Living with bladder cancer isn’t just difficult for the patient. It’s also life-changing for their partner, who often becomes their caregiver. Taking on the role of caregiver can feel like a full-time job, leaving you drained and changing the dynamic with your partner, even after recovery. But finding the road back to intimacy is important for the health of your relationship, and your own happiness.
Bladder cancer and its treatments can profoundly affect sexual health. Both the physical and psychological impacts of bladder cancer can alter intimacy. For many patients, surgical interventions such as removing the bladder (called a cystectomy) can lead to big changes in sexual function and body image. Additionally, radiation and chemotherapy may result in an inability to get an erection for people with a penis, reduced sex drive and discomfort during sex. A comprehensive review found that radiation therapy can cause reduced vaginal lubrication and painful sex for people with a vagina.
“Bladder cancer ranges from superficially invasive, noninvasive, deeply invasive to metastatic,” explained Armine Smith, M.D., director of Johns Hopkins Urologic Oncology at Sibley Memorial Hospital. The type of cancer determines the treatment — and side effects — that the person with cancer experiences. Low-risk tumors may sometimes be treated without consequences, but more serious cases may need multiple rounds of chemotherapy or removal of the bladder.
“Chemotherapy or immunotherapy drugs are quite effective, but about 60 to 70% of patients develop adverse side effects from these treatments, including urinary urgency, urinary frequency, urinary leakage and pelvic pain when urinating,” Smith said, pointing out that it’s tough to get in the mood for sex when dealing with these issues.
“Altering the anatomy with the bladder removal carries its own set of problems,” she added. If the bladder is removed, patients will be given an ostomy bag, which collects the urine externally. Women in advanced stages may also have part of their vagina removed. Men may also have their prostate removed along with their bladder, which can affect their ability to have an erection. One study found that 8 out of 10 men will experience erectile dysfunction after surgery to remove their bladder. A 2022 survey of 1,796 people with bladder cancer, conducted 10 years after diagnosis, confirmed those findings, with 80% of men reporting erectile dysfunction and 58% reporting trouble ejaculating.
Experiencing erectile dysfunction can in turn lead to lower self-confidence, a sense of loneliness and increased depression and is associated with a risk of anxiety disorders. That can all heavily impact the ability to maintain intimacy.
Read: How to Cope with Your Partner’s Sexual Dysfunction >>
A shift in roles can affect intimacy
For caregivers, the emotional toll and the change in role from partner to primary caregiver can affect their quality of life and strain the relationship. One study, in which almost 9 out of 10 of the caregivers were women, concluded that the stage of bladder cancer significantly affected the quality of life for caregivers.
“Once people become caregivers, it kind of takes over their life, and I think it's very hard to shift back into a normal dynamic. It just takes time,” Smith said.
If you’re a caregiver, there are steps that you can take to support your partner while also regaining a sense of intimacy with them. It just might mean finding a new normal, said Emily Jamea, Ph.D., certified sex therapist, author of “Anatomy of Desire: Five Secrets to Create Connection and Cultivate Passion” and member of the HealthyWomen Women’s Health Advisory Council.
“It is going to be a rediscovery process … getting to know and understand your partner in a new way,” Jamea explained. “This is going to be different from how you knew and understood them prior to them being sick, when they were sick and now who they are after they're sick.”
For your partner, losing parts of their sexual organs or sexual functionality can be a huge blow to their sense of self. As a caregiver, it’s important to recognize how this affects your partner’s emotional well-being and how it changes your sex life.
“This is when I instruct people to think about sex more broadly than the way that they always have. This is called redefining or broadening our sexual script,” said Jamea, who has counseled couples in similar situations. “A lot of times people adhere to a very narrow sexual script, meaning they do a certain set of activities or behaviors the same way every time they have sex.”
Think: kissing, foreplay, intercourse. But when intercourse isn’t an option, couples need to have what Jamea calls a “growth mindset,” having a willingness to adapt and flip the script.
“We have these entire bodies full of erogenous zones, and for people who use this as an opportunity to discover themselves in a new way, you can find that there's a lot of pleasure to still be had,” she said.
Here, she shares a few tips for maintaining and finding new ways to regain the spark with your partner.
- Communicate honestly and openly with your partner. “It's important to set realistic expectations and periodically have a conversation with your partner so it's not this big elephant in the room,” Jamea advised.
- Find ways to maintain physical touch and affection, even if you or your partner are not in the mood for sex. “Keep some of those pleasure pathways primed,” Jamea said. “That can be affectionate touch or cuddling, or doing things like taking showers together, bathing together — nothing that puts too much pressure on sex as you once had it.”
- Be open to sex toys. “I've had a lot of patients who have lost their ability to have erections. And one couple in particular comes to mind where they had a lot of fun with strap-ons, and they had a strap-on in every size, shape and color you can imagine,” she recalled. “And the male partner found that wearing them was actually really pleasurable to him. And the female partner had a lot of fun exploring different types.”
- An ostomy bag can lead to a lot of anxiety, but you can ease the awkwardness. Acknowledge that it’s a change without making your partner feel like it’s a problem. “This is going to be really about finding positions that are comfortable with you and with the ostomy bag, things like side-by-side positions, so the bag is laying flat,” Jamea suggested.
Ultimately, it’s important to know your sex life may not go back to what it once was. But that doesn’t mean you can’t have a satisfying and intimate relationship with your partner. Find activities you love doing together and ways to show affection that you both enjoy.
“People make modifications,” Smith said about patients she’s seen over the years. “People try to figure it out and find other pleasures in life, and having a supportive partner is just really, really super important when dealing with cancer and survivorship.”
This educational resource was created with support from Merck.
