www.incontinentsupport.org

Hi all. Im glad that I found this site full of people have similar problems to myself. Not feeling quite so alone is very important for the likes of us.

I am a 39yo transgendered woman that has become double incontinent over the past couple of years. My first problems developed about 2 months after I was dropped from Medicaid 2.5 years ago. I was living with my (now ex) girlfriend and was sleeping in the spare bedroom due to there being too many dogs in the bed and not having had sex since about a year prior. It was complicated.

I started wetting the bed in the spare bedroom a couple of nights a week which gradually escalated until it was happening every night. At around 2-3 nights per week I started wearing diapers to bed so I wouldnt constantly be doing laundry. I would always go to bed after her and wake up before so that she wouldn't find out that I was having a problem. She was in the process of losing her Mom to cancer (which she finally succumbed to over a year ago) and I didnt want to give her more to worry about.

My work plan that I was eligible for I could not afford and without Medicaid I would have had to pay for everything out of pocket. I already have it on record that Im trans and didnt want to see a doctor about the incontinence for fear of yet another 'pre-existing condition'.

Fast forward to about 6 months ago when I started having daytime urinary accidents as well as worsening bowel control. I had already broken up with my GF and moved closer to my family. It was about that time that I turned to diapers 24/7 and have been happy since I don't have to worry about wet or soiled sheets anymore. My parents became concerned because they hadn't seen me in quite some time and began asking if I was OK. I pushed them off for awhile until I broke down and told them what was going on. They have been incredibly supportive but were sad that I didnt tell them sooner.

I have finally gotten a raise and can afford medical insurance, so I hope to be seeing a doctor in a few weeks to see just what in the hell is going on with me. In the meantime, Im maintaining a positive attitude and am hoping that whatever the incontinence stems from isnt terminal.

Welcome to the forum Shanazon.

I know when my incontinence become progressively worse I was catastrophizing the worst outcome and couldn't bring myself to read or watch anything with the 'big C'' word in it. It was a horrible couple of months. I had a full blood work and check up done by my GP without telling her about my IC issues. I was too embarrassed only being 27 at the time. It all came back clear. I put it down to being on the atypical antipsychotic Olanzapine at the time as that can cause enuresis and daytime IC issue and I was on a strong dose. I purchased pads to manage and have done ever since. That was 6 years ago. My care team know about my IC issues and I'm managing okay. But get checked out, it's horrible worrying.

Hi Shanazon,
Welcome! If you are in the US, now is the time to sign up for the ACA. Sign-up is between Nov 1 and Dec 15. It is much more affordable, and has no "pre-existing" weasel clauses. Click here for more information.

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- Tom

My plan is already set up through work now. Im just waiting for my insurance card to show up in the mail.

Hey welcome. I'm a 41yo trans guy with urinary and rarely bowel incontinence. Mine stems from an accident that caused a paralyzed neurogenic bladder (and I'm now physically disabled). I had to go through a few different doctors to find one who knew something about trans stuff. One doctor was just fascinated and its all he talked about. I was like can we deal with the issue at hand?

You can check with your insurance cause they might cover the cost of diapers with a prescription. I'm on DC Medicaid and they cover premium diapers partially.

Good luck and again welcome

I use dry 24/7s as they have me covered in pretty much every situation. I stopped taking my hormones over a year ago because I thought that it might have been making my IC worse. Now that Im 24/7 and am going to have coverage shortly I'd like to get back on them ASAP. The longer I'm off of hormones, the further away from 'home' I feel. :-/

Welcome, and fingers crossed that you find the answers you need!

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When you arise in the morning, think of what a precious privilege it is to be alive - to breathe, to think, to enjoy, to love.

Marcus Aurelius

Add my welcome to those above. There is a downside to having, what for medical professionals, is a fascinating medical condition. They seem more interested in learning about our condition(s) than helping us manage them. Keep us informed. I'm sure you will have many valuable insights for the rest of us.

Howdy Shanazon

Welcome to our little family on this forum.
Just remember two things, you are not alone and the only stupid question is the one that's not asked.
So feel free to ask away and to chime in anytime. Im sure you will have some great experiences to share.


Schoppy

It's nice to have genuine people sharing their experiences with IC. The more I read, it seems like no two IC cases are the same and a lot of the time doctors have no clue as to why it's even happening.

Even after this short(ish) time Im ok with being IC and don't want to seek medications that seem to have nasty side effects or extremely invasive surgeries that would not only be costly, but would most likely not work anyway.