Cystic Fibrosis: Talking with Your CF Team about Sexual and Reproductive Health

Many people with CF have known their CF team or doctor since they were a baby. This may make it easier for you to talk about your sexual and reproductive health or you may still feel embarrassed. Either way your CF providers care about you and your health and will try to answer any questions you have as well as discuss options for treatment if you need it. Read on to learn about helpful ways to talk about sexual health with your CF team.

Why should I be concerned about my sexual health?

CF can have unique effects on a woman’s sexual health such as:

  • delayed puberty
  • worsening of CF symptoms during your menstrual cycle
  • urinary incontinence
  • vaginal yeast infections
  • coughing during sex
  • special considerations around what type of contraception to use
  • some CF medications may interact with your birth control method and medicines used to treat vaginal yeast infections and STI’s.
  • fertility
  • pregnancy

Each member of your CF team is an expert in CF. They can help you understand issues related to your sexual and reproductive health and give you resources and/or referrals for specialized care if needed. They also know you and your medical history and medications better than any other health care provider.

Are my conversations about sexual and reproductive health confidential?

It’s important to remember that your CF team is your medical provider, not your parent’s or family’s. What you tell your CF team about your sexual behavior is confidential. Your provider(s) will likely offer you time to talk without your parents present but, if they forget, it’s okay to ask. It’s also okay to ask your family members or partner to give you time alone with your doctor to discuss these topics. By law, your medical providers cannot talk about this information to anyone else unless they believe 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 your CF team about anything, including if you are having sex, unless you give your permission. Although your CF team does their very best to keep your information completely private, there is a chance your health insurance company or pharmacy may send information to your home. Talk with your CF team if you are worried about this.

Another option might be to get your sexual health care at a clinic that offers free or low-cost care without billing your insurance company (such as a Planned Parenthood or a local family planning clinic). If you choose to seek care with another women’s health provider, make sure to tell them you have CF and may have some disease-specific sexual and reproductive health issues that they should know about.

How should I start a conversation about sexual and reproductive health with my CF team?

Know that your CF providers are there to help.

Your CF team talks with patients about things that may seem embarrassing or personal all the time. Your questions are not going to surprise them and they have probably heard the same concerns from other patients before. It is part of their job to take care of the “whole” you affected by CF! Knowing about your sexual and reproductive health can help them provide better care for you.

Example: You could start by saying, “I feel embarrassed about what I’m going to tell you, but I need your advice.”

If you feel embarrassed to ask questions out loud, you could bring a list of questions to your provider. You could also call your team and ask your questions over the phone or email your questions/concerns to your CF team before your scheduled clinic appointment.

Be direct.

If you have a problem that needs immediate attention, it’s best not to wait too long to bring it up. You don’t want to walk away from the conversation feeling like you missed an opportunity to get your questions answered. Also, by asking a direct question, you’re more likely to get a clear and direct answer, which is usually much easier to understand. Don’t leave without getting answers to all your questions. Also, it might be a good idea to review the treatment plan with your provider before you leave the office, to make sure you understand what you need to do.

Example: “You would like me to _______________, right?”

Think about talking to another member of the CF team or another health care provider.

You have many different people on your CF team that you can talk to, including your doctor, nurse, social worker, dietitian and others. You may be more comfortable talking to a particular member of the team about sexual and reproductive health issues. If you talk to one of your providers and you don’t feel like they answered your entire question, you may find it helpful to talk to someone else on the team or your primary care doctor. You can also ask your provider to address the issue again or ask if there’s a specialist you can speak to.