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Maintaining Intimacy With Leukemia

Medically reviewed by Mark Levin, M.D.
Posted on June 8, 2021

Leukemia, like any serious illness, can impact a person’s sexuality — regardless of age, culture, gender, partnership status, or type of cancer. The emotional stress, the physical effects of treatment, and the physical changes can all impact intimate relationships. So, too, can the stress a partner may experience from caregiving. Fortunately, there are ways for people living with leukemia to manage these impacts and maintain sexual relationships.

Physical Impacts of Leukemia

Leukemia and treatments can have physical consequences that affect intimacy. Some physical impacts are directly related to sexuality, whereas others have more general effects on quality of life.

Treatment side effects like fatigue, nausea, gastrointestinal problems, and pain can diminish your quality of life, limit your daily activities, and make it hard to even consider sexual desire. One MyLeukemiaTeam member wrote, “I have uncontrollable nausea and body aches. I am not functioning at all.”

Chemotherapy can cause physical changes that directly affect libido, hormone levels, and sexual function. It can lower testosterone levels, which can decrease libido. It also can lower estrogen levels, causing premature ovarian failure (early menopause). This hormonal change can lead to symptoms like hot flashes and vaginal dryness, which can make sex uncomfortable.

Emotional Health and Intimacy

Depression and other mental health issues — such as anxiety or stress — are common among people with cancer. An estimated 1 in every 4 people with cancer has clinical depression. No matter the cause, depression can negatively impact sexual desire and function. Depression can lead to a lack of interest in sex, inability to experience pleasure, inability to orgasm, and erectile dysfunction.

Body Image

Leukemia and treatments can result in changes in your appearance, such as hair loss, weight loss or gain, or scarring. These, in turn, may lead to feelings of being unattractive, decreased sexual desire, and avoidance of intimacy.

“Hi, girls! Thanks for letting me know I am not alone about my lack of hair,” a MyLeukemiaTeam member wrote. “It is thin and light, and I feel so unattractive. My husband thinks it is fine, but I am so self-conscious of how it looks.”

Childhood Leukemia

Childhood leukemia can have lasting physical and psychological impacts on a person’s sexuality and future intimacy. There is evidence that childhood cancer survivors diagnosed between the ages of 11 and 20 have impaired sexual function and reduced libido compared to those diagnosed earlier in childhood.

A small study of young women who had survived cancer found they lacked interest in their own sexual body — possibly because they felt their bodies were somehow defective due to the life-threatening illness they’d experienced.

In people undergoing treatment, leukemia also dampens sexual desire. Leukemia may disrupt the development of the identities of adolescents and early young adults between the ages of 14 and 25. This, in turn, may lead to social isolation. A study involving 42 people between the ages of 12 and 19 who were receiving chemotherapy revealed that the participants had less sexual intercourse than their peers.

Parents of Children With Leukemia

Childhood leukemia can put stress on a family, potentially affecting intimacy between parents. Although a child's illness can sometimes strengthen parents’ bonds and promote emotional closeness, it can also produce marital conflicts. The same set of parents may experience greater closeness or greater conflict at different points on their child’s cancer journey.

Partners of People With Leukemia

A person’s leukemia diagnosis can impact their partner’s sexuality. Partners often report lower sex drive, fear of initiating sex — sometimes for fear of hurting their partner — and feeling unwanted, due to the drop in sexual intimacy. Even nonsexual forms of physical affection, such as touching, may diminish in a relationship when one partner is living with leukemia. Couples may avoid even simple forms of affection, perceiving such actions will necessarily lead to sexual intercourse — which may not be possible or may feel inappropriate because of the cancer diagnosis. Partners may also feel exhausted due to their cancer care role. Often, sexual desire is inhibited because there are simply other priorities. One spouse on MyLeukemiaTeam wrote, “It is hard on a marriage. Goals change and being really patient is important.”

Ways of Coping

There are several ways for individuals with leukemia to manage their condition’s effect on their sex life. Here are some suggestions that may help.

Talk To Your Doctor

Talk with your oncology or health care team about any intimacy issues you and your partner may be experiencing. You could also ask about potential medications, such as Viagra (sildenafil) for erectile dysfunction or lubricants for vaginal dryness. Your health care provider may provide a referral to a sex therapist.

Seek Mental Health Counseling

Ask your health care professional about psychotherapy, especially if you are experiencing symptoms of depression or anxiety. Psychological interventions that may be useful include:

  • Cognitive behavioral therapy
  • Clinical hypnosis
  • Mindfulness-based therapies
  • Acceptance and commitment therapy

Speak Openly With Partners

Open conversations about sex are important for every relationship, whether or not you have cancer. Talk with your partner about your feelings to help you both understand one another. It’s also important to talk to your partner about your sexual desires and what can help you feel more interested in sexual intimacy.

