How Paget's Disease Affects Fertility and Pregnancy
Nov, 18 2025
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:
- 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.
- Wait at least 6-12 months after treatment. This gives your body time to clear the medication and stabilize bone remodeling.
- See a high-risk OB-GYN early. Not all OBs know about Paget’s disease. Find someone who’s worked with rare bone disorders.
- 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.
- 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.
Can Paget’s disease cause infertility?
Paget’s disease doesn’t directly cause infertility by affecting hormones or gametes. But if it changes the shape of the pelvis or compresses nerves in the spine, it can interfere with conception or delivery. In men, it can affect ejaculation or erectile function. Fertility issues are often treatable with the right medical approach.
Is it safe to get pregnant with Paget’s disease?
Yes, but it requires careful planning. Active disease increases the risk of bone fractures, nerve damage, and complications during delivery. Women should have their disease under control before conceiving. Regular monitoring by a high-risk OB-GYN and a bone specialist is essential.
Can Paget’s disease be passed to a child?
Paget’s disease isn’t inherited in a simple way, but about 15-30% of cases run in families. A mutation in the SQSTM1 gene increases risk. Children who inherit this gene may develop the disease later in life, but most won’t. There’s no prenatal test, and the risk to the baby during pregnancy is extremely low.
Should I stop my Paget’s medication before trying to conceive?
Yes. Bisphosphonates like zoledronic acid stay in bones for years. Doctors recommend stopping treatment at least 6-12 months before trying to conceive. This gives your body time to reset bone remodeling without exposing a developing embryo to medication.
Do I need a C-section if I have Paget’s disease?
Not always, but it’s very common. If your pelvis is deformed or narrowed due to Paget’s disease, a vaginal birth can be risky. Most women with pelvic involvement plan for a C-section. Your doctor will use imaging to assess your pelvis shape and make a recommendation before labor.
How does Paget’s disease affect men’s fertility?
In men, Paget’s disease can affect fertility indirectly. Spinal involvement may compress nerves that control ejaculation, leading to retrograde ejaculation. Pelvic bone changes can reduce blood flow to the genitals, contributing to erectile dysfunction. Sperm quality may also drop due to these physical changes. Treatment and physical rehab can often improve these issues.
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.
Margaret Wilson
November 18, 2025 AT 16:02So let me get this straight-you’re telling me I can have a baby even if my bones are basically crumbling into a Jackson Pollock painting? 🤯 I’m crying. Not because I’m sad-because I finally feel seen. After years of being told ‘just relax and it’ll happen,’ now I have a roadmap. Thank you for writing this.
Bette Rivas
November 20, 2025 AT 04:43The clinical data presented here is remarkably thorough, particularly the 2023 cohort study showing 68% natural conception rates among women with Paget’s disease. This aligns with recent meta-analyses from the Journal of Bone and Mineral Research, which suggest that as long as serum alkaline phosphatase is normalized prior to conception, pregnancy outcomes are statistically indistinguishable from the general population. The critical variable is disease activity, not anatomical presence. Bone remodeling kinetics must be monitored quarterly via biochemical markers, not just imaging. Many clinicians still rely solely on radiographs, which is inadequate for dynamic assessment.
Additionally, the recommendation to wait 6–12 months post-bisphosphonate is conservative but evidence-based. Zoledronic acid has a half-life in bone exceeding 10 years, and while no teratogenicity has been documented in animal models, human embryonic exposure remains unquantified. The 2024 Melbourne cohort, though small, provides pragmatic clinical guidance: 75% of pelvic-involved patients required planned C-sections. Pre-conception pelvic radiogrammetry should be standard of care.
For men, the emphasis on nerve compression and vascular compromise is underappreciated. Retrograde ejaculation due to lumbar spondylosis is often misdiagnosed as psychogenic infertility. A simple post-ejaculatory urinalysis for sperm can confirm this. And yes, ICSI is indeed the most reliable path forward when motility is compromised by structural changes in the vas deferens. Physical therapy targeting pelvic floor neuromuscular re-education should be integrated into preconception care.
darnell hunter
November 20, 2025 AT 05:38It is regrettable that such a rare condition is being elevated to the level of a mainstream reproductive concern. The statistical relevance of this discussion is negligible. The healthcare system should not be burdened with specialized protocols for conditions affecting fewer than 1 in 10,000 individuals. Fertility clinics are already overwhelmed. This is not medical progress-it is medical inflation.
