My chronic back pain was dismissed as ‘anxiety' – then my penis went numb & I was left on brink of total paralysis
Mark was left unable to walk and unable to pee for 12 hours before he was diagnosed with a little-known medical emergency, which left untreated, leads to permanent damage
PURE AGONY My chronic back pain was dismissed as 'anxiety' – then my penis went numb & I was left on brink of total paralysis
AS a dad-of-three and manager of a busy butcher's shop, Mark Doe lived a normal life, keeping active and spending time with his kids.
But all that changed when he began experiencing excruciating lower back pain.
5
Mark Doe lived a fairly active lifestyle as a dad of three and manager of a butcher's shop
Credit: Mark Doe
5
But earlier this year, he was found to have Cauda Equina Syndrome, which almost left him paralysed
Credit: Mark Doe
The 36-year-old from Swindon, Wiltshire, was 34 when a painful set of symptoms began.
He started suffering pain across his lower back, pins and needles in his lower extremities, a constant ache and weakness down his left-hand side.
Mark loved his job as a butcher, but found he could no longer stand for long periods of time.
Simple things, such as playing with his kids and bathing himself, also became too difficult.
Mark's past medical history includes hypothyroidism, fibromyalgia, irritable bowel syndrome (IBS), and asthma - but he told Sun Health these were unrelated to his sudden back pain.
In December 2023, eight months after his symptoms started, it all became too much, and he decided to make an appointment to see a neurologist.
During the appointment, he underwent a scan which revealed a small bulge in his L5-S1 joint - also known as the lumbosacral joint - where two regions of the spine connect.
A disc bulge or herniation is generally not considered life-threatening, but can be serious depending on the severity and whether it's causing nerve compression.
Mark says: "It made sense for my symptoms.
"They recommended no further treatment, just to carry on with my pain medication."
Unexpected everyday habits that could be causing your back pain
But Mark's symptoms became worse.
He says: "I was in pain daily in my lower back and legs. The pins and needles became a daily occurrence and I would sometimes feel numbness down my legs.
"I had to use a walking aid on my worse days."
'Docs told me symptoms were anxiety'
Mark made another appointment to see a neurologist - but this time was told his symptoms were related to anxiety.
"I'm on medication for my anxiety and ADHD," he says.
" I told the doctor my symptoms and he discharged me saying it's all my anxiety, despite looking at the previous scan I had a year ago.
"He didn't send me for another scan, just upped my mental health medication.
"I felt really let down and lost, and thought I just had to put up with the symptoms I had."
But just three months later, Mark suffered a terrifying episode of lower back pain that nearly left him paralysed.
It was very bad, I couldn't move with the immense pain.
I would scream out every time I moved
Mark Doe
In March this year, he bent over to pick up a small object off the floor and felt a pop in his lower back. The pain radiated into his buttocks and down his legs, causing pins and needles.
He also felt reduced sensation over his penis, didn't pass urine for 12 hours, and continued having no urge to pee.
He recalls: "It was very bad, I couldn't move with the immense pain.
"I would scream out every time I moved. So my wife, Leah, and kids helped me lie down flat on the floor, rang 111, they asked a load of questions, then said they'd send an ambulance as an emergency.
"They arrived, got me on gas and air and were constantly taking my stats.
"They tried to carry out checks, but I screamed out with tears falling down my face.
"This resulted in a second ambulance being called out that had to bring morphine."
'Could have been paralysed'
Once Mark reached the hospital, doctors suspected he had cauda equina syndrome - a rare but serious condition where the nerves at the very bottom of the spinal cord are compressed.
These nerves are responsible for controlling bladder and bowel function, as well as sensation around the genitals, back passage, bladder and bowel.
Mark says: "Through the night, things got worse.
"I had an MRI scan, then they came and had to catheterise me, I was unable to pass urine, even with a bladder stimulating machine.
"The results of my scan revealed the small bulge had grown much bigger and was crushing my nerves.
"If I'd left it any longer, I could have been paralysed and needing a catheter for the rest of my life."
I wasn't sure whether I'd ever walk again, or even be able to use the toilet
Mark Doe
Mark was diagnosed with Cauda Equina Syndrome, and immediately feared that he'd never be able to be independent again.
He says: "I was very scared when they told me. I wasn't sure whether I'd ever walk again, or even be able to use the toilet."
