Today’s Medical Mondays post is going to be about one of my more recent diagnoses. Interstitial Cystitis is a bladder condition that is similar to the more well known condition of Cystitis, but instead of being curable & temporary, Interstitial Cystitis is incurable & permanent, but treatable.
This post will include digital illustrations of a medical nature.
Around 16 months ago I started to notice that I was needing to pee a lot more often than usual, especially at night, & I was also experiencing new pain in new places; originally I thought that I had yet another renal infection, which I’ve dealt with regularly ever since my kidney issues back in 2014 (click here for that story). I went to the hospital, something which the doctors who treated me for my kidney issues previously had advised, to have tests done on my blood & urine, but the tests, for once, were all clear. No one in A&E could work out what was wrong with me & so they told me to go to my GP & ask for a new referral to a urologist.
My GP decided that the best thing to do would be to send me for an ultrasound (for someone who hasn’t had children I have had a lot of these scans done!) just to rule out another abscess or kidney stones, as well as tumours or unwanted growths within my renal system – I had these tests done & was told I had one large kidney stone that had attached itself to the scar tissue from the abscess I had in 2014. My GP was unsure about whether the kidney stone was the cause of my symptoms & referred me to a urologist so that they could decide what to do next.
Within a matter of weeks I had an appointment at one of the local private hospitals – my GP had decided that my particular case needed to be dealt with asap due to my medical history & the private hospital was guaranteed to have an appointment sooner than the NHS hospital. The doctor I met with is one of the best urologists in my area so I was confident he would be able to work out what was wrong with me – he simply asked me a few questions about the pains I had been having, as well as when my symptoms were at their worst, & then told me that he thought I had a condition called Interstitial Cystitis. He told me that the condition was a permanent form of Cystitis that can be treated & managed & that, if this was the issue, I would go through stages of having no symptoms at all but would also encounter random flare ups.
In order to determine whether I did have Interstitial Cystitis I was going to have to have a cystoscopy – a procedure that involves a camera being inserted into the urethra & up into the bladder (& sometimes the kidneys). My doctor also felt that I should go for a CT scan just to have a better look at my kidneys to see what was going on with the scar tissue & suspected kidney stone.
My CT scan revealed extensive scarring on my kidney & a collection of calcium that had attached itself to the damaged tissue; recently I have experienced extreme pain in my right side & have been told that this is due to my scarring & that it is something I just have to learn to deal with. Ever since my kidney issues in 2014 I have had to be very careful about keeping myself hydrated, & if I don’t drink enough I experience severe pain – I also get a harsh pulling sensation at times from the tightness of the scar tissue & sometimes this can make me feel a little sick.
When it came to my cystoscopy I was more than a little nervous; I really, really don’t like being put to sleep for procedures as I hate the idea that someone could do anything to me whilst I’m unconscious & I would have no idea about it or any way to stop it. Due to the nature of this procedure I was even more unnerved than usual – I hated the idea that a bunch of strangers (including my older male specialist) would be fiddling with my lady parts whilst I was fast asleep & after the procedure I felt incredibly violated. I found myself unable to look in the mirror if I had no underwear on & whenever I thought about letting someone touch me again I felt incredibly sick. The cystoscopy happened during the two months that me & my boyfriend split up for & I was constantly worried about how I would feel about the next person I had a sexual relationship with… thankfully we ended up getting back together a few weeks later & as I was already really comfortable around Sam, I was able to get over my insecurities fairly quickly.
The results from my cystoscopy confirmed that I had Interstitial Cystitis, which meant that I had yet another condition added to my list of life-long ailments. I found this diagnosis incredibly difficult to accept, because when I first met my specialist I was under the impression that the issues I was having were connected to my damaged kidney… when I found out that my new condition was totally unrelated to my kidney problems I was devastated; yet another thing in my body had gone wrong & there was nothing I could do about it.
So, What Is Interstitial Cystitis?
(be prepared for some gross stuff)
SO! A regular, healthy bladder has a coating of mucus on the inside to help protect the organ itself from the acids in urine; when someone has Interstitial Cystitis the mucus coating has worn away & so the actual bladder finds itself getting irritated by the acidic liquid it stores. In simple terms, my bladder gets irritated by doing the job it’s supposed to do (i.e. holding urine before we get rid of it) & this causes it to want to get rid of the acidic liquid as quickly as it can. The reason people with Interstitial Cystitis go to the toilet more often is because their bladders don’t like storing urine so tell our brain that we need to empty our bladder as quickly as possible – this results in us needing to go to the toilet more often than “normal”, sometimes even needing to go five times in half an hour! At one point I was urinating up to 20 times a day, when the average is between 6 & 8 times (with some people going up to 10 times); so effectively I was going to the toilet more than twice as often as I should have been.
