Patient Perspective: Brad's Story

Brad's Story - Opening Up About Incontinence

My friends and I are close. Growing up in a small town, we’ve always been there for each other – to joke with, lean on in hard times, and to razz each other. We have a tight-knit group of 5 and they’ve been my chosen family since I was 12. It’s hard to believe so much time has passed since our early days, but here we all are.

I experienced incontinence after having my prostate removed in 2013. It wasn’t a fun thing to go through, and I certainly didn’t enjoy it, but the one thing that made it easier was that I knew to expect it – and that I wasn’t the only one.

You see, one of my buddies in our group, Joe, had also gone through something similar a few years back. He pulled me aside before surgery and told me that the worst thing that was going to happen was that I’d probably have some leaks – maybe a lot. It had happened to him for at least a year after his surgery and he said it was “hell “.

But he told me that the thing that had made it worse was not knowing it was coming, That was why he was talking to me – he wanted to me to know that I wasn’t alone. And, if it weren’t for his advice and pick-me-up talks, I don’t know how I would have gotten through that first year.

I’ve recovered well and don’t really experience the leaks anymore. But I still talk about it. Because that’s what we should all do with those we are close to. You never know who might benefit from your experience, or who might also go through something similar and just need a friend or to know they are not alone.

Don’t let your own embarrassment get in the way of opening up to your loved ones. I’m sure glad Joe didn’t.
 
Brad T., Auburn, AL

Patient Perspective: Ethan's Story. Overcoming Adult Bedwetting

Ethan's Story of Overcoming Adult Bedwetting

I am an adult bed wetter.  Those are hard words to say for a 52 year old man. I first started experiencing nighttime leaks when I was in my teens.  Just once in awhile. I’d laugh it off with my brother.  

But as I grew further into adulthood and it kept happening, I knew it was no longer a laughing matter. I found that the problem worsened when I went away to college and I took great pains to keep it hidden from my roommate.  I dared not buy protection from the stores near my campus for fear of someone seeing me, so I would drive an hour away just to pick up whatever absorbent pads I could find, which usually were not a great fit and didn’t do a lot to protect me.  I put blankets on my bed to absorb the leaks, but they didn’t help mask the odor.  

After college I got my own place, without roommates, so I wouldn’t have to worry so much about them finding out. I finally made the decision to speak to a doctor at age 30 – nearly 14 years after suffering from this problem on and off.  

While I still don’t know the reason I wet the bed, my doctor helped me find resources to manage the condition.  After trying several different absorbent products, I finally found one that fits well and is specific to nighttime use, so I rarely wake up anymore with leaks.  

I’ve also discovered that I’m not the only one out there with this problem – NAFC’s message boards have really helped me connect with others and sharing with them has been such a relief.  After years of embarrassment and isolation, I’m so thankful to have found help and to know that I’m not alone.

Ethan S., San Jose, CA

Patient Perspective: Larry's Story

Larry's Story - Learning to manage my incontinence

I’m 68 years old and I have incontinence. I’ve suffered a lot of setbacks over the years. I lost a finger in the army. I suffer from high blood pressure. And I have an old football injury that flares up regularly. But I have never suffered as much shame and humiliation as I have since I started experiencing incontinence.

It started innocently enough - a leak here and there. My doctor said it was due to prostate problems and gave me some medication to help. It did for a while, but then the leaks flared up again and I was forced to admit that this problem was not going away.

My first trip to the grocery store to purchase incontinence pads was a doozy. Standing there, looking at the wall of options was so intimidating. What do I choose? What size? How do I know it will fit? What if it doesn’t – can I return the bag? I had so many questions and no one to ask – after all, it’s not like men just talk about peeing their pants with each other all the time. Not to mention I kept looking over my shoulder to make sure that no one I knew saw me standing there. It would be so embarrassing to be “caught” in this situation.

When I finally got home, I started trying out the various absorbent products that I had purchased. I had bought 3 different types and gave each one a fair shot for a full day before making the call. Unfortunately none of them worked so I was back to the drawing board.

Fortunately, my wife found a company online that sold different products so I gave it a shot. I don’t know why I didn’t start with this option in the first place. They offered a free consultation so I gave them a call. The rep was so helpful and it was great having a guide to walk me through the different options, and also learn more about me, my condition and my lifestyle to help find something that would work best for me.

These days, I only use online services to order absorbent products. And, I’ve found great products that help me keep my leaks controlled, and my condition under wraps so no one is the wiser.

I still don’t love having incontinence, but it’s become such a normal part of life now that it doesn’t have the same hold on me as it once did. I didn’t envision this happening to me, but am happy to know that there are resources out there to help and products available that can make it more manageable. I feel free to live my life without fear of leaks and that is something to be really proud of.