By this point, Mark's condition had become very serious, and he was quickly told he'd need urgent surgery.
He added: "A surgeon spoke to me and said this had been going on for some time, and I needed emergency surgery.
"I had to fill in a consent form, then within 15 minutes I was in a surgical room.
"The operation was on my L4 and L5 joints, and the surgeon said he was glad I opted for the surgery, as it was very bad."
'Felt humilated'
Mark was in surgery for nearly five hours, and afterwards, overrun with exhaustion and still in a lot of pain.
He says: "Recovery has been very difficult. I was bed-bound for six weeks, had so much pain, and needed a Zimmer Frame to get around the house.
"My daughter was five months old and I couldn't pick her up or hold her.
"I felt very humiliated having to send my older children out of the room each time I needed the toilet, as I had to use toileting aids.
"It not only affected my life but my family's. My wife had to care for me, she would help me wash, dress, and bring me anything I needed, all while caring for a five-month-old, two older children, 14 and eight years old, two animals and the house.
5
Mark has a five-month-old daughter who he's struggled to pick up and hold
Credit: Mark Doe
5
Mark says his early symptoms were dismissed as anxiety because he was taking treatment for that at the time
Credit: Mark Doe
5
Mark isn't the only one who's been affected by what's happened - it's taken a toll on his family too
Credit: Mark Doe
"My eight-year-old struggled with the change in the home dynamics. She refused to enter the room with me at first as she was scared.
"She had to have extra support at school to understand the emotions she was feeling."
Two years on, Mark is still in pain, with aches, shocks, and pins and needles in his lower back, bottom, and legs.
He's since regained feeling in his lower extremities - he was relieved when the catheter was removed.
Mark adds: "I do still have some issues with not knowing if I've finished going for a wee.
"My symptoms haven't affected my relationship with Leah. We have a very tight bond and she's been very understanding and helpful through this whole ordeal."
What is Cauda Equina Eyndrome?
Cauda Equina Syndrome (CES) is compression of the spinal nerves at the tail end of the spinal cord.
These nerves are responsible for controlling bladder and bowel function, as well as sensation in and around your genitals, back passage, bladder and bowel.
When these nerves become compressed it can affect their function, and urgent attention is needed.
But the condition is rare, occurring in one to three in 100,000 people.
CES most commonly results from a massive herniated disc in the lumbar region.
A single excessive strain or injury may cause a herniated disc, however, many disc herniations do not necessarily have an identified cause.
If you have suddenly developed or noticed a rapid change in two or more of the following symptoms within the past week, you should attend A&E immediately. Loss of feeling or pins and needles between your inner thighs or genitals
Numbness in or around your back passage or buttocks
Altered feeling when using toilet paper to wipe yourself
Increasing difficulty when you try to urinate
Increasing difficulty when you try to stop or control your flow of urine
Loss of sensation when you pass urine
Unaware of leaking urine or recent need to use pads
Not knowing when your bladder is either full or empty
Inability to stop bowel movement or being unaware of leaking
Loss of sensation when you pass a bowel motion
Change in ability to achieve an erection or ejaculate
Loss of sensation in genitals during sexual intercourse
Source: NHS
Mark is now having regular physiotherapy, but says there's no short fix for what he's been through.
Doctors have said he may not make a full recovery and may require further spine surgery.
He still has a moderate-sized bulge on his joint, below the spot where he had the surgery.
It's all to do with how long his nerves were crushed for as to how damaged they got, he adds.
He explains: "This has changed my life massively.
"If the doctor I had for the second appointment had sent me for a scan, maybe this could have been prevented or not been so bad.
"Because one of my symptoms was anxiety, doctors jumped to conclusions and said it was that when it wasn't.
"My message to others out there - don't give up, keep on at doctors, don't do it alone and seek advice and help from family friends.
"This has been seriously life-changing and I don't wish this on anyone."
