Tinnitus & Interstitial Cystitis

So I've had a moderate level of tinnitus for around three years. It's a high pitched ringing in my right ear, audible over most conversations. When this first developed I honestly thought I'd never be able to live with it. I'm a very anxious person and I struggle with normal life sometimes, let alone with this torment on top. But I amazed myself and with time and a lot of effort, I'm now (or at least was) totally at peace with it.

This has changed as over the last few weeks I seem to have developed Interstitial Cystitis. All my UTI tests are clear and the docs don't know what's causing my bladder pain, so I've been told it's IC and I just have to live with it.

I'm now back into a world of having to come to terms with a chronic condition that's driving me crazy and putting me in a lot of discomfort. What's worse is that it seems to be unravelling all the hard work I put in habituating to the tinnitus. I now find myself obsessing over the ringing noise,
especially at night.

I'm on the forum to find support and also perhaps find other people who live with both tinnitus and another chronic condition on top.

M

 

There is lots of awareness being raised for interstitial cystitis.
https://www.ic-network.com/

So sorry what you are going through. Consider trying to get a disability lawyer.

 

I suffer from this as well! I remember when tinnitus started. I was up all night. I have had problems since 2006. Tried DMSO, Botox. I just learned to live with it. I used to want to have my bladder ripped out. I am now kinda used to living with it. Tinnitus has made it feel like it was nothing...

Just like tinnitus. I was told there is no disability for IC.

 

Hi, and welcome.

I don't believe in IC. It is simply a label practioners use when diagnostics fail to find the root cause.

In short, I suffered with a lifetime of UTI symptoms; rarely managing to grow bugs in a culture. I, too was labelled with IC. I am now completely symptom free.

Since then, I have discovered that bugs can hide in biofilms. That is why commonly used tests fail to detect the presence of infection, and why antimicrobials in low doses, and in short bursts simply do not work.

I was fortunate to find a compassionate and knowledgeable doctor in London, who specialises in testing and treating persons such as yourself.

I will share more if interested.

In short, biofilm infections can adhere to your urothelium and cause UTI symptoms. They can also embed into the wall of the bladder; essentially, hiding from your immune system, diagnostics, and antimicrobials. This has been proven through biopsies taken from chronically infected bladders.

Urine cultures are inaccurate. Dip sticks even more inaccurate.

Your symptoms are real, and most likely linked to a chronically embedded infection.

Finding accurate information and support is the main issue. There are groups set up for patients of this UK based Dr, as well as a nurse practioner from the United States (who formerly suffered with *IC* herself, only to be cured when the root cause was finally addressed = biofilm infection)

If you want more info, I'm happy to share.

https://www.theguardian.com/society...ief-for-women-with-chronic-life-changing-utis

 

The Reddit support group for Interstital Cystitis has memes about getting denied disability income.

SSI's standards are extremely high, no amount of human suffering will get one disability income.


Q: Why can't the bladder be surgically exposed while a doctor applies an anti microbial agent?

A: Because medicine is all about the cheapest possible options. Behavioral therapies that force psychological rehabilitation and pain killers are cheaper then biological sciences. It's all about avoiding risk and choosing the safest option.

 

Wow, thanks so much, this was a real eye opener! My cultures are negative so my doctor is refusing me antibiotics and trying to give me medication for an over active bladder. This medication will affect my balance and make me unable to drive so I'm refusing to take it. I feel ignored because I know the symptoms of a UTI and I know that's what I have.

I'm so happy that you finally found relief. Does this doctor do self referrals?

 

LMAO

it's probably just like "hyperacusis" in which many subtypes exist.

 

I don't agree.

 

So sorry you've had to go through this too, it seems very unfair to have to cope with both T and chronic bladder pain I'm lucky in that I feel I've made peace with the T, but it took a really long time and whenever I'm run down or having a bad time (like now) I start to become hyper aware of it again. Have you thought about the long term antibiotic treatment available via the clinic mentioned above? I'm a bit worried about possible T interactions with long term ab use but will give anything a try right now

 

I'm in the UK and could probably get disability for my long term anxiety problems. I hope to avoid that route, I love my job and its really the only thing I enjoy in life. I'm actually terrified of having nothing to do all day apart from think about my T and bladder pain.

 

I have both also

 

IC is really awful.
Mine calmed down recently.

 

I forgot to mention I had 4 bladder distentions which made things worse. They did prescribe really expensive anti-inflammatories that was giving me hives & 0 benefits. I just stopped bothering when nothing helped (can anybody else see what a crappy and incompetent medical system we are stuck with with the lack of true help with both these conditions?) All we really have for tinnitus is pseudo TRT snake oil which practitioners are in for the Benjamins & MCBT which is even more useless. I am in Canada it would be expensive to go to London. I guess it's no different than folks going for Lenire. I don't really have bad bladder pain, just piss all the time. I don't help myself with consuming caffeine & red wine. It all started when I told my GP I was urinating a lot. I wish I kept my mouth shut. Tinnitus has made IC take a backseat.

