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  1. #1
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    Eating extremely healthy yet there's still pain.

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    I completely overhauled my diet and started doing yoga, but the second I get stressed out the pain comes back. Is there any point in keeping this strict diet if I keep getting pain? Is what I have BPS and not IC?

  2. #2
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    Re: Eating extremely healthy yet there's still pain.

    I flare when I get anxious or stressed out too :/ I stick to the diet because if I didn't I would be in pain 24/7. But I understand how frustrating it can be.

  3. #3
    ICN Member my2boys99's Avatar
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    Re: Eating extremely healthy yet there's still pain.

    I think feeling better is a combination of diet, stress relief, possible PT, and whatever meds work for you. If one thing triggers it, it can still help to maintain the others to get it back under control. I have learned over the last few years that I am not super diet sensitive, but I think I'm in the minority. And remember that the diet might take several months to let the bladder lining heal. I know it's frustrating...maybe as you're starting to feel the stress coming on, stop and take many deep breaths (the deep abdominal breathing if you know how to do that). That has helped me many times when I'm on the verge of really stressing out. I also take klonopin to help with my stress and to relax my bladder.
    Jane
    Diagnosed 1/7/14 via cysto/hydro

    Current Treatment:
    10 mg amitriptyline, DH Aloe Vera

    Used During Flares:
    Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

    Practicing bladder training and stress control (hot baths, pelvic stretching)
    Recently tried PT, do not appear to have PFD

    Things that have not helped in the past:
    Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

    Also have migraines and IBS

  4. #4
    ICN Staff ICNDonna's Avatar
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    Re: Eating extremely healthy yet there's still pain.

    Is the diet you are following the IC diet? There are many foods that would be healthy for someone with a normal bladder that can be a problem for an IC bladder. There's a link to the IC diet food list in my signature below.

    Donn
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    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

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    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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  5. #5
    ICN Founder icnmgrjill's Avatar
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    Re: Eating extremely healthy yet there's still pain.

    Whether you have "interstitial cystitis" (defined as Hunner's Lesions) vs. "bladder pain syndrome," following the diet is essential if your symptoms are being driven by your bladder wall. Hmm... let me take a step back here. We now have a sub typing system that helps patients and doctors find the correct therapies for them. The subtypes are:

    #1 - Hunner's Lesions
    #2 - Bladder Wall Dysfunction
    #3 - Pelvic Floor Dysfunction
    #4 - Pudendal Neuralgia
    #5 - Functional Somatic Syndrome

    I wrote about this extensively in our Fall IC Optimist magazine. So, based upon your subtype, diet may or may not be important. If you have #1 and #2, diet modification is critical because we want to avoid foods that could irritate that tender, inflamed and traumatized bladder wall. But, if you have #3 or #4, your symptoms are being driven by pelvic floor muscle dysfunction rather than the bladder. In those patients, diet isn't as important.

    So.. the real question here is... are you bladder wall or pelvic floor driven? Have you had a pelvic floor assessment? If yes, what did they find? If no, then get one

    Jill
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

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    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.







  6. #6
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    Re: Eating extremely healthy yet there's still pain.

    Quote Originally Posted by Darby Croasdale View Post
    I completely overhauled my diet and started doing yoga, but the second I get stressed out the pain comes back. Is there any point in keeping this strict diet if I keep getting pain? Is what I have BPS and not IC?

    It would be most helpful if you posted here several days of what your typical meals are (ideas differ on what a "healthy" diet actually means) plus anything you consumed even in small amounts that might be considered transgressions to your overhauled diet.

  7. #7
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    Re: Eating extremely healthy yet there's still pain.

    Quote Originally Posted by icnmgrjill View Post
    Whether you have "interstitial cystitis" (defined as Hunner's Lesions) vs. "bladder pain syndrome," following the diet is essential if your symptoms are being driven by your bladder wall. Hmm... let me take a step back here. We now have a sub typing system that helps patients and doctors find the correct therapies for them. The subtypes are:

    #1 - Hunner's Lesions
    #2 - Bladder Wall Dysfunction
    #3 - Pelvic Floor Dysfunction
    #4 - Pudendal Neuralgia
    #5 - Functional Somatic Syndrome

    I wrote about this extensively in our Fall IC Optimist magazine. So, based upon your subtype, diet may or may not be important. If you have #1 and #2, diet modification is critical because we want to avoid foods that could irritate that tender, inflamed and traumatized bladder wall. But, if you have #3 or #4, your symptoms are being driven by pelvic floor muscle dysfunction rather than the bladder. In those patients, diet isn't as important.

