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Living with bladder cancer is not only 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 you’ve recovered. But finding your way back to intimacy is important to the health of your relationship and your own happiness.
Bladder cancer and its treatments can profoundly affect sexual health. Both the physical and psychological effects of bladder cancer it can change intimacy. For many patients, surgical procedures such as removing the bladder (a cystectomy) can lead to major changes in sexual function and body image. In addition, radiation and chemotherapy can lead to erectile dysfunction for men with a penis, decreased sex drive, and discomfort during sex. A comprehensive review found that radiation therapy can cause decreased vaginal lubrication and painful sex in people with a vagina.
“Bladder cancer ranges from superficially invasive, noninvasive, deeply invasive to metastatic,” he explained. Armine Smith, MDdirector of Johns Hopkins Urologic Oncology at Sibley Memorial Hospital. The type of cancer determines the treatment—and the side effects—that the person with cancer experiences. Low-risk tumors can sometimes be treated without sequelae, 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 percent of patients experience side effects from these treatments, including urinary urgency, frequency, urinary leakage, and pelvic pain when urinating,” Smith said. , pointing out that it’s hard to be in the mood for sex when you’re dealing with these issues.
“Changing the anatomy by removing the cyst has its own problems,” he 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. A study found that 8 out of 10 men will experience erectile dysfunction after surgery to remove their bladder. 2022 survey of 1,796 men with bladder cancer, conducted 10 years after diagnosis, confirmed these findings, with 80% of men reporting erectile dysfunction and 58% reporting ejaculation problems.
The experience of erectile dysfunction can in turn lead to lower self-confidence, feelings of loneliness and increased depression and is associated with risk anxiety disorders. All of these can greatly affect the ability to maintain intimacy.
Read: How to deal with your partner’s sexual dysfunction >>
A role reversal can affect intimacy
For caregivers, the emotional toll and changing role from partner to primary caregiver can affect their quality of life and strain the relationship. A studyin which nearly 9 out of 10 caregivers were women, concluded that the stage of bladder cancer significantly affected caregivers’ quality of life.
“Once people become carers it takes over their lives and I think it’s very difficult to get back into a normal dynamic. It just takes time,” Smith said.
If you are a caregiver, there are steps you can take to support your partner while regaining a sense of intimacy with them. It might just mean finding a new normal, said Emily Jamea, Ph.D., a certified sex therapist, author of “Anatomy of Desire: Five Secrets to Creating Connection and Cultivating Passion» and member of the HealthyWomen Women’s Health Advisory Council.
“It will be a process of rediscovery… getting to know and understand your partner in a new way,” Jamea explained. “This will be different from how you knew and understood them before they got sick, when they were sick, and now who they are after they get 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 the time when I instruct people to think about sex more broadly than the way they always have. This is called redefining or expanding our sexual script,” said Jamea, who has counseled couples in similar situations. “Many times people follow a very narrow sexual script, meaning they do a certain set of activities or behaviors in 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,” being willing to adapt and flip the script.
“We have these whole bodies full of erogenous zones, and for people who use that as an opportunity to discover themselves in a new way, you can find that there’s still a lot of pleasure to be had,” she said.
Here, he shares some tips for maintaining and finding new ways to rekindle the spark with your partner.
- Communicate honestly and openly with your partner. “It’s important to set realistic expectations and talk to your partner periodically so it’s not such a big elephant in the room,” advises Jamea.
- Find ways to maintain physical contact and affection, even if you or your partner are not in the mood for sex. “Keep some of those pleasure rides ready,” Jamea said. “This can be affectionate touching or cuddling, or doing things like showering together, bathing together – nothing that puts too much pressure on sex like you once did.”
- Be open to sex toys. “I had many patients who lost their ability to have an erection. And one couple in particular comes to mind where they had a lot of fun with straps, and they had a strap in every size, shape and color you can imagine,” she recalls. “And the male partner found that wearing them was actually very pleasurable for him. And the female partner had a lot of fun exploring different guys.”
- An ostomy bag can lead to a lot of stress, but you can ease the awkwardness. Acknowledge that it’s a change without making your partner feel like it’s a problem. “That’s really going to be about finding positions that are comfortable with you and the ostomy bag, things like side-by-side positions so the bag is flat,” suggested Jamea.
Ultimately, it’s important to know that your sex life may not return to what it once was. But that doesn’t mean you can’t have a fulfilling and intimate relationship with your partner. Find activities you love to do together and ways to show affection that you both enjoy.
“People make modifications,” Smith said of patients she’s seen over the years. “People are trying to figure it out and find other pleasures in life and having a supportive partner is very, very important when dealing with cancer and surviving.”
This educational resource was created with support from Merck.
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