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  • dawnshapiro
    replied
    Well, I do not have any typical blockage problems and the uro. did not mention that. I feel much better, but still not 100%, so I will look into that.

    Feel free to ask anything else.
    Thanks.

    Leave a comment:


  • mjlabieniec
    replied
    I also wanted to say that I have also been diagnosed with urethral blockage or "bladder neck obstruction". I sometimes sit at the toilet and it takes like an actual minute or two to get all the pee out. Plus I had pain/discomfort and other symptoms as well. It comes out super slow and they said that was a problem. But with meds. not helping me they further tested and did a cysto and diagnosed me with cystitis or something like that. He never did discuss anything with me about that and I'm a little scaredy cat who doesn't speak up. More meds proved to be ineffective and I was then scheduled to get the hydro in the hospital. When I went for my post op. they again were very quiet about the findings so I decided to speak up. I never would have known there were photos of my bladder if it weren't for this site!!!!! So, I asked to see them. Sure enough my bladder was extremely red and veiny. The dr. said that that is an IC bladder! But I guess they took tissue to be tested which turned up negative for IC. Well, they diagnosed me wit IC anyway because they have no other diagnosis for me and a lot of my symptoms are like that of ic while others are like that of something else in which they don't know anything about. He also said that until the world or drs. has a better understanding of IC (it's still somewhat a mystery to drs.- they don't know the cause and can't find a cure) they would treat like I have it. He was also relieved to find out that the hydro has me feeling better. I can just imagine how helpless drs. feel when nothing helps ic patients. So, he was happy and said I will prob. need one every 6 months to a year. Hopefully it will always work for me! Even though I am a little confused at what's wrong with me, I can't complain because I feel amazing!

    Well, look, I've written another book. I would like your feedback about the whole urethra blockage thing. Is that what they were saying to you? That something may have been causing your urethra to swell at the openig or anything like that or that it was blocked? I do have to say though that I do have other symptoms that other icers have. It may be that I have enough IC symptoms that they were able to say I have it. Also my bladder was clearly ic-like and not every dr. takes tissue from your bladder. Many women are diagnosed from a simple cysto (where all they do it look at your bladder). Why did the tissue they took say I don't have ic, I wonder? Oh well. They did say there is no full proof test to diagnose any woman with ic. IC is just this great big mystery I guess. It's a disease being studied and not yet mastered. THe thing that scares me is that cancer has been around for ages and is not yet mastered either! Just something to think about! Well, I gotta go. I'm sorry I wrote another book on your thread. grouphug

    Melissa

    Leave a comment:


  • mjlabieniec
    replied
    That's awesome that they were able to tell you that not only do you NOT have IC but that you aren't crazy and something IS wrong with you. Not that I or anyone want you to be in pain, but it's a good feeling to know that it wasn't in your head. It's also wonderful that you feel better!!! I'm so happy you were able to find relief. YOu are definately a success story. I believe some women get lost and aren't able to find relief as you have because they aren't properly diagnosed. I have read and heard (even from my own dr.) that they say women have IC when they simply can't give them another diagnosis. Drs aren't sure what's wrong so they tell them they have IC when they really don't. Meds are tried and whatever else and they find no relief. Imagine you were diagnosed with IC. You would be given everything under the sun because nothing would help and it would all be because they didn't diagnose you correctly. So, I'm happy they found the true cause of your discomfort and pain and that it could be relieved. Congrats! I am sooooo happy for you.

    Melissa

    Leave a comment:


  • dixiefireball
    replied
    Wow Now this is wonderful news its about time. I so glad you don't have IC and this doctor had done something to help you it is so sad to have to go to a dozen of doctors before many of us can even get dx. and most of them make us feel lozy about our self and say it is all in our head or we are doctor shopping for pills Only if they had to walk just one day in our shoes when we are flareing then they would understand.
    I'm so greatful you found a doctor to help and most important thing listen to you.
    Please keep us posted on your out come.
    grouphug

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  • tillysav
    replied
    Glad you don't have IC and are feeling better. Thanks for posting your results. Interesting. Take care.

    Leave a comment:


  • Britgal
    replied
    That is really good news Dawn, hope you feel better really soon, hugs Iris. hi grouphug

    Leave a comment:


  • ICNJess
    replied
    Woohoo, that is fantastic news, Dawn! So glad you don't have IC! Here's to feeling better!

    Hugs and health!
    Jess

    Leave a comment:


  • erinaj1997
    replied
    Dawn,

    I'm so happy to hear you don't have IC.

    Erin

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  • vm
    replied
    That is so VERY cool to hear!!!! Yay!!!

    Leave a comment:


  • Kelli
    replied
    Dawn,
    I am glad to hear that someone was finally able to give you a diagnosis. Now you can get on the road to feeling better!


    Kelli

    Leave a comment:


  • dawn217
    started a topic Doing Better...

    Doing Better...

    I want to post this and let everyone know what my final Dr. opinion is. I've seen 5 or 6 urologists and gynos in the past two months.

    My symptoms are always a urethral burn and pain AFTER urinating. Also, pain on relaxing the pelvic floor muscles. Also, my bladder capacity is quite large.

    Well, I went to a Dr. at Scripps in SD and he examined me. He was exactly able to replicate my pain.

    I have been told that I have "female prostatitis." An infection and inflamation of the glands surrounding the urethra. There is some info on the ICN about it under antibiotic therapy.

    I'm on one month of Levoquin 500mg and after 10 days I feel much better!

    What surprises me is that no other Dr. thought of this. My symptoms don't match those of IC, rahter a "urethral syndrome." And I was seeing some of the best doctors in S. California.
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