Hannah Machiorlete
November 21, 2025 AT 07:25okay but like… why is everyone acting like this is some miracle story? my aunt had paget’s and she got a c-section and then her spine collapsed 3 years later and she’s in a wheelchair now. and her kid? has zero bone density. like. is this really the vibe we’re going for? just… please don’t make me have a baby with broken bones. i’m not a lab rat.
Jeff Moeller
November 23, 2025 AT 02:53Life doesn't ask if you're ready. It just gives you bones that don't behave. And then it gives you love. And that's enough. You don't need perfect bones to make a perfect human. Just the will to try. And maybe a good doctor.
Tyrone Luton
November 24, 2025 AT 22:13It’s fascinating how modern medicine has turned reproduction into a logistical operation. We’ve replaced the mystery of conception with a checklist: scan, wait, treat, plan, avoid, monitor. Where is the grace in that? Where is the acceptance of imperfection? Paget’s disease doesn’t make you less of a parent-it makes you more human. And humanity has always found a way, even when the bones were wrong.
william volcoff
November 25, 2025 AT 21:42Interesting that the article mentions sperm motility issues in men but doesn’t touch on the fact that bisphosphonates can alter bone marrow microenvironment. There’s emerging data from mouse models suggesting these drugs may temporarily suppress spermatogonial stem cell activity-even after clearance. We’re assuming recovery is complete after 6–12 months, but what if it’s not? The 2022 study cited had a small sample and no pre-treatment baselines. I’d love to see longitudinal semen analysis data before and after treatment.
Also-why is everyone assuming women are the only ones who need to ‘manage’ their disease before pregnancy? Men are just as much a part of this. If your pelvis is deformed, your partner’s cervix doesn’t care. You both need imaging. You both need a plan.
Herbert Scheffknecht
November 26, 2025 AT 20:43What if the real question isn’t whether you can get pregnant with Paget’s-but whether society is ready to support you when you do? We’ve built a system that treats infertility like a technical glitch. But this isn’t a broken machine. It’s a body that’s been through war and still chose to love. The real miracle isn’t the C-section or the ICSI. It’s the fact that someone with broken bones still believed they could hold a baby. And that’s not medicine. That’s courage.
rachna jafri
November 27, 2025 AT 13:26Wait… let me get this straight-big pharma pushed bisphosphonates for decades, now suddenly they’re ‘safe’ after 12 months? Who funded that Melbourne study? And why are we ignoring the fact that Paget’s is linked to paramyxovirus exposure? The CDC buried that paper in 2019. Bone deformities? Maybe it’s not the gene-it’s the vaccines. Or the 5G towers. Or the fluoridated water. You think this is about bones? It’s about control. They want you to think you need their drugs, their scans, their C-sections. But what if your body knows better?
prasad gali
November 28, 2025 AT 02:20The clinical management outlined here lacks adherence to international consensus guidelines. The use of alkaline phosphatase as a sole marker for disease activity is suboptimal. N-telopeptide and bone-specific alkaline phosphatase isoforms should be utilized in tandem. Furthermore, the recommendation for 1,500 mg calcium daily in pregnancy is excessive and potentially hypercalcemic in patients with renal impairment. The current KDIGO guidelines recommend 1,000–1,200 mg for pregnant women with metabolic bone disorders. This protocol risks iatrogenic complications.
Paige Basford
November 28, 2025 AT 03:26Okay but I just read this and I’m so relieved-I have Paget’s and I’ve been terrified to even think about kids. But now I feel like I can breathe again. Also, can someone send me the name of that OB-GYN in Melbourne? I need to book a consult ASAP. And can we make a support group? Like, Paget’s Parents United? I’ll start the Facebook page.
Ankita Sinha
November 28, 2025 AT 22:15You are not alone. I have this too. I got pregnant after 9 months of treatment. My son is 1 now. He’s perfect. He doesn’t know my bones are weird. He just knows I hug him tight. And that’s all that matters. You can do this. I believe in you. 💪
Kenneth Meyer
November 30, 2025 AT 06:24There’s a quiet dignity in choosing to become a parent despite knowing your body might betray you. It’s not defiance. It’s not optimism. It’s simply the refusal to let biology write the ending of your story. The bones heal. The nerves recover. But the love? That was never broken.
Donald Sanchez
December 1, 2025 AT 16:13bro i just got diagnosed last week and i’m 29 and trying to get my gf preggo and now i’m like… am i a monster? 😭 this post is literally the only thing that made me not cry. thank you. also i think my cat just looked at me like she knows. 🐱