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  • #16
    Hi Kate,

    I was convinced I had a paraurethral infection because my urethra bothers me so much. I had a urethrogram done in April because my doctor at that time was concerned it was a diverticulum. The result was no diverticulum but enlarged paraurethral glands. In July, I began seeing a new doctor who is considered one of the best IC doctors in the country. He told me there is no such thing as a paraurethral infection. He also palpitated both my bladder and urethra and told me the pain I felt was coming from the bladder. The urethra palpitation did not invoke pain, and he was really pressing hard on it.

    I hope this helps. I just know how frustrated I was with my diagnosis of IC.

    Comment


    • #17
      Hi Vanilla,
      Just curious, what type of treatment is your IC specialist recommending? Has anything helped?
      MelindaP

      Comment


      • #18
        Hi Ladies,

        Just jumping in here because I have the same exact symptoms as all/most of you: no bladder pain, per se, no frequency, no urgency. I used to have what I referred to as a urethra spasm post-urination (not anymore) and now I deal with urethra burning during sex--my only real symptom, now. The urethral spasming went away when I started to take Atarax/hydroxyzine (25mg/night), which is an antihistamine, and birth control (Loestrin Fe) with no breaks at the same time (my flares would be before my period). I am not sure which one is really helping, but I suspect both are, together--periods just totally mess me up, and with the Atarax, I tried to go off it for a time and I was miserable again.

        However, the interesting thing is that when I started on the Loestrin (and Atarax), within a few weeks I started having urethral burning during sex, which I still deal with, though manage to some extent (more on that in a second). I am now thinking more and more that it must be the de-estrogenizing (making up words) effects of the birth control, and I don't know WHY it's taken me this long to realize. ESPECIALLY because the only thing that helps me with the urethral burning is Estrace cream. I have to use it twice/day consistently or the burning will creep back up. I can get the urethral burning down to a 1 or 2 if I use it consistently.

        kate5all, this leads me to suggest trying Estrace directly on the urethra (you have to get an Rx). I have read that when you go off birth control, it can take up to a year or more to get your natural hormones back on track--and maybe longer to build back the tissues. Since I can't be off birth control (with the period pain), I am definitely going to try a higher-dose pill in the meantime. Also, lubrication (slippery stuff--don't use any of that KY junk) has helped, but it's not enough for me. Plus, who wants to just mask the problem? I want to solve it.

        Finally, I do think the muscular component could have a large role in all of this: if the muscles are contracted, it's not only painful, but it stops nutrients, etc., from getting to the nerves, so I am sure that doesn't help. I go to PT twice/week but it doesn't seem to have a lasting effect--helps for maybe a day. As such, in about a month, I am getting botox injected into my pelvic muscles. It'll be interesting to see what role that has with the urethral burning: my PT thinks that that is a lot of it, as when your muscles are contracted down there, the urethra sort of gets pulled up and out and much more exposed to rubbing, etc., if that makes sense.

        Let's all keep in touch.

        Comment


        • #19
          My doctor wants me to try botox and if that's not successful then the interstim because I do feel like I have to go all the time.

          Comment


          • #20
            PFDorIC,
            That is really interesting! We have almost the same symptoms, but I still have a consistant low level burn all the time. It is much less noticable if I don't drink/eat irratants (but it is hard to be good all the time). Today at a park I drank lots of diet cola & had DD coffee this morning! I am also on the same drug/BCP regimine. I remember a uro WAYYYYYYY back when this first started recommended the estrace cream, but I was 36 & pregnant at the time so I did not use it.I wonder if it could be the lose estogen??? I really like Loestrin though as I feel I don't gain weight on it. I am really afraid to switch! I mentioned in an earlier post that Dr. Moldwin gave me an amitrypyln cream to try vaginally, but I have not tried it yet. I am already taking Nortryptlyn orally & I hate to add more meds to the mix! I really feel my irritation, although it feels like it is my urethra, is at the base of my bladder, where it meets the urethra. That is a tough spot!
            I hope we all find lasting relief one day!
            MelindaP

            Comment


            • #21
              Ugh, so sorry you have low-level burning all the time. Does it read as burning even when the urethra isn't being touched at all (by underwear, sitting)? I sometimes have what I can only describe as a constant itching (like I want to reach in and itch the inside of my urethra--gross but true), but that's only about 3-4 times/year.

