Four years ago, I had increased bladder pressure caused by vaginal vault prolapse. Because of my extensive pelvic history, my local gynecologist didn’t want to treat it and sent me to a specialist in a big city an hour away. That specialist insisted I couldn’t possibly be feeling pain or increased symptoms and referred me to a pain clinic. I left that appointment in frustrated tears. But, I didn’t stop there. Instead, I reached out to a urologist in a different state who I had seen a few times to treat my IC. He referred me to a colleague who listened to me, tried various treatment options and eventually did surgery to help me. After my recovery, I felt significantly better. I was glad that I advocated for myself to get treatment I clearly needed.
However, getting to the point of actually advocating for myself and not just blindly trusting a doctor to know what’s best for my body has taken time and practice. I’m a quiet person who doesn’t like conflict. I have great anxiety about getting in trouble with authority figures. But through some practice, I’ve learned that if I don’t advocate for my health and my body then I’m not going to get the best help. My husband continues to encourage me to not give up and settle for unacceptable answers.
While nobody wants to be a jerk, we do have to learn how to respectfully stand up for ourselves and really become our own health advocate, especially as we navigate a health condition that doesn’t have a one-size-fits-all treatment regiment.
1. Communication is important.
The key to any good relationship is communication, and that remains true in a doctor/patient relationship as well. This means being completely honest with your doctor about your pertinent health history, even the embarrassing issues. You also want to let your doctor know if use any recreational drug use or take any herbal supplements.(1)
Along with that, come prepared with questions you want to get answers to. Writing down what you want to ask or talk about with your doctor is a good idea since it’s easy to get distracted or overwhelmed during an appointment and forget something.(2) You can even hand the paper to the doctor when he or she enters the room to help move the appointment in the direction you want it to go.
While your paper can be as simple as a list of questions you have, you can also get more detailed and include your goal for the appointment, your symptoms, concerns you have, questions you have, related numbers (such as a voiding log) and any research you might want to bring up.(2)
2. Understand your insurance coverage and how it impacts your care.
Insurance plays a big role in how your doctor treats your IC and what you are able to do or not. For example, aside from Elmiron, oral medications used to treat IC are off-label, meaning they are approved for other conditions. Some medication and procedures are easily approved by insurance and others aren’t. You definitely don’t want to get hit with a big medical bill you weren’t expecting. Your doctor’s office can usually help you with insurance-related questions, but it’s up to you to really know the information. If your doctor is scheduling a procedure for you, get the medical code for the procedure from his office then call your insurance company and check your coverage for that specific code. (I once didn’t do this and instead of having a $20 co-pay, I ended up with a bill for $500. Ouch!)
3. Do your own research.
Of course your doctor should give you information about IC, but he or she only has a certain amount of time with you. Do research ahead of time. Look for reputable sources. While chatting with other patients can be helpful and give you ideas on treatments, actually research the treatments so you are well informed.
But, remember that you are NOT a doctor. Doing your own research can help you better understand IC and even what to expect, but your doctor has years of training you haven’t had. Bring any information you’ve found online and want to discuss with your doctor to you appointment and present it respectfully to him or her and ask for their opinion. Just as you want and deserve to be treated with respect, so does your doctor.
Print out the pertinent parts of research you specifically want to discuss and prioritize it so that if you don’t have time to discuss everything, you’ve at least been able to discuss what is most important to you.(3)
4. Consider taking someone with you.
Doctor’s appointments can be overwhelming. Sometimes you are left reeling from a physical exam that was uncomfortable and are sidetracked. Sometimes you are overwhelmed by your thoughts as the doctor is telling you things. It can be easy to get sidetracked from what you want to discuss or even make sure later you accurately remember what the doctor told you. For these reasons, taking along a trust friend or family member can be helpful. You can even ask them to take notes for you that you can reference later.(4)
5. Ask questions when you don’t understand something.
If your doctor is suggesting a diagnostic test, procedure or medication and hasn’t explained why, ask him or her. Asking for clarification is sometimes necessary so you understand what is going on with your treatment and is OK.(4) This is especially true for IC patients. For example, some IC patients have improved symptoms when taking an anti-histamine, which is usually used for treating allergies. Taking it for bladder symptoms seems odd, but your doctor should be willing and able to explain to you why it could be worth trying for you.
6. Maintain your own records.
Maintaining your own records can be helpful when you are seeing multiple doctors either for different conditions or the same one. Remember my example at the beginning about the specialist I went to out of state to get help? I left the hospital after my surgery with copies of my records that I then took with me to my local gynecologist and urologist so they had all my records together. I kept copies for myself as well, just in case. Sometimes records can get lost or misplaced in transferring from one office to another; having your own copies means that when you go to your appointment you can provide missing records to give your doctor a more complete health history.(5)
7. Do your part to feel better.
Advocating for yourself means that you are committed to doing your part to feel better. Though there are some questionable “cures” for IC on the internet, there are quite a few scientifically proven self-help treatments for patients such as monitoring our diet and managing our anxiety. Pay attention to the self-help treatments your doctor recommends and discuss with him or her anything you are unsure about. If you decide to try a supplement, talk about it with your doctor before taking it.
8. Don’t have blind trust in your doctor.
Though you doctor is educated and even an expert on body functions, you remain an expert on your own body. Don’t be afraid to ask for clarification or even a second opinion if you don’t feel like your concerns and needs are being resolved well. The old way of thinking that health practitioners are completely in charge our bodies and healthcare no longer holds true. The truth is you do have control and must take it to ensure your quality of life is the best it can be.(2)
9. Know the follow-up plan.
Treating IC is a trial-and-error process. As you are working your way through new treatments with your doctor, feel free to ask questions about where to go from here if the new treatment doesn’t work. Ask other questions like how long should a new medication take to start giving you some relief. What are some symptoms that mean you need to call back before your next appointment? How long after a procedure should you start feeling better?(4)
10. Don’t give up.
Going to a doctor’s appointment for a chronic and painful condition like IC can be discouraging. Sometimes appointments make you come face-to-face with how much your condition is impacting your life and changing the way you live. It hurts and is hard. But, you are still alive and you deserve the very best quality of life that you can have. You are important! Take whatever steps you need to advocate for yourself until you are content that you are living your best life. Don’t give up until you get there! And if your symptoms worsen, go through the process again. It can be frustrating, overwhelming and downright exhausting, but you owe it to yourself and your loved ones to keep trying.
- Becker’s Hospital Review. 8 Ways Patients Can Advocate for Themselves.
- Chastain R. The Complete Guide to Becoming Your Own Medical Advocate. Medium. Aug. 27, 2018.
- Young JB. Doing Your Own Medical Research Before Talking to Your Doctor. Dignity Health. June 11, 2015.
- Mcilnay K. Ten Ways to Advocate for Yourself at the Doctor’s Office. Together Patient Advocates Blog. Feb. 2, 2017.
- Renter E. Six Ways to Be Your Own Health Advocate. U.S. News and World Report. Feb. 2, 2015.