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Pain AFTER Urinating - Not Before

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  • Gerardine
    replied
    Re: Pain AFTER Urinating - Not Before

    I had this problem immediately after my last hydrodistention (HD). My doctor said it was because of my bladder walls touching when empty and that because of the HD, they were more sore than usual. This problem is lessening now but I still feel less pain when there is some urine in my bladder. I only know 2 people in real life with IC and one of them has this problem but as long as she keeps some urine in her bladder, she is fine.

    I've also read that this is due to pelvic floor disfunction.

    Gerardine

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  • marip1
    replied
    Re: Pain AFTER Urinating - Not Before

    I also get the pain after I urinate, but doesn't happen every time after urination. The pain lasts a minute or 2.

    Leave a comment:


  • ICNDonna
    replied
    Re: Pain AFTER Urinating - Not Before

    Originally posted by Onthespot View Post
    Has anyone had this explained to them. My pain has recently become worse in the am after the first two morning bathroom stops. It is like someone pours acid in my bladder and urethra after I pee. When I wake I just have a severe urge to urinate after about 6 hours if sleep, but no pain. After I go though the pain comes on within seconds this deep horrible ache in my bladder all across my pelvic area and urethra. I can't go back to sleep and would take pain meds daily if I coukd, but I won't and don't. As the day progresses the pain gets slightly better, but that am stuff really hurts. I actually dread going to bed at night.

    Has anyone had a doctor explain this? Is it the bladder walls touching that hurts, or that the bladder wants to be stretched out so when it collapses the lining hurts? I am scared to have a hydro it cysto as I can't imagine the pain getting worse. No infection, no blood, just pain, frequency, urgency.

    I have done pf therapy, instills, various meds, diet, nothing had helped yet. One person says IC, one says, PBS, pelvic floor dysfunction, pudendal nerve issues. I just don't get the pain in the morning that is so severe. Thanks and hope someone has found the magic cure. It has ruined my life since an unecessary hysterectomy. No bladder problems before then.
    Merry Christmas
    I also developed IC following an abdominal hysterectomy, which I now call the abominable surgery!

    I suspect that the reason for the early morning symptoms is that I can sleep for more hours than I usually go between urinations. It could also be that my bladder just doesn't like to be empty with the sides touching. PBS (Painful Bladder Syndrome) is another name for interstitial cystitis --- it definitely sounds like that's an accurate diagnosis.

    I am one who is helped by hydrodistention --- however, I don't recommend it as a first treatment choice. There's a link to the AUA Guidelines For Treatment in my signature below --- you may find some options there to discuss with your doctor.

    I also hope for a cure in the coming year.

    I hope you had a nice holiday.

    Warm hugs,
    Donn

    Leave a comment:


  • Onthespot
    replied
    Re: Pain AFTER Urinating - Not Before

    Has anyone had this explained to them. My pain has recently become worse in the am after the first two morning bathroom stops. It is like someone pours acid in my bladder and urethra after I pee. When I wake I just have a severe urge to urinate after about 6 hours if sleep, but no pain. After I go though the pain comes on within seconds this deep horrible ache in my bladder all across my pelvic area and urethra. I can't go back to sleep and would take pain meds daily if I coukd, but I won't and don't. As the day progresses the pain gets slightly better, but that am stuff really hurts. I actually dread going to bed at night.

    Has anyone had a doctor explain this? Is it the bladder walls touching that hurts, or that the bladder wants to be stretched out so when it collapses the lining hurts? I am scared to have a hydro it cysto as I can't imagine the pain getting worse. No infection, no blood, just pain, frequency, urgency.