              I do follow the IC diet very carefully--I think Coke or anything like that would set off a long road back to feeling 100%, though it sure is hard, as you say--I miss tomatoes the most, I think.

              The amitriptyline cream sounds really promising and exciting--I agree that it probably might not even be the urethra, per se, but instead the bladder base that is giving us issues. Please do let me/us know when you try it--would love to know about a new solution/idea!

              I do really recommend the Estrace if you want to stick with Loestrin. Some doctors are less on board with it--urologists, I think, especially, since it's not as much their area (though Moldwin is amazing and probably would be open to it--used to live in NYC, saw him once, love)!

              Best of luck and keep us posted!
              K

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              • #22
                Yeah, I know I sahould follow the diet more closely. I did for the first two years, but then you get so tired being restricted, you know? I do keep away for the most part from citrus fruits. Coffee is the onr thing I can't give up. I have done it a couple of times, but always go back to it. I do try to drink the cold pressed coffee I make myself, which is 60% less acidic. I know that itch that you are talking about, and yes, I get that from time to time. It is the worst! I think it is an activated nerve by a something. It's awful! But the pain I get from my urethra is definately at the top, as opposed to the opening at the bottom. A uro once gave me an numbing ointment (lidocaine) rub on, but it didn't do a thing.
                I will let you know if I try the cream. Right now the irritation is tolerable. It's at a point where I don't even realize it unless I eat/drink things I should not & it increases. Do you take Elmiron too? I take 300mg (1 pill in am, 2 pills at night) which I think also helps!
                MelindaP

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                • #23
                  I agree; it's so hard to follow the diet. I find the acid pills--for those things that bother me worse, anyway--don't do much. Interesting about the coffee (making your own). I am not a coffee drinker, but would about kill for some Earl Grey--but it just destroys me.

                  Anyway, to answer your question, no I'm not on Elmiron but your message made me want to bring it up with my physician again.

                  Comment


                  • #24
                    Yes, I definately think the Elmiron helps. I tried to go off it a few years back and within a few months I had a HORRIBLE flare! Where as before it was just my urethra, when I flared that time my bladder got into the action! I actually did some installations. I immediately went back on the Elmiron, 400mg. I then tried over time to wean down to one pill a night, 100mg. Well, again, in the spring, I flared horribly again! Had to do more installations & here I am back on 300mg, where I have stayed since last year. It probably provides some protection for my lower bladder/urethra area. But I learned my lesson to never go off it or reduce it down past 300mg again! I hate to be on constant meds, but it is the only way I can manage this condition. I agree about the Prelief too. I don't know how much it really helps, but I take it anyways! Have you tried cammomile tea? I find I can tolerate that. I just dip the bag in a few times, never let it steep!And put milk in it! That is my winter drink!
                    Melinda

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                    • #25
                      Thanks for the info on Elmiron and dosages--that, after the botox (and some time to see if/how much it helps), is going to be my next step.

                      Yes, I do all sorts of herbal teas--and they are good, but there just not the same as black teas! Miss caffeine!

                      Comment


                      • #26
                        Urethral pain: check.

                        Today, I have diagnosed myself with CPM: chronic pee mystery.

                        This after my urologist said I may have Fowler's syndrome (http://www.ucl.ac.uk/ion/nationalhos...fowlersyndrome) or vestibulitis. Neither of those makes sense to me, but hey.

                        My urethra hurts, mostly during peeing. It comes and goes in flares. Unlike most of you, I do have higher frequency/urgency when flaring. Sometimes, it's worse after sex, but it's there when I don't have sex too. Food doesn't seem to make a difference, although alcohol kills me. All I drink is water and chamomile tea these days.

                        Today, I had a urodynamics. Afterwards, the urologist wanted to take a look with large, metal tube and it was torture. He said it was mostly the urethral sphincter that was hurting so much. Yuck.

