I don't know what to do (warning: a lot of whining going on here!)

[Tiredofbeingnumb]

Hi guys. I posted a week or two ago about urodynamics testing, and how that went. Well, I was taught how to self catheterize, which seemed simple enough. Ugh. Well, it has definitely been hit or miss. Initially, I would be able to do it, but there would be some blood on the catheter when I took it out. No pain (well, it stung slightly as I removed it) but it freaked  me out. When I got in to see the doctor, she assured me that a little bit of blood was normal, that it was a mucosa and that some irritation is normal...just  needed to use more lube. Ok, so I forged again.

I cathed myself 2 days ago, before I went to work (I really need to do this in the morning, as that is when I have the most trouble going) and it went great! Inserted it easily, took it out easily. Only thing was, I didn't get all of the urine out, as I had to go again 5 minutes later. But I thought, well, it is only going to take some practice. My confidence was high. Fast forward to today. I only feel  comfortable saying this with the anonomity of the internet, but, I couldn't find the urethra! It is so embarassing to even say that. How could I cath so well 2 days ago, and now couldn't even find the entrance?!?! I used up 5 caths today. I feel like I need a remedial cath course.

I am upset, embarassed, and depressed. I don't really know what to do. The way this dr office works is that I have to leave a message with the nurse of that particular dr (in my dr's case, a medical assistant) and then that message will be given to the doctor. When I called about the blood on the catheter, initially I said "I have a concern about the cathing procedure, will the doctor please call me back" no response. I had to actually say in the message "there is blood on the catheter" to get a call back. Even if I wanted to talk to the doctor (which I kind of do, but in the same sense, I am SO embarassed), what  message do I leave? "Can you please tell Dr X that I can't find my own urethra, so I am unable to cath myself?"

So now I am going into a downward spiral of sorts. Until now, I've been able to cope pretty well with my symptoms. But this cathing thing is just so hard for me! Even if I can get it in, the feeling of the catheter inside makes me woozy. I am such a weenie! So now I am thinking of MS as a whole and how this is just going to get worse, not better, which of course makes me feel worse, not better. Like I said, I don't know what to do, cause I don't know who to talk to. Yes, we have a support group in this town but (and as I say this, I mean absolutely no disrespect to those who have MS and are older than me) but they are all at LEASE 20 to 30 years older than me. So 20 something and 30 something people don't go to support groups?? Life just s.ucks in general right now.

Well, I am going to sign off and head to  my parents. They live a couple of hours away, but it is always a comfort to go there. Which is another thing I feel bad about! I am now 30 years old, and still need to see my parents! When I was going through diagnosis and the first year with MS, I was in Florida, so even with all that was going on, I only saw my parents a couple of times a year. Now that we live closer, it is sooo nice, but I almost feel like I am leaning too much on them. I am 30, I shouldn't need my parents so much!

Sigh. Well, I did warn you guys this would be a whiny post. If you've read this far, thank you. Again, I mean no disrespect to those of you that are older than me and have MS (I know it s.ucks for everyone with this MiSerable disease) it just also stinks that I can't find anyone of my age who has this!

Ok, I will stop whining now. I hope everyone has a safe and wonderful weekend. Take care.

[Lulu54]

Practice, practice and more practice, ok?  I swear to you that once  you master the technique, being able to completely empty your bladder is a very liberating experience.

You will no longer worry about where the nearest restroom is.  You can go for longer walks without concerns of hurrying home.  You should even be able to sit through a feature length movie if there was something good playing!  

The tub, huh? MY urogyno instructed me on her exam table, and used one of those plastic spittoon things to drain into.  You might consider that position for a try of two. I can't quite picture the tub because mine is cold, it is really hard, and as Mary pointed out, I would then have to get back up! LOL


the next time you write, I anticipate you will be telling us how easy this has become for you.

Lu

[twopack]

Now you returned the favor of laughter.  I was actually LOL as I read about the magnified double vision.  (I know it wasn't funny at the time.)  It's so good to hear you sounding a little more confident and relaxed.

When you are ready to return to the toilet seat, you may want to try sitting backwards (facing the tank).  Hubby can get behind you and brace your back to begin with and that will allow you to sit closer to the edge and have more room.  This would have you in a position to avoid floor puddles and might provide a place to hang your mirror.

BTW, the tub is a great idea!  I'm impressed that you are able to get back on your feet and climb out too.   That is, unless you're still in there and hubby brought you the lab top?  ;-}

Mary

[Tiredofbeingnumb]

I just want to say how grateful I am for everybody's responses. It is nice to know I am not the only one going through this kind of stuff (but yet not nice to know that this seems to be a common problem!).

Rendean, Twopack, the advice about leaving in your misses is brilliant! That was one of my problems...I would think it was "in", but realized that it was "in" the wrong hole! Flagging, of sorts the area would be a great way to prevent that from happening again, and a good visual guide on that I need to go more north.

