What are the typical symptoms?

[TiffanyK]

It seems like we all have somewhat different symptoms of IC and that even one person's symptoms can vary from time to time. For me I pretty much always feel like I have to pee, which drives me crazy with anxiety. On top of that, sometimes - lately most of the time - I have varying degrees of pelvic pain as well. I guess it's my bladder - low center of pelvic area above the pubic bone. And sometimes the urge to pee gets even worse and I think that's when my urethra is flared for whatever reason. Are my symptoms pretty much the norm or not??

I also don't understand how this can be ruining the quality of life for so many of us and there is not only not a cure but apparently not much that helps ease the symptoms either or we wouldn't all be here suffering together? Is that true? I mean I for one don't know of one treatment that helps me. I'm on Elmiron and Oxytrol and I don't even think they do anything but I'm afraid to stop taking them just in case they are. I'm so sick of this!!!

[~*~Christine~*~]

Hi Tiffany, your symptoms seem pretty common. Does the pain in your pelvic area feel like a spasm, you know, sort of like a stomach ach but in your bladder? Just curious because I get that too...
How long have you been on the Elmiron for? It can take many months to be effective : S
IC hasn't had the research it deserves because many urologists still don't believe that it's a real disease, that it's all in our heads or something

[Kathi]

:grouphug: Yup, pretty classical symptoms. Elmiron takes about 6 months or more to kick in. Don't get discouraged. Hugs, Kathi

[vm]

They sound like my symptoms have always been when I am flared up.

Give that Elmiron some time --- if you are one of the people ity helps it may help in a HUGE way. :kissing:

[TiffanyK]

Thanks for replying everyone. So you all feel like you have to pee ALL the time? Because I do. And by the way I've been on the Elmiron for many many YEARS so apparently it's not helping - or maybe I'd be even worse without it!

[Katrina]

I have a constant sensation that is "my baldder says I got to go" that is not affected by be going or not very much....I have bladder pain sometime...it hates it if I hold it.....urethra pain....back pain, urgency, frequency, fatigue, insomnia, pain during intercourse and after, white things in urine

Symptoms I know others have but are not common for me burning when urination, buringing in the urethra, blood in urine.

So that constant sensation of having to go....you are not alone!

[Sarojini]

Yes... I too have a constant awareness of my bladder, sometimes it's a pressure there and sometimes it's the "gotta go" feeling. And believe me, sometimes when I have to go, I HAVE to go --- the sensation can be blindingly intense and painful. I also have a lot of bladder pain -- suprapubic, as well as sometimes off to the sides, and in the lower back. It can also radiate down to the labia during major spasms. I also have some pain in the urethra (like a knitting needle being stuck up there) and occasionally burning when I urinate (that happens a LOT after sex). When it gets really bad I feel like I have broken glass or an electric current running through my bladder.

Anyway, you are right that everyone's symptoms are different, and that symptoms can vary even in the same person -- some days I have some but not others, and it changes day by day. My favorite days are the days I don't have ANY symptoms at all :)

[debzx]

Having had a "pottasium test and told its not IC!! my gp now says that the test is nopt 100% and he feels that i do have IC?? he cannot give me any thing for inflammation of the bladder?? is my gp thick or what!!! I have changed to a female gp today i am hoping that this will be the start of getting HELP!!


debzx

[onegoodday]

I Have That Have To Go Feeling All The Time, Except When I Go Only A Few Drops, Sometimes I Really Have To Go Alot And Then Its Every Five Minutes.
Soemtimes I Have Pain In My Rectum And Uretreha, And A Pulling Sensation In Vagina..
I Guess Its All The Same But Yet Different.. I Have A Question About Sex, Lately It Has Been Painful During Penetration,like I Am Tearing, I Have Been To The Gyn, He Says Its All Fine There,so I Know Its The Bladder, Doesn Anyone Else Has Symptoms Or Flare Ups Afte Sex?

[linz]

i have the exact same symptoms tiffany and haven't ever found any treatment or meds which helps all that much at all, but like you i'm too scared to stop taking them incase it got worse. but really when i think about the beginning of my ic i was still going as much as i do now, but if anything i've got much worse because i don't go out even a fraction of the amount i used to go out. i remember for the first two years into my ic i still was ok travelling and going ok but now even on a good ic day i find it a constant struggle. i've never experienced remission but i hope every one of us gets to experience that at least for a short while. remember we're all fighting the same battle here and researchers never give up, we will get the relief we deserve some day! just hang on in there! <3 :)

[classics]

Hi Tiffany,

You are right about those with IC having different symptoms. I was diagnosed with "mild IC". I have constant urethral burning except when I'm sleeping. The burning occurs all the time, but seems better when urinating, but burns more just after going. I also get a stabbing pain in the urethra when just starting to pee and there is some pelvic pressure or a "not finished going" feeling. My symptoms increase when I'm in a car or several hours after having sex.