For a lot of people their symptoms are worse at night – doctors don’t know why, just as they don’t know why the condition occurs in the first place. As well as this, I was also going more often at night due to the curvature in my lower spine… as some of you may know I have a condition called lordosis, which means that the natural curve in the lower half of my spine curves inwards more than it should do – other doctors have advised me that this may be putting pressure on some of my organs, which is why I experience discomfort as well as constipation (it can stop things moving through my body at the normal speed because it partially closes off some of my internal pipe work). At night, when I curl up into the foetal position to sleep, my spine relaxes a little & some of the pressure is taken off of my organs – in terms of my bladder, this means that the flow through my renal system suddenly becomes a lot faster – think of it as turning up a tap. This results in more liquid entering my bladder faster than it does when I’m not in the foetal position; this causes my bladder to have a tantrum about holding the liquid & so I’m forced to get out of bed to go to the toilet; then when I get back into bed the process repeats until there’s nothing more travelling through my renal system – this means that it sometimes takes me literal hours to get to sleep because my bladder keeps me awake.
When a cystoscopy is carried out on a patient that is suspected of having Interstitial Cystitis the surgeons are looking for red blotches on the inside of the bladder – sort of like a bad skin reaction to something you’re allergic to. Simply put, the worse the blotches, the worse the condition is.
As I said previously, Interstitial Cystitis isn’t curable – now that my bladder has decided not to produce the right level of mucus to protect itself it’s always going to behave that way, but there are treatments available. One option for treatment is medications, although doctors don’t often like to prescribe these for patients who only have interstitial cystitis; the medications include anti-inflammatory drugs, antidepressants (to help with relaxation), antihistamines & Pentosan polysulfate sodium. Another option is nerve stimulation via TENS machines or sacral nerve stimulation. Acupuncture is also known to be effective for some patients.
There is also bladder distention which involves water being used to stretch the bladder, which encourages new mucus to develop; if successful this procedure can be repeated whenever symptoms start to flare up again. A similar option is called bladder instillation which involves medications being fed directly into the bladder through a tube inserted in the urethra or during a cystoscopy – this is what I had done at the start of January & my symptoms have improved drastically. Instillation isn’t a sure fix though & I will have to have the procedure repeated multiple times throughout my life time.
Full on surgery is also an option, although it is used very rarely; there are a few different surgical options, one being fulguration – this involves ulcers that may be present with Interstitial Cystitis being burnt off of the inside of the bladder. Another is resection, which involves cutting away the ulcers. The final method is bladder augmentation which involves making the bladder larger by using a removed part of the intestines – in very extreme cases the bladder can also be removed & replaced with a new bladder that has been made using removed intestines.
People with Interstitial Cystitis can also make changes to their diet to help reduce their symptoms – this includes cutting out, or cutting down on, foods that are particularly acidic. There are so many diet changes on the internet that claim to help treat the symptoms of Interstitial Cystitis, but every patient’s body is different & what may affect one person, may not affect another. For me, I have found that wines that are made using certain fruits can make my symptoms much worse, for example cherries & strawberries – which sucks because my favourite wine is made up of both of those ingredients! I’ve also discovered that cider is a big no-no for me. Additionally, I find that children’s yogurts irritate my bladder because of some of the artificial colours used. I also avoid lemon as much as I can; I previously drank a friend’s lemon juice by accident & I swear I could feel when it reached my bladder! I also have to be careful with sour apples & grapes, as well as sour sweets – which also sucks because I love sour food! I also can’t touch anything related to oranges, which I was so upset about because I love clementines & occasionally spicy food can keep me up all night as well. Thankfully blackcurrants aren’t an issue for me (I live on blackcurrant Ribena) & neither is tomato ketchup, garlic, pepperoni or salami.
If you want more information on diet changes then just go to Google & you’ll have so many different people providing advice on what to eat & what to not eat. If you think you may have Interstitial Cystitis please go to your doctor as soon as you can – don’t let your bladder be damaged anymore than it already might be!
This post is a lot longer than I thought it would be, so if you’re still reading then well done! As always, I hope you’ve learnt something.