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
BBC News
2 hours ago
- BBC News
Wolverhampton author creates ADHD picture book to help others
An author and illustrator with ADHD has called for her new picture book explaining the condition to be made free to local schools after being inundated with Dempsey, from Wolverhampton, said an online poll she started, offering free copies to three local schools, had received hundred of votes."That went quite crazy," she said. "I was expecting it to be just like five or six locally, but loads of people kept tagging their school on... It's something that could really help."She is now seeking funding to make it more widely available and has approached her local MP's office and councillors for advice. Mrs Dempsey, who creates social media content and blogs as The Dempsey Diaries, was diagnosed when she was 27, during the Covid had felt "different" growing up, but assumed it was because her family were Jehovah's Witnesses and her dad worked as a busker performing as a tap-dancing when she had her own children, she struggled to cope with the demands of motherhood, such as organising packed lunches and getting to school on time."I felt like I was getting worse and couldn't understand why," she said. She described her diagnosis as an "oh, that makes sense now" moment but subsequently found the "novel-sized books" about ADHD too daunting to is now passionate about helping others understand it in a "short and sweet" format."I've made this book specifically for people like me who haven't really got the capacity to sit and read through but need all the information," she said. 'Learning acceptance' So you've got ADHD, NOW WHAT? was written with adults and teenagers in mind and explains topics such sleep problems, masking, and differences between men and women with the hopes to access about £2,000 for all Wolverhampton schools to receive three free copies, then will look at funding to distribute the book further afield."If I'd known this 20 years ago, would my life have been completely different?" she asked."If kids at 12 or 13 realise there's nothing wrong with you, it's just a different sort of brain, they might learn acceptance."She next plans an ADHD book specifically for younger children, and to then focus on something for people with both autism and ADHD. Follow BBC Wolverhampton & Black Country on Facebook, X and Instagram.
Scottish Sun
3 hours ago
- Scottish Sun
My world shattered when ‘kissing virus' left our son quadriplegic – every mum needs to know 4 rules to stop it spreading
Helen Harrison passed a virus to her son in the womb... but by the time she was told about it, it was too late - Alfie had irreversible brain damage MUMS BEWARE My world shattered when 'kissing virus' left our son quadriplegic – every mum needs to know 4 rules to stop it spreading Click to share on X/Twitter (Opens in new window) Click to share on Facebook (Opens in new window) YOU wouldn't think twice about kissing your kids, sharing food with them or perhaps putting their dummy in your mouth to clean it. But a mum is urging parents to be aware that this is in fact, NHS advice. Helen Harrison, 40, was excited to have her fourth child and first son, Alfie. But he was born disabled after she unknowingly caught a common virus that harms unborn babies, and yet, most parents or midwives have even heard of it. 7 Helen Harrison, 40, unknowingly caught cytomegalovirus (CMV) while pregnant Credit: supplied 7 The mum-of-four passed on the common virus to baby Alfie in the womb Credit: supplied 7 Severely disabled Alfie, now six, has cerebral palsy, epilepsy, limited vision and a learning disability due to the virus Credit: supplied Now six years old, severely disabled Alfie has cerebral palsy, epilepsy, limited vision and a learning disability. He cannot walk, stand or feed himself, and is still in nappies. Helen, of Wheathampstead, Hertfordshire, says: 'He can't do anything for himself, and probably never will.' Helen feels she was 'let down' by the NHS, having never been told about cytomegalovirus (CMV) while pregnant, passing it on to Alfie in the womb. Helen, married to Dan, 42, a construction firm boss, tells Sun Health: "I've never walked into a doctor's surgery and seen a poster about CMV saying, don't share your children's food or cutlery, or kiss them on the mouth. "It's the summer months, you wouldn't hesitate to let your child have a lick of your ice cream. "It makes me really cross that you're not warned about CMV. I just feel a bit let down.' It's thought health chiefs don't want to unnecessarily scare parents about a virus that is so common, so easily spread but for most, has little consequences. "Most babies with congenital CMV do not have any symptoms," the NHS website says. But it adds it can 'sometimes' cause problems - ranging from a rash to seizures and problems with the liver. For some, like Alfie, the impact is life-limiting. Up to 4,000 babies are born with CMV every year, according to Dr Helen Payne, a leading CMV researcher at London's Imperial College and St Mary's Hospital. Of those, an estimated 800 have long-term consequences, such as deafness or learning disabilities, while 200 suffer as severely as Alfie. The signs of common virus that could be deadly to babies - and how to spot them in your tot Dr Payne says: "It's upsetting that a condition that is so widespread and profoundly affects some infants is barely known by the public, especially when there are actions that can be done to prevent infection." CMV is a common bug that usually has no symptoms, but for some, may cause the sniffles, a rash or temperature. Professor Hermione Lyall, Britain's leading clinical expert in CMV, based at St Mary's Hospital, says: 'Generally speaking, most of us have it as we grow up and grow older, but it never really does us any harm. 