I have had bladder instillations for the last two years and often get asked about them. So here is information about them, what they are used for, how the procedure is done and what to expect. Plus I share my experience - this is not meant to put you of, everyone is different but I want to be honest! But overall, they are way less scary than they sound and they can really help.
What is a bladder instillation?
Bladder instillation is a drug therapy to help painful bladder or cystitis type symptoms including frequency, urgency, burning pain or stinging sensations when passing urine. It works by reducing inflammation and discomfort within the bladder. (NHS, 2017)
It is basically a direct way to get medication to treat your bladder. Just like an injection, but instead it's called an 'intravesical' drug as it goes directly into your bladder. There are different types of drugs used in bladder instillations, these will be chosen by your urologist and depend on what they think the cause of your bladder pain is or the symptoms you have. The most common ones include:
Heparin is used as it has anti-inflammatory and surface protective actions. It can mimic the activity of the bladder’s mucous lining which can repair the bladder lining which is often inflamed or damaged with bladder conditions
Dimethyl Sulfoxide (DMSO) is the only drug designed specifically for interstitial cystitis. They don't fully understand why it works, but it helps to reduce inflammation, works as an antispasmodic by relaxes bladder and pelvic muscles, and breaks down scar tissue helping to improve bladder capacity
Sodium hyaluronate solution (Cystistat and Hyacyst) is a substance that naturally occurs in your body. It works by coating the bladder lining (glycosaminoglycan or 'GAG') with a protective layer. There is also some evidence showing it helps prevent acute urine infections
Lidocaine is a topical anaesthetic and can be used on its own or more commonly, in combination with heparin
Cocktails e.g. Parsons Cocktail, Whitmore Cocktail, DMSO cocktail, are when these drugs are used in different combinations and with different percentages to help multiple symptoms (Examples here)
When would they suggest bladder instillations?
Bladder instillations are normally referred to as 2nd or 3rd line treatment for chronic bladder pain. Once other causes of bladder pain have been ruled out such as malignancy or acute infections, they will make a diagnosis based on symptoms, urinalysis and often cystoscopy (with or without biopsy) and often an ultrasound on the bladder and kidneys. Once they have diagnosed with IC or overactive bladder pain or bladder pain syndrome they will try non-pharmacological methods first. This includes patient education, dietary management, over-the counter pain medications and bladder re-training. Next would be pharmacological treatments such as:
Anticholinergics e.g oxybutynin, tolterodin which block the chemical messenger (acetylcholine) that sends signals to your brain to contract your bladder used to help treat overactive bladder.
Tricyclic antidepressants (e.g. amitriptyline) which when taken at low doses, can relax the bladder and hinder the release of neurochemicals that can cause bladder pain and inflammation.
Cimetidine has shown to improve symptoms for patients however research is yet to help understand how this helps, but they think it is due to it blocking histamine release by its immunomodulatory effect on mast cells and T-cells.
Following this they will then start intravesical treatments often starting with one drug or cocktail and moving on to another if that has not helped. The next line of treatment following bladder instillations is surgery.
How often do you have the instillations?
Usually you start the treatment once a week for six weeks, then once a month for six months, depending on how your symptoms have settled. Following this you will be reviewed by the medical team to assess whether to continue this long term, or if this drug hasn't helped at all to try a different cocktail. There is limited research on which instillation drugs are the most effective or why some drugs work better on some people so it is common to try a couple before finding one that if effective for you.
How do they give you a bladder instillation?
Bladder instillations are administered by a urology nurse usually in a hospital based setting. It normally is a quick procedure and then if it is your first time with that medication they keep you in clinic for 15min-30min to make sure you don't have a reaction to the drug.
The medication is inserted through a small catheter which they will insert. If you already have a catheter in situ, either a urethral indwelling or supra pubic catheter then the procedure is really easy as the catheterisation part is the worst bit!
First you give in your urine sample as they have to test it for an infection - if you have an infection that day you are unable to have the bladder instillation. Then you lie on the bed with all your lower clothing removed. They will keep you covered as much as possible throughout, but it is invasive as they need to see where to put the catheter! They will clean the area before using a sterile method to insert the catheter up your urethra. Your urethra is a tiny hole, which they put some lubricant around often instillagel or something similar to help insert the catheter. Once the catheter is inserted, the nurse will often tape it to the side of your leg to keep it secure - they do not inflate a balloon like long term catheters as it is only in for a short time. First they will drain any remaining urine left in your bladder so it is completely empty. Then they use a big syringe and insert the medication into your bladder. It is only around 50mls, you can sometimes feel something cool inside but it does not hurt. Then they will gently remove the catheter which comes out easily and you can wipe yourself dry from the lubricant and get dressed.
