A Condition Worse Than Tinnitus: Interstitial Cystitis

Interstitial cystitis is tinnitus of the bladder: in the initial stages 24/7 you feel like your bladder is bursting, this is not relieved by voiding. It also makes falling asleep harder than falling asleep when you have tinnitus. Many people go on to develop pain.

Like tinnitus patients, interstitial cystitis sufferers have "spikes" that they refer to as "flares". These flares are set off by acidic foods (e.g., chocolate, tomatoes, vinegar), spices, alcohol and sex. So bland food and no more orgasms. Break those rules and the flare will drive you up the wall and prevent you from sleeping for several days or weeks.

Whereas many tinnitus sufferers report fading, interstitial cystitis never gets better. Of course it is also incurable. The body is thought to produce toxins (e.g., positive ions) that damage outer layer bladder cells allowing urine to damage the inner layer of the bladder. Eventually the bladder is covered in scar tissue and the volume of the bladder is diminished.

Some therapies alleviate the symptoms for some sufferers for a couple of months. There is also a drug that helps some interstitial cystitis patients. This drug causes some people to go blind.

In any case, you have got to thank your lucky stars that what you have is tinnitus and not interstitial cystitis!

If anyone has any ideas about how to get rid of those positive ions (ingesting negative ions?! where can one get those, other than breathing them in around waterfalls?), please let me know.

 

The following is a listing on EarthClinic of the various non-conventional remedies people have tried to treat their interstitial cystitis. I cleared up my own moderate case of interstitial cystitis with a very dilute chlorine dioxide solution. For many people, interstitial cystitis does get better. It's not incurable.

One woman wrote she was able to clear up her interstitial cystitis just by eliminating fruit. Most people should be able to get some degree of relief by experimenting with various natural therapies, ones that are unlikely to be recommended by their physicians (unless they go to a Naturopathic Physician).

Interstitial Cystitis
Natural Remedies​

• OVERVIEW
• EDITOR'S CHOICE
• MOST POPULAR REMEDIES
  • Multiple Remedies
    
  • Turmeric
    
  • Colloidal Silver
    
  • Alkaline pH
    
  • Alkaline pH, Herbal Remedies
    
  • Aloe Vera
  • Aloe Vera, Vitamin C, Marshmallow Root
    
  • Apple Cider Vinegar
  • Apple Cider Vinegar and Hydrogen Peroxide Douche
    
  • Apple Cider Vinegar, Baking Soda
  • Apple Cider Vinegar, Curcumin, Aloe
    
  • Baking Soda
    
  • Baking Soda, Peppermint Extract
    
  • Barley Milk
    
  • Best Bottled Water
  • Black Cohosh
    
  • Bone Broth
    
  • Cayenne
    
  • Chondroitin, Glucosamine, MSM
    
  • Cinnamon
    
  • Coconut Oil
    
  • Coconut Oil, Coconut Water
    
  • Colloidal Silver
    
  • Cornsilk Tea
    
  • D-Mannose
    
  • D-Mannose, Dietary Changes
  • Diet, Turmeric, Exercise
    
  • Dietary Change, Probiotics
    
  • Dietary Changes
    
  • Dietary Changes, Supplements
    
  • Distilled Water, Potassium Iodide, DMSA
    
  • DMSO
    
  • Enzymes
    
  • Flax Seed Oil
    
  • Gelatin
    
  • General Feedback
  • Goldenseal
    
  • Hydrogen Peroxide, Iodine, Organic Food
    
  • Interstitial Cystitis Remedies
  • Macrobid
    
  • Magnesium Oil (Transdermal Method)
    
  • Marshmallow Root
    
  • Marshmallow Root Tea
    
  • Medications for IC
  • MSM
    
  • MSM, Vitamin C
  • Multiple Remedies
    
  • Natural Bladder Distention
    
  • Ozone Installations
    
  • Pelvic Floor Therapy
    
  • Peppermint Oil
    
  • Pumpkin Seed Oil
    
  • Quercetin
    
  • Reader Feedback
    
  • Sea Salt
    
  • Test Your Urinary pH
    
  • Turmeric
    
  • Turmeric and Lemon Juice

Below is the introduction from the above EarthClinic link: ​

Healing my painful bladder problems:

"For years I suffered with over-active bladder and later Interstitial Cystitis. Major OUCH! I couldn't eat many foods, such as tomatoes or citrus, without it irritating my bladder. I would be up all night, needing to urinate every half hour. The symptoms were much like a bad UTI, of which I had many.

