from killer_cons photobooth15501
10:14 pm - 02/24/2006

UTIs - chronic and intense
So since the age of about seven I've gotten UTIs that are very intense and very frequent.

What I mean by intense is like I cannot leave the bathroom intense. Let alone go to school or work. I have actually SLEPT on the toilet, DEAD SOBER. If I go to the doctor's for a urine sample I am inevitably in tears by the time I get there, because the pain is so bad. Granted I have never given birth, broken a bone, or had surgery. But the general impression I've gotten from friends is that their UTIs are not this horrible. They are able to do normal daily activities and the infection sometimes just goes away on its own.

One of my kidneys has always been larger than the other, and I've always sort of suspected this may have something to do with my problem. I am on hormonal birth control and I am sexually active, but obviously my problem started way before that, and it hasn't gotten worse or better.

I was wondering if anyone else in the community has experienced intense or chronic UTIs (not related to hygiene or sex). My doctor has never been able to figure it out, but then again my mom made me go to the pediatrician until I was 18 and refused to let me see a gyno (joy!).

I would appreciate stories, information I haven't found, comments, anything.
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rockstarbob 25th-Feb-2006 03:28 am (UTC)
Hi there. Have you seen this resource from our side bar?

http://www.livejournal.com/community/vaginapagina/6881731.html

Hope you find the answers you're looking for while you're here.
photobooth15501 25th-Feb-2006 03:34 am (UTC)
Yeah but I didn't see anything relevant to my question. If I'm missing something though, I'm sorry, I'll read it again.
rockstarbob 25th-Feb-2006 09:17 pm (UTC)
No worries! I'm never sure who's seen it and who hasn't, so I was just pointing it out.

Good luck--hope you experience some relief soon.
photobooth15501 26th-Feb-2006 11:22 pm (UTC)
Thanks, I really appreciate you guys letting me post this :)
jennifer0246 25th-Feb-2006 03:43 am (UTC)
Oh good, I'm glad you posted. Hopefully you can find some new tips or tricks!

(I'm sure you have stock in the Ocean Spray cranberry company by now, and that's really my only advice.)
photobooth15501 25th-Feb-2006 03:46 am (UTC)
Oh yes, I'm a believer. That and no undies.
althea 25th-Feb-2006 06:43 am (UTC)
Hi. :-) As you already know, I don't suffer nearly as much as you do, but I just wanted to send up a little flag re: the Ocean Spray. You may already know this, but since jennifer0246 mentioned Ocean Spray, I just wanted to point out that "cranberry juice cocktail" is nowhere near as helpful as pure (nasty, bitter) cranberry juice or even cranberry juice blends that are 100% juice. I haven't tried cranberry pills yet, but I guess they're just as good because they're pretty pure. I think all the sugar and corn syrup and water in the cocktail makes it way less helpful.
rockstarbob 25th-Feb-2006 08:39 pm (UTC)
I was just going to say that. It's more expensive, but the pure cranberry juice is better for you and more likely to help with UTI stuff since it has less sugar.
spazzzz 25th-Feb-2006 04:09 am (UTC)
I am the same way. My doctors/gyno has just said that it can be caused by stress, or anything else. They can get very flabergasted, because they feel as if I should have a better reason for getting them, other than "stress".

I've always peed & washed thoroughly after sex, and I try not to hold anything in. I do as much as I can to prevent them, but I can never get a break.

As long as I can get my antibiotics to reduce my kidney infections (I get them right after my UTI's/bladder infections), and get enough Cranberry juice, I'm fine. I live on the antibiotics and pain medicine for weeks.

I'm always excused from classes, and my professors are really cool about it (as long as I'm upfront with them about it).

I can't do anything while I have them, either.. so you definitely are not alone! At least the pain isn't as bad as kidney stones. That's the only thing that gets me going to get better - I do not want those horrid things again!
queensugar 25th-Feb-2006 04:46 am (UTC)
Well, I've had some minor UTIs that clear up quickly with cranberry pills.

On the other hand, my first two UTIs... I swear to god, death would have come as a blessing. I have never, ever, EVER been in that much agony in my life, ever.

I also know many women who have them chronically... some women are just more prone to them than others. Good luck.
robynchick 25th-Feb-2006 07:21 am (UTC)
Have you seen a urologist? You should definitely go see a specialist about this.

When I get them, mine are really really painful too.
photobooth15501 25th-Feb-2006 02:47 pm (UTC)
Unfortunately I'm broke, uninsured, and living in a rural Appalachian town. As soon as I'm in school I probably will :)
cry_havoc 25th-Feb-2006 07:23 am (UTC)
Hmm, can't relate personally, but i remember my first UTI. That was hell. I wouldn't leave the toilet either, and car rides to the doctor were HELL. I do get UTI's frequently from sex though and something that has helped me is acidophilus supplements, cranberry pills enriched with vitamin C, and Kefir. I don't know if you've heard of Kefir, but it's a cultured probiotic smoothie drink with about 10 different types of acidophilus. It can be found in health food stores. It helps with chronic yeast infections AND chronic UTI's. I haven't had a UTI since I started drinking it. And if I feel a twinge, a glass or two and lots of water brings me right out of it. It's worth a try. :)
photobooth15501 25th-Feb-2006 02:52 pm (UTC)
I actually LOVE Kefir, I didn't know it helped with UTIs although I've heard that it's good for yeasties and disgestive tract stuff. Thanks!
kitkat72 25th-Feb-2006 08:55 am (UTC)
From what I experienced with mine was....1)birth control pills can alter your ph level and cause probs. 2) taking baths can cause them especially if you use oils, bubbles or anything else in the standing water, also if you are on well water and there is bacteria in the water (that was my issue) Being that you have had them for some time I highly suggest that you see a urologist being they specialise in the urinary tract and see if he/she can get to the root of the issue and fix it. Antibiotics are great every now and then for infections but as they are killing the infection they are also killing the good bacteria that your body needs and you will also build up a resistance to them and then you could end up in real trouble. Good luck and please see a urologist asap. also the cranberry capsules are just as good a cranberry juice.(more portable too)
mutt182 25th-Feb-2006 08:57 am (UTC)
Do your urine samples come back as saying you definately have UTIs? (I know some people whose samples come back clear but their DRs insist it must be a UTI).