 

https://www.booktopia.com.au/cystitis-unmasked-james-malone-lee/book/9781910

I see Prof Malone Lee (based in London) has written a book on this very topic.

As an Australian patient of his, I was required to get a GP on board, who would then communicate with the Prof regarding diagnostics (unspun, immediate urinary cell count) along with treatment (I did Nitrofurantoin for 8 months, then turned to herbals and acupuncture with an eventual diagnosis of Lyme and coinfections)

If you are UK based, you could try contacting the Prof at his London based UTI clinic. I'm not sure if you are closer by if you need a referral. I'm sure if you call them, they'll be able to advise.

If you are wanting to see Malone Lee, I can put you in touch with his Facebook group, where you will find you are not alone!!

Ruth Kritz is a nurse practitioner in the United States, who may still offer consults. There's an associated Facebook group for her patients.

Nothing infuriates me more than the ignorance that surrounds biofilm UTIs. Many of us have been debilitated by unrelenting pain that has a very real physical, readily treatable cause = infection!

I hope this helps you.

 

So sorry.

I've had a few hydro distentions.

Would make my symptoms worse too.

Prof Malone Lee said it would have been because the HD releases embedded bacteria into the bladder cavity, causing acute symptoms.

 

I can always go back to my urologist with this info... I did get acupuncture as well. It never helped. I have "habituated" to it. Now if I could with this *&^% tinnitus...

On a more positive topic it is my 22nd anniversary today!

 

Feel for you Bob.

All those years of unnecessary pain and suffering completely eliminated now for me with the right treatment and diagnosis.

Good luck with your urologist. I saw 4 urogynaecologists and several GPS, before I found an integrative doctor who was thankfully, open to the concept of hidden infections.

All the best.

 

I am on amitriptyline and it has helped ALOT. basically eridacated all my symptoms. Worth a try.
If you choose to, start 10mg, see how you go.

 

Did you do anything particular or did it just do it on its own?

 

Oh that's good to hear. Glad you got relief! I'll mention it to my GP. Thx

 

On it's own. It became softer.

 

@Magpie101 hey Magpie I have had IC for many years. Happy to chat about what has helped me and what has made things worse! X

 

I was diagnosed with fibromyalgia last year. I got really scared at first, thinking it was a horrific chronic condition which would attack the body relentlessly.

Then, when I looked into it, I saw that it was actually just a name given to any instance of unexplained pain.

The way I saw it, that meant it was a useless diagnosis. They may as well just say 'I don't know'. Then at least people could continue to look for a cause, instead of assuming this would be them for life.

Sorry to hear what you're going through, @Magpie101. Like you, I am a very anxious person, so it has helped to me to hear that you were able to habituate somewhat to your Tinnitus. When my chronic pain started, it was suggested that my symptoms were psychosomatic, brought on by my anxiety. I'm not sure whether I believe this or not, but I can tell you that the chronic pain eventually went away.

 

Looks like you haven't been back in awhile. Separate from the IC since you are an anxious person like me it could be pelvic floor dysfunction. A lot of doctors don't know about it but can cause multiple symptoms.

 

@Magpie101 hope you are doing okay. I have had IC / pelvic pain syndrome for a long time and it got a lot worse a couple of years ago. It’s now manageable for the most part. I remember how awful I felt when it started and I spent a fortune on different remedies and crying on the toilet and in urologists offices! Feel free to message me if you want to chat about my experiences and what helped / didn’t help x

 

@Magpie101

I’m new here and this is my first post. I’ll just throw this out there since I haven’t seen it mentioned. My tinnitus started around 2015, the same time as my other strange symptoms. It wasn’t until this past weekend that it has become loud enough that it’s hard to ignore. Strangely, my bladder has been relentless since the same time giving me an urgency to pee every 15-20 minutes.

I’m a lyme (plus coinfections) patient and both of these symptoms are very common with my diagnosis. I’m not saying you have lyme but it might be worth looking into if you can’t seem to get anywhere with doctors. I’d feel guilty if I didn’t at least pass that along. I went from zero anxiety to monthly panic attacks as well, another common theme in the lyme community. You may have a tickborne infection. Good luck.

 

Bartonella likes the bladder...

 

How are you feeling now, @Magpie101?

 

I have both also, remember that for interstitial cystitis the diet is crucial. The best way to help in long term. Also I've had Cystostomy for over a half a year to administer drugs directly to the bladder to avoid any possible complications with tinnitus and to get high doses of meds safely (because of the prostate I couldn't bear normal procedure, as female you're in much better position and could avoid Cystostomy completely. Male patients are pretty rare, I'm first in his career and sadly, thanks to prostate that goes hyperreactive because the bladder inflammation is pretty close, male patients suffer even more).

If you live in Europe I can give you a contact to my Polish Professor under whose care I am, he's also a researcher of this disease if I'm not mistaken and his points of interests are well, bladders. He's somewhat famous here, people all over the world are visiting him. I just know he could help you, I have my faith in him. He will never tell you just to live with it, there are ways to help and I don't mean CBT or similar bullshit.

 

Diet did nothing for me. Just so you know, it’s a very complex disease and very situational.