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Anyone care to discuss Bladder Issues?

Annikki

Senior Member
Messages
146
Have you heard of interstitial cystitis? It is a bladder disease with frequent urination and pain as its core symptoms. Further more it frequently occurs in CFS patients, and shares some of the same biological dysfunctions of CFS. Some types of it are considered autoimmune and autoimmunity often is attributed to CFS. I warn you that this disease is also called psychogenic by Simon Wessely, so your experience with doctors may mirror what you go through with CFS. Take heart though, biological markers for interstitial cystitis have been found, in fact numerous biomarkers exist. So stay the course with it, and don't let quacks like Wessely get away with lies about it and abandon any skeptical doctors. There are some good doctors out there who treat it. Find them and hang for dear life.
 
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Rufous McKinney

Senior Member
Messages
13,249
Some types of it are considered autoimmune and autoimmunity is attributed to CFS by some researchers.

I've heard of cystitis and probably thats some form of what I"m dealing with....

So anxiety exacerbates it....so it does include a psychological component in my case in that when I'm in defiance of Sickness Behavior, things get very intense.

So a recent 4 hour airplane trip was sheer bladder misery, and 1/2 a Xanax didn't help.
 

Annikki

Senior Member
Messages
146
I woul
I've heard of cystitis and probably thats some form of what I"m dealing with....

So anxiety exacerbates it....so it does include a psychological component in my case in that when I'm in defiance of Sickness Behavior, things get very intense.

So a recent 4 hour airplane trip was sheer bladder misery, and 1/2 a Xanax didn't help.
I wouldn't call that psychological, for several reasons. The first reason is that tension in the pelvic floor muscles can directly affect interstitial cystitis symptoms, and when you are stressed your pelvic floor muscles tense. Some IC patients take physical therapy which targets the pelvic floor muscles and teaches them to relax. The second reason, is that IC flares occur from inflammatory cytokines which stress seems to activate. The third reason is that all autoimmune diseases tend to flare from stress, fibromyalgia as one example. These flares have much in common with the way post exertional malaise occurs with CFS. Some types of IC have been found to be viral. If viruses are at work in a disease, exertion or stress will make you sicker. Its no different than how it works when you have the flu. Exercise or experience stress and your flu gets much worse. One factor found to be at work in IC is cortisol. Cortisol is a stress hormone. Low morning cortisol was found to decrease IC symptoms. By the way, I wonder if cortisol in CFS has been studied. Surely exercise and extersion affect cortisol levels. Lastly, be an expert on urinary dysfunction, even normal people urinate under stress. The idea of people urinating on themselves when feeling extreme fear is old and joked about. I've read articles about the physical mechanisms involved. Unfortunately, scientific and medical understanding of interstitial cystitis and CFS is still in its infancy, and from all the needless controversy about these diseases. This sets back what science knows about the human body. What I'm witnessing now is that patient advocacy groups who've stayed the course asking for more research on poorly understood diseases has furthered what science knows about the human body. The studies we demand be done uncover wisdom about the human body. For not just our sake we need to keep this pressure on the medical and scientific community.
 
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Rufous McKinney

Senior Member
Messages
13,249
I wouldn't call that psychological, for several reasons.

Thats all very interesting...and so Yes, I'd say its not psychological in the way I described it. Its much more physical in the way you describe it.

Recently I"m realizing that there is just so much more going on here with autonomic nervous system dysfunction, mast cells...and these various things. LIke now my stomach isn't emptying, it appears. Thats new. Great.

I think ME cortisol levels have been at least cursorily examined in some of the various research studies..I know I've seen graphs...
 

