HELP ME!! My Uro's not listening!!

[gottagobarefoot]

I posted this at the Canada IC message boards (Probably a lot of you have heard of it, but if you havent... it's a really great place...lots of good support there too and everyone is just so nice... :) ) I'm hoping with all the unique people and their different views on things I'll get the perfect advice.

Sorry this is so long...but even if you'll skim until the important stuff I would be so thankful...
Okay, I'm totally at a loss. After having been tested for UTI's with three different kinda of Antibiotics...twice each...and more urine samples and cultures than I could ever keep track of all coming back clean, my family doctor diagnosed me with IC. But today I went in and had my first appointment with the urologist, and he just pretty much shook his head, asked how my family was and told me that I have an Overactive Bladder. He gave me Enablex to try and told me that I had to quit the Elavil while I was going through the Enablex trial period. I dont know whether the Elavil is helping or not, I've been on it for 3 weeks to a month, and I still have to take at least one or two Tramadols every day and sometimes a Pyridium on top of those just so that I can get out of the crouching position that I've found to be the most comfortable. (I'm sure everyone on the board can understand that when I say comfortable it's still close to unbearable.) Back to the point...the thing that puzzles me is that none of my symptoms even remotely match the ones listed on all the websites and information I can find on OAB. I guess they're closer to the symptoms people describe in an IC flare up, but I've been searching the web and looking through posts here all night (and into the morning) and nobody has described the one symptom that I have. I've had this one symptom on and off ever since I started my first period...usually if it happened at all it would only happen once or maybe twice in the week before my period. When it did happen though, all I had to do was drink a glass or two of water and it was gone until the next month. Sometimes I even went two or three months without it occuring at all. Unfortunately, just recently (the end of August, 2005) it got much much worse and doesn't ever go away unless I take Pyridium and/or Tramadol. Seriously, I've tried everything...drinking a ton of water, Advil, Tylenol, herbal things, I've been on the IC diet for a month now...a few different prescrips so far, but the only thing that will help is the Tramadol and the Pyridium.

Now I'll try to explain the feeling...maybe everyone has this and I just don't understand the term for it or something...but my uroligist just waves it off as something that *we'll look into if it continues*; because he won't take the time to try and understand how it feels. Its starting to frustrate me...it's continued for over a month...I would think that's time enough to figure out its sticking around. I mean, do I have IC or OAB or what?? Alright...I don't have any pain (though that's a loaded word) that I've ever noticed. No bladder spasming, pelvic pain, vaginal pain, stomach pain, back pain...none of it. Sore muscles from lifting and such every once in a while, but nothing reoccuring or unexplainable. I also wouldn't call this pressure. I never have had, and don't currently have any urgency, frequency, or incontinence, from what I can find of they're definitions and how the uro explained them to me. Just to be clear in my point, as I understand it, urgency is having to urinate immediately to avoid pain or urinary incontinence. And frequency is when you have to urinate frequently anywhere from 10 times a day to 60 times a day to get any relief. I know from reading all night that it's way more detailed than that, but those definitions are right in a general sense, right? Even if it is a bit more complex, but I'm pretty sure neither really fit me. Frequency might explain it in a round about way I guess, but it still doesn't seem fitting. Okay, so the closest feeling I can compare it to would be having to pee extremely bad. Like being a little kid and mom just took you out to lunch at the fast food place with free refills. Like so bad that you really think you're bladder might burst open at any moment and you can feel it all the way up your back. Everyone have a good mental picture?? (I'm sorry if you really do cause it's not fun!!) But anyways, it's that feeling, but I don't actually feel the sensation in my back or any other place...just my bladder. I can tell the difference from when I actually have to pee and when it's just the symptom, though. But it's that horrible, unbearable feeling...and it never stops. It doesn't seem to matter if my bladder is empty or full...drinking water, not drinking water, urinating more often...nothing seems to help. I actually go to the bathroom about 2-3 times a day, maybe 4 if I've drunk a lot of water, but it's not more often than I've ever gone and if I try to go more often than that it just worsens the pain. Sometimes even when I'm on Tramadol and I'm almost feeling back to my pre-August normal, as soon as I go pee a somewhat milder version of that icky feeling will come back for like 10 minutes and then it will just fade away and I won't feel anything until it's time for another Tramadol. Diet really hasn't done anything so far but it does get worse if I eat tomato sauce even on pizza...I haven't been brave enough to try anything like that again yet. Sticking to spelt bread and water pretty much...also blueberries for vitamins and watermelon because fruit used to be my staple food...with those two it doesn't seem to make a difference if I'm eating them or not. And I knew pretty quick with the tomato sauce. I also drink a ton of water every day...usually over half of a gallon...it's just not working. But I've really got to do something...I'm totally losing it...this is driving me nuts!! Sometimes I scream and cry and clench my teeth and throw a complete temper tantrum just because I can't take it anymore...I feel completely out of control...and that's just not like me. I'm a pretty happy, hearty person and my pain tolerance is really high...but this isn't pain. Pain I can deal with, but this is hell worse than anything I've ever experienced...I actually can't function because if I'm not on the pain medication or if I'm waiting impatiently for it to kick in it gets so bad that I feel like I'm going to pass out. When I'm on the pain medication I remember the pain as this excruciating, horrible, dark cloud, but then when it's happening again it's even worse than I remember. As much as it sounds like it, I am not a drama queen...or maybe I am...but I didn't used to be...this is changing me around a whole lot of ways though and it's not exactly pleasant. It just gets to the point where I'm actually wondering in my head how I can be this uncomfortable and still be alive...it just doesn't seem possible.


