Chances are by the time you get your diagnosis of IC, you have already seen a couple of doctors. Considering finding yet another doctor seems like too much, but sometimes you must.
When I was 13, my local pediatrician sent me to a local urologist because I kept having UTI symptoms without an infection. The local urologist first asked if I could be pregnant. (I hadn’t even kissed a boy!) He then told me I’d need to have medicine put in my bladder weekly, and I’d basically become homebound. So my parents decided to take me to a children’s hospital an hour away.
The pediatric urologist told me I just wasn’t urinating correctly. Again, my parents decided that wasn’t an acceptable answer, so my mom tracked down the one IC specialist in our state and took me to see him. He gave me an anti-spasmodic bladder medication that greatly improved my symptoms and allowed me to continue my middle school life much like my friends. Getting multiple opinions to get the right treatment was definitely the correct choice.
Unfortunately, that isn’t even all of my stories of needing a second (or third or fourth!) opinion. And my stories aren’t unique. Many IC patients have similar stories to share. Knowing when you need a second opinion and how to go about getting it can vastly improve your quality of life.
That was the case for IC patient Debbie Harwell who ran into issues when her original urologist retired. The urologist who replaced him didn’t believe she could have IC and insisted on taking a urine sample through a catheter to show an undiagnosed UTI. Harwell was in intense pain throughout the procedure and not at all surprised when the results came back as negative for an infection. She decided it was time to move on.
“Changing doctors was the best thing I ever did,” Harwell said.
Why you might need a second opinion
Your doctor isn’t helpful
One of the biggest reasons you might need a second opinion is if your doctor isn’t helpful. While IC isn’t curable, there are treatment options and protocols that doctors can follow to help you get some relief. If that isn’t happening, getting a second opinion is a good idea.
Jordan Boggs said the first doctor she saw for her bladder pain diagnosed her with Painful Bladder Syndrome, but told her since nobody dies from it, there is no research being done about it and no treatments for it. He gave her three months of antibiotics and sent her on her way.
Later she went to urgent care for what she thought could be a UTI and the doctor there told her that she sounded like she had IC and referred her to a doctor who specializes in IC. When she saw that doctor, everything changed.
“I got a diagnosis for IC,” Boggs said. “He actually gave me hope and treatment options in the form of diet management, medication and installations. I finally began to feel like I might be able to live with this. If I had taken that first doctor’s word for gospel, I don’t think I would have been able to keep going. I don’t know where I would be.”
Your doctor is quick to recommend invasive treatment
If your urologist is recommending surgery or invasive procedures without explaining other options to you or without trying other treatments first, a second opinion is a good idea.(1) Just because a doctor suggests a procedure doesn’t mean you have to agree to it. Getting a second opinion can help you get more information and make the best treatment decision for your body.(1)
Your intuition says something isn’t right
Even if your doctor is providing excellent care, if you feel that something isn’t right then it might be time to get a second opinion. Trusting your medical provider is important. Talk with friends, do your own research and decide for yourself whether you are comfortable enough continuing to see this doctor or whether a second opinion would help you be able to move forward.(1)
Your research and your doctor don’t match
This one can be a bit challenging, because IC isn’t treated often by many urologists. Many urologists specialize more in men’s health and don’t stay as up-to-date on the latest IC research. But if your doctor has very outdated protocols for IC and isn’t at all open to any new research or treatments you suggest, it is time to move on.(2) Things like potassium testing and straight DMSO are red flags for a urologist who hasn’t updated his treatment for IC in a decade or more. You certainly need to have realistic expectations that not every urologist is going to be on the cutting-edge of IC treatment, but you also want to look for a urologist who is not incredibly behind.
Your doctor only recommends one specific treatment
IC patients and their symptoms are all different, which means that treatments are different for different patients. What works for me might not work for you and vice versa. If you’re seeing a doctor who is only pushing one specific treatment and nothing else, then it’s time to seek a second opinion.(2) A good doctor will provide you with multiple options and discuss their pros and cons with you so you can work together on the best treatment plan.(2) Because IC is a chronic condition, being able to partner with your doctor is especially important.
You want to confirm your diagnosis
A second opinion can help with confirming your diagnosis, especially since IC doesn’t have an exact test to determine whether a patient has it. In fact, a 2017 study from the Mayo Clinic found that 88% of patients were given a different diagnosis when they went for a second opinion.(3) Other issues can mimic IC symptoms; getting a second opinion can help determine whether IC is truly your issue or whether it’s something else.