Larry B., Seattle, WA

Patient Perspective: Nick's Story

Nick's Story - Incontinence After Prostate Removal

In August of 2015, I underwent surgery to have my prostate removed.  I had been diagnosed with prostate cancer the year before and my doctor had been closely observing me since then. 

When it seemed that my cancer was growing more quickly than he liked, he suggested surgery.  “Afterall”, he said, “you’re only 63.  You can still have a long life without worrying about this.”

So, after a lot of research, I went for it.  I knew there would be complications afterward, but incontinence was not something that I had anticipated being that big of a deal.  I thought I’d probably have to wear diapers for a couple of weeks and that would be the end of it. 

Boy was I wrong. 

Nine months later and I was still having a difficult time making it to the restroom.  It was so embarrassing as a man to face this problem. I couldn’t do the things I wanted to because I was scared of having an accident or a leak, and I felt ashamed of the bulky diapers that I was forced to constantly wear. 

I finally made an appointment with a surgeon in May to discuss a sling procedure and will be having the procedure done next month.  I’m hopeful that this will be a solution for me so that I can get on with my life and get back to doing the things that are important to me. 

Nick W., Houston, TX

Patient Perspective: Samuel's Story

Samuel's Story - Getting Help For Incontinence, Enlarged Prostate

How many of you men have incontinence? How many of you would admit if you did?  It’s a hard thing to come to terms with as a man. I know, because I’m one of the "lucky ones" who has been hit with this condition.

I had been noticing the need to use the bathroom more frequently for a while, but didn’t think much of it until I was on vacation with my wife a few years ago. We were in DC, walking around, being the typical tourists, when I suddenly felt the need to go. I wasn’t totally familiar with the area, and it was crowded, so it took me a while to find a bathroom. Unfortunately, it took me too long. I leaked – just a little bit, but enough to be able to tell. Luckily, I had a sweatshirt with me so I just wrapped it around my waist and told my wife we needed to head back to the hotel.

I was so embarrassed. She didn’t understand what had happened until we got back and saw that I needed to change my pants. And even then, it was hard for either of us to comprehend what had happened – I’m a grown man! I shouldn’t be wetting myself. We both brushed it off as a fluke and went on with the rest of our trip.

But a few weeks later at the gym, it happened again. And then again while doing some yard work at home. I started to feel like my body was betraying me. Why was this happening? I didn’t tell my wife that the problem had persisted until a few months later, when it was clear that I would need to get some help. She was so understanding and helpful. She did some research online to see what may be causing it and the treatment options available, helped me find a urologist to talk to, and even came with me to my appointment.

I’m happy to say that after talking to the doctor and getting treatment, I’m doing much better. Turns out I had an enlarged prostate so I’m on medication for that and it’s greatly reduced the need to run to the bathroom every five minutes, not to mention the leaks.

This has been a very humbling experience, but I’m glad that I opened up to my wife about it and that she was so understanding and helpful. I’m not sure I would have had the strength to get to a doctor about this had it not been for her pushing me along. Now, I’m leak free and am able to travel, workout and do pretty much what I want again without having to worry.

Samuel M., Cheyenne, WY

Patient Perspective: Molly's Story

Molly's Story Of Living With OAB

Overactive Bladder (OAB) has long been a problem for me.  I’ve had gradually increasing symptoms since the birth of my second daughter 20 years ago. 

The sudden urge to go can strike at any time, but I’ve learned ways to manage it – I know my triggers (doing the dishes!) and have learned the hard way that I just need to carry around an extra change of clothes. But still, my bladder leaks have always bothered me.

For years, my various doctors dismissed these symptoms as nothing to worry about.  “It happens to many women your age”, or “This type of thing happens as you get older”.  This type of response was always really frustrating to me, but I trusted my doctor and felt that they knew best so never really pressed the issue.

I was prescribed medication once, but never really liked the side effects and at the time didn’t know about any alternatives. 

I finally decided it was time to take matters into my own hands when I nearly missed my daughter getting her diploma at her high school graduation because I was in the bathroom.  I got to work doing my own research on treatment options for OAB – turns out there are a lot!  I spoke frankly with my doctor about my wishes, and got a referral to a urogynecologist, who set me up with a simple procedure that I didn’t even know existed a year ago. 

Now, I rarely experience symptoms and I can’t believe I accepted this condition as normal for so long. 

Ladies – take your health into your own hands!  Demand treatment from your doctor and express your concerns.  You know your body better than anyone else - be your own best advocate! OAB is NOT normal! Do something about it and change your life for the better!

