I keep wanting to post to my blog, but being so medicated I’ve not had the ability to write coherently for a while and whatever hours of lucidity I do achieve during the day are, by necessity, spent on more immediate concerns. So I realize that if I try to write, this is just going to end up being a mumbled up jumble of a blog post, and you’ll have to forgive me, as the mental effort alone required to write it is beyond exhausting.
If anything, I should try to give you an update on my bladder. Haha, that sounds funny. I have lost nearly all sense of time over the course of the last….??? weeks. Based on blog posts and my calendar, I’m guessing my brain/memory has lost track of nearly the last month. So I’ll do this update in a question/answer format as it seems I can think that way the clearest. Tonight just answering one question, more when brain/time/pain/life permits.
What happened with your bladder?
I saw the urologist a few days ago. Though my tests were essentially negative for UTI, I did finish a course of antibiotics a few weeks ago. The bladder pain has been INTENSE and I’ve taken very strong meds to help keep me out of the Emergency Room. The urologist’s take on the situation is that, given all my other neurological issues and the fact that the nerves running down my legs also run across my bladder, he was frankly shocked that I’d not had serious bladder issues up to this point. Actually, given similar neurological issues I’ve had with pelvic floor dyssynergia and pelvic outlet obstruction, for which I completed months of biofeedback retraining to regain bowel function, all of which have a similar etiology (damage to central/peripheral nervous system(s)), and the daily attention I continue to give to maintaining the progress I worked so hard to achieve with regards to bowel function do make it surprising that my bladder has worked so effortlessly until more recently! I can honestly admit that a well-working bladder is something I didn’t preemptively think to be grateful for.
You know all those things you find out you were taking for granted when chronic pain or illness strikes? I now try to be grateful for all those things BEFORE I have to lose them in order to become genuinely grateful for them. Call it preemptive gratitude, if you will.
The urologist said I do not have interstitial cystitis (which I think in some ways is good since further dietary restrictions may be impossible without malnutrition as a side effect and bladder augmentation would be contraindicated for someone with a history of CRPS). We still don’t know if side effects to Lyrica may be what set this off; I think we’ll never know unless someday I decide to re-try Lyrica because it helped my leg pain…but that day is a long ways off. Could also be that since I did have a little bit of bacteria in my UTI culture (very little compared to the amount needed to register the test “positive” for a UTI), my super-sensitive body just freaked out and here we are.
In either case, the urologist diagnosed neurogenic bladder. This is common in folks who have spinal cord injuries, multiple sclerosis, cerebral palsy, and peripheral neuropathy among other degenerative diseases. In my case, my bladder is both overactive and underactive – it is seriously confused about its job description. Basically there isn’t much he can do for me, there’s no cure; once you get it, you’ve got it like all my other health problems. He will continue to give me bladder meds like Ditropan and Pyridium, and adjusting the dosages of these meds based on my symptoms (as he explained my symptoms are likely to frequently fluctuate); like my gut, I now have the job of constantly managing my bladder’s function as much as possible. Yay. 😦
I love that copy-and-paste function:
What is neurogenic bladder?
Neurogenic bladder is the loss of normal bladder function caused by damage to part of the nervous system. The damage can cause the bladder to be underactive, in which it is unable to contract and unable to empty completely, overactive, in which it contracts to frequently without being able to be inhibited or inability to coordinate bladder contractions with sphincter relaxation (Detrusor Sphincter Dysnergey or DSD).
In my case, the good news is that with medication my bladder isn’t as angry and I’m learning to manage the situation more constructively and to recognize certain triggers. For example, I’ve learned that riding in the car makes my bladder spasms much worse and greatly increases my pain (and need for bathroom stops!). Bumpy roads and seat belts are NOT my friends. So it might be that increasing my Ditropan to stop spasms when traveling will make me more comfortable. I’ve also learned that holding my bladder instead of going can make it worse, but going too much also makes it worse…what helpful information, right? (Sense sarcasm?) Leaning up against a counter or putting something in my lap that bumps my bladder is a bad idea…and a wet one.
At least it doesn’t seem to me that I have CRPS in my bladder, which was my biggest fear. Granted, I NEVER THOUGHT A BLADDER COULD HURT SO BADLY! I had primarily put my finger on three differential diagnoses: UTI (which had been ruled out by five separate lab tests), Interstitial Cystitis (family history, though my symptoms didn’t quite match), or CRPS in my bladder (can’t imagine anything worse, personally). I did realize neurogenic bladder was a possibility, but given that I don’t have a spinal cord injury, I don’t have MS, though doctors are telling me I do have mild cerebral palsy and it’s shown up in my medical records a number of times – another topic for another day – I guess I didn’t really think that was within the main 3 possible diagnoses. Which is why I have a urologist. I mean, I worked with guys and gals who have spinal cord injuries and cerebral palsy – I’ve helped them learn to self-catheterize, I’ve watched them deal with neurogenic bladder issues from incontinence to pain to fighting through the right medications to find a balance so they could control their bowel and bladder continence and avoid emergency situations as well.
Guess I just never hoped or expected to be in that category of unfortunate folks.
It is what it is.