The doctors were of no help, often prescribing antibiotics, ever though the UTI causing bacteria was no longer found in my urine. The symptoms would come and go. Some weeks I would be fine, then the pain would mysteriously start up again. As the years went on, I soon discovered a pattern. Eating too much sugar, or taking antibiotics would bring on a serious flare. Yeah, I'm a slow learner.

After a UTI and being on antibiotics, I would be fine for about a week, and then the painful IC symptoms would return with a vengeance.

Then, while on this very site, Earth Clinic, I ran across a post describing exactly what was happening to me.

The antibiotics I had been taking had killed off the good bacteria in my bladder and had also given me a horrid sinus problem. I had read somewhere that the two issues usually go hand in hand, but I had never connected the dots.

I discovered I had Candida, an over abundance of bad yeast. The sugar I ate had been feeding the bad bacteria. So, this made sense. The yeast had created little holes in my bladder lining, causing certain foods to irritate it. This also made sense.

The cure, for me, was cutting way back on sugar, staying on a good diet, drinking lots of water and taking GOOD Probiotics. Lots of GOOD Probiotics! That was the real answer, but it wasn't cheap. I didn't care at this point and just bought them.

The good bacteria in the Probiotics soon over took the bad bacteria and healed the little holes in my bladder..."​

 

Thinking of how bad others may have it has never helped me...

 

Do you have this?

One of the most important things to do is find a decent Urologist since most are not good at treating or even diagnosing IC (chronic prostatitis has similar symptoms). So, it's like finding a needle in a haystack. Most will instantly prescribe Ciprofloxacin (and Naproxen for pain) since they don't know what else to do. Of course, it doesn't help and bonus, it's probably in the ototoxic list? I think so. Just say that you took it and it didn't help. You won't find anything online or anywhere supporting it as an effective treatment.

Second, there's few effective treatments other than diet and a bunch of other things you can try - some of those were already posted.

Pelvic Floor Muscle therapy is becoming a popular treatment to try. I don't know how effective it is or what the consensus is on its effectiveness or how often it helps people. But, it is safe and doesn't require drugs.

Here's a couple of links to check out:
https://www.ichelp.org/diagnosis-treatment/treatments/

https://www.physio-pedia.com/Interstitial_Cystitis

 

I have that or chronic prostatitis (and it is my understanding that the two might be the same condition).

That happened to me. I found the guidelines for treating IC, and there I found that if Ciprofloxacin doesn't work, they prescribe another antibiotic, and if that doesn't work, they prescribe one of the Cephalosporin antibiotics. I got a doctor to prescribe Cephalexin to me. The good news is that those Cepahlosporin antibiotics along with Amoxicillin are the least ototoxic antibiotics. The bad news is that this antibiotic is less likely to help than Ciprofloxacin.

For the past three nights I would wake up every hour or two and then take 15-30 minutes to fall asleep. But at least I haven't stayed up all night (thus far I've had four nights like that).

 

Turns out that unlike Amoxicillin, Cephalexin makes one feel exhausted...

 

@Bill Bauer, I am so sorry that you are suffering this. As someone who has a history of chronic UTIs and a diagnosis of IC, I can sympathize.

I’m sure you’ve looked into as many treatments options as possible. I just wanted to share that way back when my symptoms were really bad, I had a urologist recommend taking L-Arginine and spiraling twice a day. I’m sorry that I can’t remember the exact dosages, but it helped so much that I got to a point where I didn’t need the supplements anymore. I now take D-Mannose to help prevent UTIs.

My nutritionist says IC is an autoimmune disease, but then I recently read the testimony from @DebInAustralia where hers was cleared up by long term use of antibiotics.

I hope that you are able to find something that works for you.

