Desiree has lived with urinary incontinence since age 6. She told me she wanted to share her story because her symptoms have played a big role in her self esteem, relationships and sex life.
Hear her story, with the help of voice actor Rosa Delgado, in the latest Girl Boner Radio episode! Stream it on Apple Podcasts, iHeartRadio, Spotify or below. Or read on for a lightly edited transcript.
“Sex and Urinary Incontinence: Desiree’s Story”
A lightly edited Girl Boner Radio episode transcript
Anonymous person #1. Let’s call her Jane:
“I had been laughing at something a coworker said…. [when].I am completely overtaken with gut-busting laughter, doubled over…while everything else in me is letting go. The air forced out of my lungs by my diaphragm in a whoosh…as the initial convulsion of joy runs its course through my body in such a close imitation to its cousin, grief. It is in this moment that urine escapes my bladder.”
“After the tremors of glee subside, I am left with a combination of endorphins, wet underwear, and, depending on what period of my life we are talking about, varying degrees of shame.
Waldo wrote this, for an essay that appeared in the Danish magazine Vertel:
“The biggest condition is not the disease, but how you look at it yourself. It has to be out of that shadowy corner. Potty creams for diaper rash are being touted for babies. Somewhere at the bottom of the label is in lower case: ‘Also for adults’. Why? I am incontinent, wear diapers and sometimes also suffer from irritated skin. And many adults with incontinence problems with me. Let us stop doing that mysteriously. Stopping as if it does not occur. ”
When I decided to cover sex and urinary incontinence here on the show, I searched online for true stories about it. I didn’t find much at all. Those excerpts I shared are from that search, from the Simon Foundation. I went through archives of message boards and archives for people who live with incontinence. At least in the public ones I found, there weren’t any messages about sex.
So I took it to my email list. In one of my latest surveys, I included an option to weigh in about a few different topics, including this urinary incontinence. An awesome woman named Desiree volunteered. We recently spoke about her experience, going back and forth through email. The voice you’ll hear for Desiree today is that of voice over artist Rosa Delgado. All of Desiree’s words are her own.
[a few bars of upbeat music]
So Desiree is in her late 20s. She told me she’s been physically disabled since age six, when a spinal cord injury from a tumor left her both paralyzed and incontinent.
I use a power chair and I now spend most of my days raising a puppy that I got after cancer treatment. He is my pandemic puppy.
Desiree said she wanted to share her experience with incontinence here, because it’s a big part of her self-esteem and sex life.
Her earliest memories of her symptoms involve diapers. She started wearing them around age 6. And while she said she’s a lot more aware of her bladder now, at the time she couldn’t feel it at all.
…it was hard to understand what incontinence was at that age… I think a doctor mentioned a surgery to my parents, but they refused because I was so young. I didn’t have a urologist until I was an adult, which is crazy. Maybe I was too young and nobody found it necessary to get a urologist for me.
I probably started to see it as a problem when I was a teenager and kept having accidents… I still remember going to my first party (and only party so far) and peeing my pants because I had so much alcohol. I was embarrassed when my friend took me home and the car seat was wet.
Some 15 million people in the US alone live with chronic urinary incontinence, and 85% of those folks are people with a vulva. And all types involve some amount of lack of control of the bladder, ranging from mild and occasional to debilitatingly severe.
There are four main types:
- Stress incontinence, when urine leaks when you exert pressure on your bladder by coughing, exercising, laughing, sneezing, or lifting something heavy.
- Urge incontinence, which causes sudden, intense urge to urinate followed by an involuntary loss of urine.
- Sexual stimulation brings on symptoms of this for some folks, so you might dribble urine with orgasm. That’s often from a combination of weak pelvic floor muscles and pressure on your bladder.
- Overflow incontinence, when you experience constant or frequent dribbling of urine
- And functional incontinence, when a mental or physical impairment–such as arthritis– keeps you from making it to the toilet in time
You can also experience more than one type, which is also known as mixed incontinence.
Urgent needs to urinate can also coincide with spasms, which is the case for Desiree.
I have bladder spasms that hurt…almost like having period cramps. If I leak, it is a lot. If I drink coffee, alcohol, eat too much sugar, or have a little chocolate, my bladder gets irritated and I am more likely to have accidents.
