owieeeeeee

[windwalker]

I started elmiron and elavil back in May, and felt better by the next day, however, I have been slowly getting back the bladder frequency/urgency, well last night it got so bad that I sat on the toilet doing nothing for 45 minutes feeling like something wanted to come out of the urethra but wouldnt. I have had urethral burning for 18 yrs. but this was wayyy different. I had gone to the bathroom around 9:30 and right after the bladder started w/the gotta go feeling then the urethra started the burn then turned into this horrific pain. I was able to get into a tub for 20 minutes and noticed the bladder was starting to give me a slight break, instead of constantly feeling I had to go, it would stop n start over n over but heres the thing, my bladder would spasm, then as soon as it would stop, the urethra would get a quick jolt of pain. The spasming started to come back when I was taken off the elmiron over a month ago. I got back on it, and nothing has gotten better, its progressively getting worse. I take the elavil an hour before I want to go to bed (about 10:00pm) but by 11 pm I am having bladder spasms galore. The uro suggested DMSO when he spoke to me just before my cysto under anest. on Aug.12th, (I took all the cipro I was prescribed after also) but I am certain he forgot it was me that was hyperventilating and crying uncontrollably just from the pediatric cath. being inserted for a urodynamics (which could not be done for obvious reasons.). I phoned his office and hes not in until next week and the doc thats there got to work late and although the gal on the phone is going to give him my info, she has no idea when he will (or may) call. I took half a flexeril last night and it knocked me out and I was fine at 7 this morning but from 10 this morning to now I have that constant must go feeling. Any suggestions? Oh let me add something, I noticed when I get the urethral burn and including the pain from yesterday, when I try to get up from the toilet, it feels like some urine is trying to come out but none does.

[Melanie]

It sounds to me like either a really bad flare or possibly a UTI. Can you go into Dr for a urine test (just to make sure about possible infection)?

Do you have pyridium for burning? Pyridium plus can help with burning and spasms too. I hope you feel better soon!

[windwalker]

Hi Melanie, the Dr. offices are closed now so I cant get a urine test. The uro hasnt called back yet and lord knows if he will. Most of the time pyridium works for the urethral burning, I even have the pyridium plus and it doesnt do a thing for the bladder. Just sittin here trying to preoccupy myself and drinkin water, yippeee ;)

[Melanie]

hi again,
It might be worth getting some of those urine test strips from the local drug store. I keep a small supply of them in my medicine cabinet for times like these. If it comes up positive, you could call your Drs office or go to ER or wherever you can get evening/wknd care for antibiotic.
We are all a little different, but if I had the symptoms you described, I'm pretty sure it'd be a UTI for me. I hope you get some relief soon!
Do you have any other meds, treatments, etc in your IC survival kit? Also, try to find one of Katrina's posts... she always has the best tips for getting thru flares!

[windwalker]

Yea, I am thinking of sending my hubby up to get some of the strips. I went through something near this a little while back, did the urine test at the uros it came up w/nitrates but the culture came up clean, I did three days of cipro-the big 1,000 mg pill and it helped for a little bit. only other thing I have is some flexeril which even a quarter of one knocks me out. May not be a bad thing tho huh. I may use a hot water bottle and try a castor oil pack.
Thanks,
Dawn

[jen_dahling]

Sorry you are having such a hard time!
I hope you feel better soon and can get some rest.
:grouphug:

[kelly McC]

Hope you hear back from the doctor soon.. Huggs and hope your feeling better soon.
Kelly

[windwalker]

Thanks everyone. :)

[vm]

Aw, I hope you feel better soon. I usually go to an urgent care type place if a UTI type flare hits me on the weekends. Do you have one nearby?

One word about the home test kits ---- twice I have used them and the test said I did not have a UTI, but both times I really did have one. So, if it comes up negative and you still feel crappy it's worth getting a UA and culture done.

[windwalker]

I don't know if I have one near or where one is for my insurance. I am sure theres a number on the back of my ins. card. At this exact moment, its tolerable, but if it gets worse, I think I will call the number on my card. Thanks for the idea, I didnt even think of that, but then when you feel lousy, its hard to think at all. ;)

[donutgirl]

Windwalker...You poor girl....my bladder spasms horribly like that just when I'm in a bad flare. The hot baths usually do help some and heat, heat & more heat. Think about camping out on your uro's steps on Mon. AM if you have to and take the flexeril until then. My dr. prescribed a suppository for bladder spasms because they are so horrific w/ me. They are called B&O suppositories and have morphine in them. It's worth asking for. Please, take care.

