Hi Beth,
While I could (and will) give you some good reasons to not do it, the stand-out factor here is what you yourself just said, that you're dreading it and want to give your treatments time to heal.  If this resonantes with you, it seems to be your inner voice, which is the most important voice to listen to and trust.
I'll still give my voice though, since you asked for opinions, and that is that cystocopy is done for the purpose of diagnosis. Helpful to doctors but not really helpful to you, esp. if you're going the alternative therapy route. If you're having IC-descriptive issues and pain, and other factors ruled out, you know you have IC.  Do you need a test (that could potentially make you worse) to prove it?  Even if the test proves it, how are you any further?  And sometimes you still have IC but the tests are inconclusive and say no; so then what?  Of course many docs want to do it so they have a quantitative assessment and are covered for malpractice, but that doesn't mean it's in your best interest.  I did much research on both Western & Eastern diagnoses, treatments, etc. of IC and I just don't see the purpose in it, esp when it can do more harm and really no good.  In fact, Matia could be much further in her own research if she put people under cystoscopies before & after to prove her treatment works but she won't do it b/c she doesn't want to inflict that suffering on others when (a) if they're having IC symptoms to start that's proof enough that they're imbalanced and need help and (b) if they get well that's proof enough that her treatment works.
But most of all, tune into your inner self. Sit quietly, ask yourself what is really the best route for me, and wait to see what comes up... and you don't always get a straight verbal answer -- sometimes a visual, sometimes a feeling, sometimes an emotion.  Listen to what your *heart* is really wanting and needing.

Hi Beth,I would be very surprised if you'll get any postive feedback on this subject here. My advice would be not to. I have talked to too many women that became much worse after having this procedure done. If you have the symptoms then you probably have IC. You've found the right place with this site and Dr. Brizman. Give yourself some time here to become informed and then decide. My two cents. Tammy

Welcome! I want to say that this is reflecting my personal opinion and experience. My first response to this question is based on the premise that our health and the choices we make regarding taking care of ourselves need to rest ultimately upon our own shoulders after research and asking questions- we have to live with the choices we make regarding our health. A urologist especially someone who doesn't UNDERSTAND or empathize with the pain of IC obviusly would never put thier patient at a possible risk for making their condition worse or possibly perforate the urethra wall with the camera. Its about you  making an informed descision about what is going to be best for your body What you are doing right now - by asking folks who have undergone the procedure and how they felt afterwards is really important to help inform you if this procedure is going to be a good idea. It might be but wait until you KNOW for sure. If you are dreading it than maybe that is a good enought reason to at least reschedule until you have more answers. I won't say don't do it - because I'm not someone who has enough knowledge of your case or of the procedures in general to say. I can only report what I think based so far on my own research into the matter.   A cystoscopy is an invasive procedure and from what I understand one way a Urologist can indentify IC- there are other ways to do this and some of those ways are also painful and invasive(potassium washes) - maybe Urologists also want to perform cystoscopies to rule out other possibilities for disfunction of the bladder but I do not know what those might be - find out and maybe if the urologist wants to test to see if there's a blockage or other issues there maybe they can do a procedure that does not involve a camera being threaded up the delicate and probably already irritated tissues of our most sensitive area. Maybe an Xray would do the same info or some other blood test or something. ask if people report being worse after the procedures?   I scheduled three different cystoscopies and I canceled each one of them out of fear of the procedure. I am THRILLED that I listened to my intuition on doing this. Some women report that thier symptoms got worse or new ones developed )ie some women just had frequency before and then they had frequency and PAIN  AFTER the procedure due to increased inflammation from the procedure itself. I ALREADY KNEW  from my symtoms being exactly or close enough to the symptoms describing IC that I had something in the realm of bladder/kidney disfunction. I didn't need to know whether or not an expert could tell me that "yep you definately are sick and something is wrong" I could feel it everyday that something was wrong and painful. Some women report pain and if the doctor can't see the ulcers that supposedly help diagnose  IC (sometimes the inflammation is not visible to the cystoscopy) than I have heard people report that they were misdiagnosed as not having IC when they truly did and they went untreated for a long time based on this misdiagnosis.  So I think it may depend on the person. My husband was amazed that I chose to get my IC treated without "official diagnosis. When I called Matia's office to get an appointment I was super happy to find out that she did not require a referrel or a cystoscopy procedure or some IC diagnosis before treatment with her. I think there are risks in my opinion in any invasive procedure- some of the ways that western medicine diagnoses and treats can have harmful and negative effects in the long term. IC is not so  much a bladder disfunction as much as it is a problem stemming from a chronic systemic imbalence in the GI tract gain IMO and my experience.  So when you get the GI tract in balence than alot of the problems with the bladder and urinary system are going to improve. If you wanted to rule out other possibilities for the bladder ( is there other things that it could be other than IC?) I never asked that question than maybe do more research and find out if there is a way to get a cystoscopy without risk of making things worse but in general I have honestly heard only negative feedback regarding this procedure. I am more of a wholistic approach person and beleive in western medicine more for emergency and surgery in the "I honestly need this- acute type situtations. Some people may have appreciated the cystoscopic diagnosis as an official western stamp of "so this is what it is that is going on with my body" reassurance. But I personally don't really think that ultimately western medicine has a good understanding of the potential causes of IC - understanding of what the whole picture or spectrum of accompanying symtoms could be nor do they have successful treatments that restore health other than  maybe possibly temporary symptom control methods available.  I usually observe from support boards that ICer's are usually on like 5-6 pharmacueticals to deal with thier symptoms and that's not very confidence building in that style of medicine. Listen to your body- get lots of feedback from folks who got it done.  It is fantastic to hear that you are getting releif from chinese medicine and acupuncture. If you aren't feeling totally better- (well that is relative you know- I have good days and bad days too and treatment can be long time before we are at the place of health we wish to be) then I would possibly check out treating with Matia. I am not paid to say things like that- I just feel like its a solid and good approach but then again it is not for everyone.  I got treatment with excellent acupuncturists and naturapaths but they did not have specific success treating IC and I did not get better -Matia has extensive experience treating IC that she has a unique approach to treating IC that restores balence to your whole  system. If your practitioner does that too- hallelujah- that is awesome! IC does not get enough attention in general and there is not enough information on the ways that people can benefit from diet and other healing methods. Most of us had to do alot of research to feel better and went online searching for more resources than a presription for elmiron and a depressing dismal diagnosis. Not having a cystoscopy also probably saved me pyschologically from having an authoritative voice -"diagnose as final word on matter"  and label me as having something  stagnant irreversible and "incurable." I didn't want to know if I had it at the time and maybe that helped me feel better not having that authoritative word as indirectly controlling my potential to feel better.  Does that make sense?   I think chinese medicine is about identifying patterns of imablence and disharmony- you don't necessarily always in every case need to identify the exact pathogen or diagnose the exact issue to get well. You know yourself you got something going on with your urinary system- IC has many many many faces and presentations and they don't always fit the perceived narrow western medicine's idea of what IC might be. does your acupuncturist have an opinion on the matter? What about your OB?GYN?Ask why you need the procedure done and what all your options are- do they think you need it to get well or is it just to satisfy their own curiosity about what it is? ITS YOUR BODY! It all seems unnessary to me and undermines the patients experience in a sense. Why do I have to prove that I'm in pain or suffering? Ask well if its not IC than what else could it be? What is the procedure going to tell you? It might just legitimize permission to have narcotic pain or certain types of serious drugs issued to you. I never got to ask so maybe if you asked that and felt comfortable doing so maybe you could get back to us and let us know what they had to say? - I would love to hear the urologists answer on the matter! Peace and healing vibes to you.Mary

