Reposted for new member ups1986

[ICNDonna]

ups1986
Registered User


Join Date: Aug 2005
Location: Illinois
Posts: 1 Newby too

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Hi Millie & everyone else...I am new here too and appreciate all help!! My urologist thinks I have IC but says I need a cystoscope and hydrodilation?
Is this necessary, isn't treatment the same? I have been having bladder pain, low pelvic pain, nausea and tired...this is been going on since June. I had a flare up last fall but needed heart surgery so it wasn't followed thru on.
Help!

[Dixiefireball]

Hi ups1986 :welcome: to the ICN family.
the hydro/c is necessary to really see in the bladder to see if IC is there. its also to check for other problems.
Like hunner uclers if you have those they do have treatments for both. that is the good side.
in the mean time you may want to check out the handbook here on the ICN it is full of GREAT information on IC and treatments. It also has the IC diet there that has helped many people control there IC alone. However i personally believe you must have a something to coat the bladder lining in order for it try to heal (not cured)
there is treatments like elimron, dmso, and cocktail treatments.
I do wish you well and look forward to reading more post from you.
sending you hugs and prayers
Rhonda

[Katrina]

:welcome: to the ICN!!
The hydro/cysto is usually a good idea to help diagnose IC and can be a form of treatment for IC too. There is info on it in the handbook. Your symptoms pretty much describe my IC flares. Sure hope you feel better soon. Let us know if we can help you anymore. Feel free to contact me. :grouphug:
http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!

http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last one is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=11535 This is nexbie kit from the oldies to the newbies

[Ginny]

The biopsy is done during the Hydro & Cystoscopy to diagnose IC. Without a definite diagnosis the doctors would not be able to suggest treatment.

Ginny

[kelly McC]

Hello and welcome,
Just wanted to say Hi the procedure caqn help both with diagnose and treatment plan. If you haven't checked out the handbook its a great place to check out.. http://www.ic-network.com/handbook/ Good luck
Kelly

[tigger_gal]

~~welcome~~
A hydro and cysto is a true way to dx IC, it also may prove helpful to you.. Many use a hydro for a treatment, and it helps them for months.... I hope all goes well. keep us posted on how things go.
Brat

[Romans8:28]

My doctor has not made me do a hydro since it is no longer used consider necessasary for diagnosis. You can have IC and not have Glumerations or Hunner's ulcers. SS does not require it for diagnosis either. ICA did not recommend it either.
That said, I do not have insurance. In many ways I really wish I could have had done one early on to really know what's in there. I know I have all the pain symptoms etc. and that pain responds to instills Also in many ways the diagnosis process was much more involved for me and took longer too!

[emilyrose197377]

:welcome: to the icn . Cysto and hydro is the only way to see if you have ic.

[Romans8:28]

I don't want to disagree with you guys but according to Moldwin's book The IC Survival Guide: pg. 27-28
"Cystoscopy with hydrodistention of the bladder is consider to be the "gold standard"
technique to AID in diagnosing IC. There is a stress on the word AID here because a diagnoisis of IC should never be based on the results of this test alone."

"Clinicians used to rely on the presence of theses bleeding point to make a diagnosis of IC. Recent observations, however, demonstrate that the presence of glumerations doesn't always correlate with a diagnosis of IC. Yes, they are commonly seen in IC, but they may be present in patients without bladder disease. Furthermore many patients with the most severe form of IC, those with scarrred or shrunken bladders, have no glumerations at all."
He goes on to say both hydrodistention and PST test may be helpful but "diagnosis is made by putting ALL the clinicalinformation together." "The clinician cannot make the diagnosis of IC based soley on either of these test."
I think it was in the handbook that I read that about 10% of of IC patients actually hae no glumerations.
Also according to Moldwins book, pg.150 complications are rare but include urinary infection, bleeding, bladde rupture abd retention. Though the procedure may be very helpful, it is important to know and accept the risks too!

I have been through many other test and procdures to rule out other problems etc.

