New....1st Post

[Mimilopez]

I posted this somewhere else but I think I should have put it here....

I have been reading posts on this network for a couple of months. The size of my bladder is exactly what has me confused....or, it seems my urologist confused.

After half a dozen UTIs in the last 5 months, and three different antibiotics, my regular doctor said I was resistant to the antibiotics. I saw my urologist (have been seeing him for a year due to stress incontinence....have had that for about 4 years and seen another urologists prior. I have been taking Detrol for the past year....didn't help tremendously with the stress incontinence, but a little.)

My current urologist listened to my symptoms and then said he suspected IC. He told me to start taking tremendous amount of Vitamin C.(???)vWhen I told him about painful intercourse, he said that has nothing to do with IC! (That's when I started researching IC). He scheduled an ultrasound and for one month, he had me go in each week for four weeks, to leave a urine specimen. When I met with him after the month, he said I had a UTI again, but my ultrasound showed my bladder to be of normal size and capacity, so he said I didn't have IC. When I asked about my symtoms, he didn't seem to know about anything I had learned about IC! He is older, but he is the head of USC Transplant Center. He was so weird about it.

Anyway, He just prescribed twenty days of Cipro. I was stunned and went back to my reg doctor. By then, I began having worse bladder spasms, frequency, back ache and low grade fevers. My reg doctor prescribed Levaquin (sp?) and scheduled a CT scan of my stomache and pelvic. One week later, I still feel awful, pain, fever,etc. but she said the CT showed all is normal.

Does this mean a CT scan and/or ultra sound don't show IC?
Does this mean ALL those who have IC have "small, shrivled bladers" like the uro said?

One thing I really wonder about is two years ago, the first urologist, who after a cystoscpy (sp?) showed no reason for stress incontinence performed silver nitrate instillations for a month to help with stress incontinence...could that have caused this condition??

I am waiting for a referral to a new urologist and in the meantime, elimiating lots of stuff from my diet.

I am in pain, and frustrated because all of these health professionals seem to be stumped or guessing about what the heck is wrong with me.

Feedback?

[leelee88]

First let me say hello and:welcome:

Second I am SO glad to see you are going to another URO, But when you get the referral I would call that UROs office and ask if he specializes in IC or treats it.. You will know right off if the clinic has knowledge of IC or not..
And if I am not mistaken, someone correct me if im worng. But I do not think IC can be detected by a ultasound or a CT scan.

I can not believe that URO told you to go home and take Vit-C.. Someone with IC that would cause all kinds of pain..

But I do suggest the IC diet and getting a GOOD uro who knows what they are talking about is the key to getting better with this awful disease..
Good luck and tc..

[GriffsMommy]

Wow, this uro really seems to have no idea about IC. People with IC usually can't hold as much as a normal person because it puts us in a lot of pain but alot of us actually have a normal bladder size. Some people after years and years of bad IC will have a smaller bladder from scarring and things.

I agree with Ronda, as far as I know you can't see IC on a cat scan or anything like that. Some dr's do a PST where they put a solution in your bladder to see if it burns and some do a hydro/cysto to diagnois a patient. My current dr does not think a hydro is needed and thinks it was a waste of my time that I did the hydro because he would have diagnoised me on symptoms and the PST.

I also agree that you should call around and try to find a uro's office that actually treats IC. Some uro's seem to know nothing about it and some seem to have a little bit of knowledge but only a few seem to really specialize in it. You could also check around for a gyn's office that treats it as some gyn's are starting to treat it more and more or a urogyn would be really good idea.

[ICNDonna]

I'm just glad you'll be seeing a different uro. None of the tests you mentioned will diagnose IC. They may be helpful because they rule out other things, however.

Donna

[TWINBURL]

I was diagnosed with IC a couple of months ago and I have a normal size bladder. I will also say that I have had symptoms of IC for about 10 yrs before being diagnosed.

