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Bladder question--What IS this???


DancingLight
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I am going a bit crazy from this symptom...mostly b/c it is interferring with my sleep.

I will try to describe it and keep this short (not my strong point!).

Once I wake up to pee for the first time at night, after about 4 hours sleep, then i can't fall back to sleep b/c i keep having to pee. sometimes i really do have to go, but sometimes i just feel like it...

Here's the part that is embarrassing and really annoying. It's as if once i pee that first time, my bladder is so irritated it won't calm down. I feel like there is pressure all the time pushing on the pelvic bone or something. and, it feels very irritated externally too...like the nerves are agitated.

I can't fall back to sleep b/c it literally makes me feel so agitated all over having that discomfort. it feels sort of like being aroused down there, but that isn't what is going on...it is coming from the bladder area...does this make any sense at all?

so, i toss and turn. it still feels that way throughout the day, but more tolerable, i guess b/c i am not trying to sleep!

i take ddavp and it is as if i am not even taking it. it is so strange. and once it starts to wear off (long before the next dose) i am so uncomfortable. and even after i take the dose in the morning, my bladder doesn't calm down, so i can't go back to sleep.

i guess i don't really know how to even desribe this!

has anyone else ever had a symptom like this???

i don't quite know who to call....what kind of doctor or what could be causing this...

any tips would help!

i don't feel like calling all sorts of male doctors and telling them my bladder feels "aroused!" he-he! :) hope that made you laugh! b/c i am trying to laugh at this!

my endo is not exactly very clued in about ddavp, pots or any of that so i don't know if i even want to go back. the urologist i saw sent me to the endo b/c he was completely baffled. but this is a new symptom. and it is happening every day...

thanks for any advice/tips/insight! this symptom is unbeleivably annoying....i have no idea why!

emily

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Hi Emily,

I periodically have the same problem and it is irritating and it interferes with everything!!! When I am check for a bladder/UT infections it does not show anything but the symptoms are so bothersome!!

At the time I had a DO whose sister was being treated for a condition like this one...in which the lining of the bladder becomes irritated. So he put me on the medication that her GYNO used..and within 24 hours the symptoms were relieved. I stayed on for a while and will use it when the symptoms begin again...after being checked for an infection. The condition is interstitial cystitis...and the medicine is called Elmiron.

Normally, a doctor would want to do some sort of scope procedure to look at the lining of the bladder but my doctor was aware of all my strange symptoms and said, 'let's try it.' If I needed to stay on it for long periods of time I would want to confirm the diagnosis but since it stop the symptoms within 24 hours...I was okay with that...I have only had to take it once again and that was 2 years later.

I think everything about us is sensitive including the lining of our bladders....Have you rules out an infection? If so, then maybe talk to GYN aout interstitial cysitis..irriation to the lining of the bladder. I really do emphazise...I felt like I had symptoms of an infection all the time and getting no relief and NO HELP.

I hope you get some relief soon!!! Karen

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i go through this every night. it drives me crazy. i do have interstitial cystitis, which is a chronic inflammation of the lining of the bladder. i've had a few cystoscopies. i also have a very tight urethra, which makes it hard for the urine to pass, so i pee like an 80 year old man with a prostate the size of a football. lol that's what i tell my doctors i have. bph. just dribble away. anyway, i can't tolerate the medicine, so just have to deal with it. sorry anyone else has to go through it, as it is so annoying. and mine seldom bothers me in the daytime either. i also will sometimes have a bladder spasm AFTER i've voided and will have a tiny little spurt of urine come out. that is also quite fun. it's not even a sneeze or cough thing. it's after i've emptied it. ahhh i love my body..... morgan :)

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Emily,

I'm sorry you are going through so much discomfort............

I wish Doctors could get more to the underlying causes of these problems we have instead of medicating them. Don't get me wrong====we need medications for many problems, but not knowing the cause often makes us wonder if we are on the right meds. Lorrell, in your case, I think you were pretty lucky that the medication worked so well for you. Sometime's that's one of the only ways to tell is by trying to see if a certain medication works.

Emily, I had a mild bladder infection once in my life. That was when I was about 27 years old. It was only a mild infection that cleared up on it's own. My point is--------it was one of the worst discomforts I have ever felt. I can only imagine what you are going through! Then for it to mess up your sleep------well---------that is our only recovery-----SLEEP AND REST..........