Molly R., Montclair, NJ

Patient Perspective: Alice's Story

Alice's Story - Standing up to bladder leaks

It’s a funny thing, aging. I’m 68 years old, but I don’t feel any different than I did at 20. It happens so gradually really, but it feels like it comes out of nowhere. One day, you’re sitting there with your whole life ahead of you, and then suddenly, you’re walking along, you glance at your reflection and you see an old woman looking back at you. But you don’t feel any different. At least I didn’t. Until I started having bladder leaks.

My bladder leaks crept up on me just like getting old did. I had a few accidents here and there after kids, but didn’t start really noticing them regularly until I was in my late 50’s. I told myself I was too young to have this problem; that they weren’t that big of a deal and that I could manage it on my own.

The truth is, I was embarrassed. I didn’t want anyone to know about my leakage problem. I hid it well, or so I thought, but after a while, it started to weigh on me. Always packing a spare change of clothes, always scouting out the nearest bathroom in case of an emergency. It wasn’t until my daughter finally confronted me that I broke down.

I was visiting her at her house when I had an accident and had to change my pants. My daughter noticed and finally decided that enough was enough. She told me how she had watched me for years try to “hide” my problem, and urged me to get help. She also told me how she herself had talked with her doctor after her son was born and she had started experiencing leaks too. “The good news,” she said, “is that I’m doing so much better, and I hardly have any leaks at all anymore. I want that for you too, Mom.”

Talking to my daughter really opened up my eyes. She was right, and I couldn’t believe I had spent so long trying to hide the issue. Worse, I couldn’t believe she had gone through it too. If I had been open about it, maybe I could have offered some comfort to her, but instead she had had to deal with it on her own. I felt ashamed and embarrassed – not because of my bladder leaks, but because of my silence.

So, I decided to finally get help. After so many years of living with the problem, I didn’t realize how much it had taken over my life. And now that I’ve started taking medication for my bladder leaks, I am so much happier and freer.

I am 68, but the 20 year old still lives inside of me. And now, I can proudly say that I feel just as good today as I did back then.

Don’t wait to get help. Take the initiative to talk to your doctor and get the help you need. We can’t all do this alone and life is too short to let a day go by where this condition is controlling you. Suck up your pride, realize that we all need some help once in a while and just do it. I promise you, you’ll be so glad you did.

Alice B., San Jose, CA

Patient Perspective: Ellen's Story

Patient Perspective - Ellen's Story of Living With Incontinence

After the birth of my 2nd child, I began experiencing urinary incontinence.  I started leaking a bit here and there, and it only got worse as I got older. I assumed it was just a part of aging and that there was nothing I could do. And while the episodes were embarrassing, I was able to control and hide them pretty well by wearing protection and always keeping a close eye on the toilet. 
 
However, when my youngest was 15 years old, I had my first real bowel accident, and life as I knew it officially changed.  I began having more and more episodes, and eventually didn’t even want to leave the house because I was so terrified of having an accident.  I stopped seeing friends. I ordered groceries and most things I needed online.  I refused to go on dates with my husband.  There is something that feels just a little bit worse about having a bowel accident vs. having a bladder accident – it’s messier, smellier, much more apparent, and just so humiliating that you never want others to know it is something you are going through.  
 
I lived like this for six years before finally realizing that I wasn’t controlling my ABL, it was controlling me.  I got up the nerve to speak with my doctor and was able to have a surgery that helped alleviate many of my issues. 
 
All of this could not have come soon enough – my first granddaughter was born a year ago and to think that I may have missed out on that moment or all the wonderful ones that have followed makes me cringe. My only regret is that I didn’t do something about it sooner.
 
Ellen T., Atlanta, GA

Patient Perspective: Sally's Story

Sally's Story - Running and working out when you have incontinence

Once both my kids were in elementary school full time, I finally started working out. I became a runner, and devoted most mornings after they were in school to jogging through the neighborhood. I entered races and started doing small 5Ks, until I finally worked my way up to a full marathon last year. Things were going great and I was feeling strong and happy.

So, imagine my surprise, after years of being an avid runner, to suddenly start experiencing bladder leaks. My kids were not little anymore – they were both in high school at this point and I thought that I bypassed this type of problem that usually accompanies childbirth.

I spoke to my doctor, and found out that, to my surprise, this problem often accompanies serious runners too. Turns out that pounding the pavement every day isn’t so great for your pelvic floor. In fact, my doctor told me that up to 30% of female runners experience incontinence while running.

My doctor said there are lots of things that can weaken the pelvic floor over the years; childbirth, age, and surgeries can all take their toll (I unfortunately check all three boxes). Add to that running several miles per week, and I saw how my activity was contributing to the problem. 