'It only really causes a problem if you are a baby in the womb and you haven't yet developed an immune system, or if you're somebody who's immunosuppressed.' The bug can be passed between people in close contact through bodily fluids, including saliva, urine and faeces. It can therefore spread when sharing cutlery, straws or dummies and from mouth-to-mouth contact, such as kissing. Pregnant women who work closely with children or already have a young family are more at risk of getting CMV, the NHS says. Official advice to pregnant women or those around expectant mums is to follow four important rules (scroll down for more information). 1. Wash hands with soap after changing nappies or wiping kids' noses 2. Avoid sharing food & drink with children, including glasses, straws & cutlery 3. Never put children's dummies in your own mouth 4. Kiss your children on the forehead, not the mouth 'Burst into tears' Prof Lyall says midwives don't receive extensive training on CMV. "We got hold of the main textbook for midwives, and there was about six lines on CMV, and it's not really correct or relevant to the modern world at all,' she says. 'Most people know about avoiding cat litter in pregnancy because you don't want to get toxoplasmosis, or about avoiding soft cheese because you don't want to get listeria. 'But the chances of getting either of these infections are absolutely minuscule, less than 20 cases a year, whereas there are up to 4,000 children a year born in the UK with CMV.' A former primary school teacher, Helen had a 'textbook pregnancy' before Alfie came along. 'He was born in my trousers at the front door of the hospital,' Helen recalls. A crash team rushed to the site and noticed Alfie had a pinprick rash all over his body. Worried about the shock of the freezing December weather, they whisked him away to the Special Care Baby Unit. At first, the doctors and nurses didn't seem too concerned. 7 Alfie cannot walk, stand or feed himself but his 'laughs and smiles' delight his devoted parents and sisters Credit: supplied 7 Helen feels 'let down' by the NHS, having never been told about the virus Credit: supplied But the following morning, when Alfie's father Dan arrived, the couple was ushered into a side room. It's just that total shock. I think I had that naïve belief that it would never happen to me They were told that a brain scan had revealed multiple abnormalities and Alfie's liver and spleen were enlarged. The news was devastating for the young couple. 'We burst into tears,' says Helen, who says they were not treated with compassion. A paediatrician allegedly told Dan: 'You need to sort yourself out and man up. Your wife needs you.' Helen says: 'They started asking lots of questions - what was the pregnancy like? Did I have any food poisoning? 'Did I follow the guidelines of what you should and shouldn't eat? I felt they were blaming me.' With no clear answers, the hospital contacted the specialist infectious diseases team at St Mary's Hospital, London, who recommended Alfie was tested for CMV. His viral load was then discovered to be 'sky high'. He was immediately given medication, which reduced the infection, but could not undo the damage to his brain. Helen says: 'It's just that total shock. I think I had that naïve belief that it would never happen to me.' Dr Payne says that the most dangerous time for a foetus is the first three months of pregnancy. But treating the mum can prevent the virus being transmitted to the baby. 'He laughs, he smiles' She is among experts calling for screening of all pregnant women, as is the case in parts of France, Spain and Greece, as well as in Ontario, Minnesota and New York State. The UK's National Screening Committee has to consider whether a screening programme for any condition is worthwhile - in this case, including whether it will cause alarm to parents. A screening programme for CVM was rejected in 2017 and 2022. The NSC is due to consider testing both mothers and babies for CMV this summer, with an announcement expected in the autumn. Dr Lyall says: 'There's competition from all kinds of things, such as screening for cancer, genetic diseases or metabolic diseases. 