Topic: Those who have Interstitial Cystitis or bladder problems
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
This is aggravating. I think I have IC.
Once in a while I'll have annoying bladder symptoms... I'll go pee and then like right after I flush, I notice it feels like I didn't get it all out like I have to pee again. Sometimes it'll burn when I pee and even a while after I pee. Sometimes it feels like I have to pee, but nothing ever comes out no matter how hard I push. Sometimes there's pain in bladder area as well.
I don't believe this is a UTI because it'll happen a few times a month and then stop for a month or two and then I'll notice it again (and I've never had a UTI before). This comes and goes. So I believe maybe it's lyme related... but who knows!
Could this be lyme related or co-infection related? Or just lyme related?
Thanks!
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Probably a form of herx. Does it seem to come on when you're herxing?
My IC was so bad, that the ONLY time I was briefly relieved of pain was while I was peeing. After that, the pain would come right back. 24/7 pain.... It was severe. Ended my teaching career.
It's 80-90% better after Lyme treatment....so I hope it will go away for you!!!!
Stay away from acidic foods and caffeine. That will help a lot!
They probably have the diet listed there somewhere.
Hang in there!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:Originally posted by Lymetoo: Probably a form of herx. Does it seem to come on when you're herxing?
Sometimes it does, especially peeing frequently, ALL the time even if I didn't drink anything or drank barely anything.
But lately, I've been feeling okay and this decided to happen (burning while peeing and after and also feeling like I have to pee a lot but only a small amount comes out)... I was also off abx for 2 weeks and 2 days. Maybe being off abx, the lyme decided to go to my bladder? Not sure!
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
hmmm,
I have IC,
the bladder is a tricky little organ! I have something similar that will happen to me.
Have you noticed it happening with a certain food you eat?
Also, could be pelvic floor related, sometimes with lyme and company our pelvic floor muscles go into spasm and what we think is the bladder isnt.
When the PF muslces get tight, it can cause frequency, and burning with urination, and the feeling like little or nothing is coming out.
whatever you do, please do not strain. Stand up and sit back down and see if the pee will come out. usually this will work.
straining is very bad.
what abx were you on before you stopped?
bart, babs and lyme all have the potential to affect the bladder.
my llmd thinks babs is affecting mine, but who knows.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
Yes, could be because you were off abx. My LLMD says lyme loves to camp out in the bladder. It's a safe haven for them!
cant has some great advice and info there!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:Originally posted by cantgiveupyet: what abx were you on before you stopped?
I was on Biaxin and Bactrim, both two times a day. Gave me 4-week herx, let up on the abx, then started again and started herxing again. I was told by LLMD that it hits Babs, but some people here said it can hit all three, lyme, babs and bart.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Cobweb
Unregistered
posted
IC is diagnosable by a urologist and urodynamic testing.
My IC was diagnosed first clinically, but then I had a cyscoscopy and the doc took a picture of my bladder when it was "hyperdistended".
It clearly showed IC, chronic inflamation. I will be on Elmiron for the rest of my life.
I do believe this was brought on by Lyme Disease.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Might try treating yeast... even if you don't THINK you have a problem in the area.
posted
When I worked in Infection Control, co-worker (nurse) there told me to take high dose vit c (500 mg I think she said) before going to bed and it would take care of this sensation,etc. It worked great for me. She said probably caused by lyme or co-infection. She said dr would most likely give abx for it, as dr's give out prescriptions for abx freely for any and all but not lyme disease.
Corinne
Posts: 461 | From Abbotsford, BC, Canada | Registered: Oct 2003
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quote:Originally posted by Tincup: Might try treating yeast... even if you don't THINK you have a problem in the area.
Dear Tincup,
Could you kindly explain why this could be related to yeast? I am wondering because I have the same bladder issues and also strongly suspect I have yeast, but did not know they could be connected. Thanks so much!
Posts: 16 | From New Hampshire | Registered: Mar 2008
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posted
Yes on this one for sure. Nothing I have taken has helped. I have been on Detral LA and two other meds I can't remember at this moment.
They helped with the frequency somewhat but not with the urgency. I wouln't get the feeling like I had to go. Then all of a sudden out of nowhere, I had to go and I had to go NOW! If I didn't get to a toilet fast enough I would empty my bladder before even getting there.
