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So, I haven't been diagnosed yet, but I am pretty sure that I have IC. The only problem is, I have been trying to get somebody to help me out w/ my bladder issues for YEARS, to no avail. I finally had an experience this week that caused me to say, this is it! I am so glad that I found this site because I found a recommendation for a doctor in my city. I've already submitted my info to their website for an appointment. 
I started having recurrent UTIs at 15 (I'm now in my 30s) - base rate is 3-4 a year, sometimes more often, never less often.
Once I hit college, every few times I would go in for what I thought was a UTI, my urine culture, dipstick, etc. would come back clean. I also started noticing that I would get an "infection" after drinking too much coffee or drinking alcohol the night before. Now, I know that coffee can't give you an infection, but thinking that maybe I was just more prone to getting one when dehydrated, I told my doctor this. He basically laughed in my face, when what he should have done is put two and two together - clean culture, sensitivity to bladder irritants, maybe some testing? no.
At one point I was almost constantly having symptoms, and I finally went to a uro. All he did was put me on 6 mos of antibiotics. This helped, sort of. It brought me back down to my usual 3-4 a year.
Fast forward, almost 10 years later . . . I'm having a pretty rapid increase in symptoms. Now, I pretty much constantly have a low level of bladder pain.
Frequency has increased dramatically. I just finished grad school. Last year, I couldn't sit through an hour class, going to the bathroom right before it started, without having to go really badly at the end. Just a couple of months ago, I started having to get up in the night. Every night.
The infections have gotten worse (if they are all infections, of which I am not convinced). Not in frequency, but with the attendant pain. I will go from baseline low level irritation to a 10 on the pain scale after going to the bathroom. I can tell that it is going to happen right before I go. I will just have to sit on the toilet and pee small bits every few minutes for 30 mins to an hour until I can get to the kitchen to get some pyridium or utira c. Once that kicks in, I feel a little better. Better enough to get off of the toilet, at least.
I said to myself, I really need to make sure that I have a regular physician to help me out with this. So I went to one a couple of months ago so I could establish a relationship and told her about my issues, about the pain with the bladder infections, etc. Well, I got one this week, called her office first thing 8:30 Monday morning. Spoke to the nurse, who told me the Dr. was out, but she would talk to another Dr and call me back.
Around 11, I called again, because I was in an extreme amount of pain, and it went straight to voicemail, so I left a message pleading for someone to call me back about the pain. Didn't happen. Again at 1:30 - receptionist says the nurse is "out to lunch still" but that she'll make sure she calls when she gets back.
Finally, I called again at 10 until 4, on hold for 10 minutes, straight to voicemail. Couldn't get ahold of another nurse, another doctor, anybody. I called the patient complaint line for the clinic (it's a pretty decent sized academic medical center's facility) and spoke with someone there. Finally got the nurse to call me back.
They aren't doing a urine culture. Just a call in for antibiotics. I was too emotional at that point to talk about the pain or another prescription for utira c (which it looks like may be discontinued?)
I have never felt so uncared for in my life. I wrote my doctor a polite email describing the day, and basically "fired" her. The worst thing about it is, this clinic is supposed to follow the "patient-centered medical home" model, where you are supposed to have better access to your physician. Talk about lip service with no follow through.
Last month when I went to the gyno I told her I was having IC symptoms too. She did a urine culture, which came back negative, big surprise. Still no recommendations for further testing, nothing.
Hopefully I will get an appointment with this doctor that others suggested on the site. He specializes in pelvic pain.
I started having recurrent UTIs at 15 (I'm now in my 30s) - base rate is 3-4 a year, sometimes more often, never less often.
Once I hit college, every few times I would go in for what I thought was a UTI, my urine culture, dipstick, etc. would come back clean. I also started noticing that I would get an "infection" after drinking too much coffee or drinking alcohol the night before. Now, I know that coffee can't give you an infection, but thinking that maybe I was just more prone to getting one when dehydrated, I told my doctor this. He basically laughed in my face, when what he should have done is put two and two together - clean culture, sensitivity to bladder irritants, maybe some testing? no.
At one point I was almost constantly having symptoms, and I finally went to a uro. All he did was put me on 6 mos of antibiotics. This helped, sort of. It brought me back down to my usual 3-4 a year.
Fast forward, almost 10 years later . . . I'm having a pretty rapid increase in symptoms. Now, I pretty much constantly have a low level of bladder pain.
Frequency has increased dramatically. I just finished grad school. Last year, I couldn't sit through an hour class, going to the bathroom right before it started, without having to go really badly at the end. Just a couple of months ago, I started having to get up in the night. Every night.
The infections have gotten worse (if they are all infections, of which I am not convinced). Not in frequency, but with the attendant pain. I will go from baseline low level irritation to a 10 on the pain scale after going to the bathroom. I can tell that it is going to happen right before I go. I will just have to sit on the toilet and pee small bits every few minutes for 30 mins to an hour until I can get to the kitchen to get some pyridium or utira c. Once that kicks in, I feel a little better. Better enough to get off of the toilet, at least.
I said to myself, I really need to make sure that I have a regular physician to help me out with this. So I went to one a couple of months ago so I could establish a relationship and told her about my issues, about the pain with the bladder infections, etc. Well, I got one this week, called her office first thing 8:30 Monday morning. Spoke to the nurse, who told me the Dr. was out, but she would talk to another Dr and call me back.
Around 11, I called again, because I was in an extreme amount of pain, and it went straight to voicemail, so I left a message pleading for someone to call me back about the pain. Didn't happen. Again at 1:30 - receptionist says the nurse is "out to lunch still" but that she'll make sure she calls when she gets back.
Finally, I called again at 10 until 4, on hold for 10 minutes, straight to voicemail. Couldn't get ahold of another nurse, another doctor, anybody. I called the patient complaint line for the clinic (it's a pretty decent sized academic medical center's facility) and spoke with someone there. Finally got the nurse to call me back.
They aren't doing a urine culture. Just a call in for antibiotics. I was too emotional at that point to talk about the pain or another prescription for utira c (which it looks like may be discontinued?)
I have never felt so uncared for in my life. I wrote my doctor a polite email describing the day, and basically "fired" her. The worst thing about it is, this clinic is supposed to follow the "patient-centered medical home" model, where you are supposed to have better access to your physician. Talk about lip service with no follow through.
Last month when I went to the gyno I told her I was having IC symptoms too. She did a urine culture, which came back negative, big surprise. Still no recommendations for further testing, nothing.
Hopefully I will get an appointment with this doctor that others suggested on the site. He specializes in pelvic pain.
to the IC Network. Be sure to let us know when you get the appointment.
) Actually, a lot of what you wrote sounds similar to what I went through too. I'm so sorry this is happening to you! But,...good for you for sticking up for yourself and pushing on! I hate to admit it, but I gave up. I figured I just had to learn to live with it. I wish I had done as you are doing and kept searching!
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