SO...After that little spaz attack, I'll just shut up and get to the point. Is this a normal symptom for anyone else?? Is it exactly or close to or somewhat similar to what I described?? Did anybody else start this way...with no other symptoms...over the period of time or abruptly?? And if so...what are you doing about it??? How would you describe it...I haven't found a term for it it or any easy way to get it all out yet. Any info would be soooo great. I'm still having trouble accepting that that I have IC because it seems to be different from everything I've read about, but I don't know what else it could be. Plus, since IC doesnt really have any concrete symptoms this could just be one of them that I haven't come across yet. At this point even finding out it's IC would be better than not having any real answers at all...
I have another appointment with another uro on Friday...hopefully with everyones help I can be better prepared...and hopefully this next doctor will have a more open minded approach...

For whoever stuck it out through that long confusing post...THANK YOU!! It's amazing what pain med's and good rant will do for my disposition. ;)

If anybody ever wants to talk about what's going on with you then feel free to PM me...I'm all about talking about IC or just talking about nothing in particular to get my mind away from the IC. I'm just trying to mix it up and keep things flowing.

Bye for now, Chloe

[ICLori]

It sure sounds like IC to me. Urologists (and other doctors), though, were trained in medical school that overactive bladder is a common condition and IC is extremely rare (they didn't expect to ever see a case of it in their lifetimes), and only happens to post-menopausal women. Some urologists (most) have zero interest in treating female patients and zero training. And they do not bother to learn anything about female urology, either, after medical school. Can you tell I am VERY disappointed in most urologists?

I find I have better luck with urogyns - at least most of them seem to know that IC is now an extremely common disease (affecting one in every 4.5 women and one in every 9 men) so they are not so adamant that it "can't be" IC.

When the OAB medicines don't work for you - and I am sure they won't - go back, tell him it's not working, show him the article where it says 1 in every 4.5 women have IC, and tell him it's time for a diagnosis.

Hope you feel better soon - I'm sorry about all of this. You are going through the worst of it now -when you are finally diagnosed and put on some meds that help, it gets better.

