Sexuality and Intimacy

What is the Impact of Bone Marrow Failure Disease on Sexuality and Intimacy?

A medical illness can present emotional challenges concerning lifestyle, independence and routine activities and can impact sexual function.

Intimacy and sexuality are not life or death issues, but they are quality of life issues. Bone marrow failure may impact intimacy and sex drive from the physical and psychological side effects of treatment. Emotional and medical stressors can impact sexual function. 

Bone Marrow Failure Disease Symptoms Can Affect Sexuality and Intimacy

• Anemia Anemia: (uh-NEE-mee-uh) A condition in which there is a shortage of red blood cells in the bloodstream. This causes a low red blood cell count. Symptoms of anemia are fatigue and tiredness. :  Chronic fatigue, shortness of breath, chest pain
• Neutropenia Neutropenia: (noo-truh-PEE-nee-uh) A condition in which there is a shortage of neutrophils in the bloodstream. Neutrophils are a type of white blood cell. This results in a low white blood cell count. :  Increased risk for infection
• Thrombocytopenia Thrombocytopenia: (throm-buh-sie-tuh-PEE-nee-uh) A condition in which there is a shortage of platelets in the bloodstream. This results in a low platelet count. Bleeding and bruising often occur with thrombocytopenia. :  Easy bruising & bleeding

Side Effects of Medication Can Affect Sexuality and Intimacy

• Immunosuppressive agents like anti-thymocyte globulin (ATG ) (ALG) can cause fatigue and hypertension.
• White cell growth factors growth factors: Growth factors are naturally occurring hormones in your body that signal your bone marrow to make more of certain types of blood cells. Man-made growth factors may be given to some people with bone marrow failure diseases to help increase red blood cell, white blood cell or platelet counts. Red… like G-CSF (Neupogen® or Filgrastim Filgrastim: It is known as a hematopoietic growth factor or colony stimulating factorand is given by injection under the skin (subcutaneous) or in the vein (intravenous). Filgrastim is approved by the U.S. Food and Drug Administration (FDA) for use in cancer patients who are at risk of developing infection due… ®) can cause nausea/vomiting, muscle aches, fatigue and flu-like symptoms.
• GM-CSF Leukine® can cause bone pain, fatigue, nausea and flu-like symptoms.
• Immunomodulatory agents like lenalidomide lenalidomide: Lenalidomide is a capsule that is taken by mouth. It is approved for treating low-risk, transfusion-dependent myelodysplastic syndrome (MDS) patients with an abnormality of chromosome 5q. It is currently in clinical trials to test its efficacy with a broader range of MDS patients. For some MDS… (Revlimid®) can cause fatigue, nausea and joint pain.
• Hypomethlyating agents like azacitidine azacitidine: It works by reducing the amount of methylation in the body. Methylation is a process that acts like a switch to turn off or “silence” genes in certain cells. When these genes (called tumor suppressor genes) are turned off, MDS cells and cancer cells can grow freely. Azacitidine is approved by the U… (Vidaza®) can cause nausea/vomiting, diarrhea, fatigue and fever.
• Red cell growth factors like erythropoietin erythropoietin: (i-rith-row-POY-uh-tun) A protein made by the kidneys. Erythropoietin, also called EPO, is created in response to low oxygen levels in the body (anemia). EPO causes the bone marrow to make more red blood cells. A shortage of EPO can also cause anemia. (Procrit® or Epogen®) can cause joint pain and headache.
• Prescribed medications to help with mood can also interfere with desire and sexual response. Narcotic drugs (morphine, dilaudid, codeine), antiemetics, sedatives and tranquilizers can be responsible for decreased libido and impaired potency. Smoking, alcohol and substance abuse use can also negatively affect libido.

What Can You Do?

• Be aware of how the time of day impacts your libido. Know when your energy is greatest throughout the day and when you are most refreshed. Try taking any pain medication 30 minutes to an hour before sexual activity. 
• Your diagnosis may have changed how you look, but it does not have to change how you feel about yourself.
• Including good nutrition and exercise can help how you feel about yourself.
• Be patient with the physical effects. As you get better, you will feel and look better.
• Tell your partner how you feel about your intimate life and what you would like to change. Listen to your partner's point of view. Make an effort to communicate, and remember that problems before a serious illness don’t magically disappear during your illness.
• See a professional therapist to help you work through road blocks.    

Intimacy for Couples with Children

• Schedule a night out for the kids on a regular basis.
• Be honest and express yourself in front of your children.
• Find ways to connect with each child if you find that your activity level is limited.

Where to Go for Help

Talking with your partner is almost always the first step in resolving any issue. You can also turn to professionals for help. Who would you feel most comfortable discussing this with:  Your primary care doctor, hematologist hematologist: (hee-muh-TOL-uh-jist) A doctor who specializes in treating blood diseases and disorders of blood producing organs. /oncologist?  You can also ask them for referrals to mental health professionals, such as psychiatrists, psychologists or social workers.

Remember that appropriate timing of activity may increase enjoyment of sex.  You need to communicate about your needs.  Consider other ways to feel more sensual/sexual.  Know that sex is not the only form of intimacy.

Patience and a sense of humor are essential as you adjust to your new condition. Know that you are not alone and that you can work to change sexual and intimacy expectations from a “body thing” to a “mind thing”.