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Survivorship Guide for Bone Marrow/Stem Cell Transplant
Coping with Late Effects

Sexuality and Intimacy

Much like self-perception, sexuality is complex. Feelings of desire and sexual drive are affected by a host of physical, emotional, and cultural factors. Some people think of sexuality as limited to intimate physical activity with a partner. However, many see sexuality as much broader, linked to our need for caring, intimacy, closeness, and touch. Our feelings around sexuality are influenced by hormones, energy level, the functioning of the sexual organs, feelings of love and closeness, how we were raised, and feelings about ourselves and our partner. Partner conflicts and miscommunication, as well as concerns about body image, can disrupt intimacy and sexual satisfaction. The transplant adds a whole new layer to this already complex picture.

A transplant can affect sexuality in many ways. It can change hormonal levels and sex drive. For men, neurovascular damage caused by chemotherapy or radiation may lead to erectile dysfunction. For women, the transplant may lead to early menopause and can reduce lubrication and elasticity. There can be inflammation of the skin or numbness and lack of sensation. In some cases, there is a narrowing or closing of the vaginal canal, which can make intercourse painful or impossible. Other factors, such as changes in our body image or concern about hygiene post transplant, can also affect desire and sexual activity. Even small changes in energy levels can reduce one’s sexual drive.

Some individuals go through a transplant and experience no change in their sexual activity or sex drive. Others may find that they no longer desire or are able to have sex. And yet others find that once they make modifications and shift their expectations, they can resume an enjoyable and fulfilling sex life. How our sexuality is affected depends on many factors, including whether we are single or in a relationship, the nature of the relationship, and the extent to which our own sexual functioning has changed.

My wife and I are closer than ever, but I can no longer achieve erection since radiation. This has not caused us to be less intimate or feel less close. We just can’t have intercourse anymore.

The instant early menopause at 40 really messed with my physical and emotional balance. I feel my sex life ended at 40.

The biggest challenge post transplant is the day-to-day dealing with the sexual dysfunction, which is difficult on my marriage. While my spouse is extremely supportive, I feel guilty for having this “thing” to deal with every time we want to be intimate. We talk about it, but both of us deal with ongoing frustration over not being able to have the same level of spontaneity as in the past.

My vaginal canal is much narrower, shallower, and very dry, which makes sex more difficult.

I now enjoy sex more than ever!

Studies on sexual dissatisfaction post transplant vary dramatically in their findings, reporting anywhere from 14% to 86% of survivors being dissatisfied after bone marrow transplantation.[13] A recent study of transplant survivors by the Fred Hutchinson Cancer Research Center showed approximately three-quarters of the men and a little over half of the women returned to their previous level of sexual activity pretransplant. However, most women (80%) and nearly half of the men reported some sexual problems.[14] In the comparison group of people who did not undergo a transplant, fewer women and men reported sexual problems.[14]

Coping with Changes in Sexuality

Regardless of whether we are married, in a committed long-term relationship, dating, or single, there are ways to enjoy intimacy in physical and non-physical, non-sexual ways. If sex is no longer pleasurable, you can enjoy warm bubble baths with your partner, soft caressing with massage oils or creams, cuddling, dancing, and talking. Erotic reading, movies, and sexual fantasy can be enjoyed in partnership or alone. If your body has changed, you might need to re-explore your body to discover what feels pleasurable and stimulating.

When I am not really in the mood, I try to get into it by lighting candles, listening to music, and thinking about how I used to feel... I just bought KY Liquibeads and Astroglide upon the recommendation of my ob/gyn.

Vitamin E suppositories which provide moisture and lubrication have made a big difference in my ability to enjoy intercourse again.

In some cases, finding sexual pleasure may mean longer foreplay or shifting the focus away from the genital area to other erogenous zones in the body, such as the neck, ears, inner thighs, feet, and toes. In the past, you may have felt desire spontaneously, but now you may need to plan in advance and initiate foreplay and physical touching in order to be aroused. Candles can help create a romantic atmosphere or can create a soft flattering light if you are uncomfortable with some of the physical changes from the transplant. If intercourse becomes uncomfortable, painful, or difficult, there are several approaches that are helpful. Men may need to take medication for erectile dysfunction before intercourse or use a penile implant. They may also benefit from some hormonal treatment. Women may need to use lubricants or vaginal moisturizers to enjoy sex. Hormone treatment can also improve sex drive and vaginal elasticity. If the vaginal canal has lost flexibility, shrunk, or closed up, vaginal dilators can be helpful. Vaginal dilators can often be obtained from the radiation department in hospitals.

I am trying to let go of what used to be and am trying to figure out new ways to enjoy my partner, to give pleasure and get pleasure. It’s different. It requires a willingness to trust that once we start touching, I will get aroused, rather than the other way around.

