Hi everyone! My name is Konnie and I think I may have IC. I tried to send a post yesterday and after pouring my heart out I hit spell check and my post disappeared!
I was so frusterated yesterday I just didn't repost but today I am determined to get the help I need so here I am again!
I spent most of my miserable and painful day yesterday searching my symptoms on the internet and on the phone with doctors offices, oh yeah and in the toilet!
I will try to give you a brief history. In 2003-2004/05 I have 15 UTI's in 9 months. Some tests can bag negative so my doctor put me on antibiotic and sent it out for culture, yet some came back positive. He suggested a few times "if this continues we will need to send you to a specialist" but we never did. I got pregnant with a HUGE surprise baby in June of 2005. I had not one UTI my entire pregnancy. I gave birth to an almost 10 pound WONDERFUL baby boy in March of 2006. When he was 3 months I discovered I had a dropped bladder which my OB/GYN told me just to do kegals for and it would be fine. When my son was around 6 months I started to get regular periods again (I was and still am breastfeeding). With these cycles I began once again getting UTI's. It only took 2-3 for me to figure out that there was a pattern. Within 2-3 days of my period ending I got a UTI every month. The first time I went to my primary care doc because my GYN could not possibly see me for 4-6 weeks. I gave a sample and was given Keflex (what I was told was the only safe antibiotic for me). The next month I called my doc with yet another UTI and was told he could not treat me because I am breastfeeding, call my GYN
I called and once again they could not possibly see me for 4-6 weeks, call my primary
Needless to say, I called another GYN who I had previously used and he got me in the next morning. My test was negative. He gave me another script for keflex and told me I needed a referal to a uroligist. I got the referal and in the meantime got another UTI, this time DH had some left over keflex from his vasectomy and I started taking that (I know bad). I went to the specialist and as I waited to go in I read an article of a women with IC. She had all of my symptoms. I went into the doctor in tears. Now at this point I wasn't piecing the puzzle together well and I didn't even mention that some of my UTI's came back as not UTI's. o the doc just looked at me and said this is not you...you have UTI's people with IC do not get UTI's HUH?????????????????? Now I know ohhhhhhh most of their urine comes back negative....
On with my appointment. He did a urine test, he did an ultrasound of my kidney's, he did an internal and told me my dropped bladder was severe and I need surgery. He then did some test were I stood with a chuk pad under me and he held my bladder as I coughed. He then said I have incontinence and he needs to do some tests to see which kind and I will need surgery to repair that too. I told him about y breastfeeding and that unless "medically" necessary any surgery would have to wait until my son weans. He agreed we could wait. He the told me he thought I had kidney reflux because I got kidney and UTI's as a child and sent me for a VSUG. It took two cycles to get that test done because I got my period and then I got another UTI, which he called a script in for me, and then I had to be infection free for two weeks before he would let me do the test. Let me just say I have no idea how children do that test. It was HORRIBLE! I went in afarid of the catherer but when they filled my bladded the pain was unreal! I was then in pain for a few days after the test. It took me two weeks of calling to finally get the results from the doctors office. All looked fine...and...well the doc doesn't have you down for any more tests so unless you get another UTI that is it.
WHAT???????? Now I remember him saying he wanted to do a urodynamics test but that was for the incontinence not the UTI's. The nurse said nope that is it! GRRRRRRRRRRR!!!! That month I didn't get a UTI. I felt hopeful. Then yesterday I woke up............for two days or more I was aching just not right. i thought it was the wacky weather. I also felt a few twinges of UTI symptoms here and there but tried to ignore it, no I am NOT getting another one. I was also EXAUSTED. Well yesterday I woke up and that morning desire to tinkle felt not normal, it felt classic UTI. I was afraid to go to the bathroom and when I did there was no second guessing I had a full blown UTI. I couldn't even take my DD to school yesterday. I got 5 minutes down the road and had to call a friend whose kids go to the same school. She met me on the side of the road and I cried all the way home.
I am so sorry this is so long! I called the uroligist office immedietly and was told "I don't know what to tell you the doc is in surgery all day today".
I asked for a nurse and was put through to a voice mail. in the meantime I called my primary and left him a voice mail that I wanted another referal. I got a call back from the nurse with the same oh well attitude. I pretty much said I have to be treated! She asked me how I was qualified to "know" I have a UTI. UGGGGGGGGGGG!!! When I began to cry she offered to send me for a urine test at the lab and call me in a 2 day trail of antibiotic until the doc could see me. It took 3 hours to hear back about going to the lab. I went, pee'd and came home. NO SCRIPT WAS EVER CALLED IN FOR ME! My doc called me back with a new referal and I got an appointement for the 25th, next week. Some relief, emotionally that is! I began taking uristat and pumpkin seed oil and more cranberry pills and motrin. I found a few keflex and took two. I called the doc this morning and the nurse called back saying "I left the note on his desk last night but he must have overlooked it"
She then proceeds to tell me he is in surgery all morning but with be in their other office in the afternoon, his 1st appointment is at 3. She will forward a note to his medical assistant and I can call there in the afternoon. She then asks if the pills I planned to take helped (I told her I was going to take uristat after I gave my pee-pee sample). UGGGGGGGG!! I said it does help take the edge of but you do realize it is not antibiotic right?
OMG I don't know if I want to scream or cry!!!! I cannot do this anymore! I am way too busy to go through this every freaking month! I spent my day researching yesterday and it just so happens that the doc I go to next week is on the referal list on this site, the ONLY doc in my area. I want to be hopeful that he will help me but I am so doubtful now! I left another message for my primary this morning. I need to know how many of my UTI tests have come back negative. I also picked up an AZO test kit yesterday and did it. It came back positive for WBC and negative for nitrates.
When I asked the nurse if my test results were in she said no it takes at least 48 hours.
I called my dad yesterday in tears. I am NOT a hypocondreat (sp) when there is something worng with me there is really something wrong. These docs act like it is no big deal. I know now why people with chronic illness get so depressed. I need someone to tell me what I have and that I will be okay! I have 3 kids and a husband to take care of. UGGGGGGGG!! I am sorry!
My doc just called and in 2003 I had 2 come back negative and 1 come back minimal 10-50,000 count she said? So maybe 1/4 of my infections are negative. Maybe it is not IC. I don't know but I just pray this doc helps me!
Any insightor encouragment, been there done that stuff would be great. I am exausted, I am in pain, I am worn out from this stuff!
Thank you!
Konnie

