A woman who thought she had appendicitis now lives in constant pain because of a little known condition that makes her organs ‘stick together like cement’.
Danielle Kettlewell has already had an incredible 15 operations including a hysterectomy since February 2013.
The 32-year-old suffers from endometriosis and adhesion related disorder which causes the aggressive growth of scar tissue inside the body.
The scar tissue, known as adhesions, causes organs to become glued together, with painfully devastating results.
When Danielle was rushed into hospital in February 2013 with agonizing stomach pain, doctors though she was suffering from appendicitis.
But when they opened her up they found that she was actually suffering from Pelvic Inflammatory Disease.
They cleared out the illness and sent Danielle home, but she was re-admitted complaining of excruciating pain.
Flummoxed doctors at Harrogate District Hospital, North Yorks., performed an incredible EIGHT further operations to try to find the source of Danielle’s agony between February 2013 and September 2016 but couldn’t find anything to pin the blame on.
Eventually Danielle says was told by a Surgeon General Gynecologist at the hospital that the few adhesions that were found “don’t cause pain” and that it was “all in her head”.
Former racing stable groom Danielle, from Ripon, North Yorks., said: “I just couldn’t believe it by that point.
“I couldn’t believe that they were telling me that after everything that had happened.
“It really made me doubt myself. I started to think that it might be in my head.
“But I knew that something was wrong and the pain just wasn’t going away, so I knew I had to see someone else.”
A desperate Danielle sought help from a specialist in Birmingham in November 2015.
She forked out over £5000 for a keyhole Laparoscopy procedure and was diagnosed with endometriosis and adhesion related disorder.
Danielle said: “The pain is horrendous. It’s taken over my whole life.
“It has left me so isolated.
“I had to stop work two years ago and now I’m housebound.
“My mother and my sister help when they can but they have their own lives to live.
“I don’t have any friends anymore because I can’t leave the house for more than half an hour.
“I suffer from depression because of the constant pain.
“I’m taking pain relief that is stronger than morphine now, but even that isn’t enough sometimes.
“In my next pain management review they’re talking about giving me Ketamin – that’s how bad it gets.”
Since her diagnosis Danielle has braved the operating table another four times, taking her total number of ops up to 15 in four years, including a hysterectomy in May 2016 that left her with one ovary and Fallopian tube.
But despite the number of procedures Danielle says nothing has worked for long.
“The last operation I had gave me two weeks of respite. Then the pain was back.
“When I went back to the specialist he told me that he had never seen adhesions come back so quickly and so aggressively in his 25 year of practicing surgery.
“I’ve got another op scheduled for January 2018 where he wants to remove my remaining ovary and Fallopian tube.
“If that doesn’t work then it will be my last. I’m just not willing to put my body through this anymore.
“I will just have to live with the pain and wait until it gets so serious that I need open surgery to possibly remove organs.
“That’s the stage we’re at.”
Danielle says she relies on her husband Tom, who works in IT, for support as she is unable to drive because of the medication she’s on.
She said: “Tom is brilliant. But I can see it affects him too.
“We can’t plan anything. Even going out for a meal in the evenings isn’t an option.
“We tried for years to have children but I think the original Pelvic Inflammatory Disease.
“But since the hysterectomy we can’t think about having a family now.”
Danielle is hoping to raise awareness of adhesion related disorder, and has started a petition on change.org to get the condition officially recognised as a disability.
Danielle said: “I didn’t know the first thing about it until I had it.
“But it affects so many people.
“It can be men, women or young and old. Basically if you’ve ever had a stomach operation it can affect you.
“One of the things I’ve found to help me is online Facebook groups dedicated to ADR.
“I’ve actually made some really good friends and the support and human contact with people who have the same condition means the world to me.”
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