Bladder capacity only 1/4 of a cup?

[ICLori]

I"ve been flaring about two months now, with no end in sight. Have tried everything, nothing helps but percocets and have to wait until 27 July before I get any more pain meds as my uro isn't into giving out pain meds. (I am going to a pain management clinic then.)

I have been keeping track of how often I void and how my capacity is.

I find that I am voiding between 40-50 times in a 24 hour period, and my capacity seems to be just under 1/4 cup.

Is that normal for IC?

If this continues, with no abatement to the flare, would I be considered a candidate for bladder removal with that number of voids per day and the capacity of 1/4 cup or less?

Thank you, I'm getting pretty down about this flare.

Blessings, Lori

[tigger_gal]

HUGS I am sorry you are having a rough time. You are voiding 2 ounces/50cc's per void.. I used my hat to mearsure it for you.. I usually never void over 3 ounces at a a time... Heve you had a hydro? wonder if it will help you. . Have you considered interstim b4 blader removal?? I do have it and it has cut my frequency in half.. but still void 3 ounces:( I had horrible urgency and thats gone.. can you take motrin you can take up to 3 maybe 4 otc ones ther 200mg each..

hope you feel better soon
:kiss:
Cindy

[ICLori]

Thank you so much, Brat...I have tried megadoses of Ibuprofen (prescription strength doses), naproxyn sodium, tylenol, and aspirin. No relief.

My doctor told me "no" on Interstim (he doesn't believe it is helpful, or else won't do it because it's too expensive and the Army won't pay, I don't know which...)

He also says "no" to any hydrodistention after the initial one for diagnosis, again about the Army saving resources/money.

And my hubby is not happy with the idea of me paying an outside doc for anything. He has grudgingly accepted the idea of, if the Walter Reed clinic doesn't help me, paying for a civilian pain doctor then, but he's mad about it. He says he's more mad at how lousy the Army is, health care I mean, than mad at me.

I'm just wondering, is it better to be on narcotics for 24/7, months at a time, better to just suffer without (not an option for me, I have reached the end of my rope as far as coping with suffering and pain goes), or to have my bladder removed? Because those seem to be my choices at this point.

I am going to ask the pain clinic to let me try a TENS unit, and I'm trying to make an appointment now (left a message) with myuro to see if I can try Procardia and estrogen cream, two things I have not tried yet that have given relief to a few patients.

I'm just running out of options. More than anything, I dread the idea of living in pain, without pain meds etc. for the rest of my life. That's not doable for me, I just am not strong enough to grit my teeth and bear it for the next 40 years or so of constant pain.

Blessings, Lori
P.S. thank you so much for measuring for me. The hydro only gave me about two weeks of remission anyhow - almost not enough to bother with, you know?

[Kathi]

So sorry that you are going thru such a long flare. Going that many times a day is horrible. Have you checked your diet & things you are ingesting? I know the Army is stingy on it's health care, we have had others with the same complaint. I hope the pain clinic gives you some help, they have helped many others. Will say a prayer for some relief for you. Hugs, Kathi:pray:

[ICLori]

Thank you so much, Kath...I'm very careful about the diet, it's actually medication more than anything that causes my bladder to go haywire. For instance, I get a mini-flare each time I take my Elmiron. But I think Elmiron is helping me in the long run so I keep taking it.

It's not anything I'm eating/drinking - it's just my bladder....

I am hoping the pain management clinic will help me too but it's Army so I'm not expecting much...

Blessings, Lori

[tigger_gal]

OMG LOri, I can't believe the army would go thru the expense to have your bladder removed verses the interstim.. It has helped me greatly... print this up take it to you uro and it that don't work send it to the ins company... this artical my DR wrote.. he is one of the to 10 IC Specialist in the united states. I will provide you with his name and number for your dr and you if you want it..
http://www.medreviews.com/pdfs/articles/RIU_4suppl1_s36.pdf (http://) (you may hve to type it in I cant getit to work gggggrrrr, when I typed it in it did) this is all about the intersim and its not from medtronics.... but they have great info....
My sister had a baby and her hubby was in the army, they would not cover a gyn just a mid wife and her baby was breach.... I am ashamed of the us military service for such poor medical care...... there more interested in "other things" (lets not get me started on that one:mad: )
Hydro ...... yep I know exactly what you mean I just had one not long ago.. my reward was a horrible flare for 8 weeks & peed blood for 4 days.... uuuuggghhh.
I hope the tens unit proves affective for you.. :thumbsup:
I take flexeril for my fibro... and it dose help my IC pain.... thats a thought. I never had any relief with the naproxen and the motrin. I also take vicodine, and an ambien at night....
good luck and hope this artical is of some help to you.
Hugs
:kiss:
Cindy

[ICLori]

Thank you so much, Brat, but it wouldn't make any difference...the Army won't do interstim for me. They probably won't do bladder removal, either. I haven't actually asked about that.

Actually all they do is DMSO (doesn't work for me), Elmiron (still in a 2-month long flare that most likely will never end, I am probably in permanent pain now as my IC has progressed over the past 5 years I've had it), Ditropan (didn't work), Atarax (didn't work) tricyclics and other antidepressants (bad reaction) OTC methods (didn't work) IC diet (still in pain and peeing 40 times a day anyhow).

Anything beyond that...if it doesn't work for you, you are told to 'live with it."

Live with it live with it live with it. Even when you pee 40-50 times a day/night. Even when you get no sleep. Even when you are in constant pain.

Live with it, live with it, live with it, that's the Army healthcare motto.