Annikki

Senior Member
Messages
146
I really hate to say this, but I recall my earliest IC symptom was feeling the need to urinate before going out to a stressful event. The best advice I can give you is to find a doctor who will be willing to perform a cystoscopy on you, since right now this is the only way they can diagnose it- well, there are some new tests but they have to be approved by the FDA. If you have interstitial cystitis, the cystoscopy will show "glomerulations." In plain english that means broken and distended blood vessels. If you have severe symptoms it's possible ulcers will also be found. I doubt in your case there are ulcers involved, because your pain would be off-the-deep-end severe in this case. In terms of simpler testing, if a decent urine dip test finds trace blood, then IC is highly likely. I hope I'm wrong about this, but given this is a CFS forum and given what my experience has been, if I were you I'd get tested, if anything to rule out IC. In the mean time, if you think it could be IC, cut out caffeine, coffee, soda, alcohol and spicy foods. If holding to that protocol helps your symptoms, it's probably IC. If it helps, keep doing it, it lets the bladder heal and stops the inflammatory process. Best wishes. Hope it's just a UTI or something simple. A urologist may help.
 

Rufous McKinney

Senior Member
Messages
13,249
if I were you I'd get tested, if anything to rule out IC. In the mean time, if you think it could be IC, cutout caffeine, coffee, soda, alcohol and spicy foods

Maybe you could answer this very perplexing question...

I feel like my bladder holds very little. Go frequently, not much. No fire will be put out. So I had to get an ovarian ultrasound, and they told me to drink this liter of water.

It was painful...driving 1/2 hour whle drinking this HUGE amount of water. I literally barely got into the waiting room, doubled over. Hardly made it to the table.

"Your bladder is not full" the technician states. I see somethign on the screen, like a small baloon. I know nothing, I'm in the Compromised Position, this technician explains nothing and generally I fail to ask proper questions.

Whats with my bladder? Where is this liter of water? Why? What?

so I visit a bathroom every 1/2 hour, usually can sleep 5 hours, then its every hour.
 

Rufous McKinney

Senior Member
Messages
13,249
if you think it could be IC, cut out caffeine, coffee, soda, alcohol and spicy foods. If holding to that protocol helps your symptoms, it's probably IC. If it helps, keep doing it, it lets the bladder heal a

Mostly it happens intensely infrequently, thank goodness...but my bladder I somewhat wondered if its prolapsed. Also have drama with it exiting...like sometimes it wont come out.

But wanted to mention the collagen theory. Simply, with the ME and weakened collagen processes, I've simply wondered if thats MOSTLY contributing to weakening it somehow, it not holding much, other symptoms....
 

Annikki

Senior Member
Messages
146
One problem of interstitial cystitis (IC) is bladder shrinkage. After 10 years of the disease my bladder capacity shrunk to 600cc which isn't much. I hate to give bad news, and I understand well your confusion. So I will give you some answers, be it in summarized form. This means there are articles out there about what I've learned but I'm just giving you leads to that research. For starters, being a "contested illness" like CFS, understanding of IC is still very primitive since they felt need to dispute its reality. However, research into it is gaining ground. The latest report is that several different types/subsets of IC have been found.

One subset is ulcerative IC which I have. One study found BK virus present and active in ulcerative IC patients. This virus is in most people's bladders but only IC patients and people on immunosuppressive drugs after kidney transplant have symptomic BK virus.

In another subset of IC, Epstein-Barr Virus was found in the bladder. Very interesting since EBV has been found in both CFS and fibromyalgia patients. However in CFS, EBV is found but not considered a cause of CFS. EBV was only found in some CFS patients, in other words.

A chemical only found IC patients urine called, "Antiproliferative Factor" was discovered a few years ago. This chemical is a siagloglycopeptide and this class of chemical was only found to be produced in the human body prior to this by certain cancers. Antiproliferative factor production traces back to gene p53, a gene which orders cell death. It's a gene heavily studied by cancer researchers since it's the gene which should order cancer cells to die. More recent studies about IC found that mitochondria in the bladder seem to instigate the order for cells in the bladder to die. Mitochodria are said to order this cell death as means to protect themselves. Antiproliferative factor is an official IC biomarker and some day may be the foundation for an IC test which can be conducted non-invasively. However, last I checked, the FDA had as yet to approve that test.

