View Full Version : Having a very hard time
04-29-2011, 01:35 PM
Hi everyone. After numerous tests, I have had three doctors tell me that they are sure I have IC but I've not yet been officially diagnosed. I have just recently been able to get in to see a very well-respected female urologist that says it COULD be IC but that she wants to check other possibilities first before submitting me to painful, invasive tests. So far I've had 3 ultrasounds, too many urine cultures to count, 5 rounds of antibiotics and 2 CT scans (1 standard and 1 with contrast). I was PRAYING for a kidney stone but all tests came back "normal" or "grossly unremarkable."
I had never had any bladder problems before two months ago. No UTI's, no pain, no frequency -- Nothing. Then literally overnight, I felt the symptoms of what seemed to be a bladder infection. I did test positive for Ecoli and was hopeful for some relief with the antibiotics. When they (Macrobid) didn't help, I was given Cipro. Again, hopeful that that was what would do the trick but that didn't help either. We do know I had an infection but no matter what, the extreme frequency has never gone away since that first day of the infection. In two months, I have not had one moment that I didn't feel like I have to pee. OAB medicine helps maybe a little but I'm still in the bathroom every 30-45 minutes.
My uro suspected that there could be a stone stuck near my bladder that wasn't necessarily causing obstruction, but just irritation. Now that the scans show there is no stone, we know that it's something else. She told me that it could possibly be IC that I have but that in many, if not cases, people suffering with IC pee to get relief. She said that the bladder is irritated and it becomes more painful as the bladder fills up. I don't have the pain, pe se, but just feel like my bladder is full all the time, which is so very uncomfortable nevertheness. Uro said that a lot of IC patients with frequency issues will at least get a few minutes, even if only a very few, of relief after voiding. I don't. I've also not experienced pain after eating certain foods (I tried the IC diet for 6 weeks and saw zero change) and I don't have pain with sex.
I guess what I'm trying to find out is whether anyone reading this has just frequency issues and if so, do you get ANY relief after peeing? And does it feel like your bladder is burning or otherwise hurting as it fills up? I have gone as long as 2 hours when I've forced myself to hold it just to see if I can and I don't have incontinence and the discomfort level never really varies. It's pretty much the same whether I've just peed or it's been an hour. Just always feels uncomfortably full. We're trying more tests to see if it is IC or something else but I cannot understand how I could be absolutely fine one day, and then peeing 30-40 times a day the next (and since). I've heard IC can come on suddenly, triggered by some initial infections or event but my uro says that's not typical and I'm wondering if that has happened to any of you or if it was a gradual thing for you, with several episodes of UTI's or other symptoms popping up here and there for a while? Or did your IC just hit one day out of the clear blue?
Sorry for the long post but I am literally just trying to hang on right now. When I got the results of my CT scan today, I had a panic attack in the parking lot. I couldn't breathe. I've been crying at the drop of a hat for the past many weeks because I cannot wrap my head around the fact that this may be my life now. Any insight on the above questions would really be appreciated and maybe help me understand this all a little more. :(
04-29-2011, 02:47 PM
Hi and welcome!
First off, take a deep breath! All of us have been where you are--scared and overwhelmed by the symptoms and I'm sure by what you have been reading on this board.
Whether you have IC or not, there are things that may help calm your bladder and relieve your symptoms, such as heating pad, cold packs, over the counter AZO Standard or Uristat (available at any pharmacy in the US), tylenol, drinking lots of water, stress reduction, and the IC diet.
Whatever you do, NO cranberry juice ;)
Hang in there. You'll find the support here you need for most any bladder issue.
04-29-2011, 03:04 PM
Thank you, Briza. I really am overwhelmed but I also know I'm in the right place. I only recently registered and this is only my second post but I've been reading this board for at least a few months and there really are some wonderful people here.
