Women and bladder cancer
One in four people diagnosed with bladder cancer is a woman; yet bladder cancer is still widely seen as a disease that mainly affects older men. This misperception has real consequences. Women are more likely to have their symptoms dismissed, more likely to be misdiagnosed, and more likely to be diagnosed at a later stage of the disease.
We believe every woman’s health journey deserves to be heard and properly supported. This page brings together what we know about bladder cancer in women, the unique challenges they face, and how the right information can make a real difference.
The scale of the problem
Our Global Bladder Cancer Patient and Carer Survey sheds light on the experiences of women with bladder cancer around the world. The findings are striking:
- 39% of women receive an initial misdiagnosis.
- Women are twice as likely as men to be misdiagnosed with a urinary tract infection (UTI).
- 31% of women said their symptoms were not taken seriously at their first doctor’s visit.
- Women, particularly those under 55, often need multiple appointments before being referred to a urologist.
Why are women’s symptoms so often missed?
Bladder cancer’s main warning sign; blood in the urine, can be overlooked more easily in women. Women may put it down to a period, perimenopause, or a UTI. Doctors, too, may be quicker to investigate a UTI rather than refer a woman to a urologist.
These delays mean that by the time bladder cancer is correctly diagnosed, the disease may have progressed, reducing treatment options and affecting outcomes.
Unique challenges at every stage of the journey
Getting a diagnosis
Women face the greatest barriers at the very first step: getting a diagnosis. They are twice as likely as men to be told they have a UTI when in fact they have bladder cancer, and 39% receive an initial incorrect diagnosis of some kind. In some instances, women may delay seeking help themselves; mistaking blood in the urine for menstruation or the start of menopause.
Fertility
For women of childbearing age, a bladder cancer diagnosis raises urgent questions about fertility. Some treatments; particularly removal of the bladder (radical cystectomy) may involve removing the uterus and ovaries, ending the possibility of natural pregnancy. If fertility matters to you, it is essential to discuss this with your medical team before starting treatment and to ask for a referral to a fertility specialist.
Menopause
Surgical removal of the ovaries causes an immediate menopause, which can bring significant physical and emotional changes. Women who experience this as part of their bladder cancer treatment should receive guidance on managing menopausal symptoms, and on the longer-term effects on bone health, cardiovascular health, and emotional wellbeing.
Body image and sexual health
Changes to the way urine leaves the body: such as a stoma (an opening in the abdomen connected to a pouch) or a neobladder (a new bladder created from part of the bowel), can significantly affect body image and sexual health. These concerns are valid and deserve to be discussed openly with your care team. Ask about access to a clinical nurse specialist or a counsellor experienced in this area.
Continence
Urinary incontinence is a common side effect of bladder cancer treatment and can have a profound impact on quality of life and confidence. Pelvic floor physiotherapy and specialist continence advice are proven to help. If this is affecting you, ask for a referral.
What you can do
- Know the symptoms and take them seriously; blood in your urine, burning on urination, urgency, or going to the toilet much more often than usual.
- See a doctor and specifically ask whether bladder cancer has been considered.
- Request a second opinion if you feel your concerns are not being taken seriously.
- Ask to be referred to a urologist or uro-oncologist.
- Connect with peer support from other women who have been through a similar experience.
5 Women, 5 Experiences
To bring these realities to life, we created the ‘5 Women, 5 Experiences’ project: five personal stories from five different countries, each offering a unique insight into what it means to live with bladder cancer as a woman. These women shared their journeys to build community, raise awareness, and inspire others.
Each story is a reminder that bladder cancer looks different in every life, and that every life matters.
Sharing 5 unique stories of women with bladder cancer
Through these personal stories of lived experiences, we aim to shed light on the unique challenges women affected by bladder cancer face, whose stories often remain unheard. They share their stories to inspire others, create a community, advocate for better healthcare outcomes, and support women with bladder cancer around the world.
Together, we are advocating for increased awareness and action on issues women encounter when faced with a bladder cancer diagnosis and fostering a world where every woman’s health journey is acknowledged and supported.
The first video of the five-part series features Claudia. An inspiring 46-year-old mother from Rome, Italy, first received a diagnosis of upper tract urothelial cancer, which later developed into urothelial carcinoma, or bladder cancer. During the bladder removal surgery, a new bladder, often called a neobladder, was created from the small intestine to collect the urine inside the body and allow it to exit through the urethra.
The second video in our five-part series, “5 Women, 5 Experiences” , introduces the inspiring positivity of Ana María. Aged 79 and living in Buenos Aires, Argentina, Ana María shares her bladder cancer journey. Diagnosed with bladder cancer in 2022, her cancer experience was not her first one, as she overcame breast cancer a few decades before. Ana María is part of a new research study, or clinical trial, investigating new treatment options for muscle-invasive bladder cancer. Her story offers a unique perspective on bladder cancer diagnosis and participation in a clinical trial.
In the third video of the series “5 Women, 5 Experiences,” we meet Angela, a 42-year-old from Niverville, Canada who shares her journey with bladder cancer. Diagnosed in 2020 after her symptoms were initially mistaken for a UTI, Angela’s bladder cancer journey included multiple TURBTs and BCG treatments, progressing to muscle-invasive cancer. Following chemotherapy and a radical cystectomy, Angela now embraces life with her urostomy bag, ‘Peeatrice,’ symbolising her strength and resilience.
In the fourth video of the series “5 Women, 5 Experiences,” we meet Vivian, a 50-year-old from Johannesburg, South Africa who shares her journey with bladder cancer. Vivian’s journey began in 2018 with a cervical cancer diagnosis, leading to surgery and being declared cancer-free. Two years later, following tests for severe abdominal pain, she was diagnosed with bladder cancer. Her doctors recommended a course of chemotherapy, which she bravely began in September 2023, enduring the side effects and emotional toll of battling cancer once again.
In the fifth video of the series “5 Women, 5 Experiences,” we meet Fatima, a 40-year-old from Mumbai, India who shares her journey with bladder cancer. Fatima’s journey began in 2017 when she noticed blood in her urine, leading to a nephrologist referral and initial treatment. Later that year, after missing her periods, an ultrasound revealed both a pregnancy and a mass in her bladder, confirmed to be cancer. She underwent a series of treatments, including TURBT and BCG therapy, enduring severe side effects like UTIs and reactive arthritis, yet she remained determined to fight her diagnosis.
