Living with bladder cancer is not only difficult for the patient. It also changes the life of your partner, who often becomes your caregiver. Taking on the role of caregiver can feel like a full-time job, leaving you exhausted and changing the dynamic with your partner, even after recovery. But finding your way 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. The physical and psychological impacts of bladder cancer can disrupt intimacy. For many patients, surgical interventions such as removal of the bladder (called cystectomy) can cause major changes in sexual function and body image. Additionally, radiation and chemotherapy can cause inability to achieve an erection in people with penises, reduced sexual desire, and discomfort during sexual intercourse. A comprehensive review discovered that radiation therapy can cause reduced vaginal lubrication and painful intercourse in people with vaginas.
“Bladder cancer ranges from superficially invasive, non-invasive, 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 side effects) experienced by the person with cancer. Low-risk tumors can sometimes be treated without consequences, but more severe cases may require multiple rounds of chemotherapy or removal of the bladder.
“Chemotherapy or immunotherapy drugs are quite effective, but about 60 to 70 percent of patients develop adverse side effects from these treatments, including urinary urgency, urinary frequency, urine leakage, and pelvic pain when urinating,” Smith said, pointing out that it’s hard to get in the mood for sex when it comes to these issues.
“Altering the anatomy with bladder removal comes with its own set of problems,” he added. If the bladder is removed, patients will be given an ostomy bag, which collects 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 may affect their ability to have an erection. a study found that 8 out of 10 men will experience erectile dysfunction after surgery to remove the bladder. A 2022 survey A study of 1,796 people with bladder cancer, conducted 10 years after diagnosis, confirmed those findings: 80% of men reported erectile dysfunction and 58% reported problems ejaculating.
Experiencing erectile dysfunction can in turn drive to lower self-confidence, feelings of loneliness and greater depression, and is associated with a risk of anxiety disorders. All of this can greatly affect the ability to maintain intimacy.
Read: How to deal with your partner’s sexual dysfunction >>
A change in roles can affect intimacy
For caregivers, the emotional toll and role change from partner to primary caregiver can affect their quality of life and strain the relationship. a studyin which almost 9 in 10 of the caregivers were women, they concluded that the stage of bladder cancer significantly affected the quality of life of the caregivers.
“Once people become caregivers, it takes over their lives and I think it’s very difficult to return to 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 also regaining a sense of intimacy with them. It could simply mean finding a new normal, said Emily Jamea, Ph.D., 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’s going to 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 who they are now after they got sick.”
For your partner, losing parts of your sexual organs or sexual functionality can be a serious blow to your sense of identity. As a caregiver, it is 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 they always have. This is called redefining or expanding our sexual script,” said Jamea, who has counseled couples in similar situations. “Many times people adhere to a very limited sexual script, meaning they do a certain set of activities or behaviors in the same way every time they have sex.”
Think: kissing, foreplay, sexual intercourse. But when sex isn’t an option, couples need to have what Jamea calls a “growth mindset”—that is, being willing to adapt and flip the script.
“We have entire bodies full of erogenous zones, and for people who take this as an opportunity to discover themselves in a new way, they may find that there is still a lot of pleasure to be felt,” she said.
Here, she shares some tips for maintaining and finding new ways to get the spark back with your partner.
- Communicate honestly and openly with your partner. “It’s important to set realistic expectations and have regular conversations with your partner so there isn’t a big elephant in the room,” Jamea advised.
- 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 pathways ready,” Jamea said. “That can be affectionate touching or cuddling, or doing things like showering or bathing together — nothing that puts as much pressure on sex as before.”
- Be open to sex toys. “I have had many patients who have lost the ability to have erections. And one couple in particular comes to mind who had a lot of fun with belts, and they had a belt in every size, shape and color you can imagine,” she recalled. “And the male partner found that wearing them was really pleasurable for him. And the classmate had a lot of fun exploring different types.”
- An ostomy bag can cause a lot of anxiety, but you can ease the discomfort. Recognize that it is a change without your partner feeling that it is a problem. “It’s really going to be about finding positions that are comfortable for you and the ostomy bag, things like side-to-side positions, so the bag is flat,” Jamea suggested.
Ultimately, it’s important to know that your sex life may not go back to what it was before. But that doesn’t mean you can’t have an intimate and satisfying relationship with your partner. Find activities you like to do together and ways to show affection that you both enjoy.
“People make modifications,” Smith said of the patients he has seen over the years. “People try to figure it out and find other pleasures in life, and having a supportive partner is really, really important when it comes to cancer and survivorship.”
This educational resource was created with the support of Merck.
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