A few things that helped me with interstitial cystitis

Posted , 5 users are following.

I was diagnosed with IC/painful bladder syndrome about 5 years ago and there were points where I literally was struggling with every day life.. and although I have no cure and am not necessary saying these things will work for anyone but they have definitely helped me lots.. I don't suffer half as much anymore or when I do I usually know why.. 

Pointing out the obvious- I drink loads of water! Generally 2-3 litres a day if not more.. i find this helps incredible amounts.. although I'm going to the toilet more it's 90 percent if not 100 percent less painful/discomfort.

I don't drink caffeine at all.. I drink decaf coffee and tea and if I do happen to drink a regular caffeine tea or coffee.. I can garentee that I will be in pain/discomfort later.

Alcohol is definitely a trigger but I'm 21 and I still want to have fun and have a life so when I drink alcohol I drink lots of water throughout the night and the next day to try and counteract it.. but I know if I'm going to drink alcohol then to expect some sort of pain/ discomfort.

Bicarbonate of soda.. I went through a stage of drinking half a teaspoon of this (mixed with a shotful of water) every morning and if in lots of pain again later throughout the day.. I don't know how healthy this is for your body as a whole.. but  This helped me lots.. I was suffering a lot less when I was drinking bicarbonate soda even though it doesn't taste very nice! 

Food! I honestly have now realised that all my symptoms are generally from what I put in my body.. cranberry a massive NO! Even though it's supposed to help with UTI's for me it made matters so so so much worse..  I tried taking cranberry extract capsules when I read that they might help. I ended up in hospital in an absolute mess because I was in so so much pain! I find chilli, tomato products, fizzy drinks (a lot contain caffeine), juices and squashes trigger my IC. So I try to avoid them.. I also want to quickly say that I am not Vegan/vegetarian and I'm definitely not pushing this on anyone but I watched a documentary about animal products (meat,dairy,eggs etc) and it basically went on about how animal products are so awful for you and said all the science and stuff behind it and it actually changed my whole opinion on food and lifestyle and kind of enlightened me! Anyway I basically went cold turkey vegan for about a month (that's all I lasted lol!) I still ate produced food such as bread, pasta, changed cows milk to coconut milk and still had the odd cheat meal.. but after cutting all animal products out after about 2 weeks all my IC symptoms had completely gone.. it was crazy they had completely gone.. and now I've introduced a little of dairy and meat back into my life my symptoms are coming back..  I now know what triggers my problems and I wish someone had given me some information like this 5 years ago because I honestly was considering having my bladder removed because I couldn't deal with the pain.

I'm not saying that trying any of my methods WILL help you, but they helped me.. and I just want to help other people. I have no will power that's why I stuggle to be vegan even though I know it basically cures me! I just love food! But if your interested in the documentary it's "what the health" and it changed my whole perception on food and helped with my painful bladder symptoms.

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  • Posted

    Hi, you are so spot on with what you've written. For me, this began in earnest last September. My Gyn gave me a list of foods to avoid and doing research I discovered how helpful lots of water can be. Because a bad flare can make going to the bathroom excruciating at times one might think too much water would exacerbate that but for me it does just the opposite. I almost always know how I'm going to be feeling later in the day if I'm eating/drinking things I shouldn't and most times I do know why. As of now, I just can't give up my early a.m. coffee...it's a little thing I truly don't want to go without and yes, I usually end up paying for it. Don't know if you are familiar with this but on the IC site there are products meant to help, like coffees with the acidity tweaked or removed and these capsules that you take to counteract the acid. I haven't tried any of those yet but am interested. I also hear there is a very good freeze dried aloe Vera capsule by a U.K. company called Pukka. A woman on the IC forum swore by this product, saying she hasn't had a flare in six years! I know these things don't work for everyone...same as with the treatments out there..one size does not apparently fit all. I'd love to try this Pukka aloe Vera but it is not sold in the states which is where I am. We do have a company here called Desert Harvest which also markets freeze dried aloe Vera but it hasn't worked very well for me. If you are in England you may want to try the Pukka brand to see if it can help you. I've tried writing to the company but never received a response. Overall, however, your methods are exactly what I am doing. As for alcohol, I try not to overdo and realize at 21 you gotta get out and have fun..I usually stick with wines with no sugars or sulfates...not as bad as other wines which can give me incredible pain. As for hard booze, I find vodka thus far does not really bother me although I don't drink it all the time. As for meat, whether you've got IC or not, it isn't good for anyone. Avoidance or having it only on occasion is the best way to go. Best of course is a plant based diet. One other thing for me..I find that exercise helps, especially Pilates and strength training. There are those days of course, when not much seems to help but, like you, I have a better understanding of what to do in order to stave off the worst symptoms. I appreciate your post...shows me that what I am doing has also been effective for others. Take care!

