Wednesday, 11 February 2015

Living With IC - Managing Pain

The last post I did about my illness nearly 3 years ago continues to be one of my post read posts to this day, so I thought I'd give a little update on my situation - which has actually changed dramatically over the past 3 months! 

For those of you that haven't seen the previous post, I've suffered from interstitial cystitis from around the age of 4. Very different from cystitis, IC is a chronic illness, according to Erin Barker, is like a bladder infection but the pain is 1000 times worse and it never goes away. Wikipedia states that 'the disease has a profound effect on quality of life. A Harvard University study concluded, "the impact of interstitial cystitis on quality of life is severe and debilitating". A Harvard Medical School guide states that the quality of life of interstitial cystitis patients resembles that of a person on kidney dialysis or suffering from chronic cancer pain'.

It's pretty much ruined my life on a daily basis non-stop for the past 6 years but, while it's still too early to use phrases like remission or pain free and I don't want to jinx anything, my daily pain levels have gone from 8/10 to 2/10 on an average day, which is a HUGE difference. It means it's not something I'm constantly battling and fighting through, I don't have as many bed days and I rarely need pain killers/a hot water bottle which has just completely changed my life.

For the first time in 5 years, I've been discharged from my specialist who said I was a rare success story and that he can't believe the transformation from when he first saw me to now, even just noting little things I hadn't noticed myself, like how I stand up straight now rather than hunching over to try and ease the pain.

I still have bad flare ups that leave me house-bound, but they happen once a month now rather than once a week, and on the average day I barely even notice the pain in my back, tummy, legs and sides.

I completely changed my life to try and make my illness manageable, and while it's taken a long time to see any difference, it's been completely worth the wait. Just in case anyone else with IC is reading this, I'll give a little overview to what I've changed. One of the perils of IC is that it's so subject specific, so no one thing can work for everyone, but I hope it helps you find even a little relief.


One of the most effective things for me was completely changing my diet. Before I ate whatever was easiest to cook, which pretty much meant anything that came from a tin or could be microwaved. All the meat I ate was overly processed and just downright unhealthy, with very few vegetables and no regard to what vitamins/minerals my body might need. Even after many attempts to give up caffeine, I was still living off coffee and energy drinks daily.

I became vegetarian about a year and a half ago, and straight away that completely changed what I eat. It meant I had to think more about what I was eating for meals, and started buying more fresh food and actually eating more of the right things - I even ended up accidentally getting in much better shape because of it! I've also cut down on dairy by switching to almond milk and dairy-free butter, which has also surprisingly made a difference for me.

I kept a food diary, noting which days I experienced more pain and used that to work out what my trigger foods were. My worst was anything high in acidity - even the tiniest bit of tomato and I was in double the pain. I cut out anything that wasn't worth it anymore, and made certain foods that I just couldn't give up (pizza) an allowable treat every so often, but only when I wasn't already having a bad pain week. 

I've also been completely caffeine free for about 2 months now, which has made a massive difference. I cut out tea over a year ago, but was still having the occasional coffee in the house and when I was out, but I've learnt to resist the lure of Starbucks and stick to caffeine free options instead! I do miss it every so often, especially on really busy days, but I just remember how much worse the pain used to be to remind myself even one cup just isn't worth it anymore.

One of the simpliest but effective changes was increasing the amount of water I drink daily. With IC, every time I drink anything it makes the pain worse, and even with low levels of daily pain now it's still excruciating after I pee, so without even realising I was drinking so little water every day to try and avoid this pain. I now keep track to make sure I'm getting at least 8 glasses a day, and while it's made frequency worse and I still get the pain afterwards, it's decreased my daily pain level enough to be worth it!


One of the main triggers of IC is stress related. Living with a chronic illness is an endless cycle of stress - as soon as I felt I was getting a flare up, I'd stress and worry about how it means I won't be able to do as much, and that stress just made me more ill, and the longer I was ill, the more I would stress. It's a hard cycle to get out of, but I think at some point you just have to come to terms with taking time off when your body needs it. I started letting myself rest instead of working through it, and it meant when I could work, I was getting enough done that I could justify time off every few weeks. 

Another big change was moving - before I was living between 2 houses, visiting my nana and my boyfriend, but when you work from home it can put a huge strain on your life not having one set place to work. Every week was getting more and more of a struggle to keep LMD afloat while having to pack up my work space every few days, so getting a place of our own made a huge difference. Living with Ash has changed my life so much - I'm just generally a lot happier and easy going now, and I have no doubt that's helped decrease pain levels further.


Exercising with IC can be very difficult - when I first started training for the Great North Run last year, I was having to do it at a snails pace compared to everyone else because the slightest bit of strain, and I was bed bound for a week. Running is one of the more difficult exercise choices when it comes to IC, but the only one I've found I really enjoy so I've persevered and built it up a little each week, always careful not to push myself too much, and it's made a huge difference to my life. It's meant I feel fitter and my body in general feels healthier - one of the worst things is how weak I feel during a flare up, and knowing I have extra strength now makes a big difference. 

Even with low pain levels I'm still very wary of how hard I push myself when it comes to exercise because I know even if it's dormant, I do still have a chronic illness that can flare up at any time and that's just not worth the risk. 


The only medication I've ever been prescribed that gave me relief was Elmiron. I started noticing a change in daily pain after 5 weeks of taking it, and after 4 months my pain was the lowest it's ever been. I was making all the above lifestyle changes at the same time so I'm not sure if it was the medication or those changes, but I now no longer take the tablets and still keep my IC at a manageable level.

Another big difference was my contraceptive pill. I was on the normal estrogen and progestogen combined pill since I was 11, but that time of the month always meant an excruciating flare up on top of the usual cramps, and so my specialist suggested trying a progestogen only pill. I've been on that now for a year, and the difference is incredible. While it's not as reliable in terms of regulation, it's nice not having additional hormones in my body screwing things up, and now I tend to only experience normal cramp - which is still so strange to me! After having an IC flare up at the same for all of my life, it's actually a relief to experience what most women dread.

It's been a very gradual process to reduce my daily pain. While I made most of the changes to my life over a year ago, it's only the past 3 months I've really seen any benefit. So if you do suffer from IC and don't notice any difference immediately when making lifestyle choices, I can't stress enough how important it is to stick with them and give it a chance.

I still get flare ups at least once a month, but they rarely last over a week and as long as I have my hot water bottle I can still mostly go on as normal, whereas before I'd struggle to move from the pain. I've even been able to slowly reintroduce foods I haven't had in years, such as having the rare tomato and chocolate bar - which might sound silly to anyone that's never had a chronic illness where food can be a big pain trigger, but trust me when I say that's a pretty huge deal. It's taken a long time to get to this point, but I've honestly never been happier!

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