Bladder pain is horrific. It's up there with migraines in terms of unbearable pain. Over the last 4 years I have had numerous episodes of being in agony, feeling so stuck and not knowing what to do. Playing that fun game of...Is it an infection? I am in retention? Is it my catheter? Is it inflamed? Or does it just hate me and want to ruin my life? It's often scary, not knowing what is causing the pain. It's isolating and a lonely place to be. It's usually me and my bladder, sitting on the bathroom floor with an ice pack shoved between my legs, with suppositories and catheter supplies scattered around me trying ANYTHING that might help.
I am sure most bladder pro's, like myself, already know all these things. But I thought I would share 10 things I do in case even just one thing helps add another tool into someones tool box. As thats how I think about managing my bladder pain, using each management tool one after the other until something or some combination of things helps. To have a toolbox of things that you trust will help a little, helps you mentally feel more in control of your pain which is so important.
1. Ice Pack and Hot water bottle
My usual go to is a hot water bottle, either between my legs or on my stomach. Even better is the yuyu bottle (extra long water bottle) as that goes both on my stomach and legs at the same time. But some times when the spasms are crazy or you have that burning pain either from an infection or catheter discomfort, ice really helps. Then I will do ice pack between legs and heat on stomach and sometimes heat on my back too as the pain radiates up to my kidneys.
2. Diclofenac Suppositories
I never mention medication as everyone responds differently and what could be a positive experience for someone, could be negative for someone else. However Diclofenac is my new go - to medication for bladder spasms/catheter pain. I'm on all the usual bladder meds to help with spasms which on a day to day basis do help a little, but nothing would touch the crazy agonising pain of spasms..until this! It's an anti-inflammatory but you take it rectally so its absorbed quickly, avoids stomach issues usually associated with anti-inflammatory meds and most importantly, I find it really helps. The spasms go from unbearable to more manageable which is a massive win as normally I just had to wait them out.
3. Open your bowels
So your bladder and bowels obviously both hang out in the same area and if one is 'full' it puts pressure on the other, as they aren't always great at sharing the space. I have chronic constipation due to GI dysmotility and I am unable to independently open my bowels so I use colonic irrigation. I know there is a strong link to when I am full and my bladder spasms. I never think its the only factor, but one of many contributing factors so I will increase my medication and add in more colonic irrigation to try to help relieve the pressure.
4. Pelvic Floor Release
Sometimes the spasms are from the pelvic floor itself, or sometimes the pain and spasms from your bladder and urethra trigger spasms in your pelvic floor due to the effect of pain. Either way it's likely that your pelvic floor muscles are in spasm too. If you haven't already, find a good woman's health or pelvic floor physiotherapist. They can help assess your pelvic floor and work on both strengthening it as well as helping it relax and let go. They can also teach you some gentle techniques you can use yourself to release muscles both externally and internally. When my pain is severe I can only tolerate some gentle external self-release work which does help a little. I will link some information here if you want to try but I would recommend seeing a professional first to help ensure you are using the techniques correctly and whats best for you.
5. Positions of Ease/Stretches
When you experience any sort of pain, the body utilities its protective mechanisms which involves tensing muscles to protect the body from harm. Positions of ease are positions that help encourage your muscles to relax. Although when in a pain crisis I just go in whatever position I can tolerate which is usually curling into a ball! But sometimes I can tolerate lying down frogs legs or legs up a wall which help encourage your muscles to let go. I often find positions of ease and stretches are most useful after an acute episode to help return to whatever your 'normal' may be. Here are 5 exercises I commonly use.
6. Catheter Adjustments (obviously only for people that have an indwelling catheter)
Most of my spasms are now triggered by my supra pubic catheter. It used to be retention (hence why I needed to use catheters) but as long as my urine is draining its often the catheter itself triggering the spasms. So these are things I do to help, some may not help at all but its become a little process I follow now:
- clean around catheter site (whether it was urethral or supra pubic)
- gently move catheter to make sure it hasn't shifted in the bladder
- re-tape my catheter on my stomach or fix it onto my leg using G-strap so its not stable
- alternate between free-drainage (using a bag) or using a valve. Sometimes free draining takes the pressure off my bladder or sometimes it adds pain due to the suction the bag causes
- Sit on the toilet. Even though I cannot pee I sometimes sit on the toilet to trick my brain into thinking its okay and its emptying which sometimes helps. (Although at the moment sitting on the toilet gives me crazy spasms so I don't do this anymore)
7. 'Fixing' the problem
This is a tricky one as you often need to know what you thiiiiink may be the issue to know whats best to do. For example if I know my catheter isn't draining, I will drink a bit to try and 'flush' it through and ensure its not due to lack of hydration, but equally I won't drink litres as if its blocked it will just make the pain/symptoms worse. If I think its an infection I will drink loaaads, do a sample and start antibiotics straight away. When I was self-cathing I had to balance when to catheterise to help drain urine, but then also not overdoing it as the more I did it the more my urethra bled and spasm-ed. So it depends what the underlying issue kind of is, but when in doubt or if it wouldn't ease, I'd throw everything at it.
8. Ask for help
My mum always says to me 'don't be too brave'. When my catheter stops draining I leave it so long before I would go for help from my medical team, meaning I am just prolonging how long I am in pain for. I used to say it was like admitting defeat, that my strategies didn't work and that somehow meant it was a personal failure for me. But it's not like that, we have not failed if we need help. We cope with so much, and are so used to such high levels of pain that sometimes we forget there is help if we need it. So don't be too brave and seek medical advice if you need to.
9. Talk about it
After an episode of extreme bladder pain, whether following a catheter change, blocked catheter, or just crazy spasms for unknown reasons, I feel shaken up. It's similar to how I feel emerging from the other side of a migraine. The trauma of the horrific pain and desperation I felt, leaves me feeling flat and empty, like it has taken all my energy. I can often feel quite alone as its just you coping with it, in bed or on the bathroom floor. Hours spent desperately trying to figure out whats going on and how you can do anything to help reduce the pain. My natural response is to de-connect from the world, to curl in a ball and shut everything out. There is nothing wrong with that, but sometimes I find for me it prolongs that mood. I find opening up and talking to someone about what I went through with someone who 'get's it' helps me deal with whats happened and move on.
If none of the above help at all, it's okay to cry. I try to get myself as comfortable as possible, cover myself with ice and heat and put on a podcast or something to distract. Or if I can't focus on a podcast, I just follow my breath with each inhale and exhale knowing that each breath is another moment I got through. I tell myself that this will pass, it always does even if it feels like it never will. And eventually it does.
Do you have any other tips you find helpful? Let me know!
Lots of love, Zoe xx