Lucy Cohen recently had a contraceptive device (IUD) fitted, during which she suffered extremely high levels of pain. Following her experience, she decided to launch a survey to understand how others had found the procedure.
In this interview, Lucy shares her findings and calls for better pain management and improved consent processes, in order to reduce avoidable harm.
Can you tell us a bit about your own experience of having a copper IUD fitted?
In a word - horrific.
I am not able to use hormonal contraceptives, so for me the copper IUD is a good solution, plus it lasts for 10 years which is a bonus. However, the insertion of the IUD was excruciatingly painful. I had asked my GP for some pain relief beforehand, but he told me that ‘paracetamol would be enough’. That absolutely did not turn out to be the case for me.
The fitting took three attempts, each one more painful than the last. Apparently, I have a tilted cervix which makes insertion more difficult, but no smear tests or doctors notes have ever revealed anything like that to me in the past.
In order to get the angle right I had to lie on my side with my leg cocked upwards for a significant amount of time.
I have never felt pain like it. Nothing can describe that deep pain as the ‘sound’ (a medical instrument used to probe), hits your uterus. Or the invasive and violating feeling of having your cervix clamped.
I was not prepared for it and was shocked at the noises coming from my mouth during the procedure. I was in so much pain that I did not recognise my own voice.
It was truly awful.
Shortly after your experience, you launched a public survey, what fuelled you to do this?
I mentioned my experience to my friends and a few of them also said they had had terrible experiences. That’s a small group of people all reporting terrible pain for a procedure that the NHS describes as potentially ‘uncomfortable’.
So, before I started shouting about it, I thought I’d better collect some data to see if my friends and I were anomalies. It turns out we weren’t, not by a long way.
What were women telling you in their survey responses?
The survey questions focused on pain experience, the pain relief offered and how well-informed people felt they had been. I also included a ‘free text’ section for people to share whatever they felt was important.
The stories were unbelievably depressing. Almost 1500 women telling me how much pain they had experienced. I’ve heard people say that it was worse than any vaginal childbirth they went through, or the time they broke a bone or punctured a lung. That’s pretty compelling.
There was story upon story of medical professionals, dismissing their pain and making them feel they were being over dramatic about it.
What also struck me was the number of women who said they had thought that they were the only one this has happened to, and so didn’t say anything. Or that they had felt an urge to say something, but just wanted to put the whole ordeal out of their minds.
That’s a real trauma response and very scary to hear that women are leaving GP office procedures with that experience.
What did your data tell you?
In short, that we have a problem here.
- 93% of respondents reported experiencing pain during their IUD fitting, with more than 25% rating their pain as ‘almost unbearable’ or ‘excruciating’ (the highest levels on an 11 point scale)
- 52.88% reported not being advised to take any pain relief
- 71.18% said they did not feel adequately informed of what to expect.
- 95.33% said that they think that better pain relief should be offered.
This data tells me that women are not being routinely consulted about this sort of procedure, or that they are not being listened to when they report severe pain. It also tells me that we have a blind spot in the medical profession for women’s pain.
There seems to be a culture that the pain and suffering is worth it if the end justifies the means. But surely, we can have the end result with the means being properly managed for pain? Why should women suffer unnecessarily?
What do you think needs to happen to improve care and patient experience?
If you’re going to put something up into a uterus through a cervix, make sure that everyone is fully informed of what it could be like and that the appropriate level of relief for the individual patient is administered.
There needs to be a thorough explanation of the procedure so that women can make informed choices. You can currently choose to accept the risks of the procedure, but at no point are you forewarned of the potential for terrible pain.
If there was proper data that told us that X% of women suffered an excruciating amount of pain having the procedure done without pain relief, then women could choose to re-book when pain relief was involved, or to proceed fully informed.
Many women say they felt violated by the procedure. I for one most certainly did not consent to be in that much pain. I think that goes a long way to explain the emotional trauma that so many women experience from this procedure.
There also needs to be more pain relief available. The procedure should be treated with the gravitas it deserves; aligned with things like colonoscopies in terms of the analgesics and relief offered.
And women MUST be believed when they say they are in pain. This gaslighting of women’s pain has got to end.
What's next for your campaigning in this area?
I’ve set up a petition calling for better pain relief for IUD insertion and removal. Please sign it and help draw attention to these issues.
People also keep reaching out to me and offering help which is amazing.
I’m working with Patient Safety Learning, clinicians and journalists in this field to raise awareness of my data among the relevant audiences. Caroline Criado Perez (author of Invisible Women: Exposing Data Bias in a World Designed for Men) has been fantastic in pushing for participation in the survey and petition.
I’ve even had a medical manufacturer contact me, who are making a device that is supposed to cause less pain upon insertion to tell me about what they do.
I’m just going to keep pushing until we see change and improvement for women.
Is there anything else you'd like to add?
I have been overwhelmed and brought to tears by the stories women have told me. And I feel privileged that they have felt safe enough to share them with me. But I also now feel a responsibility to do something about this situation. So that is what I am doing!
Follow Lucy Cohen on Twitter: @LucyMazuma
Have you had an IUD fitted?
If you’ve had an IUD fitted and would like to share your experience, please visit our community forum here and tell us how you found the procedure.
Are you a healthcare professional involved in IUD fittings or removals?
Can you share your insights on the issue? What are the challenges for healthcare workers trying to manage patient pain? Are there any examples of good practice or resources you can share to help drive improvements?
Related hub content
- Is pain a patient safety issue?
- The normalisation of women’s pain
- Dangerous exclusions: The risk to patient safety of sex and gender bias
- How close are we to closing the gender pain gap?
- Through the hysteroscope: Reflections of a gynaecologist
- Minister acknowledges patients’ concerns about painful hysteroscopies; but will action be taken?