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Thread: What am I experiencing?

  1. #1

    Default What am I experiencing?

    I think I am experiencing the beginning of IC.

    I started a new job two years ago, in a high pressure corporate office environment where I'm required to write lots of IT risk-based documents for internal business units. So I've been sitting down in front of a computer all day for two years, not moving around much.

    No big deal until I got home one day about 4 months after starting to find my feet had swollen to beach balls. I went to the Dr, who referred me to see a cardiac specialist, who put me on a strong diuretic. I survived that experience all of two days - the first day was ok, the second day I'd wet myself at work through the urgency. I stopped those tablets immediately, and went back to my Dr, who tried a gentler version. Still not liking the experience, I stopped taking those diuretics altogether.

    Ever since that episode, I've been urine spotting. Not outwardly noticeable, but I notice it. I'd even started wearing light feminine hygiene pads to stop the wetness, which often did not work well.

    Fast forward to July, and I was noticing this get a bit worse, and my wee pattern getting a bit strange too. I could sit on the toilet, and one day have a seemingly normal stream, and others, have a tiny dribble that didn't seem to satiate the urge to pee. Now, today, all I can do is tiny but frequent dribbles at work. I commute home often in pain and a feeling of being sick and uncomfortable.

    I went overseas in July. By the time I got off the plane after flying 10+ hours, I was wet, my knickers were wet, I had to change. I even predicted it, and took a spare pad and a couple of spare knickers.

    Flew home a few weeks later, same deal, just as wet.

    So a few days after getting home, I pulled out my Tena pullups, and started wearing them. I went to my Dr, told her all about my adventures, and am now booked in to see an Urologist.

    But it's getting worse, or maybe I'm making it worse. I flooded my pullups a few times at home (not deliberately), and thought "screw this, I'm wearing nappies", and for the past 4 weeks, I've been wearing pullups to work, and nappies at home and on weekends. I'm ok with wearing nappies, though the thought of wearing them to work scares me, hence the pullups. I can go out into the public no worries, just not to work.

    Whilst at home, the flooding is getting more frequent, I'm often dribbling in between floods without any warning or sensation, I'll do what I would think a reasonable volume wee into a nappy, then 5 minutes later, do another one with just as much volume.

    When I bend over, or sneeze, or cough, or laugh, or yawn, I leak.

    Today I've been getting bladder spasms that have led to dribbling into the pullup at work, irrespective of whether I've been to the toilet or now. These spasms have been off and on the past few weeks, and can be really unpleasant.

    I'm concerned about the apparent lack of ability to pass wee at work, and seemingly infinite ability to wee at home. I think this is due to my being relaxed at home and in privacy, but really concerned about having another accident at work, so being really tense, which is really tiring. Yes, key in home door phenomenon works really well...

    Some history - I'm 45yo, and 20+ years post-op MtF transgendered (so I still have a prostate - they took all the other bits, bar that little nugget...).

    For pretty much my entire junior years up to University, I was often profoundly bowel IC, but had _really_ good bladder muscles. I could stop mid-stream, and hold it (not now though). Mum used to resort to nappies as punishment of my bowel accidents when I was little, but that never lasted more than a few nights at a time. Docs and shrinks would wave it off as being lazy. But I was never getting any warning or sensation that I needed to go - I would just get a sudden intense pain all through my abdomen, and that's that out it came. That sudden intense pain now still happens from time to time, but I've learnt how to hold it in until I can get to the toilet.

    Post-op I had no problem with either bowel or bladder (maybe "leak" once or twice from the rear end as lingering continuation of my bowel IC).

    I've been a DL all my life, so being 8 or so, and having a doc say to my mum "put him in nappies"... ah the lost opportunity!

    I had an opportunity to broach the fact I have to see an urologist in a few weeks to my sister recently. "What for?" "Oh, I leak". Her first comment was "is it your prostate?". When we were doing shopping, she pointed to some light pads, I said "no, I need better protection", and left it at that. I'm pretty sure she later saw a pullup in the bin that afternoon.

