Pain later on with IC

[Peggy Anne]

Has anyone started out having IC with just the frequency and urgency, and later on down the road started having pain? I've had IC for about 2-3 years and still do not have the pain. Im trying Heparin instillations to stop the frequency and to hopefully avoid getting the pain, but I really don't know what to expect. I don't want the pain to just all of a sudden start and not be prepared for it. From the comments people are posting, I am terrified! My mother has quite a few serious problems and is in pain all the time and I see how people treat her, they just don't understand and don't believe it can be that bad. I can just see my husband and family doing that to me.... Thanks for your input! Peggy <img src="graemlins/eek.gif" border="0" alt="[eek]" />

[Judith]

I had IC all my life and my main symptom was frequency. I eventually needed to have my bladder out because my bladder shrank so much and I also had other going on inside my bladder due to the IC. I never really had pain until about 6 months before they took my bladder out. I did have urethral off and on most of my life, but it never put me out of comission. Towards the end it did get bad enough that I asked for pain meds, but that was 17 years ago before they believed in treating IC pain so I just suffered. So to answer your question it took 30 years before the pain became horrible- hope this eases your mind. Do keep in mind thought that everyone is different- you may never experience pain. Judith <img src="graemlins/blink.gif" border="0" alt="[blink]" />

[Teri]

I have had IC all of my life. I remember the symptoms as a child but I wasn't formally dx'd until I was 44 or 45. I had a bladder suspension in 1994 and that's when the worse of the pain started.....up until then I thought pain was just a normal thing that all people lived with.

Had I not had the bladder suspension would I have the horrendous pain that I have suffered for the last 7 1/2 years????? Who knows [img]frown.gif[/img]

[CELESTRA]

H

[CELESTRA]

Hi Peggy,
I've had IC for 16 years. The only pain I experience is the pain of always feeling like I have to pee. It's more very annoying, discomfort,...like having and itch that you can't scratch...but as far as other pain...that, thank God, I haven't had..Hang IN there!!! I've also had years of remission too!! Celeste

[Yvonne47]

Hello Peggy:

I started with pain, on and off for 1 years then it became constant over the next 1/2 year. Then I started getting frequency. I went from doctor to doctor only to be told I had blood in my urine no infection. Finally I found a doctor at a walk in clinic that listened, and was eventually diagnosed with IC. I am allergic to Elmiron (severe hives)and my treatment regime is a Hydro/cystoscopy twice a year and B&O suppositories for pain. This cystoscopy gets rid of the frequency but not the pain. I have Hunners ulcers and I think they cause the pain. They are removed during cystoscopy but grow back. It would be interesting to find out if ICers have increased pain with Hunners than without.

Terri noted she had bladder suspension and maybe this could have caused the pain. Have you tried any of the oral medications for frequency? If not, would it be worth a try before the installations?

I wish that you will never get the pain and your frequency goes away.

<img src="graemlins/kissing.gif" border="0" alt="[kissing]" /> <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

[Morgan]

Heya,

My IC started out with frequency, then maybe a year or so later I started noticing a sharp pelvic pain, which I dismissed as a cystic ovary, then the ungodly urgency started, and pain worsened, so I decided I needed to go to the doc. I was Just diagnosed with IC, recently, after a potassium test, and then cysto/hydro. I have a diminished bladder capacity and the glomerulations, I don't think I have hunners, but then again, I didn't talk to my Uro after the surgery, my mom did. My fu appt is Jan 8th.
Anyways I guess I'm just saying yes mine strarted without pain. I'm hoping it doesn't get any worse...
Praying for a healthier bladder for you, hon. *hugs*

[littlebitic]

yvonne, I also have hunners.The doc explained hunners to me in laymans terms.He said my urine is like battery acid in a car.The acid ( URINE)literally burns the bladder,causing uclers.The bodys normal response is to heel.example If you get a cut on your finger the body automativally grows new skin to heal the wound.In the case of hunners the body also also trys to heel.Which causes scaring and schrinkage causing the bladder to lose capacity.Its a vicious cycle.painful YES,frequency YES,cronic Yes,
Doc tryed dmso,heprin,elavil,detropan,detrol,detrol la,and cysto,tums ,barcob and ic diet.I was diagnosed 9months ago.I do not take pain meds because I work full time.I dont do well with meds.Is there hope? I believe so .I just haVent hit on the right treatment yet.
In answer to your question.My opinion is yes hunners is more painful,but then again by the time I was diagnosed doc said I have only a bladder capacity of 1/2 teaspoon,was in constant pain,and was in pain 24/7. <img src="graemlins/eek.gif" border="0" alt="[eek]" />

[Christa]

I had frequency and urgency for a couple of months which has now turned into a year of constant pain. Not good!

