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Avatar universal

I'm miserable and I don't get it?

Hi All,
If you have followed my last few posts I have had difficulty peeing, I feel like I am not emptying my bladder properly.  Well I developed what my Dr thought and I thought was a urinary tract infection.  Protien, leuckocytes and blood in my pee.  Well I didn't respond to antibiotics so had second lot and I thought I was getting better but then come back worse than ever so Dr re tested new sample of urine (now 14 days later) and yep protien, blood and whiteblood cells etc... so he sent my sample off to pathology for further testing to see what but it would grow to work out how best to treat me.. I am not responding to the antibiotics...

I DIDN"T GROW ANYTHING at the lab!  My Dr thinks the whole thing is neurological. This has depressed me, I feel exhausted from the burning and I was looking forward to resolving it with some antibiotics.  I feel like someone has placed scalding water or a hot iron on my perineum area and it won't go away.. my joy spots aren't bringing me too much joy! I can't sleep with the pain.  I am going to go back on the gabapentin.  I have had numbness there before but not burning like this and it's burning up my back too but I thought that must have been from my kidneys but the DR said my kidneys were fine?

I thought the infection was excacerbating my symptoms and now I think well my infection was a neuro symptom so I am prob having another attack!  I have never experienced burning like this... it won't let up. I have had some twitching down there and i feel it is working it's way up too my number two area.. I am so miserable.  I just thought it could be fixed with antibiotics...now I wonder if it is another attack as I had had some other symptoms too.

BUt why if I have protien, blood etc. why is it not an infection.. i thought protien meant your kidneys are not working.

Also has anyone else with MS or TM experienced this type of burning as part of their attacks.

I don't normally get miserable but thanks in advance, even coping strategies would be good as I can't function like this.

Cheers,
Udkas
14 Responses
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Avatar universal
Thanks again so much for your cyber hugs etc.  I am still burning!  I rang my neurologist but spoke to his nurse instead and she relayed what was happening to him, he has upped my gabapentin to 1800mg a day, but still not working yet.  He believes it is neurological because I have had bad numbness and nerve pain in that area before.  My back is burning up to my bra strap and the burning is in my privates and right down my legs... I have had enough.

How long does it take for the Gabapentin to kick in?
Udkas.
Helpful - 0
Avatar universal
Please feel better and I pray you get relief.                         Linda
Helpful - 0
848718 tn?1257138801
So sorry to hear you're still suffering. I hope you're able to get in to your neuro tomorrow and he is able to do something for you right away!!

I'll be thinking of you tomorrow. Please update us on how you're feeling and what your neuro says...

Feel better!

SM
Helpful - 0
Avatar universal
Thank you so much for your well wishes and hugs.  I am still burning.  I  have taken the gabapentin, tried jell, I even went to another GP who tried to call my neuro but he had gone home for the day as she was concerned, I now think I am in another flare.

Both Doctors think my pain is of neurological orgin. I am having other neuro symptoms too but I thought it was the infection that was causing my problems.  I still wonder if I do have some type of infection.  The lady Dr I went to said that females can get basically rubbish in their wee... I am still on the 3rd lot of antibiotics as well.

I have stagger started back on the Gabapentin so I guess it will take a few  days to kick in.  I am at the stage where I think I will ring my neuro on Monday but there is part of me that is afraid.

My mood has picked up because I just can't stay sad long but the pain is like you have burnt that area and it won't stop burning, why can't it be somewhere else like my foot or something (NOT THERE).  Has anyone else had this problem?

Thanks thanks thanks,
Will let you know if I go to my neuro or what happens.. the lady dr said my bladder was spastic..?
Cheers Udkas
Helpful - 0
645390 tn?1338555377
Sounds dreadful what you have been going through. I am so sorry to hear of all these awful symptoms you are having.

Thinking of you,

Michelle
Helpful - 0
620877 tn?1282764097
I am so sorry that you are going through this!  Hope you get some relief, however necessary!

Hugs,
Chrisy
Helpful - 0
634733 tn?1316625992
Oh dear Just sending lots of hugs - feel better soon.

