I should start by clarifying that if I’m upset with any part of my body (referring to it as a bitch), it would be my brain, since my neurological disease has been wreaking havoc in different parts of my body for a long time. I’m writing this in case there is someone out there that is dealing with some of the same issues… maybe knowing someone else feels your pain can be comforting.
I have written about my bladder issues for many years. I Really Need to Pee! was written way back in April 2012, and SomeONE with MS talks a lot about the invisible symptoms living with daily bladder inconveniences. My symptoms were initially urinary dysfunction/retention, which meant I wasn’t able to empty my bladder completely, so I’d end up with countless bladder and kidney infections.
After a few failed attempts to “dilate my urethra”, and many years of having to self-catheterize, I had surgery in 2005 where an implant (a pacemaker-like device) was effective in helping my MS brain send signals to tell my bladder to empty. It helped me for many years, but bladder issues have been prevalent in my journey with MS for as long as I can remember. Since that initial surgery 11 years ago, I’ve had four more to replace it or to change the battery.
Last year I started having a different kind of problem with my bladder. The technical term is Overactive Bladder (OAB). Here’s what WebMD says about it:
What is Overactive Bladder?
“How often do you usually use the bathroom daily? Is it more than seven or eight times — and you can’t wait? Are you getting up more than once or twice a night to go? Do your trips to the bathroom cause problems with your job, social life, or relationships? You may have overactive bladder.”
YES to all of the above! The way I describe it is that I always feel like my bladder is full, so I’m in the bathroom often (roughly 20 times in a 24 hour period), with less than a couple of tablespoons trickling out. Besides this being extremely inconvenient, it’s uncomfortable and can cause retention – which often leads to me having to self- catheterize (no, you don’t get used to it). Imagine trying to plan a day at the beach or a baseball game – with the anxiety of needing to be sure there is a bathroom close by. “What if I can’t go and need to use a catheter? I’m sure the bathrooms are not sterile enough.” This is just one fear.
Working that requires traveling by airplane is awful. I try to get an aisle seat whenever possible. But if I get stuck sitting in the center or by the window and my neighbor falls asleep with his/her tray table down… I start to panic and feel like my bladder is going to burst (it won’t, but it sure feels like it). Traveling long distances in the car is an issue as well. I make plenty of pit stops, and if I happen to be stuck in traffic… well, you can imagine.
LiveScience says a healthy adult bladder can hold up to 16 ounces (2 cups) of urine comfortably during the day, with the average person urinating 5-6 times a day, and about four cups (800mls) at night, according to the National Institutes of Health. Nerves in the bladder tell you when it is time to empty it. The sensation becomes stronger as the bladder continues to fill and reaches its limit. Problems in the urinary system can be caused by illness, injury or aging.
I’ve been getting Heparin Instillations in my urologist’s office once a week for about a month. A catheter is placed inside my urethra and my bladder is emptied completely. My doctor then inserts a cocktail of heparin and lidocaine to try to numb my overactive bladder for at least a day, sometimes longer. I do my best to hold it as long as I can so the medicine can coat my bladder, which gives me a little break from the pain of always feeling like I have to go.
I went last week but my urine tested positive for an infection, so I was sent home with strong antibiotics and no heparin. I didn’t get the little break I was hoping for. Fingers crossed for this Thursday!
Botox for Your OAB
Botox isn’t just for your forehead anymore. Doctors inject the drug directly into various places in the bladder muscle. That partially paralyzes it to ease overactivity, but leaves enough control so you can still go. Just as with wrinkles, the Botox effect doesn’t last forever. I had my first Botox surgery in July with no improvement. I’m scheduled for a second surgery in October with an increase in the amount of medicine (Botox) to be injected. As with most therapies, it works for some and not for others. I will try again, with the hope that I will see some results.
It’s hard to explain this condition to people, and since it’s one of my many invisible symptoms of MS, I end up isolating myself. If I’m asked to go to a concert or a play or a party – I think about it for a second and decline, or accept but ultimately back out. It messes with me physically, but also emotionally, in a much bigger way than I ever realized. It’s so overwhelming that I honestly think it’s easier just to stay home – so I can go to the bathroom as often as I need to, and not limit the amount of water I drink. I have kept good friends away (you know who you are, and I’m sorry), just so they won’t have to see that I’m struggling right now. As I’ve said before, it’s easier to deal with it on my own, but it’s taking a toll. There have been days I’ve wanted to end all of this pain and suffering and have urostomy surgery; which is when a permanent bag collects my urine and hangs on the lower part of my stomach, (sexy, huh?). Apparently they often remove the bladder since it isn’t necessary anymore. The more I read about it, the more I hope and pray something will work for me soon.
I’m really hoping the next time I write, it will be to let you know that I’m feeling better and that something is working. I have faith, hope and love in my life… I refuse to believe this is God’s plan for me forever, it’s just a very long, rough bump in my road.
