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Post by semicolon on Jun 25, 2012 15:41:09 GMT -5
That was like the last race I had done, I peed like three times! I think it all goes under the stress incontinence category. My PT had recommended double voiding (going twice right in a row to get rid of the little remainder of urine that can hang out) but that is not life altering advice. The frustrating part was that we were working on my pelvic floor muscles and they were a lot better, then boom, leakage! I'm with you, I've muddled through the pain but leakage is embarrassing! I wish I had more advice, we'll see if this latest surgery helps. That reminds me, I need to get back to my kegels!!
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Post by 1234 on Jun 26, 2012 13:05:19 GMT -5
the kegels help with this? It's embarrassing, but I actually push my bladder when I pee to try to get it all out, because it's so hard for me to go completely. is this more like endo on the bladder or IC or a mix?
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Post by semicolon on Jun 26, 2012 16:08:32 GMT -5
I don't remember, have you done pelvic PT? One of the things I did was biofeedback of the pelvic floor muscles. When I started, I had a higher resting tone and got nothing when I tried to do a kegel. But with some manipulation and practice I could start with a lower resting tone and get a really good contraction. So not being able to go when you want might be because the muscles are all tightened up so they can't relax, and then they also can't tighten any more when you want/need them to.
I had fibrosis on the bladder that was "like concrete" per my surgeon, so I'm sure that was at least part of the pain when peeing. I think it's hard to tell what is really the cause sometimes. During my period, it was killing me to pee and I can only guess it is the inflammation and pain preventing the muscles from working right. So far it's been better, we will see.
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Post by Karen on Jun 26, 2012 18:28:33 GMT -5
I was going to jump in on my PPT soapbox but it looks like Semicolon already chimed in with what I was going to suggest! It's not to imply that it's just the muscle tone that's causing leakage, but it could be part of the problem and might be managed through PPT. Whatever the case, doesn't sound like fun!
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Post by semicolon on Jun 26, 2012 19:32:49 GMT -5
You've made a believer out of me, Karen!!
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Post by Karen on Jun 26, 2012 19:37:32 GMT -5
Awesome, so good to hear! Not because I want the credit, but because it means you got some relief?!?!
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Post by 1234 on Jun 26, 2012 21:26:33 GMT -5
You deserve some credit too, Karen. Your dedication to all of us is amazing.
I guess I haven't gone back to the PPT for a variety of reasons. My last experience left me in so much pain, for days. I am used to a lot of pain, but this just killed me. And I know I have so much active endo, including this large endometrioma, and the intestinal endo, and everything else, and I'm just trying to manage. Maybe I should try again, but it's hard to go off in but so many directions at the same time. I am, slowly, getting somewhere with the acupuncture. It's slow, but my cycles are regularizing. This last time, my temp has even been fairly steady (normally it fluctuaties 0.5 - 0.8 degrees each day). I'm excited for that, given what Karen has said about the usefulness of that. And, I'm slowly having fewer bad days. I still ahve about 2 weeks out of 4 that are really bad/unbearable, but I now have 2 weeks that are either bearable/ignorable in the pain department. That is huge for me.
I guess all I'm saying is I can't pursue but so many things at one time, and I'm afraid of the amount of pain that happened with my last experience. Lookign back, I think the PPT was actually pressing right on the large endometrioma on my right side, whcih clearly is a problem. BUt still...
thanks for all of the support, you all. It's invaluable.
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Post by Karen on Jun 26, 2012 21:31:41 GMT -5
That sounds like progress indeed! I love how much our temps tell us. And you're right - focus on what works at the moment, but keep PPT in your back pocket if the leakage continues. Part of this awful disease is just knowing there are other options rather than feeling like you're at the end of the road.
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Post by semicolon on Jun 26, 2012 21:56:51 GMT -5
Naw, if your gut says its gonna hurt then don't go against your gut. But maybe you can work on your pelvic floor muscles yourself, like laying down and trying some kegels with contracting and relaxing (get really zen and meditate with your pelvis!) along with some self-massage of your abdomin. Do you have difficulty peeing the same on your good weeks as your bad? Also, have you tried following the IC diet (avoiding caffeine, citris, loads of water)?
My PT talked about retraining the bladder to go every two hours, but I didn't do much with that but it could help with frequency. Great about the temps! You really are working hard at this, even if the endo deck is stacked against you!
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Post by 1234 on Jun 27, 2012 11:22:53 GMT -5
I love the phrase get really zen and meditate with your pelvis! The funny thing is, I actually work intentionally on this, in teh bikram yoga. That yoga is pretty impressive for stretching out the pelvic adhesions and helping you figure out which muscles to engage and which ones to relax and how. I credit the yoga as being HUGE in my pain management and inflammation control. I didn't got for about 1.5 weeks when I was on the prednisone because I knew the heat would irritated the poison ivy, and when I went back and tried to bend, I just screamed--the adhesions had tightened up that much in that short of time!
I'm pretty good on the IC diet, and I drink a TON of water. Though that night I had had 2 medium glasses of wine, so maybe that set me off? Who knows. the difficulty peeing/urgency DEFINITELY gets worse at the worse pain points. Thanks for the help!
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Post by omaklackey on Jun 27, 2012 20:06:15 GMT -5
Wine is very, very bad for irritated bladders!! Its a diuretic because its alcohol and its also extremely acidic. So if your bladder is angry and hurting you just poured acid on an open wound. I'm sure you can see how that would be bad. Its worse then drinking caffeine soda pop. If you are having any urinary issues at all you need to stay away from all alcoholic beverages. What you described as your leak sounds like overflow incontinence, which is caused by weak bladder muscles and a lack of emptying. Its a problem I have as well, mine is related to the IC and the cystocele. Also bladder training is very helpful for overactive bladder issues but you need to be doing it with an actual diagnosis. You wouldn't want to hurt yourself holding in urine if that's NOT the actual problem. I had a tear in my bladder muscle/wall and the pain of holding it in was due to that. Had I tried to do bladder training before my lap I would have caused really bad pain and long term damage. I really think a good urologist, preferably a gyno/urologist is a necessity for those with continuing bladder issues. I lived with all these problems for so long and it wasn't necessary!
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Post by 1234 on Jun 28, 2012 8:21:18 GMT -5
interesting, thanks Omak! I hardly ever drink, but since I was at this wedding decided to have a drink, so maybe that was my downfall. Pretty immediate effect!!
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Post by misslauren on Nov 11, 2012 20:59:06 GMT -5
Just going to swoop into this wonderful thread and say YES. I am currently about to have my first lap to diagnose and treat, but ever since I first got my period at 9 I had a lot of 'UTIs'--they never (or rarely) came with an infection, and were unexplainable. I have always had the more common symptoms of endo, but it wasn't until I came off BC recently that I began to connect the dots between my bladder issues and my endo. During the week before my period, I get the constant sensation of needing to pee, and pain at the end of my urine stream (this pain reminds me somewhat of cramps). It's awful, and I am convinced it's the endo. My gyno, who is performing my lap, could physically feels nodules on/around my bladder, and it was painful to touch. Not cool. So, I definitely know how this feels!!!
So glad for this message board!
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