Women Are Being Told Their Endometriosis Is A UTI – What’s Going Wrong?

“I started getting what I thought was recurrent UTIs (urinary tract infections) and thrush (a common yeast infection in the vagina, penis or skin) and every time I went to the GP, they just said: you’re using fragranced soap; you need to wear cotton underwear; this is just the way your body is; have another course of antibiotics. They never did further investigations.” This is what Kezia Price, 29, says she went through for seven years before being diagnosed with endometriosis. UTIs are caused by bacteria entering the urinary tract, and often lead to pain or a burning sensation when peeing.

“It wasn’t properly assessed,” Price tells Refinery29. “Now, I understand that endometriosis can grow around your bladder, irritating it, making it feel like you have a UTI when you don’t.” She feels let down by the doctors she saw over this period of time. 

Women and people with uteruses have long been underserved when it comes to endometriosis diagnosis, support and care. Some will be familiar with the statistic that the average length of time it takes to get diagnosed is eight years. The situation is even bleaker for Black women, as research from Nuffield Health found they are 50% less likely to be diagnosed than white women. The symptoms most people associate with the disease include heavy, painful periods, but can you name many others? Endometriosis is where tissue similar to the lining of the womb grows in other places, such as the ovaries. Symptoms include pelvic pain, pain during or after sex, diarrhoea, difficulty getting pregnant, and nausea, according to the NHS. Of course, it isn’t on patients to know these details, rather their medical professionals. However, anecdotally we hear of young women doing their own research and then pushing back against time-poor GPs who’ve issued incorrect diagnoses.

Consultant gynaecologist at London Gynaecology, Dr Hemant Vakharia, commonly sees patients who’ve been misdiagnosed with UTIs and IBS when the culprit of their pain is actually endometriosis. “The bladder, uterus, ovaries and bowel are situated very close together in the pelvis, and endometriosis symptoms can often be incorrectly attributed to these other structures,” he says. “Endometriotic deposits can, in some cases, go all the way through the wall of the bladder, which can result in pain when passing urine or when the bladder is full — these can also be symptoms of a UTI. Some patients can also experience blood in their urine which can both be a sign of endometriosis or a UTI.”

Price, from London, first began routinely feeling pain when passing urine in 2016 and initially trusted her GP’s diagnosis of recurrent UTIs. “I would go to the doctors saying I had one again, but then a test would show I didn’t. I’d still get prescribed antibiotics because I was in so much pain, but I’d feel no better after the course and get given another few days’ prescription. I had a pee bottle at all times, ready to fill and take to the GP — I was constantly going back and forth,” she says. Price says one doctor told her the pain was “in her head”, and she thinks others believed she was “mad and making it up”. Endometriosis didn’t cross her mind as a possibility and doctors didn’t use the word. “All I knew was something was wrong because of the pain I was in. I was regularly doubled over with a radiating stabbing pain, having to take time off work, and my day-to-day life was affected,” she adds. Her periods were also excruciatingly painful.

In 2020, an All-Party Parliamentary Group report concluded that the diagnosis time for endometriosis hadn’t improved at all since 2010. Their survey of over 10,000 people with the condition found that in search of a diagnosis for their pain, 58% had visited the GP over 10 times, 21% had visited a hospital 10 times or more, and 53% went to A&E at least once. These bleak statistics show that despite press coverage of the disease in recent years, the lived experience of those suffering with it is still riddled with the same old problems around diagnosis and care.

Price eventually turned to private healthcare in 2023. When an ultrasound located a cyst in her left ovary, she was fitted with a Mirena coil (hormonal IUDs are sometimes used in for treatment, as progesterones in the coil can prevent the symptoms of endometriosis from worsening). The coil can’t undo the tissues that have already grown though, so a few months later, Price had ureterolysis, a surgical procedure in which the tubes that carry urine are freed from endometrial tissues. It was at this point that she learned that both her ovaries had adhered to her pelvic wall, and there was tissue around her bowels. Price was diagnosed with a type of endometriosis called peritoneal, at stage 3 (stage 4 being the most severe); it seldom shows up on a scan and could only be properly diagnosed after surgery. Finally, she had answers. It was never a case of recurrent UTIs — rather, the pain when urinating and during sex, as well as the struggle to empty her bowels, was because the growths were focused around her pelvis.

Dr Jan Toledano, a women’s hormone specialist and the founder of London Hormone Clinic, says this is “incredibly common”. “It’s typical for endometrial tissues to grow in the pelvis, around the urethra, the bladder, and the bowel,” she explains. “If the growths are around the bladder neck, you’re going to have symptoms of pain when you urinate. The same can happen when experiencing bowel movement if the growths are there. When women say they’re in agony with their periods, in my opinion, endometriosis is the diagnosis — it isn’t going to be anything else. They should be treated there [and then], instead of going through years of pain until the point of surgery. It comes back to extreme misogyny — if men had it, it would be diagnosed straight away and it would just be done.”

Women’s health issues are massively under-researched in comparison to men’s. According to Imperial College, just 2% of medical research funding goes towards pregnancy, childbirth and female reproductive health. Meanwhile, one in three women have a reproductive or gynaecological health problem, as the report notes. An exclusive report shared with The Independent confirms the impact of this: A third of women with a female health condition have waited three years or longer for a diagnosis.

Sarah Cwierz, 29, from London, was also wrongly diagnosed with recurring UTIs. “I got diagnosed with UTIs on dozens of occasions, and was prescribed antibiotics which I religiously took. The pain was like a searing pain, like I had a hot poker inside me, and it was cyclical in line with my periods, which I guess is why they thought it was UTIs which then ‘resolved’ themselves,” she tells Refinery29. In total, she estimates she’s taken antibiotics wrongly up to 20 times. Vakharia says that “taking antibiotics in the absence of an infection can lead to antibiotic resistance, making it harder to fight off infections in the future. Additionally antibiotics can affect the good bacteria in your body leading to patients developing other problems like thrush or bowel symptoms.”

Beyond this, the fact remains that her endometriosis wasn’t being treated. Sometimes doctors would test to check for a UTI, but even when it was negative, Cwierz was told “sometimes it doesn’t pick up on the test, and a UTI is the most likely issue.”

“I was completely frustrated that I wasn’t listened to. I knew it wasn’t UTIs — the pain was too intense. I think the GPs put me down as a ‘moaning Minnie’,” she adds. After a few years of struggling with the symptoms and feeling like she wasn’t getting anywhere on the NHS, she also went private. After a few months of investigation, she was finally diagnosed with endometriosis — and that she had not been suffering with UTIs.

Cwierz describes the pain she endured as “debilitating” and has since undergone surgery to remove the excess tissue that had grown around her bladder. “I get it’s perhaps a difficult diagnosis, but I feel like there should have been a greater degree of suspicion when I kept going back repeatedly in so much pain, and there obviously wasn’t.”

Vakharia stresses that patients who feel that something is wrong or unanswered should push to be referred to an endometriosis expert, given how “difficult” it is to identify the disease on a scan. “Assessment by an endometriosis specialist is really important to get a diagnosis,” he says. He recommends that patients communicate how severe and persistent pains are so that they’re “taken seriously”, and the diagnosis process can be sped up. “I think there needs to be more education on the subject and there’s the need to take patients seriously. Increased awareness of endometriosis in primary care physicians through education would lead to prompt specialist referral,” he says.

“The overall message should be that periods which are very painful, that limit your quality of life, should not be regarded as ‘normal’,” says Vakharia. “Dismissing severe period pain as ‘normal’ should be consigned to the history books.” Women and people with uteruses are waiting for the day.