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I live in chronic pain. The reason for my pain, is Endometriosis. I was diagnosed through surgery when I was 17. I have decided to have this blog, so that those in my life can get a peek into my day to day issues that affect my life in every way.

Wednesday, October 7, 2009

cystoscopy countdown

I am trying to remain calm; I have done amazingly well until this morning at 4:45 when I woke up fully on my own half due to stressing I think and the other half from pain that is likely in part due to the stress (love life haha).

Today is the day I have in theory be “waiting for” for over a year and a half now. That is a fucking long time if you think about it, it’s sad that it’s taken till now for doctors to possibly figure out what is wrong/not wrong with my bladder and why I have such issues with it and pain along with said issues.

When I say “waiting for” I haven’t really been waiting for today, I have been waiting for a doctor to take me seriously, my issues are something that even shocked the urologist when I saw one for the first time a month ago. He wondered why I hadn’t been sent to him sooner and I explained that no one seemed to care. I tried to make the docs understand, and so did my mother to no effect. It actually took my being with my grandmother for a week (after warning her that she might not be able to make/keep plans) while I was there due to either my pain or my bladder, and then witnessing the issues all week long, and getting so frustrated that she ended up on the phone with my gynaecologist (my Endo specialist) who didn’t seem to care that there is often blood in my urine. After that he finally referred me to a specialist.

So today is the day I see the urologist doctors at Sunnybrook hospital in Toronto again, and have a procedure done. The reason I am stressing and nauseated at the moment is the thought of that procedure. I will be having a cystoscopy sometime this afternoon. For many people I am sure they have had one and it was no big deal, but since the reason I am having one is that my bladder/urethra =pain to me the thought of them shoving a camera/tube up it is not exactly happy. Then add that my understanding of this procedure means they will also fill my bladder (another painful thing for me) while looking around inside also not exactly joy inspiring.

All this will be done with only local freezing so I get to be completely alert! Joy. Though last week when I asked my pain doctor about how a cystoscopy happens he explained to me and I them mentioned my anxiety and asked if they will be giving me anything to relax me, he said no. Now I was more worried, but he sat and thought for a minute (I was hoping if I mentioned this issue to him he might come up with a solution perhaps prescribe me one pill of something to calm me down) well he concluded that what I should do was take Demerol before my appointment, even if I wasn’t needing it for pain. Though looking at the past couple of days I will likely already be on Demerol for pain, but I might take a second one for the purpose of calming me down so I don’t kick any doctors.

The other thing is besides the procedure there are many things that might be involved today that I am uncomfortable with. Believe it or not I do not enjoy being exposed not even to doctors (and far too many have seen my girly bits over the years). I hate hospital gowns. But I think aside from the actual procedure my biggest fear from what I have heard might be entailed is that the nurses might shave me before the procedure. Scott when I confessed this fear to him asked why I don’t do it myself, and I said well honestly even if I do it might not be well enough to make them happy. The more important issue is my skin is being really sensitive this week so if I shave unneeded it won’t be nice, but if they shave me it might be doubly not nice. Who knows?

The interesting thing about all this is that by the end of today I might know why I have such issues with my bladder and might be told how to treat the issues. That could be awesome. The other interesting this is that for the past 3days I had to keep a “urinary diary” and because of this I have gotten a very good idea as to how much is the max my bladder can hold. Or at least hold before it starts hurting due to pushing on other things inside me or stretching. The thing that worried me though is for my diary my bladder has been on decently good behaviour, making me of course look like a liar (though it often goes for days and days between times where it causes me frequency issues like ever 10minutes) but still, but then just now it started to pull its same old crap so today’s diary might show a slight window into how my bladder can also prevent me from leaving the house at times.

So as it stands if the apointment is on time it could be as little as 5hours untill the dreaded cystoscopy. ugh!


  1. Thinking of you Shelley. Hope it's not too crap an experience and you get some answers. I so get the exposure thing. I hate it. There is no dignity left now. I don't think I have a part left that some stranger hasn't seen, felt up or poked now.

    I still remember when I had Thomas. I was up in stirrups (yay) ready to get sown back up (indignity enough) they decided because my cut was the biggest they had done (woo hoo) that all the trainee midwives should come in and look at it. Didn't ask me just did it. So there I was just given birth exhausted with a gaggle of women looking at my very exposed lady bits making comments about them. Personal highlight that.