One set back with IC knowledge has been that there is only one test used to detect for bacteria in bladders and this test centers around finding e-coli bacteria. IC researchers have complained that the failure to culture long enough to detect other bacteria in human bladders may miss any other types of bacterial infection. Some researchers think bacteria and fungi shouldn't be ruled out in IC cases. Some IC patients get improvement upon taking certain antibiotics. Macrobid helped my IC and has helped other IC patients. Also, a special diet with non-acidic, non irritating foods causes some people's IC to go into remission. You have to approach your diet with IC like an allergy, in the sense you identify what foods aggravate it. However, there is a general list of foods IC patients should avoid if they seek to reduce pain, urgency and frequency. Coffee is the worst thing an IC patient can consume. I recommend avoiding coffee at all costs. We IC patients use coffee alternatives like Kava.

Felines get interstitial cystitis. Tony Buffington, a veterinary research at Ohio State University studies feline IC. He developed a blood test for human and feline interstitial cystitis using a novel approach of sending light into a blood sample to detect abnormalities this way. He succeeded. So something is in the blood of IC patients.

CFS, endometriosis, fibromyalgia, lupus and Sjogren's Disease are comorbid to IC. So research into these diseases is something I'd recommend. CFS has a unique cytokine signature, so does IC, though each aren't identical- there are similarities though. Cytokines are produced by mast cells and these are the main drivers of disease symptoms in both CFS and IC. Some doctors treat IC with antihistamines. These don't cure but help.

Recent research has found there is a urinary microbiome just like a gut microbiome. Researchers found a deficiency of lactobaccillus in the microbiome of IC patients. What this means I can't tell you.

Back 10 years ago some studies noticed abnormal ATP signalling in IC patients bladders. ATP is adenosine triphosphate and it relates to energy metabolism. I noticed some articles here about recent threads about
ATP and CFS.

See, if you really study this stuff, you will see exactly what you see in CFS. ATP in the bladder? Who'd have thought that? What does it all mean? It means something is really wrong, we don't understand much at all about the human body. Why is there so many similarities at work in IC patients, CFS patients, fibro patients? Good question. Again we don't know that much. I think we could find the cause of CFS and all related diseases if we really understood all the mechanisms involved. And who could imagine a human bladder is this complex?

It always feels to me the answer to these questions is there. We just have to be creative and open minded in terms of how we think of the problem. Or we get researchers who can think in these terms and work for us. So take heart, it's not all bad. In my case, heparin bladder installations worked the best. In the ulcerative type of IC patients became symptom free for 8 months after having antiviral medication instilled in their bladders. I had some success upping the dosage of oral antivirals. It's not hopeless, just problem no one bothered to understand, much like CFS. Best wishes!

I would also like to add that I think that maybe if IC really is part of this general disease profile in patients with CFS, fibro, etc. it is worth it for people who don't have it but have CFS, etc. to study it. It has similarities to all these diseases but since the biochemistry of it is limited to a particular region of the body, it is in some ways easier to study. Plus, understanding brain chemistry in diseases like CFS is much harder. You can't cut into a brain, culture tissue there and check for chemicals as easily as can be done in a bladder. Since in neuroimmune disease you're limited to testing spinal fluid, etc. you have limitations in terms of studying it.
 
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Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
Some researchers think bacteria and fungi shouldn't be ruled out in IC cases. ... We just have to be creative and open minded in terms of how we think of the problem.

Hi @Annikki, thanks for your great posts. -- I experimented a few years ago with MMS, which is a chlorine dioxide solution (CDS). It's sprayed on meats in slaughterhouses to keep bacteria levels in check. It's also used in a number of oral hygiene products, again to fight bacteria.

Some people take minute doses of CDS internally to address various infection issues that may be going on in the body. I felt better while I was doing those CDS experiments. I also noticed after a few days that my IC symptoms (of many years standing) almost entirely disappeared, and never came back.
 

