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 frown.gif

[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 auntiedebbief@aol.com 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

[DeeMN]

Hi Peggy,

I was diagnosed with IC a little over 3 years ago. My symptoms started abut 5 years ago with urgency and frequentcy. The pain started about a year after the symptoms. I described it as trying to pass cut glass. It took me another year to find a Dr. who could diagnose the IC. He told me after I had my first cysto, that I had Hunners Ulcers and a very small bladder. I suffered a lot of pain for about 15 months, then went on El****, which has helped with the night time pain. I also had a hysterectomy last september and it has made the biggest difference in my pain level. I also have Cysto/Overdistentions about every 4 months. Watching my diet and trying to avoid stress at work (a joke) helps too. Knowing when your pain is getting out of control and taking steps to curb it also helps. Some people never experience any pain, just urgency and frequency. I can tell you that while the pain never goes away, it can be managed. Hang in there and let us know how your are doing.

[malin28]

Hi,

I just wonder what is a bladder suspension?

Best regards from
Malin

[kenzycodi]

I have IC with only frequency and sometimes urgency and burning. My frequency isn't bad, about 15 times a day when I'm in a flare. i can usually hold it for long periods if i want to, but i try to not do that. My doctor and my IC advocate said that if you take care of yourself your flares rarely get any worse than your first one and that it does not progress. i thought that everytime I had a flare it was doing more damage to my bladder. My doc says no. i do not have the ulcers. According to what I've learned the flares usually start then reach a peak and slowly taper off. That's true for me. I also read that if it does progress it does so quickly like over a period of 6 months to a year. Hope this helps.

[chia]

MALIN; hi..you can look up more about the bladder suspension on the internet but i can tell you this much i know..you will start to leak urine and sometimes have to wear a pad ..your bladder actually does slip down away into your vaginal area or close to it...you will feel as if your whole insides of your vagina is falling out when you stand or walk..if you think that you have this problem ..please get a second oppion before you have any tyope of surgery for it..someone else had said they had the surgery but the sytoms are coming back..alot of times for some reason you have to have the surgery done again ...i have had alot of women tell em they have had it done more than once..hope this helps..DEEDEE angel

[Teri]

When I had my bladder suspension is when the pain of my IC started.

Now my uro wants to put me thru all kinds of tests because he thinks that my bladder is too high and it needs to be clipped so it will fall some and allow the urine to flow so that I won't have to cath all the time, meaning maybe the infections will go away. But, there is a 20%
chance that I will leak more than I did before my suspension, which basically would mean I'd have to wear a pad all the time. I'm just not ready to go there yet. He doesn't know if it would stop the pain. No use being sliced and diced again again if it's not going to stop the pain:(

[sanctuary]

Teri, Just a word.."My Mom had that done,,,don't do it...get a second opinion from a doc not affiliated w/your current hospital..She had hers. "tacked up" to help that and is in hell all the time..it helps nothing, Moving it didn't change anything,,it "shrinks" because over time, "scarring" causes it to not be flexable any more and that creates the "small bladder" usually this business about small is scars, but mine was physically small anyway..as I am inside, but my Moms isn't. I hope this helps, we aren't all alike but sharing can help, sanctuary

[Silverfox]

Teri, Have you asked your Dr. If you could have autonomic nerve damage, causing your need to cath.
Do a search on that, before you try more surgery.

My Mother has autonomic nerve damage and has the same problem. You might be diabetic, Hypo thyroid or have MS they cause that problem. My mom has thyroid disease and she had trouble peeing before treatment.

I would search all other possibilities on this one.

[DebbieD]

Before I had my total Bladder removed I hav those Hunners Unclers. Then Months after the Bladder removed I still had a tremdous amount of Blood still in the Urine. Well Three Blockages later and 19 years with a Urostomy I still suffer Horrible Kidney Infections. The Great Dr. said it is a IC" Grem" That just lives and Breaths in the Urine of people of IC. so I will always have trouble rest of my Life. But At Least i do not have to yell Help I have tp Cath or Pee all the Time now. I do not Mind the Bag after all.

Take Care
Have a Wonderful Day. Live each day to the Fulliest and Have a Good time while you can, cause you never know what is around the Next turn.


DebbieD
ldurham@comcast.net.