Since the hormone therapy, I want to make love more often than my husband does.

Resuming Sexual Activity

Reclaiming your sexuality post transplant can be difficult, particularly if you don’t have a partner, or if you have not been sexually active with your partner for a long time. Sex, just like exercise, is harder to resume if you haven’t been doing it. If you want to resume sexual activity, you may need to start slowly, find ways to initiate contact, and then build upon that.

If you are single and have concerns about dating, keep in mind that dating always involves risks, whether you are healthy or have chronic health conditions. Although it is possible that you will be rejected because of your cancer history or health condition, there are many people with serious health conditions or who have had transplants who find love. Finding partnership and love is about common interests, feelings of connection and trust, enjoyment of each other’s company, as well as sexual attraction. There are dating websites to help you meet others with similar health histories and conditions.

Many people who are dating wonder when they should disclose their cancer history. There is no right or wrong answer, and the right time may vary depending on your level of comfort and trust in the other person, his or her personality, and the context in which you met. Unless the person you are dating already knows about your health history, you might feel more comfortable waiting until you have built a sense of mutual trust and affection before revealing your cancer history and sexual concerns. Once you feel that there is a connection, there are many ways to bring this up. You could broach the topic by mentioning that you had cancer treatment some years ago and ask how this might affect the relationship. Or, if you are concerned about changes in your sexual functioning, you might want to share that it now takes you longer to get aroused. Discussing these topics ahead of time can avoid future misunderstandings or hurt feelings.

If you have taken a long break from sexual activities and are nervous about it, it may be helpful to find non-physical ways to bring romance and intimacy into your life. You might want to embark on an old-fashioned courtship: go on several dates, watch the sun set, go on long walks, or exchange massages. Or, if you are in a longterm relationship, act as if you are courting all over again. Have some fun and enjoy the process, even if it is different from what was familiar and normal in the past.

Communicating Your Feelings and Preferences

It is important to communicate with your partner, particularly if your sexuality has changed or intercourse is no longer as comfortable as in the past. Letting your partner know about these changes may help avoid feelings of rejection that can result from your lack of desire. Talking about your fears and concerns is the first step to finding ways to manage them. Open communication can lead to greater intimacy, regardless of whether sexual intercourse is possible or not.

If intercourse is painful or a certain kind of touching is uncomfortable, let your partner know either by guiding your partner’s touches or discussing ways to create the most pleasure and avoid pain. If discomfort occurs, you may begin to associate physical intimacy with discomfort, which can reinforce your reluctance to have intimate contact. Finding ways to communicate with each other about what is pleasurable and expanding your repertoire of ways to be intimate can strengthen your bond and reinvigorate your sexual life.

Seeking Advice from a Physician, Couple’s Counselor, or Certified Sex Therapist

Speaking to a medical professional about your sexual functioning can often be helpful. Generally, urologists (for men) and gynecologists (for women) can be a useful source of information regarding products to help with a variety of problems, including low sex drive/libido, erectile dysfunction, or vaginal dryness/narrowing. If you are embarrassed to talk about your sexuality, write your questions and concerns in advance and hand them to the doctor.

You may also find it helpful to speak to a couple’s counselor or a certified sex therapist who specializes in helping individuals and couples deal with concerns about arousal, performance, pain or discomfort, or mismatched interest in sexual intimacy. The American Association of Sex Educators, Counselors, and Therapists can provide a listing of certified sex educators and counselors by state.

For the first twelve years post BMT, my sexual desire was only 10% of what it used to be. This was very difficult on my marriage. But after couple’s therapy, we are back.

Sometimes treatments may not work, and your sexual dysfunction may continue to affect your life. This can be very frustrating. However, it is important to remember that intercourse is only one among many ways to express your sexuality, enjoy each other, and be intimate.

ABCs of Love
Always kiss each other upon departing.
Be there for her. Always.
Create an environment of love.
Do it. Now.
Escape from the kids.
Fight fair.
Give of your time.
Handle with care.
Inspire your partner with your love.
Judge not.
Keep your good memories alive.
Listen to her.
Make love with your partner’s needs foremost.
Never go to bed mad.
Offer to handle an unpleasant chore.
Praise him.
Quality time isn’t just for kids.
Respect her feelings.
Say what you feel when you feel it.
Tell her you love her every day. Every day. Every day. Every day.
Understand your differences.
Valentine’s Day is every day.
Walk together. Talk together.
EXcite your partner as only you know how. You can never say “I love you” too often.
Zero-in on his little passions.

Copyright © 1997 by Gregory J.P. Godek. Reprinted from the book Romantic Mischief with permission of its publisher, Sourcebooks.

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