When I went to see my doctor several weeks ago, I bit the bullet and told him about my bladder problem. He looked a little surprised when I asked him about the SPARC Sling. I guess I wasn’t supposed to know about it but I’d done my homework. His answer about the sling was that it was more successful at treating bladder prolapse than the Marshall Marchetti. He said he has one patient who has the sling and she was in an accident. Afraid it might have torn loose at impact, she consulted him and he called her surgeon. The surgeon told him the only way that could happen was if the bladder, itself, ruptured. Since then, I have found that the sling can exacerbate urge incontinence. Hmmmmmm, is all I have to say. I hope my problem isn’t prolapse.
He asked for a urine sample. While I was in the waiting room, I’d gone to the restroom so I would be comfortable the rest of the time I was there. I told him I wasn’t sure I could supply it. He said, “Aw, c’mon! You can do it! I won’t need much. It’s like Brylcreem—a little dab’ll do ya!” He told me the specimen cups were on the back of the commode in a basket and sure enough, there they were, individually wrapped. I managed enough to come up to maybe half an inch in the bottom. I went back to the exam room. When he came in, he explained the need for a sample. He said, “I was afraid you might be spilling sugar but you aren’t.” One possible reason ruled out.
He discussed medication but I assured him I don’t want to go that route. I’ve used more than one kind and in different strengths and got off the last one more than four years ago. I was amazed at how much better I felt, otherwise, when I did. The medication had lost its effectiveness but the side effects had stayed on.
I said I’d done my homework. I thought I had. The next day, I got an email inviting me to join a forum which is focused on urinary incontinence. I wasn’t sure I wanted to. Writing about it is one thing. Talking to my doctor about it is another thing. Joining an incontinence forum was something else. It wasn’t that I was shy about my problem. Everyone who knows me is aware of it. But to get with a bunch of people I don’t know and discuss it, well…
For a few days, I put it off. Then, I thought what can it hurt so I signed up. I uploaded a picture and partially completed my profile. I posted an introduction and sat back and waited. And waited. And waited. Finally, four days later, I emailed the person who had emailed me and whined a little. Then I posted another message in a different area. Almost immediately, I got results. I don’t know if the person who posted a reply is the person who emailed me in the first place but she asked for the other members to help me however they could.
I must say it has been a help. Since I have been an active member of the forum, I have found my problems are minor compared to some of the others. One of the members is paralyzed. Others have conditions that aren’t that extreme but are much worse than mine. At least I’m not to the diaper stage.
It’s been a revelation to find out about more treatment options than I ever knew are available. One person I know of has had Botox injected into the bladder. Does that mean he/she would have to self-catheterize? It’s not an option that I’m interested in so it’s one I won’t spend time investigating.
One person has had the mini-arc sling surgery and it’s been a rousing success. The going at first was a little rough but after everything healed, it was fine.
By far the most interesting option to me is PFS. Now, in my world, that’s an acronym for Patient Financial Services. In the urinary dysfunction world, it stands for Pelvic Floor Stimulation. In the UK and Australia, the little machine is a NeuroTrac. It isn’t available in the United States. To be more specific, it isn’t sold or utilized in the US. I don’t remember exactly how one web site stated it but it made it sound like it would be illegal here in any shape, form or fashion.
There are comparable products in the US sold under various names. One is the Liberty. What hurts is they are very expensive and are only available with a doctor’s prescription. One web site says insurance may cover up to 80% of the cost. That’s a big “may” when the total is upwards of $1,000. What happens if the insurance comes back and says it’s non-covered?
That’s where our insurance system doesn’t even begin to compare to the UK’s. One forum member told me their treatments and supplies are all free. Diapers (referred to as “nappies”), catheters, the NeuroTrac, whatever. Free. Nobody pays anything. Nothing. Nada. Now, isn’t that a kick in the teeth?
Not long after I joined, one message said something about a “continence” nurse. Not knowing what a continence nurse is, I asked the obvious question. I was told it was a nurse who would assess the patient’s condition and recommend remedies. Now, I’d like to have access to someone like that. Then, a continence nurse from Massachusetts joined and she has offered to try to find one in my area. I’ve taken her up on it but haven’t heard anything back yet.
There are even videos on youtube. I can relate to what this woman has gone through except I’ve been having problems to one degree or another for far longer than she has.
I used to have to ask DH land so I could go to the bathroom if the plane was a smaller one not equipped with a bathroom. That was a long time ago. DS1 says he will never go on another extended trip with me after I had to stop every sixty miles or so. It kind of stretched out the time we were en route.
As for the daily routine, I can sometimes “psych” my bladder into relaxing if I am somewhere other than home but let me climb the steps and open the front door and Twinkle better not be in the way! I have drenched myself more than once.
On to current events. When I was out walking one day, I met my doctor. He’d told me my situation was ridiculous to ignore and to let him know if I wanted a referral to a urologist. I’d had several nights of nearly no sleep because I was having to get up frequently. I said I was ready to see a specialist. He asked if I had anyone specific in mind and I named one. Besides that one, he mentioned another who has an office closer by.
The next day, his office nurse contacted me to confirm who I’d named. She called to set up an appointment but rang me back to let me know he doesn’t see women! That was okay. I’d done some more research on him after the fact and found that he didn’t deal well with the female population, anyway. I told her to go with the doc’s recommendation. She was given several different days and times, well into the future, that were available. I settled on January 14, 2010. In the meantime, I’ll continue Googling.
In regards to Googling, I found SitORSquat to help those in need find a bathroom anywhere in the world. Amazing what’s on the World Wide Web, isn’t it? One link leads to another. I found that one through this one.
If you would be interested in checking out the Urinary Incontinence Support Group, click here. Be prepared for notification every time someone posts. You might want to set up a special folder for the emails. They seem to come in spurts, though (kind of appropriate). It’s either feast or famine. Who said the World Wide Web is isolating and impersonal? Whoever it was evidently never got online and part of a community. Some of us are deprived and some choose to be. I’d say it’s their loss.
You might be right that this is the first part in a series. I hope it doesn’t turn out to be too long. I’d like to report the solution soon. Wish me luck. No, on second thought, pray for me. I need a sure thing.