Post op pain

That might explain why the pain is so bad, but that doesn't explain why the doctors leave you to suffer. It might mean that they need to treat it more aggressively until you can build up some reserves of painless periods!

And yes, it was uplifting....to be in the same room with my neighbors, and teenagers and folks of every age, and watch the beginnings of a great glacier.

Sure wish I could have unhooked my phone for a few months, though.

Let us know what your doctors say.

Stephany in Iowa

Stephany,

I was recently told a simple but obvious fact that shed some light on my pain situation. The other day a doctor told me that chronic pain increases sensitivity to pain. I always assumed the opposite; that one ‘acclimated’ to pain and could compartmentalize it. Understandably this is not so; pain causes fatigue and inhibits healing, so you become more sensitive, not less. This gives me some peace of mind. Now I know why at times things hurt more than they should.

Being in Iowa for the historic caucuses must have been wonderful. Diversity and tolerance are the hallmarks of a great society.

Cysax, before the internet, I had a long bout of doctors telling me they could find NO reason for my symptoms. I had one doctor sit down and list all of the things she had ruled out by examination, and told me it MUST be in my head. I actually developed food aversions and panic attacks.

The proverbial "sixth doctor" was a gynecologist, who not only figured it out, but actually had pamphlets describing my problem. (endometriosis)

Another mystery disease I suffered from for years was finally diagnosed just after the internet started to be useful, in that I could take a possible diagnosis to newest doctor, and ask questions. (abdominal migraine/cyclic vomiting syndrome)

The third mystery disease, I diagnosed myself with pictures I found on the internet, and then a year later I found a support group with 1500 worldwide members who were also searching (erythema nodosa).

So, it is frustrating for me to see someone else who has been through this sort of thing, again, but believe me I know what you are talking about. No, I don't have bladder cancer, but my husband did. And when he had his first symptoms (blood in the urine) I tried to "talk it away", but he didn't....he went straight to an angel (Dr. Rippentropp-urologist extraordinaire) who made the diagnosis.

My thoughts are with you. Keep checking with your doctor, and maybe consider getting a therapist on YOUR side....someone to back you up in saying it's "not in your head".

Anyway, I'm going to bed....it's been a long hard day here in Iowa.

Stephany in Iowa

hmmmmm....5 never huh? 5 bad ones yes!....i just saw a program last evening on Mystery Diagnosis....i'm totally addicted to medical shows....there was a woman who at the young age of 34 started with symptoms of dementia and some other neurological problems.....l0 yrs later and some 15 different doctors one finally tested her serum Bl2 level....almost non existent. She still has some lingering permanent damage but much better now that she's being given the shots. As for bladder cancer...all you have to do is read the forum and storyboard...most stories identical to yours...UTI infection....all in your head infection.......not until gross hematura shows up does anyone pay any particular attention. Its the internists and family doctors that need the education....what do they do with those urine samples anyway??...do they even really bother with them...some don't even do it any longer.
By the way cysax...i also had my top stitches opened as they thought i had aquired a staph infection...looked like they had cut into a 3 inch steak!!...I had to pack it several times a day...it took about 6to8weeks to completely heal up but i never had any pain as most of my abdominal area was completely numb for a really long time. All feeling did eventually come back except for one small area on my thigh about the size of a 50cent piece that is still completely void of feeling.
You may also have IBS...maybe they could refer you to a gastoenterologist....they ought to do something. When you talk with Stein and group don't gloss over the pain...tell them exactly how it is...it sounds to me like its constant....maybe you should get your wife involved....good cop ..bad cop.....!! I played the bad cop when my husband had bypass surgery....they all loved my husband but went running whenever they saw me!!
One question you mentioned having BCG just prior to cystectomy...how prior? And if it was an invasive tumor why were you given BCG? Pat

As with us all, my history with this illness has been somewhat of a saga. I had major urinary pain for over five years before being diagnosed with BC. I went to at least 5 different urologists – at major institutions like UCLA and Cedars Simi – most told me I had prostatitis, a diagnosis which generally means they don’t know what’s wrong. None suggested having a cystoscopy , the most effective way to detect BC. At that time, I didn’t really know what a cystoscopy was, I thought I had an infection. When I was about to totally loose it, my MD gave me a lecture - saying that ‘since no medical condition could be found, I had to face the fact that my problems were related to stress and lifestyle. For the record I have an exceptionally healthy lifestyle – as for stress, it was huge due mostly to having to urinate every hour, 24/7 and intense pain when urinating. My sleep cycle was a joke, never more than an hour at a time. I was told – ‘One doctor may miss something, maybe two – but five, never.’ One week later, on Halloween no less – I had blood in my urine for the first time. The next day my doctor sent me to a urologist with specific instructions for a cystoscopy– low and behold I had a large aggressive tumor. I share all of this as because, even with the internet – more exposure and information is needed on BC. I did extensive research and tried endless cures before being diagnosed, it never occored to me that I might have BC because I am not a doctor and followed their advise.

My hope is that my current pain is related to the BCG I had prior to surgery and the healing of the two very large cuts that had to be made to drain the post op infections on my incision, and general healing pains. My new pains are different from my old pains – so I guess that’s progress.

My plan is to wait a few more weeks, let the new cuts heal further and see how I’m feeling at that point. If I still have major problems, I will get more insistent about investigating further.

I have gotten such varying responses to the question of pain related to the surgery, I’m just trying to calibrate. I guess it goes from limited to severe. Like Patricia, I cried when I went to the bathroom, and sometimes still do. Things are getting better, but much slower than what the doctors told me. Not their fault, just a fact.

I don’t want to scare anyone either, but knowledge is power and information is essential.

Thanks for your input – keep it coming.

I agree with Pat. Keep pushing to have them examine you. My husband and I work as a team with me being the nuerotic one pushing to have him seen. While the pain may be completely normal, what could it hurt to have the reassurance of an exam.
Sam