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  • Frustrations With Urologist

    I had an appointment with my urologist today & I'm really frustrated. I'm not even sure if I want to go back He barely gave me 5 minutes of his time, I felt so rushed in there. They weren't able to do a flow rate test because the room had wasps & my notes were still at another hospital so he was relying on memory for most of the appointment.

    He has assumed that my problem is frequency, urgency & INCONTINENCE.. Which it's not. At no point have I been incontinent & I've made this clear to every single Doctor I have seen! But they ALL keep forgetting it.. Or ignoring it.

    My Uro has referred me to a Nurse who is going to do bladder training with me.. But I keep saying to these people that my problem isn't that I can't hold my urine, it's that after 30 minutes of voiding, the feeling is back. I can usually hold it but after about an hour/hour and a half I start feeling unwell. It makes my stomach hurt, I feel sick & so on.

    He's also prescribed me Tropsium Chloride.. Which I'm assuming is the same as sanctura? I'm debating whether or not to even take it. I was on Ditropan before & had retention and a really, really dry mouth. It was awful. I'm not sure if I dare take this new medication or whether it's even relevant to my problem. He's decided I'm presenting as an overactive bladder, but the only test he's done so far was an office cysto & it doesn't explain the occasional pain in my urethra or the sickness I get if I hold my urine too long - which is an acceptable amount of time for 'normal' people.

    What can I do?

    I want to see my GP next week (The surgery is closed now until then) & explain to her that I don't feel as though I'm being heard.. But I'm not sure what she can do. I've got to wait 3 months now for the flow rate test, he wants to see how I get on with the tablets & Nurse first.. But these are treatments for an OAB, which I might not have. ARGH. I'm so fed up of this already!

  • #2
    I don't really know all to say. OK. I will figure you have not been properly diagnosed so far. None of us enjoy having IC, or any chronic illness, but it is still good to be properly diagnosed. Yep! I was put on Oxibutynin last month as well. My mother and I went back to the Medical College of Georgia for another reason.(actually 2 different reasons) Anyway, we got to talk to a urology nurse and let her know that I could not take it any longer.(dry mouth as well)(and feeling like I was starting to get retention)(sometimes in bathrooms even more) Oh! I was giving some samples of Detrol LA. Anyhow, you are not the first person to be frustrated with a doctors visit. Besides, it seems like some of us actual IC'ers could actually teach some doctors about IC. Yep! Oh! I am not fimiliar with Tropsium Chloride. By the way, I just looked it up.(Sanctura...as you were suspecting) It is supposed to do what Detrol LA is supposed to do. OK. I am also glad you don't have incontinence after all. Yep!

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    • #3
      Just so you know, bladder training is not usually for incontinence --- it's done to help build bladder capacity, which can help with frequency. Bladder training involves delaying urinating for a short time after feeling the urge to go --- some find it really helps.

      Sanctura can help with bladder spasms.

      Donna
      Stay safe


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      • #4
        Thanks for your replies.

        Donna - I understand that the bladder training might help with increasing bladder capacity, but that's not the problem I seem to have. It feels as though there is constant pressure on my bladder. I can't wear restrictive clothes because it makes it worse. I can fill my bladder & I can hold it, even if it does cause pain after a while. So honestly I don't know how it will help?

        The Doctors won't listen, when I say I constantly feel as though I need the toilet, they take that to mean I constantly use the toilet - which isn't the case. I just feel uncomfortable & full for most of the day. It's worse if I'm out & about.. I can sit at my desk longer than I can go out walking before needing to urinate.

        I feel as though they are just assuming OAB because they can't find anything else, but they've barely done any tests to rule anything else out!

        The Urologist just sat there yesterday when I asked him what it could be & his answer was "Well, it's nothing nasty, you don't have cancer or stones so you don't need to worry" .. Which is great, I'm glad I don't have cancer, or anything as serious as that but it doesn't put me at ease! I still don't have a diagnosis & after they've done the flowrate test, I'm not having anything else done!

        They've basically done a quick exam, a cystoscopy & a urine sample. Next up is a flowrate test & if that comes back fine, they are assuming OAB & that's it. No more tests. I have the option of medication which doesn't help with the pressure feeling & makes it difficult to pass urine (& eat because of the dry mouth) or bladder training.. Which again, isn't going to help with the pressure.