Blessings, Lori

[Audrey Rose]

OH LORI!!!
I am so frustrated for you!! I think it is so pathetic that our military familes get such sub-standard care. You should have the best care available. :::she stamps her feet and growls....
:cussing:
I am going to pray really hard that the pain clinic will have something to offer you that will actually help. And that the Elmiron will kick in and make a huge difference.
:pray:
NOBODY should have to "Live with it"!!! That makes me so mad!!
:::she leaves the computer fuming and shaking her head.
:shake:

[ICLori]

Thank you so much, Audrey Rose.

If they tell me to "live with it" this time I am

1. Going to a civilian pain doc (got recommendations from a nice lady at the ICA)

2. Filing complaints against the Army docs for failing to practice standard of care.

Blessings, Lori

[Audrey Rose]

GOOD FOR YOU LORI!!!
:thumbsup:

[tigger_gal]

Lori, I am so sorry you are going thru any of this and quit frankly would love to be fly on a wall when you file a complaint... Sending you bunches og hugs and prayers
:kiss:
Brat

[Kathi]

Have you tried dumping the Elmiron into a little water & throwing the capsule away? Some have a real bad time with the capsule. They won't change it, even tho they know about it. Hope all gets better soon. Hugs, Kathi:hi:

[ICLori]

Thank you, everybody!

Kathi, I thought the problems people had were gastrointestinal...that when they took it out of the capsule, they didn't have the runs so bad etc....not bladder pain? Anyway I had the runs when I first started for awhile but then my body got used to it so it's fine now.

My stupid bladder just reacts to any pill I take, some more than others. For some reason my bladder doesn't react too much to any food, but beverages/pills -there's the problem...maybe it's the fillers in the pills. But when my bladder is okay, nothing bothers my bladder...weird.

Blessings, Lori
P.S. My husband is going along with me to the pain management meeting and he said he's going to ask to speak to the commander, the head of the clinic, whatever it takes until I get some help.

[crystilclear]

I'm so sorry to hear about your dilemma. It'sd aweful that they don't have a better quality health care service for our brave men and woman who serve this country. Isn't there some meds you haven't tried yet? I would wait on the bladder removal maybe threr's something else that would help. I use Nulev for frequency and urgency. Have you tried that? I know that I'm probably not helping and I understand that you must be frusterated of trying things. I wish I could help more :( I'm glad your hubby is going to the app with you. You mean business and they need to help now! I hope that you find the answers you are looking for. I've had IC since I was a young child and I know it's hard to live with. There's still hope and I pray that you will find an answer asap. Please let us know how ytou're doing and what happens at your next app. Take care of yourself! I'm sorry I am not able to do more. I'm always here if you need to talk. - Chris :kiss::pray:

[Katrina]

Lori, gastrointestinal problems can hurt the bladder even if you don't notice them. Sorry you are having so much trouble. Your situation is very frustrating. I am saying a prayer for you.

Take Care:kiss: :pray: :kiss:

[ICLori]

Thanks, everyone, for listening to me and helping me!

I got really good news today! My uro took me seriously, he believed me when I talked about voiding 40 times a day, 20 of them or more at night....he could see I was really hurting.

He scheduled me for a hydrodistention/cystoscopy next week (Tuesday), gave me a script for 50 more percocet (50!!!) which I will try my best to save for the trip to Montana in August (in case my pain management docs won't help me) because then I will be able to manage flying on an airplane even while I"m in pain, because the Percocet will take the pain away for awhile. And I will be able to ride in a car around the state, sit in a movie theater, go to dinner, etc. - all the things a normal person can do that I can't really do so well when I'm hurting and peeing every ten minutes. I was sooo scared about that trip, how I would manage, and I couldn't cancel now after paying so much for the tickets and my father's 70th birthday, with him looking forward so much to seeing me. Can any of you relate to that, to worrying about a trip or social obligation that you think you can't get through because of the pain?

Man, now I feel really bad talking trash about Army docs. He's a great doc. I don't know why he didn't know about IC bladders being hypersensitive to meds, but no doc is perfect. He's a really nice, caring doc.

Oh he gave me a referral to a uro-gyn too to kind of see if something was going on in my uterus (uterii since I have two of them) that would impact my bladder. You know, talk about a hysterectomy, etc., look more for endometriosis, who knows what but hopefully something that would help.

Jeez, they can take every organ I've got, LOL, if it would make the IC stuff stop! Take my double uterus set, take my bladder, take any non-vital organ you can grab, I don't care, just get rid of these symptoms!

You know what though? Ever since I met with him today, my bladder has started to feel somewhat better. Now I am peeing only every hour or so. There must be a mind-body connection, I feel better just because I got to see my doc!

He really is so wonderful. Gosh I feel bad all that worrying I did, thinking for sure he wouldn't give me more pain relievers, etc. He was really nice and he seemed to really care that I was still hurting.

And I still have my pain management clinic meeting on 27 July.

I did ask him if I could try DMSO cocktails once more. Because when I tried them before, each instillation gave me an infection. After that happened twice (two instillations, two infections) I got fed up and stopped. So I never gave it a real try, because of the infections making everything so much worse. You can understand how I was afraid to try it again! But I told him, I want to try DMSO if someone is willing to prescribe me an antibiotic to take, to ward off infection if possible.

I am also going to ask the uro-gyn if I can try estrogen cream, maybe that would help? I read a couple of stories of women who had UTl type symptoms, like IC, and it turned out to be thinning of tissues due to lack of estrogen in the tissues down there. Since my symptoms last cystoscopy were centered mostly around my trigone and uterus, and that's where the estrogen receptors are, maybe there is something to that theory of estrogen helping some people.

Blessings, Lori