QUIX - Incontinence - sensitive topic

[addicted2harleys]

Quix - In reference to the incontinence....first off I went back and read the Health Pages on sexuality and incontinence.  I am having some embarrassing issues and I thought maybe I could get some guidance from you.  And, no, I haven't really discussed the "whole" problem with my PCP.

My problem....here goes....

1.  I wet the bed twice.  Also I get the urge to go pee, it comes on out if nowhere very quickly and I cannot hold it, which makes me not get to toilet in time.

I did talk to PCP about this and he prescribed the Oxybutinin ER.  This seemed to do the trick.  But, it made me constipated, I think, so I now take stool softeners every night.  

2.  I can't seem to "push" when I have a bowel movement.  It is like that muscle is gone.  I have to wait until my body can release it on its own.  Does that make sense?  I do have a bowel movement most every morning.  Sometimes during the day time and the night time, I "leak" a little...most of the time I don't even know it happened.

I have not discussed this with my PCP.  Actually this is the first time I have mentioned it to anyone.

3.  Sexuality.  I have no sex life anymore.  But, I do know that for the last couple of years I have had problems with vaginal dryness, can't seem to achieve orgasm

Again, I have not discussed this with PCP or anyone else.

4.  New sensation.  Started yesterday afternoon.  A pressure-like very intense pain down in my vaginal/anus area.  This sensation put me in the fetal position and took me to the ER.  This pain is hard for me to explain.  I have never felt it before and I wasn't able to find relief for it myself.  It stayed at a level of 8, but would come in wave-like periods of level 10.  It seemed to provoke my "regular" nerve pain into action and made it increase.

Could all of these issues be tied together?  Can you explain to me what is possibly going on with me?  If so, can you guide me in the right direction to get help with this?

Wow.  I just looked at what they gave me in the ER.  Morphine in my IV.  I gram, it looks like.  I guess this is why my mom had to pull over twice on the way home so I could puke.  

And my neuro is pushing for me to have IV Ig.  Do you have an opinion on that?

Thanks for your help, Quix....and for anyone else who may help me understand this....

Addi - tired of the pain and the poking of needles

[SarahL2491]

ok, couldn't resist joining in.......going to make you all laugh and show you nurses don't dwell on caths, so don't worry about us showing you how.  I had to cath a lady in our ER who was very, very difficult, had a tiny opening and she was a bit heavy.  You have to picture this in your minds to appreciate the humor.  Three nurses had tried and gave up.  I wound up getting her relief by sitting on the floor beside her stretcher, using a tiny cath  and she sat on the side of the bed with one leg up..........hey, its all in positioning, right quix?  I still smile sometimes thinking about that........I got to be good at 2 things, caths and IV's......

now, quix, can you get estrogen cream OTC?

I get the severe undercarriage pain and take my colace every other day.  fresh squeezed orange juice seems to help with natural pulp in it.  We wound up buying a juicing machine to add apples and grapes and watermelon to my menu.........

whats the big O?  have forgotten, ha ha, no sensation there for sure........

love this thread, people have really shared things we knew about but were timit to talk about and I agree, my hubby doesn't want to talk about MS, just puts his head in the sand

Sarah

[addicted2harleys]

Bump

[jensequitur]

Phew!  It looks like I got the grab bag.  I have had all of these problems, though fortunately none of them stuck around long enough to talk to the neuro.

Lack of mobility, also loss of control of the sphincter.  I'm not sure which is worse - needing to go and not being able to hold it, or needing to go and nothing comes out.  

Same problems with the bladder - need to go, and can't hold it in very well.  Or need to go, and can't - I finally relax my bladder enough to go, and I get a big ol' cramp.

I've also had on again, off again spasms of the pelvic area.  I had a bout a couple of weeks ago that I imagined was similar to childbirth (I've never had a kid.)  Sometimes it feels like the bladder is spasming, and sometimes it's the vagina.  And sometimes it's around the anus.  

So I've been paying attention to the chatter.  I feel very lucky that I haven't had the kinds of serious problems that you guys have... and wondering if my luck will hold out.

