Cystic Fibrosis: What Should I Know About Sex?

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You may be thinking about what it means to be involved in a sexual relationship. It’s normal to think about sex and have sexual feelings. Having CF has no impact on your sexual orientation or gender identity.

Whether you have CF or not, you can have vaginal, anal, or oral sex. However, there are many things that are important to think about before you decide to have sex, including whether this is what you want, whether this is the right time in your life, and how to prevent sexually transmitted infections and unwanted pregnancies.

Click here to take a quiz to see if you are ready for sex.

You should never feel pressured to have sex. Sexual consent means there is a clear agreement by all participants for any type of sexual encounter for that one time. It’s important to have sexual consent every time, not just the first time. Sexual consent is not just about vaginal, anal, or oral sex, it also includes kissing, making out, cuddling, or touching.

Sex is an important part of life for many people. CF does not decrease your desire to have sex or the need to be intimate with your partner. You can absolutely still enjoy vaginal, anal, or oral sex if you have CF. However, whether or not you have CF, you may have certain concerns. For example: you may have trouble becoming aroused (getting “turned on”), lubricated (getting “wet”), or having an orgasm. If you are experiencing any of these problems, it’s always important to be able to talk to your partner and communicate about what feels good.

Frequently Asked Questions

Do people with CF have any symptoms when they have sex?

Coughing

For people with CF, coughing during or after sex is very common. In a recent survey, about 1 in 3 young women with CF reported coughing during or after sex more than half the time. A small number of people with CF also reported coughing up blood during or after sex. If you have any of these symptoms, you are not alone—other people with CF have experienced the same thing!

Shortness of breath (SOB)

Some people with CF, especially those who have some severe lung disease, can have trouble breathing during or after sex. During sexual activity your heart rate increases, just like it does when you exercise. If you have become short of breath when you work out, you may have the same trouble during sex. Generally, if you feel fine after climbing two flights of stairs, you are physically fit enough to have sex and do not worry about being short of breath. If you need oxygen when you exercise or any other time during the day, you should wear your oxygen during sex.

Practical tips to help you enjoy sex when you have CF:

  • Take your time, take breaks, and don’t be afraid to tell your partner if you are having symptoms.
  • Use your short-acting bronchodilator (your albuterol or Ventolin®) 20 to 30 minutes before you have sex. This may help open up your airways and prevent symptoms.
  • Do your airway clearance before you have sex to clear mucus and help you breathe easier.
  • Avoid anything that makes you cough or triggers issues with breathing such as using or being around strong perfumes or cigarettes.
  • Try sexual positions that require less energy and do not put pressure on your chest.
  • Use pillows under your back and talk with your partner about them playing a more active role during sex.

Why does sex hurt sometimes?

There are different reasons why sex might be uncomfortable or hurt sometimes. Don’t try to tough it out. Pain is the body’s signal that something isn’t right! Here are a few reasons why sex may hurt:

  • Vaginal dryness: Sometimes sex can be painful because the inside of your vagina is dry and can cause irritation and/or pain. You may have noticed that your vagina makes its own lubricant (fluid), and your body may make more of it during times when you’re feeling aroused or “turned on.” Taking things slowly and not rushing to have a sexual encounter before you’re ready can help give your vagina a chance to make more of that fluid which will likely make the experience more comfortable for you.
  • Yeast infections: If you notice that you feel pain or burning when you’re having sex, you could have a yeast infection. Yeast infections are very common in women with CF and can be treated with medications.
  • Allergy to latex or spermicides: Some people are allergic or sensitive to latex (which is what most condoms or dental dams are made of) and/or spermicides (the gel that kills sperm). If you are allergic or sensitive, symptoms may include pain, burning, frequent urination, rash in or around the vaginal area and/or a vaginal discharge that is different for you. Talk to your provider about your symptoms.
  • Sexually Transmitted Infections: If you are sexually active and notice a vaginal odor or discharge that isn’t normal for you, pain when you urinate (pee), or itching in your vaginal area, talk to your CF team and make an appointment and get checked.
  • Vulvodynia: Vulvodynia is a treatable condition that causes discomfort around the opening of the vagina and can make sexual intercourse painful that has no known cause. Only a health care provider can tell if you have this condition.

