Doctors Dismissed My Pain: I Almost Died
Sharing Caroline's story
In this long-overdue edition of Hysterical Health, I’m finally sharing Caroline’s story.
It’s one both shocking and familiar all at once: the story of a woman navigating a healthcare system that refuses to listen. After over three years of being ignored, dismissed and left to question her own instincts, Caroline finally got (some) answers - but only after almost losing her life to sepsis.
Part 1: Trial & Error
Caroline is a working mother of two. In early 2020, she was struggling with recurring bacterial vaginosis and sought help from her GP.
The GP thought it could be caused by the hormones in Caroline’s Mirena IUD and advised her to try the non-hormonal copper IUD instead.
Caroline isn’t usually one to simply do as she’s told but ‘with regards to things like that, they’re the ones with the knowledge’, she said.
‘It took me three minutes of research to discover that if you’ve got BV, you probably shouldn’t ever have a copper coil anyway’.
When Caroline attended her IUD appointment, the gynaecologist questioned her, seeming confused by the GP’s recommendation. She said, ‘I don’t normally do this but I’d like to see you in four months because I don’t think this (IUD) is right for you’.
Caroline agreed but was left wondering: if she didn’t think was right, why did she go ahead and put it in?
Unfortunately, the COVID-19 pandemic began soon after, so Caroline never received her follow-up appointment.
Part 2: Spotting The Signs
Caroline hadn’t had a regular period in years and was initially excited to see her cycle returning thanks to her non-hormonal contraception.
‘I was like, oh my god - I get a period once a month, this is brilliant!’
But then they started to get heavier and more irregular. Fast forward 18 months and Caroline knew she wasn’t well.
Her period pains became severe, along with unusual changes in colour. She felt intense fatigue and developed a hard concrete feeling in her thighs.
‘I felt flu-like all the time, just really lethargic. Then from October 2021, I started bleeding every single day. It just didn’t stop - literally 24 hours a day, 7 days a week. Like dark brown and black blood. I was going to doctors and asking about menopause but they told me I was too young.’
When Caroline asked her GP if she should have her IUD removed, she was reassured it had nothing to do with the IUD and was offered a hysterectomy instead.
Caroline’s condition continued to worsen to the point where she couldn’t stay awake. She’d go to bed after work at 5pm, with no energy to spend time with her family.
‘I think I was delirious without even realising it’.
Part 3: Dangerous Dismissal
In early July 2022, Caroline knew she was getting seriously ill. She visited her GP again only to be told there was nothing wrong with her.
Caroline persisted:
‘I think it’s my coil. I’m bleeding all the time, I think it’s making me sick. I feel like I’ve got both a kidney infection and a sinus infection’.
The GP dismissed her concerns, saying it was ‘fairly common’ to contract both these infections at the same time.
There was another mention of a hysterectomy, followed by offering her a prescription for the contraceptive pill to stop the bleeding.
Caroline refused the prescription insisting she didn’t want to mask the symptoms, but rather find out the real cause of the issue.
She was given an antibiotic and spent the weekend delirious in bed, her condition steadily worsening.
‘I knew there was something wrong with me. I knew that I was getting to the point where I might die, but I also thought - I can’t die from my period, can I? Except it wasn’t my period, it was an infection from my coil.’
On Monday morning, she went back and requested a different GP.
This doctor was immediately alarmed by Caroline’s level of pelvic pain and organised blood tests to rule out ovarian cancer.
Caroline was given another antibiotic to ‘keep her out of A&E for 24 hours’ and sent home.
Part 4: Dying But Sane
That evening, Caroline received a call asking her to come to the hospital immediately:
‘Caroline, you have sepsis, your numbers could kill people’.
Sepsis is a life-threatening medical emergency that occurs when an infection in the body spreads. This triggers a chain reaction in the immune system, leading to organ failure and death in extreme cases.
At this point, they didn’t know where the sepsis was coming from but all Caroline felt was relief:
‘I wasn’t even concerned about the fact that I was dying, I was concerned about the fact that I’m not mental.’
Part 5: A Turning Point
That night, Caroline found herself sitting face-to-face with an A&E consultant and, for the first time in a long time, she finally felt heard.
‘He heard me loud and clear when I said the coil is the only thing that changed in my life in the last 3 years’.
After a few measurements and questions, he turned to her and said,
‘Yes, I agree, I think it’s your coil.’
She was overwhelmed with relief.
‘I thought I had a mental health problem, I thought I’d made all this up - I’ve been suffering for so long.’
‘No, you’re very sick. You don’t have a mental health problem, you never have. The thing is, you did know you were sick. I think this is something we have ignored.’
Caroline reflects on that precise moment:
‘I will never forget that interaction ever in my life. I feel completely impacted by a doctor who probably has no idea they definitely saved my life.’
Part 6: Square One
The relief of finally being heard was painfully short-lived.
The gynaecology department disagreed that the IUD was causing Caroline’s symptoms. They argued it had been fitted for too long and any infection is most likely to occur in the first 6-8 weeks.
Suddenly, Caroline felt she’d plummeted back to square one.
