Just got back from my new Urologist.....

[nnj925]

Ok..so he was very nice and I really liked him.

I explained to him that I am very scared and sensitive about getting anything put in "there"...catheter, Cystoscope..and most of all Hydrodistention>spelling...he said that he wasn't going to do any of those now.

He does think this "flare" (which started 6 days after I had laproscopy Tubal ligation, which they cathetered me) is most probably being caused from that. However...and this has me crying and very upset....he said that there was a trace of blood in my urine.!!!!!! and btw..(i have no infection)....I told him my urine was very dark this morning when I woke up....very dark almost brown..I asked if that could mean there was more blood? He said its possible but my urine also showed I am a little dehydrated??!?? he asked how much I drink? I said yesterday I drank about 3 16oz bottles of water ..... (btw..by the time I peed at the dr. office which was about 11am my pee was very pale yellow not dark anymore, yet they saw a trace of blood) .... He said he wasn't really concerned that its something serious like Bladder Cancer etc...but I am very scared now..I have never had blood in my urine!!! not to my knowledge anyway.

He told me that he didnt really want to treat me with Elmiron and those types of med's ...he wanted to more of a antispasmatic med....b/c of the symptoms that I am having (frequency and urges and spazams.) He did an interal exam on me and said one of the muscles (i forget what it was called) does feel like it is spasaming...and wants me to go for Pelvic Floor PT. So I made an appt for monday for this.

He prescribed Toviaz? its a 14 day sample pack..anyone have experience with this? He said if I do not feel any relief by monday to call the office and we can try another type or type of muscle relaxer. He wants me back in 4 weeks to re-check the urine...he said if there is still blood at that time we will have to talk about putting a camera in there to have a look...I was crying .... he did say he can put me to sleep for the procedure tho.

I have been crying so bad. I am so scared.

thanks for listening all and any input

[nnj925]

one more thing...he said the toviaz can cause constipation anyone have any fixes for that???

[earthlady]

I use Miralax which is OTC and works very well and very gently for me. No cramps etc. There is a warning on this med though that if you have kidney disease it should not be used. Ask your dr. if it would be ok for you to use. I also increased my magnesium which helps an awful lot. Also - when I had my cysto and hydro I asked for versed sedation and did not remember a thing from the procedure until it was over. I was actually able to have this done in office with this medication and did not have to go to the hospital or surgi center.

[nnj925]

I am assuming you mean Miralax for the constipation? Well the pills he gave me for the urgency have the same kidney warning so I guess I would be fine. I do not under any circumstances (right now) want or feel I need a hyro..asleep or not....the Cystoscope (camera) I would do IF he felt necessary but I want to be completely out!!!!

[L. Thomas]

Tell him you want to be knocked out for the porocedure. It seems logical that if you are having muscle spasms bad enough for threapy that you would have them during the procedure.

[earthlady]

yes the Miralax is for constipation, and is the best thing I've found for problems from these types of bladder meds.

[nnj925]

Tell him you want to be knocked out for the porocedure. It seems logical that if you are having muscle spasms bad enough for threapy that you would have them during the procedure.

Yea I did tell him that..he said no problem...but hes not doing any of that right now... he will wait till I go back in 4 weeks and he re-tests my urine to see if there is still blood.

[cmclien]

I use magnesium and flaxseed oil capsules for medicine constipation. I personally can't handle the miralax, it totally bloats me up and makes me feel awful but thats just me.

NNJ sorry you are so stressed about these things. I felt exactly the same way you did about the inoffice cystoscopy but my fears were much worse then the procedure. I put it off for years but then I found a nice doctor and he explained in another office visit step by step what he would be doing and he wouldn't hurt me and it would only take 15 min or less. He was right and my fear was much worse then having the scope done. He had me watch it on a tv screen too which helped in distracting me. Maybe you could ask for something that would help relax you like valium or other?? if you need to have it done. BTW lots of ICers have blood in their urine, probably from the bleeding, cracks, sores on the bladder wall. Cancer is really rare.

Hang in there

[nnj925]

Cmcilen..thanks for the reply...but ya see...18 years ago I gave birth to my son..I had the epidoral...after I got the epidoral and i was numb...they put a catheter in me and I FELT IT!!!!! during the whole birth and everything I felt it the first thing I said after i gave birth was "please get that out of me!!!!"...I told the urologist this today...he knew right there that I was VERY SENSITIVE to this...I know what it feels like with the epidoral...worse than my labor pains and I was INDUCED!!! So ...yea.....I want to be asleep....

[cmclien]

Oh yeah, that was on another thread right? Well it sounds like he's flexible and willing to give you something heavy duty if you need to have that done. Hope the new med works for you.

[sailawaygrl]

I always have trace amounts of blood in my urine and so do a lot of other people. That scared me in the beginning as well.

It sounds like he is taking a very reserved approach to helping you and listening to your concerns. That is good. I hope the new meds help you.

Sandra

[Star B.]

I always have trace amounts of blood as well. I'm assuming it's the Hunners ulcers, but who knows.

[mittens]

The cystoscopy with hydrodisstention was a very tolerable procedure for me. Yes, I was given general anesthesia so it was ok, and I am deaf in both ears so I was a little apprehensive because I cannot hear. I was diagnosed with IC through this test. I had cramping and "crescendo-ing" pain for a long time after it, but the specialists tell me it's the IC and neuropathy, not from the procedure. Believe me you won't feel the procedure at all. I was then put on Elmiron right away, and I strictly follow the "IC DIET" which saves me!!!!! You have to be disciplined with this disease, and not be hard on yourself. I have learned that my anxiety disorder certainly does exacerbate my symptoms so I take my anti-anxiety meds and really try very hard to be a more calm person. I'm starting a research group for IC and Neuropathy so it'll be interesting to see what they will have me doing. Don't worry about the blood in your urine.....with IC'ers it's microscopic and it is only from the ulcers on the bladder wall. I routinely have microscopic blood in my urine. You have to remember that IC is a disease of patience....truly....as sometimes some of the meds and methods take a fair amount of time to work. Some don't work at all, so it's trial and errror. This disease is so individual that what has worked for others that I know with IC does not work for me. I have depression now and it's quite bad, as I feel an "identity crisis" because I'm certainly not the same person I was prior to my being diagnosed with IC and neuropathy, but again, I am not hard on myself and really try to keep myself from being overwhelmed. I find that rolling with what each day brings helps overall. Don't worry or be scared, but do try to find a urogynecologist who is very knowledgeable on IC and willing to refer you out to specialists if need be. I love all the docs that aid me with my disease.