[addicted2harleys]

I think I would need a little more description of your pain to know if it was similar.  I do know that I was awake when mine started.  And moving did nothing to alleviate mine.  I tried several positions with no relief until I finally ended up in the fetal position, which I stayed in until the morphine was given...several hours later.

My pain came in waves, similar to childbirth contractions...but not in my belly and to me worse than childbirth...it was centralized in what seemed to be the "in between area".  I always thought childbirth pain topped anything....until now.

I have never had peach ice cream before!  That sounds really good!  I want a double serving, please.....and I LOVE cheesecake!

I will supply the party favors.  You can most definitely have the double dose of morphine.  lol  I was fine with it...as long as I didn't move.  Literally.  Not even a nano-twitch.  Then nausea would hit me like (snap) that.  ;0/

Hugs,
Addi

Tired - you are absolutely right....bathroom issues are miserable no matter what kind they are.

[Csativa]

To johnnymutt,

I had to self cath for for awhile back following spinal surgery complications.  Doctor first ordered it while I was still in the hospital and I nearly &^%$ when he said it.  I had heard so much about the dreaded procedure (and what I thought I knew came from horror stories told by men).  Anyway, it did not hurt, and neither did self cathing' at home.  At this point, if I needed to, I would not hesitate to do it again.  I can't think of anything more frustrating and uncomfortable than having to pee and not be able to.  Cant hurt to talk to the doc.

[Tiredofbeingnumb]

Quix--thanks for all of your info! That is interesting when you were describing your cathing experience, that is what happened to me! It wouldn't hurt so much "going up", but it would hurt like anything coming out--I love your pinecone description! Also, the cathether would be pink with blood, which my urologist said was normal, in that the urethra was a mucosal surface. Which I am not entirely convinced of, and certainly pain isn't normal! My problem was, on the times that I could insert it (more often I couldn't), and after I took it out, it was then painful to urinate for the rest of the day. As with all of my issues, I left a message with the medical assistant to tell the dr my issues, that after I cath, it hurts for the rest of the day. Did I get a call back from the dr? NO! Just a script for antibiotics because she thought I had a UTI. Correct me if I'm wrong, but, if I had just a UTI, wouldn't it continue to hurt to urinate until I was treated? It hurt for about 24hours after I cathed, then the pain was gone.

I agree I obviously needed additional education (the only lesson I received was during the urodynamics testing, the tech taught me how to do it with a mirror, which of course I could do with her assistance) but I left message after message with the medical assistant, and only got a call back from the woman who did the testing, never the doctor. I do know the testing showed I retained 100ccs, which the tech, not the doctor (because she was the only one who called me back!) wasn't a concern.  I figured, if it wasn't a concern, then why the @##@$ was I cathing myself? LOL

I don't mean to sound like a weenie (although I know I am) but the cathing was not a good experience. I tried, I really did. But I already had problems getting the stream going, and after I cathed, it was painful to urinate. Its like negative reinforcment, when you KNOW it is going to hurt, then you REALLY can't go. Also, after the  last time I cathed, the following night I was up all night with a spastic bladder. I REALLY had the urge to go, but couldn't. After almost 3 hours, I finally went. I then took the antibiotics that were  presribed and hadn't had a problem since.

I wonder, too, if I were to get into cathing  myself again if I could get a nurse to come out to my home. I had home health for all of the steroids I receieved last year, and it was a godsend. I'd pay out of pocket for that convenience. Anyways, the yearly ultrasound is a good idea. My hesitency has gotten better, but is certainly not back to normal. Next time I see my neuro, I will talk to her about it. If I need to see a uro again, I  might look for another once. I don't trust this one. She hasn't been very helpful! I took a half day of work (I work more than an hour from my dr office, I work in the neighboring city from where I live) only for her to spend 5 minutes with me. And, definitely if I need to cath, I need more instruction. That I wholeheartedly agree with.