VERY frustrating. I have to get up several times a night, go several times a day....even when I don't drink anything.
I get the burning. I had this during my Eurodynamics a few weeks ago. I went pee right after signing in. Then had to go again while the nurse was interviewing me. ARGH!!! I never feel like I empty it completey. Even when I am dying to go.
They want me to consider Interstim. Where a medal device is placed under the skin and wires are placed in the Sacral Iliac area. It sends imlplulses to the bladder not to spasm.
The MD I just saw at the Fibro and Fatigue Center said to hold off for now. I agreed. Seems a little drastic. She is 100% sure I have Lyme. She ordered the Ignex and two of the coinfections. Babesea and Irilichea. She said that my body is definately fighting an infection.
Believes the ICS will clear up when the Lyme is gone. You are not alone.
Posts: 109 | From San Antonio,Tx | Registered: May 2008
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posted
I had this for many years. I thought I was having multiple UTI's. Sometimes it would culture out,but most of the time it wouldn't. I literally stockpiled cipro, and if I even took one 500mg pill, the pain went away and usually would not return for a few weeks. I dealt with this atleast once a month for many years, and sometimes multiple times a month.
(BE PREPARED- THIS IS A LITTLE GRAPHIC) To try and combat this, I changed everything including my diet, how I wiped, hygeine practices, what my underwear was made of, what my toilet paper was made of, etc. I was scared to be intimate with my partner because I would usually be in so muc pain for days on end as a result. My doctor told me that my urethra must be short, and this allowed bacteria to colonize in my UTI. Of course, no explaination or help was offered if it did not culture out.
The pain from this was horrific, and at times I would end up in the fetal position. Then BOOM...it stopped and has not returned in years. I recently reviewed my symptoms with a new LLMD (Dr. J in SC) and he noted in his first report that "this was almost certainly neurogenic in nature." According to him this was absolutely Lyme related. Who knows. I'm just thankful I don't experience this anymore.
Maybe hitting the "keets with abx will eventually bring down the inflamation, and the subsequent pain.
-------------------- Mountaingirl
"What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson Posts: 138 | From West Virginia | Registered: Sep 2007
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posted
just food for thought... sometimes ic and similar symptoms related to genitourinary tract pain is actually due to spasm of the muscles in the pelvic floor as well as groin muscles. sometimes these muscles can be tight due to chronic invluntary/unconscious clamping down of the muscles/sphincters due to nervous conditions, tension, and pain itself. if this is the cause, things that help besides relaxation methods can be manual therapies that work on relieving the tension through myofascial release and facsial manipulations. you can read about this on the icnetwork website..search for pt. some people that practice visceral manipulation can be very helpful.
-------------------- do your best to educate the rest because 9 out of 10 doctors don't know jack about tick borne illnesses Posts: 437 | From shawangunk mountains, ny | Registered: May 2008
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posted
My 5 year old dd has this. We spent 18 months of h3ll trying to figure it out. Even the local teaching hospital said it was a yeast infection. I knew they were wrong because she was on a yeast-free, sugar-free probiotic heavy diet to little avail. Diet did make a difference, but it didn't solve the problem.
Well, dx with the BEST pediatric lyme md, he tells us it's lyme colonizing the eurethra. And if you read Buhner and others on lyme transmission, you see it's transmitted in urine!
Now on treatment for 18 months she's much better, no pain, no burning, less frequency and urgency. BUT even a few missed doses and she's having accidents and burning urination. I'm terrified that her life will be affected by this--AND SHE'S ONLY FIVE.
Goodness help us to get some research $$$$ on this lyme and TBD problem for her, for us, for those who aren't diagnosed.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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posted
I have had this for years - what helps me most is avoiding anything acidic or spicy or carbonated, and if it is acting up, drinking some baking soda dissolved in water seems to relieve it within a half hour. I recently discovered sodium bicarbonate (baking soda) tablets at the pharmacy which are more convenient, and help a lot. -k
Posts: 205 | From northern california | Registered: Apr 2008
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
NYjohn- im glad im not the only one familar with pelvic floor stuff.
I have severe PFD, and most of my bladder stuff is caused by the muscles. I am diet sensitive, but if the muscles are relaxed I am better.
The whole yeast thing is something I struggle to figure out, as I am now plagued with it again.
I feel better on Levaquin....go figure.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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