Annikki

Senior Member
Messages
146
Hi @Annikki, thanks for your great posts. -- I experimented a few years ago with MMS, which is a chlorine dioxide solution (CDS). It's sprayed on meats in slaughterhouses to keep bacteria levels in check. It's also used in a number of oral hygiene products, again to fight bacteria.

Some people take minute doses of CDS internally to address various infection issues that may be going on in the body. I felt better while I was doing those CDS experiments. I also noticed after a few days that my IC symptoms (of many years standing) almost entirely disappeared, and never came back.
Thank you! Oh, I edited and added info to my previous post. Sorry if I'm sloppy, there's just so much to cover.
 

Annikki

Senior Member
Messages
146
Oh, I forgot to mention this. Thyroid abnormalities were found in both human and feline interstitial cystitis sufferers. Felines with interstitial cystitis are hyperthyroid, while humans with IC seem more hypothyroid, but I think other human IC patients are hyperthyroid. Also IC is associated with the PAND gene. The best I can make of this is that there's some dysfunctional immune system element at work in IC and probably in CFS. In both cases there's an elevated immune response, generating cytokines and cytokines wreck havoc on the human body, especially in CFS patients. There's also probably also, strangely, some immunosuppressive element at work. I mean why are these otherwise benign viruses like EBV and BK virus causing trouble? IMHO, something is triggering the cytokines and I wouldn't rule out an actual pathogen. In both CFS and IC you also have cancer factoring into the equation. Cancers can onset from viruses, so IMHO, this supports a pathogen hypothesis. I'm partial to the pathogen hypothesis, since damage to my bladder wall was what started my IC symptoms. It feels like the damage perforated my bladder wall and allowed something in. Plus, I have autoimmune disease on both sides of my family, CFS on my dad's side, and this I think has made me sick. IMHO bladder damage isn't in and of itself a likely cause of IC, since there's what's called "ketamine cystitis" where ketamine abusers get IC symptoms while using that drug. Ketamine damages the bladder. The difference is those people get rid of bladder symptoms when they quit their drug, but IC patients are sick for life. I also have read that there's a vascular component to IC. Mitrovalve prolapse is found in most IC patients. The best I can figure is there is some multisystem disorder taking place in IC patients. I think this is also very much identical to CFS, it's a multisystem disorder. Autoimmune and neuroimmune may be the same disease with different manifestations in each individual. I think there is a core problem in all autoimmune and neuroimmune disease with various symptoms, and the location and nature of symptoms is contingent where stress or damage occurs on the sick person's body. Or genes- or epigenetics- might influence the ways autoimmune disease manifests. I hope answers are forthcoming about this, and again we need more research to get these answers.
 

Wishful

Senior Member
Messages
5,679
Location
Alberta
There's another factor that may be in play: ME affects neural function, which could include how our neurons read signals from the bladder and the signals we send to (and receive from) our sphincters. We could be overreacting to 'less than full' signals, and maybe our sphincter muscles are getting reduced signals and are sending a 'I'm at my limits. Let me release now.' signal.

Our brains aren't working 100% properly, so I think it's reasonable to find some body functions that are controlled by the brain not working properly either.
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
weakened collagen processes
Nerve compression has been mentioned, vagus nerve dysfunction (in having Autonomic Neuropathy for instance) can be something to affect proper functioning of the bladder as well.

If you have a collagen issue though, the bladder problems can be a part of a vascular compression problem with your left renal vein, Nutcracker Syndrome, so you might want to check that you don't have a significantly narrowed left renal vein (Doppler Ultrasound).

This may cause an audible sound (called a bruit) in your epigastric area which any doctor can listen for (via stethoscope) as a quick and easyily done screening measure.

