Interstitial Cystitis

THIS WEEKS FEATURE: My Treatments for Interstitial Cystitis

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Welcome to this series of “THIS WEEKS FEATURE” which focuses on the treatments I have tried for my various health conditions.

As I mentioned in the first one (which was about Endometriosis – access that here), this series is just to provide a personal experience which I hope helps someone.  I know I am a nightmare for Googling things about medication or conditions, and I like to know what I am getting myself in for.  So if you’re like me, then this article might help!

I’ve already written a feature article on Interstitial Cystitis (I.C.) a while ago, but you can flick back to it using this link if you need to.  In a nutshell, I.C. is an inflammatory condition that is thought to be a combination of an autoimmune response or triggered by a series of infections.  It’s main symptoms focus around urination – patients will have severe frequency and urgency, as well as burning and bladder pain, not to mention recurrent UTIs or at least UTI-type symptoms.

As with most chronic illness, I.C. cannot be cured, so it’s treatment focuses on managing the symptoms and the progression of the disease.  The treatment is a really varied mix, and what you’ll often find is that what works for you will probably not work for someone else.

I.C. treatments are a step approach, meaning that the more severe the disease is or the more treatments that don’t work, the higher up this ladder you go and the treatments become more and more invasive and permanent.

The information below is based on my personal experience only.

Medication

I’ve tried all sorts of medication for my bladder, but none has really helped, or if it did help then it came with a heap of side effects.

  • Over-the-counter antihistamines – the idea behind this is that anti-histamines help repair the bladder and protect if from the cells causing the inflammation and damage.  Over-the-counter ones did absolutely nothing for me.
  • Cimetidine – this is actually a drug used in patients with severe acid reflux, but for some reason it works for patients with I.C. And it did work for me initially – it reduced my frequency at night and my bladder felt more comfortable when it was filling or full.  But, as with most things, I built up a tolerance to it and it became ineffective.
  • Amitriptyline – no-one is really sure why this works for I.C. patients, but the theory is that the use of antidepressants, such as this drug, can help relax the bladder, meaning bladder pain reduces and frequency is less intense.  Apart from making me sleepy, this medication did nothing to my symptoms.  I was offered the chance to take a higher dose, but I turned this down because I was literally unable to function due to the sleepiness it caused me.
  • Antiobiotics – aside from when I had a urine infection, I was taking antibiotics for continuously for months.  When there is a lot of media campaigns focusing on our overuse of antibiotics, you might think it a bit odd that this was what I was prescribed, but the idea was to reduce the number of infections I was experiencing.  Think of it like a preventative measure.  For some I.C. patients, they can be on antibiotics for pretty much the rest of their lives, whereas others will come off when things really improve.  Antibiotics to have side effects though, especially things such as nausea and diarrhea, as well as increasing your resistance to antibiotics in the future.  When I was in a vicious cycle of infections, preventive measures such as this really improved things, and it wasn’t until I had that run of really nasty kidney infections and sepsis that I was put back on them

 

Elmiron

Ah, this little tablet deserves its own heading and space on this post.  If you do your I.C. research then you will probably know that this is probably considered as a wonder drug for many I.C. patients.  The problem?  It is only really used in America, and if you are lucky enough to get a prescription of it in the UK, it is only able to be prescribed by a very specialist urologist and at certain hospitals.  I was only offered this drug because I was referred to a well-known world-renowned center, but it wasn’t as easy as collecting it from my local pharmacy.  Elmiron is a super expensive drug – it costs about £400 for less than 100 tablets.  This explains why it is so hard to get hold of here in the UK, as well as the fact it is not licensed for use in I.C. patients yet (because it is so expensive to fund).  After being given the paper prescription by my consultant, I then had to get it specially ordered from the hospital pharmacy.  Trust me, picking up a repeat of it was a nightmare, but so worth it.  At the time, I was experiencing such severe frequency I would be running to the loo every few minutes and I struggled to eat anything other than lettuce and drink water without it triggering my symptoms.  Elmiron reduced these symptoms so much I got through my wedding without having to stop for the bathroom.  The downside was that the side effects became unbearable – I had daily migraines and lost so much hair, that I had to come off it.

