TAH: 3/13...Bladder, bowel problems, gas...severe pain??

Hi friends,

Was just wondering if anyone else has these issues? awaiting surgery but I feel like when I tell the doctors some of my symptoms they look at me like I am nutts!!!

I have moderate to severe pain when I feel the urge to urinate and it is worse when I am actually doing it...burns from the inside out very uncomfortable...and no I don't have a bladder infection..in fact I have been screened for a bladder infection so many times they are sick of seeing me at the office lol

My bowel issues are even worse because I had a previous back surgery and now have 2 rods, 6 screws so I have to take stool softners everyday just to be able to go but the problem is that when I need to go my pelvis feels so full because of endometriosis pain and complications...that I can't push at all...not even a bit...my insides feel like they are going to fall out...a bowel movement brings most people relief but I feel nothing but anxiety when I know its "time to go"...it is soooo painful. Gas build up due to the fact my bowels don't function is horrible as well.

I had laproscopic diagnostic surgery just in November finding out about the endometreosis and the doc said it was everywhere...in my rectum, on my bladder, uterus..my pelvic wall was frozen to my uterus...it was in and on everything. I feel the same if not worse now then I did before they removed it all...my guess is they didn't get it all...it was also wrapped all over my bowel and bladder...so guessing it is back and worse then ever...and one more thing when I sit down on a chair, couch, wherever,,,,it feels like something is being rammed up my behind and my vagina at the same time..not trying to sound rude here but that is the only way I can explain it...I often have to sit sideways or lie down to get away from the pressure of sitting like a normal person would....

I guess my question is...does anyone else experience this discomfort or pain..same symptoms??? my one doctor looks at me like I am crazy when I explain the pain when sitting, going to bathroom etc...?????? and intercourse I won't even go there, that is a whole different topic....was wondering if this is normal for endometriosis or is it possible I have more going on inside then I know yet?? I have some upcoming scans and tests but I don't want any BIG surprises....is this normal?? It is so frustrating when you can't even have a pee or poop without horrible pain...it should be a relief...I dread the bathroom...and I am concerned about the endo being on my bowel, I don't want a blockage in my bowels??? very scared something else is wrong

I have similar bowel issues. My doc says it's not uncommon with endo. I try to walk around when the gas is bad. I also don't go to the bathroom until I feel like my muscles have relaxed enough that I won't have to strain when it's time to "go". Don't know if that's a good idea or not, but it seems to help reduce the pain during the BM.
As far as the bladder issues go, I've had them bad for over two years now. First thing I'd like to say is if like I was, you're being told to drink cranberry juice (or take the pills), STOP! While being helpful for bladder infections cranberries are actually huge bladder irritants. So are most fruit juices like apple juice. Cranberry is one of the #1 irritants though so stay away. Tomato products, citrus, caffeine and peppermint are also big irritants. My burning is gone most days just from avoiding those. I also have bladder relief when I reduce wheat and dairy. They tend to be common bladder irritants for many people. My new urologist (I had to get a second opinion) said he's seen people become new people overnight just by cutting out fruit juice. It does nothing for my frequency, urgency, nocturia, or bladder pain, but it has made a HUGE difference in the all day burning and pain during urination. I was always tested for bladder infections and rarely were they positive so I understand your pain. My urologist also recommended that I walk at least 15 minutes twice a day for my bladder tone. That has also helped. With my personal case I have to drink 2qts of water and have had to self cath daily in the recent past. But that's mainly because my last uro misdiagnosed me and actually made my bladder worse. Pee when you need too. Don't hold it! Even if it has literally only been 1 minute since you last did it. My urologist strongly believes that my gyno problems are irritating my bladder. When I asked him if my bladder could survive a hysterectomy, he told me point blank that it would likely help my bladder instead. He then went onto a long lecture about how women are told that they are imagining their pain and get ignored or not taken seriously. That we know what we are feeling and that there indeed is something going on that needs fixed. That was so wonderful to hear! Don't forget just because you've found some nonbelievers (trust me most of us have to) doesn't mean you're crazy or that you're imagining things. It just means, as my urologist says, "they need to shut up and do their job." Which he felt included reading up on recent studies to get out of the past beliefs.

Sitting does increase my pain as well, although I believe that is more my pelvic congestion than anything else. Laying down or reclining some relieves a lot of that pressure although it doesn't take the pain completely away. I wish I had something helpful to say for that, but I don't. I've been struggling pretty bad with this one the last couple of days myself as my uterus has decided I need a last period.

Hope my novel helps you some. If you have any questions or just need to chat, feel free to pm me. I'm getting nervous myself for mine and I'm on here often enough to see the message good luck Lisa and I hope things improve for you!

Oh how I feel for you, with your surgery only a week away....you must be very scared and anxious I feel for you my friend!! Thanks so much for your reply and taking the time to send a very explained reply at that..I do appreciate all input.

I guess I never gave it a lot of thought that you are probably right about pelvic congestion...I guess with things not functioning right and being "full" with endo and gosh knows what else...my pain is more than likely from that. I never wait to pee as I can't, so I never hold it...I feel like I am always in the bathroom...as for BMs I do the same and wait til I am more than ready to go as I can't push on any level anyway and have to take softners to go...when I get constipated its an ever bigger battle...won't even go there lol

I don't drink cranberry juice, I hate it..I also don't drink fruit juice or very seldom anyway...I do drink a few cups of coffee daily but there is no way I can eliminate that...coffee keeps me sane...and other than that I drink water and more water. It never seems to matter...my bladder always burns when I have any amount of urine inside and hurts and burns twice as bad after I have voided...and as I said I am always running to doctor to rule out bladder infections to make sure that isn't what it is...I get so frustrated though..I almost want them to walk in the room and say 'yes' you have a bladder infection..but the answer is always no...then on come the testing...ultrasounds..bloodwork..scans...because obviously I am there with pelvic pain but no infection...it makes me so angry....and I forgot to add before the flank pain...in my back...oh dear...it hurts so bad...and I have a horrible back to begin with so it just complicates matters far worse.

I walk about 30-40 minutes everyday...never miss..I do this to keep my back ok and also because I have poor circulation in my legs since back surgery and nerve damage...have seen some docs who have blamed my pelvic pain on my back issues...I feel ignored...but I finally have everyones attention. Thank you for sharing and at least I know I am not crazy or alone...I will be so happy when I can sit down and have a normal pee and or BM without the agony....it sounds like you have had quite the time with these issues as well and I sure hope they improve after the 18th...I will remember your surgery is that day and will be thinking about you...my Dad passed on that day 25 years ago when I was just a young girl...very hard day for me...so I won't forget you and will check in with you after your surgery and when I see you back online. Thanks again for listening and helping <<hugs>> and God bless

Lisa