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Community Views: The Female Bladder Cancer Experience

Last updated: April 2022

Learning you have bladder cancer can change your life in profound ways. You not only have to deal with the unique physical aspects of having bladder cancer but the social and emotional impacts, too.

To learn more about women's bladder cancer experience, we recently posed a question on the BladderCancer.net Facebook page. There, we asked community members to tell us: "How has bladder cancer impacted your identity?"

Here is a look at some of the many insightful responses we received.

Physical symptoms of bladder cancer

Urinary problems usually accompany a bladder cancer diagnosis. You may experience burning, incontinence, a constant urge to go to the bathroom, and other uncomfortable symptoms. It can affect your daily activities, including work, hobbies, and your social life.1 Women told us:

"I'm very anxious to go out anywhere. I'm afraid I will leak, and it is really depressing. I'm having so much trouble adjusting, and I hate it."

"I have problems going anywhere where there is no bathroom at hand. The need can happen at a moment's notice."

If you have your bladder removed, you may lose your uterus and ovaries, too. This procedure can cause women to lose interest in sex and experience vaginal dryness.1

One community member had her bladder and pelvic organs removed, and that was a big change. However, she said, "Humans are resilient, and indeed we do learn how to cope."

The emotional toll of bladder cancer

Bladder cancer, like any cancer, often comes with an emotional toll that can be overwhelming at times. But, our community members say they find ways to cope.

"I had surgery twice, 30 rounds of radiation and chemotherapy. That was 2019, and so far, check-ups every 3 months and now every 6 months, and no recurrence. I feel truly blessed and enjoy my daily life. Don't get me wrong. When the time is coming for the next cystoscopy, my mind goes a little off-kilter."

"I have a urostomy, which is a part of me but doesn't define me. I don't like going to the urologist because I am surrounded by men. It can feel lonely."

"I would like to think that any changes have been positive. I am the same person but hopefully at least a bit more compassionate and caring of others and the situations they deal with."

"When first diagnosed it was like someone kicked me in the stomach, but I'm a determined person so I did what I have to and now I'm a cancer survivor."

If you are going through bladder cancer, you may want to find a network for support and ideas for ways to cope.

Emerging stronger and ready to advocate for others

Some of the women said they have become more grateful due to their diagnosis. Others said their experience has helped them advocate for others going through similar journeys.

"I would like to think that I am a much more thankful, caring person. I appreciate my life and being cancer-free."

"I feel stronger because I have been helping others through patient advocacy. I knew nothing when I was diagnosed, and I like being able to empower others through knowledge."

"It definitely got my attention, and that is why I spend each week helping others deal with this disease."

"I feel robbed having gone through all this at 40 but ever grateful that the medical advances allow me still to be here."

The female bladder cancer experience

"In many ways, I don't think it has [changed my identity] and certainly not negatively. As well as being a wife, a daughter, a sister, an aunt and a friend, I now also identify as a bladder cancer advocate through my work here at BladderCancer.net, with a UK bladder cancer charity, a UK ostomy supplier, and my own social media presence to raise awareness of bladder cancer."

Thank you to everyone who shared their experiences with this story. We appreciate your contributions, all of which help women who are new to the community learn more about the female bladder cancer experience.

Connect with other bladder cancer members!

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Share your unique bladder cancer experience! It could help someone else feel less afraid.

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