I don't even know what to call this post...read on

[elitynski]

Sorry - I tried titling this post about 10 different ways...and just couldn't figure out what to call it.

Again...I just feel very confused about this whole thing. On the positive side it seems like my BM activity has stopped creating so much flaring up for the frequency feeling...so that is good.

On the other hand...I think the fact that smaller amounts of urine in my bladder tends to make me feel like I have to go sooner than other people is really bumming me out.

I'm sort of stuck because I don't know what I should do and am having trouble thinking through this whole thing clearly. So I guess here are some of my thoughts - and please feel free to respond....

1) Glad the BM activity seems to not be setting off the frequency feeling - so that's a positive. However, my frequency feeling is still there - by this I mean the need to pee at around the 2 hour mark is fairly consistent. At this point I think I'm voiding about a cup of urine, but I've only measured once.

2) Given that I don't know what my voiding patterns are in terms of volume - I'm wondering if I should just do my own voiding journal. the only question I have is how do I measure the urine while I'm at work. I mean - do I need to bring a pyrex measuring cup??

3)I've thought about going back to my URO but I don't think I should go back until I've really put my total protocol into place consistently - this means exercise, stretching, relaxation, a healthy diet, good sleep, hot baths & tea - I'm really inconsistent here.

4) Once I do go back to my Dr. should I ask him to look at certain drugs (so many mentioned in various threads) and what about other testing - Urodynamics, etc.

5) Should I give myself time to lose more weight - again, there is some speculation and feeling that my bladder might be more irriated because the abdominal fat is putting pressure on the bladder. Would another 20 - 50 lb loss help me see some positive results.

6) Every time I read about how someone is experiencing frequency or needing to void when their bladder is only X full - I sort of identify with it and start to wonder if I have what they have. I just really want to know exactly what I have and what to do about it.

7) I still have hope that this is going to get better, but I'm just not sure when.

8) I read some posts about nerve damage tonight and I wonder if I have some of that - but I've never fallen or been hurt so I'm wondering if nerve damage is a possibility. If it is a possibility then can nerve damage be repaired or reversed?

9) I've been tested for urine retention and I don't have any (from that ultra sound thingy) but I'm wondering why my bladder seems to go into "I want to void" mode sooner.

10) Checked out a local IC support group and they have one - but it is like all women and no men. The woman wasn't sure I'd feel comfortable and frankly, I'm not sure if this would be right for me either.

11) I hate the fact that long car rides and travel kind of irritates everything and I would really like to get this under control.

12) I have this supposition that YOGA might help this condition but I'm not sure and feel like I need to lose more weight for me to be able to really stretch out my muscles.

Anyways...this is really random...I hope some of you can make sense of it and give me any insights.

Feeling hopeful for the future, but somewhat alone and isolated tonight.

[leelee88]

I am sorry you are haveing such a rough time with all this.
I would keep a voiding journel for the Dr and for yourself. And losing weight I would think would not have any effect because I feel better now then I did a year ago and I am 40 pounds heavier now than I was then.
So think what you are feeling just might be your bladder being irritated and imflamed. I have found what got that under control for me was Atarax. It seems to keep the imflamtion down by controlling the mass cells in the bladder. Don't know exactly how it works but it sure has helped me.
Well, I hope more people will chime in and give you thier thoughts.

[dyno]

Hi,

It can definately be overwhelming trying to get a handle on everything. Keeping a voiding diary can be very helpful to your Dr as well as a food diary can help you and him.

If you are having any doubts about what is going on, I urge you go get into your Dr. again. Work with him as a team and tackle these things together. By gaining the knowledge you are you will be better prepared to discuss different testing/treatment options with him. Take one step at a time but doing it together with your Dr. is the best option.:)

[ICNDonna]

I agree. I suggest you make an appointment with your uro, then keep a voiding diary for at least a few days before the appointment. When you're at home, you can measure, but when you're away from home, just the time would be okay.

Every two hours isn't bad at all unless you're in pain most of that two hours. Even when I feel really good, I go at least that often.

Donna

[SharonA]

I'm going to jump in here and agree that you should see a doctor. You mentioned that you "really want to know exactly what I have and what to do about it". That needs to be determined by your doctor. Take this list, plus a diet diary, pain diary, and voiding diary with you when you do. All this information will be helpful to the doctor and it will make it much easier on you to explain what and how you are feeling. Don't wait until all the things you mentioned fall into line. You can work on those things with your doctor once you find out for sure what is causing all your symptoms.

[my3boysmcr]

First, I agree with the others that you need to see your doctor. Same one, new one, whatever you think makes you feel most comfortable. My first uro was such a jerk (he did an in-office cysto back in 2005 with a rigid scope (OUCH) and declared that the inflammation was probably from recurrent UTIs) that I was afraid to go back in January 2007 when my gyn suggested that she felt there was more going on than recurrent UTIs (I had many, many clean cultures). I finally went to a new urogyn in May 2007 who did many, many tests and did finally diagnose me. She wasn't the greatest but we did get to the bottom of things. I am now with a third doctor on this case (I also have a uro who handled my kidney stone) and LOVE him! Many of us have had similar stories of needing to find the right doctor. Don't give up or avoid seeing someone.

Secondly, I did my voiding journal before visiting the uro-gyn. I measured on the first day only. I was pretty consistently getting anywhere from less than an ounce to about 3-4 ounces. I was able to accurately guess without looking after a little while. Of course, when you go every half hour, you get really familiar quickly! Why not do it on a day off? Then you have something to judge from when you are at work.

I don't think that weight plays into this specifically. I am 5'5" and about 115 and as I said, I've spent quite a lot of time in the bathroom.

As far as your concerns regarding incompete voiding, nerve damage, etc, you need to address this with a doctor who can do a complete exam with you. The doctor I am with now spends about 3 hours with each new patient on the first visit. The receptionist tells you to expect to be there 2 hours but he listens instead of just talking. He wants to know who you are and what your symptoms, concerns, etc are. I am grateful to have found him.

Finally, keep up that hope that things will get better, eventually. Even when I was at my worst last summer, I had hope. I am sure that is why I am doing well today. I have a long way to go but I am not in the bathroom 60+ times a day and 10-20 times at night anymore. When I got back down to 30 times a day, I was thrilled! It could always be worse and can most certainly be much better too.