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  • Does cystoscopy show endo

    QUESTIONS: Does a cystoscopy show endometriosis IN the bladder? Can it also show endo on the outside of the bladder, or is there another way to confirm this?

    I have been diagnosed with severe endometriosis and adhesions (surgery 4 years ago) and IC (cystoscopy with hydrodistension)...I always have pelvic pain and bloating...my bladder pain has gotten worse over the past 4 years...I use the restroom anywhere from 15-40 times a day and the urgency NEVER goes away...at times, it's so severe I feel like I'm going to lose my mind (trying to sleep is horrible)...my gyno thinks:

    1. I might have endometriosis attached to my bladder.

    2. My IC is getting more severe.


    He gave me two options:
    1. cystoscopy (my last one was about 2 or 3 years ago) to see how bad my IC is presently
    2. LUPRON (if it is endo, this will shrink the endo...if my pain eases up during use of LUPRON, than we know it was the endometriosis causing most of the pain, as opposed to my IC)



    Should I do the cystoscopy first?
    I'm desperate to end my constant pain.

    Things I've done for endo and adhesions: continuous use of birth control pill...deep tissue massage to break the adhesions apart
    Things I've done for IC: bladder instillations (8), Pyridium, Diclofenac, Flexeril, Tylenol, Vicodin, diet, TENS UNIT, heating pad, etc...ALL WITHOUT MUCH SUCCESS...much worse now than a year ago
    Last edited by Melanie526; 06-03-2011, 04:03 PM.

  • #2
    A cysto is looking at the inside of the bladder --- nothing on the outside of it would show.

    Donna
    Stay safe


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    • #3
      I also have endo and my obgyn also wants me to have laproscopy to check endo on bladder. Since I'm due to have cysto/hydrodistention do urologist do laproscopies too so it can all be done in one shot?

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      • #4
        rmmslat

        Not sure...I know my urologist told me he couldn't check for endo on the bladder (said my gyno needs to address it)

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        • #5
          I can't have laparoscopic surgery b/c several doctors (including one at Cleveland Clinic) said it was too risky (long story short...had emergency laparotomy 4 years ago...had one of the most severe cases of endo and adhesions doctor had ever seen...my organs aren't where they are supposed to be, and there's a huge risk of nicking something if they go in with a laparoscope (I would have to have open incision again, and that was a horrible recovery and I've had constant issues since that surgery-IC, IBS, severe adhesions).

          It makes it hard though b/c we can't really check to see how bad the endo is...we're kind of guessing on what is causing most of my issues...adhesions? endo? IC?

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          • #6
            Bladder Endo

            Originally posted by Melanie526 View Post
            I can't have laparoscopic surgery b/c several doctors (including one at Cleveland Clinic) said it was too risky (long story short...had emergency laparotomy 4 years ago...had one of the most severe cases of endo and adhesions doctor had ever seen...my organs aren't where they are supposed to be, and there's a huge risk of nicking something if they go in with a laparoscope (I would have to have open incision again, and that was a horrible recovery and I've had constant issues since that surgery-IC, IBS, severe adhesions).

            It makes it hard though b/c we can't really check to see how bad the endo is...we're kind of guessing on what is causing most of my issues...adhesions? endo? IC?
            Sounds like we have a lot in common. I was searching the web yesterday about bladder endo. I found this site that was informative .

            http://www.centerforendo.com/askcec.htm#bladder
            Diagnosis: Endometriosis, IC, PID, PCS, PFD, PN/PNE, VV, fibro, Pelvic Adhesions, DDD, Hysterectomy at a young age. Unable to take estrogen, causes pain—extremely bad pain.

            Thankful: For all the support and comfort I receive on this site.

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            • #7
              I had a laparoscopy May '10 to remove deep endo lesions. At the same time, my Uro did a cystoscopy, found hunners ulcers, and diagnosed me with IC. Since then I have had some good periods of time but most of the time I've been suffering from one of these conditions. I am in month 3 of Lupron treatment. For ME, it's not bad at all. I don't have much endo pain (though sometimes I wonder, because it's hard to tell the difference...). Best of all, I haven't had a period since APRIL and it has been such a relief! We are trying to get pregnant and hoping that Lupron will give my body the rest it needs to make a baby.
              As far as IC, I just try to stick to the diet, and enjoy the time as pain-free as possible.
              Good luck!
              renee

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              • #8
                ReneeWest

                I'm not sure if the endo is causing my pain or not...I'm on the pill continuously, so I never have periods...I always have pain and pressure in my stomach, and not sure which issue is causing it (endo, adhesions, IC)...I'm willing to try Lupron though...just waiting to see what the cystoscopy shows...and I'm going for my first BIOFEEDBACK therapy for PFD on Monday.

                I just need to figure something out...I'm so depressed b/c of the pain and I cry every single day...I feel like nothing is going to help.

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                • #9
                  Thank you so much for getting back with me. Yesterday I had an apt with my Rheumatologist and informed her of the ER visit due to bladder and she informed me that IC is unfortunatley affiliated with the inflammatory disease that I have and there is not much to do except the bladder instillations. Have you had one? Are they uncomfortable? I haven't had a spout with pain in a couple of years and hoping that this will just go away. I feel much better but it's still annoying especially when I lay down or have alcohol...which is really irritating me. It would be nice to have a couple of beers. But when I do...forget it. Bathroom every 5 mins and the discomfort. Wish some surgical procedure can fix this!!!

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                  • #10
                    oh how I wish there was a surgery to correct this! I'd be standing in line at the Hospital!
                    I know some people can tollerate some alcoholic drinks, but I can't. Not even a sip of wine or beer. That wasn't as hard to give up as coffee!
                    If I manage my flare immediately, I can usually get it under control in a day or two, sometimes even a few hours. But if I let it get away from me, and keep eating something I'm not supposed to, or get super stressed out and don't get it under control, my flare can take a week or more to go away.
                    I guess what I'm saying is... if you know the beer is getting to you, you really need to try to cut it out. You will feel better in the long run. Don't mean to lecture... just trying to help, and be supportive.
                    About the bladder instillations, I'm a total baby. I've had my ob/gyn and my Uro suggest it several times but a catheter is the worst form of slow torture for me. I absolutely can not tollerate them. And I've had some traumatic experiences in my past (ER horror stories) with cath's, so I just won't let them do one unless they knock me out first.
                    Hope someone can give you an answer on that.
                    Renee

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                    • #11
                      Wow....thank you so much. I can't even begin to tell you how nice it is to talk with someone who is going through the same thing. Hope you dont mind if I bug you later with more questions. Thanks again....

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                      • #12
                        no problem! that's what we're all here for. sometimes this disease can make you feel isolated... same with endo. most people just don't understand.
                        you can chat with me anytime.
                        renee

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                        • #13
                          rmmslat

                          I've done several bladder cocktails...I was scared to death to try them b/c people told me the pain was horrible...I finally decided to go for it, and it wasn't bad at all...as long as they numb you with lidocaine before they cath you, it shouldn't be bad at all...I think it all depends on who is doing the procedure...the worst part is holding the medicine in your bladder for an hour...I wish the instillations would have helped me, but they didn't...in fact, I'm worse now than when I started them back in the fall.

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