    My concern is that i am seeing bowel changes now too, with constipation. I'm really hoping my bowel issues dont recur, but I wouldn't be surprised if it does return. Being in nappies will certainly help that along, unfortunately.

    I'm also going through a quite stressful time in my life at the moment, as I'm in settlement period on purchasing a block of land, and signing contracts to have a house built on it. I'm coping with that stress, and getting some half decent sleep as a result, by regressing into AB at night (I did this when I had my gender reassignment surgery too - stress and a bit of "re-birth").

    I'm scared of the future, but at the same time, I'm weirdly partly ok with the thought of an outcome being IC. Wearing knickers again would be great, and I'll try to fight for that freedom, just not through taking drugs (I'm notorious for not taking medication), because I can't tolerate headaches and side effects that would affect my work.

    Sorry... wall of text there. Thoughts?

  2. #2

    Default

    We on this forum are not competent to give you any kind of diagnosis about what your problem is. You need to see a doctor and get possibly on-going medical help. Your urinary problems will need evaluation by a urologist and your bowel problems by a gastroenterologist. We’re here to offer you moral support. Welcome to the forum and good luck.

  3. #3

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    So is it your prostrate? You are at the right age to start developing this problem. It could maybe also be a case of shy bladder, and/or overflow incontinence too. Ultimately you'll need a real diagnosis though, so be open and honest with your urologist, with full disclosure too. The more he/she knows, the better your diagnosis will be.

    Also, the leg swelling is from being too inactive and sitting too long. Coupled with poor circulation in the legs, water/blood builds up. It is not related to incontinence or bladder problems.

    Set an alarm at your desk, and every hour just stand up for a minute, maybe walk around a little. Look into Dr.Schols diabettic/compression socks too. I have the same problem, and these help tons. (I'm not even close to diabetic either).

    I'm also on a water pill. They will make you pee a ton at first, this is expected. After a couple of days though, your peeing amount will return to normal. Staying on the pill will just make sure the water doesn't build back up again. You should reconsider taking it.

  4. #4

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    Hey, I'm sorry to hear about your problems. I'm sitting before the computer screen a lot as well and it's very frustrating to be honest. Sometimes I wonder, why I didn't choose a different career to pursue, really... At least, what was the game changer for me I started working out, jogging and doing lots of physical activities. When I was younger, I used to rest and chill in my home before my PC or TV - movies or video games, but now I just wouldn't bother anymore with it. I need to get out and get some fresh air, otherwise I'm getting frustrated. Not to mention, that even if you don't actually realize - sitting before the desk is much worse for your body than your mental health. Your body and eyes is what take the biggest blow from this lifestyle. Try going to gym or to do some cycling, whatever - but you need some physical activity to restore your body's balance.

  5. #5

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    Quote Originally Posted by Inconinmiss View Post
    We on this forum are not competent to give you any kind of diagnosis about what your problem is. You need to see a doctor and get possibly on-going medical help. Your urinary problems will need evaluation by a urologist and your bowel problems by a gastroenterologist. We’re here to offer you moral support. Welcome to the forum and good luck.
    Yes, completely understand that this isn't a medical forum, for medical diagnosis. I'm here for, as you said, moral support Slomo's response was great, and gave me stuff to think about.

    - - - Updated - - -



    Quote Originally Posted by Slomo View Post
    So is it your prostrate? You are at the right age to start developing this problem.
    Unknown at this stage, but I'm suspecting so, Will see once I go see the Urologist in a few weeks time.



    It could maybe also be a case of shy bladder, and/or overflow incontinence too. Ultimately you'll need a real diagnosis though, so be open and honest with your urologist, with full disclosure too. The more he/she knows, the better your diagnosis will be.
    I thought overflow was back-pressure into the kidneys?



    Also, the leg swelling is from being too inactive and sitting too long. Coupled with poor circulation in the legs, water/blood builds up. It is not related to incontinence or bladder problems.
    We initially thought heart problems (I have had a mild heart-attack around 2012), as swollen feet/legs is an indicator of heart/circulation problems too.

