I have read that Chari can cause urinary problems but, nothing specific. I suffer horribly from frequent urination and pressure that feels like a severe UTI but comes back negative. This has me debilitated for years. I have to work and live but frankly, Its beginning to get tough. I live on AZO and tramadol. Does anyone else have these problems? It would be nice to know Im not alone.
Yes, I had urge incontinence/frequency before my surgery. I do not have that now though have weakened musculature in that area. I would urge you to see a pelvic floor physical therapist as they may be able to tease out the factors that affect you. Chiari does not have to be the only factor in your urinary concerns.
Not all therapists are created equally so look carefully and get referrals from people in the medical world not just happy clients. I would rather see a slightly grumpy therapist with a good skill set than a friendly, cheerful one who listens to all my woes and makes me feel good but is not so knowledgeable! Larger centers tend to have more skilled therapists.
Good luck in finding someone
Hi Zoe, I'm really sorry to hear you've been having so much pain. I have been dealing with very similar symptoms to what you've described and you might want to look into interstitial cystitis. It's a condition that causes bladder pain and symptoms similar to a UTI - like you described. Just like Chiari, interstitial cystitis is not very well-understood, but it is possible that mast cells in the bladder overreact and release histamines in the bladder lining and causes inflammation. I would suggest seeing a urogynecologist, they are more familiar with IC than a regular urologist or gyno. https://www.ichelp.org/HealthcareProviderRegistry has a great list of doctors that specialize in interstitial cystitis. Changing your diet may also help relieve symptoms; highly acidic foods like tomatoes and onions can irritate the bladder, just google "IC diet" for a full list of foods. However, there is a great OTC pill called "prelief," which helps neutralize acidic foods if taken before eating the acidic food. I know for sure they have it at Walgreens. I hope this helps! The bladder pain can be so severe and unbearable.
Thanks Lindsey I will try the prelief and diet. I still have no insurance so docs are out of the question for now. But that helps a lot to know that someone out there understands. The suffering is horrible and working like this is terrible, I am a nurse and have made errors ( nothing too series thank god) due to the pain making it hard to consentrate.
I have problems with that to I try to go and I have to set in the bathroom it’s like my brain has to tell my kidneys to go I know that sounds crazy but that’s how it feels. I have to set there what feels like forever and when I finally go its never a hole lot then it’s like I have to go all night long. So if I tell a doctor this they are going to think I am crazy.