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  • Sorry, long email ahead!

    Boy, I don’t know where to start. But somehow I think that by writing about this, I will feel better. Or I hope so!

    Well, I’m a 55 years old woman. When I was 16 years old my urethra was accidentally punctured by a doc who was trying to obtain a “clean” urine sample. I hope they don’t do that to girls any more! This was incredibly painful and I had a few bladder/kidney infections into my 20s or so. But then, they stopped.

    Somewhere during those years I also began urinating all the time. In fact, I can’t remember a time in my life where I haven’t had to use the bathroom within a 1-2 hour time span. For me, it just seemed normal and, honestly, I have just accommodated for it. I won’t go anywhere unless I know that there will be a bathroom and I know where every bathroom is in every grocery store, restaurant, gas station near my house and on the road to a place I frequently travel. I know this about myself, and people just understand this about me.

    And then … in October of this year I woke in the middle of the night and was peeing blood and blood clots. In addition to this, I was urinating sometimes every five minutes and I found out WHERE my bladder was – it was incredibly painful. The only thing that seemed to help was piridium and sleeping with a heating pad. I called my OB/GYN and, long story short, after four different antibiotics over the course of a month, I wasn’t much better (although the visible bleeding stopped after the first night and I was urinating more like ever ½ hour instead of every 5 minutes for a few weeks).

    Finally went to a urologist who at first thought that I had bladder endometriosis. I have had endometriosis for many years although it has been under control for the last 8 years or so. I am on birth control and even at the ripe age of 55, I am still menstruating.

    The urologist ordered a cystoscopy. As I was getting dressed following the cystoscopy the urologist came in to tell me that a) he found a small bladder tumor and b) that something on the order of 90% of bladder tumors were cancerous. He went on to tell me that they could remove it through surgery, etc.

    Long story short, it WASN’T cancer! Instead, I was a lucky one … what they removed was a benign tumor called a Brunn’s nest which I understand is a bunch of vascular and glandular material all mixed up. I have not been able to find much information on benign bladder tumors or Brunn's nests. The urologist explained that this could have been congential or it may have formed as a result of the trauma to my bladder when I was 16. He also explained that my bladder did not look “normal.” He was hopeful that in 6 weeks time, I would be better and back to normal.

    Well, I am back to “normal” but normal for me is urinating once every hour or two. No pain, no pain with intercourse, no incontinence. Just frequency. When I told the urologist this on my followup appointment he conjectured that the Brunn’s nest was a “red herring” and that either there was something structurally wrong with my bladder or I had IC.

    Going with the “something structurally wrong” diagnosis, he prescribed Flomax for me. His thought was that perhaps the Flomax would relax the bladder neck. I think he was trying to explain that based on my symptoms it seemed that my bladder was saying GO and my urethra was saying NO.
    The Flomax hasn’t helped (been on it 3 weeks). But no erectile dysfunction! He he he. Back in October, following the heavy antiobiotic regime, I gave up coffee and all of the foods I thought could be making my bladder wacky. About a month ago I finally gave up and introduced decaf coffee and all the foods I thought were making my bladder wacky. I don’t think it is the food because nothing has really changed, although I am not quite ready to give real coffee a try.

    I have two questions right now:

    1. Does my story sound familiar to anyone else? Has anyone had a benign tumor removed and what was the recovery period? The urologist seems to think that I should be better by now (8 weeks post surgery) but I’m skeptical.

    2. If I am not in pain, and I have learned to accommodate my freaky bladder, what is the downside to urinating often? The urologist didn’t seem to have an answer for me. Is urinating often bad for your bladder or kidneys?

    There’s much more that I’d like to say/ask but if you’re still reading this … I’ll bet you’re bored.

    Thanks much. I DO feel better already!

  • #2
    Hello I have no idea as to the answers to your questions instead I wanted to let you know I was NOT bored reading your story in fact the opposite...I can't understand how a big blunder on diagnosis could happen shouldn't they have been absolutly sure before saying the c word? I'm not sure if many would agree with me but I honestlt think if it's not broken don't fix it! I'm concerned about invasions into the bladder (I know this has to be done at times) but an invasion it is and for this I think there must be an element of shock to the body ..like a trauma...also should people not have anti biotics after the "invasion" I think so , anyway sweetness, some one will come along amd give the answer you are looking for good luck and a healthy future love from Madi xx

    Comment


    • #3
      I have two questions right now:

      1. Does my story sound familiar to anyone else? Has anyone had a benign tumor removed and what was the recovery period? The urologist seems to think that I should be better by now (8 weeks post surgery) but I’m skeptical.

      2. If I am not in pain, and I have learned to accommodate my freaky bladder, what is the downside to urinating often? The urologist didn’t seem to have an answer for me. Is urinating often bad for your bladder or kidneys?

      There’s much more that I’d like to say/ask but if you’re still reading this … I’ll bet you’re bored.

      Thanks much. I DO feel better already!


      Hi and welcome to the board!

      I don't know the answer to question #1.
      #2 - I don't think its "bad" for you but the downside that I'm aware of going every hour or two is that over a long period of time your bladder will shrink and you will hold less and less and you will need to go even more often. I read this in Dr. Moldwins book ( an IC specialist) and elsewhere. Did he talk to you about bladder re-training? Personally I hate that "feeling" like I gotta go to the bathroom all the time but like you, my entire adult life I have had to go about 8-10 times a day and have always just thought it was kinda normal for me but have been told its not and my bladder can hold alot more then I'm going. Anyways, the bladder re-training has been helpful and now I go every 2 to 3 hours which is an improvement. You can look it up on-line but basically you ignore the urge to go and only go when a certain specified time period has passed. It "teaches" your bladder to quiet down. Its slow going but helps.