You may also wish to speak with a sex therapist who has experience helping people with illnesses that impact their intimate relationships. A sex therapist can help you individually or work with couples.

Find Support

Finding support outside of your romantic relationships can also be beneficial. Joining support groups for people with leukemia, whether in person or online, can help you connect with others who relate to your experiences.

Being open with your close and trusted network of friends and family members can also help you feel supported.

Practice Self-Compassion

Living with leukemia can be challenging. Cutting yourself some slack, or practicing self-compassion, can help you better manage stresses related to chronic illness, which in turn can improve your intimate life. Remind yourself to treat yourself with kindness and to minimize harsh self-judgment. It can be helpful to think about how you would respond to a friend in your shoes.

Improve Sleeping Habits

Improving your sleeping habits can help you better manage the fatigue that can come with leukemia. Fatigue can impact a person’s libido or desire for intimacy. Below are some steps you can take to get more rest at night.

  • Go to bed at the same time each night and get up at the same time each morning.
  • Make sure your bedroom is dark, quiet, and at a comfortable temperature.
  • Remove electronic devices — laptops, smartphones, tablets, and TVs — from the bedroom.
  • Avoid alcohol, caffeine, and large meals before bedtime.

Time Your Medication

Take medication for pain or nausea about an hour before being intimate with your partner. Remember that some drugs for pain and nausea may interfere with sexual performance.

Set the Mood

Create an environment conducive to sexual activity. This will look different for every couple. You may want to play music, light candles, or simply put clutter away.

Talk With Others Who Understand

MyLeukemiaTeam is the social network for people with leukemia and their loved ones. On MyLeukemiaTeam, more than 8,400 members come together to ask questions, give advice, and share their stories with others who understand life with leukemia.

Are you experiencing intimacy issues since your leukemia diagnosis? Do you have strategies to help? Share your experience in the comments below or start a conversation by posting on your Activities page.

References
  1. How Cancer and Cancer Treatment Can Affect Sexuality — American Cancer Society
  2. Acute Myeloid Leukemia — MedlinePlus
  3. Key Statistics for Acute Myeloid Leukemia (AML) — American Cancer Society
  4. Chronic Lymphocytic Leukemia — MedlinePlus
  5. Leukemia — Chronic Myeloid — CML: Statistics — American Society of Clinical Oncology
  6. Leukemia — MedlinePlus
  7. The Impact on Sexuality After Diagnosis and Treatment for a Hematologic Malignancy: Findings From Australia — Oncology Nursing Forum
  8. Sexuality and Intimacy — Leukemia & Lymphoma Society
  9. Romantic Relationships of Emerging Adult Survivors of Childhood Cancer — Psycho-Oncology
  10. Intimacy, Substance Use, and Communication Needs During Cancer Therapy: A Report From the “Resilience in Adolescents and Young Adults” Study — Journal of Adolescent Health
  11. Sexuality of Young Women Surviving Leukaemia — Archives of Disease in Childhood
  12. Sexual Health Issues in Men With Cancer — National Cancer Institute
  13. Sexual Health Issues in Women With Cancer — National Cancer Institute
  14. Family Interactions in Childhood Leukemia: An Exploratory Descriptive Study — Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer
  15. Changes in Sexuality and Intimacy After the Diagnosis and Treatment of Cancer: The Experience of Partners in a Sexual Relationship With a Person With Cancer — Cancer Nursing
  16. Suggestions for Coping With Cancer and Intimacy — Leukemia & Lymphoma Society
  17. Psychotherapies — National Institute of Mental Health
  18. Self-Compassion, Stress, and Coping in the Context of Chronic Illness — Self & Identity
  19. The Link Between Lack of Sleep and Sex Problems — Psychology Today
Posted on June 8, 2021

A MyLeukemiaTeam Member

my sex life has been totally absent for a lot of years. I want to know if this is common in cll relationships

August 5
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What’s The Product To Use For Sexual And Vagina Dryness During Intercourse ..

July 11, 2024 by A MyLeukemiaTeam Member 2 answers
Mark Levin, M.D. is a hematology and oncology specialist with over 37 years of experience in internal medicine. Review provided by VeriMed Healthcare Network. Learn more about him here.
Paz Etcheverry, Ph.D. has an M.S. in food science and nutrition from North Carolina State University and a Ph.D. in food science and technology from Cornell University. Learn more about her here.

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