When my uro did the cysto in his office, my bladder held 600 cc's. Then about a month later during my hydro I could hold 700 cc's. He said that he was very pleased with the amount of fluid I could hold and it has been his experience that his patients who had more of a normal size bladder respond to DMSO much better. I am not sure if that is correct or not but after 5 dmso instills I am so so much better. Have alot of pain free days and pain free sex.

My point is don't stop looking for a good uro until you find him.

[dverba]

my doctor did the PST. I had no idea what it was, but I just about came off the exam table when it hit my bladder. She diagnosed me right away with IC. Getting help is another story. I'll keep you in my prayers.
DeAnna

[Tracie]

hello:welcome:
I do not have IC, uro dx: Pelvic Pain Syndrome. I do have some pain in the beginning of intercourse. For this my uro did Trigger point injections in my Levitar Ani muscles, this has relaxed them. ( I was under for the Cysto. when she did the injections, although, some women get them while awake!)

All my pain is similiar to UTI. My urethra can just burn and spasm. I am not sure if your urethra bothers you, if it does, Uristat ( over the counter ) helps. Uro. got me on Macrodatin for 3 months! ( I guess she thinks incase of Urethitis) and Cystospaz stops the spasms. Also Elavil. So far I can tell that these meds. are helping.

I hope you find comfort in your new doctor. I am not sure where you live, but I can recomend a great uro. in SW Florida. She is great and I think she only is all female urology.

Tracie

[Claredale]

From what I read, IC is also being called Pelvic Pain Syndrome as well. I had the scans with dye and ultrasounds when my symptoms first started several years ago. They did find a couple small cysts on my ovaries, which they thought may be causing my pain. Those tests were not to diagnose me with IC. I had a cystoscope in my early diagnosis which showed mild IC and after I came out of remission and my symptoms of pain were greatly increased, the cysto showed that I had severe IC. Both were done under anesthesia. My doctor said that my bladder had alot of hemorages and scarring after my 2nd cysto. I never had any UTIs prior to my diagnosis and was only put on antibiotics after a treatment such as DMSO or after my hydros and cystos and my interstim surgery. But, when I explain IC, I explain it as a chronic UTI because that is the way people that don't have this chronic illness can understand it. The only time I had an UTI was when I was already in so much pain that I didn't even know it until they doctor told me I did. After that, I hoped every time I was in such pain, I had a UTI, but I haven't had one since.

Regarding the use of Vitamin C. I even tried Ester C recently and that was a huge mistake for me. I asked my doctor about it and he said since my main trigger as far as my diet goes is citrus, that he didn't think it was a good idea, but if I wanted to try it, it would be okay. After the first try, I was in pain.

T83

[Julie B]

Hi Mimilopez,

I am glad you are going to see a new urologist. Your experience about bopping from doctor to doctor is quite common in the IC community, although I believe it is getting better.

If you are unsure if a physician knows much about IC, you can always check the directory here at IC Network: http://www.ic-network.com/md/

I think treating IC is a lot like treating some cancers. If you get breast cancer, you want to be treated by the best breast doctor/surgeon/oncologist out there, probably someone who specializes in breasts. Same with IC. As you found out, not all urologists know much about differentiating IC from other bladder conditions. If you have IC, it will also be good to have a specialist since (IMHO) an IC doctor has aquired some intuition about treating this puzzling disease.

Hang in there..........nice to have you here!!

[gary6314]

For some time I have exhibited a need to use the bathroom at night 3-4 times. Needless to say I have not had very good sleep. My doctor sent me to a local urologist who did the cystoscopy and hydro test and told me that 800 cc's was way too much and that I should self-cath to keep it empty. The self-cath was painful and the pain lingered a long time. I contracted a UTI from the cysto and ended up in the hospital for three days with mega doses of antibiotics. Now the urologist wants to remove the prostate so I can empty better. He admits that at least 10% of the people with my "condition" having surgery don't improve and must self cath anyway. I have had an ultra sound to determine the size of the bladder now and it has reduced to 400 cc. The doctor says that is still too much. What I read here is that 400 cc is considered normal. I am planning to see another urologist for a consult but I am really perplexed.