“It was the most horrible experience of my life,” Aliya Chaudhary, 34, recalled her tryst with urinary tract infection during the eighth month of her pregnancy. “It took a toll on my mental and physical health. I lost my appetite and shed at least 10 kgs in a fortnight.”

Urinary tract infection is caused when bacteria enter the urinary tract, with E coli the most common infection-causing bacteria. About 50% of women report urinary tract infections in their lifetime. The total incidence is 5%-10% during pregnancy – making it the second-most common bacterial infection among pregnant women. Urinary tract infections could be impacting millions of women, as estimates say that India might have 48 million pregnancies each year.

In pregnant women, a urinary tract infection is particularly dangerous; it can raise their blood pressure, impact the baby’s health, lead to premature labour, delivery and aggravate the risk of adverse maternal or foetal outcomes.

Pregnant women might also miss early signs of the disease attributing the symptoms to pregnancy, such as frequent urination. Doctors thus suggest routine testing in pregnant women for urinary tract infections through urine tests.

Yet, the topic remains stigmatised in India, and the pain and frustrations experienced by pregnant women with urinary tract infection remain unheeded, women told us and doctors confirm. IndiaSpend talked to four women who suffered from urinary tract infection during their pregnancy.

Painful ordeal

Chaudhary, who hails from Mumbai, was pregnant with her first child in 2019. All was well until she developed low-grade fever and discomfort while peeing. After consulting her gynaecologist, she took a paracetamol tablet. However, the following day, the heartbeat of her baby slowed down and she had to be operated on immediately.

By the time Chaudhary got some relief, she had been fever-stricken for eight days, with severe shivers on the first four. “Even my cesarean delivery was not as intense as my urinary tract infection.”

She recalled, “I had recurring fever even after being discharged from the hospital. A urine catheter was inserted in my body and I was already on antibiotics because of the cesarean delivery. A week had already passed when I told my doctor about the continued stench and the discomfort I experienced while urinating. She told me I should have informed her earlier and prescribed a test and a course of Combiflam and Taxim-o.”

As Chaudhary’s concerns about her infant’s health and the anxieties accompanying a new mother took centre stage, her sufferings slipped into a blur, she said. However, days after recovery, she could still feel the impact of the infection. “Even after completing the antibiotic dose, I lost my appetite, and weight.”

A 2017 study, involving 600 antenatal women, had found preterm labour pains in 6.6% cases of urinary tract infection, and low birth weight of the baby in 3.6% of cases.

Misunderstanding symptoms

Twenty-five year old Saboor Fatima’s urinary tract infection during pregnancy was misdiagnosed.

When Fatima, a teacher, experienced pain while urinating, and smelly urine and discharge, she visited a doctor in a private hospital. The doctor diagnosed her with hydronephrosis, a condition in which either one or both kidneys swell because of urine build-up. “She told me that my kidney was swollen and it will burst if I don’t go to a urologist and get a double-ended device called ureteral stent inserted. It costs Rs 25,000 and would give me relief while urinating. This really scared me.”

Fatima consulted another doctor who said she had a urinary tract infection. She recovered in a week on a course of antibiotics and juices.

Dr Bandana Sharma, a gynaecologist and obstetrician from Lucknow, said that the most common symptom of urinary tract infection is high frequency of urination. “Most women ignore this symptom as the frequency of urination is high during both pregnancy and urinary tract infection. Women often mistake the urinary tract infection symptom for an effect of pregnancy. Hence, a urine culture test is necessary.”

Though the preferable test to detect urinary tract infection is urine culture, Dr Sharma said it is far from affordable for the public, especially in rural and semi-urban areas. “I tell my patients, who are from various villages, to get a urine routine microscopy if the urine culture test is not available or is expensive for them. Through this test, you won’t get extensive details but you will know if there’s an infection.”

Also, “there is a myth that ‘all urinary tract infections will cause symptoms’ – while more often than not urinary tract infections will cause symptoms, there may be certain incidents where the infection can be asymptomatic, that is also a reason why urine tests are done [routinely] during pregnancy,” said Dr Prateek Makhwana, a consultant embryologist, and director at Vasundhara IVF.

“In all our community health centres and primary health centres, urine routine microscopy is available as it is less costly. Urine culture is also available at most places, but in some areas if it isn’t, routine microscopy most definitely is,” Dr Vimal Baiswar, additional chief medical officer, Lucknow, told IndiaSpend. In Lucknow, for instance, the approximate price of a urine culture is Rs 600-Rs 900, while routine urine microscopy can be done for as low as Rs 50-Rs 100, Dr Sharma said.

Those who suffer from recurrent urinary tract infections, including pregnant women, should be advised a Kidney, Ureter and Bladder test, Dr Sharma said. According to a 2021 study published by the International Journal of Pharmaceutical Sciences and Research, at least 20%-40% of women suffer from recurrent episodes of urinary tract infection.

One 2017 study conducted at a sub-district hospital in Haryana found that 33% of 1,253 pregnant women tested had urinary tract infection. The study recommended public educational programmes and screening of pregnant women for urinary tract infection symptoms to ensure timely diagnosis and treatment.