Blessings, Lori

[patricia1]

I also agree with Lori. It could be IC. I would find another doctor who listen to you and try to help you. It took me 5 yrs and several docs. I finally found a younger Urologist who sat down and listen to me for the first time in five years. My gyno and I suspected IC 2 yrs prior to diagnose and asked a uro to test me for it, but the uro refused said I was 2 young and if I had there was nothing he could do for me. Because I went so long without any help, most meds and treatments did not work for me and I ended up with the Interstim that I am now having problems with that.

The one med for me that has worked for me is the Ultram same thing as the Tramadol you take. For me it works better than most narcotics do.

Like Lori said a Uro/gyno, one who specializes in the female urology portion of the field, tend to be a little more knowledgeable than a regular uro. I also have found a lot of help, respect and knowledge from my gyno also. I think the realize the true pain this disease can cause us.

Best of luck to you and keep us up to date on how things are going. Let us know if we can help with anything else

[Janie Miranda]

Wow - despite the doctor's definition of "urgency" - it sure sounds like urgency to me. I would also be looking for a different doctor. Hope you find some help soon.

[Imustpee]

When I get more than 1 oz of urine in my bladder, it feels like my bladder is so full it's going to explode...a constant painful pressure..I only get relief after I pee..

[twiggy]

Don't count on the first urologist to give you an accurate diagnosis. It took 2 years before my 1st uro believed/decided/admitted that I had IC and then he sent me to a second urologist. The average time for a proper diagnosis is 3 to 5 years! Hang in there! Personally, I think that if you are in this much pain, you need elavil or some pain meds to get you through the day. I found that it took at good month of elavil (10 mg at night and 10 mg in the morning) so that I can cope. Some need higher doses and it doesn't work for everyone. Atarax is another drug to try and probably second in terms of treatment approaches. Then, there are days when even the elavil doesn't work and I need something stronger.

The best way to diagnose IC is to have a hydrodistention of the bladder done. The patient is usually put out to do this and it usually occurs in the hospital. However, it still took my first uro 2 years to decide it was IC and then a referral to a second uro.

If you have had an infection (UTI), then it can take awhile for the inflammation in the bladder to subside.

The best advice I can give you is trust your instincts and demand adequate care!

Take good care!

[ICNDonna]

If you've only had your severe symptoms for one month, the path your uro is following is an understandable one. It may be that the medications you have been given will help if you give them a little time. And if they don't help, my suggestion would be to return to the uro and let him know they aren't doing the job.

A major part of an IC diagnosis is ruling out other possibilities. The OAB treatment can be a part of that ruling out process. If you take the meds for a few weeks without easing your discomfort (If you're huddled over, it's pain --- then it's time to go on to the next step.

And if you aren't happy with your current uro, it may be time to see another for a second opinion --- I would wait a bit before making that decision. You may find the one you have seen will be able to help.

Donna

[gottagobarefoot]

Thanks for being around guys...I'm not all alone in this!! Makes me feel more like a normal person. :)
Sooo...I have another question based on everybody's posts...

When I get more than 1 oz of urine in my bladder, it feels like my bladder is so full it's going to explode...a constant painful pressure..I only get relief after I pee..

Okay, so you only get that feeling when you have urine in your bladder?? And you do get relief from it when you pee?? I have that feeling all of the time...whether my bladder is completely full or completely empty or somewhere in the middle. They did ultrasounds yesterday to make sure that my bladder is emptying correctly and the nurse and the uro said it was totally perfect and no urine at all was found after I used the bathroom. I can't get any relief from going to the bathroom...usually if I pee it either gets worse or stays the same, but I get no relief from it. That's mainly the reason I don't really think it's urgency or frequency because I can't get any relief at all from voiding. Does any of this sound familiar to anyone?? I'm sorry for being a hindrance, but I'm still searching for answers.

And also, I guess I didn't really explain myself well...I did have an excess of one kind of bacteria (I want to say the doctor said it was Ecoli...but I'm not totally sure at this moment) in my bladder around August 10th, so they gave me the two different kinds of antibiotics. When they were finished the bacteria was gone but the symptoms hadn't changed at all.

