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Nekhbet
08-18-2007, 05:48 PM
Hi,
Bit of an embarrasing question- but lately it has been hurting a bit when I pee :oops: . I didn't think anything of it before but it is getting worse. I had a urinalysis a couple of days ago (it was checking on my kidneys with the whole vasculitis thing)..
So I was at my GPs yesterday and I asked about it. The doc haddn't checked it yet but the receptionist said that to her it looked like there was no infection and blood and protein were all normal.

So what could it be. I'm assuming she would have seen if they found casts or something. Is it a side effect of the prednisolone? Could it be related to the vasulitis/lupus thing?

On the plus side- the whole energy boost has kicked in from the prednisolone and I feel fabulous. If a little moody (my poor hubby :oops: )

Razzleberry
08-20-2007, 05:54 AM
UTIs are how my Lupus initially manifested. I'd get RAGING UTIs and really high out of control fevers and then I'd be flat on my back in the hospital with rashes and fevers and incredible aches all over my body. It took 4 times of this nonsense to get a diagnosis of Lupus but now that I'm on Lupus meds etc ALL my UTI and bladder issues have resolved (this is after at least 10 years and many urologists etc ...you'd think they'd at least contemplate Lupus when a woman presents like that wouldn't you? ...but that's another whole issue).

Anyway, I would have terrible symptoms of UTIs without the bacteria showing up in the labs one time and the next time there would be a bad infection evident. It was always so random. Now I'm extremely careful about all things urine related :oops: and get myself to a doc at the first sign of any peeing pain.

I would advise you to do the same ....my rheumy said UTIs were very common in Lupus patients but the way mine manifest is somewhat different. Your's could be similar to mine.

The things I do now to avoid UTIs which have been helpful include:
Wet wipes ...to stay very very clean
Peeing and wet wipes before and after sex
Cotton underware
Cranberry juice every day
Lots and lots of water
Antibiotics at the first sign of painful urination

I hope this has been of some help. Good luck with your pesky old bladder :!:

RottieGirl
08-20-2007, 09:52 AM
I was just going to post a question about the same thing! It feels like I have a urinary tract infection - have the "urge" to go even when there is very little there, pressure in bladder, mild burning sensation after going... But I just got back from my PCP's office, where they did a urine test and said it was fine.

I was hoping that with a diagnosis I would feel like less of a heel going to the doctor's for things they can't figure out, but I was worng. Not that the doc made me feel that way, she gave me a Rx for anti-biotics "just in case the machine missed something". Whatever.

Has anyone else ever had these symptoms and had it be something other than a UTI? Could it be a UTI with no bacteria in my urine? I'm going to get the rx filled and try the antibiotics.

RG

Nekhbet
08-20-2007, 03:05 PM
ok- more embarrassing. It turned out to be an ulcer in the area :oops: . I didn't think that a UTI sounded right.

I looked at a couple of lupus sites as I remembered that it said that you can get them there- as well as the nose and mouth- but still :oops: .

I didn't see it when it started hurting- and didn't notice until I found some blood.

OK TMI :oops:

Nekhbet
08-20-2007, 03:07 PM
Great suggestions though Mrs Murdena. I've always wondered how well the cranberry juice works- is it just like Ural or something to neutralise your urine?

Nekhbet
08-20-2007, 03:10 PM
RottieGirl- I understand about feeling like a heel going to the Dr for things that they can't figure out. I so often feel like I am wasteing everyones time as they "never" can do anything about it. Now they just say- yep- It's the lupus and send me home. Then my rheumie told me that I should be seeing my GP more often :roll: . To do what exactly??

SonyaLA
08-20-2007, 05:41 PM
Don't feel embarrassed Nekhbet!

These things that happen to us just don't seem normal! Before my diagnosis, and I was still trying to convince my GP there was something wrong with me, I developed a mouth ulcer the size of a silver dollar in the back of my throat. I thought I had some awful infection. My doc made me feel like such an idiot... grrrr. "it's just a mouth ulcer"... you would think he could have starting putting all the clues together, but no... he thought it was all in my head. It was my GYN that kept trying to help me, and eventually figured it all out.

BTW - .. I had UTI's for years with no evidence of bacteria, one of my many symptoms that finally started me on the path to learning I had lupus.

newyorkgirl
08-21-2007, 09:09 PM
well, I haven't been diagnosed with lupus yet, but I've had this problem A LOT. I've been hospitalized three times for kidney infections. Its really terrible and no fun. Its so frequent that I've even stopped taking antibiotics unless I'm running a high fever.

Nekhbet
08-22-2007, 04:14 AM
:o Sonya. That would be horrible. So I take it that the steps you are taking (cranberry juice etc) are helping even with the bacteria negative episodes?

Newyorkgirl- that sounds terrible. Is that due to resistance? Like- you might need to have them work if it gets worse? It is terrible when it gets to that stage :( {{{hugz}}}

IloveHistory
08-22-2007, 10:11 AM
Hi!