Lulu...I do sit down, and this may be TMI, but I actually use the bath tub. Ok, I know, gross, but the toilet seat doesn't give me enough room to maneuver, and I was afraid that I was going to concentrate so much on inserting the catheter, that I would forget to position the end in the toilet, and pee on the floor. This way, by sitting on the edge of the bathtub, all I would have to worry about was inserting the catheter, and I wouldn't have to worry about making a  mess on the floor. I do have one of those mirrors that stands up, and I place that on the inside of the bathtub. Once I get proficient on inserting it, I'll move to the toilet. I did try briefly the standing position, but for one, it didn't work, and two, once I get the catheter in, the feeling of it inside makes me a bit woozy...so, for safety's sake, I need to be sitting down. My husband is so good too, he's my sort of spotter, lol, in case I get dizzy. Bless him.

Growing2boys, I'm sorry it took 2 nurses to cath you! But in a weird way, that makes me feel better. Not because you had to go through that, but if NURSES, who can clearly see the area, have trouble finding the urethra, then of course someone who is trying to find her own may have issues. I guess I just need to be kinder to myself. I know it is there, I've cathed before, it hasn't gone away, lol, I just need to be patient and try again. I do have one of those stand up mirrors, but it is weird in that one side is magnified, which you would think would be helpful, except for some reason, I see double in it. So two vaginas, four labias...yeah well, you can see why I was confused. LOL. Again, I think I just need to be patient and try again.

When I talked to the dr about the fact that the catheter was a bit bloody when I pulled it out, and that my first urination after cathing stung, she said that was ok. That the open part of the catheter near the tip was probably scraping the inside, but I just need to make sure to apply plenty of ky jelly to the area. Which seems to have helped. When I was able to cath a few days ago, I didn't have a problem.

Again, I want to thank everybody for their kind thoughts and advice! Just got back from my parents. We didn't do anything, but it was just nice to be with them. My Mom said also that with one word from me, she'd come up here in an instant. :) It is nice to have so much support. Of course, my husband is great, too! Can't leave him out.

Oh, and Twopack, your first paragraph was hysterical! I think, despite the fact that our anatomy may be a bit more complicated, at least we dont have to stick the catheter as far as a man would have to!

Thanks again everyone!!

[twopack]

Oh Lou, I just can't help thinking that although men may have an easier time finding the entrance ramp, theirs is a long and winding road with a narrow pass along the way.  And you know how famous they are for refusing to stop and ask directions.  I'm not sure they have it any better.

One more little trick.  If you miss your mark ladies, leave that catheter in place and remove it AFTER you've found your target.  It's a plugging the dike concept that saves you from making the same directional mistake twice.  (I know this may sound impossible to some of you but Quix is very right that women are not all built the same.)

BTW, no offense taken about the support groups but I find it interesting that you've met mostly older women there.  Maybe the younger folk are more comfortable online or have less time to travel to groups?  Just guessing.  Do the older women dismiss you?  I would hope one might become a mentor of sorts for you.  Glad to hear you have your mother though.  Enjoy her as much as you can without question or regret.

If nothing else, the response here lets you know that you are not alone in what is required of you to maintain your health.  You would be surprised how many people you pass in a given day that face lifestyle changes like yours that would have been unthinkable by their younger selves.  Who would have thought that self injections and caths could ever be part of our daily routines for healthier living?  Life is crazy!

Hope you are refreshed by the weekend away.
Mary

[Lulu54]

What position are you in when you attempt this self-cath?  I find sitting on the toilet is the easiest but my urogyno swears some women do it best standing up.  The mirror is an excellent idea - that is what my doctor used to teach me how to do this. The auto repair mirror is absolutely a brilliant idea.  

I still ocassionally  miss the urethra, but usually I can do this one handed.  It does get easier with practice, I promise!


As for emptying completely, when your bladder is completely drained, you will feel a slight suction "pop"  - I don't know how else to describe it.  As Quix pointed out, constipation can play a role in this and you may also find you need to ease the cath out just a bit and then push it back in to get everything drained.

Could you have a UTI that is causing the pain and irritation/bleeding?  That needs to be checked if it wasn't done just recently.  

And finally, as silly as this sounds I need to ask if you are using the right end of the catheter?  Recently someone PM'd me about the discomfort in doing this and she actually was using the wrong end.  There should be a rounded end on the catheter that you are inserting.

There are prelubricated catheters that your doctor can rx if you find you need lubrication to do this.  There is even a catheter that is self contained and you never touch the tubing to insert - I've seen the print ads for that one and can't quite figure out how it would work!  

All this discussion about size made me go and look at my caths - 14 FR 6" is what I have and from what I just read through google that is on the smaller size. Be sure to check what you have on hand.