'The thing that is very tough for us is the fact that there's an intervention that can prevent the virus from going across and causing damage to a baby, and we're not able to offer that to women because we don't diagnose that the infection is there. "It's only the more severe babies that get picked up, because we're not screening for it, and so it's just not out there that this is something that people need to worry about in pregnancy." The experts are also calling for CMV to be included in the heel prick test given to every newborn baby in the UK at five days, so that those affected can be identified quickly. The charity Action on CMV estimates that the cost of caring for UK children born with the virus is over £750 million every year. That includes direct costs to the NHS and social services, workdays lost by parents plus the expense of therapies and equipment. Helen cares for Alfie full time, but would like to return to work in the special needs sector. I visit the family in their comfortable, detached home, and Alfie seems like a happy little boy. Dressed in a dinosaur T-shirt and leggings, he lies on a play mat surrounded by sensory toys, contentedly gurgling. Though he cannot speak, Helen says he is very communicative. Sometimes Dan and I wonder what Alfie would be like if he hadn't been affected by CMV, would he be running around, terrorizing his sisters? Helen 'He laughs, he smiles,' she says. 'He'll scream and shout if he's not happy. He hasn't got words, but he's definitely got his own voice. "If he's upset, then it takes a while to sort of soothe him. And you wish, God, I just wish he could just tell me what is wrong." Alfie can't eat solid foods, so doctors suggested a feeding peg that would deliver liquid food straight into his stomach via a tube. Helen was against the idea, unless Alfie were to stop thriving. 'We've worked so hard to keep him orally fed,' she says. 'He really enjoys flavoursome foods. Just last night, we were around at my parents' and he was given a spoonful of lemon meringue pie filling, and then he's immediately opening his mouth for the next spoonful. It's just such a joy. 'And it is a social thing as well to eat, so we just don't want him to lose that.' Alfie attends a special needs school where he loves interacting with other children. He is also adored by his older sisters Evie, 12, Millie, 10, and Chloe, eight. "Sometimes Dan and I wonder what Alfie would be like if he hadn't been affected by CMV, would he be running around, terrorizing his sisters?' says Helen. He will always carry the virus, but it is now inactive. In 2019, Helen and Dan did the Tough Mudder 15km obstacle course challenge to raise £5,000 for the charity CMV Action, and since then have raised more. But their main aim is to raise awareness, so that other children and families do not have to face the same heartache. Helen says: "I still do feel quite guilty, because at the end of the day I caught the virus. So what if I hadn't? If I hadn't caught that virus, Alfie would be your average child and wouldn't have to live such a challenging life. 'I don't think that guilt will ever go, I just try and bury it.' 7 Helen and husband Dan want to raise awareness, so that other children and families do not have to face the same heartache as they have Credit: supplied 7 Alfie is adored by his older sisters Evie, 12, Millie, 10, and Chloe, eight Credit: supplied
BBC News
6 hours ago
- BBC News
Mounjaro weight loss jab 'game changer', says Oxfordshire GP
A GP has told the BBC that patients have already enquiring about prescriptions for the "game changer" weight loss drug Mounjaro, after it became available at surgeries in England earlier this Rachel Ward, who is a doctor in Didcot, Oxfordshire, said most people who had been in touch were ineligible for the jabs under strict under NHS weekly injection makes you feel full so you eat less, and can help people lose 20% of their body Clapcott, from Christchurch in Dorset, accesses the injection privately and said it had been "like some sort of magic". Ms Clapcott, whose mother died of obesity related health issues, said she had always previously overeaten - partly due to her ADHD."For me its a constant food noise that goes on in the back of my head - my whole life, I've never been able to wait till I'm hungry," she said."I know what's healthy to eat, I know a body doesn't need however many calories I was eating, but I was unable to stop myself.""For whatever reason, Mounjaro has stopped that."The mum of four said she had lost about three stone (19kg) since starting on the injections four months said it "doesn't make you lose weight", but "gives you a willpower of iron". Dr Ward, who lives in Newbury, said: "I have got many patients who have been really really successful [using Mounjaro] - people who have struggled with their weight all of their life and it has really been an absolute game changer for them."The GP warned that "unfortunately" very few people would meet the criteria to receive a prescription for the jab on the with a BMI of 40 or over (or 37.5 if from a minority ethnic background) and who suffer from four out of five weight related conditions are currently eligible."Already we had people contacting us about getting Mounjaro via their GP, who are not qualifying," Dr Ward jab could be an "opportunity to turn your lifestyle around" she said, adding: "Don't just think that you're going to be able to use the drug and make no other changes, because it wont work in the long term." You can follow BBC Oxfordshire on Facebook, X (Twitter), or Instagram.
