Is anyone else bothered by this

[Moad]

Okay my family thinks I'm crazy but does anyone else have trouble with their bladder riding in cars due to the vibration? OR find that certain seats (chairs, couches,etc) or even certain beds irritate your bladder? these are things that REALLY bother me. I have trouble even going on vacations firstly because of the IC and IBS itself and just the stress of it all but sleeping in a bed my bladder is not used to will irritate me everytime. and I find going out to eat or the movies is hard because of the seats. does anyone else have this problem? I'm now wondering just from finding this site and all of you and your stories of what you have experienced and your advise if maybe I have a prolapsed bladder (or prolapsed something anyway) but those who have had a prolapse....have you had problems sitting? I'm now wondering if that could be the reason.

Also THANK YOU everyone who gave me encouragment when I was depressed and having a hard time. depression, IC, IBSeating disorder and so on and so on can feel very lonely. its taken a huge weight off being being able to talk to people who really do understand. Its still been hard but trying not to focus on it as much today. again.... THANK YOU SO MUCH!!!
Melody

[kadi]

Yes, I have trouble with car seats & chairs. I bought two of those IC chair cushions in the ICN shop linked at the top of the page - one for my car, one for my chair at work.

A heating pad under my back or bum helps with discomfort sleeping in bed or a pillow between the knees is helpful.

I do not have any prolapses, but comfortable positions can still be hard to find with IC and pelvic floor dysfunction...

Hope you find some things that work for you:)

[ICNDonna]

I also find that the IC cushions are great for making car rides more comfortable.

Donna

[carly2]

I have this trouble with movie theater seat if they are too firm..also hard kitchen chairs.anything that isn't soft.

[stacym]

I have a lot of trouble riding in a car. I can drive myself for about 15 minutes and still be OK...if someone else drives I can ride for an hour or so...it is very limiting since we used to travel so much but I am finding more and more fun stuff to do closer to home. I know cars that ride smoother can help. I had trouble with the cushion I bought off of this site...my husband bought me one on REI that is inflatable and for some reason it is just perfect for sitting for long periods like in school or in church. Plus it kind of looks cool if a seat cushion can really actually look cool.

Stacy

[meme]

Yep, me too. Car rides are killer. I do okay if I sit in the front of our truck with huge leather seats and I can put my feet up on the glove box. Not the safest, but it gets me where I'm going.

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Yes, yes and yes!

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[JanL]

Yes, car rides are killers for me. My husband got me a converter and I use a heatng pad in the car and that really helps. Our next car will ride smoother (probably an old lady car--LOL) and will have heated seats that get very hot. Sitting in chairs at a 90 degree angle are a killer for me or very hard chairs. I think I may have some prudendal nerve damage and the doctor says that I have vestibula vulvaitis along with the IC. I have become very picky about where I sit and for how long. My recliner helps because I can get to a comfortable angle. I have the cushion and it helps some, but not always a lot. Hope you can find some tips for helping you do better.

Janice

[Bessie]

Car rides are the worst!!

[carly2]

yeah they are bad and i have a nausea problem so car rides only make that problem worse, too.

[Moad]

yes me too.. I get nausious nearly every day. and I get very car sick. and I have IBS and get sick as soon as I eat anything and have to run to the nearest restroom, so I cant eat AT ALL if I'm traveling being that I cant plan where all the rest areas are. so my stomach being empty doesnt help the sick feeling any. so yeah... it pretty my just adds to the horror of getting in a car. needless to say. I dont travel much.

[carly2]

I hear ya. I got so ill just from being in my husbands jeep the other day, my head started hurting along with my bladder and the nausea..omg. I feel nauseous even w/out the car ride and don't know if it is related to the bladder pain or not. If I do eat..well I am having an IBS flare right now. I was doing good for a long time now it's woke up again. Ahhh...the Good Life!....lol

[Moad]

yeah it seems like even if one isnt flaring ONE of the many others are. so there seems to never be any down time. haha it sucks... ALOT! because if I'm not in the bathroom for one thing I'm in there for another. :toilet: I told my husband he might as well put a tv and dvd player in there... maybe even a bed. haha. But what can ya do, except complain a little sometimes. lol! I think we are granted a good complaining session once in a while. as long as we dont let it take over us. easier said than done sometimes. :)

[carly2]

...:) A bed, TV and a dvd in the bathroom..now that's an idea! We'll need a computer in there, too!

I visit the bathroom more than I visit the kitchen. I have a walk-in closet from my bedroom to the bathroom, so I have a straight path right to the bathroom.
Don't even need to turn on a light, I go in so much!

When I have an IBS flare, I really don't want to go to a restaurant.. so stuck at home alot.

