Sophie’s story
Sophie started experiencing pancreatitis symptoms in 2021. She shares her experiences from hospital and also how her mental health has been impacted.
Tell us a little about yourself
“I’m Sophie and I’m 42. I live in Bradford with my husband, Toby, and our three children; Miles (15), Martha (12) and Rufus (4). I’m a midwife and love baking and walking in my spare time (which isn’t that often!) We also have a cat called Koala Bear.”
Can you describe the symptoms you first began experiencing?
“My symptoms began in 2021. On the day I started experiencing intense pain and a temperature, I’d had a womb ablation (surgical treatment for heavy periods). Hospital thought it was an infection and did a blood test showing raised enzymes. A scan revealed I had gallstones. Even morphine wouldn’t touch the pain.”
Talk us through your journey with pancreatitis
“I was in hospital for a week and was nil by mouth. I asked, “Could I die?”, and the hospital staff explained that a percentage of people do die from acute pancreatitis. Six weeks later in June 2021, I had my gallbladder removed and recovered at home.
In July 2021, history repeated itself just as I was due to return to work. I’d started to go off my food and I felt tired, but I was still recovering from surgery and the first attack. Then suddenly, a thunderclap of pain that felt as if someone was ripping into my insides. I ended up in hospital for another traumatic week.
August 2021 arrived, and I was on my way to a friend’s wedding. Pancreatitis struck again, completely out of the blue, and I got an awful sense of déjà vu. Back to hospital I went. All tests came back normal. I went home. I was absolutely wiped out.
In October 2021, it happened again. I couldn’t believe it. That episode wasn’t as bad, but I ended up in hospital again. I’d had enough. I had to take 3 months off work. I was constantly crying, begging for doctors to help me. I really had to push for a doctor and was sick of seeing someone different every time. I really wanted continuity of care. I gave up alcohol through my own choice even though I wasn’t a big drinker and was sick of being asked, “Are you an alcoholic?”
My consultant was lovely over the next few months and carried out so many tests. I still had no answers. In January, I went back to work. This was when my anxiety started, and I’ve had to adjust my role at work.”
How did this affect your mental health?
“From July to November 2022, I had more attacks, but tests always came back normal. But my mental health was on the floor. I just wanted answers.
I developed panic attacks when visiting hospital. This led me to experience phantom symptoms which often made me think I was having another attack. The anxiety itself was causing me to dread waking up every day.
Through work I saw a psychotherapist for post-traumatic stress disorder (PTSD). I truly believe this saved my life. My friends have also been an amazing support.
I’d heard of pancreatitis in my midwifery training being described as the “worst pain imaginable”. You don’t understand it unless you feel it.“
How are you now?
“I was given a diagnosis of recurrent acute pancreatitis, but I still don’t feel sure. They don’t know the cause for the pancreatitis (idiopathic). It’s now coming up to a year since I’ve had an attack. I feel more resilient and don’t sweat the small stuff.
I find going to the gym really helps my mental health. It’s my happy time. I can’t control what’s going on in my pancreas, but I can control my anxiety. I feel I’ve turned a corner recently. I’ve been back to work on reduced hours, and they are so supportive.”
What are your hopes for the future?
“I’d like doctors to be telling people about Guts UK. I used to spend hours on Guts UK’s website. I would send my loved ones Guts UK’s information as I had no energy to explain what I was going through.
I also hope for better treatment and understanding. Doctors should be more aware and proactive with the mental health implications of pancreatitis.”
Why are you sharing your story?
“Until you’ve had pancreatitis, it’s hard to explain. You feel like you’re in an awful club but develop an affinity with those in it. There is a lot of misinformation out there. Pancreatitis is a very personal experience. Everyone experiences it differently, but we all seem to have one thing in common and that’s the excruciating pain.
It’s nice to know you aren’t alone. I met two pregnant women who had no idea about Guts UK. Being able to share it and talk to them was so nice. If talking helps one person, then I’ll do it.”
There is no effective treatment for pancreatitis. There is no cure.
Guts UK is dedicated to finding an effective treatment, a cure for this misunderstood and underfunded condition. We are building a community affected by pancreatitis, comforted in knowing they’re not alone.