Anyways...just wanted to add that in there. :)
Thanks again, Chloe

[vm]

Okay, so you only get that feeling when you have urine in your bladder?? And you do get relief from it when you pee?? I have that feeling all of the time...whether my bladder is completely full or completely empty or somewhere in the middle. They did ultrasounds yesterday to make sure that my bladder is emptying correctly and the nurse and the uro said it was totally perfect and no urine at all was found after I used the bathroom. I can't get any relief from going to the bathroom...usually if I pee it either gets worse or stays the same, but I get no relief from it. That's mainly the reason I don't really think it's urgency or frequency because I can't get any relief at all from voiding. Does any of this sound familiar to anyone??

Absolutely. That is how I used to feel all the time. You can click on the link in my signature to read my story - it tells more about my symptoms. (I have to add, though, that my story is a little outdated now - I feel even better than I did when I wrote it and I can eat and drink anything I want again.)

[theclownster]

Hi there! I'm sorry to hear about all you are going through. It's hard to think back to the days when I was first being diagnosed - but your post took me right back there. That was one of the most frustrating symptoms I had. It felt like I always had to go and nothing would help. I do think it did help me to drink tons of water - because then I could at least go - although sometimes I still didn't go.

What you are describing also sounds a little bit like what it feels like to be retaining (retention) - which is like when you gotta go, but you can't get anything to come out - another frustrating symptom. If you try the OAB meds and start to feel worse, it might be a good idea to contact the doctor right away. OAB meds have been known to cause retention for some people, but for others they bring lots of relief. I am on an overactive medication that really helps me in combination with other meds - so the meds might be able to help.

Either way it sounds like you don't have a good fit with your urologist. Trust your instincts and see if you can find someone else to treat you. I also would consult your primary care doctor and share your experiences. You may find that your primary care doctor will be extremely supportive and help you. The first urologist I saw just wasn't a good fit for me. When I talked to my doctor he was completely understanding and helped me find someone that I really like now.

Some other things you might want to consider: If you had some bacteria present at the beginning of August, are you sure it is completely gone? Did they do a urine culture? -which is different then just a regular urine sample type test.

Well, I'm not sure I am much help. I just wanted you to know you are not alone. I'll keep you in my thoughts. I hope you find some relief soon.

Sending warm hugs your way,
Jennifer

[emilyrose197377]

It is possible you have Ic. I would find another dr. if you think this uro is not helping you .

Kim

[Sherry5]

I hope you are communicating to your doctor as well as youare communicating to us. He needs to understand how horrible it is. No one would let you go on like that.

I have yet to see a urologist, but from what I have heard they can be less than helpful. My OBGYN diagnose my IC right away and did a potassium test to verify. Someone that works with women on a regular basis is probably more qualified.

Good Luck!

[Sarojini]

Oh, I used to feel that way (the attack of the about-to-explode, gonna pee my pants right now sort of feeling) all the time, whether or not I had urine in my bladder! It's much better now after treatment for IC, although I do have problems at certain times still.

I agree that it is possible you have IC, but many urologists are very conservative at first. It is not unusual for the first step to be trying something like Enablex, Detrol, Ditropan, or another OAB med like that to see if it helps. If it doesn't then many uros will go on to more intensive testing.

However, if your gut feeling about this uro is not good -- even if it's just that you do not like his personality -- then it's best to seek another opinion. During this time before diagnosis, it's especially important to be able to communicate clearly and openly with your doctor, and if you feel you can't or that he isn't listening, then it's time to find someone you feel more comfortable with. :grouphug:

[karen10300]

I also know the feeling you are talking about. I can go to the bathroom and my bladder still feels like it is still full enough to burst. I always say that I feel like I have to go to pee really really bad but I know better because I have just got done peeing. I also so know from being cathed at my Drs. office that I do empty my bladder all the way.It's just a terrible awful annoying feeling that I have along with the burning pain. So at least from the previos posts, you know that you are not alone.