Clare’s story
Ten days into an in vitro fertilisation (IVF) cycle, Clare started experiencing pancreatitis symptoms. Despite the pain increasing, she worried she was overreacting.
Tell us a little about you
“I’m Clare and I’m 44. I live in London with my husband, Chris, and our two kittens, Monty and Arthur. I am a senior service development officer for children’s services. In my spare time, I love doing embroidery, crafts and Lego.”
What pancreatitis symptoms did you experience?
“Although I know there’s little evidence for it being the case, I believe going through in vitro fertilisation (IVF) could have been a trigger for my pancreatitis and often wonder if there is a hormonal link. I was ten days into a cycle when the symptoms started.
I was at work one lunch and remember not feeling hungry. I knew I had to eat because if I don’t, I struggle with my Bile Acid Malabsorption (BAM) symptoms. I grabbed my lunch and not long after, felt like somebody was pulling my diaphragm tight. The pain was sharp and I couldn’t breathe properly. I was worried I was experiencing a heart attack and left for home on the train. I felt nauseous and the pain was increasing. I used the NHS symptom checker at home and gave it another half hour, but nothing was better, so I rang 111. I did worry I was overreacting.
At hospital, the pain was increasing. Chris and I were laughing saying “Imagine if it was pancreatitis”, as he had been told he was at risk of it. I had tests and for several hours I was having to almost dance around to control the pain! Surgeons told me “You’ve got pancreatitis, you may need surgery in the next 12 hours”. ”
Was there any experience in hospital that stood out to you?
“Everything happened so quick. I was given morphine and a catheter (a tube with a bag on the end to collect my urine). I had no time to think or feel worried. I felt like I had handed my life over to the surgeons. I kept apologising in disbelief for taking up their time.
For two nights, I was on a ward. The doctors were amazing but the nurses, not so much. I asked to go home and despite the doctors being reluctant at first, I was granted my wish. Chris was able to help monitor me. I distinctly remember the nurses upon discharge remarking “maybe you might stop drinking now”. I was furious at their flippant remark. I rarely drink and must watch what I eat and drink to manage my BAM. There needs to be more education surrounding this. Even if my pancreatitis was caused by alcohol, I still deserve kindness and compassion and I am never afraid to advocate for myself. My pancreatitis is still idiopathic, which means there is no known cause.
I was transferred to a specialist hospital where I was put under the care of multiple teams (multidisciplinary care). My scans and tests show no cause for concern and because I’d had my gallbladder removed, I had no gallstones. This hospital have given me excellent care and support, especially in my fertility journey. I have had input in my care plan, and I have frequent check-ups booked in to keep monitoring my amylase levels and triglycerides (these can typically be very high during a pancreatitis attack and can cause pancreatitis).”
How do you feel the future looks for you?
“There’s still a very big question mark around the cause of my pancreatitis. I’m very torn between what decision to make going forward, particularly on my fertility journey. I am worried about experiencing another attack of pancreatitis if I choose to go for another IVF cycle. I feel like time isn’t on my side.”
How are you doing more recently?
“The odd day I’ll get pain. I constantly fear having another attack and I’ll never be able to put the pain into words. “Trapped wind pain on steroids” comes to mind, if I was to attempt to!
There needs to be a lot more research towards pancreatitis and how it is managed. I don’t feel there is no cause for my pancreatitis, and that of others, we just haven’t discovered it yet. The pain management needs significant improvement. I really struggled to go about my daily life when I came out of hospital.”
Why are you sharing your story?
“I already followed Guts UK because of my BAM and when I felt clueless, their information helped me. Before them, very little information I found was written in a way that was accessible to the average person. I couldn’t find any stories like mine when I came out of hospital with pancreatitis so I hope by sharing my story, I can enable someone to feel seen and heard. You don’t have to do it alone.“
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.