Post-delivery infection

It is crucial that medical procedures are performed hygienically and with sterilised tools, particularly, when involving pregnant women. Dr Sharma said, “urinary tract infection can occur after delivery as well, as the periurethral area is handled while delivering the baby and at times catheterisation [to drain the bladder of urine] is done, which can lead to infection.”

Bengaluru-based Seema*, 31, got urinary tract infection shortly after the normal delivery of her second child. It began with an itch and sensation in her vagina, and a week later, she was suffering from fever, severe chills and back pain. “I assumed that it was discomfort due to the delivery. But the back pain became so severe that I could not sleep, sit or even feed my son properly. Then the fever began,” she said.

The doctor prescribed her antibiotics, and urinary tests confirmed it was urinary tract infection. She was admitted to the hospital with her new-born and administered antibiotics with saline.

Lack of awareness

Despite having several friends who had gone through urinary tract infection during their pregnancy, Rushda Khan, 22, was caught off-guard as she suffered with the infection twice – in her first and last trimester. At the moment, she is eight-months pregnant.

Khan panicked and contacted her friends as she began feeling discomfort. “My fever was not coming down. It was 106 degrees [fahrenheit] at that point. I had taken Dolo 650 for the temperature and found out only later that pregnant women with urinary tract infection should avoid its dosage.” She took a urine culture test, and doctors eventually confirmed it was urinary tract infection.

“During the first episode, I was vomiting and was then administered antibiotics overnight at a hospital. However, by the second day, I still had a fever,” she recalled.

The urinary tract infection also led to a vaginal yeast infection during her first trimester. Then Khan again got urinary tract infection in December. “During the second time, my symptoms included frequent urination, burning sensation and also pain in the lower abdomen, to the point that I was rushed to a hospital and was given an antibiotic.

However, as her fever did not subside, she consulted the doctor who treated her during her first episode and he prescribed her a different round of antibiotics.

Dr Sharma said that the second and third trimester are a relatively better time to prescribe drugs and antibiotics as compared to the first trimester. “Doctors have to be very selective about the antibiotics we advise during pregnancy. We can’t prescribe all the drugs that combat such infections. There are three grades: A, B and C and we have to see which antibiotic will be safe for the individual,” she told IndiaSpend.

In fact, the treatment for urinary tract infections may not always be antibiotics. “The cause of infection will determine the treatment protocol, unchecked use of antibiotics can cause side-effects and antibiotic resistance, so one should always check in with a doctor,” said Dr Makhwana.

All the four women emphasised that lack of awareness and proper communication aggravates the issue, and the stigma around women’s intimate body parts and sexual health makes a lot of women suffer inadvertently.

“Nobody prepares us for this,” said Khan, adding that “the hospital authorities should tell us what we should do in such situations during pregnancy and about the possible complications, such as vaginal yeast infections and urinary tract infection. I had to look it up online, but we should be getting this information from more reliable sources beforehand.

Fatima agreed. “There is a total lack of awareness. There are some things that are very common in pregnancy, there should be counselling about them for everyone. There are a lot of women who go through it. I am privileged to be able to consult different doctors to get the right diagnosis, not everyone is as privileged.”

The silence is also fostered by families. “Many in your own family are not comfortable talking about it. People talk about weddings, but not marriage and what comes with pregnancy,” said Chaudhary as she shared that her mother-in-law too had had urinary tract infection during pregnancy, but as it was never discussed, she only got to know about it much later.

“Lack of awareness should not be the reason for somebody to suffer so severely during their pregnancy. I wouldn’t wish it on the worst of my enemies.”

Busting myths

The taboo surrounding urinary tract infection and other illnesses related to women’s intimate body parts leads to myths and unverified information.

“A lot of people think that urinary tract infections and sexually transmitted diseases are the same. While some symptoms may overlap, they are different categories of infections and should not be confused with each other,” said Dr Makhwana, who also creates videos on reproductive and sexual health on his Instagram handle to raise awareness.

Another doctor, author and embryologist, who busts health myths on social media, Dr Tanaya Narendra, also known as Dr Cuterus, spoke about the popular assumption that one gets urinary tract infection from sitting on an unhygienic toilet seat. She said, “When you sit on the toilet seat, your pee-hole does not come in contact with it. You can’t get the bacteria directly from it. The one way you can get the infection is if you wipe yourself from back to the front and get the bacteria to the urethra. Always wipe from front to the back.”

Meanwhile, Dr Sharma pointed out that ironically, a lot of women who get frequent urges to urinate and face discomfort while urinating, think that it is because of their medicines or they need to cut down their intake of water. However, keeping oneself hydrated is especially vital during urinary tract infection.

She further said, “In late pregnancies, there might be low immunity. In some cases, pregnant women with big bellies are unable to get their hands down there to clean their intimate parts which could be a big reason for bad hygiene as most houses still do not have facilities such as bidets.”

*name changed on request.

This article first appeared on IndiaSpend, a data-driven and public-interest journalism non-profit.