Urinary frequency, pain

I was diagnosed about five years ago with interstitial cystitis (IC) after seeing a urogynecologist for urinary frequency and pain. I had terrible symptoms which at first seemed like frequent urinary tract infections, but the bacterial cultures were usually negative. I had a procedure called a cystoscopy: under anesthesia, they fill your bladder with saline until it is full like a balloon, then examine the bladder walls for sores and fissures. They claim that just the hydrodistension part of the procedure has a good chance of stopping the symptoms, but mine got worse. The doctor viewed areas on my bladder that could be responsible for the pain and diagnosed me with IC. I had twice weekly instillations of medicine in my bladder that I had to hold in for at least an hour that provided some anesthetic relief. I also had to do pelvic floor physical therapy for a tight pelvic floor. The worst of it eventually passed, but I am still on two urinary medications.

I know that with pain, they say that if no structural cause can be identified, it is TMS. Even if structural damage is observed, as with spinal disc degeneration, the cause is often still TMS. I have a lot of pain in various parts of my body, but much of it has subsided now that I know they are TMS. Regarding my bladder, is it possible that my urinary symptoms are mind-body in origin? Even though damage to the bladder was observed? Should I try coming off medication? Unfortunately, there are no medical doctors in the TMS database that practice in northwest Florida. I am lucky to be seeing the only TMS therapist in the region, even though I have to drive over an hour each way.

Any resources or suggestions would be greatly appreciated.

 

I had full blown IC (tms) many years ago and had the same hydro distention you described. They showed me images of a red angry bladder and with dark areas etc. I'm hear to tell you that the interpretation and reading of those types of images are patent nonsense. EVERYONE"S bladder looks like that when it's distended to balloon size. It's beyond laughable that this is still going on and tbh makes fools of urologists. I don't believe you have any actual structural damage, unless they saw a tumor or infection. This is all brain based...just tms...nothing. At the time, Dr. Sarno was not on my radar but the IC went away when I moved and my brain got diverted to something else. A couple years after my IC ordeal (I was treated by top urologists in NYC by the way) I had a traumatic childbirth . I was left totally incontinent and now have a sling as well as scar tissue etc. In any case I have zero pain or urgency or spasms. Zero. My son is 19 now so it's been over 20 years that I had any bladder symptoms. I recommend you lose the belief that you have damage (you don't) and lose the fear of symptoms. Do the work and symptoms will go away as a natural consequence . Once your fear is gone, you can throw out the meds.

 

Thank you, that is what I thought. I’m having trouble with losing the fear, because I have so many different symptoms. I used TMS work to get rid of my excruciating nerve pain, but I still have all kinds of muscular neck and back pain. I went to the doctor a few days ago for my IBS, because I am so constipated and bloated and yes generally scared because it hurts and because I have had the problem for so long that I worry about getting an intestinal blockage. This may be TMI, but what happened was in the parking garage I had an incontinence issue, which I can admit in hindsight was relatively minor. But to me at the time it was a huge emotional upset that ruined my day. Did my brain make that happen to me as some kind of cruel joke when I was just minutes away from the gastroenterology office and bathrooms? That night my back and neck pain increased terribly, and it is still with me two days later. I will dedicate as much time as needed today, to journaling and meditation to hopefully get that pain under control. I know I can’t give up because this stuff works!

I know I switched the discussion from bladder to bowel problems, but that is how intertwined all my symptoms are. They started 17 years ago and there are so many. The urinary and bowel problems are particularly frightening, and with the constant threat of incontinence I can’t be too far from a bathroom, always have to know in advance the location of the bathroom just to be safe.

I know I keep asking if this or that could be TMS, being new to the work and this forum. The scariest thing that happened to me was this past April—I was in the hospital for pericardial effusion, where fluid builds up in the lining around your heart. I had to have pericardial window surgery to drain it and was in the hospital for 10days. Could pericardial effusion be TMS? There was so much fluid I could have died, they said. Can TMS actually kill me?

I am usually calmer than this, but it’s where my mind keeps going after painful nights without sleep. There are no TMS doctors in my area according to the TMS directory, but I am fortunate to be seeing a TMS therapist. I’m trying to figure out how to stop playing whack-a-mole. I do feel like I need some extra reassurance about these serious internal problems.

Thanks so much for your reply.

 

I would also just add, the pericardial effusion was called idiopathic, no known cause. They say the cause, if it can be determined, is usually viral. But they detected no virus in my blood work and admitted this is common. When I think about that, it does have that quality of many TMS symptoms and equivalents: what the mainstream doctors say is often contradictory or nonsensical. They just assumed it was probably viral when the blood work refuted that conclusion.

 

Yes, thank you for the reply. I’m really hurting—I recently quit my oxycodone, gabapentin, and muscle relaxers—for a while I had low pain levels but yesterday and today they are sky high. The first anniversary of my Mom’s death comes this week. I’ll just do the work, and I believe I will get less pain as a result.

 

Thank you, it’s good advice.