    I have done pf therapy, instills, various meds, diet, nothing had helped yet. One person says IC, one says, PBS, pelvic floor dysfunction, pudendal nerve issues. I just don't get the pain in the morning that is so severe. Thanks and hope someone has found the magic cure. It has ruined my life since an unecessary hysterectomy. No bladder problems before then.
    Merry Christmas

    Leave a comment:


  • bri1121
    replied
    Originally posted by greeneyes View Post
    bri1121, (short version) after a 1 1/2 years of no UTI but always a trace of blood in my urine, pain on and off not constant until the last 6 months or so, I was referred to a urologist, had a cystopscope that gave me sever pain, I then called my uro and had to see his partner(mine was on vacation) he's the one that told me all my symptoms were IC related and I received my first instill that day. I just had my first hydro-distention a few weeks ago and only got about 10 days of "almost no pain". The results of the hydro showed "minor cracks" nothing the uro was worried about. So the journey with IC began. I do hope you find relief soon.
    I am so scared of the cystoscope! Or whatever that is. I believe mine to be mild and heard that it might not even show up on something like that if it is mild! And when they did the clean catch urine sample I was in pain for like a week. I have to go back and see what to do from here. I have no idea what the uro is thinking. All I know is that my bladder does not empty completely and I have no idea what they do for that!!!

    Leave a comment:


  • Thingone
    replied
    Originally posted by Melanie526 View Post
    Thingone

    I'm also waiting on the doctor referral to go to a PT that works on PFD...she said she was going to do something called BIOFEEDBACK, and that should let her know if I have pelvic floor issues...I don't really know that much about biofeedback though...but at this point, I'll do anything...have 2 appointments with PFD specialists at Ohio State (end of July and end of October).
    On my first visit with my PT we first discussed my symptoms. I told her everything, even all the private stuff concerning my not so much sex life. She asked about water intake, and other general questions. I have had 13 surgeries, which were abdominal for endo, 2 ectopic pregnancy, TAH, and one for adhesion removal and cysto for diagnoisi of IC. I have a lot of adhesion's that plague me still. I have probably had IC since I was a kid, but was never informed of this condition until two years ago. When I had my TAH all my organs were glued together. My uterus was higher than normal and my bladder was firmly attached to it. I had my TAH in 1992. I have suffered since. I'm a difficult case. Moving on. She then examined me externally, checking posture, muscle misalignment, etc. Then I was examined internally (vaginally). Several test were done using q-tips and pins to check the muscles around the vulva, and biofeedback. My results were PFD and VV. I have several pelvic floor muscles that are very tight and some are glued with adhesion's and I have problems with scar tissue.

    There are wonderful books about PFD and therapy. My favorite is written by Amy Stein and is called Heal Pelvic Pain. One other tool I have been using to relax is Yoga. Yoga for flexibility and relaxation. I sit at a computer all day. Yikes. The first thing I do when I get home is get out my mat to stretch and release the tension that has accumulated after sitting all day. I also stretch and do breathing exercises throughout my day. Below is a link I found that explains biofeedback.

    http://www.ic-network.com/handbook/biofeedback.html


    I wish you a good pain free day! I hope this helps.

    Leave a comment:


  • loraleena
    replied
    Originally posted by Xylazine View Post
    So in my research, most IC patients have pain when their bladder is full. My excruciating pain comes AFTER I've emptied my bladder. I'm also having to wait about 1-3 minutes before I can empty my bladder and even then, I have to concentrate to finish urinating.

    Anyone have their pain AFTER urinating?
    I just started with this last summer. It got better for several months and now since being in a horrid flare for 2 months it is like this again. It wasn't like taht in the beginning. I just started seeing a new specialist in MA. who only does IC and pelvic floor issues. He rocked by the way. He really suspects that it is pelvic floor dysfunction causing that not IC. He thinks all the pain and discomfort we feel causes us to have all those muscles tense up. He is going to refer me to a pt who specializes in this. I can actually feel the muscles tense down there. I am sure this is what is going on.

    Leave a comment:


  • greeneyes
    replied
    Originally posted by bri1121 View Post
    Yes me too! It really throws me off. As happy as I am that I didn't get up to pee, I hate the pain. You were just diagnosed? How?
    bri1121, (short version) after a 1 1/2 years of no UTI but always a trace of blood in my urine, pain on and off not constant until the last 6 months or so, I was referred to a urologist, had a cystopscope that gave me sever pain, I then called my uro and had to see his partner(mine was on vacation) he's the one that told me all my symptoms were IC related and I received my first instill that day. I just had my first hydro-distention a few weeks ago and only got about 10 days of "almost no pain". The results of the hydro showed "minor cracks" nothing the uro was worried about. So the journey with IC began. I do hope you find relief soon.

