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Bladder obsessions.

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This is a letter I sent to my neurologist and psychologist:

"I'm never completely honest about the ocd, I think there's a level of embarrassment for me. But the ocd uses my bladder to control me. I have had to cut out so many things in my life to "comply" by "its" rules. OCD can most definitely make bladder problems much worse, it makes it hard to empty my bladder, there are even triggers that make me physically feel like I have to go. I may feel fine and be trying to rest or sleep and it may have taken hours to get to that point, and something as simple as 3 sentences, or thinking of something 3 times, anything with 3, or certain words that have to do with bladder will trigger a physical response and make me feel urgent when I was fine. It's very hard to empty as well, I'm just having ocd the entire time. OCD doesn't want me sleeping, completing tasks, or doing anything I enjoy, so I've had to cut out so many activities in my life there's not much else I can do besides sitting in a chair with a hurting bladder. I also fear having to get up and relieve myself because I'm just so fatigued, I don't want to have to get up, I guess that's where the dread comes in to play, the major fear while resting and sleeping is "I'll have to get up and go to the bathroom" and since I never feel "empty" it's always a huge battle. I now feel like I can't even watch t.v. and being this sick, it's about the only thing I CAN do, and again it's bladder stuff.

Just thought I would try to explain in more detail what is happening. It doesn't make any sense, I know, that's why I find it so hard to explain because it doesn't fit the typical pattern of ocd. 4 years of this and none of the medications we've tried or I'm taking have helped. My urologist only has one suggestion which is botox, but there's are risks with that and it may not help. I often wish I didn't even have a bladder and never had "worry" about it again like I have my entire life, then I could do what I wanted, rest when I wanted, and sleep when I wanted to.
If you have any suggestions for my psychiatrist in way of medication for ocd, please don't hesitate to call him - he is open to any and all suggestions. I take a lot of stuff at night and still don't sleep much (bladder and ocd) and am drugged and sedated all day next day.
More to add: I've had to cut out: reading books, watching movies, writing songs, talking to friends, chatting online, and now the ocd says I can't watch t.v. It's getting to the point where I can't do anything, otherwise I will have a bladder hurting like . So I still try to watch t.v. but I'm getting up a lot which is exhausting and my bladder is killing me the entire time. OCD can mess up how you empty your bladder and has done so for me for 4 years."
I have had to cut out most activities in my life that are enjoyable. I mostly lie in bed feeling like I'm dying and rotting. I'm not being treated for the pandas or AE I was diagnosed with because insurance won't cover treatment. My bladder hurts all the time, the ocd in my head is literally 24/7, I feel like it's not a part of me even, I can't "win" the battles any more, I can't get up to the bathroom 30 times to get relief.......... I'm a complete slave to this and it's making life feel like a curse. My psychologist said he's never worked with anything like this and he has 45 years of practice, my psychiatrist said he's never had a patient like me so fatigued and not respond to one single medication in 10 years. I cannot live life with ocd or bladder like this, it's impossible.

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Ophelia - we've had similar issues here. Dd's PANDAS started with overnight bladder issues. We took her to a ridiculous number of specialists, but she had no UTI's or other issues. Psych drugs were no help. I totally feel it's completely part of the OCD/PANDAS thing. She's had the bladder thing since she was 9. She's turning 22 today. Thankfully, the bladder frequency isn't nearly as bad anymore, except at night, as she's never been able to sleep well. I'm assuming that it's better due to the abx she's been on.

 

I'm not sure what all your doc has tried, but it seems to be high dopamine that is aggravating the problem (but the high dopamine is caused by some infectious trigger...) Unfortunately, finding the trigger is the hard thing. But it might be worth giving this info to your doc/psychiatrist:

 

This link is from Denmark, talking about PANDAS/PANS. Note they call it "Dopamine (post streptococcal)related autoimmune encephalitis"

http://pandasnetwork.org/wp-content/uploads/2013/07/Dopamine-related_autoimmune_encephalitis.pdf

 

This might be good to print out for him, concerning bladder and dopamine: (Link is at end)

Enuresis Pathogenesis

 

"The proposed condition PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections) has been used to describe a set of children who have a rapid onset of OCD and/or tic disorders following a streptococcal infection, with a link to other symptoms such as enuresis.[4] A broader classification of this hypothesis, PANS, has been proposed which states that some patients suffer these symptoms in response to mycoplasma or lyme disease or even viruses rather than streptococcal. PANS is an acronym for Pediatric acute-onset neuropsychiatric syndrome. This hypothesis describes children who have abrupt, dramatic onset of obsessive-compulsive disorder (OCD) or anorexia nervosa coincident with the presence of two or more neuropsychiatric symptoms. It is believed that these children experience a rise in dopamine levels as a result of a of cross-reactive anti-neuronal antibodies. The rise in dopamine can cause such side effects as enuresis, bed-wetting, and urinary urgency.[5]" http://en.wikipedia.org/wiki/Enuresis

 

You still have to find a doc willing to find and treat infections. With all your health problems, your autoimmune issues seem to be reacting to everything. (Same thing here, we just don't have the exhaustion you feel.) I know you don't tolerate meds well, but maybe your doc/psych can check dopamine levels and if high, try and get those lowered, to give you some temporary relief.

 

That being said, I can't remember what all you've been checked for. Has anyone checked for viral conditions - HHV6, EBV, etc. Has anyone checked your gut - clostridia and yeast overgrowth? Has anyone tested you for H. pylori? I think you said you've been checked for Lyme?

 

Hang in there. I so hope they can find something to give you some relief.

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