I think some voyages are predestined; that is, nature immerses us so thoroughly in an experience that we emerge from the torrent drenched with knowledge and soaked with dismay or or delight. Such is happening to me. For the last 3 months my whole world swirls around water - water in, water out, water on the floor, water in the laundry. I can't escape it, but can only hope to float to safety, buoyed by a good attitude and the hope of a doctor that she can stem the tide. My goal is to circumnavigate the world of the bladder and learn what is known about the problems it can cause and be able to share that with my fellow cruise-goers.
Four months ago it was like a slow flash flood, my world of trickles and worries became one of pain and gully-washers. I had had small amounts of incontinence since just before my diagnosis in 2007. Now and then, I would have small, annoying leaks, but not enough to change my course or wash me out to sea. I saw the Uro-Gynecologist and she offered the two streams of treatment, drugs for the overactive bladder or Incontinence Physical Therapy. At first I declined both. I didn't want any more drugs and just wasn't in the mood to get intimate with a therapist to self train.
This worked for two years. But, last spring, '09, the problem was increasing. My options were the same. I opted for Physical Therapy which was a revelation. It was helpful and empowering. I wrote about my journey in a series of Health Pages. About one half of people with MS and Overactive Bladder will be helped by Physical Therapy. There is a neurological problem, but there are also techniques to enhance our ability to overcome it. I found the experience to be empowering and self-affirming. "I" myself, was able to fight back against the torrent of problems causing me to be tossed around like a wreck against the rocks. I now see that Incontinence PT is likely to help only those with a milder problem.
The most common - and treatable - problem for people with MS is the Overactive Bladder. Now, this seems like a piddly little diagnosis and I didn't want to be one of those women on TV with OAB. The symptoms vary from frequent, strong urges and the fear of leaking to frequent, strong painful spasms with the guarantee of some leaking. What I began suffering from this spring was painful spasms followed by the dam spillway losing everything. No amount of the techniques I learned in PT could close the breach. No matter how much protection I wore, nore how I tried to pre-empt the process by timing my visits to the BR, I lost it all every time. I now keep the mop and cleaner in my room at all times, own gads of pairs of underwear and have a more intimate relationship with my washer. I never eave the house without my overnight bag packed with two changes of clothes and innumerable pads.
My URO-G is sympathetic. She seems to understand how far I have drifted out into a sea of despair and loss of self control and self-esteem. We redid the Urodynamic studies and in a sick joke, undoutedly organized by Poseidon himself, it was normal. NORMAL!!!!? Such is MS, she says. So, I rejected more work from PT. I do not believe that any further trials at self strengthening will allay this problem. So, she gave me samples of Enablex and Sanctura. Two of the newest and priciest meds to quell the floods.
Enablex might have well have been sugar pills. No effect on pain, cramps, floods, or need to swab the deck. The Sanctura was little better. I did notice the cramps were "slightly" better. At least they didn't bring tears to my eyes, thereby adding to the overall deluge. I also found that the flood was delayed 3 to 5 seconds, rather than appearing immediately upon the first urges. Neither of them had any of the well-known side effects of drowsiness, dry mouth, constipation known to happen with this category of meds.
Another feature began about this time. They had taught me to self-catheterize. This was easy, but demonstrated that mostly I did not have retention - the most serious urinary consequence of MS and the autonomic nerves controlling urination. I also began to have a deep aching in my .... undercarriage...mostly in the bow, but extending to the stern also. Higher up there was a constant aching. I had three back-to-back urinary infections. The waters became cloudy and polluted. It was a month before that was taken care of, but the pain of the infections continued. Now, I always hurt - ache - and I take nothing for granted - like feeling okay. It feels like I always need to release the floodgates, but often nothing is there.
My next voyage out was with Vesicare and this did more to dull the waves of angry pain and seemed to delay the "puddling" somewhat more. So she prescribed Vesicare - only to be told by my insurance that I must fail trials of Detrol LA and Oxybutinin ER first. Okay, now we are 6 weeks into the drug trials. Detrol LA - hmm... Big mistake. As if overtaken by a sneaker wave I was bowled over and tossed back and forth with the ill feeling that must have been side effects. Headache, chest pressure, wooziness - never before have I been seasick. No life is worth living feeling that way. But, yet, no decrease in pain nor in the now predictable floods. No hope of a friendly port. I wondered if there was any active ingredient in it at all. A third drug failed.
Oxybutinin ER was next. By this time I had lost my navigational charts, my navigator had bailed (or been washed overboard - I lost track of the casualities, except for one hapless mouse found behind my recliner). Sugar pill? Not even. Nothing was changed. I doubled it without a thought. Did I even take it? No dry mouth, no drowsiness, and most of all no reduction in the now-epic floodings. Fourth drug a real loser.
That leaves Vesicare, but I truly doubt this will be any life saver, nor even a child-sized water safety vest or WaterWings, though the wings would be a hoot to wear to formal dinners. I, at least, could be safe knowing that when the flood gates opened, I would be saved as all the others washed helplessly by me. :))
She had a long talk with me two weeks ago about Botox. Seems more and more MSers are opting for that youthful bladder look. This procedure is essentially a cystoscopy. It's like an upsidedown periscope where they can peer into the bladder and do stuff like instill meds or clean off the barnacles. They inject the bladder wall with 20 little torpedos of Botox. The goal is to cause partial paralysis of the detrusor muscle of the bladder wall, alleviate the cramping, and the incontinence, but still allow functioning. If they overdo it the bladder become temporarily paralyzed and one must self-cath until enough has worn off to function again. This procedure needs to be done about every 6 months.
So, that is what I know. I will learn more and continue to fill in the facts of the different aspects of flood control. I will also learn about retention and soon you all will be awash with the knowledge of what is out there to help.