What is it that makes you feel like you have to pee

[IWin]

I posted this under "symptoms" but moved it here...in case anyone has any input. Thanks!

Pelvic Floor Dysfunction
I've got a question about the symptoms of PFD.

On urodynamics my stream started, stopped then started again and I was only able to pee out about 1/2 of what was in my bladder. He poked around against some muscles and said they were tight and based on history, etc said he thinks I have some PFD along with my IC.

I asked him if the reason I always feel like I have to go is because there is always urine in my bladder along with my IC bladder not always liking a lot of urine. He said yes. So far, so good.

What I didn't ask him, but will when I see him again, is what I'd just like your input on. Are these muscles in spasms? Is it the spasm that gives me the feeling of needing to pee, whether there is any urine retained or not?

I am so confused. I am doing everything I am supposed to be doing (well, as best I can). Even when things don't improve, just understanding what is going on helps me.

Thanks for your takes/knowledge on this!

[MakinIT]

Hi IWIN

Okay...I'm not a doc but I'll try to explain what I understand. Your bladder is a muscle. Pretty simple organ. When you have IC, your bladder wants to freak out about just about everything. When you throw PFD into it, (My problem, along with most women with IC) when your Pelvic floor tightens, your bladder also tightens as it is a muscle. Hence, it begins to spasm because you have other problems with the bladder..whatever is causing your IC symptoms. Then, ya gotta pee all the time.

So..your job (should you choose to accept it..sorry, I'm a little wierd) is to learn how to relax the Pelvic Floor. T'ain't much fun, but can be done. I have learned this way....A) Physical therapy. A specially trained therapist physically manipulates those muscles and gives you exercises to work on to learn to relax. Unless you really want to know, I won't go into details about this. B) More PT only now they've thrown in Yoga, Tai chi and just plain endurance training. (to increase my stamina so I can reduce my sleeping from 18 hours a day to 14) C) stick to the program D) I go to a counselor to help me cope, and has taught me visualizations (Yeah, yeah, we freaky Northwesterners and our cosmic trips!) E) VALIUM...Something to relax the bladder. I take 5 mgs 3 times a day. don't know if you need something like that. thats between you and your doc, but if it's keeping you up at night and you hurt all the time, may be a consideration. ( I also take morphine, but thats more for the pelvic pain)F) Hydroxizine or some anti histimine if your IC is caused by increased mast cells. You should know that from if you had a biopsy when you had your cytoscopy.

Phew...I do a lot of stuff....wow. No wonder I don't feel like I'm on disability. I running crazy from doc to doc.

Anyway...hope that helps..Y'all should ask your doc to try to send you to a PT who is trained in Pelvic Floor Dysfunction. Ask if you are curious.....Don't ask if you don't want to know. :eek:

Good luck to you

Tracey

[MakinIT]

sorry i forgot to add...I always retain a little urine...however, never push the pee (or BM) out when you go, it just worsens the Pelvic Floor symptoms....You may or may not retain urine. Usually, they have you go pee then check with an ultra sound.....

I hope I didn't talk your ear off!!!!!!

[Dixiefireball]

i also have PFD i agree with alot of makin its thoughts on pfd. she is right in may ways My doctor clearly states not to push to try to get the urine to come out but i can't help it the only way i can get urine to come out without putting pressure is to use a cath. :( i hope things get better for you soon
sending you hugs and prayers
Rhonda

[littlebear]

Hi Rhonda, I'm wondering about your post. I'm the same way, I can only go if I push. What does the Dr. say will happen if you keep pushing? Also, what has your Dr. prescribed for you to do about this. I've had biofeedback for PFD and done exercises for strengthening the pelvic floor muscles (but no relaxation exercises). Best wishes, little bear

[Dixiefireball]

littlebear i take klonopins to help relax my musles so hopefully i don't have to push so hard to get it to come out this is a little embrassing but i also have to stand up a little bit to get the urine to come out i can't completely sit down. i also cath my self becasue i take the heparin and marcaine dmso treatments and that helps alot to get the ex urine out also. my doctor just says its not good for me to push and try not to but heck i can't get it out anyother way i have to push.
i know it can cause more damage and if i push to hard it will make me flare also.
in the pass i have taking Ditropan xl but when i did some research on it it had on there website something about if you have either bladder or kidney problems and if you took this normally it could cause you to have a uti. you can look at there website to find the right information on this it been a while since i looked at it but it was something like that.
so truly i havent really done much about it i have had my uritha (sp?) steached a couple of times and it helped some but other then that nothing new has happen.
He talked about having phy therpy but that hasnt happen yet. :(
sending you hugs and prayers
Rhonda