With love and hope,
Tricia
Oh sweetheart…I understand and think of you often! Know that you are of the strongest women I know in my crazy MS life! What I find to be the hardest is letting people down, with “Oh I would love to go to the movies, but I better not” , “oh I would love to go to the Lake, but I better stay home”!!! Damnit it’s frustrating as hell but there is always a but. This summer I bought a swimsuit went to the pool swam with my youngest boy, my friends with their kids…had a blast! Next couple days couldn’t walk or talk! Damned if you do damned if you don’t! Lots of love your way! Love and laughter Angela Robison
I don’t have MS, but I do have a history of kidney stones, and always seem to have a little “tickle” going on down there. This causes two problems: one; I tend to have an overactive bladder during the day (so sometimes have to RUN to the bathroom at work) and two; the super fun one – my brain has had to “turn down” the “urgency response” at night so that I can actually sleep without having to go to the bathroom every five minutes. So… Sometimes I wet the bed. Super fun thing for an adult human to have to deal with. The bladder can, truly, be a bitch.
Love you my dear friend. Praying and praying and praying.
Love you Tricia! You have always been such an example of strength through adversity through all of this you have endoured. Praying for healing, comfort and peace! I do isolation really well these days. We should do it together.
Love, Kim
You are a fighter and a believer. That combination will carry you through these rough times. As you say, God’s plan will smooth out your road. Prayers for you daily. I think it is time for them to work.
Think of you often. You are the bravest person I know! Love you!
I have MS as well and my bladder problems were my first symptom and have continued to be my symptom the doesn’t go away. I lived in diapers for over a year. I wet them at night, during the day if I was out I’d wet them all day long. Just as my son was being potty trained, I made the transition from not leaving the house to diapers. It was horrible but I was thankful the adult diapers existed. At least I could leave the house.
I then was hooked up with an incredible urologist who did Botox mostly for people with MS and spinal cord injuries (I have lesions in my thoracic spine as well as everywhere else!). Knowing how severe my problem was, we went with a high dose of Botox right off the bat. Just insert lidocaine through a catheter, let it freeze me up for a good half hour, then they go in and inject the Botox. It took a few days to work and then BAM! Like magic, my OAB was gone! I actually couldn’t feel at all when I had to go and couldn’t go no matter how full my bladder was. I got good at self cathing and despite one couple week long episode where I traumatized my poor urethra somehow (blood, UTIs… Fun!), I was still SO happy to be out of diapers! Once that problem healed I was fine and I’m an expert at cathing myself now. I have a prescription for the drug Monurol (fosfomycin) which I have unlimited refills for from my urologist. It’s an antibiotic you can take one time and it lasts at least a week, I can usually go at least two weeks before I feel a UTI coming on. I figure it’s just part of having to cath.
So yeah! I’m happy even though when I tell people my story they don’t get how I could be! Once you’re in diapers for so long, your perspective changes a lot, haha. I’m currently going 6 months between Botox courses but at one point I was going every three months. I hope this next round works for you as it has for me. If you can handle cathing, tell them to go heavy on the dose of Botox. I told my urologist I didn’t care if I had to cath, I just didn’t ever want that horrible urge problem back again. They try to be conservative on the dosing so you won’t have to cath but I think it’s to be expected with those of us who not only have OAV but retention issues as well (which I had before Botox as well, just like you).
Good luck!!
Botox was the greatest thing since sliced bread for me! It helped tremendously with my OAB. I wish I had known about it sooner! I was having to take at least two changes of lower clothing despite wearing the dreaded Poise Pad and Poise Pad type pull-ups. I was losing my bladder at the most inconvenient times despite going on a regular schedule and limiting my fluid intake. It was horribly embarrassing and really became difficult to try and plan outings with friends and try and work too. I have also had to self-cath after one injection period where the doctor
Upped the dosage. I can tell you that I would much rather self-cath (and No you never do get used to doing it) than have to deal with my extremely overactive bladder and having continual accidents where despite the pad and diaper, I was still having to change clothing.
I am finding that after being on the Botox treatments for almost 3 years that they are not lasting as long. I am hoping on my next visit that he will up the dosage. I can only hope that they find something else that can help with this issue that many of us that deal with MS have. Hang in there! We all are like snowflakes and have different values of some of the same symptoms or sometimes have very different symptoms. I have been following you and your strength in dealing with your MS since my sister-in-law gave me your name and website! I have learned much through your postings and know you are a strong and incredible woman!
So sorry to hear what you have been through. I hope things are better for you now?
May I ask, were bladder symptoms the first of your MS symptoms?
Hi Paul,
No, my first symptoms when I was 13 were vision problems. The bladder issues didn’t rear their ugly head until I was about 30. Thanks for your constant support and all the nice comments. I think of you often and keep you in my prayers.