I was wondering if anyone has had the same experience, as this is really ruining my quality of life. I have been ill about 4 years now, but for the past year I have had this really bad bladder issue that seemed to be triggered by lots of intercourse with my partner.
Since then I went to the doctor as I thought I had a UTI-I was going constantly and my bladder just felt irritated. They found a little bacteria, so gave antibiotics, but NOTHING helped. They kept saying it may be resistant and we tried 4 different antibiotics, and still no improvement. They retested my urine and there was no bacteria, but the urgency and frequency remained.
I went to a urologist and they did a renal ultrasound as they found microscopic blood in my urine, but that checked out fine and kidney blood tests are completely normal.
My urologist was stumped and concluded saying it may be interstitial cystitis, but nothing is helping to stop these symptoms, and it is really impacting my quality of life. I literally go to the bathroom every 15 mins. Sometimes I feel like my bladder is restricted or being squeezed and hardly any pee comes out. Other times it does. As soon as I need to go it feels super irritated and just uncomfortable. I wouldn't say it is pain, but more so just uncomfortable. Has anyone experienced something similar?
Posts: 28 | From Virginia | Registered: Jan 2017
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posted
You could be tellin my story! I am the same way! I am wondering if I have Lyme disease,as I can't find a Dr here that is Lyme literate,and when I pushed for a test,,they did the easy,cheap test (?) which almost always has a "false negative",I've been told,even when you DO have it! So I'm trying to piece together my multiple symptoms,and this happens to be one of my worst. My hubby gets so frustrated that I don't want to be intimate,but its painful! And my bladder is always so "angry" for days after!
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Have you tried anything like taking baking soda 3 times a day, empty stomach?
If this changes something (getting better), it may be infection (undetected)?
Have you checked your urine pH?
Posts: 6199 | From Brussels | Registered: Oct 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Yes, ladies I've been dealing with UTIs for several years now. It started after I used a jetted tub in a casino hotel.
Quit trying to test it because the lousy labs won't find the bacteria. Some things I've learned that helps.
Make sure you urinate immediately after sex. Do not do jetted tubs. Don't sit in baths with any type of soap used. Detox baths using Epsom salt and baking soda seem to ok.
Antibiotics also seem to be worthless and I tried many different ones.
Brussels suggested baking soda and that is helpful. Especially the day after sex for a couple days. Mix a teaspoon in water and drink it down. A couple times the day after sex.
If you decide you need to drink baking soda more often in the daily routine for prevention, just do it once a day with the 1 tsp.
Your can also use something called Diatomaceous Earth Food Grade ONLY, aka DE. Do some research on that.
There is also a supplement called Berberine that is also very beneficial. I took 1200-1600 daily for a few years and it really helped until one day it didn't.
If this three things don't help you, I really recommend you do tons of research on Mycoplasma bacteria by Dr Rawls, who was a Gyn until Lyme took over his life.
If it is Mycoplasma(another co-infection of Lyme that is overlooked too often) that resides in the kidneys and bladder.....then a full out attack of that bacteria with many other treatments will be needed.
Remember these infections in the urinary tract can lead to serious kidney problems.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Interstitial Cystitis bladder pain is disgustingly painfully.
It took me a good 6 months to get it under control.
First, get a report of your urine culture. My test reveled an 'unindenified organism' which I believe was Bartonnella.
My urologist treated me the standard therapies, including prescription hydroxyzine, an antihistamine. Didn't work.
I also had a surgical procedure called a bladder distention, in which they blow up your bladder with air to stretch your bladder. Didn't work.
I started taking D-Mannose 3x a day. The pain was unbearable. It didn't work.
I then had weekly catheder treatments in which they inject your urethra with a numbing agent and or antibiotics. It slowly offered relief.
But what really worked for me ? I accidentally discovered a prescription med my neurologist ordered for another ailment. It eliminated my bladder pain completely. It is called gabapentin. I took a low dose of 100mg 3x a day. Instant relief. I even suggested to my urologist to think about offering this as a treatment option. What sweet relief. Hope this helps.
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
I don't really know what "fixed" my IC pain. Yes, it is unbearable. It ended my teaching career at age 43.
I had DMSO treatments, heparin (both instilled), and who knows what else. I can't remember all of them. Had the bladder distension done twice. The first time it helped and the second time made it worse. That is when I had to quit teaching.
My pain slowly got better after retirement, but didn't get to 80-90% until I went through treatment for Lyme and babesia.
Every once in awhile the pain will come back and it seems to be out of the blue. I still have constant and frequent trips to the bathroom.
I know it is also linked to my Mast Cell Activation Syndrome. Many with MCAS also have IC.
Taking cromolyn sodium also helps the pain.
The D-Mannose keeps me from getting infections. I'm at 100% on that for the past 10 years.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Interesting feedback. It sucks because IC seems a really big issue for lyme, and it seems incredibly hard to treat. My doctor doesn't treat IC because she isn't specialized in this.I can ask her for a referral though.
I know bart causes bladder issues, but can it really be to this extent?