I wasn't ready to give up running, and luckily my doctor didn't think I had to. While there are many therapies available (medication, surgery, exercise), he started me on a regimen of kegel exercises. I do them first thing in the morning, and 3 other times throughout the day.  He also recommended that I try some other behavioral tactics: limit my fluid intake right before my run, make sure to empty my bladder before running, and try planning a route that has some bathroom stops along the way. 

These changes have been helping me a lot and while there might come a time that I consider something like surgery, for now, it helps to know that I’m able to take matters into my own hands and manage my bladder leaks without stopping the activities I love. 

I'm glad I opened up about this condition and can continue my passion!

Sally S., Atlanta, GA

Patient Perspective: Allison's Story

Allison's Story - Beating Incontinence After Bladder Cancer 

I'm a survivor. I’ve lived through the joy (and scars) of giving birth to three boys, experienced two job layoffs, suffered through one divorce, and most recently, battled (and beat the shit out of) breast cancer. I didn’t really expect, after all that, to be so impacted by something as trivial as incontinence.

I first started having symptoms during my cancer treatments – my doctor said that it could sometimes be a side effect of chemo – but thought that it would go away once chemo was over. Unfortunately, I was wrong.

A year after completing treatment, I was still experiencing leakage.  At first, I just lived with it, thinking it would go away on it’s own. I packed extra underwear and experimented with various incontinence pads to help me manage.

I finally decided to talk to my doctor when it was clear that my leaky bladder wasn’t getting any better. My doctor had me make some diet adjustments, prescribed a medication to help stop the leaks, and sent me to a physical therapist to help me learn how to strengthen up my pelvic floor. 

I’ve had one year of regular PT sessions and I am happy to say that I rarely have leaks anymore (even after I stopped taking the medication). 

I’ve lived through a lot of setbacks in my life. But after surviving all of the hardships, I certainly wasn’t going to let something like incontinence control me. Life is just too short to live with something that’s so treatable.

Ladies – find the help if you need it.
 

Alison B., San Diego, CA

Patient Perspective: Merrell's Story

Patient Perspective: Merrell's Story, new mom, stress urinary incontinence

I gave birth to my first little bundle of joy a year ago.  My pregnancy was a dream – no morning sickness, no stretch marks - it was a total breeze, apart from the occasional leaks I had leading up to the birth. I had heard leaks were totally normal though, and figured that after baby came, everything would go back to the way it was before, so I didn’t really give them much thought.

After my baby was born, things changed dramatically. Suddenly, I was dealing with breastfeeding problems, sleepless nights, and a fussy baby that needed me 24-7. Not to mention those little leaks that I had before baby came - they were still lingering and I found myself changing my own pants almost as often as I was changing my baby. Every sneeze, laugh, and jump, caused me to leak and it really started to get me down. After all, I was in the middle of learning a new job – the most important job of my life, being a mom – and I couldn’t even get my own body to behave appropriately.

I finally talked to my doctor about it and he recommended physical therapy. I didn’t even know that was an option!  But, turns out that strengthening your core and  your pelvic floor muscles can really help control your bladder. This was great, because I wasn’t prepared to undergo surgery (not recommended if you’re planning on having more kids, like I am), and was really hoping to find a more natural option. So this seemed like a perfect fit for me.

My therapist started by reviewing my anatomy and showing me how all my muscles are connected. She also told me that I had diastasis recti, which is when your stomach muscles separate during pregnancy. This can really weaken your core, which affects your pelvic floor muscles too. She showed me exercises to help bring these muscles back together and strenghten my core. After baby, it’s also important to do your kegels to help get your strength back – my therapist told me that this would help me control those little leaks that I had when I placed stress on my bladder (like when I coughed, sneezed, or laughed).

It’s been 6 months since I started physical therapy and I’m happy to say that I’m leak free! I feel stronger and more in control of my body, and, more importantly, I feel better able to focus on and care for my growing baby.

I’m so happy I sought help. It makes me feel empowered, and better prepared to handle future pregnancies and babies.

New moms – don’t keep quite about this. Talk to your doctor and get help. There’s no need to suffer in silence. 

Merrell N., Austin, TX

Patient Perspective: Terry's Story

Patient Perspective - Terry's Story, Overactive Bladder

I feel a little funny writing this since I’ve never really suffered from what I would consider incontinence. Sure, I’ve had a few leaks before, but on a regular basis, I don’t. I suffer from something different – Overactive Bladder

It started off simply enough – I’d be doing something like washing the dishes, or coming home from work and I’d get a very sudden NEED to use the restroom.  Like…..right now. Most of the time I would make it, but a couple of times, I did wet myself a little

I laughed it off for years – after all, it’s certainly not life threatening, and just didn’t seem like too big of a deal to worry about.  Who goes to the doctor because they have to use the bathroom a lot? So, I went on with life, slowly adjusting my routine to account for my bladder, without really even realizing it.