 

A friend of mine recently told me that his wife had numerous root canals and decided to have them all extracted. After she did that, her experience with years' long, chronic UTIs immediately cleared up. -- I read a story once about an old "folklore remedy". Apparently in the hills of North Carolina back a 100+ years ago, if a person had some kind of intractable disease, they would perform a "last ditch" effort to try to save them; they would extract all their teeth. Apparently, about 50% of the chose to do that recovered from their life-threatening illnesses.

 

I've got a bladder problem at the minute and I was put on medication.

I have IBS and that can cause bladder problems.

I recently came off Oestrogen mini pill, and low oestrogen can cause bladder problems.

I recently came off Nortriptyline and that can cause bladder problems.

I recently came off Sertraline and that can cause bladder problems.

Bloody hell... I came off meds and now can pee for England... Too much info...

Anyone else have the same problem due to stopping medications?

Love,
Glynis

 

Hi @Bill Bauer!

How’s your Interstitial cystitis at the moment?

I am really sorry that you also suffer with this awful condition.

It’s funny, because I thought tinnitus was bad until I developed chronic lung problems. Now tinnitus seems easy in comparison.

How have you been in general?

Steph x

 

There is increasing evidence that many cases of interstitial cystitis may actually be a chronic/embedded urinary tract infection (UTI). The standard testing (dipstick and culture) has been shown to be pretty outdated and insensitive, missing the vast majority of chronic infections. Sadly, this reminds me of the audiogram and how poor it is at detecting hearing loss.

There is a team of researchers and clincians from UCL who treat chronic UTI (on the NHS and privately) with long-term antibiotics and the majority of patients improve significantly. Professor Malone-Lee of UCL has researched this for 40 years and treated over 7,000 patients at his clinic; in the vast majority he has found an embedded infection. There's a support group for this on Facebook where so many people have improved as a result of this treatment after being unsuccessfully treated for interstitial cystitis for years. I also contacted a scientist who confirmed to me that standard testing is often inadequate.

There is also an American doctor, Dr. Stewart Bundrick, who treats chronic UTI with long-term antibiotics. Unfortunately, there aren't many specialists who are willing to treat this properly or even recognise chronic UTI. Yes, long-term antibiotics (often for a year or more) aren't ideal but the London clinic almost exclusively uses first-generation narrow spectrum antibiotics because of the favourable safety profile.

@Steph1710, so sorry to hear you are suffering from this too. Would you be able to get a referral to the NHS LUTS (lower urinary tract symptoms) clinic at the Whittington Hospital in London? I think they take referrals from all over the UK and are the only specialist NHS clinic for this issue.

There are some good sites with more information:

• The UK-based Chronic Urinary Tract Infection Campaign
  
• Chronic UTI Australia
• Recalcitrant chronic bladder pain and recurrent cystitis but negative urinalysis: What should we do? — Here you can find data from the specialist clinic in the UK
• UTI test often fails to detect infection, say researchers

 

Serendipity, you’re so kind <3 but you must have read my post wrong. Thankfully I don’t suffer with any bladder problems, just my lungs instead.

Finally, after a year of battling, I have been referred to a lung specialist - which is amazing! Hopefully, one day I’ll be able to breath!

Seems like we all have so much more going on, besides the dreaded tinnitus - which is like the icing on the cake really.

Hope you’re as well as you can be x x

 

Oops I totally misread that! Glad that you have been referred to a specialist and I hope you get some answers and some relief for your lung problems. It must be so tough but all we can do is persevere. X

 

Hi @Steph1710 -- I don't know if you have any interest in "energy medicine", but I found the lung energy exercises outlined in the following video to be remarkably calming. It may take a couple minutes or so to start feeling a shift, which may be subtle, or much stronger.

The energy exercise [for lungs] I most recommend for coronavirus health -- 7 min.

 

Maybe this would work for tinnitus? Hard to imagine yanking out all you teeth would help the area around your jaw. I'd try it before death though.