    So.. the real question here is... are you bladder wall or pelvic floor driven? Have you had a pelvic floor assessment? If yes, what did they find? If no, then get one

    Jill
    Interesting, Jill! I will have to take a look at your article.

    However, I don't think that diet should be discounted in cases 3-5.

    The Standard American Diet (SAD) is far from ideal (just see US obesity rates for reference). Improvements in diet can help most degenerative, inflammatory, and autoimmune health or physical issues, not just an IC/PBS bladder.
    Last edited by Briza; 01-27-2016 at 07:28 PM.

  8. #8
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    Re: Eating extremely healthy yet there's still pain.

    Thank you for breaking this down, Jill, as there are many reasons that cause IC/PBS symptoms. I have found over the past three years that most of my pain (urethral burning, pressure, something stuck in there feeling, sandpaper sensation) was the result of a hypertonic pelvic floor -- tight muscles and trigger points. Once I started pelvic floor therapy, the urethral and vaginal pain starting fading away. All the bladder instillations in the world didn't provide me the relief that pelvic floor therapy does. NOW, just because tight pelvic floor muscles may be the main driver of my pain doesn't mean that diet doesn't affect me. The tight muscles cause urine retention/back up into your intestinal tissues causing inflammation. So if you eat something irritating when your tight muscles are acting up, you could still feel bladder wall discomfort.

    As my doctor told me, it's a vicious cycle: PFD irritates the bladder/vaginal muscles and bladder/urethral inflammation aggravates the PFD. So you need to do whatever you can to break the cycle, which often means a combination of things to address bladder wall inflammation and pelvic floor therapy. To relax the right muscles and relieve pudendal nerve irritation, I had botox injected into tight pelvic floor muscles. I also go to pelvic floor therapy every other week and take 10mg Soma daily, plus daily stretches (a MUST DO). To keep the bladder wall calm to promote healing, I follow the IC diet and also take Hyroxyzine (25mg) daily and Cystoprotek. I also start each day with a pinch of baking soda (aluminum free) is a glass of water.

    Hope this helps. You can get better!

    A note about pelvic floor therapy: You will likely be sore after a session. This is normal. The soreness subsides in a few days as the muscles calm down. After that, good day ahead!
    Cheers, Cheryl

    Current Treatments:
    IC Diet
    25mg Atarax
    Vaginal Valium (as needed)
    Pelvic Floor Therapy (1x/week)
    Quarterly bladder instillations

  9. #9
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    Re: Eating extremely healthy yet there's still pain.

    Hi Jill,

    I'm really worried that I might have #5,

    First my current IC symptoms: My main symptoms are discomfort in my bladder when it's "full"(small capacity), frequency, waking at night, and difficulty starting a stream sometimes.

    My bladder wall look normal, no hunters lesions, and I've been tested recently, no change in my bladder in the last two years. I have more pain after certain foods which I now avoid but I don't flare too I badly after eating the wrong thing.

    I definately have a little PFD going on but I've been going to physio for a year and haven't improved too much from that.

    I do have health anxiety especially since I received a blood transfusion at birth through which I contracted hep c (it was the red cross's fault, Canada 1990). So I grew up with a lot of fear around viruses, disease, and the idea of progressive illnesses generally. I've also developed a fear of doctors since contracting hep c, and so it has set a viscous cycle in motion.

    IC symptoms and celiac desease developed as I completed a brutal hep c treatment (One year on interferon).

    Now, my anxiety worsens when a doctor can't give me answers and it goes beyond seeking answers for IC. I have lots of annoying physical anxiety symptoms. Zaps, numbness, skin sensations on my body, sleepiness, insomnia, etc. Of course, doctors shrug their shoulders and tell me it's probably just anxiety. I kind of hope they are right, but those symptoms aren't too bothersome, if my bladder pain is caused by FSS, do I stand a chance at healing? I can't find much information about this condition on line,
    If you could tell me where to look for theapy options for FSS or direct me towards any threads where patients describe overcoming this, that would be very comforting to me. Im really in need of comfort. I want to know that healing is a likely outcome for me.

    Thank you in advance,
    Dani

  10. #10
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    Re: Eating extremely healthy yet there's still pain.

