Women and Aortic Stenosis

Aortic stenosis can often look – and feel – different in women. As a result, it may go unnoticed until later stages, and delay care. Many women are busy juggling responsibilities and putting others first. But it’s important to tune in and speak up if something doesn’t feel right, especially as we get older.

Earlier diagnosis means:

• Feeling better and staying active
• Living longer and protecting your future heart health

So be honest with your care team if you’re having any symptoms. If you’ve been diagnosed with aortic stenosis, ask questions to make sure you get the care you need.

Women often share similar stories when looking back on their diagnosis with aortic stenosis. For example, they say they:

• Dismissed or downplayed symptoms like fatigue or shortness of breath – often making excuses such as they’re doing too much, out of shape or just getting older.
• Kept going despite warning signs and put family needs first – even when they sensed something didn’t feel right.
• Recalled having a heart murmur but never knew it could signal heart troubles or valve disease.
• Struggled to explain to others why they can’t keep up like they used to. 

Diagnosing Aortic Stenosis in Women

Research also points to factors that might make it harder to detect aortic stenosis in women.

 Studies show that women tend to:

• Wait longer to seek care.
• Slowly adjust their routines (avoiding stairs, cutting back on activity, etc.) without realizing symptoms are worsening and may be behind these changes.
• Have smaller hearts and aortic valves, which can make blood flow and pressure numbers look deceptively “normal” even when the valve is narrowed.  
• Have more scarring (fibrosis) rather than calcium buildup, which is more commonly used to help diagnose aortic stenosis and more frequent in men.

These differences can lead to mismatch or gap between what women are feeling (often more subtle symptoms to men’s) and what appears on an echocardiogram. Current definitions for “severe” aortic stenosis may underestimate the disease in women. As a result, many women aren’t diagnosed until “their symptoms worsen and their disease becomes more severe.” 

Any earlier radiation treatment to the chest, breast surgery and implants can also make it harder to interpret imaging.

All of this can mean that women aren’t diagnosed until their disease is further along, which delays seeing a valve specialist and getting the right treatment. 

Signs and Symptoms

As aortic stenosis worsens, the heart has to pump with more force to push oxygen-rich blood out to the body through the smaller opening. As there is more narrowing, blood flow is limited, causing symptoms.

Interestingly, women are less likely to have chest pain or fainting episodes, which are more obvious red flags of heart valve trouble. 

Instead, women often notice: 

• Feeling more tired than usual
• Shortness of breath, especially with activity
• Trouble staying active or exercising
• Lightheadedness or dizziness
• Swelling in the legs/ankles or belly (at later stages)

A Heart Murmur Can Be a Warning Sign

If you have any of these symptoms and have been told you have a heart murmur, don’t wait. Talk to your doctor about getting checked for aortic stenosis.

 A murmur is an extra noise or “whooshing” sound when blood moves through your heart. It can be an early sign of aortic stenosis. While a murmur isn’t always dangerous, it does need to be monitored. 

Bottom line: Delayed diagnosis means less timely valve replacement, if needed, and worse outcomes. 

What You Can Do

• Listen to your body – don’t downplay symptoms like fatigue, shortness of breath, or slowing down. Many women notice they just can’t do the same level of activity without having to rest or take a break.
• Notice small changes in what you can do – trust your gut and if something feels not quite right be sure to talk with your care team.
• Advocate for yourself.
  • Ask questions.
  • Share specific examples of activities that seem harder.
  • If you’ve been told that you have a heart murmur, be sure to ask about how to best monitor it. 
• Get the right tests and push for others if needed – get regular echocardiograms to see how your valve is working. If your echocardiogram results seem OK, but you know you aren’t feeling yourself, ask if a stress test or other imaging tests could be helpful.
• Share information about your health history to better assess your risk of valve disease – for example, a family history of valve disease, bicuspid aortic valve disease (when your aortic valve only has two leaflets instead of three), high Lp(a), previous chest radiation, or breast surgery/implants.
• Learn about treatment options and when you might need to consider surgery or a procedure to fix your valve.
• Make heart-healthy choices – eating nutritious foods, not smoking or drinking alcohol, managing stress, stay physically active based recommendations from your care team.
• Manage blood pressure and other heart risk factors. 
• Mind your mental health. Many women share that it’s helpful to find ways to stay positive. Talking with other women with aortic stenosis is helpful too.

Treatment for Severe Aortic Stenosis

Many people are followed for a while. But once the narrowing of the valve severe, you may need to have your valve replaced. 

There are two options that have been proven to help [eligible] patients live longer and feel better: 

• TAVR (Transcatheter Aortic Valve Replacement) – a less invasive procedure that doesn’t involve opening the chest and also means quicker recovery. Research shows that women, including those in their 70s and 80s, have good outcomes with TAVR. Yet women tend to referred less often to TAVR compared with men. 
• Surgical Aortic Valve Replacement (SAVR) – is done via open-heart surgery. This remains a better option for some people, depending on age, anatomy and other health factors.

It’s important to meet with a valve specialist who can explain whether TAVR, SAVR or both are options for you. Together, you can decide what treatment is best for you. Use this decision aid to help think through your decision if you are deciding between the two options. For more information, learn more about aortic stenosis.

Questions to Ask Your Care Team

It’s helpful to know what to ask at different points on your journey. Below are some questions other women and experts shared in case they are helpful.

For symptoms

• I’ve been told that I have a heart murmur. What does that mean, and should I get an echocardiogram?
• I’m tiring more easily or having a harder time doing activities I could do six months ago. Could this be related to my heart? 
• Do certain symptoms show up differently in women?
• Do I need a stress test in addition to an echo? I’ve heard that women’s test may not show the extent of narrowing.

Understanding my diagnosis

• What stage is my aortic stenosis and how do we know if it’s progressing?
• How often should I have an echo or other tests? Can a stress test help?

What else can I do

• How can I keep my valve from getting worse?
• Should I get my Lp(a) checked? High Lp(a) is linked to a greater chance of heart valve disease.
• What changes in how I feel should prompt me to call you in between visits? Are there specific symptoms I should watch for?

Treatments

• What are my treatment options now, and as my valve gets worse?
• At what point should I see a valve specialist? Is there someone you recommend? 

If a valve procedure is being considered

• Which procedure is best for me? What are the benefits and risks of each?
• How do we pick the valve size that’s right for me?
• What’s the plan for managing my valve over my lifetime?
• What is the lifespan of this valve? How will we monitor it and know when future procedures are needed?

Mental and emotional well-being

• How can I explain the disease to others so they understand why I’m not able to do the things I used to? It’s not that I’m being difficult or that I’m not interested. I just get very tired.
• Are there resources or support groups for women with aortic stenosis?
• What are some easy ways I can lower stress so it doesn’t affect my heart and health?