[littlebear]

Thanks so much, Rhonda. I didn't know about klonopins (although I do know about standing up a little!) You are so very helpful! Thanks again for everything. Best wishes, little bear

[Dixiefireball]

thank you littlebear for your kind words that help make my day.
Rhonda

[Dixiefireball]

oh sorry almost forgot klonopins is a nerve pill that helps with bladder spasm for me it helps relax my bladder some but mostly used for anxiety and nerve problems. klonopins my doctor told me to take it with my pain medicine also it helps keeps my pain medicine in my system longer.

[littlebear]

Thanks so much Rhonda. You are wonderful (and you've made my day more than once yourself!). Sending you all my best wishes, little bear

[MakinIT]

so...I win...how ya doing? Are you overwhelmed by the info or do you know this stuff already?:) It sucks but, here we are...My life has been turned upside down for a year now, my husband and I finally were "romantic" last night after 14 months.....so there is hope (uh..not that sex was my end all goal, but it was sure a nice little bonus to throw into the hard work)

Let us know...I hate to hear of folks being confused...it is confusing, frustrating, and scary and it's ok to share those feelings here. That's what I've learned!!! Everyone on here has different experiences both physically and emotionally. I'm at at a good point emotionally right now, but I do hurt. I've learned that I have to deal with some of this and it won't kill me!! However, I am medicated heavily for pain relief so that helps, but I still feel pain.

Just keep researching. You have a question, ask it here or go to the web...lots of research out there, my friend!!!

Tracey

[Dixiefireball]

Tracey you are so right about the boards we all are here to try to help.
I win i do hope you are doing better.
Tracey i'm glad you posted today after your post yesterday i was really worried about you.
sending you all hugs and prayers
Rhonda

Tracey please email me.

[MakinIT]

I'm sorry..I've written so much and been on such a roller coaster of pain and emotion...which post are you talking about from yesterday. I looked back and didn't see much in the way of the deep dark doldrums I've had although I have written lately that I've started getting sad and down in the dumps..I just don't know where it is....Maybe the e-mail I sent you? did you ever get it?


BTW: I had a BIG breakthrough at my counseling appointment yesterday and I am somewhat relieved. Sorta figured out where my anger was coming from (ok, duh, despite the pain and frustration of having my life turned upside down) But we started talking about when I had Guillianne Barre Syndrome in my early 20's (a nasty paralyzing disease, I was hospitalized for 6 mos and spend another being rehabilitated, learning to walk, talk, dress, eat, shower, etc..) and I realized I'm kind of in the same boat again (much less helpless) but dependent on a husband for emotional and monetary support that I feel like a child again. I'm an adult with a Master's Degree, yet I'm as helpless as a little kid...So, I think, going back to school to learn about consulting with other teachers with visually impaired kids is a good move, cause I can't go back to what Iwas doing. That was emphasized tome again the other day at the docs.

Anyway...thanks for listening...and everyone else who read the message:)

Tracey

[blueangel]

Hi Tracey I just read your posts and I can only say I am sorry that you had that happen at such a young age and now this but thankfully you have the boards to vent and talk and I wish I could take it all away for you. Sending lots of hugs. Tara

[MakinIT]

thanks BlueAngel"

it's just something I've learned to deal with. Feel like I'm standing over a batting plate with bad pitches coming at me all time...and everyone of the damn things hits me....but, It is my pain, they are my experiences, I own them, I have to deal with it. :)

I hope not to sound too much like a whiner...I reallydon't..it's taken 8 weeks for the therapist to get me to talk to him about much more than my day to day life.

Thanks...tracey

[blueangel]

You do not sound like a whiner at all. I think it is great that you are talking to your therapist and it does not matter how long it takes to get you talking as long as you do there is progress being made. I am in therapy also and it has taken a long time for me to open up and share my thoughts also. Keep up all the hard but good work.

[MakinIT]

Well BlueAngel, looks like you have some things lined up....the counseling I'm just beginning to get used to. Hard to just tell someone you don't know very well all your thoughts. But, however...I'm starting to get over that. I sorta "barfed" out a bunch of stuff last time. Then looked at him and said, "wow, this must be why you are a therapist".....He just laughed. Then continued probing, and probing, and probing..........Geez.