    I agree not related, but I brought it up because the tablets I was on seemed to be the start (or around the start) of my urine spotting. I cannot think of being on the toilet in my prior job (so 2+ years back) where I was spotting.



    Set an alarm at your desk, and every hour just stand up for a minute, maybe walk around a little.
    Yes, am always making attempts to get up and about. I work in a multifloor office, so walking up/down the Atrium stairs is good exercise.



    Look into Dr.Schols diabettic/compression socks too. I have the same problem, and these help tons. (I'm not even close to diabetic either).
    BINGO! My doc has been suggesting similar things.



    I'm also on a water pill. They will make you pee a ton at first, this is expected. After a couple of days though, your peeing amount will return to normal. Staying on the pill will just make sure the water doesn't build back up again. You should reconsider taking it.
    I decided to heed your advice, and took one of the "gentler" ones issued by my Dr. I spent all day Saturday peeing almost constantly, absolutely flooding nappies, and still had more on Saturday night (needing a 2am change), and Sunday morning.

    Sunday I went out in the morning, came home early afternoon, was so tired from the activity and daylight savings time change (lost an hour's sleep), that I crashed on the lounge. Woke up 3 hours later with a dripping wet nappy, and a wet lounge - first time ever I'd done something like that.

    End effect, I'm too afraid to take any more... but I'll raise this with the Urologist.

  6. #6

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    Quote Originally Posted by ozziebee View Post
    Yes, completely understand that this isn't a medical forum, for medical diagnosis. I'm here for, as you said, moral support Slomo's response was great, and gave me stuff to think about.

    - - - Updated - - -



    Unknown at this stage, but I'm suspecting so, Will see once I go see the Urologist in a few weeks time.



    I thought overflow was back-pressure into the kidneys?



    We initially thought heart problems (I have had a mild heart-attack around 2012), as swollen feet/legs is an indicator of heart/circulation problems too.

    I agree not related, but I brought it up because the tablets I was on seemed to be the start (or around the start) of my urine spotting. I cannot think of being on the toilet in my prior job (so 2+ years back) where I was spotting.



    Yes, am always making attempts to get up and about. I work in a multifloor office, so walking up/down the Atrium stairs is good exercise.



    BINGO! My doc has been suggesting similar things.



    I decided to heed your advice, and took one of the "gentler" ones issued by my Dr. I spent all day Saturday peeing almost constantly, absolutely flooding nappies, and still had more on Saturday night (needing a 2am change), and Sunday morning.

    Sunday I went out in the morning, came home early afternoon, was so tired from the activity and daylight savings time change (lost an hour's sleep), that I crashed on the lounge. Woke up 3 hours later with a dripping wet nappy, and a wet lounge - first time ever I'd done something like that.

    End effect, I'm too afraid to take any more... but I'll raise this with the Urologist.
    No, keep taking the water pills! You will reach a point where your body won't be able to just keep expelling water like that. Sooner than you think, your body WILL reach a water out equals water in point of equalibrilium.

    Just think of all that water your body has been expelling. Thats what has been causing your swelling, and is also adding undo strain to your heart (since it has to pump all that extra water). Keep taking them, you will reach equilibrium. If you try again later, then you'll be starting all over again, which I'm sure you'd rather not go through.

    And overflow incontinence is where the bladder over fills. Often because of a swollen prostrate, or malfunctioning sphincter. It increases the pressure in your bladder, which then has enough pressure to push past your bockage. And yes, the added pressure can and often does back up into the kidneys- which is obviously a bad thing.

  7. #7

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    An update - I went to see the Urologist yesterday.

    End result, stress IC, overactive bladder, maybe urethral strictures, and the doc wants me in day surgery to knock me out to do the camera up the urethra, and an examination to check for prostate issues.

    *sigh*

  8. #8

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    Quote Originally Posted by ozziebee View Post
    An update - I went to see the Urologist yesterday.

    End result, stress IC, overactive bladder, maybe urethral strictures, and the doc wants me in day surgery to knock me out to do the camera up the urethra, and an examination to check for prostate issues.