Quix--I understand the not being able to tell when you're empty thing. I've done a lot of double voiding since this symptom started. It used to be that I'd go, feel empty, get up and move around, and about 5 to 10 minutes later, need to go again. What I'm finding now is that I sit, go, and its like I instinctively know (no contractions yet) that I still have to go. I wait about 5 to 10 seconds, and then I go again. Then, I feel truly empty, and don't get any more contractions. Hopefully that means I'm improving? Although I understand the only way to really know is to get tested again. Blech.

Thanks for your input! Like I said before, I feel for everyone on this thread, whether you're dealing with incontinence or hesitency. Bathroom issues are miserable no matter what.

[rendean]

Addi,
Was your pain similar in nature?  Just wondering...

As for the party, thanks for saving me a hat. As for cake and ice cream, I saved you a piece of cheesecake. This pain party is a step up from the usual party it deserves a step-up in the menu. The ice cream is your choice of homemade hand churned vanilla or peach ice cream. Being that I'm from the peach state, it was the law that I add it to the menu ;-).

Are you supplying the party favors? I'd like a double dose of morphine next time it occurs :-0.

Ren

[johnnymutt]

Ohhhhh, that pain. Sorry, I wasn't putting things together on that. It just hit me as I was re-reading the post's.

I have had that deep in between pain many, many times. Sometimes it lasts for about 2 weeks, and is worse when I use the restroom or have sex. I have been to my GP many times over it, which often resulted in a prostate exam. Nothing has ever been found as to what is causing the pain.
To me, the pain feels like something is all twisted up in there, from the middle of my scrotum, all the way back to my anus. When I urinate or have a bowel movement, things really get flared up down there, and I find myself having to stand up and try to message the area to find some kind of relief. When I am not doing anything, I still find the pain noticeable, but not unbearable.

[addicted2harleys]

Wow, Ren.  First off, here is your party hat.  I was saving it for you.

Your dream sounds awful!  ;0(  I am so so sorry you have experienced something so traumatic...and repetitive.

I was quite embarrassed to explain what was going on, but that only set in AFTER the morphine.  Before that the pain was so strong I didn't care who the hell knew about it, as long as someone could make it go away....you know?

So, since this is a party, where is the cake?  Ice cream?

Addi

[rendean]

I'm late to the party, again, but Addi , and others, I have experienced the same pain that won Addi some morphine. It has occurred several times, including once in my 20's and I attributed to a GI virus.

Now, it usually occurs at night, often I awaken form the same dream. This iis graphic so  the squeamish need to stop here.

The dream is that I am being hit or raped anally with a baseball bat. I wake up in agony and unable to move. I never thought about seeking relief from the ER, guess too shy to describe in person to others. The duration is variable from 1-2 minutes to 30 minutes. If I stay frozen in one spot it is bearable but so was childbirth...the difference being in childbirth I went home with a prize...a newborn. No prize with this pain.

I do have problems with incontinence, both urine and fecal. The second one has pretty much stopped since I started all my meds including one for my blood pressure, verapamil which is infamous for constipation, throw in a handful of MS related drugs and muscle relaxants.

Glad this sensitive subject has been discussed once again. Thanks Addi for starting the thread and Quix and everyone else for adding their stories and advice as well.

Ren

[Quixotic1]

Someone just askewd me an important question.

Will everyone eventually need to self-catherterize?  Absolutely not.  Self-cathing is done for people who have significant urine retained in the bladder after emptying.  This usually means more than about 100cc's.  (a little less than half a cup).  Retainted urine likes to get infected and once retention starts, it sometimes progresses insidiously to become more than the bladder can easily hold and will reflux (or back up) the tube that drains the kidney.  This can cause kidney damage and eventually could cause kidney failure.

The most common problem with MSers is OverActive Bladder, OAB.  This is treated with a combination of Pelvic Floor strengthening, meds, and neuromodulation.  It doesn't need self-catheterization.

I seem to be dominating this discussion when I really want people to share their stories.  Sorry.

Quix

[Quixotic1]

U2 - I find it interesting that men also can have this deep ache in the "middle" region.  I have had it, but not as bad as you or Addi.  Much of the basic interior musculature is similar between men and women and the nerves come from the same place, so I guess it isn't surprising.  