It wasn’t until I was 56 when my husband finally asked me when I was going to talk to someone about it.  He’d noticed all of my attempts to account for my inconsistent bladder even if I hadn’t – requesting a closer table to the restroom at dinners, always making sure I emptied my bladder before we went out, booking the isle seat in a plane for easier bathroom access, and most of all, my absence – me always running off during any event to go. 

At first I didn’t understand what he meant – I was fine! But when he started pointing out how drastically I had changed, without even realizing it, I knew it was time to get help.

So, the next week I went to see my doctor. Turns out this is a condition a lot of people deal with. He gave me a list of foods to watch out for, prescribed some pelvic floor exercises, and set me up on a medication that seems to be doing its job. 

I can’t believe the positive effects it has had on my life - without even realizing it, I had adjusted my life to fit around my bladder and now that I don’t need to I can finally see how much I truly suffered for many years. If you deal with this condition – get help. It really will make a difference in your life, even if you can’t quite see that now.
 

Terry M., Fort Lauderdale, Fl

Patient Perspective: Audra's Story

Audra's Story of Living With Bladder Leaks

It took me 8 years to talk to my doctor about my bladder leaks. Allow me to let that sink in for a moment – EIGHT YEARS!!  

Think about how much happens during a span of eight years. For me, I had 2 children, switched jobs once, and had a cross country move in the middle of it all.

You’d think that with all of those life changes I’d be able to address something as simple as bladder leaks. I had a million and one reasons why I put it off for so long:  “It will heal after I recover from childbirth.” “It’s not so bad that I can’t manage it.” “I can just wear a pad.” “I’ll just bring along an extra set of clothes with me in the car just in case.” “I’m usually near a bathroom so should be able to make it most of the time.”

On and on the excuses went. But as the years went by, I got sick of just “dealing with it.” I finally made an appointment with my doctor and felt silly when I told him how long I had been suffering (needlessly).  He first set me up with a Physical Therapist to work on strengthening my pelvic floor, and also prescribed me a medication to take. The PT helped me a lot and after nearly 6 months of regular therapy, I was able to quit the medication all together. Now I just go for regular check ups, but keep up the exercises at home on my own.

I feel stronger and leak free, but most of all, I feel in control of my own life again. I’ll never let something like the fear of embarrassment prevent me from getting the medical attention I need again. 

Audra S., Missoula, MT

Sometimes, A New Perspective Can Make All The Difference

Stories from people living with incontinence

Incontinence. It’s not something we like to talk about, but it can happen to all of us. In fact, more than 25 million people live with some type of incontinence every day. And for most of those people, it takes them an average of about 6-7 years just to talk to their doctor about the problem.  That’s 6-7 years living with leaks. 6-7 years hiding accidents from loved ones. 6-7 years trying to find ways to cope with the condition. 6-7 years of letting the condition limit relationships with friends, family and work. And it’s 6-7 years of allowing incontinence to control you.

At NAFC, we hear from a lot of people with questions about their condition; how to manage it, how to stop it, and what products to try. But the one emotion that rings true in everyone is shame and embarrassment.  Women and men are so very ashamed of this condition that it keeps them from getting close to others. It causes them to avoid doing the things they once loved.  It prevents them from getting help for their bladder leaks. It keeps them from living a life without leaks.

If you’ve spent any time on our site, you know that we have tools to help you. That there are management options available and new alternatives coming out practically every day that you can try to overcome this condition. But for all the absorbent pads, devices, medications, exercises, and procedures that are out there, none of them will do a thing if you’re not willing to admit that you have this problem and that you need to do something about it.

Sometimes, the best motivation comes from other sufferers. So over the next two months, we’re rounding up stories from both women and men to help you see inside the lives of others like you. To help you know that you’re not alone. And to show you that once you find the courage to do something about incontinence, your life can be so much fuller. Many of our sufferers wish they had taken action much sooner. They wish they had talked with someone about the condition: their spouse, a friend, or their doctor.  We hope that in reading their stories, you’ll find the courage to speak up about incontinence and to do something about it.  

So please stay with us and hear from these brave women and men who have shared their stories. And who knows – maybe from them you’ll find the strength to be the next voice.

Throughout May, during Women’s Health Month, we’ll be sharing stories of women who have overcome incontinence. In June, we’ll share all of our stories from men. We’re excited you’re here, and can’t wait for you to hear what these folks have to say.

