Confussed about my diagnosis?????

[Just Mary]

I was diagnosed Monday with IC, without any tests performed. Does that seem strange? He is the best urogyn in the area and I have hear a lot about him (all good). I really haven't been having much pain or cronic UTI's. I went to my OBGYN last week for my yearly, and we talked about my worseing rectocele (hernia in rectum/vagina). I also mentioned my trouble and frequency with urination. He sent me to this urogynecologist. I had to keep a bladder diary (20+ times a day) and he did a pelvic. I have several tests lined up this month.

He said that my pelvic muscles are constantly contracted and that I need physical therapy to learn to do reverse keygles. I also have a deficatgram scheduled. I also have to go once a week for bladder injections.

He put me on the IC diet, and I haven't noticed any changes.

Well, my daughter is bugging me so I have to go.

Does this sound like IC to you guys???

Thanks,

[jen_dahling]

You will definitely hear that a cytoscopy/hydrodestention is the normal procedure for diagnosis from the most experienced ICers here. I, however, haven't had one yet and I was dx last May from my uro. I have had problems with my insurance, flares, and various other timing problems, but my uro still thinks that I have IC. I have been on elmiron (oral) therapy, elavil, & flexeril since my dx. I do feel lots better. Also, don't give up on the diet. What may work for one patient will not for another. I'm sure you will find foods that you can/can't eat. Of course, you can always get a second opinion or insist to your uro the importance of a cyto/hydro to make sure you have the classic bladder signs. Good luck!

[Just Mary]

it is scheduled for Wednesday. On Tuesday, I have my first injection of I don't know what. I wonder if I should have my cysto before the injection?????

What exactly does the diet help with? Is it pain only or frequency?

[Sarojini]

Are you having a cysto done in the doctor's office, or are you having one done with hydrodistention under anesthesia at the hospital? To me, it sounds like you are having one done in the doctor's office. In that case, don't be surprised if the doctor tells you your bladder looks completely normal. This does NOT mean you do not have IC. All it means is that you have no polyps or tumors. In order to know if you have IC or not, your doctor will likely schedule you for a second cystoscopy at a later date -- this one will need to be done under anesthesia at the hospital, because your bladder will need to be over-distended and that would be very painful if you were awake. The reason is that the pinpoint bleeding and other signs of IC are only visible after distention of the bladder.

The other way to test for IC is to instill a potassium solution into the bladder via catheter. If you react to the solution with pain or a desperate urge to pee, then you likely have IC -- this is called the potassium sensitivity test (PST).

As for your instillation, I think it should be fine to have it before your cysto, although you may be in some pain after the instill depending on what medication they are using. A bit of advice -- call the office and ask the doctor what they are planning to put into your bladder, and what it is supposed to do, and WRITE DOWN the answers. It is YOUR body, and you have a right to know what someone is going to be putting in it!! You need to be proactive about your treatment, and you need to be involved in it -- I find that if I don't make a point to know EXACTLY what is going on with my treatments, I end up feeling helpless, and that is not a good place to be. I don't want to see you in that position :grouphug:

On to the diet -- most say that it helps with BOTH frequency and pain. However, it can take several weeks to notice a difference, so stick with it and don't give up. I know it's hard, but it may be VERY worth it for you in the end. Generally, after 4-6 weeks, you should know many of your "trigger" foods... and you should be doing well!

:)

[jen_dahling]

On to the diet -- most say that it helps with BOTH frequency and pain. However, it can take several weeks to notice a difference, so stick with it and don't give up. I know it's hard, but it may be VERY worth it for you in the end. Generally, after 4-6 weeks, you should know many of your "trigger" foods... and you should be doing well!

:)

I have to agree 100%! It takes time, but give it a chance bacause it is well worth it!

[JAMIEL]

I have PFD (Pelvic Floor Dysfunction), rectocele and a questionable IC diagnosis. I did have a cystoscopy with hydro by my first uro and my present uro (an IC Specialist) diagnosed me with PFD & rectocele. He is not convinced that I have IC but does say that my pelvic pain, urgency, frequency (I go about 25 times a day) all can come from the PFD. The rectocele adds to my constipation which in turn aggravates my pelvic floor muscles. I will be starting pelvic floor therapy in about a month. There is quite a bit of info on this site about PFD which you may want to take a look at.

Lots of Hugs,

Jamie

[David White]

Actually,
I too was diagnosed with IC with no actual tests done. Well, i kept having blood in my urine and having severe episodes with pain that over a period of time became constant. My reg. physician done a ultrasound and then sent me to a Urologist. I described this to the Urologists on my first visit and when a cysto was done, I had severe IC. She immediately put me on pain meds. and told me about IC. Eventually, I had an interstem unit installed, this was a very painful procedure and did nothing for me. And five,years later, here I am. Still on pain meds. and still having flare-ups. I hope everything goes well for you. If you need me, email me anytime. DuztyWhyte@aol.com

[dilton]

I was diagnosed Monday with IC, without any tests performed. Does that seem strange? He is the best urogyn in the area and I have hear a lot about him (all good). I really haven't been having much pain or cronic UTI's. I went to my OBGYN last week for my yearly, and we talked about my worseing rectocele (hernia in rectum/vagina). I also mentioned my trouble and frequency with urination. He sent me to this urogynecologist. I had to keep a bladder diary (20+ times a day) and he did a pelvic. I have several tests lined up this month.

He said that my pelvic muscles are constantly contracted and that I need physical therapy to learn to do reverse keygles. I also have a deficatgram scheduled. I also have to go once a week for bladder injections.

He put me on the IC diet, and I haven't noticed any changes.

Well, my daughter is bugging me so I have to go.

Does this sound like IC to you guys???

Thanks,


Hi Mary, I had about given up on this website becuse nothing I was reading sounded like my problem ans I was also recently told it was IC...I have doubts that I actually have IC, Much of what everyone here has written does not apply to me. Your post caught my eye because I also have contracted pelvic muscles, I had some therapy for that a couple of years ago, but it did not help. I do not have bladder or pelvic pain except when I urinate..Then it is very intense, like a razor being sliced along the urethra...30 years ago, I had a very tiny cyst on the inside of the urethra opening...that is when the pain started..I have been to many urologist and no one was able to bring me relief...no one even tried meds till a few years ago when my bladder starting to weaken and I was having to go to the bathroom 18-20 times a day, mostly at night, which even with meds is still a problem, so I never sleep good and am always tired...I wondr if my doctor is just labeling me with IC because she doen't know what else to call it and IC might be a kind of catch-all that if you meet even just one of the symptoms, they put down as having IC...I would be interested to hear what tests and the reverse keigle therapy is like and if you find it helpful. I am waiting to hear from my doctor regarding so therapy that will help my body learn to relax as I tense from the neck down to the toes when I have to go to the bathroom..over a thirty year period, that means there is not a relaxed muscle in my body..The effect being tired and also the pain when I go to the bathroom is having a life altering effect on my body, mind and spirit...My life today is vastly different from what it was 10 years ago...
So if you'd like to post here when your've had your test and your therapy, I would very much be interested in how you made out.

[Just Mary]

Thanks everyone!