Waterfall D-Mannose is supposed to be very good natural supplement for re-occuring bacterial cystitis. Though there have been rumours that the new ingredients don't work as well as they used to, but it might be worth a try. I know you can get it in the US so have a google.

http://www.sweet-cures.com/feedback.html#1 has customer feedback.

I've had Interstitial Cystitis for ten years, and had to leave school at 15 because it got so bad, I'm now chronically agoraphobic and can't work due to my IC symptoms.

http://www.websitetoolbox.com/tool/mb/cobf?forum=1989
^
This is a good online forum for Bacterial Cystitis, it's UK based but there are lots of people who would be able to help you I should think.

My GP told me recently that one of her patients who has had reoccuring UTI's for about 7 years recently has managed to control it with a drug called "Yentrieve", even though it's not an anti-biotic it's somehow managed to help her. Keep on at your DR and ask to be referred to a urologist.

(please don't drink cranberry juice or take cranberry supplements, they give light relief for the symptoms sometimes, but when you have UTI's frequently all that acid and sugar ultimately makes things much worse).

xxx
photobooth15501 25th-Feb-2006 02:50 pm (UTC)
Ah thank you so much! Yes they do come back with bacteria, although sometimes the buggers seem to take a few days to show up. I really appreciate all that information! How did you get diagnosed with IC?
mutt182 25th-Feb-2006 03:37 pm (UTC)
To get diagnosed with IC you have to be referred to a urologist who will investigate by doing a cystopcopy (a camera into the bladder, usually done under anesthetic), it's chronic inflammination of the bladder wall, which means the bladder wall is covered in ulcers and pinpoint bleeding, and the lining that protects the bladder is deteriorated so everything that goes into your body attacks your bladder. A lot of people with IC are unable to work and some are even housebound.

http://www.interstitialcystitis.co.uk/medicalconditions/BC/bacterialcystitis.htm

there's some info there about BC, but the forum I linked you to has a lot of people in your position :) I know there was one on there who had tried the Water D Mannose and it completely controlled her symptoms, but there's a lot of other lifestyle and diet tips on the internet that may help you manage things :)

xxx
photobooth15501 25th-Feb-2006 04:12 pm (UTC)
Ahh thank you! Yeah when I was younger my parents decided they didn't want to get this kind of testing done, but I may do it once I have insurance/income and live in a more metropolitan area. Thanks again for being so helpful!
laughing_dreams 25th-Feb-2006 07:55 pm (UTC)
yep! i had a caliceal diverticulum on my left kidney oh my uti's and kidney infections galore! (well only one full on kidney infection requiring hospitalization but still...) it was hell i had to have surgery to remove the growth which required 4 days in the ICU and 5 days in the regular hospital suckage
photobooth15501 25th-Feb-2006 08:05 pm (UTC)
How did you get diagnosed? Did you have the growth for a long time before it was operated on? Is that the kind of thing that would show up on an ultrasound (I had one a few years ago, nothing showed up except the fact that oen of my kidneys is larger than the other)?
photobooth15501 Re: Narrow Urethra?? — 25th-Feb-2006 11:08 pm (UTC)
Holy shit, I would need to be totally knocked out for them to put a catheter in my urethra. But I do have that problem sometimes, like I'll have to really push to get my bladder empty. Thanks a lot for the info.. looks like I need to take a trip to the urologist!
jennifer 25th-Feb-2006 11:18 pm (UTC)
I'd definitely go visit a urologist when you can. This sounds like something that could be a kidney problem and they'd be your best bet for sorting that out.
neims16 26th-Feb-2006 12:55 am (UTC)
Ugh. Sorry to hear about the chronic UTIs. I had a couple previously and they weren't bad at all. I got one this year that ended up with me in the ER. I couldn't sit still to have them take my blood pressure, check me out, anything at all, because I was in so much pain. It was awful.

I second (third? fourth?) the recommendations to see a urologist when your situation permits. For me, I know that my UTIs have been related to "honeymoon syndrome" - having lots of sex after not having any for a while (which happens a lot in a long distance relationship!). So I just pay careful attention to peeing right after sex, drinking lots of fluids, and wiping the right way! Good luck to you.
photobooth15501 26th-Feb-2006 02:03 am (UTC)
Yeah I have to watch out for the same thing! I'm in a long distance relationship too and sex has definitely triggered my UTIs before. Thanks for the comment, I seriously appreciate just knowing I'm not the only one who goes through this kind of pain
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