This is a tough decision.  I guess i would base it on whether or not it is necessary to rule out even more serious conditions, like bladder cancer.  I have read recently that the test itself can possibly cause damage to the bladder.  I did have one done in 2002, and in a way it's been helpful to have that official diagnosis down on paper.  There were actually doctors and psychiatrists who did not believe I had a bladder disease until I told them I was put to sleep and they looked inside and saw the petechial hemorrhages and pinpoint bleeding.  Also, if you are wanting to apply for some type of benefits if you are unable to work b/c of ic, it may be helpful to have that official report.  Again, a lot to weigh in this decision.  icnot4me

 to have a cystoscopy is an invasive choice. A choice that is not really good for your body or nessacary to healing.
Reasons to have one
you have insurance and you plan on using western drugs to treat your IC.
to find cancer 
Reasons not to have the cystosopy
It can cause further complications just from the sergery alone.
there have been cases where the bladder wall has been damaged and a bag has to be used
bladder spasums after sugery are often present ( I had these for 3 yrs after surgery and never before it) I know i wasn't the only one.
Normally the test is inconclusive .
 
Now if you are choosing natural methods like those of us in the group you shouldn't need this test chinese medicine doesn't need tests to treat your bladder and the fact that your allready getting well leads me to believe that this test is a waste of your money and a proceedure that could possibly set your IC back. I know Dr. Brizman does not advise people to get the surgery and she can restore health from IC with out a offical dignosis.
wishing you good health
 

Babs,    I had a bladder distention/ hydroscopy followed by a potassium sensitivity test and a bladder wash.  In the morning, I had a mild case of IC(mild pain ) and had a severe case (terrible pain) by the time I left.  The pain never went away and I was put on narcotic pain killers.  At the time, I was working long hours and didn't think much of "going in for a few tests."   I didn't have anesthesia and it was a very tramatic experience.    Wikipedia mentions a great alternative to having painful, invasive diagnostic procedures.New :  Diagnosis has been greatly simplified in recent years with the development of two new methodologies. The Pelvic Pain Urgency/Frequency (PUF) Patient Survey, created by C. Lowell Parsons, is a short questionnaire that will help doctors identify if pelvic pain could be coming from the bladder.[10]    Old:   The KCl test, also known as the potassium sensitivity test, uses a mild potassium solution to test the integrity of the bladder wall.[10] Though the latter is not specific for IC/PBS, it has been determined to be helpful in predicting the use of compounds, such as pentosan polysulphate, which are designed to help repair the GAG layer. The previous gold standard test for IC/PBS was the use of hydrodistention with cystoscopy. Researchers, however, determined that this visual examination of the bladder wall after stretching the bladder was not specific for IC/PBS and that the test, itself, can contribute to the development of small glomerulations (that is, petechial hemorrhages) often found in IC/PBS. Thus, a diagnosis of IC/PBS is one of exclusion, as well as a review of clinical symptoms.  On a positive note, I am in treatment with Matia and have hope that I can overcome IC.