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[Mommyof2]

Hello I am new to the ICN boards, I have been in pain and discomfort for 2 years I haven't had any tests done, but I am getting a hydro-distention with a bladder biopsy in February, and urethra dilation because I've also been getting urinary retention, I believe I have IC but I've asked if urine retention is a symptom of IC and my urologist says its not. does anyone else with IC have this problem? I'm in so much pain and have no clue whats left to do.

[leelee88]

:welcome: Mommyof2,

I have IC and I always have the urge to go even if my bladder is empty, and there is times when I have retention or a weak urine flow..

Now I have seen on the boards where retention can come from PFD..

[Mommyof2]

Thankyou very much for the welcome. I get that feeling too very often and cant go. but once in a blue moon I cant urinate at all and almost faced to go to the ER in pain. my doctor has suggested to cath myself as needed but the cathater causes too much pain and burning. I take pryidum and vicoden for pain but sometimes that doesnt even help me go due to urination feeling so painful its almost like pressure and pain is perventing me from going :(

[fannierose]

hi...my name i susan...this is my first post to this forum....i have not been diagnosed yet but have some very troublesome symptoms and have been told that i might have IC...

i have been burning upon urniation for months but thought it was because i had started to drink hazelnut decaf coffee.....i also believe i have a dropped bladder which i thoought might be contributing to my symptoms....

i have not been to a dr in quite a while as there has been one family emergency after another for several years ...but, now i see that i should have taken the time for me amidst all the other heartbreak...

4 weeks ago i started having pain in my back which i have since learned is flank pain....at first i thought it was just back pain and went to my chiro (hurt my hamstring and quad muscle last year and was in bed for 8 weeks)....the chiro didn't help and i sensed that the pain was somewhat different than my normal back pain.....then i noticed that there was blood in my urine...got really scared...call my internist and he ordered me on doxycycline...up until this point and i am 59 years old...i never had a uti......felt better for about 4 days on doxy thn the urgency and some blood in urine came back......he put me then on cipro......felt better for a day and then what i believe to be bladder spasms started....i was urinating every 3/4 minutes all night.....sent me to the er the foillowing day/last sunday...i was there 6 hours and all they did was check my urine and say they were concerned because there had been blood in my urine and no bacteria showed up...i reminded the dr that i had been on meds for several weeks at this point.....went home...my internist prescribed pyridium....helped for a few days.....

then on wednsday there was some ...things...in my urine...softish dark brown nodules.....along with intermittent black flecks in my urine......called the dr and he said could be stones...could be ic....er doctor of course mentioned bladder cancer which has me very scared.....i have an appt with a urologist for next friday 12/29.....started again with urgency friday....started pyridium friday night and urgency is still there but not as bad.....

i have suffered with ibs for years although i t has been really good lately desprite all the family troubles....i am wondering if my ibs has added ic to it's agenda......when this attack first started, there was a HUGE blowup in our home and this started several days later....

i am really sorry to be going on and on but i am so confused....yesterday i slep most of th e day instead of preparing for christmas which is unlike me...not sure if i don't feel that well or am just depressed....

any input anyone might have would sure be appreciated...i have been trying to follow the diet laid out on icn.....it seems whenever i eat/....no matter what it is...i have to go to the bathroom more....

thanks again.......happy holidays ......susan

[Mommyof2]

Sorry you are going through all this, I know what its like with family emergacies where you cant break out of them to see a doctor thats why Ive been suffering with this pain for so long and finally seeing this is not normal to be in so much pain and have to urinate so much, I am up all night urinating and can only sleep 1 hour and have to wake up with severe pelvic pain and pressure, I hope you feel better, and merry christmas, let me know how you are doing, and take it easy sounds like you have been through alot.:hi:

[fannierose]

thanks...it has been a rough 5 or 6 years but i am hoping i will be strong enough to get through everything....i, too, hope that you find some relieft from you pain and discomfort....i am just so happy to have found this forum...

happy holidays to you and yours......susan

[Mommyof2]

I agree its great to have found this fourm. I probably would've gone crazy without it, I just started reading about IC and I have almost all the symptoms of IC :( and am hoping my doctor will see I really have IC and stop doubting my pain and brushing me off, I've been to 3 uro's and its really been hard to have hope for a normal life :( I have been taking everything I read from here about IC symptoms and my new uro agrees I might have IC is why he's going to do a hydro-distention with a bladder biopsy, this is my first one and I've been suffering for 2 years so I believe I finally found a doctor who understands what its like to be in pain, he was actually mad none of the other uros did this!! I was always being treated for a UTI or over active bladder! thank God I finally found a doctor in his right mind to see its possibly something else!! Hope you have a happy holiday as well. take care, and best wishes. :pray: I will be praying for you fannierose and hope all is well with you.

