I am just wondering if anyone suffers from bladder issues? After dealing with some bladder pain and pressure we thought was IC my Urologist has found my bladder is not emptying like it should be. After a couple of tests he is finding no apparent reason why. We talked about my Chiari and he does want to talk with my Neurologist. Just wondering if anyone else has had this issue and what you may have done?
I also have this problem and keep getting told that is medication related. I am newly diagnosed with CM and don't have my first Neuro appt until april but I am definitely going to add this to my list of symptoms now that I see someone else also is experiencing this same problem.
I had trouble not being able to hold urine. When I had to go I had to go. Wore pads! This problem has lessened a great deal since surgery.
I also have Chiari and have had bladder issues, kidney infections & trouble with water retention. Had a bladder repair a year ago and it helped some. I had the Chiari decompression surgery 2 weeks ago and have not had any issues with my bladder since. Complete emptying and no water retention. I believe that my bladder issues were related to the compression on my spinal cord from the Chiari malformation.
I have UTI’s constantly, extreme back pain on my left side and have to get up every 2 hours during the night. It seems as though no one knows what is causing this problem. I’m seeing a neurologist but he has not been able to dignose what is causing this. I know that Chiari does affect the bladder, but one would think that there would be some answers and treatment.
Hope you get help soon.
Thanks for all of your input! Its nice to connect with people who have your same issues. I have by far learned way more about Chiari from these support groups than anywhere else!! Hope you all can enjoy a symptom free day!
I have also had those problems for years...the result was weakening muscles as a result of the illness...it also effects my bowels just the same
Yes to the bladder issues
Urge incontinence before surgery which resolved after surgery though I also had to do some exercises to regulate the tone in the surrounding musculature (also helped that back pain!) I now have a very weak pelvic floor so have incontinence from stress. I have located a pelvic floor specialist who is a physical therapist and plan on visiting her when other things are sorted out. I have had incontinence issues for twenty years so a little bit more time won't hurt!
There are some good books on the subject of incontinence that can help with lifestyle changes to help with incontinence but I would see a specialist who can do an external and internal exam of your plumbing to help you out.
Good luck with the flow troubles!
Hello,
talking about bladder issues, my big problem is "going potty" (sorry, for kids terms, but it stuck with me after having kids:) too often. I was fine as teenager but as soon as I started having Chiari symptoms...intense back headaches, nausea....and so on locating bathroom about every 20 minutes is a thing to do.That's became "norm", something I used to and now take for granted. On many websites, they include frequent urination as symptom of Chiari. I also have periods with frequent UTIs or something that feels like UTI but when I run to urgent care they say NO infection found even though I feel pain and cramps similar to UTI. And of course I do regular GYN exams and such and all is in clear...Pain comes and go but frequent urination stuck with me for ...15 years already. Going from frequent urination being official symptom of Chiari and also migraines (my neurologist told me) I can absolutely see connection to any other bladder issues.
All the best,
Ada said:
Hello,
talking about bladder issues, my big problem is "going potty" (sorry, for kids terms, but it stuck with me after having kids:) too often. I was fine as teenager but as soon as I started having Chiari symptoms...intense back headaches, nausea....and so on locating bathroom about every 20 minutes is a thing to do.That's became "norm", something I used to and now take for granted. On many websites, they include frequent urination as symptom of Chiari. I also have periods with frequent UTIs or something that feels like UTI but when I run to urgent care they say NO infection found even though I feel pain and cramps similar to UTI. And of course I do regular GYN exams and such and all is in clear...Pain comes and go but frequent urination stuck with me for ...15 years already. Going from frequent urination being official symptom of Chiari and also migraines (my neurologist told me) I can absolutely see connection to any other bladder issues.
All the best,
I too have delt with bladder pain and pressure for years and would run to my MD thinking I had a bladder infection but no infection would show up on test. Then because of all of the pain and constant pressure we were thinking interstistal cystitis but there is no way to diagnose that other than symptoms. Currently my bladde r symptoms are calm but this issue tends to come and go for me. I have been thinking for quite sometime that this and the IBS I deal with are Chiari related.
