questioning my diagnoses

[katie87]

I was diagnosed with IC last may, using the potassium test only. I have since been told i have PFD, fibromyalgia and IBS, as well as suspected endo. No one has seen the inside of my bladder, but I am on many medications, all with side effects.... I am starting to worry I am taking them for nothing, as in the past YEAR i have not improved pain wise at all. The only difference is slightly less frequency, but still abnormal frequency. I have other health problems that no one seems to care about, severe joint pains like I got hit in the joint with a hammer, migraines, scoliosis. The only thing worth caring about is the joint pain, because it is so bad. Migraines i am used to by now. Along with mental side effects from the meds, and i feel like I am just a guinea pig for them to try new meds on. My last visit I was told that now they "arent sure" what is wrong with me...... well then, why am I taking 6-9 meds a day??????????? They said that I had IC and treated me for almost a year, then last week they said quote " this is a mystery, we dont know what is wrong with you".... So Im basically trying all these treatments when there is no clear diagnosis. My main problem above all is "BLADDER PAIN" severe pain in the lower pelvis that has not stopped for 6 years.......... lasts all day 24/7 , problem is actual bladder pain and urethral pain, My symptoms are just pain and more pain, again it is located where the bladder is. I have blood in the urine which no one cared about, that could be a hint to diagnose me but they just ignored it, said it was bleeding from inflammation. So i am just really discouraged and upset that I'm on so many meds and its been about a year with no pain relief, now with no real diagnosis. Im scared we are missing the real problem, and its growing as time goes on.....

[ICNDonna]

If you're not feeling comfortable about your diagnosis, first of all I think it would be a good idea to discuss this with your urologist. And if you still have doubts, a second opinion from another urologist is what I would suggest.

Warm hugs,
Donna

P.S. it does sound like you probably have IC.

[yvette]

I'm wondering what kind of foods are you eating on a daily basis? :)

[leelee88]

The things that you have been diagnosed with do usually come along with IC..

I agree with Donna though if you are not happy with your Diagnoses I would talk to your dr and or get a second opinion. Also Yvette brought up a great point, Are you on the IC diet?

[KarenAnne]

If this were me, I would get a second opinion from another urologist associated with a different urology group. I would also ask for a script to get physical therapy for the PFD, & stay very strict on the IC diet, as previously mentioned.

I have the same things you do; ic,pfd,migraines,fibro,ibs, & am now having my family dr. keep an eye on all reports & my meds. It is too overwhelming to handle all this when you don't feel good, so it helps to have someone else manage things so that you don't "fall through the cracks". You can ask your mother, father, a sibling, a good friend, your family doctor, or a nurse advocate to help you with it all. Best of luck, Karen

[k_castle44]

Hi Katie... I too, questioned my diagnosis when I was informed that what I am suffering from is I.C. back in September. I was in denial for the first little bit because the medicine and diet did not seem to immediately take effect. I was prescribed Elmiron for my I.C. Is that one of the medications that you take? On Elmiron, I find it helpful to completely eliminate caffeinated drinks. I don't know if you use caffeine, but it's been very helpful in preventing pain for my bladder.

I used to notice back in my high school days when I would get "urinary tract infections" that they orginated from drinking caffeine. It's extremely hard at times and I sometimes (maybe once or twice a week, if that) allow myself to have a soft drink, but once you train yourself, it feels great! I also find that I have more energy when I do not drink caffeine, which sounds crazy because I know caffeine is supposed to give you energy but for me... it totally makes my body crash and feel gross now.

This may or may not be a problem for you, but I just thought that I would add my own personal tip to what everyone else is saying. I hope that maybe that will work for you even the tiniest bit because I know the pain you are talking about and it is unbearable. I would not be able to deal with it the way that you seem to from what you've said. Stay strong and keep your faith! Best of luck!

[jenjen05]

I questioned my first diagnosis with IC as well. I think its normal to want to believe you don't have a life long painful disease.

I went to a second urologist who performed all the tests possible. And I definately have IC.

If I were you, I would find another urologist, and get a second opinion. Get on google maps and search for someone with good reviews and if they have a website if it says they deal with IC patients often.