The consultant requested a CT scan to investigate further.
Meanwhile, Caroline was set up with an IV drip and spent the next 12 hours waiting on a hallway chair for her scan.
‘I was like a dog with a bone, every half hour I was chasing this CT scan. I have two children at home, I need to get back to them.’
She finally got the scan at lunchtime and received the results that evening.
‘We’ve found a mass in your pelvis’ the nurse said.
‘How big is it?’ Caroline asked and immediately regretted it.
‘Around 7cm’.
At that point, Caroline was sure it was 7cm of ovarian cancer but no one could give her any more information.
She was left alone to wait again.
Part 7: One Answer, More Questions
Eventually, Caroline was sent to the gynaecology unit, where they were finally able to give her an answer:
‘We think it might be a tubo-ovarian abscess and we think it’s coming from your coil’.
Caroline felt instant relief that it wasn’t cancer. The gynaecologist then informed her they were going to remove her IUD immediately.
‘Thank God, I’ve been trying to get here for three years!’ she said.
During surgery, they confirmed the sepsis had originated from a tubo-ovarian abscess which had grown to 6x8cm in Caroline's fallopian tube.
The abscess had ruptured and been left untreated, allowing it to evolve into sepsis and spread a potentially deadly infection throughout Caroline’s body.
The IUD is now gone, but Caroline still doesn’t have the answers she needs:
Was it infected when it was put in?
Did it somehow get infected later on?
How much of this trauma could have been avoided?
Why isn’t anyone talking about this risk for long-term IUD users?
Part 8: Women, Unheard
Caroline spent a total of 8 nights in hospital.
During that time, she was frustrated to see the same patterns happening across the ward: multiple generations of women, all of them unheard.
‘Regardless of your age, they’re not giving you real answers, they’re not giving you dignity’.
‘I really felt like we were just wee lambs, being pushed and told what’s ok and what’s not. Ok, do this and we’ll figure out later if it works or not - I feel really angry about the whole thing’.
Caroline insists her care from the nurses was phenomenal. When they heard her story, they were confused about how she got to this point - three years is an alarmingly long time to be ignored.
One day, they found time to go back through her medical notes.
Caroline was shocked to see previous emails in her file saying her case wasn’t urgent enough for a gynaecology referral. Her request for a scan to locate her IUD had also been cancelled, despite being under the impression she was still on the waiting list.
Caroline went on to request a full copy of her medical records.
‘I wanted to do something about it. I didn’t want my daughter, my niece, anybody - to be told: ‘just use this’, ‘don’t ask any questions about it’ or ‘that’s just normal’.
What she received was disheartening to read. The records were completely inconsistent with how she recalls the chain of events.
The notes weren’t detailed in the slightest, with a distinctly dismissive tone.
For example, the term ‘persistent bleeding’ was used, when in reality Caroline was bleeding non-stop. Notes like ‘patient not keen on having coil removed’ directly contradicted what Caroline had requested.
Caroline had intended to use her medical records to share her journey, but the inaccuracy of her records tell their own story.
Part 9: Chasing Next Steps
Caroline left the hospital on the 1st of August 2022 with a mountain of antibiotics but no care plan, end goal or real information on her next steps.
Her final conversation with the consultant had ended in him casually informing her she was now infertile:
‘You know you’re never having any more children, right?’
‘No, I didn’t know that, but ok.’
‘And no more hormonal contraception, we don’t want to rock the boat’.
For the next 30 days, Caroline was taking antibiotics four times a day, like clockwork.
She fought tooth and nail for a follow-up appointment on the 8th of September. She came prepared with questions about the next steps for her care, assuming she’d need surgery to remove the abscess.
However, all she received was a quick conversation and an ‘open-ended appointment’. This included a letter to her GP advising that ‘Caroline should not be taken the scenic route back to me again’. In other words: this patient requires urgent care and attention.
Caroline felt confused by this outcome. Everyone insists it’s a privilege to have an open-ended appointment, yet she’s received almost no communication since.
‘So I came home and I was like - great that I don’t need surgery, but I’ve still got an open abscess. What now?’
Part 10: Calling for Change
As I publish this on the 12th of April 2024, Caroline is still on a waiting list for her next appointment.
By bravely sharing her story with me, she hopes to raise awareness about potential risks for long-term IUD users.
Caroline’s story encapsulates so many of the challenges faced by women navigating inequitable healthcare systems:
The chaotic trial and error approach to contraception.
The lack of consolidated women’s health knowledge among GPs.
Medical gaslighting and the dangers of dismissing women’s pain.
The widespread use of the contraceptive pill to mask menstrual symptoms.
The dismissal of women’s health concerns as ‘mental’ or ‘anxiety’.
Women only being taken seriously under life-threatening conditions.
Being forced to become advocates for our own care.
Seeing the pattern repeat across multiple generations and contexts.
And SO much more…
The more women like Caroline who come forward and share their stories, the more we can hope to move towards a future where women’s health concerns are taken seriously - the first time, every time.
What’s Next?
Support
If you have an idea to help support Caroline’s awareness campaign, reply to this email or reach out to her directly here.
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