                        Kate, I hope you're still getting married! Don't let this get to your relationship. Even though it's hard, I'm sure you and your fiance will sort it out. I'm engaged to and will get married next summer. Knowing my man is there for me makes all the difference.
                        Not diagnosed yet

                        More than a decade of 'bladder issues'
                        Main symptoms: burning pain in urethra, urgency, frequency
                        Triggers: Alcohol, carbonated drinks, tight jeans, synthetic underwear, stress, dehydration
                        Tests: zillion negative cultures, a cysto-hydro with biopsy, two urodynamics, several cysto's and ultrasounds, a sphincter electromyogram
                        Starting physical therapy soon

                        Getting married 7/7/2012

                        Comment


                        • #27
                          Eline, when you say your doc said it was the sphincter--and when you say it hurts when you pee--I automatically think about the muscles in the area. I know that when I am really bad with my pelvic floor dysfunction, it hurts when I pee. Have you been evaluated, pelvic floor-wise? I'd consider doing so if not--and trying PT. Without it, I am a mess, though it's not helped me 100% (why I am next trying pelvic floor botox).

                          Other things to try include Valium to relax those muscles (Dr. Moldwin--the best person in the country for these issues, IMO) or baclofen if that gives you trouble as it did me. I've also heard people with issues like yours trying Flomax, which is meant for men, but some women have had success.

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                          • #28
                            Thank you for the helpful reply!

                            Several years ago, a urologist dismissed PFD, because my muscles seemed strong enough. I though PFD had to do with muscles being too weak. But after your reply, I quickly checked up and it seems that muscles being too tight can also be part of PFD. That would make sense.

                            How is PFD diagnosed? It all seems rather vague. The talk from this afternoon seems kind of blurry, as I was in so much pain, but I do remember the urologist saying something about pelvic floor muscles, and there probably being a problem, so I assume evaluating for PFD will be part of the process.
                            Not diagnosed yet

                            More than a decade of 'bladder issues'
                            Main symptoms: burning pain in urethra, urgency, frequency
                            Triggers: Alcohol, carbonated drinks, tight jeans, synthetic underwear, stress, dehydration
                            Tests: zillion negative cultures, a cysto-hydro with biopsy, two urodynamics, several cysto's and ultrasounds, a sphincter electromyogram
                            Starting physical therapy soon

                            Getting married 7/7/2012

                            Comment


                            • #29
                              Hi Eline,

                              Actually, PFD can be diagnosed very accurately and specifically, but has to be done by a Physical Therapist, in my experience. They hook up electrodes to you (totally painless, don't worry) and measure muscle activity--asking you to clench and relax. Someone with PFD will think they're relaxing, but aren't at all. For example, I was a "10" when I clenched and a "9" when I relaxed when I first started--normal people are a 0 or a 1. Now, after going to PT, I can get down to 3 or 4 or even 2 on a good day.

                              A good gyn will also be able to sense, generally, that you have PFD just from feeling the muscles--feeling if they are tense, have knots, etc.--but it won't be scientifically measured per se.

                              Comment


                              • #30
                                Hm... This afternoon, the urologist said that he was going to get a physical therapist to take a look at it, but when he came back he said that he had consulted (a PT? other colleagues?) and came up with said diagnosis. Either the PT was unavailable or he didn't dare to put me through any more torture

                                But now that you're telling me this, I wish there had been a PT who had taken a look.

                                I'm a bit reluctant to switch doctors right now. I guess after all these years I can sweat it out one more month. I'll take the Fowler's test and then bring up PFD during the next consult, especially since there are specialised PT available in the clinic.

                                I hope they will be able to get a diagnosis though. This afternoon, the doctor asked me to clench my muscles, with the cath inside, and I just couldn't remember how to clench or relax, weird as that may sound :s

                                Anyway, your input has been pretty helpful, thanks again
                                Not diagnosed yet

                                More than a decade of 'bladder issues'
                                Main symptoms: burning pain in urethra, urgency, frequency
                                Triggers: Alcohol, carbonated drinks, tight jeans, synthetic underwear, stress, dehydration
                                Tests: zillion negative cultures, a cysto-hydro with biopsy, two urodynamics, several cysto's and ultrasounds, a sphincter electromyogram
                                Starting physical therapy soon

                                Getting married 7/7/2012

                                Comment

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