[fannierose]

thanks for all the good thoughts and prayers...right now i am feeling a bit better because i am taking pyridium 3xd.....also, today is my last day on cipro so i am a bit concerned if it is a kidney infection....i guess i will just have to wait to see...

hope things get better for you....off to cook dinner for the family....

happy holidays and be well.......susan

[LYNN V]

fannierose... I also have microscopic blood in my urine. I have not been dx'ed with IC. Do you have much pain? I have a constant unconfortable feeling in my lower abdomen. But it isn't usually a pain. Just uncomfortable. But I have a lot of pain in my back. I was having an urgency quite frequently. But it hasn't been a problem for about a week. However I don't feel that I empty my bladder when I urinate. So I don't know what my problem could be. Also do you ever feel bloated? I have been feeling that way lately. I just wanted to compare some of my symptoms with yours because we both have the microscopic blood in our urine.

[leelee88]

Lynn,

Alot of people with IC have blood in the urine, I think it comes with IC..I was dg with IC in Nov2006...I have the same symptoms as you..I dont have much pain in the bladder area, but have alot of pressure and urgency and frequency also.. I do have pain in my back..

[ICNDonna]

I think my most difficult time with IC was before I was diagnosed. Hopefully your urologist will find some answers soon. It's always easier to deal with a problem after the problem has been identified.

And Susan --- stress can play a huge role in IC symptoms. It doesn't cause IC, but can definitely cause flares.

Warm hugs,
Donna

[fannierose]

hi lynn...

i do have blood in my urine but it is visible...not all the time...off and on...and then i notice some*gravel*, it hink....so i'm not sure if it is a stone along with other things......i have pressure of frequency but no pain.....only time i feel some what of pain, is when i get the flutters which i assume are bladder spasms but they are down really low...in the vagina area....

and, donna...thanks....i thought stress might add to some of the already existing problems...nice to hear you say that....and, i agree, not knowing what is up is awful.....i have to admit when the er doctor gave me a list of things it might be, it really frightened me......i am off to the uro on friday and we will see what is what....

so happy to have found this forum and all of you....

take care......susan

[LYNN V]

Stress... a vicious circle... the stress causes the symptoms.... but the symptoms also cause the stress of not knowing what the problem is. My stress is so great now because I have lost my health ins and that has put a stop to my testing for now. Hubby had a stroke and can't work and lost our ins. He is on disability and has medicare. But I have nothing. I tried to keep my ins but $400 per month stretched our budget way too much. (Last year when I had pelvis and abdomen CT scan my co-pay was $1500) So I had to drop the ins. Now I am so depressed and stressed because I don't know what is wrong with me. I always have cancer in the back of my mind. Only because a uro surgeon that I went to said that is always a possibility. And that is terrifying. But I have never smoked and I know that is a good thing. I also think that no matter what my dx would be, right now I can't afford the treatment. I feel so hopeless right now.
Susan, you mentioned the flutters. I have also felt that. I never read anyone write about that. Also my tummy is big. I always had a flat tummy. But I've read that stress can also cause that. Lately I have been feeling bloated too.
I had my hormones tested last month. I am post menopausal. My estrogen is high and the tech wants my med. dr to check my ovaries. But that won't be happening anytine soon because of my ins situation.
So for now I keep reading all the posts here to compare my symptoms.