What should I know about lube?

“Lube,” short for lubricant, can help make sex comfortable and water-based lubricant can help prevent condoms from breaking. Most pharmacies sell lube right next to the condoms – look for something simple. Do not use flavored lube, or lube that claims to be warming or numbing as they can be irritating. Most latex condoms come with a small amount of lube, however, you may choose to use more. Some lube contains glycerin, a type of sugar, which can increase the chance of getting a vaginal yeast infection. If you get a lot of yeast infections as someone with CF, try choose lube that does not contain glycerin.

NEVER use oil, lotion, or petroleum jelly (Vaseline) for lubrication because these products can cause the condom to break! Remember, if you’re having sex, always use a condom for vaginal sex or a dental dam for oral sex to help prevent STIs.

What if I’m allergic to latex?

Some people can be allergic or sensitive to latex, which is what most condoms and dental dams are made of. Symptoms can include soreness, itchiness and/or rash in or around the vaginal area. Try using a polyurethane condom (including the female condom) or a silicone dental dam and see if that helps.

What if I’m allergic to spermicides?

Some people are allergic to spermicides, while others have some irritation in or around their vagina, vulva, or penis when they use them. Nonoxynol-9 is the only active chemical in spermicides made in the United States. Women/men who are truly allergic to nonoxynol-9 should not use any birth control method that contains spermicide with this ingredient. Talk to your health care provider to see if there is another spermicide you can use.

How do I talk with my partner about my symptoms during sex?

Being able to talk with your partner about being intimate or having sex is important in any relationship. Tell your partner what feels good and what doesn’t. Try to be open and honest if you are having symptoms. If you always cough during sexual encounters, tell your partner beforehand and talk about how common that is in CF. Tell your partner you may need breaks if you are short of breath and may need to slow things down. Be sure to tell your partner if you are having any pain or soreness. If you have a G tube, a port, or a PICC line in place for a round of antibiotics, it’s a good idea to talk about that with your partner.

You may be embarrassed to talk about these things and it’s ok to feel that way, but these conversations are important. Just remember that your partner should be supportive and want to help you enjoy a sexual experience. Many people with CF struggle with how to talk with their sexual partners and significant others about CF. Talk to your CF team if you are having trouble finding a good way to start this conversation.

Some people find it helpful to talk with their parents or family members about the decision to have sex.  Family can be a great support for getting sexual health care and talking about relationships. Other people chose to make decisions by talking with other trusted adults, including someone on their CF team or primary care doctor.

What about confidentiality? I don’t want my parents to know that I’m having sex.

What you tell your health care provider or CF team about your sexual behavior is confidential. It’s okay to ask your parents or family members to step out of the room for parts of your visit. By law, your medical providers cannot talk about this information to anyone else unless he/she seriously believes there is danger to you or to others, or that you are not able to make safe decisions on your own. This means your parents, teachers, partners, or friends can’t find out any information from any of your medical providers or CF team about anything, including if you are having sex. Although your medical providers do their very best to keep your information private, there is a chance your health insurance company or pharmacy may send information to your home. You may find it helpful to talk to your parents about your health and your worries.

Talk with your CF team if you are experiencing any symptoms during sex. Although it may be embarrassing to start a conversation with your health care providers about this, it gets easier and they can help you think about options for treatment and help you manage your symptoms.

Here are some specific talking points and tips that may help you discuss sexual health with your medical team:

  • Tell your CF team if you are having symptoms or if you are worried about having any symptoms during sex.
    • Example 1: “During sex, I sometimes cough/have shortness of breath/cough up blood.”
    • Example 2: “Sex is sometimes painful for me. I worry about having [describe your symptoms] during sex.”
  • Tell your CF team if you are having trouble talking with your sexual partner(s). Ask for suggestions on how to bring certain issues up with your partner.
    • Example: “It’s hard for me to talk to my partner(s) about symptoms I’m having or I might have during sex.  Do you have any guidance about how to have that conversation?”
  • Ask your CF team if you should be referred to see a specialist.
    • Example: “What can I do to help with my symptoms during sex? Should I see a specialist to help with these symptoms?”

There is a lot of information to consider when you have CF and start having sex. You can print this guide or have your provider refer to this webpage during your visit.