 

Hello,

I don’t post often, but I do have chronic UTIs. Mr. Bill Bauer may want to get a MicroGenDX test. IC is just a waste basket term because doctors are not educated enough on how to treat chronic urinary infection and because of the super bug issue we have going on. It’s a horrible condition and it is life changing. I actually got tinnitus because I had a UTI that was resistant and I had to go on IV Gentamicin. And then tinnitus just changed my life even further. I was super depressed for a long time. I did pray a lot because I’m a person of faith but it has been a hard journey to have both issues.

Even right now I have a sinusitis and was terrified to be on so much medication because

1. I don’t want for the UTI to become resistant - it fights when it’s threatened, and

2. I always wonder how it will or if it will change my tinnitus.

I’m going to a specialist for UTI in Louisiana who follows Professor Malone Lee’s approach of long term antibiotics. I make the trip in June. It’s the hardest decision I’ve had to make about this. I’ve been in constant pain and am living on herbal remedies because I’m terrified to use antibiotics, but it’s been a long time and my quality of life has gone down. Mr. Bill Bauer may want to try Cryptolepis. It has really helped. MicroGenDX testing is essential - if you have a physician willing to use the report. They also have physician they can recommend in your area that use them.

 

Have you tried adding a cup of hydrogen peroxide to your wash every time you wash your underwear and towels? It sounds ridiculous but it costs next to nothing to try. Laundry machines breed E. coli and all kinds of germs which irritate that area. A long time ago I used to have chronic UTIs and that small change completely fixed it for me.

 

I believed that I had interstitial cystitis when I had a bladder problem last year that was actually benign. Basically, I wanted to go to the toilet every 5 minutes. My bladder also hurt when I was sitting on a chair. It was horrible, worse than tinnitus. I was so obsessed and scared that it made me less aware of my tinnitus.

Fortunately it went away. The urologist I saw gave me a drug to relax my bladder neck, and it worked.

 

Hi Lane!

Thanks for the link. I did start to try it, but ran out of time. I shall have another watch tomorrow on my lunch. Anything that calms my body is a good thing.

I appreciate your help - it’s most welcome.

Steph <3

 

How are you doing, Bill?

 

Ah dude, I get random interstitial cystitis sometimes. Burns like hell has relocated to my urethra. I can't imagine how bad it would be to suffer from it regularly.

Just drink lots and lots AND LOTS of water when you get it... that's the only thing I've found that works.

 

Appreciate the advice @lcj, but in my underwear's case it's going to have to be something a little stronger... like hydrochloric acid for example

 

You’ll never know until you give it a try and in any case your clothes will be cleaner and whites whiter!

 

@Bill Bauer, my best friend has IC. She was in hell for about two years before trying the autoimmune protocol (AIP) diet. Hers cleared up within a month of eating strictly AIP foods. She has introduced a lot of foods back into her diet. Sometimes if she cheats a bit too much she’ll get a minor flare but then goes back to eating clean and everything clears again. Perhaps something to try.

 

Are you sure you suffer from interstitial cystitis and not chronic pelvic pain?

I got the latter one and yes it's a traumatic condition out of hell. I am better now than 3 years ago from stretching but my life is not the same.

Good luck to you.

 

Hello @Bill Bauer, my bearded friend.

Hope you're feeling better.

 

This is a very good observation. I have been dealing with some pelvic pain on and off lately (since beginning of January) and my "research" lead me to discover that a significant number of people with "generic" urinary tract symptoms has, in fact, some form of muscular pelvic floor dysfunction. There are quite a lot of (ok, unverified) success stories throughout the whole internet of people whose symptoms dramatically reduced after some weeks / months of persistent physiotherapy. I am two and a half weeks in to my stretching routine and I have to admit that my symptoms (which were although mild, lower moderate at most) pretty much vanished. I have also been taking 400 mg of Quercetin twice a day.

 

There is an IC diet specific for this condition, which I suspect I have. More devastating than tinnitus. I don’t understand why we have to have two chronic conditions in life. Isn’t tinnitus punishment enough?

I wonder if the diets are similar.

 

Hi @Forever hopeful -- I've made several posts on natural treatments for IC. Here are the links:

Post 1 -- Post 2 -- Post 3 -- Post 4

 

Sounds like a dreadful condition. I used to have a condition called key in the door syndrome. It cleared, amazingly - when I got divorced.