People with primary biliary cholangitis (PBC) aren’t strangers to discomfort. PBC pain can affect almost all areas of your body — but liver pain is a specific sensation that some people with PBC experience.

Unfortunately, liver pain is one of the symptoms of PBC that’s sometimes dismissed by healthcare professionals. “Feeling the pain badly in the liver area. Docs all told me there is no pain. Well, it’s in my body, not yours, so how can you say no pain?” one member asked.

Another member said, “Doctors say the liver has no pain receptors, but there definitely is pain! I’m sure those that say this don’t have PBC or have never had a liver biopsy!”

If you’re experiencing liver pain due to PBC, here are six tips that may help.

Liver Pain and PBC

PBC (formerly called primary biliary cirrhosis) is a type of autoimmune disease — a condition where the immune system attacks healthy cells. In PBC, the bile ducts of the liver are the target of the immune system. These attacks cause inflammation of liver tissue and, eventually, liver damage. Cirrhosis (permanent scarring of the liver) may even result in liver failure and require a liver transplant.

Because there are no nerves in the liver, the discomfort you feel in this area is likely due to damage or inflammation of nearby tissues. Other types of pain can be due to nerve damage, or may occur without any noticeable tissue or nerve damage. In people with PBC, liver pain may be related to:

• Liver inflammation
• Ascites (bloating of the abdomen due to fluid)
• Indentation or flattening of the outer liver
• Splenomegaly (enlarged spleen)

So, what does liver pain feel like? PBC can cause feelings of pain or discomfort in the upper right part of the abdomen where the liver is located. Pain may be dull or throbbing.

Several myPBCteam members have described their liver pain as “stabbing” and “aching.” Some have also noted how tender this area is: “I get pain, if I’m cooking and my liver touches the counter.”

People with liver disease may also notice pain in their shoulder, neck, large joints, or backside. This may occur because pain can also be referred elsewhere, meaning it occurs in a different body part than it started.

One myPBCteam member asked, “Do any of you who get the upper-right quadrant pain experience it in the back, too? Same location as the front, just in my back.”

Strategies for Easing Liver Pain

Chronic pain can do more than cause discomfort — it can interfere with your daily life and overall well-being. Taking steps to manage your PBC may help reduce symptoms, including liver pain. Here are a few strategies that might ease discomfort and improve how you feel day to day.

1. Eat a Healthy Diet

Eating a balanced diet is an important part of a healthy lifestyle. If you have PBC, eating a healthy diet can also help you to maintain your existing liver function and prevent complications.

Opt for whole grains, fruits, and vegetables to help slow disease progression. Aim for a diet that’s nutritious — full of healthy vitamins and minerals. Eating foods high in calcium and vitamin D can help to reduce your risk of developing osteoporosis (bone thinning), which affects about 30 percent of people with PBC and may cause bone pain. Try eating smaller meals more frequently to reduce abdominal discomfort related to a full stomach.

Your doctor can help you find a food plan that’s right for you or refer you to a dietitian. Your provider will want to make sure that you’re getting all the nutrients you need. They may recommend you take certain supplements or fat-soluble vitamins (vitamins A, D, E, or K).

2. Avoid Alcohol and Quit Smoking

Since the liver is responsible for processing alcohol, people with liver disease should limit their alcohol intake. The extra burden of drinking alcohol can cause further liver damage in people with PBC. Because of this, it’s generally recommended that people with PBC avoid or limit alcohol intake. People living with PBC and cirrhosis should avoid alcohol entirely.

Smoking is another habit to avoid if you have PBC. Research suggests it may worsen liver damage and increase health risks for people with PBC. If you currently smoke, try to quit. Your doctor can help you figure out a strategy for quitting smoking. If you’re not already smoking, it’s best not to start.

3. Avoid Processed, Raw, and Undercooked Foods

In addition to filtering toxins, the liver processes nutrients — carbohydrates, fats, and protein — from food. The liver also works with the gallbladder to break down the fat in the food you eat. Limiting processed and fatty foods can help to take stress off of your liver.

Processed foods are also typically high in sodium (salt), which can contribute to edema (swelling caused by fluid buildup). Reducing sodium can help minimize fluid retention and may be especially helpful if you're managing ascites.

You can also talk to your doctor about diuretics (water pills), as they can help to limit fluid buildup as well.

It’s also important to avoid raw or undercooked food and drinks due to the risk of infection. Bacteria and viruses found in food can be particularly dangerous for people with PBC, sometimes leading to severe infections. In general, try to avoid things like unpasteurized milk and other beverages, as well as raw or undercooked fish, shellfish, and meats.

4. Get Some Exercise

Engaging in regular physical activity is an essential part of a healthy lifestyle and it can help you to maintain a healthy weight. Getting to a healthy weight is one way to help to lessen PBC symptoms, including pain and discomfort.

In general, try to exercise most days of the week. Even walking for half an hour a day can be beneficial to your health. Try to find a type of physical activity that you enjoy and stick with it. Regular exercise can also help you to preserve bone density. Weight-bearing activities in particular can help to reduce your risk of osteoporosis.

5. Cuddle Up With a Heating Pad

A heating pad is an at-home treatment option that can be helpful for liver pain. Heating pads can relax muscles and aid in the movement of gas. They may be particularly helpful if trapped gas is contributing to discomfort. When using a heating pad for abdominal pain, stick to 15 to 20 minutes of heat at a time.

6. Take Your Prescribed Medications

To help slow disease progression, it’s important to take all the medicines prescribed to you by your doctor. Discuss any medication side effects with your doctor.

Your provider may also recommend you take other medications for PBC complications. These may include medications to lower cholesterol, manage bone loss, and treat portal vein hypertension (high blood pressure in the portal vein).

Talk With Your Doctor

Talk to your healthcare provider if you’re experiencing ongoing pain. Pain or discomfort that doesn’t improve with healthy lifestyle changes may be a sign of PBC disease progression or complications. For that reason, it’s important to be evaluated by a medical professional. Working with your doctor to address your PBC symptoms can lead to better disease management and slower progression.

Find Your Team

On myPBCteam, the social network for people with primary biliary cholangitis and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with primary biliary cholangitis.

Have you found ways to ease your liver pain? Do you have any tips for others with PBC who have liver pain? Share your experiences in the comments below, or start a conversation by posting on your Activities page.