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View Full Version : newly diagnosed and anxious


KWinTO
07-21-2009, 01:05 PM
Hi everybody,

I've been reading your posts for about 8 months now, but I didn't have a diagnosis until this past Monday, when I had my cysto/hydro. My problems started pretty normally with what I thought was a urinary tract infection. In retrospect, however, I had been experiencing abnormal frequency when having drinks with my friends this past fall. I always had what I thought was a large bladder capacity, so this struck me as a bit strange.

I was pretty upset from the beginning. I knew about IC because I had a similar episode of urinary urgency about three years ago that was diagnosed as trigonitis and went away after a month or so of Prosed. The research I did at the time terrified me and my symptoms this spring brought my concerns about IC rushing back.

After the onset of symptoms in November, I suffered extreme anxiety and panic attacks, which caused me to take some time off from school (I'm getting my PhD and I think the anxiety I experienced in the fall pushed me over the edge-finally my body decided it could no longer cope with the stress I was forcing it to deal with). The "infection" went away but the sensation of urgency remained. The first urologist I saw did a cystoscopy and said that everything looked normal, that I didn't have IC, and that my problems would go away if I stopped thinking about them. Typical. I had a potassium sensitivity test several months later that came back negative, and my current urologist was convinced that I didn't have IC (because I don't have pelvic pain--knock on wood--and don't really have frequency. I use the washroom maybe 5 times a day and wasn't getting up at night to urinate-- until I had the cysto/hydro :(. My urogyn. wanted to do the cysto/hydro to RULE OUT IC! I was obviously surprised when I woke up post-procedure and he told me that I had IC, gave me a prescription for Elmiron and told me he'd see me in three months. I'm so angry about this. I have no information about the severity of my IC and he gave me no info about diet, etc. Totally irresponsible in my opinion. Anyway, here I am. I had had several good weeks prior to the cysto/hydro (I even thought that I was better), but the procedure seems to have irritated things and now the urgency has returned, exacerbated by stress, I'm sure. I just wanted to ask the few questions that I assume every newly diagnosed person wants to know: Is there hope? Is there a chance that I won't have to live with this constant urgency for the rest of my life? Should I expect my symptoms to remain stable or to deteriorate? I'm trying to think positively and I would appreciate any input you may have. Also, I'm attending the Wise-Anderson protocol in August and will definitely let you know how it goes. I think part of my problem is PFD-it seems that my pelvic floor doesn't relax easily after I contract the muscles. I wish you all the best and thank you for your support.

Best wishes

Sarojini
07-21-2009, 02:20 PM
I'm sorry to hear you were diagnosed with IC... it's always a tough thing to hear, but there is DEFINITELY hope. Most patients find treatments that help them live nearly normal lives - for every one person posting here because they are flaring, there are many others out there who ARE NOT on the boards because they're off living life and feeling great (in fact, I'm usually one of those people - I feel great most of the time these days). :)

First of all, it's normal to feel worse for a few days after a cysto/hydro - the stretching irritates the bladder wall, and until the inflammation calms down in a few days, you might note some increased frequency, urgency, and/or pain. It should clear up in a few days - if it doesn't, I'd speak to your doctor to make sure you don't have an infection. Any time a scope or catheter is placed in the urethra, bacteria can hitch a ride along with it.

Also, in most cases, IC is NOT progressive, so you probably won't get any worse than you are now, and you will most likely improve :)

KWinTO
07-22-2009, 07:06 AM
Jen, I was so grateful to receive your reply, I actually cried. It's so great to know that there are people out there who have been through a lot and are doing well. Thank you for being so kind and giving me hope. It's important to stay positive, right? I'm so glad your feeling well and I wish you the very best for the future!:smile tee