When my doctor first suggested bladder instillations I was nervous, and did that thing where you go 'uh, yes, um, can I think about it?'. They sounded invasive and scary, as anything that involves a catheter feels to begin with . . . I've had bladder instillations for over a year now and they have been so helpful for managing interstitial cystitis. This post answers the questions I am asked most often about what to expect from bladder instillations.
Just a note - some people have bladder instillations at home, but this post refers to how I have received them in a hospital setting.
Please note that this is my experience of bladder instillations, and you should always ask your doctor or nurse about the procedure. Each clinic has their own guidelines for this procedure. This post does not constitute medical advice in any way.
Why do I have bladder instillations?
People have this procedure for a number of reasons, but mine personally is due to having interstitial cystitis / bladder pain syndrome. As a cystoscopy showed, my bladder is inflammed, and this procedure helps to calm it down.
I will say at this point that bladder instillations are a little controversial. Some hospitals such as mine regularly treat their urology / uro-gynaecology patients with them, while others say the evidence isn't strong enough to perform them. I was actually turned away from my local hospital for that reason.
What do bladder instillations do?
I'm not going to go into the different types of bladder instillations out there as there are lots of different brands, and it's best to ask your doctor. Broadly speaking though, bladder instillations involve placing different substances such as lidocaine, heparin, sodium bicarbonate and others into the bladder so as to try and help to reduce inflammation and other symptoms (see IC Network). Your doctor will decide on the best formulation for your particular needs and symptoms.
Each clinic is different, but my hospital does a course of six weekly instillations, and then the doctor decides how often to repeat. It can be once a month, or further apart depending upon your symptoms and how effective the instillations are for you.
What does the procedure involve?
Having bladder instillations sounds a bit scary doesn't it. And definitely a bit invasive. Well, I'm not going to say that it isn't invasive, but for me it is definitely worth it and I've had more 'intense' procedures, shall we say . . .
Bladder instillations are performed by a specialist nurse or doctor, and are a rather quick procedure. I would say that I am in and out of the appointment in about 15 minutes, and some of that is a quick chat with the doctor and then taking my clothes off(!) while she prepares the solution.
Prior to seeing the doctor you will likely be asked to give a urine sample so they can check for a UTI. If it is positive then they won't perform the procedure. I wasn't able to have it on one occasion because of this, although I was glad it was picked up early as I wasn't yet symptomatic and it meant I got a prescription for antibiotics to start taking straight away!
For the procedure itself, you will be asked to remove your clothes from the waist down and to sit on a bed in a clinic room. There are sheets so that you can cover yourself as much as possible, but of course the doctor or nurse will need to place the catheter so it's similar to when you go for a smear test / cervical screening.
The doctor or nurse then uses a swab to sterilise the area (yep, it's cold!), and then passes a catheter through the urethra into the bladder. It is lubricated with a local anaesthetic gel to help avoid discomfort and help it pass more easily.
Any remaining urine in the bladder is drained away (you will likely be asked to use the bathroom before the procedure), and the solution is then passed into the bladder. Once this has been completed, the catheter is usually removed (unless there is a clinical reason to keep it in place, or you already have a temporary or permanent catheter in place already). This is a quick procedure, and I'm often surprised when the doctor says it is done!
After the procedure
Each clinic seems to have different guidelines on how long to try and keep the bladder instillations in, and to not use the bathroom. My hospital recommends a minimum of 45 minutes but I usually aim for 2 hours. I actually have a little routine where I get back to the main train station and then wait in a cafe until I absolutely need to pee. I know it's a bit counter-intuitive to drink, but I feel more comfortable waiting until I need to pee before getting the train home and it's become a nice routine to sit and read a magazine with a herbal tea and a piece of cake afterwards!
Are bladder instillations painful?
This is a bit of a tricky question to answer, and it will depend upon your circumstances. For many people it can just be a bit uncomfortable, but not actually painful.
Personally, I have a cranky urethra that doesn't like to be prodded by a catheter - my doctor thinks it is inflammed and I am waiting for a surgery to investigate this further. If it wasn't for that, I wouldn't feel any pain.
How quickly do they start working?
Another tricky question to answer, as we are all individual and like many medical interventions we all respond in different ways. Personally I noticed a difference after three instillations. I wasn't waking as early in the morning due to a painful bladder and my overall pain seemed reduced. Other people I have connected with via my Instagram have said it took a little longer for them to find some relief from them. So don't be discouraged if it doesn't work immediately!
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Please follow the advice of your doctor as to all medical treatments, supplements and dietary choices, as set out in my disclaimer. I am not a medical professional, and this post, as well as all other posts on this blog, are for informational purposes only.
Heather Ritchie says
Now this is interesting! I have interstitial cystitis and never thought about connecting it to my Fibro and RA. I have a bladder interstem and it has worked for that and other issues. I have never heard of bladder instillations. Great article!
I"m not sure if there is a direct association with fibro or RA or not, but it does seem to that many friends with fibro also have IC. And I would definitely consider asking your doctor about instillations, they can be so helpful. Definitely calm my cranky bladder down!
Sheryl Chan says
This sounds awfully invasive, troublesome and painful on first hearing but after reading, am Glad it helps to to improve your quality of life!
it's not as bad as it sounds! Easier than a lot of things I've had done anyway . . .
Katie Clark says
In the past 15 years (since my diagnosis with Interstitial Cystitis), these have been a major part of my pain relief. Unfortunately, they don't work real well since I've been diagnosed with Fibromyalgai. However, if the bladder pain gets really sharp, I know it's time to go in. While yes, it's a bit invasive, it really is a quick procedure. I once called for an installation during my teaching break at 9am, drove to my OBGYN's office down the road from my school on my hour lunch/planning break, and back before the end. Held the "concoction" till the kids left. No one was any the wiser and I was feeling better.
They are quite helpful along with other medication and treatment options aren't they. I'm sorry they aren't that effective for you, but perhaps just help a little bit. And so quick - in and out!!
I have never heard of these before! Thank you for this informative post. A friend of mine has been diagnosed with interstitial cystitis, think I will be sharing this with her. I really appreciate you describing the procedure, too. The unknown is often stressful!
Really hope it's helpful information for your friend! I hadn't heard of them before my doctor suggested them either, and they have been quite beneficial for me.
Shruti Chopra says
This is very helpful for me Claire. My painful bladder diagnosis is relatively new and then with Covid happening, it hasn't been possible to go back for a followup and understand my options so it's really good to read your experience make a note of it for when I see my doctor next.
Thank you for being so open about it.
So glad it's helpful Shruti! Let's hope things settle down soon so that we can see our doctors again. It might be an option for you going forward.
Carrie Kellenberger says
A very informative post! I've been keeping up with your posts here and on IG, but I wasn't completely clear on this procedure until you broke it down for us. Thank you for sharing, Claire!
Thanks Carrie! I'm glad it was helpful and interesting, and potentially for people who have been referred for the procedure too.