(((((((hugs))))))))
Pat
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Avatar universal
Sorry you are going through this, I hope this other dr can do something to give you some relief.  I'll be praying for better days for you......hugs, doni
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359574 tn?1328360424
I ditto what Terry said.
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648910 tn?1290663083
I just wanted to say I hope you feel better soon.  terry
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Avatar universal
I had a spell two years ago of regular (every 3-4 months) UTIs.  Always presented just as you describe--visible blood, posi. for protien, leuckocytes and blood, also right flank pain.  When they cultured--NADA!!  Luckily, I responded to the antibiotics, so I don't really care if they grew anything or not, it was clear to me that I had an infection (anyone LOOKING at my sample would be sure there was something screwy going on!)

I did have a doctor tell me that the medium they use to culture the sample doesn't grow everything.  So you could just have a more rare type of bacteria.  I would definitely see another doctor about this.  As Quix said, it could be viral, but if you started to respond to the antibiotics, and then got worse, you could just need a stronger antibiotic.

Do you have a fever with this?  UTIs shouldn't be ignored--they can cause serious systemic illness.  

I hope you get some relief soon.  In the US pyridium is available over the counter, so you may not need to see your doctor for that one.

Stephanie
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Avatar universal
Thank you so much, you don't know how much your advice means to me today... I am typing with tears dripping on the keyboard...lol i come home from work sick as I couldn't concentrate...

I have just booked myself into another Dr to see if she can be more helpful than my regular,  another GP as I am desperate.. i don't think I have ever been this desperate...I thought perhaps it could be coming from my vagina but I prob clutching at straws here.

I'm not convinced it's neurological either but I do think it is making my neuro symptoms worse....but who knows!  but i guess the protien and blood shouldnt be there and what about the leucytes or whatever they are called?  Surely something is up.

I will go off line now to the chemist and try and buy the products you have suggested as it is very, very painful, funny tho I thought I was numb down there....

I thought he would send me for a bladder scan or to a gyne or urologist or someone who can help me...

Or even Perhaps a pedatrician... I know of a good one :-)

Thanks Quix... from the bottom of my heart..
Helpful - 0
405614 tn?1329144114
My uro-gynecologist gave me some lidocaine jelly for use in that area; maybe that would help.  My burning calmed down before I opened the tube of jelly, so I don't know if it worked for me.

I'm sorry you're so miserable.  I hope help is on the way soon.

Hugs,

Kathy
Helpful - 0
147426 tn?1317265632
My poor dear!!!  The most miserable spot in the world to have severe pain.  Did your doc at least put you on a urinary anesthetic like pyridium (the stuff that changes your pee to bright orange?)  You have all the changes that go along with an infection so you clearly have some bad inflammation going on there.  When they test the urine, the test for blood is for red blood cells (actually for hemoglobin).  The test for protein will also pick up the albumin that is a major part of the serum (the clear liquid of blood that the red cells float in).  So, if you are bleeding the protein will be positive, even if the kidneys are working perfectly.

You might have had a viral infection of the bladder which will have all the symptoms and UA results of a bladder infection, but it won't respond to antibiotics.

I think an urgent referral to a urologist is in order.

When I had severe burning with infections I found that sitting in cool water was the best thing I could do.  Also ask if there is something you can take to help with the severe burning.  If this is a neurological problem from the MS, then of course the treatment is to treat the neuropathic pain, but with your findings of blood and pus in the urine, I am doubtful that it is a neuropathic pain.  Why ignore obvious signs of inflammation in the bladder (which MS doesn't cause) and blame something else for the pain?

You might also be able to use Lidocaine jelly to the perinuem and around your urethra to relieve some of the pain.  We would often do this with little girls, why not big girls?  We use Lidocaine mouthwash for severe sore throats.

Another idea is to use regular baby ointment on the other areas that are burning, like desitin or zinc oxide.  It's a mess, but I suspect you wouldn't care.

If numbing the areas doesn't work, then it would lend evidence that this is indeed, a neuropathic pain.

Hope this helps.

Quix
Helpful - 0
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