        It feels as though there is something pushing on my bladder all the time. Obviously the more full my bladder gets, the more the pressure increases. Sometimes it does spasm, I've felt it, but it's not terribly often.

        I plan on explaining all of this to my GP & telling her that I want more tests doing & I would really appreciate it if she could get the Uro to bring my flowrate test forward.

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        • #5
          I really hate feeling rushed out of doctors' offices. I find it so disrespectful since you're taking the time to invest in going there. To have them not listen to you is so frustrating and can make you feel powerless. In your situation, I'd be looking for a new uro. I've found that advocating for yourself is so important, and you shouldn't have to accept anything less than someone to listen to you before offering you any treatment. It sounds as though you're still waiting for a proper diagnosis.
          ----------------------
          -Amanda
          34 years old, bladder symptoms all my life
          diagnosed with PFD and VV October 2009; IC May 2010

          Current meds:
          Cystoprotek 2 pills twice a day, Hydroxyzine 10 mg, Gabapentin 600 mg, Myrbetriq 25mg, Zoloft 25 mg, Mircrogestin, capsaicin cream (for vulva)
          Other past treatments:
          IC diet, physical therapy, Traumeel injections as needed, TENS unit, heating pad, instills with sodium bicarb, lidocaine, and mucosa compositum
          Tried and didn't work:
          Pyridium, Singlair, Nortriptyline, Elmiron, lidocaine and heparin instills (worked at first, then didn't anymore), various creams, acupuncture

          Comment


          • #6
            That's exaactly how my Uro makes me feel & I'm obviously not the worst case they've ever seen so I just feel as though I'm wasting their time
            I can't get another Uro, I'm in the UK so I have to put up with who I'm given to. I feel trapped. I'm starting to question whether this is all in my head & maybe I am wasting their time?! My GP already thinks it's anxiety based & once they assume something like that, it's hard to convince them otherwise.
            Because of NHS cuts, they probably won't run any more tests. I'm not terribly unwell, my symptoms are inconveniencing me & not causing a lot of pain so I'm not an important case. Because of this, I don't think I'll ever get a formal diagnosis, just an assumption of OAB.

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            • #7
              Originally posted by JustmeGemmy View Post
              That's exaactly how my Uro makes me feel & I'm obviously not the worst case they've ever seen so I just feel as though I'm wasting their time
              I can't get another Uro, I'm in the UK so I have to put up with who I'm given to. I feel trapped. I'm starting to question whether this is all in my head & maybe I am wasting their time?! My GP already thinks it's anxiety based & once they assume something like that, it's hard to convince them otherwise.
              Because of NHS cuts, they probably won't run any more tests. I'm not terribly unwell, my symptoms are inconveniencing me & not causing a lot of pain so I'm not an important case. Because of this, I don't think I'll ever get a formal diagnosis, just an assumption of OAB.
              I'm so sorry to hear that. You should never be made to feel as though you're insignificant or wasting their time. Maybe your GP would be willing to prescribe something for anxiety, whether you think you actually have it or not? It might end up helping your bladder symptoms too, depending on what it is. You could ask for a tricyclic antidepressant or an antihistamine and see if they work for you. Are you able to get Cystoprotek? I buy mine from Amazon. There's got to be something you can do.

              Sending big hugs your way!
              ----------------------
              -Amanda
              34 years old, bladder symptoms all my life
              diagnosed with PFD and VV October 2009; IC May 2010

              Current meds:
              Cystoprotek 2 pills twice a day, Hydroxyzine 10 mg, Gabapentin 600 mg, Myrbetriq 25mg, Zoloft 25 mg, Mircrogestin, capsaicin cream (for vulva)
              Other past treatments:
              IC diet, physical therapy, Traumeel injections as needed, TENS unit, heating pad, instills with sodium bicarb, lidocaine, and mucosa compositum
              Tried and didn't work:
              Pyridium, Singlair, Nortriptyline, Elmiron, lidocaine and heparin instills (worked at first, then didn't anymore), various creams, acupuncture

              Comment


              • #8
                I recommend getting a second or third opinion if that is an option for you. I had to get a few different opinions and finally am getting the treatment that I'm hoping will work.

                In my opinion you have to have a comfortable relationship with your doctor and if you are getting your needs met, go elsewhere.
                Frances

                Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

                Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

                Other conditions: Migraines, allergies, mild IBS.


                "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

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