Incontinence and Shame

“At the height of laughter, the universe is flung into a kaleidoscope of new possibilities.” – Jean Houston

Incontinence and Shame, Submitted by – Lianna

Introduction

I don’t remember the first time I felt shame for my incontinence, but I remember the last time. It was just over a year ago. I had been laughing at something a coworker said, though I can’t recall what it was that I thought was so funny. That’s when it happens, you see, only when the force of the humor is so strong that I am completely overtaken with gut-bursting laughter, doubled over, my body curving in on itself as if it were trying to hold on to something invisible, some last tether to solidity, while everything else in me is letting go. The is air forced out of my lungs by my diaphragm in a whoosh; every muscle in my face squeezed tight 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.

Childhood

I had no explanation for my incontinence as a child. Whenever it happened, I felt so incredibly alone and deeply ashamed. I never wanted to tell my parents when I peed, afraid they would be upset with me. I felt that it was somehow my fault. I was able to do everything else a girl of my age should be able to do, except control my bladder. I felt there was something inherently wrong with me; some innate badness. I did not have the words at the time to voice this distorted thought, or else surely I would have asked my parents for help. All I knew was that I felt defective every time it happened. If I had the language and awareness I have now, I would have reached out to my parents then. They could have helped me to understand that I had not failed them. They could have guided me to create tools to manage the effects of the incontinence when I was away from home. They could have taken me to see a doctor, who, even if she couldn’t help, could at least have given me the word “incontinence” to apply to my condition. This word from a trusted authority could have been a shield to protect myself from my own self-contempt and the disgust I anticipated from my peers if they were to have found out. But none of this happened. I was trapped in a prison of fear. And, like all fears, it was all the stronger because I did not realize it was there. I was too afraid of disappointing my parents to ask them for help. My fear prevented me from getting the comfort and guidance from the ones who could help me best. There was one exception to my silence: my older sister. I would sometimes tell her when I had an accident. She would faithfully check my pants to tell me how obvious the wet spot was or let me know if the jacket I had tied around my waste was covering it completely. Most importantly, she wouldn’t tell Mom and Dad. She was the only one I would allow to see my vulnerability and support me. But even her assistance was something I reserved for my most desperate moments, because it took a tremendous amount of courage to admit I had peed, even to my sister. Also, she couldn’t always be there to help.

 Adolescence

Creativity and resourcefulness were the silver lining to my compulsion to protect my secret. I became a master of hiding the accidents, because I could think of nothing worse than my peers witnessing my disgraceful weakness. I would often bring a sweatshirt or long-sleeved shirt with me on an outing, even if it was not cold, just so I could tie it around my waste to cover up the visual evidence. I would practice loosening the straps of my backpack to make sure that it would cover my butt from view. I would think of unique ways to stand or exit a room so that no one would see the back of me. One of my most poignant memories is from when I was twenty years old, old enough to have the language to address the shame and bring it out into the open in a way that would have eased my pain, but still too afraid and frozen into passivity. I was riding on a train with some friends and someone said something that set me off into so much laughter that I peed a fair amount onto the fabric seat. The familiar dread seeped in along with those uneasy thoughts about how I was going to hide my accident, while ruining the fun I’d been having at the same time. As we were exiting the train, one of the friends, who I did not know very well, set her hand on the seat I had occupied to steady herself, right on the wet spot where I had peed. I saw her hesitate, lift her hand and set it down again, as if confirming the wetness. I was humiliated. She did not mention it and neither did I. But for the rest of our trip, I was embarrassed to talk to her. She knows my secret, I thought. She must think I am gross and childish. If I could have gone back in time, I would have mentioned the wet seat to my friend before she had a chance to notice it herself. She probably would have felt sad to learn how deeply mortified I felt as a result of the accident. She probably would have reassured me that it was nothing to get distressed about, and helped put my mind at ease. But instead I kept silent and withdrawn, only to imagine the worst-case scenarios she might be thinking of me.

Recovery

My recovery from the shame of my body’s involuntary behavior has taken a long time to achieve and it has been a journey too in reclaiming my voice. When I was sixteen, I finally reached out and asked my parents if I could see a doctor about my condition. Allowing myself to hope that something could be done was a huge step, let alone finding the courage to finally ask for help. I learned that I had a legitimate medical condition called “urinary incontinence”. It actually had a name, which was a huge relief for me. The discovery took the responsibility off my shoulders, and allowed me to recognize that my body’s behavior was not my fault; it was not an inherent wrongness in me, but rather a condition I was born with.