Tracey

[IWin]

Thank you Rhonda and Tracy for checking on me.

I'm having some trouble with the new boards. I click on new posts, but then when I come back there is another whole set of new posts, and I can't find those I read and wanted to respond to. Something new I have to get used to.

You have both been through so much at such young ages, I feel like I'm whining about nothing. To see how you cope gives me strength.

I'm doing 2 mg Valium 3X a day, two hot baths a day, no straining (trying) and no constipation (not a problem for me). It's been about a month and I see no real difference. I have a million questions for the doctor when I go back.

Thanks for your caring and support.

[IWin]

I'm sorry I spelled your name wrong, Tracey.

[MakinIT]

That's ok...everyone spells my name wrong...like I said in post somewhere, Ihad todeal with that truama my whole life:lmao:

In terms of pain relief: take what you need, but if you can avoid opiods do...I only say that because for me, the constipation gets to be a major drag. However, if you need it, take it...just take something daily for fiber plus high fiber food, if you can tolerate it. I also take colasce (a stool softner) and it doesn't do much for me:( . Just a daily battle.

I hope you continue to feel ok. Remember it is a battle of ups anddowns. I can feel relatively good and like ca-ca the next. (Today is an example, I hurt so bad I think something else is going on...maybe I pulled and tore an adhesion from a surgery...waiting for the surgeon to call back...and only cause I was showing off my flexibility from Yoga to my family by doing a backbend...which I've never done!!! DAMN.)

The best to you....keep us posted....If you continue tohave more down days than up, ask your doc to refer you to a counselor who specializes in pain management. He sure helps me, even when I;m a major grump. I also have other good people on my team....I get very frustrated with them, but they are people and doing the best they can....I can't imagine the call back lists they must have to deal with. My uro is incredibly wonderful about that, and she spends all the time I need to talk to her, without making me feel like I'm being a pain in the ass.

Good luck....Tracey

[icnmgrjill]

Tracey & all..
.
First of all, I think your postings and responses here are quite lovely. I can't add much more except that having a daily plan of relaxation and sticking to it is CRITICAL... IMHO.

Tracey.. you brought up an excellent point.. anger! I was 32, with my Masters Degree when my IC started. I was soooo angry at myself.... that I actually wouldn't go out to dinner with my family. I didn't feel that I "deserved" it. I went from being on top of the world to the bottom.. and it was HARD on my emotions. Throw in getting laid off, losing my health insurance, losing my boyfriend and, well, let's just say that it was a learning experience.

I'm very big on having a daily anger management plan too. I wrote in a journal every morning and/or evening... I walked when I could... and I cried in the shower when I just need to let it out. I read affirmations. I loved listening to inspiration audiotapes, especially Norman Vincent Peale.

It was really about "letting the emotions" out of my body where they were swirling around in confusion. By giving them a voice, it helped me get through the day. By writing in my journal first thing in the morning, it was like I purged my worries and angers for the day and it sure gave me a much better outlook on the day. And, yes, having a counselor to talk can be soo important too. Someone neutral, skilled and who had great suggestions.

Jill

[MakinIT]

Jill:

Can't agree with you more about the journal. I do it religiously because sometimes there isn't anyone to talk with, everyone I know is bored with the subject and has moved on in their lives. I'm sort of left observing on the back deck with my nose pressed to the glass while I watch everyone else do their thing.

The journal allowed me to talk to someone, yes, myself (been known to do that from time to time anyway) but in that process, I sort out how I feel. Even if you hate to write, do this for yourselves and you'll start looking back and re-reading your entries and realize there are good days..(especially when feel lousy) It gives you a reminder that things will get better...again. I think journaling kept me from "offing" myself the first few months.

If you buy a pretty journal from a store with a wide selection, (Look for the one that calls to you) then you'll be more likely to use it. As a bonus, it is a good tool to take to the doctor or SS (if that need arises).

Thanks again. Gotta go...:dogrun:
BTW Jill: I love these smiliess....

[ICchell]

Omigosh!! You are so funny!!!! I was reading this Topic on Pelvic Floor Dys.,cuz I think thats probably what I have too .The way you descibed everything was just too darn funny:D :biglaugh: :lmao:
Michelle