      The diet is good whether you have IC or overactive bladder symptoms. My frequency is definitely worse depending on mostly what I have drank and sometimes eaten.

      Honestly, I can't figure out why your doctor put you on flomax????? There are other overactive bladder meds that relax your bladder muscles and are not meant for men. I take vesicare but there is ditropan and others. If you don't have retention they are very helpful in slowing down that frequency issue! Sometimes I can go up to 4 hours when I'm good about taking the meds.

      Good luck, and your post wasn't boring

      P.S. I just read that sometimes flomax is prescribed for women to help with urinary retention. Were you told that you were retaining urine?

      Madi Personally, I do think people should have antibiotics after the "invasion". My doctor gives me a macrobid anytime he puts a catheter inside me.
      Cindi


      Gelnique for frequency/urgency - works great
      Macrobid after sex
      Prilosec, continuous birth control pills
      synthroid .088mg, mucinex-d, restasis

      Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

      Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

      IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
      AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
      AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
      Great treatment flowchart on page 19 of the pdf

      Comment


      • #4
        hello cindy nice to meet you.. mabe it's an individual thing what I mean is each person should ask for infection protection
        love from madi

        Comment


        • #5
          Originally posted by madi View Post
          hello cindy nice to meet you.. mabe it's an individual thing what I mean is each person should ask for infection protection
          love from madi
          Hi! I agree with you.
          Cindi


          Gelnique for frequency/urgency - works great
          Macrobid after sex
          Prilosec, continuous birth control pills
          synthroid .088mg, mucinex-d, restasis

          Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

          Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

          IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
          AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
          AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
          Great treatment flowchart on page 19 of the pdf

          Comment


          • #6
            [QUOTE=madi;570777]I can't understand how a big blunder on diagnosis could happen shouldn't they have been absolutly sure before saying the c word?

            Hi Madi: Thank you for your response. I am finding that writing about this is really cathartic, so please bear with me ...

            My best friend is working on his phD in nursing and when he heard the diagnosis of bladder cancer he was perplexed and, in fact, really angry. The urologist had asked me if I smoked. I explained that I had smoked when I was in my 20s. What my friend was angry about was that the urologist had NOT asked me how much I had smoked and how long I had smoked because, I am told, there is a correlation between HEAVY, LONG-TERM smoking and bladder cancer (which doesn't fit my profile).

            Nevertheless, I felt it wise to prepare for the worse. In fact, this may sound sort of twisted but here goes. I have worked as a hospice volunteer for 15 years. I have much experience with people who have been given a terminal illness diagnosis. What I haven't experienced with my work is that stage before diagnosis ... when you are waiting, anxiously in my case, to hear what the results are.

            I believe that having gone through this, I have much more insight and even more compassion for my patients who are trying to get through each day with a terminal illness diagnosis. So, again, as twisted as this may seem, I am grateful to have gone through the process for this purpose.

            All of that said, those days (waiting for the biopsy results) were some of the darkest in my life. The reason for this is that the cystoscopy, which was done while I was wide awake, was really painful for me. I don't want to scare anyone reading this because I think my case is a bit unique. My urethra had been punctured by a doctor when I was a teen and I truly believe that it probably wasn't as painful as it was traumatic for me. I was actually re-living a terrible event from my past.

            I knew that with a diagnosis of bladder cancer, I was faced with a cystoscopy every 3 months, probably for the rest of my life. I could just see my whole life changing in a way that, at the time, wasn't acceptable to me. (Not that I had a choice!).

            When the urologist gave me the news, a few days before the holidays, that it was a BENIGN tumor (he was so surprised that he called the pathologist to confirm before passing this news on to me), I couldn't help but burst into tears. In fact, I am still emotional about that moment.

            I even had his nurses crying before I left that day. I am incredibly thankful that it wasn't the cancer diagnosis and, in fact, in some way, perhaps this is why I am loathe to accept any other conclusion other than this is the way my bladder is, this is the way my bladder will always be.

            So, I guess what I wanted to say is that because I had the one night of visible bleeding and a few weeks of very bad bladder stuff going on (which may have been a result of the benign tumor), the urologist and my OB/GYN felt it was necessary to do the cystoscopy and the surgery. I am more like you ... if it ain't broken don't fool with it (I have successfully resisted all kinds of stuff like this related to my endometrosis), but this episode scared me.

            It is still unclear whether the benign tumor was causing all of my problems all of these years or if the tumor was a red herring and that maybe IC is the culprit.

            Thank you for your wishes and kindness Madi. I appreciate it.

            Comment


            • #7
              Hi Cindi:

              I asked the urologist about bladder retraining and he said: "nah, it won't help you." Given what you've had to say, I think it is worth a try.

              Do I have urinary retention? Heck if I know! I'm not really sure exactly what that means. It is similar to the other question he has asked me: "Is your urine flow weak or normal?" I'm not exactly sure how to answer that question. I know that one time when I was sitting on the toilet in a public restroom I was listening to someone else urinate and thought: "OMG, your flow is weak." Not until I exited the restroom did I realize that a man had accidentally walked into the women's restroom so I was listening to him!

              He thought the Flomax would help if there was a problem with the bladder neck. I have been on it now for a little under a month and a few days ago I had two nights in a row in which I only got up twice to go to the bathroom. Last night ... different story.

              So, I'm not sure the Flomax is helping OR perhaps my bladder is needing more time to settle down after the cystoscopy and surgery. I'm hanging on to the good days and trying to remain optimistic.

              Thank you for the welcome!

              Linda

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