‘I was sick with pain – but doctors thought I was a hypochondriac’: the spreading agony of kidney stones | Kidney stones

Donna, 33, from Suffolk, first developed the telltale signs of kidney problems 13 years ago when she experienced excruciating pain under her ribs. “I was being physically sick because of the pain, and kept going to hospital,” she says. “I was repeatedly dismissed by doctors because they couldn’t find anything on my scans. They thought I was a hypochondriac.”

She was diagnosed with irritable bowel syndrome and told to make lifestyle changes. “I tried different diets but nothing helped, so I learned to live with the pain,” she says. Ten years later, while living and working in Spain, she was finally diagnosed with kidney stones. “A doctor did a scan to check I wasn’t pregnant and couldn’t believe the state of my kidney.”

Donna was rushed in for surgery, where they found a 2cm stone, surrounded by severe infection. “The kidney was so weak it collapsed when they removed the stone and needed to be reconstructed,” she says. “After the operation I was rushed back into hospital with a blood clot and fever, and urine was leaking into my abdomen. I was so ill I nearly died.”

Kidney stones are formed from hard deposits of minerals and salts and cause excruciating pain when they try to pass through your urinary tract. They have traditionally been associated with older men and are most common between the ages of 30 and 60. But new research has shown that the condition is on the rise in all age groups, including young women and teenagers.

According to the NHS, up to one in 10 people will get kidney stones in their lifetime. About half of sufferers will have them again within five years of their initial diagnosis and for those who get complications, they can be severe. Due to the increased use of CT scans, kidney stones are now easier for clinicians to spot than ever before, but other factors, such as rising obesity, weight loss surgery and lack of fluid intake are also responsible for the higher number of cases.

A 6mm kidney stone, the maximum size that can be expelled by a patient.
A 6mm kidney stone, the maximum size that can be expelled by a patient. Photograph: Javier Fernández Sánchez/Getty Images

Doctors told Donna that her undetected stone was likely caused by years of severe and untreated urinary tract infections (UTIs). “I feel because I was young and a woman my voice wasn’t heard,” she says.

According to Dr Lafina Diamandis, a GP and certified lifestyle medicine doctor for Deia Health, UTIs are a common cause of kidney stones, especially in young women. “They’re most likely to cause a type of stone called a struvite stone,” she says. “UTIs make the urine more alkaline and create the perfect environment for stone formation. Women are more prone to UTIs.”

The other two common types of kidney stones are uric acid stones and calcium stones, which can both be affected by diet. “Uric acid stones are associated with a higher intake of animal proteins found in a high-protein diet. This is due to the high purine content found in meat, a chemical formed when we break down protein,” says Diamandis. “A high level of purines can make the urine too acidic, increasing the risk of stone formation.”

The rising popularity of seemingly healthy low-carb diets, such as Keto, may play a role. “Carbs have been demonised in recent years, but we need them in our diets. Ideally, your plate should be 50% vegetables, 25% protein and 25% complex carbohydrates, found in whole plant foods such as beans, oatmeal, quinoa and sweet potatoes.”

She also thinks the consumption of highly processed, fatty foods and lack of fluid intake may be contributing to the rise in kidney stones. These foods are often full of salt and sugar, meaning our kidneys have to work harder. “Salty food increases the risk of dehydration, so if you’re not drinking enough water the risk will increase further.” Some studies have shown that dehydration as a result of global heating is also contributing to the rising number of kidney stone cases.

‘I went into hospital in excruciating pain’ … John Chafer.
‘I’ve completely changed the way I eat’ … John Chafer. Photograph: David Levene/The Guardian

When John Chafer, 60, a local councillor from Essex, first developed kidney stones in his early 40s, he had no idea it could be linked to his diet. “I was quite overweight, I wasn’t drinking enough water and was having lots of junk food,” he says. After recovering from his first bout of kidney stones, “I wasn’t given any preventive advice or told they could come back. I passed the stone so assumed it was over.”

It wasn’t until he was 59 and developed a rare and severe type of stone called staghorn stones, a very large type of stone which can block the entire kidney and lead to sepsis, that he began to make major lifestyle changes. “I went into hospital in excruciating pain,” he says. “Because the stones were wedged in my bladder I was constantly wetting myself, which was so embarrassing.”

A few months later, surgeons removed a life-threatening 7cm stone from his kidney. “A consultant gave me lots of really helpful advice and I’ve completely changed the way I eat,” says Chafer. “I also started up an online group on Facebook for other people who suffer with stones.” He wishes he’d known about the risks sooner. “I now eat loads of vegetables, take cranberry tablets and drink lots of water. I’ve lost more than four stone, too.”

Sophie Medlin, consultant dietitian and director of CityDietitians, says that another risk factor for calcium stones (also known as calcium oxalate stones) is low dairy intake, particularly among young people. Counter-intuitively, then, calcium stones can be caused by not consuming enough calcium.

The National Kidney Foundation in the US recommends having three portions of dairy foods a day to prevent the formation of stones. “If you’re using plant milks, some are better than others,” Medlin says, with oat, macadamia and soy having the highest rates of calcium. Some studies also show that a vegetarian diet that includes dairy products might also be helpful.

‘I dread them returning because the pain is off the scale’ … Anne Cryer-Whitehead.
‘I dread them returning because the pain is off the scale’ … Anne Cryer-Whitehead. Photograph: Graeme Robertson/The Guardian

Other foods that can contribute to calcium stones include spinach, berries, chocolate, wheat bran, nuts, beetroot, tea and rhubarb. Like Diamandis, Medlin points out that balance is key. “We shouldn’t avoid eating these foods but it’s important to consume everything in moderation.” She says that certain nutritional supplements such as greens powders, vitamin C, protein powders and turmeric also increase our risk of kidney stones. “These are all very popular supplements and are often heavily promoted on social media which, again, may contribute to increased cases of kidney stones in young people.”

Alongside diet and infections, genetics play a role in the likelihood of getting kidney stones. Anne Cryer-Whitehead from Milton Keynes believes she may be genetically predisposed to stones, as they have persisted despite a healthy diet. “I first got them five years ago, when I had this excruciating pain in my back and groin,” says the 50-year-old, who is medically retired. “I ended up in hospital and they treated me with lithotripsy, which is a laser designed to break up the stones. It was so painful I could barely stand it. It felt like an elastic band being snapped against you faster and faster.”

While the treatment broke up the stones, Cryer-Whitehead got an infection and was rushed back to hospital. Although she recovered, the pain returned during lockdown and she was admitted to A&E. “I had a stone in both kidneys, one of which wouldn’t pass and got embedded, so I had to have emergency surgery.”

Almost three years on, Cryer-Whitehead is still recovering and says the condition has drastically affected her quality of life. “I have calcium stones and I’m very cautious with my diet. I dread them returning because the pain is off the scale. I’d rather have a five-hour tattoo or go through childbirth again,” she says.

Donna says the emotional distress of the condition is also vastly underestimated. “I have physically recovered from my emergency surgery, but I’m left with PTSD,” she says. “I am now back in the UK and due to see a urologist soon, but I’ve been told it’s likely that I will keep getting stones,” she says. “I don’t think many people understand how serious it can be. I just wish I’d been treated sooner.”

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