[Mommyof2]

I have also been told I have blood in my urine for sometime now, and the doctor keeps giving me antibotics and it doesnt help!:loco:
I just want them to figure out whats wrong with me because I've been in so much pain its making me so depressed and feel there is no hope for a normal life, they keep trying anti depressents telling me the pain will go away on them but its not, im just feeling scared and alone not knowing what to do. my pain and bathroom breaks constantly is taking time away from my 2 kids I want to be the best mom I can and I do everything I can for them but sometimes the pain is so bad I can barely move and I feel better just rolling into a ball in staying in bed the pain is so bad. I've been on disablity for 2 years due to the pain and having to use the bathroom too much where my employer asked me why Im always in the bathroom and to get to work, thats why I quit and from those 2 years I never knew what was wrong with me :( I hope everyone has a wonderful week, take care all.

[barbour1]

Hi there the hydro-distention should really help you, if you have frequency
issue's .I was a prisoner in my own home before i had two of them done.I was urinanting at least 60**times a day and i'm not kidding.Just make sure and follow there treatment plan.I had the hydro and then weekly treatments (dmso ( I still have ton's of pain but the pressure and frequentcy is much better at least i can leave the house now...I am not a Doctor but if you don't need antibiotics don't ake them find another Dr. And the blood in the urine was the first hint there was some thing wrong with the bladder,I bought some hemo strips and when i am in pain i always check for blood some times the strips turn fully green that means it's loaded with blood.WITH IC THERE IS SOMETHING CALLED PIN POINT BLEEDING ..Good luck to you! :smile tee

[Mommyof2]

Thankyou. I always asked my doctor why there was blood in my urine he always told me he wasnt sure and just thought it was an infection. that should've been a red flag for me when my urine tests from the lab kept coming out negative. I am hoping I found a doctor to finally help me I had just left my old uro in november and finally have a new uroligist who is going to do the hydro in febuary Im hoping janurary flys by Im in so much pain.. Im alittle worried since I've read some IC'ers have more pain after a ureathera dilation.. Im sorta in a state where Im scared to get the test done but Im desprate for anwsers!!! hes also doing a bladder biopsy, If my bladder doesnt look inflammed will the biopsy show I have IC?? hope everyone has a nice weekend, take care.

[barbour1]

You no like i have said find a good uro.My first uro was good but he did not treat IC and he was kind enough to send me to an IC specialist.I would go to the er in pain and even my gyno, in pain and they would try to give me and antibiotic.Dr.really are mis informed about IC .the uneducated one's think it's infection.My uro even gave me a book to read called waking up in tears go to the library see if you can get it.I deal with the pain but i could not deal with urinating 60 times a day.Other then pain the other stuff really cleared up with the hydro distention.the reason i had to pee so much is my bladder shrunk and would only hold 4oz. that's the size of a small baby bottle.. Sorry about my spelling i'm horrible..Any time you need some support feel free to email me!
'It takes so long to figure it all out but please don't give up!:hi:
I wish for you a good new year!!

[barbour1]

Also hope fully they will do it in same day surgery! Please ask them not to do it in the office in the hospital you will be more comfortable and medicated..The first time they sent me home and when i took the catherter out ow*********i could have bit nails * but the second time i came home with a bag for a week and it did not hurt when it came out.Also make sure you have some one to help you with the two kids you'll need it.....:woohoo:

[barbour1]

sorry to keep posting.But i believe when they strech your bladder that's when the ic appears. I can explain it like this, a regular bladder is white like your eye but an ic bladder like mine looks like an inflamed red eye more like the moon with craters and red streaks all through it,.If i had a scanner i would send you a ic bladder.Ask some one on the sight to send a picture so you can see one you will understand more if you could see it..

[Mommyof2]

My hubby is going to take 4 days off after the hydro, so he can help me take care of the kids, my uro said my bladder might look funny since I've had to self cath myself due to the retention.. and as far as I know I will be under general. and in the hospital. he tried the office one but it drove me crazy when they filled my bladder. my last uro didnt know what to do, so I found a university doctor that works close with people with IC and other bladder problems. I just wish he could've done the test earlier to give me some realif but he told me that was the earlist they had so I guess with the hoildays I'm very lucky to have it in early feb... and thankyou for the info, I've already seen the pictures of an IC bladder but I was just wondering since my doctor told me my bladder might be a little funky anyways because of the cath and hoping the urethria dilation and the bladder biopsy wont be too painful and hopefull if my bladder is abit red the biopsy could tell whats up with my bladder, I know how you feel about urinating so much I go about 30-40 times a day and its a real pain losing sleep and the pain is bad to wake up to when you need to go potty so bad. I can sleep an hour or less with getting the horrible pressure pain in my pelvic bad enough to push hubby outta the way to get to the bathroom. hope you have a happy new year too.