My mother in law always calls it her----"DOWN BELOW PROBLEMS"...LOL

I do have more unrinary frenquency------------but no burining or discomfort. If I did---------look out-----------i'm the crab from ****. I know I would not do well with this as I did not handle the one infection when I was 27 very well. WE were on a trip to Florida in the gulf------wrecked my trip---at least the last half of the trip. Everyone called me a winer. That's one clue showing you how I handle bladder issues. Guess it's a good thing I don't have them--------because I would not be good to live with.

On the onther hand, I must say with all the other junk I have going on, i'm not too hard to live with----LOL Just some crabbiness in short spurt's---------nothing a little chocolate won't fix-----------------LOL

I hope you get this under control soon... I see you are already consulted with a Urologist. It seems he/she didn't help you much. I would think a urologist would be someone that could help. Maybe you should see another one who won't be so dismissive.

Julie :0)

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Of course you need to make sure you don't have an actual infection.

However, I too, have had interstitial cyctitis symptoms. I had a run of it for 10 years solid! Nothing helped, except for getting off Coegard. Then my bladder healed and it was wonderful. Then by experimenting with beta blockers, it became very clear that most of them do this to me.

I am free of symptoms now most of the time. Two things really help . . . making sure drugs aren't doing it to the bladder, and avoid eating foods that irritate a bladder whose lining is irritated.

Avoid all acid foods, this includes tomatoes (except for the yellow ones), catsup, any tomato sauces, all citrus, except Minute Maid low-acid frozen OJ concentrate. Do not eat ANY fruits except for: watermelon, blueberries, yellow apples, and pears. Avoid all nuts and chocolate and cafine. Most vegetables and meat are okay, as long as they are not spiced with anything. Also avoid onions. Believe me, it is a boring bland diet.

If you can stick to avoiding the above foods for about 2 weeks, the lining will begin to heal, that is, if you are not taking a med that is irritating it.

After the lining is healed, you can add back the foods you are missing one at a time.

Good luck.

Let me know if you try this and if it works.

Michigan Jan

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Here's what I'd advise:

If this is a brand new symptom, you should first make sure that you don't have a bladder infection. (Your symptoms do sound either like cystitis or bladder infection, by the way.) I had a bladder infection a couple weeks ago; I walked into my gynecologist's office (w/out appointment...) and they had me pee in a cup and had the results--and a prescription for antibiotics--in minutes. It's really really important you rule out bladder infection; if you ignore it, the infection can easily spread to your kidneys and then you've got real problems!

In the meantime, when I have periodic bouts of cystitis (need to urinate, feeling burny down there afterwards, and all the rest you describe), I take an over the counter meds that work beautifully (and turn your pee a lovely shade of orange, so wear a minipad :) ): prodium, AZO standard, and there's one more I can't remember. You can ask the pharmacist if you can't find on the shelf--typically it's where the monistat etc is ... anything with phenazopyridine hydrochloride. It stops the spasms and is truly a miracle worker...you can take before bed and I swear you'll sleep through the night (or if you get up once, you own't have the ongoing discomfort). No side effects except relief!

Good luck!

Merrill

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Emily,

This is weird but I was also going to post about baldder problems. I have developed some bladder problems out of nowhere. It started a few weeks ago, it burned before, during and after I urinated. I had a UA which showed no infection only lots of blood.

2 repeat UA's done several days later showed no blood although I continued to have that full, burning and uncomfotable feeling. The feeling went away for a while but came back yesterday. It almost feels like I have a catheter in that has not been emptied.

Anyhow, I think I'm going to try to see a urologist. You might also want to consider that.

For those of you with interstitial cystitis, can blood in the urine be one of the symptoms?

