HELP! My Story starting to self-cath

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Have had acute retention every few years. I also have chronic incomplete blader emptying.
Just diagnosed with dysfunctional voiding syndrome. This basically means that my pelvic floor muscles spasm and dysfunction to a point that I cant pee. The bowels are also affected.
It's an excruciatingly painful condition most of the time.
Currently on my fourth round of hell. currently learning to self cath with foley catheters. I also need indwelling caths for a week or two at a time
This is a very hard thing for me. Not exactly a skill I wanted to need.
I was also molested by several men growing up. Which makes it terribly uncomfortable for men to be touching and examining that area. It doesn't help that it seems like all the uro doctors and techs in the office are males.
I feel really alone in my suffering since my syndrome is very rare if not unheard of in adults.

 

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It may not be so rare
How old are you?
When did this start?
Do you have pain in the groin?
Do you have problems hanging on to your bladder before you get to the bathroom?
Do you get up a few times at night to pass urine?

 

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I have not had the exact same experience you have had but, I can say that to self cath can be a bit nerve wracking in the beginning. It usually gets easier within a short amount of time. When you have to see the medical professionals it helps if you do all you can do to relax your body and do heavy deep breathing during the whole procedure. If you concentrate on breathing, you will help the muscles relax and make it much easier for you. Have you heard of the "FEAR-TENSION-PAIN" syndrome? If you are fearful, uptight, and/or nervous, your body becomes very tense, and will react with pain. (sort of a self defense mechanism)
Give a try. Good luck!

 

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Im 35 it started 6 or 7 years ago. Its always been on and off like I won't have problems for a year or two. I have lots of pain in the groin which is a new symptom for me. I do have a history of not making it to toilet in time. I used the get up and pee at night, but I haven't in a while. However since being hooked up to a night bag off and on since thanksgiving I've discovered I make 1,200-1,500ml of pee during 8hrs of sleep

 

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Thats interesting and I'm astonished that your bladder has that capacity. If I get to the about ready to explode (Totally full) stage its shy of 300ml I had urodynamics done and they reported "Small Bladder" but I guess I didn't realize how small.

Can I ask why they use a foley? Wouldn't cathing with a use once and toss type be better? I've had foleys after surgery and one had to stay in for quite a while and it was murder.

 

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I must have a Foley (24fr) inserted usually once per month and use for 2 weeks, to dilate me as I cannot get my straight catheters in then back too 8 times per day of self cathing. It does help, but the 24fr is so big, but they wont let me go back to a 22fr as it does keep me self cathing . Their long term goal for me is a suprapubic, they continue to tell me this is what will be best for me

 

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22fr for self cathing? Holy crap. I didn't know they even have them that big. Can I suggest something? Give coloplast (or your Uro) and ask for some samples to size yourself properly. Coloplast has two catheters that telescope starting at 12ft and at the end are 18fr.

One problem with hospitals and foleys is they really just wing it (Thats my impression) on the size and bigger is always better for them because they obviously don't want to deal with any leakage around the outside edge.

If your going to self Cath I would be starting small (like 12) and see how that feels. And since you have a prescription for cathing already call Coloplast and ask them if they would send you some samples. Tell them your trying to find a better fit and be sure to ask them about the Speedi Compact (The 12fr - 18) In my limited experience with it that one is remarkably easy to get in. Maybe you can avoid the need to be dilated all the time.

 

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Just wondering how your doing boomersway? After my last post I wanted to add that they have put me on a drug to dial back the amount of times I need to urinate and this means fewer cathings. I would check everything else before having them do any cutting but if your stuck with a Foley I can see the desire to get away from that. I never quite figured out how to make that work and not end up hurting like hell.

One additional suggestion. The caths that come self lubricated at 10x better then the ones you dab gel on. It keeps them fully lubricated so there are no dry spots to scrape the urethera. Also be on the lookout for polished eyelits. The openings that go into the bladder should be as smooth as possible.

Oh! What about sounding? Maybe its just a need to be dialated once in a while? I don't know much about that but maybe one more thing to ask your doctor about?

Tell me how its going. Have a good day!

 

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For the last two years my daughter has been experiencing retention problems. She may go to bed and wake up the next morning and gained 10 to 15 lbs. She gets frequent uti's and during the uti's she gets really sleepy and then she will have periods of going completely out, she has slurred speech, falls a lot and these episodes last for as long as she has the uti. We have been to several doctors and don't seem to get any help. This only happens when she get a uti.
Does anyone have any suggestions as to what she should do?