Desiree said she’s had to learn to make lifestyle adjustments to manage her symptoms. She switched to a coffee alternative, for example, and stays well hydrated with coconut water and herbal teas, since she doesn’t like regular water. Lifestyle changes like these often go along with medical treatments, like bladder training, pelvic floor exercises, medications or surgery.
And like all aspects of our health, especially those that involve the pelvis and bodily fluids, incontinence can impact sex and intimacy. Desiree told me she was really worried and embarrassed about her urinary symptoms when she started first having sex, a few years ago.
I don’t like telling people that I wear diapers or use a supra pubic catheter. I don’t want them to see me as a baby, an old person or an unsexy person…
The first time I had sex, I didn’t say anything about my incontinence and just ripped my diaper off. Guys don’t seem to care. They don’t ask questions when they are getting laid. [laugh]
Honestly, I still sometimes don’t say anything [about it] and just pull [my diaper] down when it’s time to have sex. I never had a guy ask me about it.
I never pee while having sex. (Thank goodness!). But I still get embarrassed talking about incontinence. I have been dating a guy for about 5 months and I still haven’t told him. It’s hard to bring it up.
Sex for me, got better over time. I feel like I have become more confident now that I know that I can’t pee during sex. I used to get a lot of UTIs but not anymore.
Desiree said she wishes more people realized how inconvenient urinary incontinence can be. It can stop a person from going on long roadtrips, she said, or from spending the night away from home or going anywhere that doesn’t have a nearby bathroom.
Nobody wants to be incontinent; as an adult, we like being in control of our bodily functions.
I asked Desiree what advice she would give to someone who’s struggling with urinary incontinence.
That’s a hard question because I have been incontinent for over 20 years and it still bothers me… I have learned that your diet can affect your bladder, so avoid your triggers if you can. There are pills and surgeries that might help, so talk to a urologist and find something that works for you.
I had surgery about seven months ago to get a special type of catheter that goes under my belly button. It’s supposed to be good for people who are paralyzed and sexually active because regular caterers get in the way.
As far as sex goes, she offered this:
If you are having a one night stand, you don’t need to worry. Most people don’t care or notice. If you are in a relationship, then maybe it’s time to bring it up.
She also wanted to debunk this related myth: that disabled people, who tend to be more prone to incontinence, are not sexual beings.
We definitely want sex. We get horny too. We are not scary or a burden. We are good at sex. We like sex, speaking mostly for myself.
Don’t be afraid to date people with disabilities. Ask questions and don’t make assumptions.
[a few bars of upbeat music]
As I was thinking about today’s episode, I did a bit of exploring into accessible sex toys and accessorits that can be helpful when you or a partner has a physical disability or chronic pain. Here are a few I recommend that folks with disabilities have suggested, too:
First the Liberator Wedge. This is basically a wedge-shaped, supportive pillow. It’s designed to help you ease into positions and reach those sexy angles. If you’re prone to back pain or stiffness, I highly recommend it.
There’s also the Fascinator Throw sex blanket by Liberator that Dr. Megan talked about recently, that can soak up bodily fluids, such as urine, to make clean up easier and bring some added peace of mind.
I also love the WeVibe Pivot Vibrating Cock Ring. What’s cool about this toy is you can control the vibration from your phone. It’s also really easy to keep in place, if you have trouble gripping small objects. And while it’s designed primarily to slip over a penis, you can slip it over a finger, too, for sexy buzz on most any body part.
Several disabled writers and reviewers have recommended Womanizer or Satisfyer toys, for folks with a vulva. They basically replicate the sensation of oral sex on a clit, with this cool suction technology.
For Cosmo, writer Hollie Anne-Brooks said, “If a dildo isn’t your style and you prefer something a little softer, the Satisfyer Pro-Traveller will feel like a bunch of people licking you up and practically carrying you to orgasm. “ (That imagery just makes me smile.) These toys are pretty easy to keep in place without using your hands, too.
Stream the full episode, which includes Dr. Megan Fleming’s Pleasure Pick of the Month, Yarlap, up above or on your favorite podcast app! Hint: Megan highly recommends Yarlap for treating or preventing urinary incontinence, as well as for stronger orgasms. Save $50 on Yarlap with code GB50.