I do have Interstitial Cystitis (perhaps this could be causing your guys' symptoms?), but I always have this problem where I feel like I have a U.T.I. and so I go and see the doctor, but often, they don't find anything when my urine is sent away to the lab. for a culture (even though they can find an infection with the dipstick) or there is nothing when they dip the stick in! :x It is just SO embarrassing! :oops:

Keep well and God bless! :)

the_librarian
08-22-2007, 10:27 AM
Ok, I have a related question. (I think) I just set up an appointment with my GP because I get these freaky episodes where I get flush and feel like I'm going to wet myself. I know that sounds crazy and REALLY embarrassing, but it happens. I've never actually wet myself nor do I think I would, but if I go to the bathroom nothing happens. Have you ever had a CAT scan? Do you know how the iv liquid makes you feel? It is EXACTLY like that. (Seriously, I can't believe I'm writing this, but you guys are always so great) I've not had a kidney/bladder/ut infection since I was little so I don't really remember what any of those feel like, but this definitely seems to be bladder/ut related. Any ideas?

chonea
08-22-2007, 02:08 PM
I don't have a Dx right now, but suspect Lupus. Anyway...

Over the past few years I have gone in several times with urinary pain and they always have found blood in my urine but only twice have they found bacteria.

I have always found that very weird and concerning. Interesting to see more of you here with that experience.

SonyaLA
08-22-2007, 02:30 PM
Nekhbet,

I do use cranberry juice, and lots and lots of water. The OTC meds help some too. Uristat tablets help with the pain. My gyn told me that it was not unusual for UTI's to come back negative for some people. I actually had never had a positive test until I had been on prenidsone for a year or so... but unfortunately, by that time it was in the kidneys, and I had blood in the urine. Nothing but bed rest and antibiotics for that one.


librarian,

that does sound familiar to me... usually with lower back pain though. I'm often feeling that flushed, loss of control feeling when I have a flare coming on.

Sonya

Nekhbet
08-23-2007, 03:28 AM
Ugh I lost my reply. Take 2..

Librarian- Could it be panic attacks- they make me feel like jelly and are definatly freeky. I wouldn't be surprised if many of us here have that with the fear of flares, fear of loss of control, and the avoidance behaviours would be quite prevelent. I hope your GPs has some answers for you.

Ilovehistory- {{hugz}} I would see what they are finding on the dipstick. It could be an indication of something else. UTIs suck..

me: yep- now I have a couple of ulcers in my mouth. I do have some great teathing gel from the hospital with helps though.

IloveHistory
08-23-2007, 05:57 AM
Hi Nekhbet!

Thanks very much for your response and advice! :)

Keep well! :)

the_librarian
08-23-2007, 06:25 AM
I thought they might be panic attacks too, but they continued while I was on Lexapro (I'm off now) and with Clonopin and with Trazadone. I don't know what they are. I have an appointment on Wednesday, I'll let you guys know the results...

Nekhbet
08-27-2007, 02:57 AM
Meds did little for my panic attacks until I found the right ones. For me it was antipsychotics (seroquel)- it is being prescribed more and more as an off label med for anxiety and bipolar by psychietrists (sp?). You just take "subthereputic doses" and for me it was like magic - it worked better then benzos and are not addictive to boot.

But, the only thing that is really going to work in the end is some form of CBT in the end though- cognative behaviour therepy. Basically you have to identify your fear and have graduated exposure to it.

One of the causes for me was not being able to feel anger (as it was such a "bad" emotion i suppressed it so far that I didn't even feel it myself- unless it was really explosive). I had to learn when I was annoyed and deal with it.

But, I hope whatever the problem is- that you get your answers. GL

icegurl121691
08-31-2007, 04:44 AM
i had the same problem with burning and getting the urge 2 go even when my bladder isnt even half way full the burning went away on its own with out antibiotics im nrevous cause about a month ago there was a bump there that hurt and im not sure if its an ulcer or not

the_librarian
08-31-2007, 01:22 PM
My GP is sending me to a urologist. He said the feeling like I'm going to lose bladder control does not sound like a panic attack to him. He thinks I may be having bladder spasms. He is setting up an appointment...I will let you all know how that turns out. I've not had any organ involvement yet, so I'm hoping that will remain true...

Thanks for all of your support & input!!

AB

the_librarian
09-17-2007, 05:31 PM
Hello, all. I wanted to give an update on this...

I saw the urologist last week. He is concerned and said that these symptoms were atypical (Woohoo, I love being atypical!!!) He wants to do a cystoscopy to ensure that there are no abnormalities in my bladder. So I should have results of that by the end of next week. (Is the fact that he was willing to wait two weeks a good sign, i.e. unconcerned? or a bad sign, i.e. two weeks is pretty fast for something like this?) I'm taking it as positive. I will get back to you all after the results.

Nekhbet
09-18-2007, 01:10 AM
{{hugz}} sending you lots of positive vibes for a good result.