Yes, we are at a disadvantage doing this over how easy men have it, but we are women and can do anything, right?  (hum a Helen Reddy tune here)

whine away, as long as you provide some cheese to go with it!

be well, Lu

[Growing2Boys]

Well I just want to say I appreciate your post. I don't cath yet, but I've been having retention problems & I was SO curious how a woman was supposed to quickly find her own urethra. It took 2 nurses 10 minutes (using a flash light) to put my cath in when I was in the hospital. That depressed the heck out of me. Was I going to need a cave exploring helmet & fun house mirror at home?
Quix always has the most wonderful advice.
All I can add is that I have been casually browsing for vagina focused mirrors :) LOL
I ran across one at an auto parts store that I napped for my future hunting. It has a long handle & a circle mirror at the end. It can be shaped to go around corners & can clamp onto things or sit flat....apparently guys use it for looking inside engines, but it is a perfect self vagina viewing device! Check out your local auto zone...Ha!
My only other suggestion would be to ask for a smaller size cathetor (I know the ones we use at work come in 14, 16 or 18 FR sizes ) I don't think 1 size fits all. My guess is that until you are good at it a smaller size might be better? I may be wrong on that, but it might be worth asking about?

Try to keep your chin up
Sarah

[Quixotic1]

More on all of this later, but I am 58 (I think) and I need contact with my mom every day!  There IS NO replacement!

It is not uncommon for the initial tries to go well and then have problems.  Ren touched on a couple of things, swelling around the urethra (which happens quite quickly), spasm of the urethra, and another I'll breing up is constipation.  If there is a lot of stool in the rectum, in some women this will do one or both of two things.  First it can change the shape of the bladder (by pushing on it).  That can subtly change the position of the urethra.  Or it can press directly on the tissue around the urethra.

And another possibility that changes things would be if the bladder is really distended from being very overfull.

In the 1970's in medical school as part of the growing feminist movement we were taught to do a vaginal speculum exam (clear plastic speculum) on ourselves.  They make (or made) these mirrors that held themselves up by folding back into kind of a tripod or triangle shape.  If you were propped up a little you can see into the mirroe to locate the urethra.  Once you know where it is visually, it is often easier to find then without the mirror.

I would see if there is an incontinence clinic associated with the MS department of the local university or large medical center or associated with a large spinal rehab center that can help you learn.

Believe me, all women are not built the same.  The urethra can vary in location from clearly on the outside to tucked under the anterior edge of the vagina.  But, once you get the hang of it, it will get easier and easier.

Quix

[schnauzerlady257]

I have no advice, but wanted to say, whine all you like...you are entitled to it!  And I still need my parents and I'm 32.  Sometimes no matter how old you are Mom and Dad are needed for your emotional strength. :)

[rendean]

I'm sorry to hear of your difficulties. First and foremost, don't feel like a whiner and don't worry about needing and wanting your parents.

The forum is here for one and all to vent, rant, ask questions and share your feelings. Whining IS allowed!!! So let loose.;-)

As for needing your parents, join the club. I am close to my parents and I'm over 50. I don't get to go see my mother much anymore due to my health (my dad passed away several years ago.)  but do call often for comfort and support.  If it makes feel better, on September 11th  the first person I called for comfort as I stood in horror watching the TV was my dad. I was in  my 40s and he still could provide the comfort only a parent can.

As for the trouble cathing. I don't have to self-cath but I thought a tip from my old nursing days might help until you proficient at it. On hard to cath females we ould leave in the "misses" so we didn't use the same orifice again. And, the more you poke, the more puffy things are to see and identify , so keep that in mind and stop beating yourself up over this. It will come.  You have already been successful several times so you CAN do this.

Wishing you peace and comfort and good aim.

Hugs,
Ren

PS the tip about aiming for your belly button is a good one. That is how we were taught to cath.

[AMO]

dear TOBN,

i am sorry this   has   been tough road....it   will get easier
Ii   wonder if you having spasms? that can make it kind of painful.
when i began cathing i always needed a mirror. it was auckward   resting iit on the seat and needing two hands to cath. i got a larger   mirroor
did they give you some lidocaine , that helps a little numbing while you are learning
when youu first insert the cath, aim a littlemore toward your belly button, not backwards
you can reuse the caths if you aare running out. i have a antimicrobiotic soap and have a solution to soak them in.
what i want you to do when you get to your folks is   havee a complete frank talk with your mom, i know shhe will help you.....as a mother, if my dauughter needed help and did not ask i would be  so sad.
good resting this weekend, be well amo

[essdipity]

Go ahead and whine all you want! Lots of us do understand.

Cathing isn't all that simple for a woman. We can't see what we're doing, so it's a shot in the dark ;-)  Sometimes this means poking ourselves repeatedly with this plastic thingy, which tends to make everything sensitive, thus increasing the problem.

However, you're new at this! It's okay to feel defeated at first, and it does get better. Ultimately you will find it so simple you'll wonder what the fuss was about. So please give yourself time.

It's fine to go home to mom and dad, and I'm glad you get comfort from it. Right now you're a bit overwhelmed, and retreat is natural. So have a great time and feel better.

One question---did your uro tell you to use lubricant? I hadn't heard of that.

ess