Its back

[amber83]

Hi all,
I was hoping I wouldnt have to come back to this site for awhile, but here I am.
I had a cysto/hydro done about 2 months ago, before this I didnt have much of any symtoms for about a year. But its back! My bladder has been soo sore and feels like its gonna burst for about 2 weeks now, I cant stand it. My lower back is sore, and I feel generally ill.
I have a question, hoping someone can answer. I've been needing to pee about 4 times + a night lately, what I dont understand is that everytime I do, there is quite a bit of urine, even though I just peed about an hour ago, how is there still so much every hour, without me drinking?
Also is this back because of my procedure, would it take 2 months to come on after doing so? Im so confused, its just been so long since I was this bad.
Does anyone know of anything natural I can take to help decrease the pain and discompfort? or any home remedies. Nothing is helping.
Thank you all for your time in reading this, I hope we get some relief soon.
God bless, Amber

[tbokay]

Are you completely emptying your bladder each time? Maybe you are retaining some each time thus you need to go again in an hour.

[ICNDonna]

My suggestion would be to see your urologist to be sure you don't have an infection working. I haven't had a UTI for a long time, but with IC it's sometimes hard to tell the difference between a flare and infection.

Warm hugs,
Donna

[VickiB]

So sorry this has happened to you Amber!

As Donna mentioned, if you haven't already, I would suspect a UTI first. I know I can't tell the difference between my flares and an infection!

For natural treatments, my first suggestion is diet if you aren't already doing that. Increasing my water (untreated water) intake is always helpful for me. And if you aren't on a sodium restricted diet, drinking baking soda in water can be soothing. I use 1/2 teaspoon baking soda to a glass of water. Some use more, but I find more makes me want to throw up it tastes so awful!

Hope you feel better soon!

Vicki

[amber83]

Thanks for the info.
I feel as though I am emptying my bladder fully each time, I get relief, But then it doesn't take long before I gotta go again.
I dont think I have a UTI, like you say it is hard to judge, as they feel similar to me as well. And I haven't had a flare in awhile, so I could be mistaking it, however I dont think I am.
I'll try the baking soda and water.. Im new to IC so I haven't really tried much of anything. (besides that good old hot water bottle). I haven't really stuck much with the diet either. I do try to stay away from acidic drinks though.
Thanks again, Amber

[Motherof2]

Sometimes I take regular over the counter Calcium Citrate. It helps.

[amber sevy]

:grouphug: from one Amber to another,
I all ways feel as you do. To give you an example I always goto the restroom before my Dr. installs the DMSO into my bladder yet there is always at least 80cc he has to drain before my treatment. I can never empty my bladder. I am up at a minimum of 3-5 times a night and I do not goto sleep till after 11:pm I have not found my trick yet but I am still looking. We are alll here for you you are never alone at the ICN

[rosesitty]

Don't want to add something else to the mix, but you might want to have them check your blood sugar levels. Sometimes diabetes can cause increased urination. Better safe to check than be sorry.

[~*~Christine~*~]

The voiding a lot of fluids at night even after fully emptying the bladder happens to me as well; in fact, it happened every night ever since I was 16 so it's not a UTI (for me) but you can still get checked, as posted, to rule it out.
I'm not a doctor but I'm guessing it's kidney retention. Just like some of us have problems getting all the urine in our bladders out the kidneys might have problems dispensing the fluids into the bladder, maybe because of spasms or something; so when you're sleeping your muscles are relaxed enough to allow the urine to pass into the bladder. Anywho, that's my guess

[Casi]

:hi: Amber I am so sorry it came back!
I do the same thing sometimes w/o drinking a whole lot I will pee a bunch , then not long after I go again. Like others mentioned I know I have bad retention. I really hate when my bladder is soo full and I go pee and - nothing. It hurts so bad, I never strain to pee b/c I was doing that prior to my dx last year and had to re-train my bladder. Next time I go to my uro I will have to address my retention b/c I've became very aware of my bladder and know that when I pee, even if it's a lot I can feel more in there and then I just have to relax and then 30min to hr later I'll pee the rest out, but it's wierd cause even then I feel like theres more in there.
You are wondering if the cysto/hydro made your symptoms come back.I know a lot of people benefit from that, but everyones different. I have dealt w/ pelvic pain for 11 years from endometriosis and probably IC, but just got dxd last year by a cysto/hydro. My pain was bad prior to the procedure, but every since then I have been doing a lot worse than before the procedure and then I did instills at home 2x a week to every day and feel that also aggrevated things. I am also looking into natural things to take b/c I hate taking all this synthetic medicine, but have only tried a couple of things as I am very cautious trying different things. I'm always afraid it will make me worse. As you know this site is full of information and a lot of people here are very knowledgeable about natural remedies. A good forum to read thru is "Alternative Therapies". I've gotten great info there.
Didn't mean to type so long!! Again I'm sorry you are dealing with this again, I hope you find some answers and treatments that are benefitial to you. Take care and update us on how you're doing!!:grouphug: :grouphug:

[amber83]

You guys are all so kind to send me your information, I apprectaite it emmensely.
I usually only had mild flares, that would only last a few days then I'd be fine again for awhile. Lately I've had more painful and erritable symptoms that have been lasting awhile. Its been a couple weeks for this one.
You guys mentioned kidney retention and really I cant think of anything it could be besides that, that makes that much sence. I'll void at say around 12am, sleep for a few hours, get up go again (just as much as the first time). Then I'm up again another 3 times + through the night, peeing just as much, as if I just drank a glass of water an hour before. It's so frustrating because I am waking up because of the pressure on my bladder, from needing to pee sooo bad. I'm gonna ask my doctor next visit to be sure.
About blood sugar levels, my little brother has diabetes (type 1) and enjoys poking us all occasionally to see if we may have it. So on that part, I know I'm fine, but very good thought, Thank you.
As for the UTI I am going to the clinic today, to get that ruled out. I've heard that when you have IC that you always test possitive for UTI, Is this true?
Thank for the info Casi, Its nice to hear that other people are experiencing similar things. I have to pee alot during the day, but the ammount is only small throughout. Now the night is different.. maybe as Christine said, my bladder is further relaxing through the night, allowing the urine to pass though easier.
I got alot of info from you guys, thanks so much, Amber

[Briza]

amber83
Sorry you've been feeling bad again. Hopefully things will get better soon. :grouphug:
I was wondering why you had the cysto/hydro 2 months ago since you had been feeling well for the previous year? Just curious.

[amber83]

Hey all,
Just wanted to let ya all know that I did go to the clinic. Everything came back neggative. No infection, no sugars. I wish it were a UTI but I guess not!
I hate the fact of starting Elmiron again, but the pain is getting so intence that I'm becoming disabled. Do you have to be causious about when to eat, while on Elmiron, or is it just a sugestion to take it 1 hour before or 2-3 hours after a meal? Its so inconvenient.
Also my Elmiron has been sitting around since Sept. 05, is it still ok to use? or would this be expired? I am on 100mg 3 times daily.. what does daily refer too? every 8 hours?
Sorry for all the questions. I dont know a whole lot.
The reason for my cysto/hydro was just to confim the IC. My doctor wanted me to do it awhile back when I was really bad. I was down for a whole summer. Antibiotics after antibiotics.. they thought it was a UTI.. after a few months on Elmiron I got great relief. My doctor knew it was IC, but I wanted to know for sure. I've found comfort in knowing the diagnosis.
Amber

[Briza]

Amber83
I can understand the feeling of wanting to know for sure what state your bladder is in. As for the Elmiron, I think it would still be good, have you checked the bottle for expiration date? If not, call your pharmacist. It's probably still good.
When I was on Elmiron I tried to take the first pill as soon as I woke up, the last pill right before bed and the middle of the day one just whenever, regardless of when I had eaten. In the studies it was taken on empty stomach, I believe that's why it's prescribed that way, but I doubt everyone takes it on empty stomach all the time.
Best wishes

[Tuckersmom]

My Uro said that meds are good for at least two years from the date filled and probably are good for longer. All expired meds from pharmacies and manufacturers get sent to third world countries. Your Elmiro is still good so long as you stored it properly, in a cool dark place, such as a kitchen cabinet.

IC does not cause a urinalysis to show a UTI unless you actually have one.

Chamomile tea can also help to calm your bladder.

Sticking strictly to the IC diet will help improve most people's symptoms tremendously.

Also you can try Prelief before problematic foods or drinks if you go off the diet.

[sacausa]

Hey!
I have the same thing happening to me.... I definitely do NOT have urine retention though (have been tested for it).... mine is from monthly fluctuation in hormones where my entire body retains water and then when I get more hydrated and my hormones change again...then my body releases all the water I had been retaining! I would seriously go every hour day and night without drinking a drop! Luckily it only happens a few times a month for me though.... Maybe try staying super hydrated and stay away from too much sodium which can cause water retention in the body... I doubt that your kidneys are retaining, your urologist would have picked up on that by now! Good luck... just my two cents :)