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  • Endometriosis In Bladder

    What exactly is that and the symptoms of it? Can they see endometriosis when the do a cytoscopy? My periods are extremly irregular. I'm talking 8 months or more at a time.
    Looks like I'm an IC'er too

    Currently taking:

    Urised 1 tablet 4 x a day..My 3yo loves the fact that my pee is now blue

    Lexapro 10mg

  • #2
    I had endo on my bladder and ureters and it was found during a laparoscopy. I would think it would depend on who does your cystoscppy since I don't think a urologist would know what endo looks like (I could be wrong). The symptoms are very similar and both conditions often occur together. If you Google IC and Endometriosis you will find that they call them the Evil Twins.

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    • #3
      Hi,
      I also was diagnosed with endo during a laparoscopy. The urologist did the cystoscopy at the same time since I was going to be under anesthesia and found IC. I think endometriosis can only be diagnosed with a laparoscopy- that is what I was told. I had pain for years and years before being diagnosed this last Sept.
      Nancy

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      • #4
        I actually had endo grow through my bladder wall into my bladder. I had painful periods and during my period it would hurt when I urintated. I went to the doctor and they did an ultrasound which is when they could see something was in my bladder. I went to a uro, he did a cystoscopy right there in the office that same day, ouch! He told me he thought it might be cancer and that it needed to come out right away. We scheduled surgery and he removed it. Pathology at the hospital could not tell if it was cancer or endo so they sent it off somwhere else and we had to wait for the results. It came back as endo. I suspected I had endo before this because my mother did but this was the first time it was proven. Feel free to PM me if you still have questions, I'll be happy to answer what I can.
        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

        Comment


        • #5
          I also have Endo and mine had also grown thru my bladder. Like others, I had a cysto/hydro at the same time as my laproscopic surgery. My Gyno did the lapro and the Uro did the cysto/hydro. So, it can definately happen.

          My symptoms were also painful periods and urination was very painful and strained during them. I also had really bad low back pain all the time, but much worse a few days prior to, and for the first few days of my period.

          Since your period is so irregular and often disappears for up to 8 months, something is definately going on that needs to be checked out. I hope that you get into see your Gyn very soon and find out what is going on.

          Hugs,
          Amy

          Comment


          • #6
            MY OBGYN thinks I have both also, but I had a cysto at my urologist office and he said that the bladder was fine and heathy (not) no hydro was done.
            I have terrible pain and weird periods too I can't wait to be diagnosed
            How did it feel like having both at the same time.?
            I can not see a DR until the month of June , I heard she is really good but there is a huge waiting list. thank you LOREN
            :Loren

            Current Meds
            Elmiron 300mg tid
            Elavil 25mg at hs
            Atarax 50mg bid
            Tramacet as needed
            Vitamin D 2000 iu bid
            Gabapentin 300mg tid
            Uracyst instillatons one a month

            Comment


            • #7
              I also believe I have endo. My gyne is sure I have it. I am too afraid to go through a lap though. I have stomach motility issues and dont want to make that worse. My Gastro doc said I should avoid any abdominal surgery unless it is an emergency.
              I was told by my past urogyne that if a person has endo in the bladder, it will bleed during their period and that your pee will look like coke. He said that endo is very visible during a routine cystoscopy. Is that true? I am sure I have endo though. I am thinking about asking my gyne to put me on birth control to help it maybe.
              Jen

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              • #8
                Jen,
                The uro who removed the endo from my bladder was able to see that there was something growing in my bladder when he did the cystscopy. He didn't know what it was then though, he said he thought it looked like bladder cancer. Thank goodness it wasn't but I would imagine they would be able to tell if there is a mass there when they do they cystscopy even if they can't determine what it is at that time.
                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

                Comment


                • #9
                  I have IC, endo, AND adhesions! My periods were always horrendous!
                  http://www.TheCraftyEwe.etsy.com

                  Comment


                  • #10
                    I never had a cysto in the office, so I am not sure about what they show. I know that they arent real good for detecting IC, though, which is why most Uros favor the cysto/hydro performed under anesthesia.

                    If you do have endo, then it is very likely you also have adhesions, since most people who have endo also have adhesions. I do too. The endo and adhesions could be anywhere, mine were in my bladder and had spread to my bowels too. (It takes a colonoscopy to see if they have grown thru the bowels.) With your motility issues, you have probobly had a colonoscopy, but there is no way of knowing if you have endo (or adhesions) without doing laproscopic surgery.

                    If your Gyno really believes you have Endo, you might ask him/her to tell you the risks vs. benefits of doing the lapro now as oppossed to waiting, (or even never doing it.)

                    If you decide to proceed and have any questions that you want answered from the patient prospective, please let me know. I will be glad to help anyway that I can.

                    Hugs,
                    Amy

                    Comment


                    • #11
                      Hi Amy.
                      When I had the cystoscopy done back in December, It was in the Operating room and I was sedated. I actually refused to do the hydro after researching it. I only agreed for him to do the cystoscopy. He took pictures of my bladder and it was pretty inflammed and vascular looking. He said that this is typical with IC. So maybe I did not even really need a cystoscopy to diagnose it.
                      I asked him about the endometriosis being in the bladder and he said he would have seen it during the cystoscopy. He said it is possible that I have it on the outside of the bladder though but only the lap surgery would be able to diagnose that.He also said that even if the endo was on the outside of the bladder, that would not cause inflammation on the inside unless it was inside the bladder which he said it was not. I am just not keen on doing the lap due to my upper gut motility issues. My Gastro doc and I even talked about doing a lap a couple years ago thinking that my motility issues could be due to scar tissue or adhesions. But he said that he did not think so since I have good days and bad days. He said if it were all due to adhesions, I would have bad days all the time and would not have been helped at all by my med I use to take for my stomach.(I had to stop it due to my IC as it was aggravating it).
                      My motility issues are basically in the upper gut and upper intestines. I did have a colonoscopy about 4 years ago and it was normal back then. I had a small bowel manonetry test and an EGG (electrogastrogram) which diagnosed my neuropathic dysmotility of the small bowel. With the small bowel manometry test, they put a tube down the nose into the small bowel and it stays there for 24 hours and it records everything going on during the day and night and when you eat. Mine showed that my small bowel contractions were not normal, which is why I get all the nausea,severe upper gut bloat, pain and fullness feelings. I am better on the gluten free diet though as it is easier to digest.
                      I just dont have the guts to go through with the lap surgery. I guess it is a fear that my stomach will get worse. I have frineds on another board I belong to(the gastroparesis group) who have had motility issues due to minor abdominal surgeries like the lap who are now on permanant feeding tubes because of the surgery due to getting gastroparesis as a result of the surgery. Talk about pretty scary. My Gastro doc even said that there is a risk of complications if I go through with a lap more so than with the regular person who has no pre-exsisting motility issues.
                      I know I may end up having to do the lap one day though if I get worse. I just dont look foward to that and wont do it unless I really have to. I would rather try birth control first. ALso, with the endo, even if I have it, they say the only true method of getting rid of it is doing an excision surgery and to find someone who is very experienced in doing this. They say that by only burning it off, it will come back in less than a year likely and worse than it was initially.That is what scares me I guess.
                      But anyhow, thanks for the info. I will definitely let you know if I do decide to have the lap done and will likely have a ton of questions for you :o)
                      Thanks again Amy.
                      Jen

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