Bleeding during sex. Periods that last three weeks. Painful bruises on your body. Having a bleeding disorder can be more of an excuse to avoid sex than the cliché, “Not tonight, dear, I have a headache.”
It can be difficult for women with bleeding disorders to feel sexy or desire intimacy with their partner when they’re dealing with such issues. And because sexual problems are not often discussed in public, women with bleeding disorders can feel isolated and unsure where to turn for help.
“People don’t talk about it,” says Sue Fletcher, PhD, MSW, research and special programs coordinator for Hemophilia of North Carolina in Morrisville. Women can feel uncomfortable discussing these issues with their female friends, especially those who don’t have a bleeding disorder. Problem-solving with their partners on how to work around the issues can also be awkward. “There are elements of shame and guilt, and feelings of not being desirable,” says Fletcher. She has hypodysfibrinogenemia, a type of factor I deficiency.
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The National Hemophilia Foundation’s (NHF’s) Victory for Women initiative wants to provide women a forum to discuss sex and intimacy, and share resources to help with sexual issues related to bleeding disorders. A session on intimacy for women and adolescent girls with bleeding disorders will be held during the 2011 NHF Annual Meeting in Chicago. The session is scheduled for 3 to 4 p.m. on Friday, November 11; check the final program to confirm. Certified sex therapist Lisa Thomas, LCSW, LMFT, will lead it. Participants will be asked to sign a confidentiality statement and can submit questions anonymously.
Tiffany Intal, a sex educator from Daly City, California, whose daughter, Niki, has severe factor VII deficiency, was surprised to find little information online about sex and bleeding disorders. Although Niki is only 2 1/2, Intal wants to be prepared to modify the “sex talk” when her daughter reaches puberty. “I didn’t even know until I attended an Annual Meeting session last year that, besides first intercourse, you could bleed on a regular basis during sex,” says Intal. She is a member of the Victory for Women Task Force.
Even if they aren’t planning to have sex right away, adolescent girls still worry about how their bleeding disorder will affect dating and their future sexual activity, says Ruth Ann Kirschman, WHNP, MS, another task force member. “People think ‘quality of life’ is this airy psychobabble, but it is pertinent,” she says. Bleeding issues can affect teen girls’ body image and self-esteem.
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Intal wants to arm her daughter with knowledge so she can navigate confidently through puberty and beyond. “That same amount of time we spend making sure our daughters are prepared for their period should also be spent preparing them for when they become intimate,” she says.
Victory for Women plans to develop resources to educate females with bleeding disorders and moms of girls with bleeding disorders about sexual issues. While there are medications to help regulate periods, such as birth control pills, not everyone will find relief from the symptoms of menorrhagia. “We may never get these women into the so-called ‘normal’ pattern of five days or fewer of bleeding,” Kirschman says. “They may always have a scattered, irregular pattern that they have to deal with.”
Young women with bleeding disorders may delay sexual experiences, lagging behind their peers, says Kirschman. While parents may be pleased that their daughters aren’t having sex, a delay in kissing, dating and other types of emotional and physical intimacy can have ramifications, even into middle age. “I don’t think parents realize how deeply that affects girls’ psyche and their self-esteem,” Kirschman says. Young women have told her that when they became intimate with a partner, they felt unprepared and embarrassed to discuss issues related to their heavy bleeding.
Hemophilia of North Carolina wants to equip women and adolescents with bleeding disorders with the tools they need so they are comfortable talking about sexual issues, among themselves and with their partners. With a Victory for Women grant, the chapter will host a series of dinners across the state in 2011–12 for women and teenage girls with bleeding disorders, and mothers of teenage girls with bleeding disorders.
The chapter will host two dinners each in Raleigh, Winston-Salem and Charlotte beginning this fall. The first dinner will focus on intimacy and self-esteem, the second on family planning.
Thomas, who will lead the Annual Meeting session, encourages women to reframe their outlook. “You can look at your medical condition as a barrier, or you can start figuring out how to have a sexual relationship with a bleeding disorder,” she says.
Women who avoid or are uncomfortable with sex when they’re bleeding heavily can be intimate with their partners through sexual activities other than intercourse, Thomas says. “I help couples understand what they can do and what feels good to them, where they like to be touched and what they feel comfortable with.”
As women begin to acknowledge what they want, they can feel more confident in discussing sex and intimacy with their partners. “Helping them to have a language to talk to their partners about what’s going on with them contributes to fewer issues around body image and self-esteem,” Thomas says.
With coaching and encouragement, women with bleeding disorders can start seeing themselves as desirable and enjoying intimacy.