I feel bad for you about the sexual aspect.  That can be a really devastating part of this disease and it surely can isolate us.  I would like to know more about what we can do and how our partners can help us.

Addi - Momma Quix talking here.  I do understand how deep modesty can run, But.....we all need to be mature and proactive enough to face our problems.  That may include desensitizing ourselves to examination and self-touching.  What a tragedy it would be to ignore a problem because of embarrassment and suffer life-threatening consequences.  Why don't you PM me.

Lois - This disease is soooo unpredictable.  Urinary and Bowel problems are so common in MS that something like 80% of people will have some kind of urinary problem and about 50% will have problems like constipation or trouble eliminating.  So that shows that a certain number will never have the problem.  On top of that it is safe to say that things that are intermittent now may stay that way, improve, or progress.  No, you are not doomed to the worst of things.

John - I, too, would like to hear from any men that self-cath.  In all honestly, I have heard from some women that being able to self-cath and solve the problem made life sooooo much simpler.  I'm not sure if it is that much more painful for men to do, but it sure is easier.

Quix

[addicted2harleys]

Thanks ess and Quix (I will PM you).  

[essdipity]

Well, no point in denying the ick factor, but one gets past that pretty quickly. There's nothing scary though. It gets to be just another part of life.

ess

[addicted2harleys]

With all the catheter talk on here, I have become a little reluctant to pursue this issue with my doc.  The thought of having to use one on myself scares the hell out of me.  And, the thought of a nurse SHOWING me how to do something like that....oh my.

Just being a lil honest...

Addi

[Quixotic1]

John - men are more susceptible to the urine backing up and causing kidney damage and eventually kidney failure.  The screening test for this problem of urine retention and ureteral reflux is a "kidney ultrasound."  Please ask your doc about one.

The Ureters are the tubes leading from the kidneys and which drain urine into the bladder.

Tired - how much training did your urologist give you?  I had excellent training with mirrors and all from the nurse of my Uro-G.  It worked for a short while and then, I completely couldn't do it.  The attempts were causing pain and bringing back blood.  Somehow during that time I lost more sensation in the area, too.  

I discussed how terribly painful it was to remove the catheter when I was successful.  I could feel the bladder spasm down around it.  It felt like dragging a pinecone through my urethra.  She said that she like to use a muscle relaxant and her favorite is low-dose valium.

Later, I tried the "direct stab" method and found that this worked very well.  As it turns out, I really don't have much retention and am happy just to take the time to try to overcome the hesitancy and empty.

However, be aware that you may not be able to tell when your bladder is truly empty.  In MS the signals may be false.  Just as you may feel you need to pee when you really don't, you can feel like all is empty when it really isn't.  I understand your tantrum, but would you at least have a remal ultrasound once a year or so, so you don't wind up needing a Kidney Transplant in the future?

Misty and others who find they can't pee when the need to:  Try the old nurses' trick of running water, placing your hand in warm water, or if the sink or tub is close enough, place your hand in the running water.  This activates the brain to send out signals to relax the sphincter to allow you to pee.

Would it be too painful for me to comment that this thread has been cathartic for many of us??

Quixxles

[johnnymutt]

I've given serious thought about talking to my doc about self cathing. Any guy's perspectives on the subject?
It scare the heck out of me to think about it, but I really can't believe that holding all that urine in all the time is good for me in any way.

[Tiredofbeingnumb]

Ess, I appreciate your advice, and trust me, I've considered all the implications. In my last appt with my neurologist, I told her the situation and that I stopped cathing and taking the medication and told her why. I told her that my symptoms seemed to be getting better (still taking me a few minutes to go in the morning, but not an hour at least) and that my bladder contractions weren't nearly painful as they were at the height of this problem. I get "normal" strength urges to go,  it just takes concentration to relax my muscles.