And ya know what? If you want a third or even fourth opinion, go get it. It's your health and your body. Same thing with your other medical problems. If you don't like the answer your getting or you feel like a medical professional is not listening to you, go find another one. I know this is costly, trust me, cause I've spent over 30,000 (or more accurately, my grandfather has) in the last two years trying to figure out all the stuff that has gone wrong with me. Don't give up and don't accept defeat. Keep looking for a doctor who will listen to you, do the proper diagnostic testing, and give you an answer YOU can believe. If you don't, you'll always be wondering, and that will wreak havoc on your overall mental health.

Best of luck to you. Keep in touch! I wish you pain free days and a diagnosis you can believe in and the right kind of help!

[L. Thomas]

I would get another opinion. Have you checked the site for MD's with interest or specializing in IC?

[mbhbarb]

I have many of the things you have, and the problem I find is that I often can't distinguish between pain from IBS, IC, and endo - especially since the endo has caused adhesions so when I have bowel activity I feel it in my bladder and urethra. It's hard to achieve these days, but if you can find a physician who will work with the specialists to coordinate your treatment for these different diseases you may end up with a more satisfactory result. Initially I was working with a gastroenterologist for IBS, a urogynecologist for IC, and a gynecologist for endo and it was very confusing. I found an internal medicine specialist who reviewed all of my workups for each of these things and suggested a more unified approach. I got peace of mind from it too because I felt like someone was taking in the whole picture. If you doubt what any of your doctors say, it's your body, you are experiencing this so you know better than anyone else what's working or not, I'd definitely get another opinion. Good luck to you.
barb

[katie87]

I do follow the IC diet in that i dont have soda, citrus,spicy foods, and fruit except rare occasions.. I have been drinking about 1 small cup of coffee, i sometimes do decaf, i know a lot of people find coffee a flare food, but since I have given up so much already it is hard for me... When I initially started the IC diet I lost 20 lbs dropping my weight down to 105.. i was very underweight and I am now back to about 110. I find that the IC diet is really taking away almost everything I eat, except meats and water.

I do see a great PT once a week as well. I think I know I have IC, but i feel like the joint pains are being ignored, so that is frustrating. My doc is brushing it off as fibro and i;m not convinced that fibro causes such severe joint pain. it is like getting hit with a hammer in my knee,, it throbs all day, then maybe the next day it is my right pinkie, then maybe one day it is 4 joints at once.. oh well at least i am getting medical care at all. I am greatful for that.

[ICNDonna]

Try thinking about dropping coffee as a temporary thing --- and at least try it for two weeks. If it's the coffee that's causing you pain, it would be well worth giving it up.

Sending encouragint hugs,
Donna

[musiclover]

Hi there. I know what you mean, I wasn't really sure about my diagnosis, either. I didn't even have the potassium test when they said it's IC. They won't do the potassium test at my HMO. They prescribed Elmiron, Nortryptiline, Zoloft, etc. I'm not currently taking any of them, just aloe pills and cystoprotek. Anyway, I am going to PT and have found I really do have pelvic floor dysfunction, as the biofeedback machine showed me exactly what was going on with the muscles. I have since realized that PFD inflames the tissues and nerves that lead to the bladder and once the bladder is inflammed, it becomes sensitive and all kinds of things can go wrong with chronic inflammation. So you probably do have IC, as all that means is inflammation of the interstitial lining of the bladder. That chronic inflammation may be why you had the blood in your urine and may have developed ulcers in there. I have only been doing PFD PT for three weeks or so, but already my flare up that lasted three months is finally dissipating. And I'm not so sensitive to foods anymore. I think in time with PFD therapy my IC may actually clear. I can't believe the progress so quickly. Maybe you should look into PT. It won't hurt, except maybe your wallet, but it's definitely worth a try. Oh, and two hot baths a day has saved me. And I never skip a day. My pelvic pain is 90% gone just from that. I started that before PT. In a month I felt a dramatic change in the pain. Also, self massage of my pelvic region where I have pain.

[musiclover]

I just noticed your second post. It looks like you are in PT. Have you used the biofeedback machine? It can give you some valuable info.

[Sally939]

I know how hard it is to give up what feel like everything. The good thing is that you will be able to add things back in time. Try giving up the coffee for a short time like Donna suggested. It might help and a small time will not hurt. I do not have fibro but I think it does cause bad joint pain. Have you tried lyrica? I heard it helps some.