Patient Perspective: The Shame Of Incontinence Is Real

Patient Perspective: The Shame And Embarrassment Of Incontinence Is Real

When you hear about incontinence in the news, you always hear about the physical hardships – the leaking, needing to bring an extra change of clothes everywhere, keeping things clean. But unless you live with this condition, the one thing you don’t truly know about is the shame that accompanies it. Sure, everyone knows that it’s embarrassing to pee your pants as an adult, especially in public. But until you’ve actually been in that horror stricken moment, you really have no idea. 

Those of us who know this know that incontinence is more than just the occasional wet pants. It’s the hiding from your spouse so they don’t see that you wet yourself again. It’s the avoiding every social situation where you don’t know for sure a bathroom will be nearby. It’s feeling bad about yourself because you have this problem that you can’t control, even though it feels like you should be able to. It’s feeling like you’re the only adult with this problem. It’s all of that, plus the physical part too.

The truth is the emotional challenges of dealing with incontinence can be worse than the actual physical parts of the condition. But learning to manage it successfully can go a long way in easing the pain and embarrassment of the problem. NAFC is a great resource to those of us who live with incontinence. Take the time to explore the site and the many tools and tips they have to offer – it’s helped me a great deal and if you look hard enough you may just find the one tip or trick that takes you from embarrassment to freedom.

Bradley M., Nashville, TN

Patient Perspective: How Acknowledging My Pelvic Floor Changed My Life

How Acknowledging My Pelvic Floor Changed My Life. Pelvic Strengthening

I’ve experienced bladder leaks for about 5 years. After I had my second daughter, I started noticing leakage here and there. I always assumed it would go away, but it never did. I spent the first year attributing it all to childbirth, and let’s be honest, I didn’t really have the time to worry about myself much with a newborn baby. But, after my daughter’s first year, what I thought was a problem that would clear up on it’s own continued, and I began to take more notice. The leaks were more frequent, not less, and I started to feel ashamed about it. I’d never heard any of my friends talking about this side effect of motherhood – why was it happening to me?

I finally decided to visit my OB/Gyn to see what he recommended and he referred me to a Physical Therapist who solely focuses on the pelvic floor (yes! there really is such a thing!). The PT did a thorough evaluation and said the cause of my problem was due to a weakened pelvic floor that most likely occurred during childbirth.

I’ve never been what you would call athletic. I have a gym membership but don’t visit all that often. I sit at work all day, and get most of my exercise running around after my two girls. And God knows I could stand to lose a bit more of the baby weight.  So when my PT said that she was going to put me on a workout program to get things back in shape, I was a bit worried. But her workout was low intensity – lots of walking to get my weight down (which would help put less pressure on my bladder and pelvic floor) and simple exercises that would strengthen not just my pelvic floor, but my core muscles too.

After 3 months of doing the workout I had lost about 8 pounds and my stomach and glut muscles were noticeably more toned. I also was noticing much fewer leaks and was able to control my bladder much better than before. And after 6 months of performing the workout, the leaks had stopped all together.

I can’t tell you what a difference this simple workout routine has made in my life – not only do I feel stronger and more in control, but it’s given me more confidence in the ability to change my body both in look and in function. I’m so proud of myself and my only regret is that I didn’t do something sooner. Ladies – if you’re experiencing bladder leaks, visit a PT and get on a workout program! It will literally change your life. It did for me!

Kimberly V., Englewood, CO

Patient Perspective: Why I No Longer Mind Wearing Adult Diapers

Patient Perspective: Why I No Longer Mind Wearing Adult Diapers.

Patient Perspective: Why I No Longer Mind Wearing Adult Diapers.

I’m a 48-year old man, and I wear adult absorbent briefs. Every day, every night. The problem started when I was around 40. I had always had some nighttime bedwetting issues, but they were rare and something I managed for most of my life with waterproof bedding.

But after I turned 40, I noticed I was having more and more frequent episodes at night. I tried wearing absorbent pads, but they still leaked, causing me to have to change my bed sheets almost 4 times a week. Then the problem started happening during the day – I just couldn’t hold it in long enough to make it to the bathroom.

I saw three doctors, and none of them could find a specific diagnosis for me to explain why I was having this problem. I spent at least a year in denial – foregoing protection because I was embarrassed, but running to the bathroom more often than I wanted. I brought extra clothes with me to work and to social functions “just in case”, and soon, started to limit outings as much as I could because I couldn’t face the prospect of having an accident in front of my family and friends.

I finally realized that if I wanted any semblance of a normal life, I needed to use protection. I did my research and tried out several types of absorbent products to find something that worked for me. (Turns out I use absorbent briefs for day and night, although my nighttime briefs are thicker for extra protection.) 