I think if I were to pursue this further I would get another urologist. Like I said, despite all of  my messages, I never got a callback from her, and the last appt I had really was a waste of time. I  had left a message that I was getting blood on the catheter (and it hurt to take it out) and she spent 5 minutes with me and told me that was normal. Yes, I questioned that, but hey, she's the doctor, right?

But I don't want to pursue this further! (Can I do a 5 year old stomping of  my feet and shaking my arms??? hee hee)  I guess I am resigned to taking 10-15 minutes to go to the bathroom every morning. And I understand the risks of my bladder contracting really hard and not being able to go (I've had an ultrasound of my kidneys and it was normal) but I do think the urges have gotten better. I think now, it is at a point that my pelvic muscles are "trained" to clamp up whenever I have to go, I guess originally to keep me from peeing on myself.  I've also done some research online and now realize there are some treatments available beyond cathing (like muscle relaxants and even pelvic floor therapy, who knew? which makes me wonder why that wasn't brought up in the first place, but oh well.

If it hasn't continued to get better by the time I see my neuro again, I will mention I still have this problem. It is easy to put this issue to the back of my mind, especially since I only  have this problem first thing in the morning. Sigh.

[essdipity]

Self-cathing shouldn't be painful. Annoying, maybe, but that's it.

I'm guessing you need another lesson in getting this right, so please make an appointment. You could be harming your kidneys, something you sure don't want to do.

Sending good luck,
ess

[Tiredofbeingnumb]

I have the urinary hesitancy issue myself, but I feel for all of you. I've also on rare occasions had "accidents" with regards to BMs. I would get the urge, but ignore it, until I couldn't ignore it anymore and then I'd go, whether I wanted to or not! So, I've at least learned to go to the bathroom when I get the BM urge. That seems to prevent accidents.

My urinary hesitancy is still there. I wrote a while back about urodynamics testing and then how it went. I was on Vesicare (which was great, I learned what a normal bladder was like) and I was self cathing because it could take me an hour or more to urinate in the morning (first morning urine was the hardest, the rest of the day I was ok), but I had trouble cathing myself (and was causing great pain in the process) and left a message with my doctor that i was fed up with cathing, and because I was stopping cathing I was stopping taking Vesicare (I had urine retention as well, and it specifially states on the box NOT to take the drug if you can't empty all the way, I asked my dr about this and she said it wasn't a problem because I was cathing myself, but when I stopped cathing, I stopped taking the drug).  

So I've quit seeing the urologist because she wasn't any help! I left her a message saying why I wasn't cathing (I was hurting myself!!!) and wasn't taking the drug, and she never called me back. I got a call back from the technician who did my urodynamics testing, and she said I wasn't retaining that much urine, and the only reason I was cathing was to make things go faster in the morning. Well, I'd rather take a few minutes to go "naturally" than torture myself with cathing.

Since all of that, my hesitancy has gotten a bit better. It takes me about 10-15 minutes in the morning now to urinate, which I know is still 10-15 minutes too long, but better than cathing myself! I've noticed that the more water I drink, the easier it is for me to go. BUT,now I am waking up once, sometimes twice a night to go to the bathroom. ARGH. And now I'm getting the start, stop, start, stop when I actually do go. My pelvic muscles just tighten up without my control. It is frustrating. But what can you do? AT least I can go.

I'm sorry that so many people are having bathroom problems. It really stinks.

[addicted2harleys]

Wow!  I did not expect to get this kind of turn-out to my problem party!  While I am definitely glad I have a group of friends in this department, I am so so sorry we all are having these issues.  Thank you boys, for chirping in!  I truly didn't expect to see that.  

After I wrote this I laid down for a bit.  I slept til 3:30 this morning.  Whoa!  lol  

Ufrustrated - I find it interesting that you seem to have the same pain, well spasms, that I had.  And you are right, quality of life....so true.  Thanks for not being bashful.

Jess - Thanks for the hug and back atcha.  As far as the orgasms, I think if I was in your shoes I would be doing the same as you.  I was in the beginning stages of this a couple years ago.  I did see my drive slowing down a little.  But, I ended up pushing my partner away from me...I didn't find it fair for him to have to be "stuck" with me.  I have stayed single since.  I truly miss the intimacy, but am not ready to let someone into my nightmare, so to say.  

