A mother-of-five has revealed she lives in constant pain due to a condition which causes her organs to stick together ‘like cement’.
Samantha Leyland suffers from Adhesion Related Disorder (ARD), which means aggressive growth of scar tissue fixes together organs that are not usually connected.
As a result of this scar tissue’s damage, Samantha has already lost her right kidney, parts of her bowel, and undergone a hysterectomy. Her bladder and baby’s placenta even became attached during her fifth pregnancy.
And she finds herself caught in a vicious circle, as any life-saving surgery she needs as a result of the adhesions will inevitably lead to more scar tissue and complications down the line.
Now registered disabled, Samantha says this awful condition, which she was diagnosed with in 2010, has changed her life completely.
Samantha Leyland, from Staffordshire, was diagnosed with Adhesion Related Disorder (ARD)
Adhesions are the body’s natural response to surgery or trauma but in some patients this process spirals out of control and the body cannot stop producing them
The 41-year-old says she wants to raise awareness about the impact of her condition, which she says is rarely talked about and understood.
Samantha, from Uttoxeter, Staffordshire, said: ‘My organs are stuck firmly together like cement. They are supposed to be free-flowing, but mine are just stuck together with scar tissue.
‘I’ve needed to have six major surgeries up to now due to the condition. Every time I have surgery it creates more adhesions. I do think about it every day.
‘It’s got to the point where now I’ll only have surgery if it’d be life saving, so I take medication and have to live with constant pain.’
The 41-year-old suffers from an aggressive growth of internal scar tissue which fixes together her organs
‘My kids have only really known me as being poorly’ says Samantha, pictured holding her son Charlie, 6, with the rest of her children (left to right) Tyler, 13, Danielle, 22, Demi-Lea, 10 and Joshua, 11
‘I thought it was trapped wind’
Samantha says she was totally unaware of any issues until her first day back in work in March 2010 following the birth of her fourth child in September 2009.
What began as tummy pains resulted in emergency surgery, which revealed parts of her bowel were gangrenous from a constriction caused by adhesions.
The former bookmaker manager said: ‘I started getting severe pains in my tummy. At first I thought it was trapped wind.
‘I was crouching down on the floor at work. I rang the doctor – they told me I needed to be seen at hospital, so I went to A&E.
‘The pain was absolutely horrendous. It was like really severe trapped wind and nausea and it kept coming in waves.
‘At first the doctors weren’t sure what it was. I was in absolute agony.
‘The next day my blood pressure started dropping. I had a CT scan and the doctors said it looked like something was wrong with my right kidney and that my stomach was massively inflamed.
‘I had emergency surgery and woke up in intensive care the next day. The doctors told me that scar tissue had constricted my bowel and it had turned gangrenous, so they’d had to take out quite a bit of my bowel.
The former bookmaker manager has needed to have six major surgeries since her diagnosis
Samantha’s condition has resulted in the loss of her right kidney and parts of her bowel as well as a hysterectomy
‘I was just overwhelmed, I didn’t understand. They weren’t sure whether the scar tissue had come from having my appendix out 10 years ago of from my C-section.’
Just six months later, after a slow recovery from her life-saving surgery, Samantha says she began suffering with stomach pains again.
With doctors suspecting problems with her kidney, Samantha went back under the knife – but this revealed yet more adhesions.
‘My adhesions didn’t show up on scans.
‘The doctors decided they would take out my right kidney, but when the surgeon went to take it out they discovered it was stuck to my gall bladder and scar tissue had started to stick together other organs as well.
‘They managed to remove my right kidney and the adhesions at the same time, but afterwards I suffered internal bleeding so needed surgery again.
‘Then we knew I had ARD.’
More operations
By the time Samantha became pregnant again with her fifth child, she had had three major surgeries.
However, her condition resulted in the placenta attaching to her bladder – and after a c-section delivery of baby Charlie in August 2011.
She then lost more of her bowel and had to undergo a hysterectomy, aged just 35 years old.
And Samantha, who loved socialising, says that the condition has resulted in a complete transformation of her life as she was forced to bcome registered disabled from 2012.
‘I try to be strong through it all but it does knock you,’ she said. ‘I know I will never get free of it.
‘I’ve got massive scarring that runs from underneath by breasts down to my pelvic bone.
She is now speaking out about condition which she says is rarely talked about
‘I know if I eat the wrong foods, sometimes even the right foods, then I will cause another bowel constriction, and I can’t have a stoma to help because the surgery would make the adhesions worse.
‘It does upset me. I feel like I’ve lost my life. I’ve lost friends and my social life. My kids have only really known me as being poorly.
‘I used to love going out and socialising. Now I don’t see anybody.
‘But I think every day, “I’m alive.” I might be in pain, but I have the kids. If I didn’t have them I probably wouldn’t even get out of bed.’
And now Samantha wants there to be more open discussion about the effects of adhesions and for other sufferers to feel they are not alone.
Samantha said: ‘The condition isn’t really talked about, people don’t know enough about it even though it isn’t that rare. Mine is an extreme case. People need to know more about it and it needs to be taken seriously.
‘If you’re suffering with adhesions, try to find a good doctor who believes they cause pain, and there are some really good support groups online to talk to other people who actually get it.’