    *sigh*
    Interesting you urologist wants to knock you out for just a cystoscopy. The procedure is no more uncomfortable than having a catheter inserted. I've had it done a literal dozen times. And then some. Never came close to wishing I was out for just that. Plus they let you watch the camera feed.

    And if you believe in a god, then pray to him/her/it that it's not a stricture. I just spent 5-6 months with an emergency suprapubic catheter due to a stricture that had me fully blocked. Also just had it, along with my prostate, removed to try and open me back up again.

    It was necessary, but that's a procedure I'd wish done only to my enemies.

  9. #9

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    I see that you are on track to identifying your problem. While IC can be a "dream" for a DL, the reality can be not so much fun especially considering what underlying causes may be at work.

    One thing you mentioned is that you're nervous to wear nappies at work? I highly recommend tabbed over pull-ups since it is pretty easy to change without having to strip down below. I don't know if you're strictly into dresses and skirts--which would make changing a pull-up a bit easier but if you wear any sort of pants, pantyhose or anything else that has to come off to change a pull-up then tabbed is always easier to work with. I'm getting pretty quick with the standing change.

    I have been wearing tabbed nappies for a few months now and they are not particularly noticeable. Most people are not typically paying that sort of attention or they don't really care it seems. There are plenty of testimonies on here where people have been able to wear relatively thick diapers and the people around them are clueless. Also if you consider that they are less likely to leak--depending on brand--the tabbed nappies reign over all.

    I just throw my nappy on and then I put on boxers over mine but any basic cover will help muffle crinkling if needed. Add pants, shirt, and footwear and i'm ready to head out the door.

    - - - Updated - - -

    Add to the above the fact that you have a medical need. If people give you grief for something you have no control of you can enjoy shaming them.

    "Oh you like picking on people with a medical problem or disability? You must be a douche-bag of the first order. I bet it must make you feel like you actually have a large penis when you do that."

  10. #10

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    Quote Originally Posted by Slomo View Post
    Interesting you urologist wants to knock you out for just a cystoscopy. The procedure is no more uncomfortable than having a catheter inserted. I've had it done a literal dozen times. And then some. Never came close to wishing I was out for just that. Plus they let you watch the camera feed.

    And if you believe in a god, then pray to him/her/it that it's not a stricture. I just spent 5-6 months with an emergency suprapubic catheter due to a stricture that had me fully blocked. Also just had it, along with my prostate, removed to try and open me back up again.

    It was necessary, but that's a procedure I'd wish done only to my enemies.
    I think it's more the case of comfort. My hips and knees are stuffed (thanks, mum), and so I don't have a lot of flexibility. That, and I think the doc was pretty sure I had strictures, as doc could see I was quite "tight" down there, because after the cough test, doc immediately started talking surgery.

    There's also the complicating issue of how to examine a prostate when there's a neo-vagina in the way. When I was discussing this with my sister last night, she cracked up into fits of laughter ("ah, pussys always seem to get in the way!"). It's not an easy thing to solve. So I think doc thought it'd just be easier to do it under a GA in day surgery, using a paediatric cystoscope, and also mentioned possibly polyps being present too (after looking at an ultrasound result).

    Water off a ducks back, is how I treat these things. Lets get it done and move on.

    - - - Updated - - -



    Quote Originally Posted by PaddedDeist View Post
    I see that you are on track to identifying your problem. While IC can be a "dream" for a DL, the reality can be not so much fun especially considering what underlying causes may be at work.

    One thing you mentioned is that you're nervous to wear nappies at work?
    It's not the "wearing nappies to work" bit that scares me, but the "what do I do if I have to change at work" bit.

    Yes, there's a disabled toilet I can use, which is plenty clean and big enough. It's the practicalities of doing the change itself, standing up. I need to practice more to get it down pat (I usually change lying down on my bed). It's just all new routine that I have to slowly work through.



    Add to the above the fact that you have a medical need. If people give you grief for something you have no control of you can enjoy shaming them.
    Completely agree with you there!

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