Barry Malloy has been left in agony and feels abandoned by the NHS
Barry Malloy has a condition called pudendal neuralgia that causes debilitating pain especially in his backside and says he has been told there’s nothing the NHS can do(Image: Newcastle Chronicle)
A South Shields man is trapped in agony thanks to chronic pain in his pelvic area – but says he has been told there is little the NHS can do. Barry Malloy, a former chef who was used to being on his feet for hours, said he had become a shell of his former self.
He is now looking to raise the cash needed to speak with a private surgeon in Belgium who specialises in a complex treatment for pudendal neuralgia – the nerve issue Barry is thought to have and which has run in his family.
In his case, it makes everything from sitting down to using the toilet painful – and despite the embarrassment of disclosing details like that, Barry said he felt like he had been left without options, expressing his distress at the lack of support he’d felt through the NHS where he said he felt he had been passed from “pillar to post” by healthcare professionals.
Instead Barry said he had spent all his savings investigating alternatives, and he believes heading overseas is now his only hope. He told ChronicleLive how his quality of life had been decimated.
Barry said. “I woke up in severe pain on the morning of Halloween – October 2023. I couldn’t walk and was screaming in pain.” He explained that for months afterwards the cause of his pain was baffling medics. Initially it was suggested that he might have prostatitis – a painful swelling of the prostate that’s often caused by infection.
Barry Malloy has a condition called pudendal neuralgia that causes debilitating pain – pictured on the floor as it is the only way he can sit comfortably(Image: Newcastle Chronicle)
But antibiotics didn’t change matters. He was seen by a range of different medics at the South Tyneside and Sunderland NHS Trust and eventually – it was decided he likely had pudendal neuralgia which is a nerve condition. As such he was referred to the neurology department, but he said he continues to feel as though he has nowhere to turn.
“Two years ago I was a chef working full time. Everything was brilliant. Life was great and then I woke up one day with chronic pain in my pelvis, right leg and right foot. It’s totally changed my life.”
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At his home, Barry showed ChronicleLive how he had to fashion makeshift foam cushions in order to sit down at all – and explained that even simply sitting and watching TV with his partner was something that had been robbed from him.
Barry added: “I’m unable to walk any distance really. My partner has had to take on a second job just to help us get by. They’ve said they can’t really help – I’ve been suicidal, I don’t really want to be here. I wasn’t sleeping, I have lost half my body weight, I have just been living in pain for months now. For me, this shouldn’t have gone on for two years.
He is now hoping to see Dr Renaud Bollens – a Belgian surgeon who specialises in treating the condition. But to get there he will have to pay up to £30,000 – while physically making it to Brussels will be involve a journey in agonising pain.
He said: “It’s my only option.” Barry, who said he has felt “abandoned” by the lack of support available in this country on the NHS added: “I’m really struggling. The pain is getting worse and worse – I can’t get to the toilet without screaming.”
Barry said he felt let down by the NHS He added that one reason he is speaking up is to share just how awful his condition is. “I was working as a chef for twelve years – 50 hour weeks – and fit as a fiddle,” he said. “Until I woke up that day. It [the operation] really needs to be done as soon as possible for me.”
He is a patient under the care of the neurology team at the South Tyneside and Sunderland NHS Trust, and it’s understood he is to be reviewed soon. A trust spokesperson said: “Mr Malloy has undergone some successful surgery through our Colorectal Team, but we know he has continued to face difficulties.”
They said a specialists – including neurologists and chronic pain experts had been working to “try and bring his symptoms under control.” The spokesperson added: “Specialists from our Urology and Orthopaedic departments have also overseen his care as we have tried to diagnose and treat his symptoms.
“This has proven a challenge and we understand the impact this is having on his wellbeing. We hope a solution can be found through the care the NHS can offer.”
Barry has set up a crowdfunding page to support his ambition to head for surgery overseas. To find out more, click here.
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How to access support if you need it
If this piece has affected you and you want to talk to someone, there are helplines and support groups available, many of them 24/7.
The NHS Choices website lists the following helplines and support networks for people to talk to.
- Samaritans (116 123 in UK and Ireland) operates a 24-hour service available every day of the year. If you prefer to write down how you’re feeling, or if you’re worried about being overheard on the phone, you can email Samaritans at jo@samaritans.org.
- Childline (0800 1111) runs a helpline for children and young people in the UK. Calls are free and the number won’t show up on your phone bill.
- PAPYRUS (0800 068 41 41) is a voluntary organisation supporting teenagers and young adults who are feeling suicidal.
- Mind (0300 123 3393) is a charity based in England providing advice and support to empower anyone experiencing a mental health problem. They campaign to improve services, raise awareness and promote understanding.
- Students Against Depression is a website for students who are depressed, have a low mood or are having suicidal thoughts.
- Bullying UK is a website for both children and adults affected by bullying.
- If U Care Share is a suicide prevention and postvention support charity. For free confidential text support text IUCS to 85258.
- James’ Place provide free, life-saving treatment for suicidal men, and those identifying as male, in the North East. Men can refer themselves or be referred by a professional including those working in health and community services, or by a friend or family member.