GayleP

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gayle, blood in the urine is a cardinal symptom of ic. it's usually only mild however. i have had hematuria or blood in my urine for 20 years. you can't see it, only find it on a dip. so if you are passing large amounts of blood in your urine, you need to see someone. soon. i agree that a bladder infection needs to be ruled out, but they tend to have an acute onset, it doesn't matter whether it's day or nite, and you feel very sick from them as a rule. when i worked for an ob/gyn we had walkins every single day with uti's and these gals were so miserable, and usually had obvious blood in the urine. it's never a bad idea if you have chronic symptoms to get a cystoscopy and have a urologist look at the bladder wall. and your urethra and also to see if you are actually retaining more urine than normal. it is not a very comfortable procedure, however they do anesthetize the urethra. it only takes a few minutes and is done in their office. they can tell a whole lot by one look at what's going on. i know, i know one more barbaric thing. :) but it can be something that can be serious. ic usually can be treated and they have come up with a lot of new things to treat it. so it's worth a look, so to speak. morgan

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Dancing Light, I know exactly what you are describing since I have had many bouts. First off, of course, you rule out bladder infection (as said above). My diagnosis is interstitial cystitis. Since I have had IC for many years now, I will tell you what works for discomfort and what makes its worse for me.

What makes it worse: sex (bummer), acid foods such as spaghetti sauce, vinegar, there's an entire list, chocolate (bummer), alcohol, yogurt, can't remember entire list.

What works for temporary relief: those bladder analgesics (pain killers) used for a bladder infection, drinking 1/2 tsp baking soda in 1/2 glass of water (removes the acid in your urine), wear looser clothing, remove certain foods from the diet that "burn" down there.

Hope that helps.

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Thanks Morgan..

I could see the blood first night I had symptoms, but when I went in for the UA the next morning there was still blood in the urine but not visable.

I was sure I had an infection and was really concerned when they only found blood. At least an infection would have explained the blood.

Like Emily, I am having a lot discomfort so I think you're right, a cystescope (sp) might be in order. Now I have to try to get a referral to a urologist.

Anyhow, thanks again.

GayleP

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you all are sooo wonderful!!!

can i tell you how happy i was to hear all of your helpful tips and advice? i was so relieved to hear that you knew what i was talking about. i was feeling so embarrassed about it all...i don't know why!

i really appreciate all of the responses...they are all great...

a couple of questions...

which bladder analgesics do you take? has anyone had negative side effects from them?

has anyone ever heard of using lidocaine as a topical anesthetic on the tip of the (don't know the anatomy term) is the urethra? right where the pee comes out? (man, i am laughing at my own idiocy here...). anyway, i read about using that for irritable bladder, but it was from a more "alternative perspective"...it sounds like a good idea though, b/c what it is supposed to do is sort of take away that urgency you feel when your bladder isn't full yet. and help you to go longer without having to go then. just a thought...always am looking for non-systemic options. do you think a doctor would go for it? hmmm....

i think that's it...

just to rule out the bladder infection if i am still waking up all morning and night tonight i will just try and go to the doctor and pee in a cup and rule it out.

that way, then i can have the evidence that i might need to look into IC.

i don't eat much acidic food at all actually. only a little bit...but will watch it more. i only eat a little chocolate every once in a while, a teeny caffeine every once in a while. not much with vinegar in it...maybe a little mayo. and only just ate a couple of things with tomatoes recently...b/c i thought maybe they were one of my food triggers (maybe that is my problem!)...

also, have been taking baths with some different fun bubbly and smelly stuff, which could do it...

oh, morgan/michigan jan...do you think the clonidine could be contributing?

michigan jan...i hope it is not the corgard b/c i have tried to go off of it a zillion times (there i go with that word again) and i can't at all. i literally cannot be off of it and have not been able to tolearate another bb either...so it is a tough one! but, i think i will stay away from feeling like i am going to die and stick with an irritated bladder... :)

oh well. hey i finally used one of those smilies in my post. cool.

anyway, thanks all of you...i got responses from so many of you who i trust and love to hear your tips! gayle...i hope you get some relief too!!!! and i am sorry that so many of the rest of you struggle with the same sort of symptoms...if it's not one thing it's another isn't it? keep us posted!

emily

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Bubble bath!? :o BAD BAD BAD for bladder infections! :) By the way - don't use AZO or any of the other OTC treatments before going to pee in a cup at the doctor's office - they will seriously mess up test results! (but OH how that hurts!) My sister-in-law; who is a physician's assistant. was visiting us a few years ago and I noticed she kept running to the bathroom. I asked her if she had a UTI. She said she didn't know; what does it feel like? I told her and she said that must be her problem. She went to the urgent care and sure enough, that was it. She is now very sympathetic to her female patients with these problems.

