Intersistial Cystitis (or bladder pain syndrome)

Hi Stephsmom, and welcome to the family. Just sorry pain brings you here.

I just looked up IC on the Mayo Clinic site and they said IC can happen to ppl dx w/ Fibro or other pain issues.

I have a lot of urinary issues but I haven't been dx w/ IC.

I have a problem w/ heat, humidity, dampness, cold, windy, rainy, etc. I don't do well in extremes. I like it 'just right'.

It is hard not knowing what is going on, but the drs run the many tests to be sure b/c FMS has many like qualities w/ other illnesses.

I hope you get an answer soon, then you can start a plan of action.

Hope you have a very good day, and again, Welcome!!

God bless.  Alice. 

I have had bladder issues all my life. I was diagnosed with IC as an adult. I also have a few other problems that go along with fibro. (thyroid, celiac, osteopenia, my issues with always being tired seems to be becoming on more and more lately.)

I really feel sorry for anyone with IC. Sometimes when I was having horrible issues with the IC, it was as bad as labor pains. I would have to spend nearly all night on the toilet just incase there was some flow.............thankfully those issues seem to be undercontrol for now. It comes in cycles. There is a diet you can go on for IC avoid spicey hot foods, vinegar, mustard and black pepper for a while. Once I would get things under control again, I could add the foods back into my diet. Thankfully since going gluten free, I do not have the IC as often as before.)

Pennstate, there is so much that I have gone through with this in my marriage, I thank the Lord for such a loving and understanding husband. He has had to suffer with me as well!

Since I had the last bladder tack.........actually the urologist used a piece of tissue from pig and tapped one end into my pelvic bone, lifted the bladder and tacked in the other end to my pelvic bone, I have been so much better with the IC symptoms! I thank the Lord for a very good urologist also!

When we were stationed in Spain, I had to go to the ER (nearly every weekend) for a while with sudden onset IC problems and needed meds for relief. The urologist that was stationed there at the time called me in for an appt. Since the infections were SO SLIGHT.... he thought that I needed to talk with a psychiatrist because it had to be 'mental'. I went home crying. No one if they saw me sitting with chills and the 'contration' feelings would say it was not real. My hubby knew it was real. Thankfully I avoided the Urologist and would see a dr. that was a member of our homeschool group. He gave me medication in sufficient supply that I treated myself when the onset would start. I had pyridium (turns your water orange) and nitrofuriton for the infection. I took 1 nitrofuriton daily for about 6 months.

Then after I got a kidney stone and had to see the urologist, I was crying in the ER..........I did not want to see that man again!!! PTL we had just gotten a new urologist and the old one was leaving that week. Dr. Berloit was a GODSEND! I ended up having to have surgery and while I was in the surgery, he blew up my bladder with air and said it looked like a collindar with all of the microscopic pin holes.

He said, no wonder your infections always seemed so small, your infections were in the wall of the bladder. He was so understanding and with his help I went into a 'remission' for a while.

When the bladder had dropped and I needed teh 2nd tack, I had started having the IC again. (Some of the 'contractions' were so strong it would make my bowels run at the same time without any control. My new urologist here in the states said that the same nerve controls both the bladder and the bowels so it made complete sense and NO I was not losing my mind that the 2 were tied together. LOL)

I know this may be TMI but maybe it will help someone that is suffering or someone to understand a loved one that is going through this.

I NEVER EVER drink caffeine tea. That will trigger an onset of IC within a day. I can drink caffeine in cokes and coffee, but it will never work with caffeine tea.

I did go through a time of wearing a patch for my IC problems of leaking and burning. I got to where I gag at the idea of taking a pyridium. I had to switch to the blue water changing pill. Urostat.

I always hate to say I have been pain free of IC because that always seems to coincide with another outbreak, but thanking I am managing my IC at this time.

I hope you get some relief. If you ever need to know where all of the bathrooms are located between Alabama and SC, I can point you to the good pit stop areas. LOL

Hi Stephsmom,

My OB/GYN has diagnosed me as "probable" for IC/PBS (in fact, I didn't even list it in my signature below since he's not really certain). I have the urgency and frequency issues, along with pain as my bladder fills. My doctor suspects that more of my pain is coming from scar tissue (adhesions) on my bladder, so as the bladder gets bigger when it fills, the adhesions get stretched and cause the pain.

Currently I'm not doing any kind of treatment for it - I'm on enough pills right now for everything else I have going on and I just don't have the energy to go get the tests done, etc. In fact, as sad as it sounds, I'd rather just ignore this and hope it goes away instead of doing anything - it's just too much to add something else on the "what's wrong with Pam" pile.

I hope you're able to get some answers about IC and that a treatment plan can be implemented for you quickly. I know how painful it can be, and for your sake, I hope it doesn't get that bad. Take care of yourself and know you're in my thoughts and prayers!

hugs,
Pam