The doctor told me the options were physical therapy and surgery. I chose physical therapy and learned how to do Kegel exercises to improve the muscle control of my pelvic floor. I have been doing these exercises ever since. They do not eliminate the problem but they do help lower the frequency of the accidents and the amount of urine that leaks. Putting to use this bodily tool was relatively easy compared to addressing the internal resources I needed to employ to heal my own self-dialogue. The first time I told a group of people about my incontinence was in a college class where we were asked to pick one aspect of our identities to share. After learning that identities could be invisible, I realized incontinence was a part of mine, even though I could go months without having an accident. At that moment I decided to bring it out of the shadows and claim it as part of me. It took a lot of courage to tell a room full of people about something I still held a lot of shame about, and yet, speaking my truth turned out to be a very cathartic experience. I was surprised to hear that another girl in the class had a younger sister with the same condition, which made me feel connected to something larger than myself. I started to wonder how many other people might be suffering silently in their own prisons of fear surrounding their incontinence, wondering too if they felt just as alone as I once did. It made me realize I wanted to share my stories with others in case I might be able to provide the knowledge or language that could be the key to them escaping their own, personal prisons.

As an adult I continue to find more tools to manage my incontinence. Since the greatest pains for me as a child were the feelings of isolation and dread, my favorite tool is a social one. I simply tell the people I am with that I have just peed my pants from laughing so hard. It is now a source of delight for me when I encounter a situation that my unique sense of humor finds so uproarious. I feel grateful to have so much enjoyment in my life. It can also be a sign that I have found someone whose sense of wit really aligns with my own to the point that it enhances our bonding experience. My release of urine is my body’s compliment to their comic artistry.

These simple tools might seem obvious to an outside observer, but they really feel revolutionary to me. They are devices that I could have been using since I was a kid, if only I had the language, the selfknowledge, and the courage to share my struggle and ask for assistance. My adult self is finally able to care for the child self in me, who couldn’t do so at the time, on her own. Over the years fear, shame, and guilt have at times over-shadowed my thoughts when it comes to my career, my health, and my relationships, and patterns of anxiety have is proportionately influenced my life going all the way back to my relationship with my incontinence. However, I am working to release my fear of disappointing people, as well overcoming those fears that have prevented me from taking care of my own feelings and needs. But even more important, I am learning to be increasingly gentle with myself and am having a kinder inner dialogue too. With the help of therapy, meditation, spirituality, supportive friends and family, and a lot of self-discovery, I am healing more and more every day.

Gratitude

I am now filled with appreciation for the potency of my laughter and I can see beauty in my incontinence. I am integrating this aspect of myself into my whole identity with expanding levels of compassion. There are so many benefits I receive from laughter including increased endorphins, exercise, pleasure, and strengthened connections in the form of shared joy with people around me. Maybe it is just that these gifts are so powerful that I am compelled to compensate with a release of something I usually hold tightly. There is the normal release of tension that comes with laughter. But for me, there is sometimes the release of a little bit of urine, too. I think it’s worth it.

exercise women

Viveve Completes Enrollment in Short-Term Feasibility Study for Stress Urinary Incontinence

Viveve Medical, Inc. (VIVE), a medical technology company focused on women’s intimate health, announced today that it has completed enrollment in its three-arm, three-month feasibility study to compare Viveve’s Cryogen-cooled Monopolar Radiofrequency (CMRF) treatment and a cryogen-only sham treatment to an inert sham treatment for the improvement of stress urinary incontinence (SUI) in women. The Investigational Testing Application (ITA) study, approved by the Canadian Ministry of Health, was initiated in January 2020. Read more.

Source: Yahoo Finance!, March 4, 2020

product approval introduction

Contura Nabs FDA Nod for Female Incontinence Device

Contura has earned FDA approval for an injectable hydrogel [Bulkamid] to treat stress urinary incontinence in women, according to a premarket approval order posted by the agency Monday. The permanently implanted device acts as a scaffold for cells to grow through, supporting the closing mechanism of the urethra for better control of urine.  Approval of the Bulkamid implant was based on a study of 228 women that showed 75% of those who got the device reported dryness or improvement in their symptoms. Read more.

Source: MedTechDive, February 4, 2020

women friends

Viveve Medical (VIVE) Announces Authorization to Initiate Short-Term Feasibility Study in Stress Urinary Incontinence from Canadian Ministry of Health

Viveve Medical, Inc. (NASDAQ: VIVE), a medical technology company focused on women’s intimate health, announced today that it has received approval of its Investigational Testing Application (ITA) from the Canadian Ministry of Health to conduct a three-arm, three-month feasibility study to compare Viveve’s cryogen-cooled monopolar radiofrequency (CMRF) treatment and a cryogen-only sham to an inert sham treatment for the improvement of stress urinary incontinence (SUI) in women. Read more.