When I first had IC about a year ago, I had some frequency (15 to 30 minutes). Now I go about 60- to 90 minutes, sometimes 2 hours, and at night I go once, but that's because I take Elmiron with water before I go to bed.

My urethral area feels swollen sometimes, and when I bend over to pick something off the floor, I get a stretching, dry feeling, like I have a tampon in that is partially out. Though I've been seen by a gynecolgist and have had several vaginal exams by different doctors, nurse practioners, I hear a lot of "everything looks normal down there". All tests prove negative.

[TiffanyK]

Thanks everyone for your replies. I can't believe what a miserable lot we are! I'm going to a new urologist later this month and now at least I know that my symptoms are normal for this disease! Thanks and good luck to everyone!

[gwynnie]

I have the exact symptoms as described by Sarojini.. but sometimes its worse and i just cant think straight and sometimes when i am in a flare, it can last for 4-6 hours of constant pain!!!!!

[RedLione]

Yes, to all of this! Tiffany, I agree that you don't know if the Elmiron is helping because you don't know what you'd be like if you weren't taking it! I stopped taking it a week ago so I would know if the new meds where helping, which I think they are, but I'm definitely going back on it because I'm definitely in a flare. Which I describe as: my bladder feels hot and raw and red, like I can just see the lesions and ulcers. Needing to pee all the time feels like the urine is burning me inside and I have to get it out. I only wait as long as I can because my uro told me not to leave my bladder empty any more than I have to. But "raw" is the major description I would add to what everyone else has said.

[Imustpee]

I feel like I have to pee ALL THE TIME...even right after I get done peeing...my uretra burns and there is a pressure, all the time..after sex it is worse..I get a little relief right after I pee..I have been on Elmiron 3 months, but I have had I.C. 37 years..there were a couple of dr attempts with D.M.S.O. but that didn't work...

[Wimpers]

KATHI- I don't know how I can wait 6 months for the ELMIRON to get feeling better. The Dr. said no pain meds you will get better.
SILLY QUESTION---how does every one have an exclemation point on there posts??? I know the circle beside it shows it someone is on line....
HELP!

[Wimpers]

I've been wanting to have sex---& my husband misses it---but I hurt so much inside that it would get worse...what next?

[onegoodday]

I know what you mean about sex. I think that is the one thing I really feel bad about for my husband. At first, he was angry , but I couldn't blame him, but he has come to understand and when I can't have sex, I try to please him in other ways. It was big adjustment in our marriage and something I felt guilty about for a long time. I know it was and illness and not lack of interest, but I missed being intimate. When I feel god we take advantage of it, then I pray that I don't have a flare!

[Kathi]

What do you mean No pain pills??? Is he crazy? Ask him again or go to your regular GP to get some. Many of the ladies (probably most)are on some kind of pain meds. Or at least, have some on hand in case of a bad flare.
Sorry about the 6 month wait for Elmiron. Hugs, Kathi :yikes:

[Imustpee]

I am not taking any pain pills..just Elmiron.

[TiffanyK]

How do you all get pain pills? I've had 3 urologists and a primary care and none of them offer me pain pills!!!

[Imustpee]

Me either. I have never had anyone suggest pain pills..

[shennan]

pain meds and valium-- i asked the doctor for pain meds and told him my mom told me to ask him for valium. my mom took it along time ago for anxiety. it helps relax the muscles. i have pfd and back spasms. i was not leaving the office until i got the meds. i was not rude, i just told him that i needed something. i felt so unwell. this doctor referred me to dr. reeves, his associate. i am in the austin, tx area and dr. reeves is the ic specialist!!!! he also refilled my valium and norco. they only give 20 tablets in the script, but it helps. i take halves. they last longer and don't make me as sleepy.

