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I am so disgusted I am so disgusted

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Unread 01-27-2005, 02:49 PM
I am so disgusted

I went for my three month follow up visit with my urologist and left so disgusted. I had a bladder flare Saturday morning, the first I've had in a while. I'm on Ditropan XL, have been since September. It helped for a while, but I could feel things slowly come back, that feeling of pressure, pain, urgency and the frequency never let up completely. Without the meds I go 28 times a day, with, around 20.
My DR doesn't thing I have IC because my bladder capacity is large. He never did a cystoscopy, only catherized me everytime and of course, even though I felt like I had a UTI the test was negative.

I asked the DR about caffeine, artificial sweetners, heavy lifting, doing extremely strong inner core workouts like Pilates,etc...things I think may cause some of my flare ups. His eyes just glazed over....Unless you're a textbook case that either meds or surgery can fix, he doesn't know what else to tell you but make you think it's in your head.

So according to him, maybe I don't really know what a spasm is. I've been dealing with this on some scale for at least 15 years. All he wanted to do was increase the Ditropan XL and see me in a year, "unless I was having a problem", meanwhile I'm standing there in pain and with a problem. I think sometimes it's unfortunate I can deal with pain. I didn't go into his office writhing in pain, I'm just not that way. I had a grapefruit size cyst burst at work and never let anyone know. I took myself off pain meds while in the hospital after having major surgery. I use to think it was better to try and deal with pain without a lot of hoopla and a lot of meds......maybe that's not the right way.

My next step is to ask my gyn Dr next month for a name of a female urologist who specializes in womens bladder issues.

I just needed to vent. Thanks for listening. Good luck to all of you suffering.

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Unread 01-27-2005, 03:03 PM
I am so disgusted

Goodness! First off, big s! I think the best thing you could do at this point is to definitely shop around for a new urologist, one who listens, cares and is well versed in IC. People suffer with this debiliating problem everyday, and while I know there is no cure, there certainly are ways to treat it and manage your symptoms. I have run across a few drs in my time like the one you're dealing with and I couldn't have run for the hills fast enough. Once you find someone that will really, truly listen and at least TRY to help you, it makes all the difference in the world. Meanwhile, what kinds of self-help things are you trying out, just in case it is IC? Keeping your diet non-acidic is very important. Also, drinking plenty of water and staying away from tea, cola and coffee are helpful. Directing heat over your bladder is soothing to some women, coolness to others. They have those stick on heat patches now that you can buy at the drug store to wear during work. Have you ever tried heat therapy? I have used it on occasion and it can really be a lifesaver. Most important though is finding a good dr, which it sounds like you are going to do.

Keep us updated, k?

Unread 01-27-2005, 04:21 PM

Bless your heart! You sound sooo frustrated---as well you should be if your dr is gaffing you off like that! I think you're doing the right thing by finding a new doctor, and you must be a stronger woman than I---I wouldn't be able to wait that long, especially in pain and with the frequency you're having. Please keep us posted on your progress, I hope you find a good dr soon.

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Unread 01-28-2005, 03:52 AM
I am so disgusted

thanks for the concern...Julies!

Julie B:

I've dealt with this problem for around 15 years but it's gotten a lot worse in the last five. I do use heat and carry one of those packs with me at all times. I work for a chiropractor and one of our patients who has IC says the heat really isn't good and ice is better. I use prelief, use to take a supplement for IC, watch the diet, etc. Believe me, I have read and read about this. I am fully informed and that is one thing that upset me so about this DR I was seeing. I really don't think he had any idea what I was talking about when I was asking the questions concerning foods, lifestyle, etc.

My gyno is a great DR and I'm having faith she will steer my in the right directions towards a good Urologist. Meanwhile I'll keep researching myself.

Unread 01-28-2005, 11:07 PM
I am so disgusted

Have you tried Amitriptyline yet? It's a tricyclic antidepressant
that somehow does something to the bladder and sort of puts
the nerve endings to sleep. I've had a bladder problem for
years and have been on ami. for about 8 years. It has really
been a lifesaver for me.

Good luck,
Unread 01-29-2005, 06:36 AM
I am so disgusted

No Phyllis, I haven't even heard of that. I'm hoping when I see my gyno next month she can steer me in the direction of a good urologist. Even though I've been dealing with this problem for years, I'm just now at the point of seeking help. I was able to keep it at bay up until now.

I'll keep your info handy.


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