Sex After Transplants

By Sally James, cancerpage.com
Seattle

Just because a patient survives a brush with death, it doesn’t mean that he or she has to accept a lower quality of life for years afterward.

At a reunion of bone-marrow transplant survivors, patients told doctors at the Fred Hutchinson Cancer Research Center that they had suffered fatigue or sexual dysfunction for many years and were reluctant to tell their family doctors.

"Your life was saved, how can you complain about anything?" was the message they asked themselves.

This attitude handicaps doctors who truly want to help, according to Karen Syrjala, a behavioral psychologist, whose special area of research is long-term psychological follow up of transplant patients.

In her studies of patients, Syrjala has found that the physical recovery of patients is faster than their psychological recovery. By one year, most patients are physically back to where they were before their transplant, she reported. But, emotionally, she found they weren’t back until two or three years later.

"The process of emotional recovery is slow and on a different path than the physical," Dr. Syrjala told an audience of survivors.

The good news is that after five years, about 85 percent report they are working full-time and have minimal physical symptoms and are in good psychological health, she said.

The biggest three problems listed by survivors are financial problems from medical costs, irritability and mood swings, her study showed.

"It’s not over when you go home," from a transplant, Syrjala told the audience.

She recommends early screening of patients for depression, as well as counseling for patients about sexuality. Both women and men experience a change in hormone levels during transplant therapy. For most men, the hormone levels return by one year later. Women often undergo menopause during therapy and so they are dealing with a permanent change in their hormone status.

Syrjala believes that immediate hormone replacement therapy can be helpful to many women in preventing a loss of sexual function post-transplant.

"What we know for sure is that transplant affects emotions, sexuality and relationships," Syrjala said. "Our data suggests that it doesn’t get better on its own." She encourages patients to talk to their doctors, even if the discussion begins as uncomfortable.

A woman in the audience told Syrjala that she had felt pain during sex for many years and suffered emotionally. "My husband thought I didn’t love him," she said.

After many years, she did receive hormone therapy, which made a big difference. Why didn’t her doctors ask her sooner about sexuality, she wondered.

"You may know more about this than your gynecologist does," Syrjala answered. She told patients to be persistent in asking for specific information on new treatments from their doctors.

Here are a few tips offered at the reunion:

Family physicians are not always well informed about the side effects of chemotherapy, immunosuppression and the psychological after-effects of cancer treatment. Many patients report being misdiagnosed for graft vs. host disease symptoms, for example. These symptoms would have been obvious to a transplant specialist, but mimic other common disorders for those who are not experts.

Be assertive about asking for different strategies if your treatment is not working. There are new discoveries being made about transplant-related issues and they may apply to your situation. You cannot rely on your family doctor to know about the newest therapies.

Mental and sexual health is important and deserves discussion with your doctor. If he or she is uncomfortable and not helpful in dealing with symptoms, seek expert help from someone else. Research has been done on sexual function after transplant and there are hormone treatments for women, especially, that seem effective in many cases. Silence will not help.

SOURCE:

• cancerpage.com coverage of the reunion of transplant patients at the Fred Hutchinson Cancer Research Center. August 3-5, 2000.
• Additional information about Syrjala"s research.