It used to bother me that I had to wear “diapers” but now, I don’t think about it at all. I’d rather know I am protected vs. having an accident in public. If you struggle with bladder leakage, just bite the bullet and find a product that works for you. In the end, you’ll be so relieved to know that “you’re covered”, and most people won’t even know you are wearing extra protection.

Mike W., Pensacola, FL

Want to share your own story? Enter it here! You may remain anonymous and your story may help inspire others dealing with incontinence issues to seek help! 

But You Look So Good

A Guest Blog Post from Alice Thomas

In the early days of my MS I regularly heard ‘But, you look so good.’ While I have always been happy to have my good looks admired, rather than feeling like a true compliment, this statement often came across as one of disbelief that there could possibly be anything wrong with me.

I have even been skeptically asked ‘Are they sure you have MS? You don’t look sick.’ To which I am tempted to reply ‘You don’t look ignorant’. Because the question is inherently impudent and compels us to provide proof we actually have a disease. As patients, we don’t want pity but we do wish to be understood and we shouldn’t have to explain. So, what’s the answer?

One of the barriers to negating this confusion is that invisible symptoms can be difficult and even socially unacceptable to talk about. Amongst the many aspects of MS that aren’t obvious to the casual observer, bladder and bowel dysfunction are some of the most distressing. During my own looking so good days, this may have been the most troubling of my symptoms. I didn’t understand it so how could I talk about it and furthermore, why would I want to? It didn’t seem right to answer the old ‘But, you look so good?’ raised eyebrow with the truth that actually I was up all night doing laundry and crying because I’d peed the bed.

Adding to the frustration and confusion that looking good doesn’t necessarily equal feeling good, is that we as patients already question this ourselves and sometimes we are the most unforgiving accusers of all. We too can’t clearly see our own fatigue, nerve pain, numbness, muscle weakness or heat sensitivity. Consequently, we repeatedly set ourselves up for failure by not recognizing or respecting these unseen forces and then feel angry and defeated when we can’t accomplish what we’ve set out to do. We are the unwilling soldiers in our bodies’ civil war and it is a physical battle but also an emotional one. The physical struggle might be about the strength of our legs on any given day but the mental one is often an argument to simply will ourselves to do that which, based on how we look, we think we should be able. What we need to tell ourselves is the same thing we need to hear from others. MS is real. MS is hard.  

The answer to the dreaded ‘looking good’ statement isn’t to defensively list off every manifestation of the nasty disease that exists within us. You don’t owe anyone an explanation of something as intimate as your health. Nor should you have to prove your condition. But the question isn’t going away. Determining what is caring inquiry and what is idle curiosity can inform your response in these interactions. I’ve often found myself uncomfortably blurting out more than I wanted with someone who didn’t really care anyway. Rather than referencing my latest MRI, I’ve learned to point to some resources. Now when someone remarks on my striking countenance I say ‘Thanks, I inherited my mother’s flawless skin. MS is a complicated illness. If you want to know more, may I suggest checking out the MS Society website?’.

We are all curious from time to time. Let us act out of compassion and before we glibly assess the state of someone else’s health, of which we actually know nothing, pause a moment and instead of saying ‘but, you don’t look sick’ admit that we don’t really know much about the problem and ask how we could find out more.

Alice Thomas lives in Toronto with her husband and dog. She is an avid traveler, an arts enthusiast and a cheese fanatic. She is the author of the blog Tripping on Air - My trip through life with MS.  
Alice Thomas lives in Toronto with her husband and dog. She is an avid traveler, an arts enthusiast and a cheese fanatic. She is the author of the blog Tripping on Air - My trip through life with MS.  

Adult Bedwetting: Stories And Tips From Real People

Adult Bedwetting: Stories And Tips From Real People

Adult bedwetting. It’s a rarely talked about condition, but is one that affects many people.  In fact, NAFC receives more visits to the adult bedwetting pages than any other page on our site.  People struggle with this condition for all sorts of reasons – spinal cord injuries, neurological diseases, and even stress can cause bedwetting.  And sometimes there can be seemingly no cause at all, which makes it all the more frustrating to address. Most people who wet the bed are desperate for a solution.  They find it deeply embarrassing, and it greatly affects their quality of life, as they are constantly dealing with keeping things clean and worried about how it will affect current or future relationships.

The good news is there are ways to manage it.  We asked people who live with adult bedwetting to share their best tips and stories with us. And now, we’re sharing them with you.  If you’re longing to wake up dry in the morning, keep reading!

Don’t be afraid to talk to your doctor! 

“Don’t believe everything you read on the Internet. I have been wearing continence products for over a decade now – disposable underwear during the day, and fitted briefs at night. I’ve never had a Dr., RN, or Tech gasp in terror that one of their patients is wearing an incontinence garment, I’ve never had them ask to change me, mock me, or announce my issues to a crowded room.  Doctors are professionals, and they see incontinent people all the time. If you are having incontinence issues, you definitely need to see a Doctor, but don’t be nervous about it. If incontinence was that uncommon, they wouldn’t have aisles dedicated to it in every big box store across the US.”

