Health Awareness | Patient Advocacy | Women's Health

Be Your Own Health Advocate: When the Answers Don't Add Up, Keep Asking Questions

You know your body. You deserve answers. And you have every right to ask questions about your healthcare.

Recently, someone very close to me, a member of my family, was diagnosed with ovarian cancer. Her experience has weighed heavily on my heart, not only because of the diagnosis itself, but because of everything that happened before it.

For a long time, she experienced ongoing symptoms. She sought medical care, visited different doctors, and tried to understand what was happening. Yet the symptoms continued, the appointments came and went, and the answers she needed never seemed to come together. She felt passed from one healthcare professional to another without anyone fully connecting the pieces or following through.

Now, she wants other women to know what she wishes she had known. She wants them to recognize symptoms, ask questions, and understand what testing may be available. Most of all, she wants her experience to help someone else.

Her story is the reason I'm writing this article. But the message goes far beyond ovarian cancer.

Every one of us needs to learn how to be our own health advocate.

We place a tremendous amount of trust in our healthcare professionals, and rightly so. Most enter the profession because they genuinely want to help people. But doctors are human. They work within complicated systems, manage enormous amounts of information, and sometimes have limited time with each patient. Symptoms can overlap with many conditions, diagnoses can be difficult, and important details can be missed.

That doesn't mean we should distrust our doctors. It means we need to become active participants in our healthcare rather than assuming someone else will always connect every piece of the puzzle.

When Something Doesn't Feel Right, Pay Attention

How many times have we dismissed a symptom because we assumed it was stress, aging, menopause, something we ate, or simply part of getting older?

Most everyday symptoms are not signs of serious illness. But when something is new, persistent, worsening, or unusual for you, it deserves attention.

One of the challenges in healthcare is that a single symptom may have many possible explanations. Fatigue, abdominal discomfort, dizziness, digestive changes, or headaches can occur for numerous reasons. A healthcare professional may reasonably begin with the most common explanations.

But what happens when treatment doesn't help? What happens when the symptoms continue, the tests are normal, and you still don't feel right?

That's when follow-up becomes especially important.

A normal test result does not necessarily mean that every possible explanation has been ruled out. It means that particular test did not identify the condition or abnormality it was designed to detect.

Rather than simply accepting that nothing is wrong, ask what should happen next if your symptoms continue.

Keep a Health Journal: The Details Matter

One of the simplest and most valuable things you can do is keep a record of your symptoms.

Think about what happens during a typical medical appointment. You may have waited weeks to be seen, you're trying to explain several concerns in a limited amount of time, and suddenly you can't remember exactly when a symptom began or how frequently it occurs.

Doctors hear about symptoms every day. The more clearly you can describe your experience, the easier it may be for them to recognize patterns, evaluate changes, and determine appropriate next steps.

Your journal doesn't have to be complicated. A notebook or a note on your phone is enough.

• Record when each symptom began.
• Note how often it occurs and how long it lasts.
• Describe its severity and whether it is getting better or worse.
• Write down anything that seems to trigger or relieve it.
• Note changes in appetite, sleep, digestion, energy, or daily activities.
• Record medications, treatments, tests, and what happened afterward.
• Keep track of which healthcare professional you saw and what follow-up was recommended.

For example, saying "I've been bloated lately" provides less information than explaining that you've experienced unusual abdominal bloating nearly every day for six weeks, along with feeling full after eating small meals.

That kind of detail can help guide a more focused medical evaluation.

Bring Someone With You to Medical Appointments

I cannot emphasize this enough. Whenever possible, especially when dealing with ongoing symptoms, a complicated diagnosis, or important treatment decisions, consider bringing a trusted friend or family member to your appointment.

It's amazing how quickly we can forget the questions we intended to ask once we're sitting in an examination room. We may feel nervous, rushed, overwhelmed, or relieved just to have someone listening.

A second person can help you remember your questions, take notes, listen to explanations, and ask for clarification when something doesn't make sense.

Before the appointment, sit down together and write out your concerns. Decide which questions are most important and what information you want to leave with.

Your companion is not there to speak over you or make decisions for you. They're there to support you and help ensure that important information doesn't get lost in the conversation.

The Agency for Healthcare Research and Quality encourages patients to consider involving trusted family members or friends in medical visits for these very reasons.

It's Okay to Question Your Doctor

Some people hesitate to question their healthcare professional because they don't want to appear difficult, disrespectful, or as though they are challenging someone's medical education.

But asking questions is not disrespectful. It's part of good healthcare.

You can respect your doctor's expertise while still asking for explanations, discussing alternatives, and expressing concern when symptoms remain unresolved.

Here are questions worth keeping in your phone or health journal:

• What conditions could be causing these symptoms?
• What have we ruled out, and what haven't we ruled out?
• Why are you recommending this test or treatment?
• Is there another test that might help us understand what's happening?
• What are the risks of testing compared with waiting?
• If my results are normal but my symptoms continue, what is our next step?
• Would seeing a specialist be appropriate?
• When should I follow up, and what changes should prompt me to call sooner?

