Reclaiming sexuality after gynecologic cancer

by Julie Smith Riley

Women who are treated for gynecologic cancers - cervical, uterine, ovarian, endometrial, or vulvar- are often caught off-guard by the impact that surgery, pelvic radiation, and chemotherapy can have on their sex lives.

"Neither my gynecologic oncologist nor my radiation oncologist discussed any sexual side effects prior to treatment," says Katie, 31, who had a hysterectomy and radiation treatments for cervical cancer. "My libido fell off the radar screen almost immediately, and even after five years, it is becoming increasingly hard to find."

While not all women experience dramatic shifts in sexual functioning and desire after being treated for gynecologic cancer, almost all will notice changes that affect their sexuality. But discussions of sexual issues often slide to the bottom of the priority list during cancer treatment. Knowing what to expect up front, however, can help women hold on to the pleasure and comfort that sexual activity can provide.

Pelvic radiation, chemotherapy, and surgeries that involve removal of the ovaries can plunge women into early menopause. The symptoms of this condition can be "very dramatic and very sudden," according to Judy Knapp, PhD, MSW, an oncology social worker at Magee-Womens Hospital in Pittsburgh.

While hormone replacement therapy (HRT) can help, its use in women with endometrial and ovarian cancers is controversial, leaving many women to cope with menopausal symptoms of hot flashes, night sweats, and mood swings, in addition to the side effects of their cancer treatments.

The lack of estrogen caused by early menopause can also leave vaginal tissues dry, making sexual intercourse uncomfortable or painful. But many women find that using a water-based lubricant, such as AstroGlide, makes intercourse much more comfortable.

Surgery for cervical cancer can shorten the vagina and change sexual sensation. Treatment for vulvar cancer usually involves removing at least some of the external genitalia, dramatically changing a woman's appearance. Radiation can also cause vaginal burns (which will heal), or scarring or narrowing of the vagina (which are permanent).

"Sensation is different and vaginal intercourse can become painful. And actually it's standard treatment to give women dilators when they're going through radiation therapy and to tell them to use those vaginal dilators three times a week or to have sex fairly frequently," says Knapp. The dilators are torpedo-shaped objects used with lubricant in the vagina to help keep scarring and narrowing to a minimum. This is a lifelong regimen; women who neglect it can develop adhesions in the vagina, making future intercourse and pelvic examinations more painful.

Libido can be sapped by fatigue, nausea, and diarrhea caused by chemotherapy and radiation. Body image issues often arise as women are faced with surgical scars, loss of head and pubic hair from chemotherapy, loss of fertility, and removal of their reproductive organs or genitalia.

Often the vaginal area, once associated with sexual pleasure, becomes an unpleasant reminder of the cancer.

"I think when you've had so much attention directed toward that portion of your body, it's hard not to think of the disease when you're making love," explains Katie.

While some physical side effects are unavoidable, there is plenty that women undergoing treatment for gynecologic cancer can do to ensure a satisfying and pleasurable sex life:

Ask about sex

If sex is a priority for you, you'll probably have to be the one to raise the issue with your health care team. Many women assume they need to abstain from intercourse or any sexual activity during treatment, and sometimes they do. But in many cases, maintaining sexual relations during treatment can not only provide emotional support and intimacy, but may also help keep sexual functioning intact.

Ease back into sex

If you've taken a break from sexual activity during treatment, it's normal to feel anxious. So ease back into sex gently. Set aside a block of time for you and your partner to relax and explore one another.

"Proceed as far as you feel comfortable proceeding. And that may be just doing some vaginal exploration with your partner's fingers at first to see what that feels like," recommends Knapp. "Most of the women I talk to say that they were pleasantly surprised and it wasn't as uncomfortable as they'd anticipated."

Try something new

Realize that you and your partner will probably have to make some permanent adjustments in your sex routine. Be adventurous in trying new positions that may be more comfortable. And expand your repertoire beyond intercourse to include more touching, cuddling, and other forms of sexual intimacy. Women who have pain or diminished sensation with vaginal intercourse can experience pleasure and orgasm through other types of sexual touching.

Speak up

Communicate with both your doctor and your partner about any pain or discomfort you're having during sexual activity.

Seek help

Ask your physcian, a psychologist, or a social worker for a referral to a support group for women who have been treated for gynecologic cancers. They can be a great source of practical information and a place to feel connected to people who understand what you're going through.