[Moad]

haha! How could I forget the computer? LOL! thats deffinately a must. My laptop has saved me from going crazy on days where I have been stuck in the bathroom all day. GREAT invention :) Yeah. The bathroom is then most used room in the house I think ... by me anyway. I'm so tired of being in there I cant stand the color anymore and want to paint. haha!

I dont like going to restraunts much either. either I need the bathroom AT the restraunt which I HATE or I need it on the way home and that is NOT a fun ride home lol! so I do try to avoid it as much as possible

[carly2]

Oh I know about that ride home from the restaurant..:help:
Lol I paint sometimes..nothing professional at all..haha.. but I painted a little picture and put it in my bathroom. I think there needs to be walls knocked down for a bigger bathroom..make it the size of the living room..:)

I am out of Urised and need to call the Uro to ask for Pyridium since Walgreens no longer carries the generic Urised ..at least not in this town. I hate calling Uro office..ugh

[Moad]

I just hate calling doctors period. it gives me anxiety. I just got off the phone from calling 3 doctors. Its such a headache. have the time I dont know what to tell them because I dont even know whats going on so how do I explain it to them? and I have so many issues that some people give me that "your a hypocondriac" look!

Yeah I'm far from a professional with painting also, but really enjoy it. my family is always telling me I should sell them . I'm like "yeah, I dont think so" haha maybe someday, not quite there yet and between the IC and IBS I don't see myself getting out to take lessons. I'm trying to teach myself through Bob Ross videos. its a good stress release anyway.

[carly2]

Oh..yeah, I always feel like when they ask for my name, and i tell the nurse, she probably thinks.."Oh it's HER again" I realize he has other patients but..i still feel like that. In fact, I think I almost feel guilty that I called, crazy as that probably sounds. Do you ever feel that way?

I paint abstract stuff and my husband said, I should sell them. I started laughing. It is good therapy though, I agree.

[Moad]

YES I always feel like I'm being annoying when I call. half the time i think they think we are just crazy and its all in our heads :loco: .and none of the medications work on me or they make me sick so I think they are getting irritated at trying to constantly find something that will work.:hmm: as if I'm not tired of constantly dealing with ALL of this stuff. :bonk:

I need to find a good urologist. I had a really bad experince when I was first diagnosed 9 years ago and have been to affraid to go back. but I think its time as I'm finding more problems. I'm just about possitive I have a prolapsed bladder. if they say I dont I will probably pass out. because what the heck is wanting to come out of me if its not that lol!

[carly2]

Oh my Gosh, I hope you're ok! I wish you lived where I do..I have a very good Uro who is caring. He does believe in IC ,he is very gentle and he even slept at the hospital for 2 nights when I had a close call after a ureter repair surgery.
It's his staff that is hard to deal with. he has told me i could call and talk to him anytime..yeah, I'd like to see THAT day! I just called and no one answered.

It definitly sounds like you need a new better Uro..I hope you find one. Who is taking care of you now, if you don't mind me asking?

[Moad]

Right now all I have is my Gyn. doctor who is great but she doesnt know alot about IC shes only offered me Elmiron never anything else so I assumed there was nothing else. I dont have a GP she left her practice so i have been out of one for about 4 years now. and I just started seeing a Psychiatrist for depression and an eating disorder. but I'm not to sure I'm all that happy with himeither so I think I will be changing to someone my friend found who is through a church. other than that I have no one. I have had to learn on my own what to avoid and what flares my IC. I have learned ALOT just finding this site. but I am also realizing from this site that I NEED a good urologist. Its been a rough 9 years. I've come ALONG way. this stupid disease just about ruimed my marriage. thank God we both got our heads together and couldnt be happier now. but its a hard thing to deal with priod but when you dont know what your doing it can really suck!

Thats awesome that your Dr. stayed at the hospital with you. sounds like you have a really good doctor. The guy I had was more interested in making me feel crazy and like I was faking it.. I dont know for attention maybe. YEAH he did an exam on me an saw that my urethra was really enflamed and still treated me like I was exagerating. then when I had my Cystoscopy and the bag was filled with urine that looked like hawaaiian punch he STILL said well.. you have a very mild case.. kind of a condescending kinda way. and the horror goes on and on. but basicly thats why I never went back. to affraid of being treated like I needed to be locked up or something. but I'm educated more now and can put my foot down. lol! so I think Its time

[carly2]

Yeah It is time for you to see about a good, caring Urologist. You don't live in IL, or i would have you see mine. He keeps up on things and probably knows alot of docs. I don't know about Oregon..you never know. If you ever want to write to him, I can give you his address sometime.
I see a Psychiatrist too..it helps and I have so much anxiety..which can't help with IC.
You have done pretty good to manage 9 yrs but ..you shouldn't have to stand on your own anymore...:)