Posts: 28 | From Virginia | Registered: Jan 2017
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
the baking soda or any strong pH change of the urine seem stupid, but see the posts above ----- how many people this actually helped!!?!!
The urinating after sex is also a great tip (got this tip LOOOONG ago from gynecologist, it REALLY helps).
It could also be E. coli, specially if you got after sex.
If you wait until it get chronic, it gets harder to solve. But knocking it down at first day is the best solution.
Whatever stuff that binds toxins helps too (like Map suggested, DE is also helpful).
I take chlorella + bear garlic, but lately been trying with spiruina + wheat grass, and I got good results too.
MSM in great amount is another tip. Whatever that binds toxins will help, because that is what causes IC (in my opinion).
The moment you feel urine gets acid, that's the moment you get IC. If untreated, it goes up to kidneys...
I swear the in the kidneys it is EVEN WORSE (pain, suffering, and feeling you're going to die).
And it is EVEN more stubborn in the kidneys.
So before letting it go until there, taking stuff that make your pH high very fast (whatever you find!!), taking binders in great amounts (they also raise the pH and bind to neurotoxins like heavy metals that ARE the main cause for bladder infections in my opinion) treats the toxic part of the problem.
If you add whatever immuno help like cranberry or whatever people suggest, is a plus (at least they help with minerals, antioxidants for more long term, because taking baking soda is just a temporary solution to correct the pH in emergency)...
In desperate times, I did nosodes from my own urine (very diluted), and they never failed (but they take longer than the baking soda + binders above)...
The antibiotic solution was what I did in the past, but the more I read about chronic antibiotic resistant strains, people suffering months, even years and not finding solutions, I decided to avoid abx at all costs.
That is what I learned due to extreme suffering and pain from IC. It's been quite under control lately, but I still can get it during a DETOX phase (specially with chelators).
Posts: 6199 | From Brussels | Registered: Oct 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Fingers crossed Brussels, I might have found the kidney/bladder bad guy I've been fighting for too many years.
Mycoplasma has been my target for the last several weeks with rife. I stirred it up bad in the urinary track, but finally there's been no urethra pain for 5 days.
It's my dream to be over this horrific pain.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
I just started having what feels like urinary tract issues almost 3 weeks ago now. All tests so far have come back normal. No UTI or anything else.
I have been doing some research online and discovered that Ureaplasma can sometimes be the cause of urinary symptoms when regular tests come back normal. Some people that thought they had IC actually had Ureaplasma and once treated they were fine.
I just had my doctor test me for it yesterday. Not sure how long it will take to get the results but will see what it says.
Another possible cause that people can check into is endometriosis of the bladder. It can cause symptoms that mimic IC or UTIs etc. This is something I will be checking into as well if nothing else turns up. My GYN already suspects that I have endometriosis so this could be a possible cause for my bladder issues as well.
Anyhow...just wanted to let everyone here know that Ureaplasma and Endometriosis of the bladder are two things that you may want to check into if you are having chronic problems and have gotten no answers.
Hope everyone finds some relief.
Pam
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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Map1131...Ureaplasma is a mycoplasma so that could be why you are having success targeting mycoplasma with rife. If rifing isn't able to solve the problem then you might want to consider getting tested for the Ureaplasma.
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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i have had pain similar to what you describe. It was so bad my urologist was giving me topical lidocaine to put on my urethra so I could urinate. I tried everything but it seemed to leave as quickly as it appeared after suffering for 4 months. It was just gone. My urologist said she suspected it was caused by a herpes virus. I had tested positive for two types as well as epstein barr. I was negative for interstitial cystitis. I hope you find some relief. Mine was the worst pain I had had in my life at times.
Posts: 41 | From CA | Registered: May 2017
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posted
I had major bladder problems, too, so I totally relate.
I have Interstitial Cystitis, caused by Bartonella. Have your LLMD test you for Bartonella, because Bartonella is known to attack the bladder.
I would switch to a fantastic urologist, and be sure to get tested for Interstitial Cystitis. The medicine for it is called Elmiron and it healed my bladder significantly. IC symptoms are greatly linked to diet. Completely eliminate spicy, citrus, and acidic foods. They will cause symptoms to flare. When your bladder is bothering you, eat raw pumpkin seeds and drink aloe vera juice. These things will help you even if you don't have IC, so they're worth trying now
Also, in case you do have IC, don't drink cranberry juice, because that will upset your bladder
Posts: 241 | From New Jersey | Registered: Jan 2015
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How do you test for IC? I didn't think there was a test. Weirdest thing is, since I wrote this post my bladder issue disappeared for a couple of weeks....then it comes back. Super odd.
Posts: 28 | From Virginia | Registered: Jan 2017
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And sometimes that won't diagnose it. I had a bladder distention under anesthesia to diagnose mine. It's also "therapeutic" .. since it USUALLY helps the IC.
The second time we did it .. it made me worse.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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You have mentioned oxalates before. Do you think they have any bearing on your problem? Or did you try the low ox diet and not get relief?
Posts: 832 | From Somewhere | Registered: Nov 2010
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My hubby gets so frustrated that I don't want to be intimate,but its painful! And my bladder is always so "angry" for days after! 
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