I spent most of my miserable and painful day yesterday searching my symptoms on the internet and on the phone with doctors offices, oh yeah and in the toilet!
I will try to give you a brief history. In 2003-2004/05 I have 15 UTI's in 9 months. Some tests can bag negative so my doctor put me on antibiotic and sent it out for culture, yet some came back positive. He suggested a few times "if this continues we will need to send you to a specialist" but we never did. I got pregnant with a HUGE surprise baby in June of 2005. I had not one UTI my entire pregnancy. I gave birth to an almost 10 pound WONDERFUL baby boy in March of 2006. When he was 3 months I discovered I had a dropped bladder which my OB/GYN told me just to do kegals for and it would be fine. When my son was around 6 months I started to get regular periods again (I was and still am breastfeeding). With these cycles I began once again getting UTI's. It only took 2-3 for me to figure out that there was a pattern. Within 2-3 days of my period ending I got a UTI every month. The first time I went to my primary care doc because my GYN could not possibly see me for 4-6 weeks. I gave a sample and was given Keflex (what I was told was the only safe antibiotic for me). The next month I called my doc with yet another UTI and was told he could not treat me because I am breastfeeding, call my GYN


On with my appointment. He did a urine test, he did an ultrasound of my kidney's, he did an internal and told me my dropped bladder was severe and I need surgery. He then did some test were I stood with a chuk pad under me and he held my bladder as I coughed. He then said I have incontinence and he needs to do some tests to see which kind and I will need surgery to repair that too. I told him about y breastfeeding and that unless "medically" necessary any surgery would have to wait until my son weans. He agreed we could wait. He the told me he thought I had kidney reflux because I got kidney and UTI's as a child and sent me for a VSUG. It took two cycles to get that test done because I got my period and then I got another UTI, which he called a script in for me, and then I had to be infection free for two weeks before he would let me do the test. Let me just say I have no idea how children do that test. It was HORRIBLE! I went in afarid of the catherer but when they filled my bladded the pain was unreal! I was then in pain for a few days after the test. It took me two weeks of calling to finally get the results from the doctors office. All looked fine...and...well the doc doesn't have you down for any more tests so unless you get another UTI that is it.

I am so sorry this is so long! I called the uroligist office immedietly and was told "I don't know what to tell you the doc is in surgery all day today".



OMG I don't know if I want to scream or cry!!!! I cannot do this anymore! I am way too busy to go through this every freaking month! I spent my day researching yesterday and it just so happens that the doc I go to next week is on the referal list on this site, the ONLY doc in my area. I want to be hopeful that he will help me but I am so doubtful now! I left another message for my primary this morning. I need to know how many of my UTI tests have come back negative. I also picked up an AZO test kit yesterday and did it. It came back positive for WBC and negative for nitrates.


I called my dad yesterday in tears. I am NOT a hypocondreat (sp) when there is something worng with me there is really something wrong. These docs act like it is no big deal. I know now why people with chronic illness get so depressed. I need someone to tell me what I have and that I will be okay! I have 3 kids and a husband to take care of. UGGGGGGGG!! I am sorry!
My doc just called and in 2003 I had 2 come back negative and 1 come back minimal 10-50,000 count she said? So maybe 1/4 of my infections are negative. Maybe it is not IC. I don't know but I just pray this doc helps me!

Any insightor encouragment, been there done that stuff would be great. I am exausted, I am in pain, I am worn out from this stuff!
Thank you!
Konnie
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