If your doctor isn’t addressing your needs, find a new one!

“My first Urologist really wanted to focus on medication. I was all for that if it would make my problem go away, but it didn't and it had undesirable side effects. When the medication didn't work the Urologist referred me to a physical therapist and a psychologist, convinced my continence issues were the result of depression. They weren't, and that was when I opted to go with another Urologist. Not every Cop that pulls you over is going to give you a ticket, and not every Doctor is going to focus on what works for you. My second Doctor was focused on how it affected me and how to manage it, and it proved to be a more fruitful relationship. I also think RNs are great to talk to. The Dr. is supposed to be the expert, but in my experience Nurses tend to focus on reality and moving forward. Doctors tend to only focus on cures, even if that isn't a realistic goal.”

Don’t be afraid of adult absorbent products and find one that fits correctly!

“I initially went to what I now see as comical lengths to avoid dealing with my continence issues. I first tried the male guards, which are not designed for nighttime incontinence. When those proved futile I tried buying Goodnites (not designed for a grown man and very ill-fitting), figuring if the store clerk saw me buying bedwetting products designed for juveniles, she would assume that they were for a younger sibling. In retrospect, the clerk at a pharmacy or a grocery store is indifferent to what you buy. I think that is a big thing people initially get hung up on, and they needn’t. I typically buy continence supplies online these days, but no one cares what you are buying as long as you have the cash to pay for it. What is important is buying an incontinence product that works for you and you will use. At night I wear a fitted brief, which is an adult diaper. Initially it was very upsetting, but it gets better with time. Wearing a diaper keeps me dry, my bed dry, my girlfriend dry, and I get a good night’s sleep.  It took me a while to get over the hump of accepting that this was what I had to wear to bed, but eventually I got over it. Now it is just a thing I do at night, no different than brushing my teeth and flossing.”

“The best thing to do is accept that you have the condition and take steps to manage it. Look into products like mattress protectors, bed pads or even diapers. I'm 29 and know how frustrating it is. But I've accepted that diapers are my best option for me. Trust me, taking off a wet diaper in the morning is WAY better than having to change and launder sheets and clothes.” 

Don’t be scared to open up about your condition with your loved ones.

“Everyone is different, but I think that if you are in a relationship with someone and you have an illness or injury, that isn’t going to change things. I was straightforward with my girlfriend and we moved on together. We are still intimate. We still sleep together. We just keep my nighttime attire exclusive of our love life. “

Your attitude can make a huge difference!

“I used to "suffer" with bed wetting but once I became resigned to it, protected myself from its effects with good thick diapers, and changed my attitude about it, the suffering left. For many of us and maybe even you this is simply a condition in life to deal with. Let the suffering go and just accept it as a reality for yourself. You will be much happier and content.”

“I developed continence problems as the result of an unexpected side effect of surgery when I was 14 years old. I'm 74 now. So I've been dealing with these issues for 60 years. I've never been reliably dry at night since then. I was in diapers 24/7 for a couple of years after the surgery, but I managed to develop enough daytime control to go without a diaper except at night by the time I went to university. However, my incontinence increased again when I was in my forties; and I've been in diapers 24/7 since then. Incontinence is just a part of my life, and diapers are the kind of underpants that I wear. I do not "suffer"! I just manage my incontinence as a nuisance that isn't much worse than needing to wear glasses or going bald and not nearly as bad as my arthritis.”

“If your bedwetting is treatable, see the necessary doctors and get it treated. However, if it's chronic and not going to go away, acceptance and management with good diapers are the keys. "Suffering" is optional. I recommend just getting on with your life. Incontinence in general and bedwetting in particular are nuisances that need not ruin your life unless you let them. So don't let them do so.”

Find a support group!

“One of the best things that happened to me happened as a result of the NAFC forum. There was an incontinence panel put together, where individuals were part of a focus group and discussed how incontinence affected their life. I appreciate forums like this because you can discuss issues with other people facing them, but in the real world I always keep my private life private. That focus group meant a lot to me because I had a chance to talk with other people (even just on the phone) that had the same problem and the same concerns. I realized then that everyone worries about people noticing. Everyone worries about odor and stigma. And everyone (at least in the group) wears some sort of protection. That was actually a big weight of my chest being able to talk to people about it that were outside my extended family and the medical field, and if the opportunity presents itself again I highly encourage people to participate. The first 10 minutes are a little awkward, but after that people open up and you realize you aren't alone.”