“I’m not emotionally comfortable being naked with a stoma and an incision that runs the length of my torso and down to my pubic area,” she said. “Plus, intercourse is no longer physically comfortable.” Marie is not alone in experiencing these effects and has had difficulty with talking to her doctor about them. “My doctor was embarrassed to talk with me about sex during my cancer treatment,” she said.

Although he is not Marie’s doctor, Timothy McGuinness, D.O., of York Gynecologic Oncology, said he empathizes with patients such as her. Many physicians are uncomfortable talking about intimacy and shouldn’t be, he said.  Both anxiety about having cancer and a changing body image can take their toll on a patient’s libido.

“The largest sexual organ in our body is between our ears,” McGuinness said. Hair loss, nausea and weight change can make a woman feel unattractive. Surgery scars or a mastectomy also can devastate her image of femininity.  And finally, she may worry that her partner feels differently, too. 

Beyond these emotional obstacles, however, are the possible physical changes which can result from almost any cancer treatment.  Not every woman will experience sexual side effects following treatment, but the most common are:

• Less energy or less desire for sexual activity.
• Vaginal dryness.
• Pain during intercourse.
•  Difficulty reaching climax.
• Reduced size of the vagina.

What’s causing all these problems? Hormonal changes are one culprit — a sudden drop in estrogen levels when the ovaries are affected by chemotherapy, hormone therapy, radiation or surgery. Radiation and surgery for cancers in the pelvic area can cause difficulties. Marie lost part of her vagina, and the surgeon used a mesh to reconstruct it. She said the result makes intercourse painful.  Also, patients may feel discomfort after a radical hysterectomy or treatment for rectal cancer or vulvar cancer.

FINDING ANSWERS

Do women hear about all this before treatments begin — or even afterward?  McGuinness said he expects they do not. Patients should ask about possible side effects and what can be done to ease them. Even write the questions down and hand them to a doctor if it is more comfortable. If the doctor’s answers are inadequate, a patient should ask to speak with a nurse, counselor or sex therapist.

And a partner can be uncomfortable, too. Talk it over together. Start slowly with other kinds of intimacy that make you both feel less self-conscious. An intimate partnership can provide the emotional sustenance to ease your recovery and, as Marie said, “make your life feel normal again.”Many hospitals in central Pennsylvania offer support groups for cancer survivors. “Patient to patient, woman to woman is the best antidote there is to sexual side effects,” McGuinness said.

Marie found what she needed on the Web: a support group through the Bladder Cancer Advocacy Network. There, she could chat online with women of her own age who had experienced similar difficulties.

For online support, the American Cancer Society’s Cancer Survivors Network at csn.cancer.org is another place to start.