[Romans8:28]

I just put a search of this website on hydrodistention. Several article on ask the experts said that it can be helpful but diagnosis can be made by symptoms or with distention!

[ups1986]

Thanks everyone for your information!!! My first uro doctor suggested this, apparently I've had it for more years than I realized but this time is the worse and longest pain period I remember having! I am not thrilled with the hyrdo and cysto because I had "major" surgery in March and they had trouble waking me up!

Thanks again
Linda

[Annie2]

Romans did a good job of describing the diagnostic process. And it is just that, a process, and not just one single test. Unfortunately, we do not yet have one single and very accurate test for IC.

Some doctors insist that, along with your history of symptoms and tests to rule out other possible causes of symptoms, they want the results of a cysto/hydro to confirm diagnosis. Other doctors, and more of them now than in earlier years, are accepting the Potassium Sensitivity Test to aid in IC diagnosis. The PST is less invasive, does not require anesthesia and can be done in a physician's office rather than having to be preformed in a hospital environment. Perhaps you could discuss this testing option with your physician to see if it might be a good option for your particular situation.

[ups1986]

What is the purpose of the potassium sensitivity test? I took potassium after my heart surgery up until June 3, AFTER I stopped that and coumadin I started having these terrible symptoms!

[Annie2]

It is believed in IC patients the lining of the bladder, which is supposed to protect the bladder from being irritated by all the substances in urine, is damaged and allows irritating substances, like potassium, to pass through. When these substances pass through this lining, it creates pain. During the Potassium Sensitivity Test, a catheter is inserted. Then, one at a time, 2 solutions are instilled into the bladder. One solution is just sterile water. The other is a solution of potassium chloride. The patient then rates the discomfort they feel from each solution. The water should just feel like you have a full bladder but should not cause pain. If you do NOT have IC and the bladder lining is intact and doing it's job, the potassium chloride solution should not be irritating and should feel pretty much like the plain water. However, if the bladder lining is damaged (as in IC), when the potassium chloride solution is instilled, it will pass through the damaged lining and create discomfort or pain. If it does cause pain, the solution is IMMEDIATELY drained and a soothing, numbing solution is instilled into the bladder to stop the reaction from the potassium and numb the bladder. So if a patient does not have IC, they won't have pain when the potassium solution is instilled. If they do have this pain reaction, it is likely they do have IC.

Potassium is a very essential substance in the body and is important for your heart to function properly. I don't think taking potassium to help your heart caused you to develop IC. It is usually only a problem once the bladder lining is damaged and potassium is instilled directly into the bladder.

The advantages to doing this test instead of a cysto/hydro are that it takes only a few minutes to do the test, does not require anesthesia, can be done in the doctor's office and there is little to no required time to recuperate afterwards. You can read more about this test in the ICN Patient Handbook.

[ups1986]

Thanks Annie! Now I don't know what to do, I have had two different urology dcotors tell me I need to have this done???

Linda

[emilyrose197377]

I wish you luck if you have this done. I had it done and thought I was going to die.

[Romans8:28]

Linda, I think the point here is that whether you do it or not is personal decision! Do a search in the handbook on both test and make and educated choice!
At one point I had so much urethral pain, my doctor and I decided to do a dilation. That is a very controversial thing and many are VERY against it. I did it in full knowledge of the risk and therefore prepared to accept the outcome! At the time I was very glad because it significantly reduced my urethral pain. My doctor, from what I've read was much more gentle & kind, I think this helped.
Since that time I've found other ways to help those pain issues and truthfully I've had to admit my bladder pain seems to get more intense since..,so I can't say I would do it again but I'm not sorry I did it. I made the best decision I could at the time!
Study the information here and DON'T BE AFRAID TO ASK YOUR DOCTOR QUESTIONS.
From what I've read some get relief from them, while others do not! My one friend told me she got 10 years from her first distention! I know that is far from the norm!
Pray you have wisdom in your desicion! :grouphug:
Shelly