Disclaimer: This post was written to share my experience of living with bladder urgency and pain. I am not a doctor and it is to be used for informational use only. Any actions you take from the content of this post, you are doing so at your own risk and I am not responsible for any negative outcomes.
When you have Spina Bifida, it is common to have bladder and bowel incontinence because, a lot of the time, these muscles don’t work properly, and it is more difficult to go to the bathroom. Bladder issues are nothing new to me and are something I have dealt with my whole life, but when things change and you start to experience pain and urgency, it’s hard to manage. I have been living with bladder pain and urgency for about eight years, which I was forced to ignore because I had hip replacement surgery and needed to focus on improving my strength. When I first started experiencing bladder issues, it wasn’t that bad and most days I barely noticed them, but over time it has gotten worse and is now barely manageable. Over the last couple of months, I have been going to the doctor and being treated for pain and urgency because my bladder issues have gotten so bad I feel like I can’t do anything without knowing where the toilet is. Bladder issues can be hard to manage when you have a disability because there are a lot of things you can’t control, but you can get ahead them with a few lifestyle changes until you know what is causing them. What shouldn’t you do if you have bladder pain and urgency? In this post, I am sharing what I am not doing because of my bladder issues.
Do not dehydrate yourself- When you are experiencing a lot of leaking, pain, and urgency like I am, sometimes people think the solution is to not drink water. It is true that if you drink less, you will pee less, but depriving yourself of liquid is not the solution to your bladder issues and may make your pain worse. Dehydration increases your risk of infection, which will cause you more pain and make everything worse. When I first started experiencing more urgency and pain, I thought that my problem would go away by drinking less water, but I quickly learned that didn’t do anything and the only thing I achieved with that was constipation and more migraine attacks. If you are in a situation where you don’t have access to a toilet, it’s fine to slightly reduce your water intake. Don’t restrict yourself unnecessarily, and if you are experiencing a lot of pain and urgency, speak to a urologist about that because there may be something going on to cause it. If there’s anything I have learned, it’s that there are a lot of treatment options for bladder pain that don’t require surgery.
Do not drink alcohol- I am having a Botox injection that is supposed to help with pain and urgency in December that we are hoping it will completely resolve my symptoms. If the injection works, I may have a glass of wine on Christmas, but I will not be drinking anything with alcohol on Thanksgiving because it’s before the injection is done. Alcohol causes inflammation and dehydrates you, which can worsen any kind of chronic pain. If you are experiencing more pain, it is also a good idea to give up alcohol or significantly reduce it because you want to make sure you are hydrating your body for less pain. I have never been a big drinker and went several years and drank no alcohol because of migraine pain so it not that hard for me to pass on it. Alcohol will irritate your bladder even more and is probably not the best thing to do if you are experiencing a lot of pain.
Do not drink tons of extra caffeine- I love a good cup of coffee, and it doesn’t matter how many bladder issues I am having; I am not giving up coffee unless it’s causing life-threatening health problems. If I am experiencing a lot of bladder issues, you won’t find me drinking large amounts of coffee, and I try to limit it as much as I can because caffeine can irritate your bladder and cause more pain. If I am on my period, often I will drink more coffee than usual because I have crippling fatigue, but most times I don’t drink more than one or two cups a day. Skip the extra cup of coffee if you are experiencing bladder issues and drink more water, not more coffee. Coffee has water in it, but coffee does not hydrate your body like water does, and it is most definitely not a substitute.
Do not hold in your pee– When I pee, I have to use catheters because I do not have the muscles to be able to pee without them. I have to somewhat monitor how much I am drinking because if I pee too much, I will run out of supplies, and I can only get supplies once a month. I try not to drink a lot of extra beverages because it’s going to make me have to pee more often, but at the same time never will you see me hold in my pee for long periods of time to avoid going to the bathroom. You shouldn’t hold in your pee for long periods of time unnecessarily, even if you aren’t disabled, because over time it will weaken your bladder muscles and cause issues later down the road. You will never see me hold in pee because of my bladder issues, and I would rather pee more often than not go at all and risk having more problems.
Do not rely on Advil every single day.- There is nothing wrong with taking Advil occasionally for pain, but if you can’t go a day without it, something bigger may be going on. NSAIDs can be harmful to your kidneys if you are taking them in large quantities every single day. If you are becoming too dependent on it, you should speak to a doctor about that because there may be safer medications to manage pain. Popping Advil every single day is not a solution for your bladder pain and may cause other health issues, such as stomach ulcers, because these things are not meant to be taken daily. The only time it is okay to take these medications daily is if you doctor tells you it won’t harm you.
Do not overhydrate yourself– Fitness influencers often tell you to drink large amounts of water every hour, but you probably don’t need to drink as much water as your influencers say you do. Everyone has different hydration needs, and it depends on your activity level and body weight because not everyone needs to drink one hundred ounces of water a day, and for some people that may be too much. It is important to hydrate yourself for good bladder health, but don’t drink too much because over-hydration can be dangerous and is hard on your kidneys. Your body can only process so much water at one time, and if you are drinking too much water, you are not actually hydrating your body, and it’s just going to go right through you.
Bladder issues are frustrating because you can’t do anything if you are running to the bathroom every ten minutes. It is so important that you tell your doctor about any changes in your bladder health because you may not have to suffer, and there could be options for relief. I have tried many different treatment options for my bladder issues, but so far nothing has worked but even though something hasn’t worked yet, that doesn’t mean nothing ever will, and there is no hope. When you are disabled and have a lot of complex health issues, sometimes it can take a while to find the right treatment, which is why it’s so important to take care of yourself so you don’t end up causing more pain. You can’t always get rid of your pain, but you can improve your pain by eating healthier and exercising in a way that supports your pain. You know your body better than your doctor does and if you notice your pain flaring when you do a specific activity then that should be a sign to stop doing it. What would you not do if you were experiencing bladder pain and urgency? If you liked this post, please leave a comment below and share it with your friends.
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