Claire’s story – Adhesions

Tell us a little bit about you  

“I’m Claire, I’m 58 years old and I live in North Essex by the sea. I have a love for creativity, especially photography and painting nature and wildlife. Horses have been a part of my life since I was 3 years old, and I spent years professionally working with them. At 50, I shifted focus to sailing, enjoying my time on the water.”

Can you describe when your symptoms started and what they were?

“At 9 years old, I had appendicitis (inflammation of the appendix) that was ignored at home and misdiagnosed by a GP. After several days, I developed peritonitis (inflammation of the thin layer of tissue inside the abdomen) and had emergency surgery to drain half a pint of pus from my abdomen.

Although I physically recovered, something never felt right inside. I constantly felt like my insides were pinching, and I often experienced severe abdominal pain and cramping. My family didn’t believe me and dismissed my pain. As I reached puberty, I endured excruciating period pains rendering me very ill, but once again, I was told I was making a fuss.”

What happened throughout the years?

“Throughout my 20s and 30s, I suffered from ongoing abdominal pain, cramping, nausea, vomiting, diarrhoea, and constipation. Despite seeing multiple GPs, I was always told there was nothing wrong and no one ever referred me for tests. They often concluded my pain was “all in my head”. Deep down, I knew something wasn’t right, but no one would listen.”

“In my mid-forties, I became seriously unwell one night and had to go to the hospital. The pain was so intense I couldn’t manage it anymore. The doctors were perplexed as the usual tests didn’t reveal anything. They decided to do an ultrasound, which finally showed an ovarian cyst. It was removed along with my ovary. The gynaecologist was the first to explain that abdominal adhesions had attached to the cyst and ovary, making it hard to diagnose anything earlier. He also told me the adhesions had caused endometriosis, which was the reason I couldn’t conceive.

After the surgery, things took a turn for the worse. Eventually, my gastroenterologist ordered a CT scan, which revealed a bowel obstruction caused by the same abdominal adhesions. They had twisted my bowel, like a balloon animal. I underwent a bowel resection (an operation to remove a damaged part of the bowel) and anastomosis (the two ends of the bowel are joined together again), and fortunately, that saved my life.”

How are you now?

“Abdominal adhesions have caused me ongoing issues for years. I’m very careful with my diet. I cook from scratch using fresh ingredients and know what I should avoid. While stress can cause the occasional flare-up, I’ve been managing my symptoms and have mostly been well for the last 15 years.

However, family stress over the past 18 months has made things worse. I now experience pain from my right abdomen, extending to my back, shoulder blades, and neck. I finally decided to seek professional medical help.”

“Unfortunately, my GP quickly assumed I had gastritis and prescribed omeprazole (medication that reduces the amount of acid your stomach makes) without reviewing my medical history. When I suggested that adhesions could be the cause of my pain, he dismissed it, making assumptions about my diet and lifestyle that weren’t true.

I saw a different GP who now understands the link between adhesions and my symptoms and is investigating further. I’ve also been referred for physiotherapy to help manage the pain in my back and neck. Thankfully, this new approach is starting to bring me some relief.”

“Despite all the challenges, I’ve led a fulfilled life. When I couldn’t have children, I decided to change my career so that work would be a way of life, not just a job. I worked with horses for 15 years, setting up a stud farm and advancing my competitive career, after leaving a well-paid job in publishing.

I’m happily married to a wonderful man who supports me in every way. I have two amazing stepchildren and three beautiful grandchildren, which is more than I ever dreamed of. While my gut will always be an issue, I have so much love and support in my life.”

Why are you sharing your story?

“I want to share my story because I’ve spent my life being dismissed by medical professionals until I ended up in an emergency case. This started in the 70s and I hoped things would change by the 2020s. Even though modern diagnostics can detect many conditions, abdominal adhesions which cause real, debilitating pain are often overlooked.

If you’re struggling with symptoms like mine, don’t let anyone dismiss your pain. A misdiagnosed appendicitis at age 9 changed the course of my life. You’re not alone, and it’s important to speak up for your health.”

Why do you support Guts UK charity?

“I support Guts UK because there’s a lack of support for those living with digestive conditions and symptoms that can be difficult to diagnose. This charity is crucial in raising awareness of gut problems and helping change the way healthcare providers approach these conditions.

Doctors need to understand how gut health affects the whole person and take every symptom seriously. Guts UK plays a vital role in supporting those who often feel overlooked or misunderstood.”

What are your hopes for the future?

“My hope for the future is that GPs will take a closer look at patients’ medical histories and link them to current symptoms. No matter what gut issues you’re facing, make sure you’re taken seriously. Your pain is real, and just because it’s not visible doesn’t mean it’s not there. Stay open to treatment options, eat well, and know you’re not alone.”

Guts UK is the only UK charity funding research into the digestive system from top to tail; the gut, liver and pancreas.

People are suffering. People are dying. All because of a lack of knowledge about our guts. Guts UK exists to change that. 

With new knowledge, we will end the pain and suffering for the millions affected by digestive diseases. Please consider donating today. Your donation will help fund research leading to earlier diagnoses, kinder treatments and ultimately, a cure.