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some questions and observations

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  • some questions and observations

    Hi everyone,
    Since this seems to be the area where we can talk about sex and IC, well, here goes! I've had IC for over 10 years, and been through lots of different treatments with varying success (and failure). Anyway, sex has always hurt and I'm trying to figure out a way to help that situation.

    One question: about pyrridium (sorry if I misspelled that!). I've used both kinds, the one that dyes your pee orange and the one that dyes it blue. I've ruined my share of underwear using that stuff. The orange seems to aggravate my bladder while the blue seems a bit better.

    Here's my gross personal question. Since so many of you recommend it to ease sexual flares, have you been embarrassed by the ucky stains this stuff causes? On panties, sheets, people? LOL Even after I wipe, I feel like everything is orange or blue down there. I suffer from a bit of after leakage or something after I pee, and this stuff makes me feel gross. Yes, it helps the urethral pain, but the dye is so disgusting, I'm afraid a partner would be utterly turned off by seeing orange or blue leaking out of me somewhat. UGH. So, I'd like to hear more about your personal experiences with this medication. (why the heck do bladder analgesics like this have to be dyed? For pete's sake, don't we have enough problems? Like your input on this)

    The other rather gross question I have is about odor. Okay, when I'm peeing every 10 minutes, even wiping well, I feel like everything smells of pee. How do you all handle this? Baby wipes or what? It makes me sick the whole thing. I don't feel confident about being with someone and smelling like pee down there from so much urinating. especially during oral sex. I am sooooooo embarrassed by the thought of doing that because I feel that it smells of pee. I don't think even doctors understand that if you pee constantly, things start to smell. I mean, I can't take a shower every 10 minutes. Am I supposed to wash in a bidet or something? This isn't always practical. And if I hurt or feel really tired out, it's all I can do to just wipe and go back to bed (I bet we all know how that feels). I know it's gross to talk about this, but I'm just trying to find an answer to feeling okay in a sexual way with another person while having this problem.
    So, any feedback about the pryddium and sex and the pee smell down there and oral sex. Gosh, I wouldn't ever think I'd write stuff like this, but I think the only way we can get thru this is to communicate even if it's personal and difficult. This is a great help and a great community.
    Thanks!

  • #2
    I used to take AZO which is the over the counter pyrdium. I was really worried about the orange thing too. I'm married though and basically my hubby is happy to have sex no matter if it turns him orange, if I'm orange, he doesn't care. I did discover that in my personal experience if I took it right before sex then it would help with the pain afterwards but I wouldn't be orange yet. If I had been taking it all day I never had him turn orange or anything. Now I'm on Urelle which is blue and I don't think it stains things as much.

    As for the smell. I noticed this when I was first diagnoised. I mentioned it to the NP who did my PST. She said this wasn't due to IC, it was probably due to the fact that a few drops were leaking out. She told me to do Kegel exercises to help w/ it. Now I have heard from other people here that is bad because a lot of us have PFD and doing Kegel's could mess that up more I think? I don't really have that problem anymore, not sure if the Kegel's helped or what but it just kinda went away. Hope this helps some
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

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    • #3
      For the pee smell - some people use a wash bottle to rinse off after going to the restroom and then pat dry.

      As for the orange stain, my sweetie hasn't minded it. It really has just become a fact of life. We always put down old towels to protect the sheets. Like Christine said though - taken right before sex it doesn't show up yet. Also remember, anyone who loves you will not be bothered by a little color!!

      There is another board www.whensexhurts.com that Jill set up. It is a great resource for ways around the sex isses. Nothing is too sensitive to discuss over there.

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      • #4
        I don't use the pyridium, but I know how you feel about the smell. I have a bit of leakage after I pee, just a drop or too comes out after, but I don't have incontinence at any other time, not when I sneeze or laugh or anything. Not sure what causes that. What I do is have a quick wash and change my underwear when I get home from work. Just throw a bit of water, and some aveeno soap on my vulva (use my hand, no wash cloth to irritate) and then pat dry. That way I don't feel so smelly for when I get into bed. I'm more self conscious about oral sex now too. But I usually have to take a pee break after a bit of foreplay, so sometimes I do another quick wash then. The smell doesn't seem to bother my partner, so I try not to feel so self conscious about it. All of this seems like a much bigger deal if you are dating, rather than with a long term partner. I used to carry an extra pair of undies in my purse. If we'd be coming back to my place, I'd stash an extra pair in the bathroom, so I could wash and change without him knowing.
        It takes a bit of extra work, and a bit of self-talk to get comfortable, but you can work around this!

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        • #5
          Thanks for the replies. I may try the water bottle thing (maybe a spray rather than trying to pour water overmyself over the toilet, which could get messy). About the dye in the AZO, etc. I still don't understand why it needs to be colored like that. Unless the medicine itself is that color, if they have put a dye in it just to show up in the urine for other reasons, the manufacturers of these products needs to understand what it does to bladder patients and our self-esteem, not to mention our clothing! They ought to pay for every ruined piece of underwear And yes, you can wear panti liners (done that too), but that can encourage moisture and more infection possibilities. Again, anybody know why this stuff has a dye in it? I agree, I like the blue better. I also find it less irritating. I'll try Urelle. I've also taken Urised and Uristat. I'm wondering if the color is harmful to kidneys, etc? It goes all through the system, bowel, everywhere.

          As far as a partner not being bothered by being turned orange, that might work if you've been in a long term relationship, marriage and they are okay with it. But getting into a new situation with someone and being told, by the way, you'll be orange....NOT GREAT. I'm not sure that even someone who cares and loves is not truly going to be bothered by that. It's great that you have partners that don't mind this type of thing. Anyway, I'll remember about taking JUST BEFORE, because I do know it won't come out in the urine for awhile. Of course, once it starts to come through, if you switch to oral in there somewhere, somebody will have an orange tongue! UGH! I can't imagine anyone who wouldn't mind that. Even if you explain beforehand about the IC, a partner is not ready for some of these things that they've never seen or heard of before. These are tough, tough issues. I just wish the drug companies would take this into account and start making angelgesic that is UNCOLORED. Can that be so hard? We can fly to the moon and all that but...............

          About the leakage, it well may be that the urine residue is from leakage. I don't think I noticed this quite so much years ago, and now it's worse, so it's probably a weakening of all the muscles down there. Maybe hormone therapy would help, although that's a whole other can of worms, right? lol
          I've never tried kegels, maybe I should. If I thought it would be of help, I'd do anything.

          thanks again, any more feedback on this issue is greatly appreciated!

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          • #6
            I've tried AZO but it doesn't really seem to work for me. And yes the orange is annoying. I have been reading on here a little bit about MSM gel for urethra pain. Maybe you can try that? I think I am going to buy some. It's at www.JacobsLab.com. We'll see if it helps at all...

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