the sex thing---- i read that the ic woman or man has to be creative, not to say that you or anyone else isn't. oral sex is helpful and side-ways/backwards works the best for me and my husband. this way there is no pressure on the bladder. although i do have some spasms in my back during the intercourse, i use pillows for support in front of me. less penetration is the best. husband must be very gentle, no heavy thrusting. you do have to find your most comfty position. this is what has been the best for me.

good luck!
:butterfly
shenna

[shennan]

:idea:

girls, i have found that the best time to have intercourse is the last day or so of menstruation, when we are lubricated with a small amount of blood/fluid, still. the other time is during or close to ovulation.

these two times don't give me as much pain as the rest of the month.

just give me some relief to have intercourse with my loving hubby, baby jesus. :)

this is what works for me. :wink:

good luck.
shenna
:toilet:

[Imustpee]

I am doing continuous birth control pills to totally stop my cycle..

[Mel53H]

Hell, I am menoposal! You get dry down there anyway. Besides, my husband is in a nursing home! i guess you can say that I am a virgin again! LOL!!! :lmao: :biglaugh:

Sometimes you have to laugh or you will go nuts!

Mel53H

[Imustpee]

Sometimes you have to laugh or you will go nuts!
Boy isn't that the truth..so far since 6 am I have been pee 15 times...it's 11 am now..I can't get in to the dr until tomorrow..It's going to be a long day..lots of water..

[shinana]

Hello Tiffany and IC friends, my name is Diana and I was just recently DX with IC. I have a couple of questions about this disorder. On average I have urgency to urinate about 30 times a day and sometimes feel I may not make it to the bathroom. The pelvic pressure and cramping is all the time, plus I have vaginal discomfort, best described as a burning sensation. I have leg and back pain and sometimes it feels like my pelvis is being pulled apart. I know these are common syptoms, however when I had my cysto the urologist said my bladder looked okay. My DX came from my GYN Dr after my syptoms continued. He said that the bladder does not always show the damage, and he goes more by the syptoms. He also stated that he has many pts that were not DX after seeing the urologist. I am somewhat confused and wondered if any of you can relate.
Diana

[Imustpee]

That's true...sometimes the ole bladder looks just fine and dandy...weird huh?

[crystilclear]

It is so true that everyone's IC is different and responds or doesn't respond to the same things. I am taking Elmiron, Atarax, Imiprine, Nulev, Oxytrol. I also take Hydrocodone, Aciphex, Ultraset, Ambian, Flexeril, Excedrin, and Asocol for other things. My IC was horrible at first sending me to the hospital from the pain but it is a luttle better now. It flares two weeks out of every month instead of all the time now. I think it has a lot to do with stress and hormones with me. The Oxytrol has helped some I went from 40 + to about 15- 20 times a day. I am going to ask my uro if there is something stronger. I hate having to go all the time. I hardly drink any liquids which I know is horrible but when I do it is litterally like every 10 minutes. Tyhe pelvic pain is horrible but tollerable now. I don't know how much better I really am because I take the Hydrocodone, Flexeril, and Ultraset now. The Flexeril seems to calm down my bladder muscles a lot. I hope you find something that helps you. Take care- Chris

[charzysbebe]

Hi Tiffany,

You are right about those with IC having different symptoms. I was diagnosed with "mild IC". I have constant urethral burning except when I'm sleeping. The burning occurs all the time, but seems better when urinating, but burns more just after going. I also get a stabbing pain in the urethra when just starting to pee and there is some pelvic pressure or a "not finished going" feeling. My symptoms increase when I'm in a car or several hours after having sex.

When I first had IC about a year ago, I had some frequency (15 to 30 minutes). Now I go about 60- to 90 minutes, sometimes 2 hours, and at night I go once, but that's because I take Elmiron with water before I go to bed.

My urethral area feels swollen sometimes, and when I bend over to pick something off the floor, I get a stretching, dry feeling, like I have a tampon in that is partially out. Though I've been seen by a gynecolgist and have had several vaginal exams by different doctors, nurse practioners, I hear a lot of "everything looks normal down there". All tests prove negative.

You described my "IC" exactly!! I have constant burning!! Sometimes it just feels good to sit on the toilet after a bad bout of burning and relax my urethra. Do you get that way??

[classics]

I used to find comfort in sitting in a sitz bath and then urinating right in the water. I haven't had to do that for a long time, so I must be getting better. I've been taking Elmiron for about 9 months now. Glad you posted a message. I didn't think anyone had symptoms exactly like mine. I.C. is a strange thing, symptoms are different for everyone.