[fannierose]

hi...thanks for the post and all the great information...i am learning so many new things ....wish i didn't have to...but, knowledge is power....did you get those hemo strips at the pharmacy?

went to the uro for lst visit today....and he has scheduled a cat scan, cystology and a cystoscopy.......he wanted me to have the cystoscopy done in his office but i was such a wreck just being there...suffer from anxiety....that i called back and asked to have it done in a medical facility.....i just feel like it is being shoved down my throat....cat scan tuesday/blood work ekg tuesday....urine tuesday....and cystoscopy on wednesday.....does anyone know if this is normal procedure, doing it so fast? he also said that the procedure only takes 30 seconds but from all i have read and heard that isn't really true...more like 5-15 minutes...........kind of found him to be a bit patronizing but maybe he was just trying to be friendly and i took it the wrong way....

he seemed to think that my symptoms sounded like stone fragments passing thru my system but says he has to rule out other things first....again, standard procedure?

thanks so much to everyone for being there and sharing so freely......take care ......susan

[Mommyof2]

I think hes doing the right thing trying to rule other things out and for doing them so fast if you feel too overwhelmed by it you could always ask him to space the appointments apart, I do that because I cant handle doing everything in one day/week it drives me crazy because I need to find every bathroom on the way there and in the offices, my husband just thinks I'm crazy but wouldnt he know if he had to do the same?! I hope you get some answers from the tests and hope you feel better Soon. I will keep checking back to see how you are doing, and hope you have a wonderful weekend :). take care,

lots of hugs and support :)

[fannierose]

i guess you are right but i just have such a suspicion of doctors...and this is a horrible position to be in to feel that way.....

he said that the cystocopy only takes like *30 seconds*....now if i didn't know better and went for it without anything, i am sure i would freak out when it took 10-15 minutes.....so, i am having it done in the hospital......i am a worrier ...would just like it all to be over and have decent results....

i agree wholeheartedly with you regarding your husband ....if it were happening to him, i am *sure* he will feel differently....always so easy to say when it isn't you...i have a saying on my refrigerator which says....*knowledge without experience is just information*...how true is that, huh?

thank you so much for your support and caring...i hope you have a pain free weekend.....dr told me to stop taking the pyridium so i hope all goes okay....

talk to you soon.....susan

[Mommyof2]

I feel the same about doctors ever since one wouldnt stop during a procedure and it caused me alot of pain, I now am smart enough to speak up!! I told this doctor Im scared of the office test because of pain and he agreed to do it under general, its hard to find a doctor who will listen to you and not do something to make more money that will put the patient in more pain. I stayed away from orange juice today, and I feel a little better guess I will try to stay away from acidy foods, I hope your tests go smoothly, and have a happy new years and feel better!

:angel:

[barbour1]

I think you should go at it with the attitude that the Doctors work for you. That put's you in not so vonurable position.

[fannierose]

thanks for the reminder...after thinking about it a bit, you are entirely right....i sometimes turn left when right is the right way to go...if you know what i mean....

happy new year and be well.......susan

[Mommyof2]

Happy New Years! Im feeling alot better, only thing I'm feeling today is frequency and urgency but atleast the pain is at a minamial :woohoo: Im about to start a strict IC diet and see if that helps me abit since stopping the orange juice seemed to help pain Im really glad to have found this board to vent on when Im feeling really crummy and having everyone be so supportive :) you all are so great:angel:

[fannierose]

so glad you are feeling better....!!! hope all that continues for you...

i feel pretty good right now myself....thank God!! i am nervous about the tests...results, etc.....but i am *trying* not to get overly nervous....

happiest of new years to all.....thanks for being there....love, susan

[barbour1]

What ever way it turns out, some times it's easier to know what your dealing with and hit it head on.Not knowing what you got and no answers leaves you feeling like a hypocondriac at least if you no it's ic you can start treatments..I would think the oj would not be to good for you. Have you tried the prelief you sprinkle on your food?That might help. Try being on a diet for ic plus diabeties plus gerds disease.I don't think there is any food left.

