IC - Bladder Pain Syndrome

I went to my GP about a year ago because I had noticed I was going to the toilet a lot and my flow had slowed and I was feeling like I had to go real urgently. I reckon I had had frequency for quite some time maybe years and then urgency but not pain until about a year ago. I felt at that stage that my bladder was real irritated and I couldn't shake of the irritation. I had had a kidney stone about 6 months before and had a stone stuck for a few days and it was the same sort of feeling so I didn't worry too much. My doc said it was probably prostatitis and put me on antibiotics and did a test for bladder infection which eventually came back negative NO INFECTION. but it got worse real quickly. I went back about a week into the antibiotics and told him it was getting worse and the burning had intensified and I was having a lot of trouble emptying my bladder worse than before. He suggested we try another antibiotic which was stronger and specifically for the bladder. It was at this point that all my other symptoms started like, shivers, nausea, burning feet, migraine, and the worse burning bladder. After a few days on this new antibiotic I went back to the doctor and once again in tears and in pain and said things were really bad and getting worse - he suggested more antibiotics which I reluctantly took. I regret this now because my bladder became even more burning and reduced flow. After 5 weeks on antibiotics I got upset with him and with my wife in tow we demanded a referral to a urologist. This was another long wait and I was tested for enlarged prostate, prostate cancer and all sorts of other things. Finally I was given the option to have a cystoscopy. Another long wait!!. By this time I was not in a good way both physically or mentally, I had dropped 20 kg in 7 weeks and I looked a mess. The urologist assured me the cystoscopy wouldn't  hurt and as he stuck the camera in my bladder I remember screaming so loud they heard me in the waiting room. I asked him if this was normal and he said not really and went on his merry way. He said he couldn't explain why it was so pain full and prescribed some flow max and said go back to your GP. I WAS GOB SMACKED!! I tried the Flow Max and obviously it didn't work. I asked my GP for a second opinion and he finally took me seriously once he saw how bad I had become. In pain and peeing all the time I waited another 2 weeks to see another specialist who wanted to do another cystoscopy - I DIAGNOSED MY SELF> I told him that I thought I had IC and that I could not cope with another Cystoscopy so he said it was unlikely to be IC but he would do a hydrodistension and look for Hunners Ulcers.  I ended up in hospital for 4 days after the hydro and had to be catheterised as my bladder had stopped working at all. He said he couldn't find any hunners ulcers or Glomerulans and that it all looked normal. In his opinion it WAS NOT IC. All they found on the pathology he said was NON SPECIFIC INFLAMMATION. By this time I had dropped another 10 kg. When I went back to see him 2 weeks later I asked him about what I should do and he said to see a pelvic pain physio. I had already organised this myself about 2 months earlier. He gave me the usual ENDEP, a Bladder relaxant and more Flow Max, Elmiron and said come back in 3 months. I went off and tried them and had so many bad reactions to It all that I went into bad retention. I now have multiple chemical sensitivities, find most meds intolerable, even food makes me feel sick. I'm now on anti anxiety medication, Flow Max and I have tried instils which also left me with retention. I have since seen another 2 urologists who are kind of working together and they are real nice and have been offered a different instillation with anaesthetic in it and Next week I am also booked in for Botox . It didn't have to get this bad, it all went off the rails in the beginning when I was given repeat scripts of antibiotics which quickly made things worse.

Oh bless you dantheman. We know how you feel, this horrible condition is so debilitating. This is why we need this cure asap. Too much pain and suffering and feelings of hopelessness is enough to drive anyone crazy. Have you found anything that eases your pain?

No, we are trying Instil of Heparin lignocaine and Marcaine tommorow

How are you doing? Do you still have burning feet? And what did they say caused them? Did you ever take Cipro? I have been told that it can cause neuropathy of the feet. I didn't check it out. You seemed to be a crack researcher, so thought you might want to check it out. Let us know how you are doing...our cause NEEDS people like you. You hang in there!

Yes i find i have trouble regulating my body temperature which is probably caused by The whole pain brain response. Pain affects so many parts of the brain and body. I've probably taken cipro but not for long enough for it to cause neuropathy. If i can get my bladder under control the rest of body should follow.

I have read so much over the years I don't trust my memory, but I do believe I read that redheads have trouble with fluctuations in atmospheric temps...a genetic thing. One degree too high or low does me in. Makes me hard to live with, but some guys love redheads, thank God for that. I am just so tired of myself and the never ending miserable pain.

Hi Dan, how are you doing ? Have they tried vesicare or Oxybutinin ?

I have come to the conclusion you have to fight this rotten IC and that is exhausting, mentally and physically. Thank God you are the sort of person who has the intelligence to do the research. If there is one thing I have learnt about all this it is that we must be informed and we must be prepared to say NO if offered something we think is going to make us worse.

I am still battling with Oxybutinin, I finally have it at 1/4 tablet morning and lunch and 1/2 at dinner, still have a bit of a headache but nothing compared to when I started this drug. Combined with Vesicare it is taking the edge off the frequency and urgency. I hate taking drugs but my life has reached a point where IC is totally stopping me from having any sort of normal life, so I will just keep trying different thing.

How did you go with the Botox ? I have heard horror stories about what it can do.

It didn't really do much at all. Same as before. My car is complex and worrysome. I'm so glad that the oxy is working for you. Yes I've tried the OAB meds before but they didn't work for me.

Dan have you considered sending urine samples to the US to have Level 2 testing done ? I am battling doctors to get help but now I have black and white evidence of bacteria, I feel more empowered to discuss treatment.

Hang in there Dan we are all here to support each other and together we will get through this at some point hopefully in the not to distant future.