Frank - sure seems like "Everybody poops", huh?  lol  Before I realized that my "push" sensors weren't working right, I was going nowhere blowing out blood vessels from trying to force it, same as you.  I did get up the courage to tell my doc....ok, I will be honest here, too...MY MOM told my doc and I was mortified!!  lol  But he told me to take stool softeners every day...I am now and it is working....it isn't making mine all that loose, just kind of normal.  Gosh, I love my mom, but....well, that is a different story.  *grin*  Thanks for piping in and giving a male perspective.  

shaw - Get a mattress cover.  That is what I did.  You are in kinda a tight spot with hubby.  With him not wanting to hear about anything, and you needing to talk, boy that is rough.  I am thinking that you shouldn't hide things from him....maybe he will see enough symptoms to realize that something really is going on with you?  I am glad you do have your sis for a sounding board tho.

Wobbly - You feel the same pain, too?  I am so sorry!  I wouldn't wish it on anyone!  I am gonna tell my doc...you need to also.  Hugs~

mistylee - looks like you need to have a discussion with your doc, too.  ;0/  Thanks for joining in and letting me know I am not alone with my issues, even tho ours don't mirror each other.

Debs - Yeah, I noted where Quix mentioned the lesion area.  I am so anxious to get my new MRI's done.  That sux that you can't get Milk of Mag there.  Don't you know anyone state side that can send you some in the mail when you need it?

Johnny - You joined the choir, huh?  Looks like you have something to talk to your doc about, too.  Thanks for joining in with the male perspective.  Did you go back to the doc yet?

RF - Sorry to hear that you understand the pain thing.  ;0(  I hope it is not a progressive type of thing, too...

I myself did a Quix told me to do (I can be so obedient sometimes!) and printed out my post.  I plan on handing it to my doc on Wednesday.  While I do not think I could come out and say these things to him, I am pretty sure I can hand him a piece of paper.  Crazy the way the mind works....makes no sense to me.  

Thanks again, you all!
Addi

[RedFlame]

This really is a great thread---thanks for helping us be brutally honest about these things so we know it's nothing to be ashamed of.

I have to push my urine out.  When I get up in the middle of the night I always have to push it.  Then in the evenings I will go, and think I'm done only to 'feel' urgency again and return to the toilet.  This is intermittent right now.

I do have pain on my pelvic floor. I have had it for a couple of years now and it can be extremely intense.  I had a colonoscopy in 08 thinking that there was a problem digestively but it was negative.  

As far as the BM area, I can't completely empty.  I have cramps and may go 7 times a day.

I also have an area adjacent to the anus in the back portion that is completely numb.  I sometimes have to massage that to have a movement.  

So here is my question:

Quix,  do you think that these things that are intermittent now will it eventually become an every day thing?  Is it progressive like that?   I have never had problems with my urinary system, not even an infection.

thank you lois

[shermay]

Hope your sitting on the loo reading this .......LOL

Great to see a guy posting on this sensative subject:)

Debs

[johnnymutt]

Alright, alright, you've called us out Quix, hehe. I've been lurking on this subjects.

I do have some very similar issues as the rest. I can  no longer push out my urine. Instead, usually have to sit down, and almost meditated to get the urine stream going. If I dare start to push, it shuts down, and I'm done. It usually takes me a good ten minutes to get my bladder empty enough to feel like I've done something. At work, through the day, I usually just pee about 20-30 times a day.

As far as the bowel thing. I have leakage more and more lately. Ummm Embarrassing :oP . It usually is after I have a movement, and am completely sure that I am finished. About 10 minutes or so later, I find myself back in there cleaning up. Sometimes this can go on for hours.

It's really bad if I'm at work and out of nowhere, I get leakage. Ugh, I'm 37 yrs old and I feel like I falling apart sometimes, lol.

Great thread going on here, you've all got me singing like a birdy now :)

Johnny