Nutcracker Syndrome can affect vasopressin, antidiuretic hormone and a bunch of other things that are regulated by the kidneys and a significant amount of people with this also have low bp issues, not to mention also being a cause of POTS in about 20% of cases.
 

ellie84

Senior Member
Messages
120
Location
Italy
I have bladder issues, although a bit different from yours. It might be worth to see a urogynecologist or urologist, if it's impacting your life a lot.
My problems have been diagnosed as pudendal neuropathy. I get constant burning in my urethra. It's like having a very mild UTI but 24/7. Not fun :xeyes: Plus other symptoms too, lets say bladder is not functioning smoothly and automatically as it used to be. I have to think about it, constantly check the watch, check for bathrooms etc.
I suggest, if you can, wait at least 3/2 and a half hours before peeing again, otherwise it gets worse.
 
Messages
57
Location
Italy
Dear @Annikki, excuse me for the intrusion, can I ask you how do you feel after treating your IC? Have you improved in this rare condition?
You are the first person I know “really” diagnosed with IC (if I understood correctly) - except for myself, but my situation is extremely rare and strange. Actually I can’t try most therapies and what I tried did not work ... I hope some people succeeded in improving, because if they did it, I can do it too! :)
 

Mimicry

Senior Member
Messages
179
This is an interesting thread, I didn’t know anything about IC before. I’ve had bladder problems for longer than I’ve had ME. It started with a bout of consecutive UTI’s when I was 17 (IIRC my ME symptoms started when I was 19) and then the burning in my urethra just never stopped. My doctor told me that my urinary tract was just sensitized and that the pain would stop eventually. I learned to live with the bladder problems and noticed that if I don’t pee for a long time (say, 5 hours) the pain comes back immediately after peeing. That’s why I learned to drink a LOT of water during the day. Of course, if I pee too frequently, I get pain, too. Luckily it hasn’t been too bad to bother me in a year or so and frankly it’s just one of those things I learned to live with. Though I wonder if the onset has something to do with the onset of my ME.
 
Messages
57
Location
Italy
Dear @Mimicry, maybe I can help you in some way ...

I’ll explain. As I wrote in my personal story, the urinary problem is 99% of my torture. I have, between all the things, excruciating urethral burning 24/7, constant, which terribly worsens during and after urination. Sometimes it becomes deadly strong.
As for you, my troubles begun with continuous hemorragic UTIs since I was 10 years old (I am a male, now 19) and exploded even more after a Tuberculosis UTI.
I have extreme inflammation and ulcers on urethra and bladder, diagnosed as severe urethridynia (neuropathic and physical) and I.C. And clearly UTIs.

I suggest you these things ... I am not a doctor but maybe they can’t help.
1. Ok that you drink about 2 litres to clear urine: it helps in avoiding further fire and UTIs :thumbsup:
2. I suggest a neurological visit to evaluate pudendal neuropathy, which can lead to this sense of urethral burning when UTIs are absent. It can be a form of urethrodynia, vulvodynia, ... Supported by the fact that UTIs caused it.
3. I really suggest to avoid alcool, pepper, chocolate, coffee, ... For me they are poison, and alcool is death for the urethra (very strong for males) :cry:
4. If you suspect to have chronic UTIs, you can evaluate a bacterial biofilm in the bladder. I.C. is unlikely.

For any suggestion I can give you, please ask, I am glad to help! These years made me an “expert”, unluckily, in urological issues.
 

Mimicry

Senior Member
Messages
179
Thank you @Lord Randal! My bladder symptoms aren’t as bad anymore and I’ve also found out that drinking a lot of water helps. I’ve had these symptoms for 13 years or so (I’m 30 and have had the symptoms since I was 17), I should have probably specified that :D I had multiple bacterial tests taken after the UTIs and they couldn’t find any bacteria. I don’t think I have had a real UTI after that since the pain usually goes away in an hour whenever I get it.

Your symptoms sound horrible, I’m sorry you’ve had to go through all that :( Pain in urethra is probably the worst feeling I’ve ever had. My symptoms have never been as bad as yours but I can relate.