Why aren't there better treatments for cystitis?

For Melissa Wairimu, a video editor in Nairobi, the symptoms started at the age of 21. She was having to urinate constantly, and it burned when she did. Her back hurt as well.

A urine culture test diagnosed her with a urinary tract infection (UTI). "I didn't even know there was something called a UTI at that point," Wairimu says. She was prescribed a broad-spectrum antibiotic for seven days, and told to drink plenty of water to flush things out.

But the symptoms kept coming back, sometimes stronger. The pain in Wairimu’s back spread to her abdomen. She felt tired constantly, yet it was uncomfortable to lie down. “You have that prickly feeling that you have to go to the washroom,” she explains. It would keep her awake. And the inability to sleep worsened the fatigue, which made it hard to keep to her tight work schedule.

Wairimu feels that her doctors didn’t listen. She was told that her UTIs might be caused by sex – though she wasn’t having sex. Doctors seemed in a hurry to make assumptions and prescribe different antibiotics, yet these didn’t resolve the problem. One antibiotic even caused seizures.

Wairimu is sympathetic to the six doctors she saw over the years, who she believes didn’t have enough training on recurrent UTIs. So she had to search out her own information, trawling through the internet and resonating with stories of people in similar situations. This led her to the patient advocacy group Live UTI Free, where she now works.

Wairimu began tweaking her diet and doing a lot of trial and error to see what would keep her symptoms at bay. Four years on, the problem is still lurking, but the symptoms are more manageable.

Visiting doctor after doctor. Not being taken seriously. Getting prescribed treatments that work only in the short term, if at all. These are the shared experiences of Wairimu and others experiencing "complicated UTIs" – defined as those that carry a higher risk of treatment failure – with an estimated 250,000 cases per year in the US alone. Many patients, clinicians and researchers alike are frustrated that there hasn’t been more progress in combatting both regular UTIs and these trickier forms, but they are holding out hope for change.