Relationships, Sex, and Intimacy Considerations with Cystic Fibrosis

Sex and intimacy are two of the great pleasures of adult life. However, many people with cystic fibrosis (CF) often must leap extra hurdles when they become old enough and physically mature enough to consider having a sexual relationship.

Starting new relationships

Establishing a new intimate relationship can be intimidating for anyone but may present special challenges for someone with CF. Issues to be discussed with a prospective partner can range from when to reveal your diagnosis to fertility to which positions make it difficult to breathe during sex. Explaining your daily regimen to stay healthy may also seem daunting but as with any new relationship, open and honest communication is best.

Body image and self-esteem

Body image and self-esteem can take a beating among people with CF, especially teens. Low self-esteem, excessive self-consciousness, and poor body image can delay or inhibit sexual relationships.

Frequent concerns about body image include:

• Small stature or delayed puberty
• Thinness
• Finger clubbing
• Scars from surgery
• Incontinence caused by heavy coughing
• Frequent gas and bloating
• Stained teeth and yeast infections caused by antibiotics
• Visible equipment such as g-tubes and ports
• Barrel chest or back hump due to advanced lung disease¹

The good news is that adhering to your treatment plan can decrease many of these issues.

Practicing safe sex with cystic fibrosis

While 98% of men with CF are infertile, and women with CF are more likely to have a hard time getting pregnant, sexual desire and performance is the same as the rest of the population. That’s why, like the rest of the population, people with CF should protect themselves from sexually transmitted diseases (STDs) by using condoms. Other forms of contraception help prevent pregnancy without protecting against STDs.²

Contraception

Unless pregnancy is desired, everyone with CF should use contraception just like anyone else. Having CF is not a reliable form of birth control.

There are some special considerations women with cystic fibrosis should consider when choosing a contraceptive method. These are:

• Birth control pills, the contraceptive patch and the contraceptive ring may be less effective when taking certain antibiotics. Condoms may make a good back-up during these times.
• Birth control pills may not be a good option for women with CF who also have liver disease, CF-related diabetes or pulmonary hypertension.
• IUDs and diaphragms may be a good option for women with CF.
• Contraceptive injections are not recommended for women with CF because it increases the risk of developing osteoporosis.^2,3

None of these methods of contraception protect against STDs.

Practical tips for intimacy

There are a few steps you can take to make it easier to breathe and make sex more enjoyable if you have cystic fibrosis. These tips include:

• Use your short-acting bronchodilator 20 to 30 minutes before sex.
• Exercise prior to sex to dislodge mucus.
• Adopt positions that require less energy and do not put pressure on your chest.³

Finally, a simple rule of thumb: If you can climb two flights of stairs and feel fine, you are fit enough to have sex without worrying about shortness of breath.^1,4

Lack of desire

Like anyone with a serious chronic illness, people with CF often report a lack of desire or low sex drive when feeling especially ill or weak. Depression, anxiety and low self-esteem, which are more common in people with CF than the general population, may also contribute to a lack of desire for intimacy.⁵

Finally, worries about passing the CFTR gene to offspring and not being able to care for their children sometimes contribute to a lack of desire for sex or intimacy.⁴