Urology Appt. Disappointment!

[suncaro23]

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]

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.)

[suncaro23]

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]

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

[systitis]

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]

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]

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.

[suncaro23]

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.

[HeatherP]

Hi Dawn,
I hope you are feeling better. My first (well, only, so far) uro said I don't seem "crazy enough" to have IC! What a jerk!
Yes, I have been depressed at times, but it is an EFFECT of the illness, not the cause!

[ICNDonna]

Most of the supplements are listed on line so you can print out the contents to show to your physician. That way you can get an opinion without spending any money.

Donna

[Glenda2]

I was pretty disappointed with my 2 Urology appt's , when The Urologist Told me Elmiron was the ONLY thing to take for IC. ( Yes Darpaz too. )

Everyone here use's all sort's of other products for their IC.
Some have Good Results with them.
Other Do Not benefit at all.

Then there are Those that Start taking Harder Type Drugs for their IC.
I will Not mention names for these.
But I will Not take these Rx. medications.

I have to wonder at times , Which is Worse , The Pain from IC , or the possible Side Effects from these un-named Rx. Drugs ???

I hate side effects , but I hate the IC pain just as bad.

It's a No Win Situation. Your darned if you do , and darned if you don't.

The only time I have Ever been Sad (Depressed as the doctor called it )
was when my sister passed away unexpectantly in 83.
Then I was only that way for about 2 weeks and snapped right out of it and felt fine.

[nottoc4]

My UroGyn gave me the anti-depressant Imipramine,not for depression but for relief of pain and frequency. It works really well.

[suncaro23]

Hey Everyone,
Thanks for all your replies. I live in a very small town that is a long way from everywhere, so that definitely limits my choice of doctors. I have started cystopro and aloe and they have really helped. I also had 3 installations, and what I am learning is that I need to trust my own instincts and be my own advocate. I had 2 of the installations just a few days apart, even though I said I was uncomfortable with it because I felt I needed more time between to let my urethral burning die down. The nurse told me that the doctor felt I needed them that closely, so I went ahead and did it, and then ended up with an infection. I had a strong feeling that this is what would happen, so next time I will make sure it doesn't by asserting myself more.
Does it sometimes seem to some of you that we really have to almost write our own treatment plans and present them to the doctors? I mean, I am always open to what they say, but they don't know everything, which is why we need to do our own research and ask for what we think will help us individually.
Happy Holidays and really really Happy Friday to all!!
Dawn

[Jereme]

you need to find a doctor that you can trust and that will listen and take you seriously. I agree that we need to be our own advocate and try things. I will research treatments and ask my doctor about them. Every medicine that I take is something that I thought would work and asked my doctor about. Also there is a mind body connection with this illness. I'm not saying it is all in the mind, but the mind and body are definitely linked. If you think a treatment will work you are halfway to having it work. If you think it won't work or that you are going to get side effects you probably will. There are lots of people who drop out of placebo controlled studies citing horrible side effects even though they are taking the sugar pill. That's the mind for you. It's a very interesting thing. I think meditation or yoga can really help get in touch with the body and the mind as well as help cultivate self acceptance and compassion. With increased self acceptance and compassion comes the strength to handle any challenge since you learn to do that one moment at a time. good luck.