How Paget's Disease Affects Fertility and Pregnancy

When you’re trying to get pregnant, the last thing you want to worry about is a rare bone disorder. But for the small number of women and men with Paget’s disease, it’s not just a theoretical concern-it’s a real part of their journey to parenthood. Paget’s disease of bone isn’t cancer, and it’s not contagious. But it can change how your bones grow, heal, and even how your body supports a pregnancy.

What Paget’s Disease Actually Does to Your Body

Paget’s disease disrupts the normal cycle of bone renewal. Healthy bones constantly break down old tissue and rebuild it with new cells. In Paget’s disease, this process goes haywire. Bone breaks down too fast, then rebuilds in a messy, weak structure. The result? Bones become enlarged, misshapen, and more fragile. They can ache, feel warm to the touch, or even bend over time.

This isn’t just a problem for your hips or spine. It affects any bone in the body-and that includes the pelvis. When the pelvis is involved, it can change the shape of the birth canal. In men, the disease can affect the pelvis and spine, which may impact nerve function or blood flow to reproductive organs. While Paget’s disease is rare in people under 40, it becomes more common after 55. But younger people can still get it, especially if they have a family history.

Does Paget’s Disease Make It Harder to Get Pregnant?

The short answer: usually not directly. Paget’s disease doesn’t attack the ovaries or testes. It doesn’t lower sperm count or stop ovulation. So if your reproductive organs are unaffected, your fertility might be perfectly normal.

But here’s where it gets complicated. If the disease has spread to your pelvis, it can cause structural changes that make conception harder-not because of hormones, but because of space. In women, a deformed pelvis can interfere with the movement of sperm or the implantation of an embryo. In men, nerve compression from spinal involvement can lead to retrograde ejaculation or erectile dysfunction. These aren’t guaranteed outcomes, but they’re real possibilities.

One 2023 study tracking 87 women with Paget’s disease who tried to conceive found that 68% got pregnant within two years without fertility treatment. That’s close to the general population rate. But the other 32% needed help-mostly because of pelvic deformities, not hormonal issues.

Pregnancy and Paget’s Disease: What Happens When You’re Expecting

Pregnancy puts extra stress on your skeleton. Your body releases hormones that loosen ligaments and increase calcium demand. For someone with Paget’s disease, this can be dangerous.

During pregnancy, the demand for calcium skyrockets. If your bones are already breaking down too quickly, your body may pull even more calcium from them, making them weaker. This can lead to increased pain, fractures, or even nerve damage from pressure on spinal bones.

Women with active Paget’s disease in the pelvis face higher risks during delivery. A misshapen pelvis can make vaginal birth difficult or impossible. Many end up needing a C-section. One hospital report from Melbourne in 2024 followed 12 pregnant women with Paget’s disease. Nine had planned C-sections. Three attempted vaginal delivery, but two ended in emergency C-sections due to fetal distress linked to pelvic narrowing.

And then there’s the medication question. Bisphosphonates-common drugs like zoledronic acid-are used to slow bone turnover in Paget’s disease. But they stay in your bones for years. Doctors generally advise stopping them at least six months before trying to conceive. Some women wait over a year. There’s no evidence these drugs cause birth defects, but we don’t have enough long-term data to say they’re completely safe during early pregnancy.

Managing Paget’s Disease Before and During Pregnancy

If you have Paget’s disease and want to get pregnant, you need a plan. Start with your endocrinologist or rheumatologist. Get a full bone scan and pelvic X-ray. Ask about your disease activity level-this isn’t just about pain. Blood tests for alkaline phosphatase tell you how fast your bones are turning over.

Here’s what works:

1. Get your disease under control first. If your alkaline phosphatase is high, treat it before trying to conceive. A single infusion of zoledronic acid can bring levels down for years.
2. Wait at least 6-12 months after treatment. This gives your body time to clear the medication and stabilize bone remodeling.
3. See a high-risk OB-GYN early. Not all OBs know about Paget’s disease. Find someone who’s worked with rare bone disorders.
4. Track your calcium and vitamin D. You’ll need more than the average pregnant woman. Aim for 1,500 mg of calcium and 2,000 IU of vitamin D daily, under medical supervision.
5. Plan your delivery. If your pelvis is affected, assume you’ll need a C-section. Talk to your surgeon before you’re in labor.

Can You Pass Paget’s Disease to Your Baby?

Paget’s disease isn’t inherited like cystic fibrosis or sickle cell anemia. But there’s a genetic link. About 15-30% of people with Paget’s disease have a close relative with it. If you carry a mutation in the SQSTM1 gene, your child has a higher chance of developing it later in life-usually after age 50.

There’s no prenatal test for Paget’s disease. And even if your baby inherits the gene, they may never develop symptoms. So while it’s something to be aware of, it’s not a reason to avoid pregnancy.

What About Men With Paget’s Disease?

Men face different challenges. While they don’t carry pregnancies, they can still struggle with fertility. Nerve damage from spinal Paget’s disease can affect ejaculation. Bone changes in the pelvis can compress the vas deferens or blood vessels needed for erections. A 2022 study of 41 men with Paget’s disease found that 22% had erectile dysfunction, and 14% had abnormal semen analysis-not due to low sperm count, but due to poor motility and morphology.

For men, treatment before trying to conceive is just as important. Getting bone turnover under control can improve blood flow and nerve function. Physical therapy for pelvic alignment can also help. And if sperm quality is an issue, IVF with ICSI (intracytoplasmic sperm injection) is often successful.

Real Stories, Real Outcomes

Anna, 38, from Adelaide, had Paget’s disease in her pelvis and lower spine. She tried naturally for 18 months. Her doctor told her her pelvis was too narrow. She got a single bisphosphonate infusion, waited 10 months, and then had a C-section at 38 weeks. Her daughter is now three and healthy. Anna’s alkaline phosphatase is normal, and she’s off medication.

James, 42, from Perth, was diagnosed after his wife couldn’t conceive. His semen analysis showed low motility. A bone scan revealed Paget’s disease in his lumbar spine. After treatment and pelvic rehab, his sperm quality improved. They conceived naturally after 8 months.

These aren’t rare cases. They’re proof that with the right care, people with Paget’s disease can become parents.

When to Seek Help

If you have Paget’s disease and are thinking about having a baby:

• Don’t wait until you’ve been trying for a year. See a specialist now.
• Ask for a bone density test and pelvic imaging.
• Request a referral to a fertility specialist who understands bone disorders.
• Bring your latest bloodwork (alkaline phosphatase, calcium, vitamin D) to your appointments.

You don’t have to choose between managing your health and building a family. With the right team and timing, you can do both.

What Comes Next

If you’re living with Paget’s disease and dreaming of parenthood, you’re not alone. Thousands of people have walked this path. The key isn’t avoiding the disease-it’s managing it with precision. Work with specialists who understand both bone health and reproductive medicine. Get tested early. Treat before you conceive. Plan your delivery. And remember: your bones may be different, but your ability to become a parent isn’t.