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I agree with all of you and know exactly what you talking about. I however have found help for this problem. I saw an urologist about 3 years ago. I was having bladder and kidney infects at least 2 a year my whole life. I was constantly in the bathroom and towards the end I was battling to sleep due to my bathroom needs. What we found out is that my bladder does not empty and certain muscles are not working normally. He refused to give me medication and taught me to live with the problem. He stretched my bladder pipe in theatre and WHAT A DIFFERENCE. I have not had an infection since. I go to the bathroom less and can hold it longer. But when I got to go I HAVE GOT TO GO. The pinching has worn off a bit. But it is worth it. It was very painful but worth it. When my problem returns to that extent I will go for it again.

:)

My urologist said I have to go to the bathroom every hour. Maximum holding period is 2 hours. The only exception would be sleeping. Like we can sleep normally any way. I never sleep through; my body always gives me a reason to get up. Bladder, heart, water.... what ever it up to lately.

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Has anyone taken Macrobid for a UTI??

just wanted to check before i start it...

i tried to get the drs. office to let me pee in a cup and they said, no you can take the antibiotic first and then see if you feel better...

i was a bit frustrated. but i am also desparate...and i had someone who could get the script for me, and i didn't know how i was going to get to the dr....

i am so irritated though that i actually asked in two different phone calls to the office about peeing in a cup first...before getting the antibiotic and they said no!

and they wonder why antibiotics are over-used...

sorry, i am so tired from being up all night peeing that i am so exhausted. and cranky.

and, i am baffled that they turn you down when you actually ASK to pee in a cup!!! aargh.

i just don't have the energy today to be more aggressive...is that terrible?

should i wait to start the med until i go to the gyn or something instead and get a test done????

ugh...

emily

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Emily,

That is quite odd ( and frustrating for you) that they would have you take an antibiotic without doing a UA first. Especially because they can order the test stat and get you the results in less than an hour. They would still have to culture it but at least they could tell you if you had an infection.

I have taken Macrobid before and didn't do well on it ( felt weird) but don't go by my assessment, I feel weird on everything. You might do fine on it.

I had a UA done this morning and apparently this time I have an infection, no blood. Two weeks ago I had blood and no infection. I'm just waiting to find out what antibiotic I will have to take, I'm hoping it's Ceftin because I can't take anything else.

Hope you feel better.

GayleP

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Emily, Macrobid is the antibiotic that I took a few weeks ago for my bladder infection. I agree--it's totally weird that they would have you take antibiotics without testing to confirm a bacterial infection. Oy.

However, I'll just add that if you've been that uncomfortable for a couple days/nights running, and if it's really burning bad and the need to go is very intense, it's probable that you do have an infection. I'd say go ahead and take the med (and take one of those OTC urinary tract analgesics for gosh-sakes already, would ya? :) to get yer fine self outa pain!) and don't worry about side effects. Anyway, once you start taking something, you'll feel better in a couple doses--but keep taking the rest of the prescription.

be well,

m

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Emily,

If you end up doing a UA you might want to try to give them urine from when you first wake up. For people like us who drink a lot it's better when the urine is more concentrated.

That might explain why only blood and no infection showed up in my UA a few weeks ago. By the time I did the UA my urine was really diluted from all the fluids I consume and it was only 9.00 am. The lab commented on how diluted it was.

This time I took a speciman cup home and peed when I first got up and brought it in rather than peeing at the lab.

Gayle

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be sure and take the macrobid with food. and i find it REALLY strange they didn't do a u/a. emily, the urethra is very small and can be pretty difficult to find yourself. i mean to put lidicaine in it. they use it when they do cystos, but i don't know of anyone who does it on a routine basis. i think you were talking about getting your urethra dilated ling? that does help with hesitancy and poor flow and retention, but will not help ic. two separate issues. however retaining urine does promote infections. gayle i would still recommend you see someone as you have had blood and now an infection in such a short period of time. if there was no infection, where was the blood coming from? hope you feel better soon emily and it's an infection that clears up soon. i guess i don't know about otc because i seldom use them. they aren't contolled and you never know what's in them. i used some eye drops and thought i had pored acid in them. my opthamologist said that even the preservatives in some things are more wicked than the problem. so i get drops without preservatives. my point being, if you are not sure what's in it and most of us already react to everything, just get an ok from the doctor for otc. just my opinion. just my itty bitty suggestion....morgan

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Emily,

Definitely keep us posted on what you decide to do.