    Fingers crossed for you.
    Michelle :)

  2. Shell87,

    I don't know how you made out with your cystoscopy and I just stumbled on your blog for the first time today but I thought I'd share a bit about my experience in case it sheds any light on your situation.

    I have lived with endometriosis for 27 years. Back in the early 1990s, I was referred to a urologist because I was having very severe urinary urgency and frequency issues (every 10 minutes, no relief even after going).

    To make a long story short, the cause of those symptoms didn't get addressed for a long time because I had a separate issue diagnosed that was causing blood in my urine: kidney stones.

    We got so sidetracked with the kidney stones that the horrific urinary urgency & frequency were not addressed.

    Long story short, it took 12 years and 4 cystoscopies but I **FINALLY** got a proper diagnosis of interstitial cystitis. With treatment for my IC, I have had drastic improvement in my urinary frequency and urgency.

    The first 3 cystoscopies were (supposedly) negative. All were performed but urologists. The 4th cystoscopy was performed by my pelvic pain specialist (who deals with conditions like endo and IC every day). He is the one who finally diagnosed my IC.

    One of the four cystoscopies was done while I was awake. Two were done with general anesthesia (one when I was put under for a lithotripsy for the kidney stones, one when I was put under for a laparoscopy to remove endo). The remaining cystoscopy was done with a spinal.

    The one I had awake was unspeakably painful. Barbaric would be the right word. It was horrific.

    Obviously I have no clue what is causing your symptoms and only your doctor can tell you that.

    Here's the thing... it took me 12 years to get a proper diagnosis. So, if you didn't get helpful answers... I would encourage you to seek a 2nd opinion (or 3rd or more).

    You should not have to suffer that way. I am sorry for your pain.

    In my case, the blood in my urine was caused by the kidney stones. It had nothing at all to do with IC.

    Only your doctor can figure out why you have blood but obviously it's a sign of something.

    As far as the urgency and frequency, I have no idea whether they are tied with the blood in your case... or not.

    I know that in my case the urgency and frequency were caused by IC. For 12 years I advocated for myself, I pushed for answers, I questioned whether the negative cystoscopies could have been wrong... For 12 years, the urologists insisted I did NOT have IC.

    I do have IC. Thank goodness I finally found a doctor who had a clue about IC and diagnosed me properly. The treatment helps so much!

    Best wishes to you! I hope you have gotten some answers for your symptoms.

    Take care,


    P.S. Endometriosis and interstitial cystitis are commonly co-existing conditions. Many women have both, like me.

  3. Jeanne,OMG you just made my bad day better.
    I had not updated this blog mainly because of how barberic the cysto was. i was hopeing i would cool down and be able to report about it without scarring the crap out of others who might stumble upon the post before going in.

    Then there was the second reason i didnt update. I left in mad amounts of pain and with less hope then i went into the hospital that day. They couldnt find anything wrong "yay?" umm... no. He said it sounded like IC but he couldnt acturaly diagnose me as having IC since there was no actural sigh of it, and that if i did have IC there arn;t alot of treatments anyways. Though he did perscribe me something to help with the urgency (wont help the burning, the pain, the blood, the clots though of course even if it does work perfect). (filled the script this week, not yet trying it since lately i am getting WICKED back cramps and would like to get that posibly figured out before adding more to my body. That and the drug her perscribed is also used as an anti-depressent and well.... (not this type) but anti-depressents have almost pushed me over the edge in the past so even at a low dose i worry.

    Will likely update the blog now that well its been ages and i have hope once again that there is a doctor out there who might be able to help.

  4. *hugs* I hope you got some answers and the procedure went ok!

    I'm sorry to hear that you and your guy are having some of the same concerns that Andy and I are having. Best wishes *hugs* As if relationships weren't complicated enough, right?

  5. Have been meaning to pop over again sooner. I have been seriously sidetracked by the fact that an impostor posed as me on Twitter for 27 days (until just a couple of days ago when Twitter FINALLY shut down the identity theft account). So, I haven't forgotten about you or your situation. If you get a chance, check out some of my blog posts about IC. It's going to take me at least a few more days to "clean up the mess" related to the Twitter impostor. In the meantime, though, there are many IC articles on my blog.

    Take care,