DIANE

[windwalker]

Thanks Diane, writing the B&O down. Also have that I want to try the Atarax. I asked my uro about that just before he suggested the interstim and/or the DMSO, neither of which I want to try right now. Just gonna have to tell him I really want to try it, its my cash and I have researched quite a bit. It wont hurt to try. I will be taking that flexeril for sure after tonight's bath. Then I wont feel a thing at least until morning. Hate to do that because I will be groggy all day tomorrow but I have to weigh the pro's and con's here and no pain wins.

[kadi]

Since my doctor is 1-1/2 hours away, if I might have a UTI, I call the nurses at his office & they FAX an order (RUSH order or it will take 3-4 days to come back) to a laboratory very close to home...

[Dixiefireball]

Oh hon i'm sorry to hear you are feeling so badly. I went to the doctor today and have yet another UTI.

My uro doesn't personally Like the uti kits you can get from the drugstore because they don't always pick up all the batera but hopefully it will pick up your infection if you have one.
I :pray: your doctor calls you back real soon and give you some answers
sending you hugs and prayers
Rhonda
p.s please let us know how your doing.

[Katrina]

So sorry you are suffering so severly Windwalker, I hope your doctor can help you. Are you on any antispasmodics? Sounds to me like you should give a few a try.

I am saying a prayer for you :pray:

:kiss: :kiss: :kiss:

[windwalker]

Hi all, I am slightly better today, eating really bland, brown rice and a bowl of lettuce so far lol. Its more tolerable but still bothering me. The doc never called. That just peeves me off. I know he was busy but I wouldn't have cared if he called me at 4 a.m. I took half of a flexeril and slept quite a bit. It's funny, I am still groggy today. Well, I am going to go drink more water and watch MASH reruns on t.v. I will be calling the uro's office Monday if I am feeling the same as today. Thanks for all your well wishes and support.
Dawn

[YankeeCandle224]

Hi,

You poor thing. I didnt see this thread the other day when I replied to you. You have been thru enough havent you???

Did you get the strips to see if you did have a UTI?

I understand the sensations you describe so well and have TOTAL empathy, and sympathy too for that matter, for you. I have those symptoms a lot. Just KNOW I have to pee, sit there, and cant do anything but burn and spasm, when I stand up it feels like gravity or something wants to let the urine go, but I get a teaspoon or two total from 45 minutes of sitting sometimes. Its awful. I try to drink a lot of water too, but then I REALLY have to go 100 times a day. Dehydrating myself isnt good either, but I cant find a happy medium.


None of this is fun, as I'm finding out quickly. You are just so miserable so much of the time and I feel so bad for you. At least I get a break every now and then from the pain and frequency.

How are you feeling today?

Hugs, Sandy

[windwalker]

Hi Sandy, I am feeling better today, not 100% but better, of course the uro calls today while I was out taking the dog for his shots, they just "know" when I am not home lol. His msg basically said to come in on my scheduled appt date, that we went over some things to try if its real bad (dmso which theres no way we are doing and interstim which I am not ready to try because theres other meds like Atarax to try before I put a machine in me) and to call if I am still feeing bad. Each day feels better than the last so I dont think I need to phone him again. I want to try the Atarax, but since I am feeling better, I am thinking of waiting for my appt to retalk to him about it. Its funny, I am sitting here trying to decide to call him or not, like I said I feel better and I wouldnt normally call him feeling like I do now, lol I do this all the time lol. Ok going to scoot for now, thanks for checking on me!
Dawn

[donutgirl]

Dawn, so glad to hear you are feeling better. Unfortunately, I've been suffering all day today w/ the same problem. I have 2 vicodin, a morphine suppository and pyridium plus in me...I've had the hot bath and the heating pad on, but no help as of yet. I'm hoping I just pass out soon even if I have to sleep right here at the computer. Just wanted to check on you.

DIANE

[windwalker]

Oh, Diane I am so sorry you feel so bad right now. I hope you are feeling some kind of relief now. I am ok here, I started work again today (got a job as a lunch mom) and it took my mind off the bladder a lot. More or less, I mainly have my typical urethral burn and frequency but everything else has subsided. Diane, try to rest as much as possible. Have you tried any baking soda and water? Sometimes the alkalizing effect that has can help (tastes awful but worth it). Let me know how u r ok?!?
Dawn