Saysusie
09-18-2007, 07:17 AM
Wishing you the very best. We'll be waiting to hear about your results :lol:

Saysusie

Razzleberry
09-19-2007, 07:02 AM
UTIs are how my battle with Lupus first presented and I would have positive UTI tests and negative ones ...same symptoms. I was sent to a gyne-urologist who was little help and claimed I just needed more kegels etc and sent me to a PT. During one visit at the gyne-urologist I was absolutley covered in a weird rash and she didn't even tumble to that as a lupus possibilitiy. I think all specialists seeing women presenting with obvious lupus symptoms should be trained to think of and test for lupus. In my case it took hospitalization with a raging UTI and unbreaking very high fever to get their attention. It shouldn't be that hard!

I hope you're OK.

the_librarian
09-19-2007, 07:21 AM
Such support! You guys are just great.

IloveHistory
09-28-2007, 03:00 PM
Hi The_Librarian!

Good luck for your Cytoscopy and the results! I will be praying for you!

Keep well and God bless! :)

the_librarian
09-28-2007, 03:11 PM
History -

I'm so glad you wrote! I actually had the cystoscopy on Tuesday and everything inside my bladder looks good (TMI?) Anyway, they have scheduled me for a CT Scan for next Tuesday (Oct 2) to see if it is anything outside of the bladder causing the problems. I'm feeling pretty good, though, so no worries...

Hope you are all well!

AB

Nekhbet
09-30-2007, 05:31 AM
:multi: - sounds good. Hoping your test results continue to be good..

Gisèle
10-09-2007, 10:06 PM
Hi everyone! I really hope I am not to late to share this information. I haven't been diagnosed with lupus or anything like that yet(have DR appt. tomorrow), but I have symptoms that would suggest an autoimmune disorder. I want to share some information with you on the urinary problem. About five years ago, I had all the symptoms of a UTI, I went to so many doctors and many ER rooms, and all my urinalysis and cultures came back negative, although a few times I would have WBCs in my urine and some protein. Almost every doctor told me it was in my mind because they couldn't find anything. I was on so many antibiotics, none did anything. I gave up and just lived with it for about a month, then a went to another urologist at the time when I started noticing it was getting better. The first thing he suggested was I could have urethritis(inflammation of the urethra), and the reason why all cultures are coming back normal is because the urine is not infected/affected, it's the urethra, which brings back normal results. After countless doctors, he was the ONLY ONE who thought of urethritis. He suggested a cystoscopy, but didn't want to put me through it since I was getting better. After that, it mysteriously went away. Now, fast forward to now, I have the same symptoms. I went immediately to my urologist(same one who suggested urethritis), he did a CT scan, saw bladder wall thickening(possible cysitis, inflammation of bladder wall), and ended up doing a cystoscopy on me. During the cystoscopy, he saw that my urethra was very inflamed and my bladder was a little inflamed. So, I got a diagnosis of urethritis(inflammation of urethra.) He put me on levaquin for a month, and it's been three weeks since I have been on it and it's done NOTHING, no improvement, which is odd, because levaquin is a major antibiotic. Along with other symptoms and this inflammation not going away, I am seeing the DR tomorrow to get tested for any autoimmune disorders. When asked the urologist what caused this urethritis(usually get urethritis by having sex, but I am a virgin, sorry if TMI), he was honest and said he didn't know. When asked about seeing a rheumatologist, he said to see what the antibiotics do first.
I wanted to share this story with you all because I went through so many doctors and no answer besides it's in my mind, and NOT ONE doctor, except my current urologist, even considered urethritis. So next time at your doctor, mention urethritis, and have them check to see if you do have inflammation in your urethra, and I have come to know that inflammation is a big sign in lupus patients. I just went through so much with these doctors over something so simple and it lost my hope in most doctors from this experience, so I wanted to share this story to help others avoid the terrible runaround I got. I hope you all feel better soon!!

IloveHistory
10-11-2007, 04:26 PM
Hi!

A.B.: I'm SO glad to hear that! :) Let me know how the C.T. Scan goes/went! By the way, I want to be a Paediatric Neurosurgeon when I grow-up and my walls are covered with some pretty graphic pictures, so believe me, nothing is 'too much information'! :wink: :lol:

Gisele: Thank you VERY much for sharing that useful information with us! :)

Keep well and God bless! :)

aggscott
10-14-2007, 03:23 PM
Wow what a topic I have to say..I've had UTI's pretty chronic from the time I was 17, I'm 34 now. Strange thing is that the times I went to the doctor and had a test nothing showed up-no bacteria-no nothing.. but I had pain so bad. They would give me the meds and after a while they didn't work anymore, I had to try stronger meds. Now my doctor just calls the meds in for me-I don't know if that's good or bad but it's the way it is for now...
To this day, I still don't have an answer-If my husband and I have sex, I get one-If I wash wrong in the shower-I get one. I can breath wrong and get one I swear.. :?

I've tried every possible way too for me not to get one, it doesn't work. So if anyone finds out any answers, please post them here..

It would be so nice to go a few months without having one...

Aggie