Urology Appt. Disappointment! - Interstitial Cystitis Network Support Forum

dawnja · 11-03-2009, 12:23 PM

Hey,
I had a uro appt. today and felt like nothing was accomplished. I asked about the natural meds I've been researching that I've found on this site (Cystoprotek, aloe, etc.). She had never heard of them (and I had a list of about 7). I told her that I generally feel crummy right now, like I'm run down, etc...She said there is a psychological component to this disease, the unknown of waking up and never knowing what kind of day you'll have that wears on you. I absolutely agree with that, and recognize it in myself, but I truly think right now that I have other physical ailments maybe due to sleep deprivation, and constant exposure to germs at work(I'm a teacher). She suggested an anti-depressant. Don't get me wrong...I'm not against that. It's just that in this case, I think my ill health issues should not be ignored within the cloak of depression. It is real that I have some bronchial thing coming on, phase 1 arthritis and a serious lack of energy that I don't think is caused by depression. When I am truly sick, I don't just want someone to say it is psychological. And besides, I had just finished telling her that I was having a difficult time and bad reactions with all the meds I've been given other than vesicare and elmiron, some of which were anti-depressants that turned me into a zombie even at the smallest dosage. I can't live like that.
Please don't think I am saying anti-depressants are bad..I don't think that. It should just not be the assumption that I am depressed when I bring up true health concerns. I was more depressed leaving there than I was coming in.
Has any doc told anybody that having an auto immune disease like IC makes us more susceptible to viruses and other illnesses? Just wondering, because my doctors seem to evade this question, maybe because they don't want me to see it as a self fulfilling prophecy, but I feel like that is the case for me.
I really hope I didn't offend anyone with the anti-depressant thing. That is not my intent.
Dawn

KarenAnne · 11-03-2009, 12:42 PM

I don't think you said anything wrong, and I've been on antidepressants in the past for depression. I totally get what you are saying. It sounds like the dr. just didn't understand you, & if she knew about IC, then she should have known about Cystoprotek & all. I'm sorry your appt. was so disappointing. Teachers have a tough, demanding job. And you have several other health issues to go along with the IC. I hope you can find a dr. who listens to you & gets you on a good treatment plan. Feel better soon.
(Question..I was not aware that our IC was definetly labeled an autoimmune disease. Did this dr. tell you this? Thanks.)

dawnja · 11-03-2009, 01:15 PM

Hi KarenAnne,
She actually said she wasn't sure if it was an auto-immune disease, but I've read in some places that it is, so I guess I don't know for sure myself. It definitely feels, though, like my body is attacking itself, and I'm sure others would agree.
Thanks for your kind thoughts!
Dawn

KarenAnne · 11-03-2009, 01:22 PM

Yes, I feel sometimes like my body is going haywire too. Whatever IC is, I wish there was a cure. Best wishes!

systitis · 11-04-2009, 02:03 AM

Hi Dawn...many of us have had several uros before we found effective help (I had 4, two were awful, two really helped.) Can you get another opinion?

An miserable aspect of IC is that when we're feeling beaten down & horrible, we so often have to fight to get an informed & compassionate doctor. Persistence is key...

I'm sorry you're going through this.

***ICNDonna*** · 11-04-2009, 02:40 AM

One thing you could do is to take a list of the supplements you're considering with you for the doctor to see. With the number of supplements on the market, it's not at all unusual for a doctor to not be familiar with all of them.

Donna

vm · 11-04-2009, 09:02 AM

I totally get what you are saying - you're not knocking antidepressants or even saying it might be a need for you at some point, but that you feel like the uro is ignoring some real, physical symptoms that are unrelated to depression. Sounds like she wasn't completely "hearing" you.

It is really a let down when we feel like we've been misunderstood or not fully heard.

I'm sorry.

dawnja · 11-04-2009, 01:27 PM

Thank you to all of you for understanding! I like your idea Donna. The only thing is then I have to purchase these supplements before I know if I will really use them. I think I will just do the research myself and make an informed decision.