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Interstitial cystitis

Discussion in 'Support Subforum' started by readytoheal, Aug 5, 2016.

  1. readytoheal

    readytoheal Peer Supporter

    Hi all. I'm new here and could really use some help. I have chronic bladder pain-burning, spasms, urgency, with cloudy urine and high leukocytes and traces of blood when tested. I know many believe ic is tms, but there is tissue damage in many with ic. Has anyone here had real inflammation / damage shown and still healed with a tms approach. My greatest fear is that I have an autoimmune disorder because of the inflammation/leukocytes and this will continue to get worse. I know IBS is mind body, yet colitis isn't. So is irritable bladder/ overactive bladder mind body and yet intersistal cystitis something more serious. Terribly afraid and would love to hear from anyone with any insight into this.
  2. Jason32

    Jason32 Peer Supporter

    One thing in your post that I'm familiar with that I can comment on is the blood in the urine. I've always had trace amounts of blood in the urine- it runs in my family. About 15 years ago I had your exact symptoms (was eventually diagnosed with chronic prostatitis at the time) and the blood in the urine was looked at as a possible sign of something bad. CT scan and ultrasound came back normal of course.

    Microscopic amounts of blood in urine is like herniated discs IMHO- in most cases its completely harmless but Doctors love to flip out about it because there's a very small chance it could be caused by kidney stones or a tumor. If you don't have either one of those (or a verified infection) I wouldn't worry about that part. I'm not qualified to give medical advice, just my 2 cents.
    readytoheal and Tennis Tom like this.
  3. readytoheal

    readytoheal Peer Supporter

    Thank you for your response, Jason32. Did you have inflammation? There are so many conflicting things about whether tms causes inflammation, but I obviously do have some (lots?). But I'm assuming prostatitis involves some inflammation as well.
  4. she333

    she333 Peer Supporter

    I have your symptoms. It's pretty bad....been in a recent flare. But I have no henaturia...microscopic or gross. It's true what Jason says. I have had patients with microscopic hematuria and no symptoms like ours. Sometimes it spontaneously ckears. At times it is due to a lottle kidney issue. Sometimes I end up referring them to urology, but nothing comes of it. True, hematuria can be a sign of bladder cancer so it's worth investigating, but often that's not the case.
    readytoheal likes this.
  5. readytoheal

    readytoheal Peer Supporter

    Thank you for your insight. I had a CT scan done on my kidneys and they were fine. Never have had a cystoscopy but kind of don't want one for fear of further evidence that something is physically wrong that can't be fixed. The IC diagnosis feels like a death sentence to me. TMS makes a lot of sense, but when my urine gets so cloudy during a flare, it's hard to think psychological and not physical! Thanks again for your reply! Hope you feel better soon.
  6. she333

    she333 Peer Supporter

    I have seen many posts on the IC network from patients who had a cystoscopy, even with hydrodistention, and were told that everything looks fine but we're still diagnosed with IC. Sometimes I wonder about the benefit of that test, except that some people seem to find it helps their symptoms for a couple months. Especially if they actually do have a small bladder capacity. But then I find other people who got much worse after that was done. So I haven't had it done and I won't be either.

    I know what you're saying. I have had other, milder forms of TMs in the past. I haven't had an elbow surgery. This was all before I realized it was really TMS, but looking back i know it was. But this particular manifestation can be a life altering one, even if only temporarily. I have not had things like back pain or fibro symptoms so I'm not saying that those are awful as well or comparing. Just I suppose comparing it to my other past issues. I really hope things improve for you as well!
    readytoheal likes this.
  7. Plumcrazy

    Plumcrazy Peer Supporter

    I have microscopic blood in my urine, which always ends up being ruled out as normal for me, after the urine is tested. I have had two cystoscopy exams in my life. Definitely an angry, irritated bladder. After revisiting Dr. Sarno's principles for recent hip pain issues, I have begun to consider that my bladder issues could be TMS in overdrive. I have been a frequent bathroom visitor for years and years. I, too, am interested in learning from others who have gotten their bladder issues under control with mind-body awareness. I am on DAY TWO of telling myself that my bladder is OK. I seem to have moments when I can talk myself out of the urgency, so there is hope.
    fridaynotes, she333 and readytoheal like this.

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