I've tried heat packs but they don't seem to do anything for the frequency which is really the main symptom I have. The AZO didn't help with that either and since I have no burning, that wasn't an issue to begin with. I did take cranberry pills when I was first diagnosed with a postive UTI culture but none since the first round of antibiotics. I also cut out any sodas, juice, and coffee (which is torture for me, btw). That's why I'm so confused: Food doesn't seem to affect my symptoms, nor does sex. I just always have to pee. OAB medications (Sanctura and Detrol) have not done much to help either. I just want to find out what is causing this and nobody can seem to find anything yet.
04-30-2011, 02:26 AM
Other medications that may help with frequency are elavil...or one of the pee blue meds such as Prosed DS---most of those contain an antispasmodic. Or you might try an antispasmodic such as hyoscyamine all by itself.
Anyway, those are some meds you could discuss with your doctor.
I wouldn't lose faith in the diet. Takes a while for an irritated bladder to calm down, sometimes months. So cutting out the major stuff like coffee, tea, tomato products, vinegar, and fruit juice while drinking lots of water can only help.
Many people with bladder issues also have a pelvic floor dysfunction problem as well--can create spasms with in turn cause frequency. Gentle stretching and stress reduction techniques such as meditation have really helped me with this and are helping me to stay in remission.
Good luck :)
Your symptoms sound so much like mine were when my IC started. I think it's great you've found a uro who wants to be so thorough about ruling every other possibility out. So, so smart.
Hang in there. And please know that even if it is IC, there is hope and it gets better for most of us. :kissing:
04-30-2011, 08:05 AM
Thank you, Briza and vm. Getting encouragement like you're giving me is really what it keeping me going at the moment. I need to know it gets better because right now I'm pretty much housebound due to the frequency and even watching TV is hard because I can't get comfortable and all I think about it "I have to pee. I have to pee." 24/7. I know I cannot live like this and so far everything we've tried has really done nothing to help. Knowing that there may be SOMETHING that can allow me to do some normal things again is comforting.
vm, so your IC came on suddenly, too?
Yep. I think maybe my c-section a month before triggered it, but one day I was fine - the next BAM. You can read my story, it's linked below. :)
04-30-2011, 08:47 AM
Sorry, I saw the link after I posted. I did read your story. What an inspiration! Thank you so much for sharing!
04-30-2011, 01:26 PM
Mine came on suddenly also. One day I was fine, and the next morning I wasn't. It was really alarming because it was so sudden. Not the most pleasant thing to wake up to that's for sure.
04-30-2011, 02:06 PM
earthlady, were you ever diagnosed with a UTI when your symptoms first appeared? That's what freaked me out so much: I DID have an infection and the cultures showed E.coli but the extreme frequency never let up even after the infection cleared. I never had any prior UTI's or symptoms at all. I kept waiting for the antibiotics to help but they never did. They tried 5 different ones on me in all (currently on doxycycline) and still no change 2 months later.
05-01-2011, 12:08 AM
I was tested several times and the cultures never showed anything. They also did a cytology screen for abnormal cells and it was normal. I still can't understand how something could appear like this over night. It seems strange that there weren't even any subtle signs of anything starting.
05-01-2011, 03:34 AM
Your experience isn't unusual. In my case, when my symptoms first started the urinalysis showed high white blood cells, which indicates infection. I did a 10 day course of Cipro, my symptoms went away for a week or two, then came back with a vengeance and never left.
Before that, I had had only 2 UTIs in my life, both of those were ten or more years prior.
05-02-2011, 05:13 AM
Have you been checked for bacterial vaginitis? I had it and that caused some problems for me - it might be worth getting checked out. My gyno told me that the bacteria hang out around the urethra and cause UTI type symptoms even though the cultures come back clean. It's an easy test so you might want to get it checked out. I know some STD's can also cause urinary issues - better to eliminate the easy things early on. I felt much better after the BV treatment. I take a probiotic now to prevent any more yeast or bv issues.