One of my favorite questions is simple: "What is our plan if this doesn't work?"

That question turns an appointment into an ongoing conversation rather than a single visit with no clear next step.

When Should You Push for Additional Testing?

There is an important difference between advocating for appropriate testing and assuming that every available test should be ordered.

Medical tests are valuable tools, but no test is perfect. Some can miss disease, some can identify abnormalities that are harmless, and others can lead to unnecessary follow-up procedures.

The right test depends on your symptoms, medical history, physical examination, risk factors, and what your healthcare professional is trying to investigate.

When symptoms continue without a clear explanation, it is reasonable to ask whether additional blood work, imaging, specialist evaluation, or other diagnostic testing could be helpful.

For example, depending on the circumstances, a clinician might consider a complete blood count to investigate anemia or certain blood abnormalities, thyroid testing when symptoms suggest a thyroid condition, or ultrasound or other imaging when symptoms point toward a particular organ or body system.

These tests are not universally appropriate, and none should be considered a routine answer to every unexplained symptom. But patients deserve to understand why a test is recommended, why it may not be necessary, and what alternatives exist.

The goal isn't more testing for everyone. It's the right testing for the right person, at the right time.

Ovarian Cancer: An Important Example of Why Testing Decisions Matter

My family member's experience has brought particular attention to ovarian cancer and the CA-125 blood test. She strongly believes women should be more aware of this test, and I understand why. When someone has experienced a delayed diagnosis, it's natural to wonder whether an earlier test might have changed the outcome.

Ovarian cancer can cause symptoms such as persistent bloating, pelvic or abdominal discomfort, feeling full quickly, and changes in urination. Because these symptoms are common to many other conditions, they may not immediately suggest ovarian cancer.

CA-125 is a blood test that measures a protein sometimes elevated in women with ovarian cancer. It can be helpful during certain diagnostic evaluations and in monitoring treatment.

However, a normal CA-125 result does not rule out ovarian cancer, and an elevated result does not necessarily mean cancer is present. Noncancerous conditions, including endometriosis and fibroids, can also raise CA-125 levels.

Large studies have not shown that routinely screening average-risk women without symptoms using CA-125 testing or transvaginal ultrasound reduces ovarian cancer deaths. These tests can also produce false-positive results that lead to unnecessary surgery, sometimes including removal of an ovary, with risks such as bleeding, infection, or injury to surrounding organs.

For these reasons, the U.S. Preventive Services Task Force recommends against routine ovarian cancer screening for women without symptoms who are not known to have a high-risk hereditary cancer syndrome.

But screening and investigating symptoms are two very different things.

Women experiencing persistent or concerning symptoms may need a diagnostic evaluation that could include a pelvic examination, transvaginal ultrasound, CA-125 testing, or other tests depending on their individual circumstances. Women with significant family cancer histories may also benefit from genetic counseling.

The lesson is not that every woman should request CA-125 testing. The lesson is that persistent symptoms deserve proper evaluation, and patients should understand what tests may be appropriate and why.

When Insurance Gets Between You and Your Healthcare

Another frustrating reality of modern healthcare is that even when a patient and healthcare professional agree that testing is appropriate, insurance coverage can become an obstacle.

Insurance companies often use medical necessity criteria to determine whether a test, imaging study, specialist visit, or procedure will be covered. Some services require prior authorization, meaning the insurer must approve coverage before the service is provided.

There is an important distinction here. A test may not be covered as routine preventive screening but may be covered when medically appropriate to investigate documented symptoms. Coverage depends on the individual insurance plan, the clinical circumstances, and applicable policies.

Sometimes a denial occurs because the insurer considers a test unnecessary under its criteria. Other times, additional clinical documentation, a different billing code that accurately reflects the patient's condition, or a prior authorization request may be needed.

And sometimes the healthcare professional may not believe a requested test is clinically indicated. That is a medical decision worth discussing, rather than automatically assuming the insurance company is responsible.

Unfortunately, these distinctions can be confusing for patients, especially when they are already worried about their health.

What can you do when a test is denied?

Start by finding out exactly why coverage was denied. Ask whether the issue involves medical necessity, prior authorization, network restrictions, or a service excluded by your plan.

If your healthcare professional believes the test is necessary, ask whether the office can provide additional documentation, request reconsideration, or conduct a peer-to-peer review with the insurer when available.

Patients with many types of health insurance also have formal appeal rights. Depending on the plan and denial, these may include an internal appeal and an independent external review. Medicare and other coverage programs have their own appeal procedures.

Keep copies of your medical records, test requests, denial letters, and conversations with the insurance company. Ask for the denial in writing and find out the applicable deadlines.

When a medically recommended test is denied, don't assume that the initial decision is necessarily the final answer.

At the same time, remember that insurance coverage and medical appropriateness are separate questions. A test isn't automatically beneficial simply because insurance covers it, and a denial doesn't always mean a test lacks medical value.