    It is VERY important to understand that eating by IC Diet will not heal your broken bladder lining. And the longer you wait, the worse it gets and ends in bad cases with bladder shrinking. You need either instillations, the best is Uracyst, but there is also Heparin and so on, read from Guidelines, only DMSO is not recommended. They will help to heal your bladder wall and it is most cases important to continue whole life, as this cover is fading away by time. Other possibility is Elmiron. But I suggest to try Uracyst instillations at least 6-12 months, every 4-5 weeks, to see any results. Eating correct only helps to reduce the burning feeling.

  11. #11
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    Re: Eating extremely healthy yet there's still pain.

    And by the way, I can not even make joga any more, it brings me more cramps and irritation...

  12. #12
    ICN Member Mothergoose's Avatar
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    Re: Eating extremely healthy yet there's still pain.

    I disagree with Krista the Instils do help some people greatly others not so much. Just as the diet helps some more than others.

    Either way my thoughts are following the diet will help your bladder. If you don't eat acidic things that will irritate your bladder it will do better.

    Like picking a scab every time you pick it it opens the sore again, but if leave it alone it will heal.

    Your bladder may not heal completely with diet alone but it will improve.

    Instil are not the only answer. I am in remission and have been for a couple of years, I have never had an instil.

    For years my bladder pain and symptoms were so bad I could not get out of bed for weeks at a time.

    Now I greet each day with what can I do today, I walk, swim, bike, shop, cook, visit friends all the things that I didn't do when I had to pee every 5 mins, and was in so much pain I was not sure I could take it any longer.

    My remission is from a number of things but I believe the diet was the biggest contributing factor.

    IC is so different for everyone, you have to fine what works for you and go for it.
    My are with you all. May you all find a way to peace and joy in your lives.

  13. #13
    ICN Member Aaarrrggghhh's Avatar
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    Re: Eating extremely healthy yet there's still pain.

    Stress upsets my bladder too. Stick with the diet it helps. I wonder if the stress raising the cortisol levels is what irritates it or the tensing of your whole body and of course your pelvic floor that does it

  14. #14
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    Re: Eating extremely healthy yet there's still pain.

    I'm another one who is in remission and I did not take elmiron or use Instills. I credit stress relief and diet for my remission. An anti inflammatory diet heavy on the veggies may help you, Dani.
    I wonder what meds you are taking....zaps, numbness , skin sensations, fatigue, and insomnia can be side effects or withdrawal symptoms of some drugs. I experienced all of these symptoms when I was withdrawing from Xanax and know others who have experienced the same from antidepressants.

  15. #15
    ICN Member Pernille's Avatar
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    Re: Eating extremely healthy yet there's still pain.

    Hi everyone,
    This is a very interesting thread. Because it addresses the different types of IC/BPS. This causes much frustration in diagnosis. In my experience doctors either know one or the other type but not all. I am not very food sensitive, actually if I am doing fine I can eat anything at all, it won't cause a flare. My main trigger is stress. But I still would like to know what the underlying cause is? And I am still not at the point where I can control it. Right now I am in a flare that in the first place seemed to come out of the blue, but I had a lot of stress at work lately.
    My question is, how can these different types be distinguished diagnostically? My bladder wall seems to be fine (cysto with hydrodistension), but I still sometimes have a little blood or leucocytes in the urine.
    What is so difficult to cope with, at least for me, is the uncertainty. So, right now, being in a flare I stick to the diet. My usual diet is quite healthy and I am avoiding tomatos and spicey food as well as more than one cup coffee (with lots of rice milk) in the morning. No vinegar and no fruits with lots of acid (basically blue berries and pears). The IC diet has influenced my awareness for food a lot.
    Yoga and stretching helped a lot. And as my doctor says that I don't have IC or BPS but what she calls a chronic pelvic pain syndrome, I don't have medication. Which sucks at times .. Right now for example.
    This was not really helpful I guess ... Hope you are doing better soon!
    Best
    Pernille
    Struggling with urethral pain for 19 years. When it started in 95 I was told this was psychosomatic. I coped quite well with lots of remissions. Just when I got nervous and was stressed I had urethral pain and felt like I had to pee all the time.
    Cysto/hydro with biopsies in 2012, result: no IC. Had a first, second and third opinion and the result was always PFD or chronic pelvic pain syndrome. I encourage everyone with these symptoms to get a proper diagnosis! I am doing physiotherapy based on yoga exercises, I had been pain free for almost a year... Now unfortunately it is back. So I am still struggeling
    Greetings from Denmark!

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