05-02-2011, 02:18 PM
Thanks, endogirl2. Good advice, and yes, I have been checked for BV and all other STD's, and all came up clean. I only had a tiny bit of burning at the very end of urination when I first had a positive UTI but that cleared up in the first few days of antibiotics. My main issue is just this pressure of a full-feeling bladder all the time. When I first started reading here, I thought I must be having a flare and kept waiting for some relief. Any. In two months though, there has never been one minute that I haven't felt like my bladder is about to burst. It's not a burning or stabbing kind of pain. It just always feels like I've drank a gallon of water and held it for about 8 hours. Voiding gives no relief but the longer I wait to go, it's almost like the pressure level "resets" if that makes sense. I have another uro appointment tomorrow and am praying she can give me SOMETHING that will help with this. I tried taking oxybutynin last week when the frequency got up to every 15 minutes but it literally did nothing but dry my mouth out and make things worse by causing retention. I can't stop crying and I'm just feeling so hopeless. I need some kind of light to look to and every time I try to find one, it goes out. :(
05-02-2011, 02:53 PM
oh honey, I'm so sorry to hear this. That's awful. I can't imagine how you are feeling. Seriously, if you have to break down and bawl in the office do it, then maybe they'll see how upsetting this is for you. My problems are different. When I have my period all of my muscles tighten up. My right butt cheek area is the main problem. I literally feel like my arse is falling out of me. It's awful. All of that pain causes me to have the worst time peeing. I have to push so hard to get it out. Not fun. I had pelvic physical therapy today and she said the muscles were more taught than last week. when I got home I felt like I was busting a gut and peed alot. I guess that's sorta good. I have pain still. Tried 2 vaginal valiums to try to relax the muscles but I guess it's not helping much. I'm going to take my tramadol and go to bed. I hate how tramadol makes me feel but I have no choice - it helps with my pain. I hope you get some answers soon!
05-30-2011, 02:33 PM
Phoenixgirl, my symptoms are quite similar to yours, I think. Especially the feeling like you've drunk a gallon of water and held it for about 8 hours. :(
(I just wrote a long story about myself and realized afterwards I posted it in the wrong place, under "Share your stories" instead of the "not-diagnosed-yet" thread.)
I always feel like I have to pee. The pain just increases until I can't take it any more and I go again. Then relief for about five minutes (which is probably 5 minutes more than you get), and then increasing pain.
It must be a nightmare to have this come on so suddenly for you, and I hope by now you've gotten more answers (I think your last post was some weeks ago).
05-31-2011, 02:04 PM
Thank you very much sonomaslim. I don't know if I have many more answers but at least now I'm on a treatment plan. There is still so much about this disorder that I don't understand. I'm nowhere near remission but at least now I can wait an hour, sometimes 2 in between pees. I still feel like I have to go most of the time and even though there's still that sensation, I can hold it now. Not sure if that's due to the instills, the ami, the vesicare or all of the above but I'm happy to be able to leave the house now where before that was nearly impossible. I still have some bad days but I'm hoping the Elmiron will eventually kick in and maybe help even more. I went for a long walk with the dog yesterday and was just SO grateful to be able to do that without it being torturous. :)
06-05-2011, 12:19 PM
I was wondering if you're going ahead with any more tests. ???
I'm going to a well-respected doc here in a few weeks and was wondering if she'd want to go ahead and do a biopsy or distention and if I should do it. I don't really know how much more confirmation I need or if there are any more answers to be had.
I hope you're feeling better. :)
06-05-2011, 01:31 PM
Hi! Nope, for now I am not going to have any more tests. I've been doing really well for the past couple of weeks on just the diet, meds, and instills and then last night I did something really stupid. Food doesn't usually bother me one way or another (although I am still avoiding any coffee, soda, tea and juice). I even ate pizza last week without any problems! I guess I was feeling so good I thought I'd try something else: salsa. HUGE mistake. I had a plain chicken quesadilla and just put a tiny bit of mild salsa on it for flavor and my flare started shortly after the first bite. Today, I'm right back to having to pee every 20 minutes again. :( So depressing but it's my own fault. I just hope that that one mistake didn't set me back to where I was a few months ago. I took some tums and have been drinking tons of water today hoping to flush my bladder.
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