I was 19 when I first had sex and found myself in the throes of what I would later find out to be recurrent cystitis. While my friends were enjoying a tour of Paris and patisserie shops, I was sitting in shallow warm water in a dirty hostel bathtub, suffering from a fever. Razor-sharp pain stabbed through my crotch and lower stomach. At the time, I thought I was simply ill. My cystitis would not only intensify throughout my 20s but continue to affect my life and relationships.
Nearly every woman in her lifetime has been struck down by cystitis, a type of urinary tract infection (UTI) that affects the bladder and is often called the "honeymoon disease" thanks to its association with sexual intercourse. Some women, however, are plagued with recurrent cystitis; that is, they experience it more than three times a year. In my case, I seem to develop it every single time I have sex. Before I was diagnosed, I had at least 10 infections a year. Now I'm down to two or three.
The toll it has taken on my life is a difficult one to explain to those who have never suffered from severe cystitis. I've sobbed in my tent at a music festival because the pain made it impossible to get to a toilet. I’ve rushed to the emergency room at four in the morning; missed out on days of pay while on the floor in agony, and had to suffer the indignity of explaining to housemates why I was stuck in the bathroom all evening. I’ve been lucky to have had understanding boyfriends, but it turns sexual relationships into a medicated pressure cooker. I have to take an antibiotic tablet straight after sex; if it is taken too late, a full course of antibiotics is required.
While I often feel alone in my symptoms, up to 20 percent of women suffer from recurrent cystitis. Bethany, 24, first experienced it when she was 16 years old. (She requested to withhold her last name due to privacy concerns.) “My main symptoms were constantly needing to urinate but nothing coming out,” she said. “I couldn’t concentrate and definitely couldn’t make any plans or go to university—I used to just to sit on the toilet. I also experienced extremely painful burning when urinating and had spots of blood as well as severe back pain.”
With the symptoms mainly brought on by sex, it often got in the way of her relationships. “I used to avoid sex with my boyfriend as the aftermath of pain was too bad. It massively impacted my relationship.” A recent study found that 56.8 percent of recurrent UTI sufferers admitted their relationships were negatively affected by the problem, with people taking an average of three sick days due to the illness.
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In the UK, the NHS prescribes recurrent cystitis sufferers with a low-dose preventative of an antibiotic known as Trimethoprim. It is a pricey solution—30 tablets cost £8.80, which works out to £0.29 every time I have sex. But it’s also a worrying one, as repeated antibiotic use can lead to the bacteria—such as the one that causes cystitis—becoming resistant.
The long-term treatment—or lack thereof—offered in the UK is shocking. On one occasion I visited A&E (emergency services in the UK), in the early hours of the morning, I was handed another antibiotic prescription as I sobbed through the pain. No urine tests or blood samples were taken. When I finally saw a urologist eight months later, the doctor proceeded to tell me that other women had it worse. His suggestion was an invasive procedure known as a bladder instillation, in which I would self-insert a catheter to inject a liquid into my bladder to reduce inflammation and discomfort. He warned that it might not even work.
Dr. Philippa Cheetham, a leading urologist in the US, suggests that part of my problem lies in the low number of female urologists. “Negative experiences with a dismissive male urologist is a story I hear all too frequently and is a fairly typical response. I see over 100 women a week with the problem," she explains.
Cheetham says that there were few women in her field when she began 25 years ago, though the number of female urologists is now rising. “I am currently mentoring another female in New York and we hear all the time that women get a less good deal with women’s issues and are often neglected [by male urologists]."
Cheetham suggests a number of treatments that should be offered to women. “One is a renal sonogram,” she said. “This excludes a bladder stone as part of your evaluation as recurrent UTIs can cause infection and infections cause stones. Another is a cystoscopy—a telescope view of your bladder. It takes about two minutes, you won’t feel any pain, and it feels a bit like a smear to evaluate the bladder and the urethra." A cystoscopy can further check for stones, as well as UTI causes by looking at the lining and bladder abnormalities. She also recommends taking Theracran One, a high-potency cranberry extract, though there are conflicting studies on the efficacy of cranberry when it comes to preventing UTIs.
I have now been on Theracran One for three months but am currently single, meaning that I haven't had a flare-up for a few months. When I start seeing someone again, I’ll have to wait and see if the natural medicine has worked or if I need to fork out money for antibiotics for the rest of my life. Until then, something needs to be done so women’s health care is taken more seriously—especially when it comes to our bladders.