Confused
I finally had my cystoscopy this morning. The doctor told me my bladder wall looked great. No lesions, no cracks etc.
He then went on to tell me that he did not think that I had IC because I tolerated the procedure so well, my bladder looked great and my daily pain was low. Normally, his IC patients are in large amounts of pain with cystoscopy and have a lot of daily pain.
I’m completely floored and confused because the NP told me I had IC, started me in the IC diet and had set me up with the urologist in the practice that is the IC expert.
So now I have OAB according to him.
I probably should be happy but I just don’t understand this.
Does this seem off?
Posted Aug 20, 2021, 3:47 PM UTC
925
Yes, it does seem off. Cystoscopy is no longer a routine part of IC diagnosis because less than 10% of ICers have any kind of visible bladder damage. It can rule out other conditions, but it cannot rule IC itself in or out. Pain is also completely subjective; some ICers find cystoscopy a breeze and others find it excruciating, and everything in between. If you're not confident about the OAB diagnosis, you might want to consider a second opinion from a doctor that specializes in IC. It sounds like the urologist you saw isn't keeping up with modern guidelines for diagnosis. If you're in the US, the ICA and ICN doctor search engines are a good way to see your local options for expert IC care.
I am definitely considering a second opinion at this point. It didn’t feel right for some reason. When questioning his nurse, she said in order to have ic I would have to have inflammation which would cause lots of pain or bladder spasms when the my filled my bladder with the water.
Also, he is insisting I use mybetriq, even after letting his nurse know that $400 a month was just no doable for me.
The doctors nurse told me to apply for the manufacturers assistance program.
We have references about cystoscopy and a summary of the current guidelines from the American Urological Association in the Cystoscopy FAQ in the sidebar. This office is operating based on outdated diagnostic criteria that actual IC experts weren't using even before the AUA guidance. It's always OK to get a second opinion if you're not satisfied with your diagnosis or treatment options. Even if you do have OAB, there are literally a dozen cheaper medications you could try instead of Myrbetriq.
His phone nurse told me that since I didn’t do well on oxybutynin that this was one of my only options. After about 6 days of that medicine I couldn’t empty my bladder all the way.
This is part of the reason I feel so defeated and frustrated. I don’t know enough about OAB treatments to refute that
That's just.. so far from accurate. Here's a list of some of the other most common OAB medications:
They are all in the same class as oxybutynin, unlike Myrbetriq, but they all have different rates of side effects. Many patients have to do some trial and error to find a drug that works for them without side effects, but it's not like there are only two options and then you're SOL.
And thank you, HakunaYaTatas. I appreciate all the information you’re sharing and I hear you. I was completely in shock after my appointment.
I had a lot of hope for today’s visit and I’m very disappointed and heartbroken right now because now I get to start over again. I’ve wasted 4 months of my life and a lot of cash and I’m just broken.
After the call back about from the nurse I just broke down, and I don’t cry hardly ever.
I know exactly what you mean, I have absolutely been there myself. I first developed IC symptoms when I was 18, but I didn't get diagnosed for about ten years. In that time, I saw 9 urologists and each time it was just like you're describing. It's so defeating to have doctors dismiss you, or not listen to your concerns, or try treatments that don't work for you. I went several years between new doctors sometimes because I couldn't take the depression after a bad visit. I finally did some research on IC and decided to see a specialist, and that was how I got the right diagnosis and treatment. I wish I'd done it sooner, but honestly I just couldn't. Those appointments took a toll on me and I needed time to work up the courage to see a new doctor. It's OK if that's the case for you too.
I did not do well on myrbetriq or oxybutytin ( IR or ER ) but vesicare was a wonde drug for me. Everyone should have a choice and it sounds like you definitely need to talk to a more compassionate provider. Either OAB or IC or both, you still deserve to be heard and treated with respect.
Yah ruling out diagnosis just on pain tolerance or threshold doesn't seem right. Hope you can find meds that help, and highly suggest PT if you can afford it and find a knowledgeable one. Good luck!
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My experience, so take what you will from it: I've had urodynamics too, which confirmed/diagnosed OAB due to detrusor hyperactivity and significant retention (200-300ml) due to bladder neck obstruction from my hypertonic pelvic floor.
I am following a "bladder sensitive" diet (so this isn't just relative to IC, any bladder triggers). I used OAB meds for a number of months post TURBT (bladder surgery for inflammatory tumor via urethra) so that helped until things calmed down, but then retention became more of a problem, so my uro urged me to wean myself off the meds long term.
All this time, "painful bladder syndrome" has been in my chart, but the main thing I'm trying to combat with my PT is pelvic floor relaxation - as this feels like its the only thing I can work on. My experience isn't "normal" IC (not that anyone's is, it seem) as it started with numerous tumors, so I've had cystoscopy multiple times to deal with that, rather than damage due to IC. But it seems like all these issues are so deeply interconnected and related to pelvic floor / or neurological causes.
Hope that some/any of this is helpful in your journey!
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Urodynamics is not a standard part of IC diagnosis either. It can be helpful when an alternative diagnosis is possible, but it's not a very sensitive or specific series of texts. For example, people with PFD can have totally normal urodynamics findings, and people with abnormal urodynamics can have no muscular or physical reason for those results other than their IC symptoms. But there is no consistent urodynamics result that is diagnostic for IC itself. Like cystoscopy, urodynamics is not to be used routinely but rather when a specific alternative diagnosis needs to be rules out. You can read about this in the American Urological Association Guidelines for Interstitial Cystitis if you like, there's a link in the Cystoscopy FAQ in the sidebar.
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