How I Manage Incontinence Caused by Ehlers Danlos Syndrome

This is a collaborative health stories. Blythe from the sustainable spoonie has teamed up with incontinence experts Hartman Direct to share her journey with incontinence.

When was the last time you heard a 21 year old woman talk about incontinence?

I assume probably never.

Unfortunately, for many of us with Ehlers Danlos Syndrome, an inherited connective tissue disorder, incontinence is a common struggle from childhood.

Just like every kid, I LOVED trampolines. I never had a big enough yard to have one of my own, but anytime I went to a friend’s house, I would head straight for the tramp.

I remember one experience very vividly; I was at my first party in middle school, and I had to go inside out of embarrassment after almost completely wetting my pants while jumping with my friends. Thankfully, I was the only one to notice and caught it in time before it was visible from the outside. After that experience, though, I avoided trampolines at all costs!

I wish I had known then what I do now! I know my condition and body a little better now, so my incontinence is fairly well controlled. Here are three things that I incorporate into my routine to manage incontinence caused by EDS.

1. Bladder-Retraining Program

There are two main types of incontinence: stress incontinence and urge incontinence. Stress incontinence occurs while sneezing, coughing, or jumping on a trampoline. Urge incontinence occurs after feeling a sudden and strong urge to use the bathroom. I feel this mainly when standing up after resting, while sleeping, or if I wash the dishes or hear water running. Retraining the bladder helps with urge incontinence specifically.

To start a bladder-retraining program, follow a set schedule of using the bathroom with the goal of gradually increasing the time between trips. Start with an easy schedule to follow, like using the bathroom every two hours (or less depending on your situation).

Every few days, increase that time by 5-10 minutes until you can wait at least 3-4 hours between trips. You will feel the urge to go each time you increase your wait time, but you can use the rest of the tips below to help you last longer between trips. It will gradually get easier and easier as your muscles get stronger!

2. Pelvic Floor Exercises

Before I could start strengthening my pelvic floor muscles, I first had to learn how to relax them. Because Ehlers Danlos Syndrome causes joint laxity, the muscles continually tighten to support the stretchy joints. This can also affect our pelvic floor muscles, and trying to strengthen them before loosening them can cause extra pain.

A few ways to relax the pelvic floor muscles are diaphragmatic breathing, heat, stretching, and massage. However, those with EDS need to be especially careful to stretch inside a safe range of motion, and it’s important to consult with your doctor prior to beginning a new regimen.

Once you can relax your pelvic floor muscles on cue, you are ready to begin exercises to strengthen them. Strengthening these muscles will increase your ability to hold your bladder and can greatly reduce the effects of stress incontinence. A strong pelvic floor eliminates the fear of coughing or sneezing, and for me, it allowed me to try the trampoline again!

Pelvic floor exercises are unnoticeable to everyone else around you. For those with Ehlers Danlos Syndrome, it’s best to spread the exercises out throughout the day instead of doing them all at once to avoid muscle fatigue. Try doing a few exercises at stop lights, while waiting in line for a prescription, or even at your desk at work! If you’re not sure how to begin, this video resource by Hartmann Direct will guide you to make sure you are doing the exercises correctly.

3. Biofeedback

After a while of following a bladder-retraining program, the urges to use the bathroom should become fewer and fewer, and pairing it with strengthening the pelvic floor should relieve many incontinence issues.

Some people, like me, are completely unable to tell when their muscles are relaxed or contracted. In this case, working with a professional on biofeedback can be incredibly useful. In biofeedback therapy, painless electrodes are placed around the pelvic muscles, and the muscle activity is shown on a TV screen. You can see and hear every time you contract or relax your pelvic floor muscles.

As embarrassing as it is to talk about (or even read about sometimes), I hope that I can offer some words of advice and encouragement to others like me! There are so many more of us than we realize and I hope you find these tips useful!