Why does Dr. Parsons FEELS that hydrodistention is an outmoded form of DIAGNOSIS

[bluetou]

So I found this to be very interesting, I was reading on the IC network an interview done between Jill Osborne (icn founder) and Dr. C. Lowell Parsons, Md.

I found this to be a very informative interview and really opened my eyes up.

He (dr. parsons) was answering a question which was "can someone be diagnosed with IC if, durig hydrodistention no glomerulations were seen?

HIs response: IT'S BEEN KNOWN FOR 70 YEARS THAT 40 PERCENT OF PATIENTS WHO WERE HYDRODISTENDED DO NOT HAVE GLOMERULATIONS BUT CLEARLY HAVE IC. TO ME, THIS IS AN OUTMODED FORM OF DIAGNOSIS. FOR UROLOGISTS WHO ARE REMOTELY CONSIDERING CYSTO UNDER ANESTHESIA DUE TO THE SYMPTOMS WE DESCRIBED EARLIER, THE PATIENT HAS A 99 PERCENT CHANCE OF IC. WHY BOTHER??? IF YOU PAY ATTENTION TO THE NUMBERS I TALKED ABOUT ABOVE, NOT EVEN ONE PERSON IN A THOUSAND TODAY IS EVEN CYSTOSCOPED FOR DIAGNOSIS. SO AGAIN, WHY BOTHER. IT IS ANCIENT METHODOLOGY TO DIAGNOSE IC AND I HAVENT DONE IT FOR MORE THEN 12-13 YEARS.

I guess I read this, and think to myself!! My urologist insisted he do one, cystoscopy and under anesthesia!! I cancelled this appointment twice...thinking, and RETHINKING the entire procedure....wondering what I would get from it....i still have yet to have it done....rescheduled for february...and again I WILL probably cancel this appointment....what is the point? TO be told the procedure showed nothing...but indeed I have ic? ...and then...

ALL I kept thinking was....I will probably FLARE from it....the percentage of women/men that have IC a small percentage gets diagnosed...the other is unfounded.
YOUR PELVIC FLOOR muscles contract during this procedure with further ENFORCES PFD.
...the list goes on....

I guess what I am saying is.....why are not more of us educated on this information...why is my urologist not on top of this information....for me personally, I think it is unfair that women and men go through this procedure and the IC may be still unfounded due to some of us not showing signs of IC during the test...but we STILL HAVE IC....

Now maybe most of you already know this information....but this info was an EYE OPENER FOR ME!!

TO me this procedure is not a fair way to place us the people with IC in comfort with trying to handle our condition.

Anyway...I just wanted to share this info...some of you may have already read it...some of you may not have...the link is below to the interview...


http://www.ic-network.com/guestlectures/parsonstranscript.html


Peace
Blue
:pray:

[ICNDonna]

Some doctors prefer to use hydrodistention; others prefer other methods for diagnosis and treatment. I honestly don't know why they make their decisions, but am glad that different doctors can have different views on diagnosis and treatments.

I was diagnosed by hydrodistention.

Donna

[nottoc4]

My GYN used the Potassium Sensitivity test on me.

[leelee88]

I was Diagnosed with a Hydro, but I wish I would of had better knowledge of it before I had in done. The way I look at things now. Is with ANY procedure I recommend that you have a good relationship with your Dr and trust his judgement as well as yours. And always remember, that it is YOUR body and you can make the decisions weather you want something like this done or if you would rather go another route. I think it is good that you are doing research and getting all your facts..

I did a pole awhile back on this and it was like 50/50.. 50% it made better 50% it made worse.. And I think some said there was no improvement at all..

[sedavisoes]

I was not only diagnosed by Hydro but it also put me into remission. Sue

[Annie2]

Dr. Parsons is highly respected and one of the leading experts on IC. He is far from being the ONLY one, however. Not all experts agree with Dr. Parsons. With IC there are so many unknowns there is bound to be disagreement among researchers and experts in the field. So what is the average practicing urologist (not an IC expert, but in the community running his own practice) supposed to believe? Does he/she follow the beliefs of Dr. Parsons, or does he/she follow what another expert proposes? Because there are so many unknowns with IC, there really can't be treatment or diagnostic guidelines that are set in stone. The average physician must stay on top of research, but follow what he/she truly believes and has experienced to be the best treatment for his/her own patients.

We as patients do need to be as informed as possible about our condition so that we can better discuss diagnostic methods, medications and treatment options with our own physicians. In the end, we are the ones who hire our doctors. If we have good reason to disagree with a doctor, we always have the option of going to another whose beliefs are more in line with what we believe to be best for us.

Before I was diagnosed, I read the transcript of the guest lecture with Dr. Parsons which you quoted here. I read quite a few articles with opposing views, too. I understood that cystoscopy with hydrodistention sometimes has therapeutic benefits for patients and, for those patients, is an excellent treatment option. I discussed all this with my own urologist. He happens to agree with some of Dr. Parsons beliefs, but not all. Since there is no extremely accurate test for IC, some doctors choose to diagnose by eliminating all other possible causes for symptoms and don't feel further testing is necessary. Other doctors feel that having either the cysto/hydro or potassium sensitivity test, though neither one is close to 100% accurate, helps with diagnosis. My doctor and I agreed that, for me, the best thing was to rule out all other possible causes and then confirm the IC diagnosis with the PST. We chose to save the more invasive cysto/hydro option for later to be tried as a treatment option should I not have success with meds and other less invasive treatments. That was what was right for ME. It's not what is right for everyone. Some do benefit from the cysto/hydro and some do feel better with the further confirmation a biopsy done during the cysto/hydro can bring.

Won't it be WONDERFUL when we do have an accurate, non-invasive and non-controversial test for IC and this diagnostic procedure decision is no longer a problem?!!!

[snowgirl]

I could never be a patient of Dr.Parsons. I get hydro's every 6 months and a I go to the pain clinic for pain managment with opiates. These two things he is not for. Different md's, different medical training, different residency training, different views. VN

[BT2008]

This is just my two-cents worth...but my urologist highly suspected that I had IC after just talking with me for 5 minutes (and having a clear urine test, of course).

He wanted to do the cysto/hydro -- not to confirm that I have IC -- rather to gauge the extent of my bladder damage.

Also, knowing that I definitely have multiple glomerulations has helped me understand better the nature of my pain (or, rather, my various types of pain), as well as the nature of IC in general. With a "visual picture" in my head, I can "see" better what is happening inside my bladder and understand where all the horrible pain is coming from.

So, it may not be "necessary" for diagnosis, but I am still glad I had one. (I would not look forward to having another one though, because it tripled my pain for a few days afterward!)

Anyway, again, this is just my two-cents worth.

~Beth