First Urology Visit - Advice

[wwboy]

Wwboy,
I know what it is like to be written off as just anxious. I was seen by the VA for years. I complained about numerous conditions that were seemingly unrelated. I got diagnosed with an anxiety disorder. But I kept at it. Eventually, I got really sick and was struggling to breathe. The VA told me “we can’t see you. Go somewhere else!”. Not once...not twice, but three times. I kept trying to get in with my VA doctor. I was told no. Due to lack of treatment, my illness progressed. I ended up in the ER getting medication and breathing treatments. I found a new doctor outside the VA. I described my myriad of symptoms. This doctor listened and didn’t write me off. She agreed something was amiss. I was sent to neurology where it all came together. After a huge battery of tests. I was diagnosed with a potentially life threatening neuropathy. It turned out to be incurable. But it was missed by doctors who wouldn’t listen. All my new doctors can do is treat the symptoms in hopes of making my life better. I do go to therapy to talk about health issues. It helps me process things. I’ve learned good skills that help me relax. I’ve made peace with my condition. It is progressive. But I do the best I can. So I guess what I’m trying to say is don’t give up. Be your own advocate. It may not be all in your head. Sometimes, you have to be adamant and look out for your own self interest and push back. I try to be diplomatic, but I will look out for me. After I got all my tests done and received a formal diagnosis, I went back to that VA doctor and gave him the whole 100 page file. Hopefully, after seeing he was wrong, he doesn’t repeat past transgressions. Take care of yourself.

Oh man, I'm so sorry you went through that! How awful. I truly hope as well to not go through something like that! It must've be horribly frustrating to not be taken seriously...

I think I have a healthy skepticism or mistrust of doctors and other medical people -- not in a dysfunctional way, just recognizing that they are humans like the rest of us. I have quite a few medical professionals in the family, and while they are obviously smart and professional, they also are prone to all the emotions and foibles that everyone else is. They make mistakes, have incorrect hunches, and make wrong judgments. So whenever I go (obviously, given the context of this post - and all the preparation I'm putting into it), I try to advocate for myself the best as possible. When a treatment is suggested, I try to research it thoroughly if I've not had it before. If a doctor doesn't suggest something I thought was a good idea, I do at the very least bring it up.

But even as in your case, its possible to do all that prep work and still have a bad outcome. Once again, thanks for sharing and so sorry to hear about your hard time. Thanks for helping spread wisdom and confidence to maybe, hopefully, help minimize other such problems in the future.

[RetiredRN]

wwboy

Here are some questions you might ask

1. Are there any medications that might help AND what are the side effects AND if the medicine bothers me can I just stop it or do I need to ween off?
2. Are there any procedures that might help AND what are the risks AND what is the percent of success.
3. Is there any thing I can do at home that might help (diet, exercise, etc.)
4. Ask him/her to explain ANYTHING you do not understand.

Please listen to what he/she tells you. Then you can make an informed decision as to what you want to do.

[wwboy]

Hi all, thanks again for your advice.

I had my consult yesterday and I feel good about how it went. I took all my documentation which the doctor didn't look through in great detail. But as he interviewed me about what was going on, I referred to them and he then looked at them. We had a good long visit as a part of the examination, etc. By the time we got to the very end, I told him that I had been afraid of being dismissed, but that I did not feel that had happened. He seemed happy with that feedback.

Interestingly enough, one discovery that was made during the appointment is that even though I had peed 4x within the hour, I still had rather significant residual urine in my bladder after they did a scan on me in the office...nearly 400ccs, which I guess is a regular full capacity bladder type volume...that most people would be feeling the urge to pee. I felt pretty normal at that level. Like, "sure I could pee I guess" but no biggie... So that at least seemed to verify that there is something amiss that isn't just in my head. He wants to do a cystoscopy and urodynamics on me. No treatment yet because of the uncertainty on diagnosis. Those procedures are on the calendar (wish me luck). It was a little disquieting to hear some of the bad stuff that could be causing these symptoms. Part of me hopes its in my head or I'm just drinking too much or not having good bathroom habits re: emptying - which was also named as a possibility. Very strange indeed.

[specialdad]

Glad the appointment for you went well the scoping is a pain and the urodynamics is just embarrassing if you want to talk I am a WA native located north of Seattle area by 20 miles or so