Hemophilia and Sex

Q. Is it safe for me to have sex?
A. Yes, of course. If and when you choose to have sex is a decision you and your partner should make when the time is right, but sex can be a natural and important part of a healthy relationship. But, you do have to be responsible. In some ways sex is like any other activity you participate in: the more strenuous or adventurous it is, the greater your risk of getting a bleed.

Make sure you wear a condom whenever you have vaginal, anal, or oral sex. Condoms are not only a form of birth control, but can also protect you from becoming infected with viruses such as HIV and hepatitis B or C, or other sexually transmitted diseases.

Q. Should I tell my partner about my hemophilia before we have sex?
A. If you’re close enough to consider having sex with someone, you should be close enough to discuss your hemophilia. This not only means that you are being responsible and are taking care of yourself, but that you’re also giving your partner the opportunity to be considerate and caring of you, which is an important aspect of any relationship.

And, of course, if you have HIV, hepatitis B or C or other sexually transmitted disease, your partner has a right to know before you engage in any sexual activity—it’s the only responsible approach to take.

Q. Is making out safer than actual intercourse?
A. It is just as important to be careful when kissing, petting, or having oral sex because you can still run into problems. Anything which can draw blood to the skin’s surface—such as biting, nibbling, or getting a hickie—can be more of a problem for someone with hemophilia than for someone without. If someone bites you and inadvertently breaks the skin, you will bleed for a long time, be in pain, and may risk an infection. You may want to ask your partner to remove any sharp jewelry, including lip or tongue studs, to lessen your risk of getting cut.

Q. Is it OK for me to masturbate?
A. Many people (like your mom!) may consider masturbation off-limits for discussion, but it’s a healthy and natural way to explore your own body and sexuality. It’s also nothing to be ashamed of; approximately 98 percent of boys—which means pretty much everyone—has had an orgasm through masturbation by the time he’s 18.

Keep in mind though that you can get a bleed anywhere that blood flows, including your penis. A penile injury may cause external bleeding, discoloration of urine, swelling or pain. If you have any of these symptoms, call your doctor right away.

Through masturbating, you can also experience an internal bleed in your psoas muscles. These muscles are located on either side of your lower spine and extend through your pelvic area to your hip joint; they allow you to move your hips freely and help you maintain an upright posture. Psoas bleeds may not be readily apparent, but if you can’t straighten your legs while lying down or get out of bed without using your hands to support yourself, go to the emergency room for treatment.

Q. Are some sexual positions better than others?
A. Sexual positions don’t usually increase your risk of bleeds, but if you have limited movement in your joints or suffer from joint pain, some positions will be more comfortable for you than others. Supporting your weight on top of your partner, for example, might be uncomfortable and put too much strain on your joints. Lying on your back with your partner above you may be a better alternative. Lying side by side may also be easier. Know your limitations and discuss different alternatives with your partner. And remember that there’s no need to be embarrassed. Discussing sexual preferences, including positions, is a conversation that most sexual partners have—even if hemophilia is not part of the equation—as their relationship progresses.

• Journalist Carol Sorgen interviewed Ed Kuebler, social worker at the University of Texas Gulf States Hemophilia and Thrombophilia Center, for this article.