Bladder problems! ! !

[Guest]

I've had bladder problems starting when I was 6 or 7 years old. I was eventually diagnosed as IC, but NOTHING helps.

 

It hurts painfully and urgently all the time and never feels empty. It has disrupted my sleep and life all my life, and my ocd is consumed by it - it is on my mind all the time and attached to all kinds of things - ruining my life.

 

I truly do not know what to do. The treatments of restoring the lining of the bladder don't work. Bladder installations didn't help - got infections. Interstim didn't work. Bladder expansion - didn't help. Tried most bladder medications unless they are new, none help.

 

I've been reading that a lot of lupus patients have "lupus cysitis" and right now we're checking heavily on the lupus as I have all the symptoms. Does anyone know if this could be autonomic or inflammatory in origin?? I don't think they investigate the latter.

 

I went to shands too and they had no idea what to do, we discussed botox but insurance won't approve it. Sometimes I wish it could be removed and I would never have to worry about it again!!!

 

Has anything helped y'all?

Edited December 9, 2013 by Guest

[JoyBop]

That's sounds so uncomfortable. Has anyone ever ordered a cystoscope? That's a scope that can look inside for inflammation, ect. My mom just had one done for what she thought was recurrent bladder infections only nothing ever grew out on cultures. It turns out her diet was the cause. Look up foods that can irritate the balder and see if that helps.

 

Of course my first thought was...isn't that a classic PANDAS symptom?

[mdmom]

Ophelia...

 

I cannot remember your history, but have you been treated for Lyme & Co?

 

My daughter has dealt with bladder "spasms" (for lack of a better word) just like what you describe. She would take Urelle when she was symptomatic. But our LLMD said it was caused by Bartonella or Babesia - can't remember which one.. The spasms went away when she was treated for Bart and Babs. Also our LLMD just told me about another patient of her that has been dx wih IC for many years, has had multiple surgeries and had no relief from any treatment - but when she was finally treated for Babesia, her bladder issues calmed down. When the patient stops Babesia tx, the bladder symptoms return.

[anonymous0121]

That's sounds so uncomfortable. Has anyone ever ordered a cystoscope? That's a scope that can look inside for inflammation, ect. My mom just had one done for what she thought was recurrent bladder infections only nothing ever grew out on cultures. It turns out her diet was the cause. Look up foods that can irritate the balder and see if that helps.

 

Of course my first thought was...isn't that a classic PANDAS symptom?

my son has this same problem and we have been to tons of docs, finally did a ultrasound and it said inflammation indicative of IC, but cant find a doc to do anything about it. citrates/citrus etc make it worse so we manage diet, Dr theo theoharides from tufts university has a lot of research on IC and autism and mast cell activation disorder, you might want to look that up, he recommends some natural products for the inflammation. My son has dysautonomia so I also wondered about that connection, too sympathetic.

[LNN]

Have you had a comprehensive metabolic panel done? Potassium, sodium. choline levels all affect the sense of urgency and electrical impulses.

[anonymous0121]

Have you had a comprehensive metabolic panel done? Potassium, sodium. choline levels all affect the sense of urgency and electrical impulses.

thank you for the info, we just did cmp and his sodium was 144 (ref range is 135-146 - not sure if it is for children or not, waiting to hear from doc) - I give him a little sea salt for his adrenals and dysautonomia

his potassium is 4.4 ref range 3.8 - 5.1

don't see a choline, just a chloride which is 104 ref range 98 - 110.... does any of this seem as a cause?

it is so bad now he is litteraly peeing his pants uncontrollably, his nervous system is so jacked up on adrenaline 24x7, I cant find anyone to address it. He cant sleep, crazy luny hyper, rages cycle almost hourly and his penis hurts after urinating (I thought this was the hyperoxaluria but now not sure, maybe yeast? and he cries his legs hurt, stomach and chest (constant panic attacks too). anyone have any ideas, he has been suffering like this for many months. the tics are unbearable too.

[anonymous0121]

Ophelia...

 

I cannot remember your history, but have you been treated for Lyme & Co?

 

My daughter has dealt with bladder "spasms" (for lack of a better word) just like what you describe. She would take Urelle when she was symptomatic. But our LLMD said it was caused by Bartonella or Babesia - can't remember which one.. The spasms went away when she was treated for Bart and Babs. Also our LLMD just told me about another patient of her that has been dx wih IC for many years, has had multiple surgeries and had no relief from any treatment - but when she was finally treated for Babesia, her bladder issues calmed down. When the patient stops Babesia tx, the bladder symptoms return.

do you mind sharing your LLMD with me privately and also how you treated the bart and bab, we have done so many treatments for years with this but he just crashes with each treatment, so sensitive.

[dut]

Thinking along the mast cell line, would a trial of something like Cromolyn, the mast cell stabilizer, be any worth?