Officially Diagnosed!

[rgreen]

Well I have been lurking around the forums for a while now, months because my urologist has been leaning towards a possible IC diagnosis. Well, I've been going through the horribleness of frequency, urgency incontinence at times...it's been bothering me for about 2 years, I saw urologist after urologist in Connecticut where I lived and when this first started. None of them believed me. They said it was an infection, and that was that. I moved to Boston in August because of my husband's medical conditions, and I actually started seeing one of his urologist's who is one of the top in the country...he's been doing full work up on me. At first he was unsure what was going on, he'd done everything. Test after test, cystoscopy showed my bladder was normal, CT scans etc...were done they couldn't find anything, the urine cultures almost always came back negative. He tried me on Amitryptiline and it hasn't helped, (it may have been the reason I went into retention) I've also tried hydroxyzine, pyridium with no help. A couple of weeks ago, I went into frank urinary retention, all of a sudden. Odd considering I'd been having the exact opposite symptom's previously. I've been dealing with the catheter in place since May 29th. I've had 5 voiding trials in that time frame which I have failed all. On June 10th, I underwent urodynamics and it showed my bladder is not compliant to which it should be, especially for someone my age, (I am 20 years old). I was admitted to the hospital on the 11th for extreme pain, retention and IC. I had MRI work up done at that time, the MRI's (there were 5) actually took 5 1/2 hours. They were trying to rule out anything neurological. They came back normal (which is great, but again, frustrating and leads me to still no answers). I have finally been discharged from the hospital, with the catheter draining to gravity. I see my urologist on Monday for a hospital follow up and to discuss surgical treatment. He had been adamant about surgery at first only because of my age, but given the hospitalization and worsening symptom's it is something he is now looking at. He had briefly mentioned the InterStim when he rounded on me in the hospital. He is on vacation this week, but like I said I am seeing him on Monday. For now they've released me from the hospital and have me on all of the heavy, heavy pain medications. I'm supposed to be on bed rest and out of work until I see him, possibly longer. So now I have got to go through the disability nonsense with my school and my work, which I never in a million years thought I would have to do. But while I was in patient he finally came up with the diagnosis of IC and firmly believes I have it, although he thinks I may have some other urological issues going on, he has confirmed the IC.

It has all become very frustrating and aggravating. I don't know who to be frustrated with. The doctor sometimes, because I feel as though he isn't helping me, when I know he is it, it's just that with something like this it takes time etc... I am frustrated with the diagnosis itself and just everything dealing with it. When I spoke to the resident yesterday, he told me IC is one of the worst diseases a patient could probably have considering there really is so little they can do to help/relieve the patient.

Well I really didn't mean to write a novel here, I just wanted to "welcome" myself to the officially diagnosed crew and I really want to send out a huge thanks to all of you guys, I have been lurking and observing this board for a couple of months now, and I already have felt great support and comfort in reading different posts. I think being able to talk and share with others who are going through the same thing is a wonderful thing and I am happy I have found this forum.

Renee

[Lexie]

Hi Renee -- I'm sorry that you are going through a rough time. Don't let that resident doctor scare you -- there are MANY treatments available for IC and most IC patients find treatments that really help them. I'm one of those people. I was diagnosed last year and was in bad shape at the time. Now, I feel normal most of the time!!

[KarenAnne]

Renee, You have been through a terrible time & I pray it gets better for you. Thank God that you finally have a diagnosis. The only thing left to say is :welcome:.

[maryla]

Renna,

Welcome. Check out Gaba-IC protocol. It has done more for me than any thing else I had tried in the last 5 yrs. I don't know if I can give you the site here, but.....www.cairx.com :pray:

hugs and blessings

[statesboro]

I did notice you have been welcomed by now. I also noticed that post is not your first one, but it must be the first one since being properly diagnosed. Ok. It seems like you have been through enough by now. There is still no cure; therefore, we have to continue to go through ringer sometimes. Yep! We don't enjoy having IC, or any other chronic illness, but it is still good to be properly diagnosed. Of course, we can understand the frustration and dissapiontment. (and sometimes confussion) What a bummer! At least, you have found a good group of people that understand and have much respect for each other. Besides, we are all dealing with this same horrible medical condition/disease/chronic illness. (even though we are not all the same) OK. I did notice your husband has got medical conditions as well. I have never been to Massachusetts, but I do know a high school dude in Quincy that has got IC as well. He was diagnosed at kindergarten age. How about that?(and not by first doctor visited) (and other conditions as well) Ok, then. I feel like I have written chapters on here before, too. Take care and be good.

[rgreen]

Thank you everyone for your kind words and support. I kind of knew I probably had IC but now I've "gotten the official" diagnosis and I feel weird. I just feel different, even though I knew it was most likely coming.

I am going to do major research into the InterStim (not that I haven't previously, but more so now than before) but I also want to sit down and figure everything out (easier said than done, I know) with my urologist on Monday when I see him. I always get my hopes up that he'll have a new answer every time I go see him and I think that's one of my problems of frustration. Just wanting to know what is going on makes it harder when "it'll be one more test, or I need to do this to rule this out" are the only words your hear for a while. So...I am slowly but surely starting to make great progress.

Maryla- I did save that link and I am definitely going to have to check it out in the morning and most definitely before I see the uro on Monday! Thanks a million for your help everyone!

It's getting late on my side of the woods, so I better hit the sack, but I look forward to talking and meeting more of you soon!!