    Leave a comment:


  • bri1121
    replied
    Originally posted by greeneyes View Post
    bri1121, If I wake up in the middle of the night and go back to sleep without using the bathroom then It's automatic that the pain doesn't go away for a day or two. My uro added Rapaflo to my meds, it's for bladder neck pain and I've had no pain for 5 days now I'm even sleeping thru the night. I just hope it continues.
    Yes me too! It really throws me off. As happy as I am that I didn't get up to pee, I hate the pain. You were just diagnosed? How?

    Leave a comment:


  • greeneyes
    replied
    Originally posted by bri1121 View Post
    That is exactly how I feel!! I do feel relief from the pressure of a full bladder but then get the stinging weird feeling after. And it tends to be worse when I actually have held it like at night.
    bri1121, If I wake up in the middle of the night and go back to sleep without using the bathroom then It's automatic that the pain doesn't go away for a day or two. My uro added Rapaflo to my meds, it's for bladder neck pain and I've had no pain for 5 days now I'm even sleeping thru the night. I just hope it continues.

    Leave a comment:


  • Melanie526
    replied
    Thingone

    I'm also waiting on the doctor referral to go to a PT that works on PFD...she said she was going to do something called BIOFEEDBACK, and that should let her know if I have pelvic floor issues...I don't really know that much about biofeedback though...but at this point, I'll do anything...have 2 appointments with PFD specialists at Ohio State (end of July and end of October).

    Leave a comment:


  • Melanie526
    replied
    Thingone

    Thank you so much for the info...I met with a urologist today, and he scheduled me for a cystoscopy next week...he told me to find an IC specialist at Ohio State or someplace bigger (wish he knew of one to refer me to...I'm constantly trying to find doctors, and it's not the easiest thing)...he even mentioned bladder removal (which shocked me...I thought this was a last resort thing)...there are several things I haven't tried (Elavil, antihistamines, Elmiron, interstim, etc.), so he really caught me off guard...not the kind of thing I want to hear...I'm going to another urologist on Friday (I'm all about 2nd opinions, 3rd opinions, etc.).

    BTW...How do I sign up for a coaching session? Also...did I read the post correctly? I can call and speak with Jill?

    Leave a comment:


  • bri1121
    replied
    Originally posted by greeneyes View Post
    I have pain afterwards as well ,this is not to say I don't feel a nagging ache before but the stinging, burning sensation has always been after.
    That is exactly how I feel!! I do feel relief from the pressure of a full bladder but then get the stinging weird feeling after. And it tends to be worse when I actually have held it like at night.

    Leave a comment:


  • Thingone
    replied
    Pain

    Melanie526

    I found this post by jill (see below)"


    cnmgrjill
    04-22-2010, 02:36 AM
    Before considering bladder removal, you absolutely should be assessed for pelvic floor dysfunction first by a seasoned professional with experience in diagnosis. Remember the golden rule.. pain before urination that is relieved abit when you empty your bladder is usually bladder wall pain. Pain after urination is usually spasms or PFD.

    Also.. cheereo.. you didn't mention if she had Hunner's Ulcers or not. The new protocol for injecting triamcinolone into the ulcers is VERY promissing!!! Showing a good reduction of pain and discomfort in research studies.

    I'm always happy to go through the various options and strategies before considering surgery with patients. Do it regularly. She can sign up for a coaching session or give me a call!

    Jill


    The golden rule stuck in my head because I was wondering why I have serious problems with the pain after in the mornings or when I get up in the wee hours of the morning. It really makes it hard to sleep. It can take an hour or more for the pain to subside. I'm glad you are going to PT to get evaluated. I'm hoping you get good news and find some relief soon.

    My GYN sent me to PT just for IC, not PFD. I had a lot of problems with my muscles in the pelvic floor that my GYN was not aware of, but she sent me to the right person to evaluate me. My therapist's have been a bright light for me. Relaxation techniques, have helped me tremendously when flaring. I'm so thankful for these wonderful compassionate professionals.

    Leave a comment:


  • healingthoughts
    replied
    I have the exact same symptom. I have more pain AFTER urinating than BEFORE. My bladder always seems to feel better with some urine in it. I always thought this was atypical of IC. But its good to hear that others have this too. Has anyone found any treatment that works for this symptom?

    Leave a comment:

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