 

Bladder Installations

Bladder installations were the first thing I tried when my bladder got a name for itself.  Bladder installations work by having a catheter placed inside for merely minutes whilst a liquid cocktail of drugs are administered.  This liquid works to restore and protect the lining of the bladder for a temporary period of time.  They come in different strengths, and I worked my way up through about 4 when my consultant decided enough was enough.  They did work in the beginning, but the pain of being catheterised was far too much and led to numerous infections that we decided to stop.  However, they can be really beneficial for some I.C. patients and you are often given the opportunity to learn to administer them yourself at home, which saves many weekly trips to the hospital.

 

Catheters

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A couple of weeks back, I wrote an article about living with a catheter (click here to read), so I will try not to repeat myself too much!.  I’ve had both indwelling catheters and used self-catheters.

Indwelling Catheter

I had this fitted August last year when I had an undiagnosed kidney infection and my I.C. symptoms were preventing me from sleeping or working (it was because of the kidney infection, but it didn’t get diagnosed for ages).   Whilst I had the catheter in – which was for about 8 weeks – I had so much relief (kidney infection aside!) it was incredible.  I didn’t have to worry about going out or getting up in the night.  Of course, indwelling catheters are not really the best permanent option, so I did have it removed, only to have it refitted about 4 weeks later when things were really bad again.  Indwelling catheters can a bit like covering up the problem – yes they take your symptoms away but they won’t treat the root cause.  And they do come with their own set of risks, such as damage to the bladder anatomy and infection.

Self-Catheters

These are literally my nemesis.  I hated using them.  I had to start using them because a lot of my infections at the time were being caused by the urine I was retaining in my bladder – the catheters would enable me to drain it at points throughout the day, meaning infections would be less and I would have less nighttime frequency.  Ha.  They were so painful to put it that I would end up bleeding or damaging myself (and actually I gave myself scar tissue in my urethra which was diagnosed via an operation), and they were fiddling and awkward.  I actually got more infections using them and they led to my nasty kidney infections and sepsis – when my consultant saw me with sepsis he stopped me using them immediately, and thankfully I have not had to look back since!  I might be a bit of an odd one though, because I know a lot of people in the I.C. community that use them with no problems at all.

 

Surgery

There aren’t that many operations available for I.C. patients, unless you are eligible for a permanent solution like a bladder removal, but I have had multiple procedures and smaller operations to try and combat my symptoms;

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  • Hydrodistension – a procedure in which your bladder is stretched repeatedly and/or for a set period of time.  I have had many of these and unfortunately I’ve had more and more complications with the more I have.  I have found they provide relief for a good amount of weeks, however it only took a UTI for this to be reversed and my symptoms return
  • Urethral dilatation – a procedure in which your urethra is stretched repeatedly and/or for a set period of time.  Its used more for patient with flow problems or strictures, but the reason I had it was because a) catheterising me was a big problems and b) because of the recent kidney infections and sepsis I had.  It was incredibly sore after – I can’t even described it! – but it provided be me some relief for a short time

 

Sacral Nerve Stimulation/Sacral Neuromodulation

I’ve dedicated an entire article to this little beauty, which you can read here, as it formed part of the Interstitial Cystitis Awareness Month I was taking part in.  This is a small device that is inserted into your spine, directly where the bladder nerves (sacral nerves) are sitting.  The devices uses electrical pules to stimulate these nerves in order to help them work better or take over the role completely.

It is an extremely expensive device and is only offered at a handful of hospitals in the UK, and therefore only done by very specialist specialists who have undergone a lot of training.  It is something that is only offered to patients after they have tried all sorts of other treatments, and is deemed as a last resort.

I don’t want to repeat myself from my article, but in a nutshell you have the device fitted in two stages – the trial phase (which determines whether it is the right thing for you – this is because it is normally offered to patients with overactive bladders) and the permanent phase.  The only problem with it is that when you have the trial phase, you are really restricted in your activities (such as bending down, lifting etc) because the wire is externally fitted, and even though the permanent device is internal, it still applies during recovery whilst things are settling.

This was the number one thing that changed my bladder symptoms – my urine frequency and bladder pain dramatically increased, so much so that my consultant was almost astonished.  I am waiting to have the permanent device fitted (I have already been offered two dates – unfortunately one fell a couple of days after my last gynaecology surgery and the other when my cyst ruptured and I was being treated for that).

 

The one thing that you hopefully will take away from this article is that whilst there are not a lot of treatments that are specific for I.C., there are a number of options and each one will work differently depending on the patient.  Not all hospitals offer the above treatments, so make sure you do your research and don’t be afraid to ask about anything that hasn’t been offered to you.

 

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