The idea is then to try and hold on to the solution in your bladder for as long as you can manage and not go to the toilet. The longer you hold it, the longer it has to take effect. I usually aimed for 4 hours depending on how my pain was that day and how long I could survive without drinking! However some hospitals or some solutions do not require you to hold on to it for so long, this will be discussed with you by your urology team. Then when you feel you need to go, you just go the toilet as usual and urinate the solution out.
How do you prepare for a bladder instillation?
There seems to be different advice depending on where you have your instillation done. I was always told to stop drinking for 4 hours before my appointment. This is to ensure you have an empty bladder and no more fluid will make its way down into your bladder after the procedure so it doesn't dilute the solution. However you can continue to take all other medication except check with your doctor re: water tablets.
What are the potential side effects?
The risks associated with bladder instillations are really low, there is some risk associated with catheterisation as you are introducing a foreign object which can increase your risk of an infection. So if you feel a sharp increase in pain/burn pain, back pain and high temperature go to your GP. If you are having the treatment in a hospital based setting then you are exposed to the tiny risk of hospital acquired infections, but as you are only in for max 30 minutes this is extremely low!
You may have a reaction to the medication caused, again if the pain is really acute and you feel unwell then tell the nurse straight away.
The most common side effects can be pain. This is mostly from being catheterised itself as apart from an allergic reaction, the solutions itself shouldn't hurt. It may mean the next few days it hurts when passing urine or you feel your symptoms of frequency or urgency have increased.
My experience?
For me, the worst part was being catheterised. Due to what we now understand is my urethral sphincter being in constant spasm, it made having the catheter inserted really painful. The nurse often couldn't get it in despite her years of experience and regularly told me I was extremely hard to catheterise due to my 'tiny urethra'. Now we know a tiny urethra isn't actually a thing, but instead just was it clamped shut hence why I couldn't pee and had constant pain and constantly felt like I was bursting for the loo. I would be in agony afterwards, barely able to walk or sit and would take 3 days to recover as it would trigger a bout of bladder spasms.
I also didn't realise at the time that I was allergic to 'Parsons cocktail' which was the first solution they tried. It used to burn inside my bladder and cause me to have a mast cell reaction and make me feel really poorly. On reflection it seems obvious I was reacting to it, but at the time I didn't know what to expect and just assumed this pain was normal. It wasn't, as soon as we switched to a different solution I still had the post-catheter pain but the solution itself didn't hurt!
My bladder condition isn't technically interstitial cystitis/bladder pain syndrome so my use of instillations is a little different plus my experience may be very different to others. I have Fowlers syndrome which means I was in constant urine retention which lead to continuous infections which caused inflammation in my bladder. I still have bladder instillations once a month with Cystistat to help manage my inflammation and prevent infections. I have found this helpful alongside now having a catheter!
My tips:
Wear comfortable clothes, big comfy pants and sometimes a pad is useful to for any leakage/instillagel remains
I used to go with ice pack and hot water bottle to help with post-catheterisation pain plus have my break through pain killers on hand too to make the journey and recovery more manageable
Relax! The more you can let go and relax whilst being catheterised the easier. Let go through your pelvic floor and take big belly breaths. I found either counting to 10 with my breath or talking to the nurse helped distract me
Don't accept bad pain. We can be too brave, if something doesn't feel right it could be a reaction to the solution or an infection afterwards so listen to your body.
Ask for the smallest catheter possible - I used to have a size 8 or kids catheters but I think they standard they use is a 10 or 12 CH so always feel comfortable to asking your nurse if they can try a smaller size if you find it really uncomfortable.
Give it time - it can be hard to know if its working, which is they they give it over a long period of time. It normally takes 4-6 weeks to notice if it is going to help, but then also depends how symptomatic you are and if you have had infections in the meantime
Distract yourself before hand - I used to do puzzles in my puzzle book right up until I went in and then always saved something good on netflix or tv to 'treat myself' too for afterwards plus I had always had some emergency chocolate on hand!
Hope this has been helpful - as always please feel free to message me or email me on activelyautoimmune@gmail.com with any questions
Lots of love, Zoe xx