after 12 years of IC.... and he's not sure???

[Daisy Mae]

I usually see a urologist in a huge hospital 25 minutes away. Recently decided to get a uro closer to home (5-10 minutes) for those times when the IC is so severe that a 25 minute drive is not possible. (Yall know what I mean, right?)
I went in and told him my situation. He said "First we must do some testing to determine if you really have interstitial cystitis." I assured him that I do and would bring all my records in.
He then asked if I've ever had cystoscopy with hydrodistention. I said of course, at least every 18 months for the past 12 years. He asked if I've had biopsies. My answer was yes.
He asked what treatments I've had in the past. I listed them:
Hydrodistentions
DMSO - many, many times
pyridium plus
tagamet (for acidity)
levsin (for spasms)
rescue instillations, such as lidocaine
pain medications
spinal cord stimulator (no longer implanted)
He asked for symptoms, so I answered:
burning
spasms that bring me to my knees
severe retention
voiding up to 25 times in a 12 hour shift
He then said "I'm still not absolutely certain this is interstitial cystitis. We need to do a real biopsy, a more definitive one."
He called it a "cold punch biopsy" and said we can do it during cysto/hydro.
They punch a hole in your bladder wall. With something cold. :help:
I don't understand. After 12 years of treatments, symptoms, flares, and remissions, I have no doubt I have IC. I've been through periods of denial, where I would have gladly accepted hearing someone tell me I didn't have IC, that it was all a mistake. This is not one of those periods.
So I started crying. He then began to comfort me, and try to figure out where I was coming from, I suppose.
He told me I do have a very damaged, deformed bladder. (I had an IVP and urodynamics done last week.) He said that there IS something seriously wrong since my max bladder capacity while awake is 124 cc's. He also told me what I already know, "You will never have a normal bladder. You will always have pain, we cannot cure this, but we can make it easier to deal with. There are things we can do. We need to talk about Elmiron." etc etc etc
Perhaps I am reading it wrong. Maybe I didn't communicate well with him.
But, I am a nurse, and it is my job to communicate with physicians. I don't know how I could have been more clear.
Has anyone ever had a cold punch biopsy? I do not feel good about anyone punching holes in my bladder.
Thanks for any response you can give me.
DonnaRenee

[marsi4]

Hi, you know that you have ic as you have had symptoms for 12 years and you have had cysto's with hydro dystention which indicate that you do. If this new doctor agrees that your bladder is damaged and your pain is coming from your bladder I don't see the need for this test which I have never heard of and neither has anybody else had this type of test done here on the board. I would not let him put a hole in my bladder to make a diagnosis because he will only further damage your bladder and elmiron will not do anything to help repair further damage. Why would anybody in their right mind want to further damage an already damaged bladder? Your symptoms are only going to get worse after this test which is unheard of. Please you already have a diagnosis and symptoms that go along with your diagnosis of IC. Don't let anyone do this to you. Please don't let him punch a hole in your bladder just to confirm your diagnosis. If you've done all the necessary tests and doctors have ruled out any other pathology then judging by your symptoms and the condition of your bladder you definitely have IC. Please get another opinion before you let this doctor further damage your bladder and put you in more pain and misery. I'm so sorry you are in a lot of pain and you are my age too which is still quite young. Are you still able to work? If it gets any worse I would definitely consider surgery because I've had this disease since childhood and as you know it never goes away. Sometimes surgery is the only option that could end one's suffering if everything else has failed. I'm considering it myself if I could find a doctor who will listen, and understand. Please let me know what happens. Feel free to send me a private message whenever you want.


Marsi4 :)

[Katrina]

I have never heard of that. I would be catious that he isn't trying to find a way to make some money. I will look into that biopsy. :grouphug:

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[Daisy Mae]

Thank you so much for your responses! I just kept feeling like something isn't right. Only those of us with IC know how protective we can be about our bladders, and it helped me to know yall wouldn't want someone punching a hole in your bladder linings either. I'll keep you posted as to what I find out. In answer to your question, marci, yes I am still able to work. It's very hard on my body, however, because I am a nurse and I work 12 hour shifts in the hospital. Even my co-workers can't fully understand the extent of this disease, face it, in nursing school there was a paragraph about it in our textbooks. How crazy is that?
Thanks for being there, yall are great!