STOP DRINKING CAFFEINE COFFEE ALTOGETHER. SWITH TO DECA F. AT RESTAURANTS ETC. YOU MUST TELL THE WAITRESS YOU WANT DECAF. I though that my frequent urinating was from cancer or chiari.
DECAF COFFEED REDUCED URINATING A LOT.
BOB
Hello! Nice to meet you. I have also experienced bladder issues. I did not associate it with Chari1 until now, but I have not ruled it out as a symptom. I was in an occupation where I was required to hold urine for long periods of time. Sometimes 12 hours or greater regularly over a time period of 3/4 of a year. On top of that it was under extreme environmental conditions where it was necessary to consume large quantities of water (mineral water) This resulted in bladder spasms and incontinence. I attributed it to bladder injury due to the conditions we were under. I do not know if chiari can give a predisposition to my type of bladder issue or if it presents differently. Child birth and age can have effects on the bladder that can become worse over time. But I can say that I am middle aged with no children so it can be ruled out as a cause in my case. I don’t know how much my information really helps you any, But I do think it is reasonable to consider chiari as much as anything else. There are specific nerve paths that run out from the spine that do affect bladder and bowel control. Arthritis and other back problems can present with bladder and bowel issues as well as many other things, so although chiari maybe a cause or a contributor it’s one of those things that has to be evaluated based upon the sum of your complete health and is best to have worked up because a lot of the causes of bladder symptoms do have possible treatments. It’s a shame that so many of us still have to fight with the doctors to have chiari1 considered when we are being evaluated but the sad fact is more providers blow it off then don’t, so I feel your pain there. All I can say is if you feel strongly that it couldn’t be anything else and it is your chiari1 then stick to your guns and know you have some support here. In my case it got better but I have chronic residual effects and if I experience the urge to go, I have to do so right away or wind up right back where I was. I don’t know If it’s coincidence or if chiari1 is a contributor I just work my life around the new normal… No matter what is causing your symptom I do feel you are making a reasonable inquire and can empathize with the problem you are experiencing and might have suggestions on ways to cope with the symptoms and hopefully minimize the impact it has on your daily life until you can get some answers. Please keep us updated and sorry if I’m a bit exceedly verbose I mean no offense. Writing is an unfortunate weak area of mine. Hugs! Kris
My problems with "going potty" a lot started back into law school days (when my headaches started) and when as a college student I could hardly afford basic meals not talking about buying fancy things like coffee. My blood pressure is 90/60. I have to have my morning coffee. And when I don't drink coffee at all, I don't see any difference (how often I got to restroom). The more headaches I have the more often I go. This issue is official symptom for migraines and Chiari. Sure, coffee might have some effect but doesn't seam to me, personally, as much as pressure in my head. Also, it could be different with men and women I suspect.
Robert Fay said:
STOP DRINKING CAFFEINE COFFEE ALTOGETHER. SWITH TO DECA F. AT RESTAURANTS ETC. YOU MUST TELL THE WAITRESS YOU WANT DECAF. I though that my frequent urinating was from cancer or chiari.
DECAF COFFEED REDUCED URINATING A LOT.
BOB
I also have bladder problems. When I hafta go, I hafta go and can hold it only about 5-10 minutes. I wear pads too. I haven’t had any accidents, but I’ve come close.
I will admit that I’m a pop-drinker, so that doesn’t help. But you’re not alone!!!
Hi,
I also had this problem which including burning and pain in my pelvic region. My OB/GYN diagnosed me with interstitial cystitis and said it could be related to the Chiari because it has to do with the nerves and muscles down in your bladder area. There is a specific diet they recommend that you eat and although I was skeptical, I tried it and it helped a lot. There was also a medication for IC they gave me that helped quite a bit. After a few years the symptoms mainly went away except that I do still go to the bathroom quite often! It's not as bad so I no longer take the medicine but do try to follow the diet. It might be worth double checking that IC is not what is causing your issues. I remember my doctor talking about the bladder not fully emptying as a symptom of IC. Just a thought.