[Mommyof2]

I havent tried prelief yet, I have tried pryidum but that doesnt seem to help too much, I'll have to order some and see if it helps any :) thanks again.

[barbour1]

pyrdium has never offered me any comfort either. your uro should be able to give you some samples..

[fannierose]

well...i did really well yesterday....ate some...didn't pee too too often...until last night....didn't sleep much....up peeing every 1 - 1 1/2 hours....i know i am very worried about the tests tomorrow and wednesday.....ct/ivp/cystology/cysostocpy ...but i am having anesthesia with that....just the thoughts of what it could be have me scared to death....

so, i guess my question is after all of that.....do you think my worry/stress could be causing the frequency....? as i said before i have had visible blood in my urine for the last month or so ...off and on.....family has brunch planned at restaurant and i don't feel much like going and afraid to eat too much.....but, i don't want to diappoint them....it's tough being a momma in this position...added to everything else....

although my children are grown, my son has some ongoing problems that really worry me...and, i don't want him to have to worry about me....

sorry to go on like this....just scared i guess....

i sure hope i can hear something from someone today....

happy new year.......susan

[Mommyof2]

Im not exactly sure if stress can cause frequency but I do believe it has a part in it, whenever I am more stressed out I seem to have alot more problems with freqency, guess its our brains way of telling us to relax!! I can only say from time I try to do more things to pamper myself when Im stressed such as taking a bath or listening to music. it seems to help but not all the time, I hope everything goes well during your tests and hope you feel better, take care, I'll be praying for you. best wishes. :):angel:

[fannierose]

thanks, angel...i feel your good wishes already....

take care of yourself......love, susan

[Mommyof2]

Wish you luck again with the tests, if you can let us know how your tests go! take care.

[L. Thomas]

Hello I am new to the ICN boards, I have been in pain and discomfort for 2 years I haven't had any tests done, but I am getting a hydro-distention with a bladder biopsy in February, and urethra dilation because I've also been getting urinary retention, I believe I have IC but I've asked if urine retention is a symptom of IC and my urologist says its not. does anyone else with IC have this problem? I'm in so much pain and have no clue whats left to do.

I have retention....and large bladder capacity. I have IC
Welcome to the board:hi:

[fannierose]

Wish you luck again with the tests, if you can let us know how your tests go! take care.


thanks...will do...

had the ct/ivp ...blood work and ekg today.....cysto tomorrow....as expected, i am apprehensive all around......but it helps knowing i am in your thoughts...

hope today finds you feeling well......susan

[Mommyof2]

L. Thomas, Thanks for responding, I will be getting a hydro distention next month and I am hoping to find out whats causing this retention and pain.

[Mommyof2]

to fannierose Good morning and good luck with your tests today and Glad you were able to get your tests done yesterday. :)

May God bless you today and give you strength to get through this hard time:)

[fannierose]

to fannierose Good morning and good luck with your tests today and Glad you were able to get your tests done yesterday. :)

May God bless you today and give you strength to get through this hard time:)


well, tests turned into removing 8 mm stone !!! didn't find out until i was already there...it is gone now.....thank goodness!! aside from a stent and some painful peeing, ii am okay....ia m very thankful that it wasn't something more serious and that i now know what is
what...have to go back to have stent removed on friday....

thanks so much for the well wishes and prayers...am still going to follow the IC diet as i think it is really good for me....

love, susan

[barbour1]

So glad your feeling better.

[jah]

Don't know if this will help or not, but my doctor put me on Elavil and started with 10 mg. That did not help, so he kept upping my dosage until he got it right. When he put me on 75 mg. it finally kicked in, and it felt like I had gone into remission. I now continue with the 75 mg. and I have no symptoms at all. When I skip the Elavil for a few days, the symptoms come back, so I know it is working. So what I want you to know is that you have to find the right dosage. 50 mg. did not work for me, but 75 mg. did. We are all very different0--but don't give up or think nothing will work--there is a treatment out there that will work for you. I also found great relief taking magnesium whether it be from Milk of Magnesium, Prelief, or plain Magnesium tablets. I have no clue why that seemed to help my symptoms. Maybe someone with a medical background can tell us why. Good luck to you, and do not give up, and have faith.


