My Sphincter of Oddi journey started on 12th June 2017, when my partner called 999. I was in so much pain in my stomach and back. When I had a blood test, they told me I had acute pancreatitis and needed IV antibiotics and pain relief. While I was in, I had an ultrasound, a CT scan, and an MRCP; they all said gallstones too. This was the first I had heard about it, and they explained the severe pain. I was in hospital for 12 days.

I had my gallbladder out on 5/11/2017; nothing changed. I still had pains. I was admitted again 3 more times. I saw a consultant who thought I had Sphincter of Oddi dysfunction and referred me to Dr Menon. When I met Dr Menon, we went through all my symptoms, and he said I have Sphincter of Oddi type 2. He explained the different treatments and Botox, and we agreed he would book me in. He took the time to explain everything to my partner and me,

I had my first Botox in the summer of 2018; this helped so much with the pain. I now have Botox every 6 months. I even had Botox during COVID.

Although I have learnt to pace myself, I feel like I can’t make any plans , I miss important events as the pain is so unpredictable I had to leave my full time job as I wasn’t able to manage with the pain.The condition is invisible as it’s rare and you can’t physically see it so it often is dismissed.

When an attack is starting my appetite is non existent , I feel sick or I’m actually sick. The pain is so severe it takes my breath away. I try to breathe through the pain but it doesn’t always work. I spend most of the day curled up/doubled over in pain. I take daily pain relief to manage through the day.

This has definitely changed my life, no two days are the same. I will eventually need the sphincterotomy but as long as the Botox is working I will continue.

I’m lucky as I have a lot of support my partner is golden he does everything for me, I could not cope without him. There is support always available from the charity, Facebook groups and our support chats.