My Experience with Urinary Incontinence
I don’t know about you, but I get so tired of needing to pee, along with not being able to hold it. Sometimes it just runs out ... I feel like a toddler not yet potty-trained. This is so frustrating!
Not only do I not know when or how much pee is going to come out, I don't know what I will be doing or where I will be. It could be at home, by myself, or out in public. All of this can take a very large mental and emotional toll.
Seeing a urologist
I know the first time I had to see a urologist because of incontinence, I felt a bit embarrassed. Luckily, I got over that quickly.
Although for some it could take a little more time - that’s okay. Before talking with the urologist, I had to tell my primary doctor so she could refer me. Of course, my husband already knew. He went with me to my appointment. I was glad to have him there for support.
The urologist said I would probably need daily self-catheterization or assisted catheterization. At which point my husband joyfully volunteered to use the garden hose! Thank goodness catheterization was never needed! I regained control and we decided to wait and see.
At this point, we did not know I had myasthenia gravis (MG). That would take almost 20 more years for a diagnosis. I was still told by doctors that I had multiple sclerosis.
Having an open discussion
There are all kinds of questions. Which ones work the best? When and how do I decide to use diapers or pads? Do I just go to a store and get them off the shelf? ... Or do I order incontinence supplies and have them ship directly to me, discreetly.
To me, this second option keeps us from having an open and honest discussion about urinary incontinence. Not that there is anything wrong with having them shipped. But it adds to the feeling of being alone and guarding our secret. It leaves us to suffer by ourselves.
Society tells us it is something to be ashamed of ... like it is our fault. For everyone that needs diapers or pads, no matter the reason, it is not your fault.
Creating a safe space
There is still no easy answer for when to start using diapers or pads, which brands to use (I have found they do vary greatly), or how to get them.
I go to the store. The first time I bought diapers, my husband was with me. He rushed ahead to pick them out. Then while putting them in the cart, he told me the pretty ones were for me. Those were his words!
He knew I was feeling humiliated because of the stigma. He was trying to help me because I had tears in my eyes until then. Just that support made a big difference. But It would not have been possible without open conversations, sharing our experiences, along with our support for each other.
This could remain a heavy mental and emotional toll when it does not have to be for many with myasthenia gravis and other urinary incontinence problems. So, let’s be a safe place to talk about this (even if it is not due to MG!)
Did you know what myasthenia gravis was prior to your diagnosis?