Living with a chronic UTI: 'The pain feels like I'm sitting in acid'

Caroline Sampson, 60, developed a chronic urinary tract infection (UTI) nearly eight years ago after a minor gynaecological procedure. Her infection is resistant to antibiotics and she suffers from often debilitating symptoms. Here she explains what she believes is needed for a cure for herself and others.

"Simply put, I feel stuck. My life is restricted, I am limited in what I can physically and mentally do. I can no longer work, I can't drive, I can’t exercise, I can’t even sit without pain," says Caroline, from Bushey, Hertfordshire.

Her life is very different now to what it used to be. "I had a lovely job at a major public school where I worked for nearly 25 years. I went to the theatre regularly, I invited friends around for dinner, I went on holiday once a year. I am a very sociable person so having my wings so severely clipped with this condition has been particularly hard for me."

In March 2016, Caroline had a minor gynaecological procedure, and started experiencing what she describes as excruciating pelvic pain the next day.

"When I first presented to A&E they told me I had a UTI. They then started me immediately on three days' worth of nitrofurantoin," she recalls.

Nitrofurantoin is an antibiotic used to treat and prevent UTIs, common bacterial infections that at least half of UK women will suffer from at least once.

Facing UTI antibiotic resistance

"When the symptoms didn't clear up, I persuaded my GP to give me further courses of antibiotics, but the most they could prescribe was seven days. I now know that several short courses are really unhelpful and are likely to build up resistance," Caroline explains.

"When I found a clinic in London which dealt solely in chronic UTIs in November 2016, they put me on their protocol which is long-term, high-dose antibiotics. The theory is that the bladder sheds its cells repeatedly and that by constantly attacking it with antibiotics, eventually you will clear the infection.

"But the bugs can become embedded in the bladder lining, colonise and build biofilms [layers or clusters of microbes] around themselves which makes it very difficult for antibiotics to penetrate. The short courses of antibiotics only clear up the free-floating bacteria, not the bacteria that are embedded in the bladder lining."

Caroline stopped taking antibiotics altogether at the beginning of 2022, when the side effects became alarming.

"The UTI infection is multidrug-resistant and has resulted in the chronic UTI infection I live with. Before contracting a drug-resistant UTI infection, I had experienced less than a handful of UTI infections, which had lasted no more than a few days so this wasn’t an issue for me before the procedure I had."

Caroline describes the gynaecological procedure as being very traumatic, and something she'd rather not go into. UTIs are caused by bacteria entering the urinary tract, with an increased risk when having sex and going through a pregnancy, though the use of catheters and foreign objects in the vagina or urethra could also lead to them.

Insufferable UTI symptoms

"Initially I began to experience thrush and other associated imbalances, then I began to develop neuropathic pain – this felt like severe burning in my legs," Caroline explains.

"It was so bad that I couldn’t rest the duvet on my legs at night. I then developed joint pain which made walking very difficult. After about six years on antibiotics, I suddenly began to develop food intolerances. The most innocuous food started giving me a very upset tummy and diarrhoea. At this point, I was worried that the side effects might be permanent, so I came off all the antibiotics."

Despite having taken them continuously from 2016 to the start of 2022, they haven't helped. "I have tried 11 different oral antibiotics and have received intravenous antibiotics [by injection or through a catheter] on multiple occasions. I have exhausted all possible treatment options."

Now, Caroline still experiences daily cystitis symptoms. "It's a burning and stinging sensation, as though I am sitting in acid or I have a piece of glass stuck," she says.

And, very understandably, the effects of her condition have taken their toll in more ways than one.

The physical and mental toll of a chronic UTI

"This has been an ongoing battle for more than seven years and my mental health really suffers. I am battling intense chronic pain and find it hard to see a light at the end of the tunnel," says Caroline candidly.

"Every single life event has been incredibly traumatic, with the physical and mental strain taking a toll on me. For example, my daughter got married recently, but throughout the wedding, I was anxious about being unwell and being unable to stand or sit for long periods of time."

"There is currently no adequate pain relief for chronic UTIs," she says. "The symptoms are incredibly painful and while I do use a hot water bottle on my abdomen to help slightly, I've had to completely change my lifestyle to cope with this awful illness. I can't go out for very long as I am in too much discomfort.

"Travelling is incredibly difficult for me and I can't do many of the things I would like to do as pain and discomfort restricts me. My diet has also changed dramatically and is really limited now because the antibiotics have wrecked my gut health. So many foods cause a flare up of gut problems."

Due to the severity of her situation, she adds, "Other than having my bladder removed, there are currently no other treatments left for me to try.

"And I won't do this as I don’t think I am physically up to the recovery, and from what I’ve read, it's not guaranteed that it will resolve the symptoms. There is also a risk that the infection can go straight to the kidneys without a bladder."

But there is one thing that might be able to help.

'We need more funding to find new antibiotics'

"We need more awareness about antimicrobial resistance (AMR) and more funding to find new antibiotics," she says, which is something leading scientists are pleading with the government to do. "This is important for us to be able to cure stubborn, chronic infections."

AMR is when microbes (bacteria, viruses, fungi) develop the ability to resist the action of antibiotics that would otherwise kill them off or prevent them from growing. The bacteria that causes our infection is what can be resistant to drugs.

Holding hope for the future

While her family has been there for her, Caroline's constant communication with others in the same situation has helped get her through.

"My family and friends are really understanding but there’s not much more they can do or say to help me now. As this is an invisible condition, I look perfectly okay so people just assume that I am well and I try not to talk about it unless I am with other sufferers," she explains.

"There are support groups for people who suffer from this condition. It is comforting to know that there are so many others in the same boat. I speak to fellow sufferers regularly.

"There is one particular person I speak to every day – we keep each other going as we both understand how difficult life is with this condition."

That said, Caroline explains it can be a double-edged sword, with it easy to be triggered by other people's stories too. "We are all desperate for better testing and treatment options and a cure for this awful illness," she adds.

"I’m telling my story in the hope that it will make people listen and sign the petition so that the government can take action and invest in new, effective treatments so that people like me can finally get our lives back."

Get involved with the #NotInOurLifetime campaign and sign the petition for increased AMR funding here. You can also sign the petition asking for chronic UTIs to be considered in the government’s Women’s Health Strategy for England here.

To find out more about chronic UTIs, see our expert-led explainer here:

What is a chronic UTI? Symptoms, causes, treatments and antibiotic resistance (Yahoo Life UK, 8-min read)

To find out more about AMR, read more here:

Scientists warn STIs could be deadly by 2040: What is AMR and how does it threaten our health? (Yahoo Life UK, 8-min read)