Source: Street Insider, December 18, 2019

product approval introduction

FDA Approves New Drug for UTI, Two Devices for OAB/Incontinence

November 2019 proved to be a fruitful month for urology-specific FDA approvals, with the agency giving the green light to a new drug for complicated urinary tract infection, an implantable device for the treatment of overactive bladder/retention, and a digital product for strengthening of pelvic floor muscles and treatment of urinary incontinence in women.  The FDA approved cefiderocol (FETROJA) in patients 18 years of age or older who have limited or no alternative treatment options, for the treatment of complicated urinary tract infections (cUTI), including pyelonephritis, caused by the following: susceptible Gram-negative microorganisms: Escherichia coli, Klebsiella pneumoniae, Proteus mirabilis, Pseudomonas aeruginosa, and Enterobacter cloacae complex. Read more.

Source: Urology Times, December 4, 2019

ELITONE

Elidah Announces the Launch of ELITONE® – A New Non-Invasive Treatment for Women’s Incontinence

Elidah, Inc (https://elitone.com/), a woman-owned medical device company, today announced the launch of ELITONE®, the first and only patented medical device providing non-invasive treatment for stress urinary incontinence in women. ELITONE is the first product of its kind launched under a newly created FDA product category for non-invasive incontinence therapy. Stress urinary incontinence is the loss of bladder control when activities such as exercising, coughing, laughing or sneezing increase the internal pressure placed on the abdominal cavity and pelvic floor muscles. Read more.

Source: PRNewswire, August 20, 2019

exercise women

FemTech – Making strides for women

While EU Member States discuss the Health Technology Assessment proposal, an EU-wide research tool to support decision-making on health technologies and innovation in the “FemTech” sector (encompassing fertility, pregnancy and nursing care, women’s sexual wellness and e-health technologies) promises to revolutionise the treatment of pelvic floor dysfunctions for women across Europe and beyond.  Over 50 percent of women worldwide suffer from at least one of the following three pelvic floor dysfunctions: Stress urinary incontinence, faecal incontinence, and pelvic organ prolapse (POP).  Read more.

Source: The Parliament, July 23, 2019

business buildings

Rinovum Women’s Health Debuts Revolutionary Reusable Over-the-Counter Product Clinically Proven To Treat Light Bladder Leaks and Boost Women’s Confidence

Rinovum Women’s Health, the makers of the successful Stork® products for at-home conception has debuted a breakthrough reusable device, clinically proven to treat light bladder leaks that does not require a prescription, impacting the more than 15 million women in the U.S. who suffer from the embarrassing issue. The revolutionary product Revive™ is an FDA-cleared urethral support device designed to empower women and help them to take charge of their health by kicking stress urinary incontinence (SUI) to the curb. After successfully growing The Stork ®OTC, the first conception aid sold over-the-counter, Rinovum Women’s Health has made Revive available in nearly 5,000 retail locations nationwide and growing. Read more.

Source: BioSpace, June 24, 2019

product approval introduction

InControl Medical Wins FDA Clearance for Attain: The First Over-the-Counter, At-Home Device for the Treatment of Urinary and/or Fecal Incontinence in Women

InControl Medical wins FDA clearance for new Attain, the first over-the-counter (OTC) non-implantable muscle stimulator designed for at-home use to help treat the approximately 60 million women in the U.S. suffering with stress, urge, mixed urinary incontinence and/or bowel incontinence.  This is good news for all those affected by urinary and/or involuntary bowel leakage that can increase with age: 20% -30% of young women, 30%-40% of middle-aged women, and up to 50% of older women suffer from incontinence.  It’s time to talk about this taboo topic before diapers become the newest accessory in the Nike store. So, strengthen your calves and abs, but don’t forget to strengthen your pelvic floor muscles too, says Lauren Streicher, M.D., Medical Director of the Northwestern Medicine Center for Sexual Health and Menopause and Clinical Professor of Obstetrics and Gynecology at Northwestern University. All kidding aside, many of my patients who suffer with urinary incontinence, can also have leaky bowel, and truly suffer in silence and embarrassment. Post-partum, anal or rectal cancer, and the natural aging process can cause incontinence. Thankfully, many patients respond well to pelvic-floor electrical stimulation and biofeedback as a first-line treatment, before considering surgery or medication. Attain is a small, painless, easy to use medical device for women to self-treat in the privacy of their own home, reducing or eliminating the need for pads or diapers. Read more.

Source: Global Banking & Finance Review, March 26, 2019

women friends

Behavioral Therapy Superior to Drugs Alone for Urinary Incontinence

Behavioral therapies relieve stress, urgency, and mixed urinary incontinence (UI) more effectively than drug monotherapies in nonpregnant women.  In a new systematic review and network meta-analysis (NMA) of 84 randomized trials published in theAnnals of Internal Medicine, most interventions including combination therapies improved or resolved women’s symptoms better than no treatment, whether sham or watchful waiting, Ethan Balk, MD, MPH, of Brown University in Providence, Rhode Island, and colleagues reported. Hormones and periurethral bulking agents appeared less than effective, however. Read more.

Source: Renal & Urology News, March 20, 2019