Today's Office Visit and PT Recommendation

[Turtlecat]

My urologist is off this week, so I met with the nurse there who is the IC person (she's listed on this site, too). She was great!

She upped my Enablex and said I could go back to taking the Urelle if needed. She also said that she believes the diet and looking into PT are the key treatments I need with the history and description I gave her of when my symptoms are the best and when they're the worst during the day (pretty symptom-free when I get up and for about an hour, then it hits). I have NO pain, only pressure and that darn frequency that's driving me insane! And the urethra pressure of "I gotta go". (I last saw the urologist 10/09, at which time he said I wasn't too bad down there, but did have several really knotted areas. Said that if the meds didn't help, he would recommend PT. I got better back then w/o the PT. I see the urologist again in two weeks.)

I'm so concerned, though, about the cost of PT since I know my catastrophic-only individual insurance won't cover it (no preexisting coverage). But maybe they can work something out visit-wise, accept payments over time, or something. If I'm not stressed enough over IC, I'm also stressed over how to pay for what may help! I've been self-employed for 20 years and my husband doesn't have any employer coverage, so we're self-insured for just the catastrophic stuff.

Anyway, anyone have any suggestions or experience with PT, I'd love to hear it!

Thanks!!

[traceann]

Glad to hear you had a great appt!! That always goes a long way towards morale I think Did you check into your hydroxyzine dosage like you wanted to?

[Turtlecat]

Thanks, Tracey! Well, I was a bit disappointed she didn't want to increase it yet. She increased the Enablex, reinforced how important the diet was (although I'm already sticking to that), and said she didn't want to change too many things at once. She did say I could keep taking the CystoProtek I had started on Monday. Since I'm going out of town, I might up it a little anyway. She also insisted I get Prelief and if there is any doubt about what I'm eating (say at a restaurant or something someone else has prepared) to take two before eating.

[traceann]

Prelief can be a huge help I always have it on hand, and I take it whenever I am not sure about something or I want to have something (in moderation) that is a known offender, lol.

Here's a couple links to a couple doctor Q&A sessions here on the ICN that have information on hydroxyzine that you might find helpful!

http://www.ic-network.com/guestlectures/theoharides1205.html

http://www.ic-network.com/guestlectures/theotranscript0503.html

http://www.ic-network.com/guestlectures/theotranscript.html

[fallenTXangel]

If you can get PT, it is sooooo worth it, hon. I just started a couple weeks ago. I was so freaked out about what in the world they were gonna do to me lol The first session she asked a ton of questions, checked out the way I stand, sit, etc.. and then she had me undress from the waist down. Just like an exam, there was a sheet, thank goodness

She did a bunch of pressing on my belly and back to see what hurt.. and then the same thing with the pelvic floor muscles. Man, I was so shy, but it was worth it. She would find a tender spot, and then press on it.. and by the time she was done, my urgency had gone down a ton (I was able to go 3 hrs without peeing! YAY!), and the pain was practically gone for a couple days.

The next session, she looked at my diary of what I had been eating and drinking (as well as how often I was going to the bathroom, and even had me count how many seconds I was going).. to see if there was a correlation between what I was eating/doing and my symptoms. Then, more of the pressing on the pressure points and belly massage. That day, I had come in super sore because my hub and I had been intimate first time in 6 months (I have endometriosis in addition to this and other stuff, so this was huge for me).. and she fixed me right up. I can't believe how a little pressing on the right spots can make a world of difference.

Also, she's teaching me how to train my bladder, and said next time we might be able to try biofeedback, so I can tell when my muscles are tensed up.

And I agree.. prelief is amazing! Today I felt kind of sick to my tummy, and the only thing that helps is sprite. So I popped 3 prelief and drank 8 oz of regular sprite with no problem =) I was able to pick some up at Walgreens. It's a lifesaver!

Good luck! I'm sure there are therapists out there who will be willing to work with you. Especially since you'll be private pay instead of insurance, so you can pay up front.. a huge selling point. If nothing else, at least get yourself a book on learning how to relax those muscles, etc.

[Turtlecat]

Thanks everyone for all your support! Last night I'd about had it with stress and always having to say, "No, I can't eat that either," and just so tired of the frequency. So I popped my first two Prelief, ate two chocolate chip cookies and drank a Coke! I was so miserable emotionally I didn't care. It made my feel better emotionally and didn't seem to bother my bladder all.

I have my first PT appointment on Monday. I appreciate your telling what it was like for you, fallenTXangel! I'm shy as well and way overweight (although I have lost 20 pounds since joining WW in September!). I'm willing to give it a try, though.

Traceann, thanks for the links!

[Motheroffour]

Can you please tell me what Prelief is? Is this a prescription medication or something over the counter?

[Turtlecat]

Prelief is OTC. I found it at a local pharmacy and a lot of people say you can get it at Walgreens. (If you search the Walgreens site, it comes up and you can order it.) It's for "heartburn or bladder symptoms caused by foods." It's talked about on this site and my urologist office recommended it. Prelief says it's the "only acid fighter that takes out food acid while leaving your protective stomach acid untouched." My urologist office said to take it with a meal if I wasn't sure it was IC safe or if I just wanted to enjoy something once in a while that's not particularly IC safe!