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    • Posted

      Thank you for your reply.. I really do think that what you consume is the answer.. I'm going to have a look into those dried aloe Vera capsules and have also just invested in something called serreptase capsules which I've heard are amazing for people with IC but I've started taking them today and will see how it goes.. they are natural and are from holland and Barrett in the U.K. But I'm sure you can get them elsewhere as I saw them on the web.. I think what your doing is great.. especially if you know what makes you worse/better etc. Even though I know chocolate doesn't agree with me either I still eat it! As much as I want to I just haven't got the will power to cut it all out, and my life basically revolves around food lol! The person I am today compared to who I was five years ago was such a big difference and it's all from just cutting things out, drinking lots of water and I do excercise daily but I've never seen any difference on whether it helps or not.. all I know is it's good for the body so I do it, I'm glad there are other people in my situation who are able to have some sort of control over there symptoms.. I remember feeling that there was no light at the end of the tunnel and I wouldn't wish that upon anyone. Take care 😊

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  • Posted

    Hi again, you are now the second person who has mentioned serreptase. The other person who mentioned it said it helps her a great deal. I am going to do a search on it and see if I can get it. I hope it isn't something exclusive to Europe. I know you said you saw it on other sites so that's something I will be looking into today. As for exercise, I feel as you do...I do it because it's healthy, plus having a sit down job makes it doubly important. Actually I do notice a difference when I am consistent with exercise and for some reason it makes me feel better with my IC...as does drinking lots of water. Also, lately I've noticed if I keep my calories for any given day on the low side, and watch what I eat, I don't get as bad pressure/swelling as I sometimes get. I used to have endometriosis...and when my IC pain is really bad it reminds me of that. Anyway, if you can, please write again and let me know if the serreptase is working for you, and also, curious as to what's in it. Is it an herbal thing? Is it marketed for IC? These are things I can certainly look up myself, just thinking out loud. Hope you're doing well and having 21 year old fun, ha ha. I have a daughter who just turned 24 this past Saturday. She's a great girl! She used to get horrible cramps and had to go on the pill at a younger age, which I hate. I can only imagine her having to go through what you are going through...so I hope you can keep the worst of these nasty symptoms at bay. No one deserves this. Well, take care!

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  • Posted

    Thought I would pass this on... my mother suffered from Interstitial Cystitis. She purchased a distiller and started drinking distilled water ONLY. She never used ice unless it was made with distilled water, she took her own water to a restaurant and ask for an empty glass. She cooked with distilled water. She was very careful to only use her distilled water. After she did that, she never had symptoms again.  In the US, Smart Water is a bottled water that is distilled. I hope this is helpful. 
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  • Posted

    I have completely rid the IC with Chinese Herbal Medicine.  The man I was seeing is becoming a bit of a celeb these days. The rest of my health complaints I manage now with naturopathy and essentials oils.  I'm so glad it has gone because I suffered for two years.  Hurrendous pain!  On a mission to spread the word now because no one should have to deal with it, imo its just a label because they don't know the cause therefore they say no cure, its not right and it stinks that we have to go through this hell.  

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