[Peggy Anne]

Thank you everyone for the replies! I get really frustrated with the frequency but am very grateful that I don't have the pain. I've tried several oral meds but I am allergic to everything - now I'm injecting Heparin. But I'm also getting a bloody nose often and really bad bruises so I don't know if the doctor will keep me on that for very long. Someone suggested I try a natural remedy called Noni Juice. You never know, it might be worth a try since these medicines are not working!

[auntiedeb]

hi, I was in remisson for years and then all of sudden the ic and frequency returned. I have an overactive bladder and pain with it sometimes. I had bouts of kidney stones and utis over the summer and that is when it started coming back. I am not on any pain meds yet. I am on ditropan xl at night. I pee more in a day at work than at home, maybe cause I am under stress. I don't know. Today is bad day with the peeing. I am a cashier at Walmart in Walpole, Ma, and my left back usally hurts and the burning and pressure are bearable but when I come home I am tired. Hang in there and email me at [email protected] anytime. Deb

[sanctuary]

Yes, yes and yes..to all of that..At first I thought it was the post op pain from the catheter, but later it got worse and worse until I couldn't stand it, and thought about ending life,if it was going to be this way forever. But things changed when I got the right meds. and the right help. Still, I think because I have the Hunners that it's going to be worse then a typical flair. I've had so many surguries before my diagnosis. I have always thought each time I felt more pain that never seemed to get better after the surgeries healed. Glad you wrote about this subject. sanctuary

[chia]

hi everyone...i haven't been here fpr awhile , some names i reconise and alot of new ones...good to be back. first i also started out with the urgency first then the pain alittle later. someone else wrote about having a bladder suspension done then her pain got worse. me to. i thought i needed it because i couldn't hold my bladder excues me for saying but it was only during sex but i thought it was causing my pain ..wrong!!!! it only became worse, so if you ever think you need it done think about it twice. had IC for 5 years trying every thing i could think of to help but nothing did. i had such pain 24-7 never stopping. no pain meds worked either that i had tried . wish i would have known now what i didn't know then.. i had really bad luck with only one pain specialist so i gave up . i was so depresed i am so sorry i felt the way i did but i started becoming resentfull of my patients at work thinking at least they had the good pain meds and god forgive me but also thinking that at least they were lucky and would die soon..i had to give my job up i just couldn't think straight with the pain constantly. finally had my bladder removed in 2000 . i was actually pain free for 1 mon. then it slowly crept up on me again...i now go to another pain specialist that i thought i would really like but he after awhile and i had a spinalcord stimulator put in, he has decided not to up my oxycotin any more ,which i am sure is because of the crap they get about it. i am still in pain 24-7,only very little relief for maybe 2 hours if i am lucky..i had started taking so many ovt meds to go along with my meds that i have messed up my stomache for good now..so please beware if you are doing this. stimulator helps as long as i lie down and turn it up full blaste,so i have to decide which pain is worse.LOL. it sounds so great to think getting out your bladder will help but again i caustion you to think real hard. some it does help but not as many as it doesn't.. sorry so long but everything i read here fits my story to a tee and wanted to just say hi, and glad to be back..hope you all have luck with what ever you try just beware of what can happen . my prayers are with all of you. deedee angel

[Teri]

Hi deedee~I'm the one who had the bladder suspension that destroyed my life. When I had it done, I was leaking and about to loose my insurance....well, I didn't know I had IC cuz the friggin' dr (after almost 10 years) never told me. And, the leaking, for a 42 year old was pretty bad. Well, that day completely changed my life and had I called an attorney a couple of years sooner than I did.....I know I'd be just as sick as I am now but it would be in a much nicer house with a house cleaner and cook, shopper, everything that we need and just can't manage to do anymore. Instead, I am watching that dr build a HUGE building right around the corner from me, it's going to be fabulous. And I am reminded every time I drive by it that a part of is should be MINE.

Thank God for computers.....I don't have any procedures done anymore without investigating first.

[redstonebef]

Teri, I am sorry you have had so much trouble with your Bladder. My Dr. told me last year that the suspension would not stop the IC bladder pain because it was 2 different problems. I went ahead last March and had it done and a Hydro also. It took me about 3 months too really start to heal and feel better. I noticed I could walk and not feel like my bladder was falling out. But now I have noticed I think it has fallen again. Has anyones else did this. I guess I will have to go and see my Uro. He lives 3 hrs. away so I onlt see him once a year. Hugs to everyone.

redstonebef