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My Story- I Found the Key
I am writing this post because I have now completed exactly a year with no symptoms and I want to share my story, because even if it helps one person that would be fantastic.
I am 31 now- in my early 20s I had a few episodes of very painful bacterial cystitis after sex. When I hit 25 I started getting cystitis after every single time I had sex, my boyfriend eventually got fed up and left. But the cystitis stayed and got worse. I took many courses of antibiotics and gave up swimming, hiking, camping, and my life became increasingly restricted as I was terrified of more infections as well as limited by the discomfort in my bladder. There were periodic acutes, with blood and terrible pain, and the rest of the time a feeling that my bladder was inflammed, sometimes my urine was cloudy or smelt bad. Urine cultures showed infection but not specific bacteria.
The cystocopy showed nothing, I was given Macodantin but my body totally rejected it, it made me horribly nauseous, I only managed to take it for 3 days. The doctors were kind of at a dead end with me then, since macrodantin was the best they could offer, apart from the comment 'women like you can't have sex'- thanks.... and what about the rest of the infections?
So by then I was desperate, and I spent a great deal of time researching bladders. Exactly a year ago I had the great fortune to speak to a knowledgeable nutritionist. She suggested that my bladder problems might be fungal and suggested that I give up all fruit, sugars and refined carbohydrates (white rice, pasta etc) and take a high-dose omega 3 fish oil. I did this and within 2 weeks my bladder was fine, and it has been ever since. If I go off the diet I have a flare up, but as long as I eat carefully I don't even have to think about my bladder, I'm not paranoid about infections, I can even have sex without repercussions (but I always urinate afterwards, just to be sure). Basically, my life has been completely transformed, every time I think how far I've come this year I want to have a party!
Here is what seems to have happened to me- I am coeliac, and didn't know it for years, hence damage to gut lining (leaky gut- molecules which should stay in the gut can leak into the bloodstream)
Was on pill for years and lots of antibiotics- good gut flora obliterated.
Ate healthy diet, but always lots of fruit, and used to drink plenty of alcohol and fruit juices- yeasts and bacteria well-fed, gut overrun with candida/fermenting bacteria.
Yeast and/or bacteria spills out of gut into bloodstream and into kidneys and bladder causing irritable bladder.
I still have a lot of hard work to do, mainly healing my gut and rebalancing my hormones. It is slow and boring, and I miss alcohol and fruit, but its so worth it. However, I feel that in my case I have found the 'key' (everything stems from my gut), and I can unravel my other health issues form there.
Maybe this will be relevant to someone else. A big clue that I had was that when my cystitis was at its worst I had a bout of thrush. I was given anti-fungal drugs for a week and that was the best week my bladder had had for years :-)
There's a lot of info out there on 'candida' and 'gut fermentation'. Dr. Myhill in the UK has a very informative website (look under 'yeast problems and candida' and 'irritable bladder or allergic bladder'). I'm pretty ticked off that none of my urologists thought of it before, because all the books about candida list 'recurrent cystits' as one of the classic indicators of a candida problem, and I also have most of the other symptoms on the list!
To everyone I say 'don't give up hope'. I found what worked for me because I searched so much, talked to so many people, eventually one of them was able to help me. If you look for long enough and in enough places you will find your 'key', leave no stone unturned. After my experience I would also say thats its worth looking for the root of the problems, rather than just treating symptoms (although in the short term symptom relief is pretty damned important).
I wish you all the best.
I am 31 now- in my early 20s I had a few episodes of very painful bacterial cystitis after sex. When I hit 25 I started getting cystitis after every single time I had sex, my boyfriend eventually got fed up and left. But the cystitis stayed and got worse. I took many courses of antibiotics and gave up swimming, hiking, camping, and my life became increasingly restricted as I was terrified of more infections as well as limited by the discomfort in my bladder. There were periodic acutes, with blood and terrible pain, and the rest of the time a feeling that my bladder was inflammed, sometimes my urine was cloudy or smelt bad. Urine cultures showed infection but not specific bacteria.
The cystocopy showed nothing, I was given Macodantin but my body totally rejected it, it made me horribly nauseous, I only managed to take it for 3 days. The doctors were kind of at a dead end with me then, since macrodantin was the best they could offer, apart from the comment 'women like you can't have sex'- thanks.... and what about the rest of the infections?
So by then I was desperate, and I spent a great deal of time researching bladders. Exactly a year ago I had the great fortune to speak to a knowledgeable nutritionist. She suggested that my bladder problems might be fungal and suggested that I give up all fruit, sugars and refined carbohydrates (white rice, pasta etc) and take a high-dose omega 3 fish oil. I did this and within 2 weeks my bladder was fine, and it has been ever since. If I go off the diet I have a flare up, but as long as I eat carefully I don't even have to think about my bladder, I'm not paranoid about infections, I can even have sex without repercussions (but I always urinate afterwards, just to be sure). Basically, my life has been completely transformed, every time I think how far I've come this year I want to have a party!
Here is what seems to have happened to me- I am coeliac, and didn't know it for years, hence damage to gut lining (leaky gut- molecules which should stay in the gut can leak into the bloodstream)
Was on pill for years and lots of antibiotics- good gut flora obliterated.
Ate healthy diet, but always lots of fruit, and used to drink plenty of alcohol and fruit juices- yeasts and bacteria well-fed, gut overrun with candida/fermenting bacteria.
Yeast and/or bacteria spills out of gut into bloodstream and into kidneys and bladder causing irritable bladder.
I still have a lot of hard work to do, mainly healing my gut and rebalancing my hormones. It is slow and boring, and I miss alcohol and fruit, but its so worth it. However, I feel that in my case I have found the 'key' (everything stems from my gut), and I can unravel my other health issues form there.
Maybe this will be relevant to someone else. A big clue that I had was that when my cystitis was at its worst I had a bout of thrush. I was given anti-fungal drugs for a week and that was the best week my bladder had had for years :-)
There's a lot of info out there on 'candida' and 'gut fermentation'. Dr. Myhill in the UK has a very informative website (look under 'yeast problems and candida' and 'irritable bladder or allergic bladder'). I'm pretty ticked off that none of my urologists thought of it before, because all the books about candida list 'recurrent cystits' as one of the classic indicators of a candida problem, and I also have most of the other symptoms on the list!
To everyone I say 'don't give up hope'. I found what worked for me because I searched so much, talked to so many people, eventually one of them was able to help me. If you look for long enough and in enough places you will find your 'key', leave no stone unturned. After my experience I would also say thats its worth looking for the root of the problems, rather than just treating symptoms (although in the short term symptom relief is pretty damned important).
I wish you all the best.
Diagnosed with IC in September 2010, after suffering from chronic UTI's. I suffer from pretty bad insomnia as well. 
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