TW: This article features medical gaslighting, medical cPTSD and discussions of the mirena coil IUD procedure that many who have experienced it may find traumatic.
This week, I sat in the GP’s surgery with my son as she explained his care in child-friendly language; “Pain is the body’s way of letting you know it thinks something isn’t quite right.” The simplicity of such a statement was striking.
Our bodies are complex, yet they have yet to evolve to override pain that has positive outcomes – we still ache after exercise, bleed after vaccinations and wince with the dental hygienist. We generally accept a degree of pain in exchange for our health and bodily autonomy and contraceptive control are undeniable health benefits.
But how can we make informed choices, when pain experienced by AFAB people is minimised, scoffed at or completely denied?
Following an article by Caitlin Moran, the BBC’s Naga Munchetty shared her own traumatic experiences surrounding pain and the coil. As a result, AFAB people have shared their stories in print, radio and online.
Those affected are demanding a change in approach; after her own distressing IUD insertion, Lucy Cohen has collated over 1000 stories and her petition to increase access to appropriate pain relief during IUS/IUD insertion and removal currently has over 10,000 signatures. Pain relief is certainly a step forward, but is merely acknowledging people are in unnecessary pain enough?
My own experiences highlight how access to pain relief does not address the root cause of the issue – AFAB people are too often denied access to the information needed to make effective individual choices and our experiences of healthcare can be arduous. Without information it’s hard to advocate for ourselves, however this can become very difficult when in pain.
After giving birth, I sat with a GP as he explained he would not refer me for a sterilisation. The doctor asked if my partner consented to this? Did I know what I wanted? Had I considered what I would do if my children died?
I had developed depression and cPTSD due to health issues during pregnancy – the mental health issues caused by pregnancy were the very reason I was denied care. This is echoed in many stories; people having their suffering acknowledged but being offered no relief. However, the GP did offer one glimmer of hope… had I considered the Mirena coil?
Use of Mirena coil (IUD) is steadily increasing in the UK. They are quick to fit (appointments last 15-20 minutes), over 99% effective, can reduce heavy flow in periods and reduce NHS input as they last between 3-5 years. Given this information, it was hard to argue against it. I was told of the risks but assured that these occurred infrequently.
I was not told that the NHS provided financial incentives to GP surgeries for prescriptions of long-acting reversible contraceptives, encouraging GPs to improve awareness of them. Can we trust guidance given under pay-for-performance programmes? At what point does our pain become an acceptable price to pay?
The NHS website states: “Some people might find it painful, but you can have a local anaesthetic to help.” The clinician fitting my IUD told me “this may be a little uncomfortable” but did not offer pain relief. I gasped and my sight went fuzzy, almost losing consciousness as the IUD was placed in my uterus. The staff were cheery in an attempt to verbally get me through, “All done. You’re bleeding a little bit, but it’s ok.”
At 6 weeks post-partum and breastfeeding, the staff had failed to identify that I had a retroverted uterus: the tissues offered no resistance as the IUD tore through my womb. I shuffled off the bed and said thank you, embarrassed and as Naga Munchetty said, felt “violated”.
The pain exceeded that felt in childbirth, another event where pain is to simply be endured. Cervical sweeps, internal examinations, even stitches – how many of us grit our teeth as we are told things are ‘a bit uncomfortable’?
After almost 18 months of respite, I started to bleed with a pain so intense I fainted regularly. At a check up, I was told that the coil must have fallen out, I must not have noticed. However, I knew my body.
After all, “Pain is the body’s way of letting you know it thinks something isn’t quite right.” Two external ultrasounds found nothing. I screamed, then apologised to the nurse who attempted to find it with an internal ultrasound. After bleeding for weeks, it was found during an x-ray; my coil had passed through my uterus, destroyed a fallopian tube and was now nestling near my intestines.
I was to have surgery – I was given Tramadol and had to work and care for my family with my reproductive organs shredded, bleeding and in pain for a further 5 months before my surgery.
The entire ordeal culminated in permanent changes in my body.
Thankfully my surgeon did an amazing job repairing my uterus to such a degree that if I had wanted more children I could carry, although delivery would have to be via a planned Caesarean section.
However the damaged fallopian tube would have to be removed. I laughed and explained that’s what I’d wanted in the first place. Ironically, getting the coil did lead to my sterilisation. The surgeon was sympathetic, explained that there was no reason for me to ever have been denied the surgery and removed the other fallopian tube, too.
I have scars from the surgery externally and internally, adhesions that pull and ache at unpredictable times, reminding me at least once a day of that 20 minute appointment. My periods are now visceral reminders.
But the worst effect I’ve been left with is mental; the loss of agency, self-control and lack of concern have left me unable to evaluate my own pain. If my body tells me something isn’t right, I’ve been trained to ignore it.
Until we are seen as people first and foremost, given autonomy over our care and trusted by clinicians over our own experiences, any offer of pain relief is merely a sticking plaster on a gaping wound.
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