Starting the diagnostic process...

[Goldfinch]

Hi, here's my story (brief as I can make it.) I've had increasing symptoms since Thanksgiving, when, out of the blue, I had lots of burning and frequency. I have had very few bladder infections in my life (I'm 60) and this was different in that there was no burning or pain when I peed. My doc prescribed a short course of antibiotics without testing my urine. I drank lots of fluids (actually lots of green tea, which apparently is an irritant for many ICers) and within a couple of days felt fine. But then urgency to pee kept increasing. My urine tested neg for bacteria. My doctor thought I might have OAB syndrome, so she put me on Detrol LA to see if that helped. It did, somewhat, but I continued to have occasional burning pain that would disappear after a few hours and an infusion of liquids. My understanding of OAB is that the bladder spasms, but the lining is not irritated and OAB is not accompanied by burning pain. I was peeing more frequently, but part of that was prophylactic. I felt like my bladder capacity had decreased, altho I was not getting up during the night.

Then the symptoms returned dramatically and didn't go away. In my doc's office they did a dipstick test and no UTI showed up, so I went to see a uro. His office clearly has better testing equipment and they found bacteria. He put me on Bactrim and Urelle for the symptoms. I stopped taking the detrol and changed to a fairly conservative IC diet (not a true elimination diet) to see if that helped. I am assuming that after six days of antibiotics, if my only problem was a UTI I would feel a lot better than I do now. I don't have much burning (I am still taking the Urelle), but my bladder feels, well, just kind of wasted. I have pressure and discomfort. I tried an experiment this weekend which surprised me: I basically stayed in bed for two days, getting up only to fix some food, trying to relax. When I'm stretched out in bed (with my cuddly warm laptop) the pressure is relieved. I'm drinking plenty of water or mint tea or hot milk all day and my frequency has gone from twice an hour to as much as four hours in between bathroom breaks--as long as I stay in bed. BUT if I am walking around or standing at the stove, the symptoms return within 15 minutes and the urgency to pee comes right back.

Is this just a gravity thing? Do others find this to be the case? Meanwhile I am moving as fast as I can to figure this out. Thanks for help and support! This a great network. Okay, that wasn't brief.

[SharonA]

How long is the prescription for the anti? If it is for a short period of time (like 10 days or so), continue taking it until it runs out. If, once you are finished taking it, the symptoms continue, go back to see the doctor and discuss this with them. Infections can sometimes be obstinate and difficult to treat.

When I was first suffering symptoms, I stayed in bed as long as possible to try to delay the pain that I had every day beginning in the early afternoon. I, too thought it might be gravity working against me. But I couldn't stay in bed forever and did have things that I needed to accomplish during the day.

Once I was given a prescription for Elavil, which helped with that pain, I am now able to live a pretty normal life and not have to worry about the pain coming on every day.

[Goldfinch]

Thanks, Sharon. Clearly my bladder needs a bra. The uro gave me 7 days of Bactrim (I've taken it for six) and then a scrip for 30 days of a lesser dose of same.

[izazen]

What is your situation in terms of menopause, estrogen, HRT?
My problems began when I was 62 and was bone dry of all estrogen. I had blood in my urine (one time visible) lots of times microscopic, plus some pelvic pain, burning genital tissue (felt like pinching) and some frequency and urgency.

It turns out that the very delicate urogenital tissue which gets so dry and thin without estrogen is the same tissue that's in the bladder so if one is irritated the other can be, too.

I suffered for many months thinking I had bladder cancer. Then I finally went to a great urogyne who discovered I had urogenital atrophy, and painful bladder syndrome the latter of which is NOT full blown IC but a much milder case of same.

Now I take a bioidentical vaginal hormone cream, Estrace, 3 times a week and I feel wonderful and have for about 8 months.

Good luck

[Goldfinch]

That's very interesting, Iz. It's amazing how hard it is sometimes to really pinpoint pain, and the truth is I think my pain is evolving, or at least my perception of it is.

I sweated through 2 years of hot flashes cold turkey, sometimes every hour every day. Because I had a blood clot (the wonders of birth control during the 60's and 70's), hormones of any kind--even the so called "natural" remedies--were out of the question and probably still are. But you have given me an excellent idea. On my next visit to the uro I will ask him if he has patients who are post-menopausal, and what issues might be different.

I noticed the forums for 20-somethings up through 50-somethings. Is it pretty unusual to be diagnosed with IC after the big 6-0?

[summermom]

I've been monitoring your site for almost a year. I had all the classic symptoms. Urgency, frequency, pain, pressure etc. I had a regular cysto to check for cancer and it turned up negative. I went to Urgent care twice with the symptoms, not a UTI. I thought I had controlled it with diet and Benadryl. For months I felt fine...then I began to have intermittant blood in my urine. Again...not unheard of with IC. I finally got into a urologist who suggested a complete work-up....including a pelvic and abdominal CT scan. I was scheduled for a cystoscopy with hydrotension under anesthesia. He walked in with the CT scan and announced I had a kidney stone lodged in my ureter right at the top of my bladder! He was able to blast it with a laser that very same day. I am blessed. The IC symptoms are gone. After getting down on my knees and thanking God for this turn of events, I was torn about whether to post on this site, or not. I don't want to give people false hope that there might be a reason other than IC for their pain and discomfort but I don't want anyone to overlook any possibility in their quest for relief.

[SharonA]

Actually that is very good advice, summermom. It is very important to have everything checked out. We do suggest that people see their doctors and have them diagnose from tests and symptoms. Thank you for sharing your story.