[Moad]

Yeah maybe I will write him if I cant find a good one here. just to ask questions. My gyn is really good with what she does so I'm going to ask her for a refferal. maybe I'll have better luck that way. I'm finding out that there are lots of medcations I could atleast try but didnt know they existed. so it very mucg time. especially as it's gotten worse in the way that I have had some incontinence lately. would LOVE to put a stop to that if at all posssible. not something I was wanting to deal with at 32 years old. but.. I guess thats a part of our lives. constantly having to adjust our lives to deal with our issues.
I hear ya on the anxiety thing... as if it wasnt bad enough that and the depression without the IC . but talking does really help. just have to find the right person to talk to.

[carly2]

Oh, if you really like your Gyne, then she could probably find you a doc that you like. That's good. is she supportive of you with the IC?
i know my Mom had a bad experience with a Uro a long time ago. I must have lucked out with mine. The only thing is that his staff could go and it wouldn't bother me.

I bet you have seen alot on this site that might help.. I knew about some meds already but this is a good learning site and supportive.
I find it a little unnerving that we not only have IC but a list of other problems that seem to all go together with IC.

[Moad]

Yeah she is supportive but doesnt seem to know a whole lot about IC. and all the staff are actually really nice. the nurses are great. Just hope I have the same luck when I go to find a urologist .

I have learned TONS from this site. and have met some great people. its been really nice talking to people who are going through the same things. My husband is trying to understand and be supportive and I best friend is amazing but not quite the same as talking with people who actually know what your going through. especially that LIST of problems that we all seem to share. its hard for people to understand that your not just a Hypochondriac. that you really do have a list a legitimate problems. I would have never guessed that all (or most) of my problems tied in with my IC. or that so many others would have so many of them too. it is a little unnerving!

[julie grace]

Hi im new to this forum, but I've had IC in varying degrees of severity for 20 years or so. When I first got it I was working in a stage show, as i said on another forum thread. I used to get so anxious waiting to go on stage that i would go to the loo heaps of times.. Maybe this triggered it but i became so anxious about it that i went to the doctors for it... cos we had to travel and share rooms e.t.c and as any of you will probably know all these things are stressfull things for IC sufferers. Back then the doctors didn't seem to have a diagnosis for me, and it never seemed to have a name. they treated me for cystitus even though i had no infection. After a few months of antibiotics a doctor prescribed a 'bladder stretch'... as i was diagnosed with 'Small bladder' ! They put me to sleep and stretched my bladder with water. Afterwards I was sent home. I was left with a bladder that wounded even though i was busting i couldn't make my bladder muscles to function and couldn't pee.I was in agony. My flatmates marched me off on the tubes (This was in London) to the closest emergency hospital clinic. They gave me a suppository to help me go. Back home, i continued to be in agony, needing to go every ten minutes. I was due to travel to germany, which i did by ship and train, and on route I noticed i was pissing blood. I went to doctors in Germany. It seemed i had cystitus for real. but also after looking inside my baldder ther was scarring and ulceration, red inflamed bladder wall. They tried to treat me with drugs, both taken orally and injected straight into the bladder wall. After each treatment my bladder felt completely wounded and i could feel my footsteps. I could also feel the vibrations and bumps in the road when driving in a car... They wanted to send me to a bladder specialist, and give me cautisone treatment. They told me my bladder was in spasm, and that if i didn't get treatment it would stop working alltogether and i would need to have it removed and have an external urine bag. (sorry i've forgotten all the technical terms). But I was so tired of the treatment that i refused to go on with it. To this day i believe i made the right choice. I still suffer from IC but my symptoms have deminished from 'unbearable i want to die' to maneagable bouts. I realize today i made some mistakes way back then, i tried to control it by reducing fluid intake...big no no! I also panicked like hell! also a big no no. I've found the best thing i can do is to keep drinking, ...water, vege soups,...wahtever you can tolerate. Up your vege intake, it helps keep body alkaline. And best of all notice the 'mental/emotional' symptoms that come with the IC and work on reversing these..I believe that has been my best tool towards beating IC. Even when suffering an IC bout, calm yourself down and tell yourself that it will pass and that all will be ok. Recently i have gone to a homeopath, he has prescribed me a remedy for 'Stagefright'. sounds whack but remember thats where it all started for me. For you it may be different, but i think anxiety and IC go hand in hand.. afterall, who doesn't feel anxious when busting for the loo? especially if you're at the films on your first date and you've already been twice! You all know what i mean! The Homeopath also advised me to take a herb 'Slippery Elm'. Its to soothe the inflammation of the mucous linings of the bodies inner organs... such as the bladder. Look it up... might be good for you all too. Good luck.

