Is interstitial cystitis always painful?

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So I've had urinary tract infections all of my life. When i was 11 I had one for about two days before telling anyone about it. Apparently I had several before I was 11, but I don't remember any of them. I am now 23 years old (female). 

The one I had when I was 11 was so bad, that since then I've always had a little bit of discomfort when peeing, and occasionally burning on the vulva when enough pressure was applied like when I sat on a hard surface for too long. I never told anyone about it until recently because I just thought it was normal. 

Well now I'm being investigated for interstitial cystitis, and I've been told its just an excruciating illness that people go through and will have for the rest of their life. 

To be honest, that's not what I feel. I only feel pain when I urinate. That pain is more of a discomfort and occurs mostly when I don't drink enough water and starts deep inside but not as far up as the bladder. It almost feels like it's in my urethra and spreads throughout that area and it eventually disappears within 10 minutes and I can go about my normal day. I feel no pain in my bladder unless I haven't had enough water but even then it doesn't hurt that much. I feel no pain when I'm wondering around, doing my thing every day. It's only ever when I pee and an occasional burning when I don't have enough water but again, it is easily tolerable (probably because I've grown up with it). I've been able to lead a normal life with not many issues, apart from occasional panic attacks because I've had over 7 UTI"s already this years, so I fear getting another. Speaking of which, the only time I've ever felt the excruciating pain was when I was actually diagnosed with a urinary tract infection proven to be caused by E.coli. 

I was just wondering if interstitial cystitis is always painful? or could I be someone who has it, but lucky enough for it to not be an extremely painful case? 

Could it be something else that isn't inside the bladder? \

I am also looking to see if there are any other young women out there around my age who has been diagnosed? 

I welcome anyone to respond. 

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  • Posted

    Hi Danielle, I’m sorry your having bladder problems.  It’s very difficult to say what’s wrong in your case.  It doesn’t sound like interstitial cystitis to me, but it’s good they’re considering the possibility.  It can be an excruciatingly painful condition and I have had such flares, but then again not usually ALL the time and some people are ‘lucky’ enough to have a mild version of it.  My problems started in the urethra so maybe that’s why they’re thinking ahead as it were.  There is a condition called ‘urethral syndrome’ which some medics now believe is related to IC.  That’s what they said I had at first and my symptoms were then similar to yours, except I would have urethral pain that would last a few hours or on and off all day when it was at its worst.  It could be that something is irritating your urethra, either from the inside (through certain foods or drinks) or from the outside (soap, personal deodorants, underwear, washing detergent etc) so it’s a case of playing detective I think.  There is a very app you can download from the IC NETWORK which tells you which foods are ok and which are best to avoid.  It won’t do any harm to give that a go and see if it improves things.  It certainly helped me.  Oh and only ever use white (preferably unbleached) loo paper and don’t wipe too hard! Hope you get some answers soon :-)
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  • Posted

    Hi Danielle, I am sorry you are dealing with this I am all to familiar with these issues. I to had utis when I was younger up until now I am 26. I also had a bad uti when I was younger which then led to me feeling some discomfort well going that would go away after a few minutes so I never brought it up to any doctors as I could live my normal life. Up until a year ago I thought I had another uti and felt the discomfort when going instead of it going away after a few minutes the discomfort would last much longer. Long story short there was no uti and after about 6 months I was diagnosed with IC. I am lucky in having a mild version of it. I have had two bad flares one lasting months and extremely painful but I can also go months without feeling pain (with some IC management tools). It is hard to say if this what you have but there are cases like mine that are mild and can be pain free at times with proper management.
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