(Closed) Interstitial Cystitis help!

posted 5 years ago in Wellness
Post # 4
Member
2963 posts
Sugar bee
  • Wedding: May 2014

All I can offer is prayers. I have a friend with the same condition who is currently in the hospital having her urinary bladder “flushed” to see if that will help. Our naturopath does recommend taking probiotics.

Post # 5
Member
41 posts
Newbee
  • Wedding: June 2013

@lhelm93:  Hi, I don’t know how much I can help because I have the same problem and am not totally better despite trying lots of things. You are not alone though!! !

The main thing that has helped me is physical therapy. I didn’t believe my urologist when he said that this might work..but it really helped! I would keep going forever if my insurance would continue to cover my sessions. My physical therapist also tuaght me some relaxation and deep breathing excersies. I thought this was silly at first, but it helps! It turns out I was making my physical symptoms worse by panicking that they would never get better. I can cope with pain better now.

Benedryl also helps me when I am really in pain. A lot of the pain from IC is related to inflamation and histamines. I find that it is worth me sleepwalking through work/school if the alternative is not being able to go. 

Diet made a difference for me. I do not drink coffee or soda anymore and try to limit other acidic foods. The coffee was a big change. I also stopped taking birth control pills and while I don’t know of any scientific connection, I feel my pain levels are lower. My doctor has no idea why this would be, but I’ll take it!

Let me know if you have any questions. I feel for you and just wanted to send some support out there 🙂 Things will get better. This is not the end of your life. I promise.

 

Post # 6
Member
123 posts
Blushing bee
  • Wedding: May 2014

@rachel-michelle:  Ugh, I have the same problem too, except I haven’t actually been diagnosed with anything yet because of delays in the health care system. But it is pretty horrible. I haven’t recovered from a horrible bladder infection I had 10 months ago (the first and only one I’ve ever had in my 28 years), and it’s completely messed up my sex life, my ability to sit for long periods of time, to wear tight pants and to dance. I already had a crapload of health problems to begin with, so this is not exactly something I need to add to my file.

However, I have heard that massage and relaxation can help. In my case, I actually need to be diagnosed before I can start doing anything about it, but it’s definitely not the end of your life! Even with the pain, I am still living pretty much the way I did before. I just carry around ice packs with me for when it burns really badly, and Tylenol takes the edge off it. I still managed a major promotion at work, and only had to call in sick when I had the initial infection. My boyfriend has been amazing and understanding, and I love him so much more because of it. He has taken me to emerg so many times and sat with me and held my hand while they poked and prodded me with all kinds of needles and IV’s.

So it’s definitely not the end of your life!! I have days where I am so bad, and yet I think about all the good things I have in my life, and it takes my mind off the pain. I heard things like fibromyalgia are much worse.

Post # 7
Member
241 posts
Helper bee
  • Wedding: August 2013

I have also been diagnosed with this! I’m so sorry that you have been too.

There is a diet plan that you can follow that avoids certain foods that allegedly inflame the system.  I follow it on a modified level.

What has helped me feel better in general is cutting out all processed and refined foods, as well as sugar. I don’t do coffee and soda anymore, like the previous poster.

I haven’t had an infection since I gave those things up, and I usually get one at least once a month.

 

Post # 8
Member
454 posts
Helper bee
  • Wedding: October 2013

I have this and have restricted my tea to one cup a day (sob, sob, sob) and have also eliminated citrus fruits and tomatoes. Doing this has helped, as acidic foods are known to be triggers. I also take a product called pre-relief, which is brilliant if you are eating something with trigger foods (trigger foods are in a *lot* of meals!). I even find it helps me if a meal is safe. Plus, sometimes I take it when I am in pain. It does contain calcium however, so it is important not to take tons of the stuff and to separate it from thyroid meds if you are on those.

 

Other people have recommended a product called Cystoprotek, but I have no experience of that. People rave about it though….

 

There are also certain medications that your doctor can prescribe for you.

 

I’d highly recommend reading the IC-network site. There is a lot of info there and a very active forum.

 

I have also just purchased The Better Bladder Book. It’s supposed to be brilliant.

 

 

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