly male doctors, as being a ‘well tolerated’ procedure, despite very little research. Patient-reported outcome measures are not taken as a matter of course. Most women who have joined the CAPH Facebook group were never asked to provide a pain score; some women have subsequently been diagnosed with PTSD and, for others, the experience has resulted in them refusing future gynaecological procedures, including smear tests.
Some clinics do take risk factors for pain (endometriosis, adenomyosis, painful periods, previous cervical surgery, painful smear tests, anxiety, depression, vaginismus, sexual abuse, previous traumatic gynae experiences, post-menopausal women, or women who haven’t given birth vaginally) into account, but most don’t. Ignoring these factors and issuing leaflets which simply recommend over the counter painkillers is putting many women at risk of severe pain through ‘trial by outpatient hysteroscopy’.
By contrast, it is worth noting that patient information for testicular biopsy, from the British Association of Urological Surgeons, recommends a choice of general or spinal anaesthetic. Patients undergoing colonoscopy and endoscopy are also routinely offered a choice of pain relief/sedation. Are women assumed to have higher pain thresholds? Or are we just expected to put up and shut up? Surely one barbaric outpatient hysteroscopy is one too many?
If you have had a similar experience, the campaign would be extremely grateful if you could spare a few minutes to complete our anonymous survey – the more data we can collate, the better, to ensure pain-free gynae in the future.
You can also help by signing and sharing the petition – over 49,000 people already have.