[Katrina]

biopsy

Punch biopsy: A biopsy performed using a punch, an instrument for cutting and removing a disk of tissue. For example, a punch biopsy of the skin may be done to make the diagnosis of a malignancy. See also: Skin biopsy.

cold cup biopsy, cold biopsy, Biopsy- punch
Biopsies from Swedish patients are large strips of bladder including half the depth of the detrusor muscle versus the biopsy in the US or a cold cup biopsy/forceps biopsy (small snips of tissue) it is suggested that the US uses these methods due to one day surgery.

The US study included 84 patients:


74 patients had forcep biopsy
8 patients had partial or total cystectomy
21 of these patients had characteristics of ulcer type IC
41 had nonulcer IC
20 patients the biopsies were either completely normal or other bladder conditions were found
9 patients may not of had non ulcer IC
Quoted page 147

'The main differential diagnosis in IC seems to be eosinophilic cystitis, and six patients were diagnosed with this condition, three men and three women. Clinically, the symptoms may be indistinguishable from those of IC. However, eosinophilic cystitis is a true pan cystitis, in contract to ulcer IC. Muscle necrosis is typically present, and inflammatory infiltrate 'spills over' into the perivesical fat and contains a significant number of eosinophils.'

http://www.ic-network.com/sant/sant18.html
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Retrieve&list_uids=9817375&dopt=Abstract
http://www.ic-network.com/askthemd/auacomments.html

I am getting somewhere by searching just cold biopsy without quotes.
http://www.ichelp.com/FeatureArticles/TrackingDownTheCausesOfIC.html

You may want to find out for sure what he is trying to find out. Will this really effect the treatment plan....is there something he feels he need to exclude as a possible diagnosis...or is he more interested in cause of IC kind of research?

I know when I had a urologist want to do more tests instead of treat it upset me a lot. :grouphug: I hope this helps you. :grouphug:

[vm]

I sure don't know what to tell you.... Are you still a patient of the first uro you mentioned, too? If he knows you have seen the second guy - maybe you can run all this by him????

[ICNDonna]

It sounds to me like you aren't really sold on this new urologist. If you're happy with the one you have, 25 minutes isn't that bad. We live in the country and we're at least a half hour from any doctor.

Warm hugs,
Donna

[hiphuray4peas]

I found this on the ICA, it's a question from a patient to a doctor.
Question:
"27. I had a hydrodistention and it showed glomerulations (hemorrhages) in the lateral walls, yet a biopsy did not show evidence of IC. What is the role of biopsy in diagnosing IC? What can it show? Is it essential?"
Answer:
"Biopsy cannot diagnose interstitial cystitis and is often not helpful as a diagnostic tool. It has also not been found to correlate with the severity of symptoms. The only reason I would biopsy is to rule out the possibility of cancer. Diagnosis of IC is made by the combination of symptoms or urgency/frequency in the absence of any other cause of these symptoms such as infection, radiation, cancer. I no longer use hydrodistentions for diagnosis, but in up to 60% of patients it provides relief of symptoms. Therefore, it is often done as a first line treatment. Hydrodistention works well in about 60% of patients. As it's used repeatedly, it becomes less and less effective. In your case it gives 3-4 months of good relief of symptoms and in that respect it's beneficial. Can it harm the bladder? It does not appear to, although there is often a worsening of symptoms which can last a few days to a few weeks. In theory, however, hydrodistention disrupts normal nerve function for a period of time. There is also a small possibility of of a bladder tear or perforation from the cathether. Perforations heal on their own and do not requrie surgical repair. In any event, careful moitoring with the cystoscope can prevent bladder perforations during hydrodistention. For patients who respond to hydrodistention, they also respond to drugs like intravesical heparin and/or oral Elmiron if used for a prolonged period of time (6-12 months). These questions are dealt with in more detail in the Winter 1996 ICA Update.

C. Lowell Parsons "

The doc is an MD PhD who does research specifically and only for IC. (He's my doc and a very good one at that....)
I hope that helps you somewhat...

[Daisy Mae]

Thank you again for all your helpful responses. You have no idea how much it means to hear your input. Yall are great!