[carly2]

Thank you Julie Grace for the tips and your story. I will check into the slippery elm. I have Generalised Anxiety disorder..( GAD) and it doesn't help. I can't eat lots of vegs due to IBS but I do take magnesium, which someone here said reduces acid.

...:)

[julie grace]

Hi Carly2, I don't have IBS thankfully. Apart from IC I am relatively well. I feel I have come a long way from those early years. I used to have such severe symptoms of IC, which made my life seem unbearable. An endless trek to the bathroom or seeking out toilets when out. I was living in London, and then Germany at the time, had one year of treatment which didn't help, but only seemed to aggravate. After rejecting medical help i did go to naturopaths and acupuncture but I didn't have enough money to keep up with any treatment for long. Actually at the time I found the acupuncture to be the most helpfull. The acupuncturist I went to treated me with warm clay packs. It was the most comforting treatment. And over the years I have often used a hot water bottle on my abdomen.. or directly on the bladder area. The warmth seems to help me bear the bladder spasms/ sensations. Especially usefull at night if IC is keeping me awake. At that time the naturopath prescribed me an anti-candida diet.. which is yeast free and sugar free. Its hard to say what exactly helped back then when my symptoms were more severe...I honestly felt like a cripple..it put me off travel. Returning to N.Z was good for me... My home country, less stress. I had a baby, and that seemed to help too..maybe the distraction was good for me. But by and by after reading information on IC i became more understanding of the sickness.. But too I decided it controlled me too much...that i was living in fear of it. wouldn't do this or that because of it, which is understandable. I also realized I was waiting for it to go before I got on with my life. And of corse I started to concede that it may never go. As i had failed to eradicate the physical symptoms, i wanted to learn to embrace life despite it. I reasoned that if stress can trigger it, then learning to detress should theoretically deminish severity of symptoms. I also have been to a gynacologist who prescribed drinking endless amounts of water, and practicing holding off from going to the loo till absolutely bursting. Believe me this treatment had me housebound but i did for a while and i'm sure it helped. I have done yoga, meditation, used deep breathing to calm myself down when suffering an IC attack. Sometimes I have sat on that busting feeling for over 2 hours untill i absolutely must go! (Other times can only seem to manage 10 mins if symptoms severe.) But because it's been my problem for 20 years i guess I've just accepted it more and I know that even though I'm in discomfit, i am still in controll, and I can handle it and that it will pass. With all the stuff I have tried in order to get better I couldn't say what has actually helped the most. But I think letting go the anxiety and fear of the IC was a big turning point. All I know is that today my IC bouts don't last as long and are not as severe, partly because when I do get a reaction to something I drink or whatever I handle it better. I 've found that eating something salty helps an IC attack to pass by quicker...salt helps the body to absorb fluid. Today I make sure I drink water first thing, then I allow myself 1 cup of tea because I know I can tolerate it. 2 cups and my bladders having fielday sending me to the loo every half hour. later in the day I can handle 1 more cup of tea or coffee and thats it. After that i stick to water or some other drink like caro (coffee substitute) or green tea or peppermint. Sometimes I can tolerate juice. But never more than one irritant at a time, i.e. never juice and tea. also some herbal teas are shockers! esp. chamomile
Yes I have heard that magnesium helps. A mineral supplement was recommended to me recently. I am yet to try it but I will. anyway better stop going on. best of luck

[born2swim]

Yes! Riding in cars or anything causing a vibration gives me trouble. Since my hydro, car trips are not as bad. I don't notice a difference with seats, but lying in bed in certain positions seems to put pressure on my bladder than other ways.

You are not crazy!

[IC_Robin]

I only notice it in pick-up trucks, I guess because they have stiffer suspension so they shake and rattle more.

One thing that helps me on a car/truck ride is to tighten my gluteus muscles and kind of position my butt cheeks on the car seat so they are pushed together as much as possible. Tightening the butt muscles causes me to sit a half inch taller in the seat. Keeping them tight and together for the whole trip takes a lot of concentration but its worth it.
I don't know why tightening and pushing-together the glutes helps, maybe it works like the IC pillows, reducing pressure on the perineum by lifting the pelvis off the seat. Or maybe tightening the glutes helps support the pelvic organs against decending/rubbing/vibrating. Or maybe some of my tailbone connective tissue is loose, so bracing the area with my glutes compensates for the looseness.

Before I discovered butt-tightened-sitting, I used fight the pain by riding in trucks with half my butt lifted off the seat.

Thanks for bringing up this topic! I hope you feel better.:)