www.incontinentsupport.org

HumanFly-
I don’t usually get into the details because of the stigma associated. I have a physical birth defect of the bladder sphincter in that it doesn’t close off properly. That accounts for my near constant leakage these days. I also have MS which affects my nerves in the region. I generally don’t feel the need to urinate and have trouble controlling it. I get spasms from time to time that causes random gushes.
I have other MS related issues too but minor.

Ellyn:

Thanks for sharing about your condition. Even though I wasn't the one who asked it was helpful to me. MS is something that keeps popping up as a possible explanation of my issues. It would also fall in line with other strange health issues I've had. I'm also at an age where symptoms start to become prevalent from what I've read. I also know it's a doozy to get diagnosed.

All:

Update for me, i had my latest round of Urodynamics testing today. Although I thought I remembered there being a pre-numbing agent before the cathedar got inserted, I was happy to get this done. Bless all of you that use cathedars, that is not a comfortable feeling.

The test went pretty quick, as my bladder will not tolerate much liquid before telling me that it is time to go. There wasn't any blockage, no UTI. Seems like I just have an extremely over active bladder from what I could observe. Obviously my Doctor hasn't reviewed any of the results yet so I still don't have answers, but I am closer, and I'm glad to have gotten this part done.

So, a couple more weeks till I go back for my results. For now I wait, (try not to worry about it) deal with daily maintenance, and just keep going I guess. There's nothing to really do in the meantime. Eventually I'll get a treatment plan. I'm at least pretty sure they won't tell me to "just hold it", and that I have "a bladder of a pregnant woman" (like the macho Army Major Urologist said when I was 19)

Anyhow, I really hope everyone has a great weekend! Thanks for helping me push this week.

C.G.

_________________
Thank you kindly,
CG

The birth defect was diagnosed when I was in my early teens. My gynecologist actually was the first to suspect the deformity. Before that, I was the subject of a great deal of demeaning ridicule, parental abuse, and very cruel teasing by peers for years. It took 10 more years to diagnose MS. No one should suffer like that!!

Ellyn:

Absolutely nobody should have to be subjected to ridicule for stuff like that. I'm also sorry your parents didn't provide the safety that was THEIR DAMN JOB!!! I'm so glad you you were able to rise above all of that, and what you continue deal with on a daily basis, with your health. You sound like you have much going well for you, from your earlier post. I again, am inspired by your perseverance, and your words will hold that much more weight in my eyes. Even though you might have processed much of what you mentioned above, I would be more than happy to offer a friendly ear if YOU ever feel like vent posting on here.

In regards to it taking 10 years to finally get your MS diagnosis, I'm so sorry you had to go through that. I can only imagine how difficult that must've been, wondering, and being told from doctors that they can't find any reason for a particular complaint. I read about how mysterious, and tricky it can be to diagnose. I'm actually kind of nervous that my symptoms may have a neurological root cause. Especially after my tests today when they didn't see any blockage, enlarged prostate, or urine retention. But hey, I can be a hypochondriac, so right right now that stuff is banned from my thoughts.

At any rate, I will need to move on with whatever future circumstances I come up against. Hopefully I can get some answers soon here. Like realworldIC said earlier in this string, a diagnosis will take alot of the pressure off. Just need that starting point.

_________________
Thank you kindly,
CG

I don't post much, but I do read others posts almost daily. When I start feeling sorry for my self, reading these posts helps.

My biggest fear in my situation is the anxiety I feel when I think I have conquered my issues. My incontinence has been sporadic for many years manifesting in series of good days, and not so good days. My prostatectomy of nearly 4 years ago combined with the removal of a large diverticula went well according to my urologist, and he is a very respected surgeon. The problem is that he/they can't really put a reason why I'm still having incontinence to the degree I am. He indicates that it comes from a combination of things. As a result, I wear diapers much of the time, and have for a number of years. Then, why can't I just accept that it is what it is? Now, that I have heart failure problems my anxiety is compounded. I'm trying to live life as normal as possible. Although the pandemic isn't helping much. My wife along with some friends are planning an overseas trip in a year or so, which is already causing me to think if I should really adventure that far with a combination of health issues. What if something happens when I'm on the trip? How do I manage packing and managing wearing diapers? Will others be able to notice? Should I just let everyone know of my health issues? When I'm having a series of good days, should I venture out unprotected? All these questions surface in my thinking almost daily, which in turn raises my anxiety level.

It seems like many of you have managed, and accepted your situation fairly well. Ellyn, I think you just might be my hero. Your contributions help more' ,, than you may know. You, and others, have more serious issues, but seem to have gone on with life with a reasonably positive attitude. I applaud all of you.

Ok, I'm done ranting and feeling sorry for myself.

DP66:
Please rant away! I'm glad you did. It's huge for me to be able actually voice thoughts that have spinning through my head, so I'm glad you felt inspired to share yours. I urge other folks who have been thinking about posting a thought, story, or a good old fashioned "rant", to do so too.

Totally agree with you that reading other's accounts of their feelings and experiences is so incredibly helpful!! It validates the feelings that I've mostly kept to myself about this stuff.

P. S. You have my blessing to go ahead and feel sorry for yourself for today, but tomorrow you have to come up with a plan. Ready? Go! (My attempt at a pep talk)

_________________
Thank you kindly,
CG

Ellyn,

Your account of parental and peer abuse struck a note with me. Such abuse can be horrible, even life-threatening. I have been there; I was removed from my family during my adolescence, and I have spent every year since dealing with the consequences. MS is a tricky diagnosis; its association with incontinence is well documented, but it must have caused you intense grief growing up. Your tale is another reason to be thankful for this site. Good luck, good health, and keep us informed.

Thank you Patrick and CG. I generally don’t get into my personal issues much, especially the MS. I can live a pretty normal life with incontinence, and other than here, very few know of my need for diapers. With my body shape and choice of wardrobe, I can conceal cloth diapers and any disposable quite effectively. It’s one thing for my close friends to know of my incontinence, but when they hear MS, they instantly turn on the huge sympathy thing and our whole relationship changes. Very few people know of my childhood horrors either (other than here) as that makes me beyond uncomfortable. Fortunately, I live far enough away from where I grew up, I seldom run into any of my tormentors. I did and do have a few close friends from back then that supported me through it all, otherwise who knows what would have happened. Many of you probably remember me talking about my relationship with my parents who have been divorced for years. They too live a ways away that they aren’t around me or my family a lot.
Well, that’s that. I felt the need to offer HumanFly an explanation as to my medical issues but I’m probably keeping most of it to myself from now on. I will obviously continue to offer my support and insight to all that ask for it! Soooo many of you have offered my much needed support in the past when I really needed it. Who knows how a few kind words might affect a person in desperate need of support.... I’ve been there.

Well said Patrick! Your story gets more inspiring as you share it, too. As a dad I can't stand the thought of my babies hurting. I can't even fathom the thought of inflicting that pain on them whether directly, or accidently through shitty parenting. I'm sorry that had to be a chapter in your books. If I may though, I'm glad you decided to share this stuff. If folks are reading that can relate, and you help them that is God's work. For real! I was in a really dark place a couple weeks ago before reading people's posts on this site. I've had a lot of better days since then!

_________________
Thank you kindly,
CG

This.

_________________
Thank you kindly,
CG