What Tests Might You Be Missing?

It's understandable to wonder whether important health conditions are being overlooked because certain tests aren't part of routine annual blood work.

The answer is more complicated than simply adding more tests to every checkup.

Routine preventive screening recommendations are based on research about which tests are likely to improve health outcomes in particular groups of people. Testing someone without symptoms is different from investigating symptoms that may suggest a medical condition.

Depending on individual circumstances, additional testing might include targeted laboratory studies for anemia, iron deficiency, thyroid disorders, vitamin deficiencies, inflammatory conditions, or other concerns. Imaging or specialist evaluation may also be appropriate.

For example, ferritin testing can help evaluate suspected iron deficiency, thyroid-stimulating hormone testing may help investigate certain thyroid-related symptoms, and vitamin B12 testing can be useful when symptoms or risk factors suggest a deficiency.

But ordering these tests routinely for everyone is not necessarily beneficial. Some tests produce misleading results when used in people with a very low likelihood of disease.

Insurance coverage also varies. A test may be covered for a documented medical indication but not as part of a general wellness panel. Some specialized tests may lack sufficient evidence of clinical benefit for routine use.

Rather than asking for every available test, ask your healthcare professional:

"Based on my symptoms and health history, are there any conditions we haven't adequately investigated, and would additional testing help us evaluate them?"

That question opens the door to a more meaningful conversation about your health.

When It's Time for a Second Opinion

Not every medical appointment will end with a clear diagnosis. Sometimes conditions take time to identify, symptoms evolve, and a period of observation is medically reasonable.

But you should leave an appointment understanding what your healthcare professional thinks may be happening, what has been ruled out, what remains uncertain, and when you should return if things don't improve.

If you repeatedly feel dismissed, cannot get reasonable questions answered, or find that persistent symptoms are not being reassessed, consider seeking a second opinion.

Another healthcare professional may review your history from a different perspective, recognize a pattern, or recommend a different approach.

A second opinion doesn't necessarily mean your original doctor was wrong. It means you're taking an active role in understanding your health.

And if you consistently feel that your concerns aren't being heard, it may be time to find a healthcare professional with whom you can build a more collaborative relationship.

A Simple Plan for Becoming Your Own Health Advocate

You don't need a medical degree to participate meaningfully in your healthcare. You need information, preparation, and the confidence to ask questions.

1. Pay attention to changes. Don't ignore symptoms that are new, persistent, or worsening.
2. Keep a health journal. Document symptoms, appointments, test results, and follow-up recommendations.
3. Prepare your questions. Write down your most important concerns before every appointment.
4. Bring someone you trust. A second set of ears can make an enormous difference.
5. Ask for explanations. Understand what a test can reveal, its limitations, and why it is or isn't recommended.
6. Know your insurance rights. Ask about medical necessity, prior authorization, and appeals when coverage is denied.
7. Follow through. Make sure you receive test results and understand the next steps.
8. Seek another opinion when necessary. You deserve a healthcare relationship built on communication and respect.

Final Thoughts...

Writing this article is especially meaningful to me because of what my family member has experienced. I cannot change what happened along her journey to a diagnosis, but I can help share the message she wants other people to hear.

And that message is simple: please don't ignore your body, and please don't be afraid to speak up.

I have tremendous respect for the healthcare professionals who dedicate their lives to helping others. But I also believe that we have a responsibility to participate in our own care. We cannot assume that every symptom will be connected, every question will be asked, or every follow-up will happen without our involvement.

If something doesn't make sense, ask why. If your symptoms continue, ask what comes next. If a test isn't recommended, ask for the reasoning. If your insurance denies a medically necessary service, find out what options you have. And if you don't feel heard, consider another opinion.

Advocating for yourself doesn't mean being confrontational. It means being informed, engaged, and willing to have honest conversations about your health.

Sometimes you may need to ask the same question again. Sometimes you may need to bring someone with you. And sometimes you may need to find a different healthcare professional who will take the time to listen.

You are not being difficult because you want to understand what is happening with your body. You are being an active participant in your own healthcare.

My hope is that my family member's experience will encourage someone else to recognize a symptom, make an appointment, ask an important question, or follow up when an answer doesn't feel complete.

Because your health matters. Your voice matters. And you deserve to be heard.

Hugs,
Wendy

Wendy Francis, NBC-HWC
Board-Certified Health Coach
HealthCoachWendy.com

Sources and Further Reading

1. Agency for Healthcare Research and Quality (AHRQ). Be More Engaged in Your Healthcare.
2. Agency for Healthcare Research and Quality (AHRQ). Include Family and Friends in Healthcare Visits.
3. U.S. Preventive Services Task Force. Ovarian Cancer: Screening Recommendation.
4. Centers for Disease Control and Prevention. Symptoms of Ovarian Cancer.
5. HealthCare.gov. How to Appeal an Insurance Company Decision.
6. HealthCare.gov. External Review of Insurance Denials.