Living with sickle cell disease (SCD) means you may know the pattern of a pain crisis well. But not every pain in your hips, shoulders, or other joints is necessarily another crisis. Sometimes, the difference isn’t obvious at first.

Avascular necrosis (AVN) is a bone condition that most often affects the hip or shoulder. It is common among people with SCD and can initially feel much like a typical pain crisis.

That overlap can make AVN easy to miss early on, especially when you’re used to managing SCD pain or trying to judge whether a new pain is different. Over time, though, the pain may linger after a crisis would normally fade. It may also keep returning in the same location or come with stiffness or continued pain with movement of the affected area.

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This article explains what causes AVN, which signs suggest that pain may be more than a crisis, how doctors diagnose it, and what treatment can look like.

How Does Sickle Cell Disease Cause Avascular Necrosis?

Sickle cell disease causes red blood cells to become stiff, crescent-shaped, and sticky. These sickled cells, along with sticky white blood cells and platelets, can block small blood vessels, including ones that supply blood to the bones in your joints.

When the bone doesn’t get enough blood, bone tissue can start to die. This process is called avascular necrosis.

AVN usually shows up in the hip or shoulder joints. These are ball-and-socket joints, and the rounded ends of these bones have a limited blood supply. When sickled cells block that blood flow, bone tissue can die, and the joint surface can slowly change shape.

How AVN Develops Over Time

AVN can be tricky to catch early. A sickle cell pain crisis may build and then fade, but its timing and pattern can vary. AVN, on the other hand, may feel like a crisis at first, with pain in the affected joint that does not completely improve.

The pain can slowly worsen — often over months or years. The two can be easy to confuse in the beginning because both can cause deep, severe pain. With AVN of the hip, the pain is often in the groin or side of the hip.

The likelihood of developing AVN goes up as you get older. It can also affect multiple joints. If it starts in one hip, for example, it often affects the other hip, and sometimes a shoulder as well.

How Do Doctors Diagnose Avascular Necrosis?

Getting a diagnosis usually starts with a physical exam. Your doctor will check how the joint moves, ask about your pain, and look for stiffness, swelling, or a limp.

If AVN seems likely, imaging comes next. Doctors often start with an X-ray, but magnetic resonance imaging (MRI) is more sensitive, meaning it can catch changes in the bone before they’d show up on an X-ray. That makes MRI especially useful for finding avascular necrosis early, when treatment tends to work best.

What Happens After Imaging?

Your sickle cell doctor may also refer you to a bone specialist, called an orthopedist, for a closer look. Doctors use imaging to assess how advanced the AVN is, which helps guide which treatment options make the most sense for you.

Avascular necrosis isn’t a life-threatening condition. It affects joint function and day-to-day comfort, not how long you’ll live. Getting a checkup helps you and your doctor catch problems early, when they are easiest to manage.

What Are the Treatment Options for Avascular Necrosis?

Treatment for avascular necrosis depends on how much of the joint is affected and how early it’s caught. Options range from everyday care to procedures that protect or replace the joint.

Starting With Nonsurgical Care

Although nonsurgical care won’t repair bone that’s already damaged, it can ease pain and help you stay active. For early-stage AVN, it’s often the first step.

Pain management may include over-the-counter or prescription medicines, depending on how much pain you’re having. Limiting high-impact activities and using mobility aids like a cane, crutches, or a brace can take significant weight and stress off the area. This focused rest may ease your symptoms while you and your care team plan your next steps.

Physical therapy is another key part of nonsurgical care. A physical therapist can guide you through exercises that keep the muscles around the joint strong. This helps protect the joint and can make daily movement easier.

One small study in people with sickle cell found no clear added benefit from combining physical therapy with core decompression, a surgery described below, compared with physical therapy alone. More research is needed.

Considering Procedures To Preserve or Replace the Joint

If nonsurgical care doesn’t provide enough relief, or if AVN has progressed further, your doctor may recommend a procedure. These generally fall into a few types:

• Bone grafting — Removing damaged bone tissue and replacing it with healthy bone from another part of your body or from a donor
• Core decompression — Drilling small holes into the affected bone to relieve pressure and improve blood flow, sometimes paired with a bone graft
• Joint replacement — Replacing the damaged joint with an artificial one, usually for more advanced cases

Treatment isn’t one-size-fits-all. What works best depends on your stage of AVN, the joint affected, and your overall health. Many people manage well with a mix of these approaches over time — talk through the options with your care team to find what will work best for you.

Talking to Your Doctor About Joint Pain

With sickle cell disease, it can be hard to know when joint pain is part of a typical crisis and when something else may be going on. Bringing up pain again can feel frustrating, especially if past concerns have been minimized or treated as “just another crisis.” But if pain lingers after a crisis, keeps returning in the same joint, or comes with stiffness or changes in how you move, it’s worth telling your healthcare team.

It may help to keep track of where the pain is, how long it lasts, and whether it feels different from your usual pain. Sharing those details can help your doctor decide whether you need imaging or other evaluation for complications such as avascular necrosis.

Getting unexplained joint pain checked early can help protect your mobility and give you more treatment options if AVN is found.