Angie Cook saw six doctors over eight years who diagnosed her with a myriad of conditions, including IC. Then one gastro-intestinal doctor she saw spotted something on an old CAT scan and found that she had a hernia caused during the removal of her gallbladder in 2001. During her hernia surgery, the doctor discovered that her colon was pulled through the hernia and all the way down to her left hip bone, where her worse pain was. She had adhesions smashing her colon flat. After the surgery, Cook felt significantly better.
“That pain is gone,” she said. “But the damage that has [been] done in my muscles will be with me forever.”
What to know about getting a second (or third!) opinion
Determine if you need to talk to your doctor about it
If you are going to continue working with your current doctor or have a chance that you will, then you should let him know that you are going for a second opinion. If you have no plans to see the doctor again (like in my instance with the pediatric urologist who told me I was urinating incorrectly or the doctor who insisted on cathing Harwell), then don’t worry about talking with your doctor about it.
Know how to approach your doctor
Chances are if you are talking with your doctor about a second opinion, then it’s less about you not trusting him and more about you wanting to explore all of your treatment options. Be honest with your doctor about that. You can even ask your current doctor who he would recommend.(4)
For example, I really like and trust my local urologist, but we both know he isn’t an IC specialist. I’ve been seeing him for nearly 20 years, though, and we’ve built a good relationship. When I wanted to explore different treatments than he could offer, I opted to drive a few hours away to Beaumont Women’s Urology Center in Michigan. I told my local urologist about what I was doing there, because he remains my ongoing urologist who I go to with problems. He wasn’t at all offended and, in fact, thought it was pretty neat that I was able to go to a bigger center more equipped to handle IC patients.
Check with your insurance company
You always want to check with your insurance company before seeing any new provider. Be sure to inquire about whether the doctor you want to see is in your network, what tests might not be covered for a certain timeframe and whether you need a referral from another physician in order to see a specialist. Most insurance companies do cover second opinions but may require pre-authorizations or something else.(5) You certainly don’t want to get stuck with a large, unexpected medical bill!
Have your medical records handy
The doctor giving a second opinion needs to have your relevant medical records. You can gather those and take in copies yourself or request your medical provider(s) send the records to the other doctor.(5) (Check to make sure surgery records are included. Sometimes those have to be gotten from the hospital instead of from your doctor’s office.) Be sure to allow enough time for your previous doctor(s) to gather and/or send the records. Paperwork can move slowly! Knowing your history will allow the doctor to determine how best to move forward and any additional tests he may want to do. It can save you money in the form of not having to pay for duplicate tests (even just your co-pay) or go through painful procedures.
Even if your current doctor is the one referring you to the additional doctor that doesn’t mean copies of your records will be sent to the new doctor. A study from Harvard Medical School found 20% of patients are sent to a specialist without any communication from the referring doctor.(6) Double-checking the new office has copies of your records before you go to your first appointment is always a good plan.
Look for a different medical institution
Because loyalties run deep, to get a true second opinion, you want to look for a doctor who isn’t in any way affiliated with your current doctor or his medical institution.(7) Sometimes doctors can be loyal to their fellow doctors at their institution. Also, doctors at different facilities can have different approaches. This is especially true with IC because it has so many variables in place. You want a set of fresh eyes to get a true second opinion.
- Gordon S. Top 5 Reasons to Get a Second Opinion. VeryWell Health. Updated Dec. 6, 2019.
- Canning K. 4 Signs You Should See Another Doctor for a Second Opinion. Health.com. Nov. 22, 2017.
- Zimmermann E. Mayo Clinic Researchers Demonstrate Value of Second Opinions. Mayo Clinic News Network. April 4, 2017.
- Miles V. How to Ask for a Second Opinion Without Offending Your Doctor. Compass Healthcare Solutions. May 25, 2016.
- Miller KR. The Art of Getting a Second Medical Opinion. AARP. Dec. 9, 2019.
- Harvard Health Publishing. Five Things You May Not Know About Second Opinions, From the Harvard Health Letter. Oct. 2011.
- WebMD. How to Ask for a Second Opinion. May 15, 2000.