Does Primary Ciliary Dyskinesia Cause Infertility?

Yes, Primary Ciliary Dyskinesia (PCD) frequently causes infertility or subfertility in both men and women, but it does not mean you cannot have children. Because PCD affects the microscopic hair-like structures (cilia and flagella) in the body, it creates physical roadblocks for natural conception ^[1]. However, natural conception is occasionally still possible, and assisted reproductive technologies like IVF are highly successful at helping people with PCD build families ^[2]. (Note: This information also applies if you have Kartagener syndrome, a specific subtype of PCD.)

Why Does PCD Affect Fertility?

To understand how PCD impacts fertility, it helps to look at the biology of how pregnancy happens. The condition impairs motile cilia (microscopic hairs that sweep fluid and cells) and flagella (the tail-like structures on some cells) ^[1].

• In Men: Sperm cells rely on their tail (flagellum) to swim through the female reproductive tract to reach the egg. In men with PCD, these tails are usually structured incorrectly or do not move properly ^[3][4]. This leads to asthenozoospermia, a medical term for sperm that are alive but unable to swim effectively, making natural fertilization extremely difficult ^[4][5].
• In Women: The fallopian tubes are lined with motile cilia that act like a microscopic conveyor belt, gently sweeping the released egg from the ovary toward the uterus. When these cilia are missing or do not beat normally due to PCD, the egg struggles to travel through the reproductive tract ^[6].

Can I Conceive Naturally with PCD?

While natural conception is much harder with PCD, it is not completely impossible ^[7]. Many people with PCD are considered “subfertile” rather than completely sterile ^[6].

For women, muscle contractions in the fallopian tubes can sometimes still push an egg to the uterus even without functioning cilia. However, because the journey is impaired, women with PCD have a significantly higher risk of experiencing an ectopic pregnancy ^[8]. This happens when a fertilized egg gets stuck and implants in the fallopian tube instead of the uterus. If you have PCD and discover you are pregnant naturally, it is vital to see an obstetrician immediately to confirm the pregnancy is safely in the uterus.

For men, natural conception is exceptionally rare because sperm motility is almost always severely compromised ^[4][5].

Building Your Family: IVF and ICSI

If you are struggling to conceive naturally, there is excellent news: assisted reproductive technologies (ART) are highly effective for patients with PCD ^[2][9]. Because the main issue is a mechanical transport problem rather than an issue with the underlying genetic quality of the egg or sperm, modern medicine can simply bypass the roadblocks.

• For Women (IVF): In Vitro Fertilization (IVF) completely bypasses the fallopian tubes. Doctors extract the eggs directly from your ovaries, fertilize them in a lab, and then place a healthy embryo directly into your uterus. Since the fallopian cilia are no longer needed, IVF provides a very reliable pathway to pregnancy ^[6].
• For Men (ICSI): Men with PCD usually have healthy, viable sperm—they just can’t swim. A specialized form of IVF called Intracytoplasmic Sperm Injection (ICSI) solves this. An embryologist selects a single, healthy sperm and injects it directly into the egg ^[2]. For most men with PCD, a standard semen sample is sufficient for the embryologist to find living sperm for ICSI, meaning minor surgery for sperm extraction is often unnecessary. Studies show that for men with PCD, ICSI results in fertilization and clinical pregnancy rates that are just as high as those for people using ICSI for other common fertility issues ^[2][9].

Genetic Testing and Embryo Selection

PCD is typically inherited in an autosomal recessive pattern. This means that a child will usually only be born with PCD if both parents carry a mutated gene. A genetic counselor can test your partner to see if they are a carrier, which can provide immense reassurance. If your partner is a carrier, you have the option during IVF to use Preimplantation Genetic Testing (PGT-M), which allows doctors to test the embryos for PCD and select an unaffected embryo before transferring it to the uterus.

Carrying a Pregnancy with PCD

While much of the focus is on the mechanics of getting pregnant, it is equally important to consider what it means to be pregnant with PCD. PCD is primarily a pulmonary (lung) disease, and pregnancy significantly alters how your respiratory system works. As the baby grows, it compresses the diaphragm, and your body demands more oxygen, which can exacerbate chronic lung issues.

If you are a woman with PCD planning to carry a pregnancy, you should consult your pulmonologist and a Maternal-Fetal Medicine (high-risk obstetrician) specialist before you conceive. They can help optimize your lung health, review the safety of your current medications during pregnancy, and establish a monitoring plan to keep both you and your baby safe.