Morgan,

I got a urologist referral. And I started a 10 day dose of ceftin tonight. 10 days seems like a long time, I thought a 3-7 day course was normal for bladder infections?

Gayle

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thank you merrill for your concern...and morgan and gayle and every one else!

i decided to take a dose of the antibiotic after dinner tonight. it is macrobid and is only 2x a day for 3 days, so i figure i should know pretty quickly if it is helping.

once i know how i feel on that, i could add one of the bladder analgsics you suggested...but didn't want to do it at the same time, b/c then if i have side effects i will have no idea what is doing what.

and, i am not so swift sometimes...gayle you are a genius! man, sometimes i wonder where my brain is. i don't know why i didn't think of sending someone to go get a sterile jar for me and then i could just pee at home! and have someone take it in! duh!

so, i just emailed the dr....they actually check that! and asked if i could still get a test done with one dose of antibiotic in my system. i said i was uncomfortable not knowing whether this was a UTI or not and just taking an antibiotic without knowing. my bladder is always a pain and i am not convinced that this isn't IC, like the rest of you have!

so, i said my mom would stop by in the morning to pick up a jar and i would bring it back in the afternoon if a test would still be valid. hopefully only one dose of the antibiotic wouldn't be enough to mask the infection if that is really the problem.

gayle, do i just stick the jar in the fridge until i take it in? also, that is a good idea about the morning pee, but honestly i just pee all night long right now! so, i don't know when to do it! it's like i ahvne't even taken my ddavp! ugh!

i am really hoping for a tad bit of sleep tonight.

gayle, please also keep us posted.

and thanks again to all of you. i grin from ear to ear when i get responses! you are all soooo helpful. it is so hard to get any answers from the drs. office and you all really helped me navigate through this whole thing!

these things might be a nuisance, but at least we are in it together, huh? :)

emily

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Emily ,

I agree, without everyones help and support on this site I would be lost. I never did speak to my Dr so it really helps to get everyones input on this stuff.

Yes, refrigerate your pee if you are not going to be able to take it in right away. I know my husband wasn't too thrilled about a container of pee sitting in our refrigerator this morning but I was told by the lab to keep it cold.

I hope the antibiotic kicks in soon for both of us.

Feel better.

Gayle

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gayle, yea that's a fair amount of time to be on it, it is not a drug that i've seen given for uti, but if you can't take anything else..... we usually gave macrobid for 5-7 days so emily's isn't really long enough. weird. you should still finish the entire thing tho gayle otherwise your body will stop responding to it. i think i remember you saying it's the only antibx you can take. i'm glad you got your appt. it is very important to find the cause of this. sometimes it's simple, like honeymoon cystitis, which you can use your imagination on, sometimes for some reason you just get a stubborn bug that won't leave. the good thing about cultures is that they will tell you which drugs will treat infections. a lot of gals get recurring infections because they are getting an antibx that doesn't kill the particular bug in their urine. frankly i think all urines should be cultured so you get the right med. and anytime i get antibx, i get a script for a yeast infection too. for a lot of people you trade one for the other. the joys of womanhood :) women are much more prone to these problems because our urethras are very short, only about 1 1/2 inches to the bladder, so it's a very quick trip to the bladder. the trade off is, men have a harder time with the cystos, because of the length of theirs. also it sits right in harms way at the opening of the vagina, so is easy to get irritated from any number of things. (will never understand thongs) including pads, tampons, sex, even drying yourself too roughly after peeing can cause problems. but regardless, we need to find out whatever the culprit is that is giving us problems. we have actually had women come in and the only time they bled was when they peed, but the bleeding was coming from an irritated cervix! that's why we need to be strong advocates for ourselves. so good job girls, i'm proud of you all! :) morgan

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Dr told me always pee immediately before as well as immediately after! (Nothing like it for a mood killer, but it truly reduces potential for infection.)

And yes, I was on Macrobid for longer--I can't remember now if it was 5 or 7 days. Cultured the pee and I guess this was the right med b/c infection went away.

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