I have also been told I have blood in my urine for sometime now, and the doctor keeps giving me antibotics and it doesnt help!:loco:
I just want them to figure out whats wrong with me because I've been in so much pain its making me so depressed and feel there is no hope for a normal life, they keep trying anti depressents telling me the pain will go away on them but its not, im just feeling scared and alone not knowing what to do. my pain and bathroom breaks constantly is taking time away from my 2 kids I want to be the best mom I can and I do everything I can for them but sometimes the pain is so bad I can barely move and I feel better just rolling into a ball in staying in bed the pain is so bad. I've been on disablity for 2 years due to the pain and having to use the bathroom too much where my employer asked me why Im always in the bathroom and to get to work, thats why I quit and from those 2 years I never knew what was wrong with me :( I hope everyone has a wonderful week, take care all.

[Mommyof2]

thanks all, Glad to hear you are feeling better, I had to go to the ER today due to pain and found out I have a bladder infection, so now I guess I will be taking antibotics! this is sooo weird!

[fannierose]

So glad your feeling better.


thanks! for the well wishes and for being there with me thru this....

be well.....susan

[fannierose]

thanks all, Glad to hear you are feeling better, I had to go to the ER today due to pain and found out I have a bladder infection, so now I guess I will be taking antibotics! this is sooo weird!


thanks , too, for the well wishes and for being with me thru this...

so sorry you had to endure the ER but at least they gave you something that should give some sort of reliief...

take care.....susan

[Mommyof2]

thanks , too, for the well wishes and for being with me thru this...

so sorry you had to endure the ER but at least they gave you something that should give some sort of reliief...

take care.....susan

Sadly only for a short time :( wish it would make all this go away, but hopefully I will get this all taken care of next month, have a nice week, hugss

[fannierose]

Sadly only for a short time :( wish it would make all this go away, but hopefully I will get this all taken care of next month, have a nice week, hugss


sorry about all of this for you....hope you feel better today....

my next worry is having this damned stent removed......i didn't think too much about it but now that i have to go tomorrow morning, i am starting to sweat just
thinking about it....anyone have any insight?

thanks ....susan

[Mommyof2]

sorry about all of this for you....hope you feel better today....

my next worry is having this damned stent removed......i didn't think too much about it but now that i have to go tomorrow morning, i am starting to sweat just
thinking about it....anyone have any insight?

thanks ....susan

Our son has had 2 stents, hes had kidney problems since birth, I can only imagin what you must feel, best of luck tomrrow and best wishes. when they took his out it wasnt too long of a procedure... best thing to do is do your best to get your mind off it tonight if you can, Id suggest taking a nice warm bubble bath before bed to relax and hopefully sleep as best as you can before you go in helps alot of the anixiey I've noticed a good nights sleep can do wonders. :)

[fannierose]

Our son has had 2 stents, hes had kidney problems since birth, I can only imagin what you must feel, best of luck tomrrow and best wishes. when they took his out it wasnt too long of a procedure... best thing to do is do your best to get your mind off it tonight if you can, Id suggest taking a nice warm bubble bath before bed to relax and hopefully sleep as best as you can before you go in helps alot of the anixiey I've noticed a good nights sleep can do wonders. :)


hi...didn't get a good night's sleep because i was peeing every 1/2 hour but i did put some clary sage on a kleenex and brought it along with me .....the stent was out in 3/4seconds...without a lot of fanfare ....felt like a tampon being pulled from up around my eyeballs.....but, nevertheless, it is gone.....some pain today but i haVe been taking extra strength tylenol and so far so good....

thank you so much for all your support......i am continuing with the IC diet as i feel it is good for most bladder conditions....

take care of yourself .......susan

[Mommyof2]

sorry you didnt get too much sleep, but am glad the procedure wasnt too bad. and am glad you are doing ok pain wise,
and you are very welcome, countine to feel better!

best wishes. and have a wonderful weekend

[Mommyof2]

Hi all, Today I'm in alot of pain, linking it because Im due for my period so I'm really trying to stick to the IC diet today, hope you all are having a nice weekend, take care all.