Does Pots Cause Chronic Urinary Retention?

[Soulshine]

For the past year or so, it takes me at least an hour(and usually longer, unless I give up) to empty my bladder. Sometimes I don't have time to just chill out on the toilet so I am usually walking around with a full/semi-full bladder. It is really uncomfortable and I am constantly bloated and my hands swell. Sometimes I don't even get the urge to pee but I can feel the pressure and sometimes pain.

Is this a pots thing? I have a hard time getting my doctors to really listen to me. I cant afford to travel and see a dysautonomia specialist at this time. I have a primary who believes dysauto and fibro are the same things and a cardiologist who thinks that I should be able to "push through" pots symptoms since they are not "dangerous." I have mentioned this to my doctor and he keeps telling me to drink cranberry juice.

I am starting to get nervous because I have tested high on the ANA test, and was unofficially diagnosed with Lupus. Due to insurance issues, I have been untreated for two years just barely managing on life style changes. I know lupus causes kidney disease in some patients. I plan on seeing the rheumatologist who ran those tests, but even that will have to wait until I can afford it.

I was just wondering if this is a POTs thing, though. Maybe it would put my mind at ease to know that I am not alone. Not knowing makes me panic. I'm only 21 if this helps. My age is why no one really takes me seriously.

[E Soskis]

I'm sorry no one will listen to you. I also began dysautonomia symptoms in my early 20's....it was so frustrating to be treated like I was a "crazy" person - It seems that the medical professionals are dismissive when they don't understand something - it's easier to put you off than to take time to figure things out - lack of affordable healthcare is also a big issue -

I have urinary dysfunction from my dysautonomia and I do not have POTS - mine is autoimmune in origin. I have had urinary retention for many years and have fought off urinary infections due to retaining urine. The sensation to urinate has greatly diminished and I often do not even know I have a bladder that is about to pop - sounds like you really should have a work-up by a urologist to test your urinary dynamics and scope/scan your bladder. If you indeed have Lupus, this could be a serious issue as this disease can invade kidneys and bladder and do permanent damage without appropriate treatment.

I don't know how to get you the affordable insurance/healthcare you need - maybe others have suggestions? You are young enough to remain on your parents insurance plan - perhaps that is an option? - I carried my son until recently (he is 24) - he now has a job with his own health insurance......

[Soulshine]

My parents don't have health insurance as they both work for very small businesses. I had state insurance until I was 18 but I am no longer eligible for medicaid. They told me the only way I would qualify is to become pregnant. I am a junior in university so that wont be happening any time soon lol. I just have to hold myself together long enough to graduate and get a job so I can support myself!

I was diagnosed with lupus "under the table." I had already ran out of insurance when they ran those tests and that particular doctor was very honest and told me I would never get insurance with lupus on my record. At that point my urine tests were clean so I agreed to the no treatment for now option. He did tell me to monitor symptoms because I would probably have a lot of problems with it "later on." I'm afraid that later on is now

I really need to get back in to see him because he seemed genuinely concerned with my well being. I am just afraid that the consult will turn into months of testing and frustration that I just can't afford right now.

Anyway, thank you so much for replying. I'm sure things will work out, because they always do. It is so nice to have a place where I can talk about this stuff and not feel crazy.

[kewi]

What state do you live in? Here in Wisconsin we have an insurance company called "HIRSP". It is by no means free, but its available to high risk patients who would normally be turned down for other insurance due to pre-existing conditions. It's basically a big group plan you can join to keep insurance costs down rather than private insurance, but you have to qualify through certain health circumstances. You should see if your area has something similar. I didn't qualify unfortunately, because you have to have been without insurance for 6 months first ( my parents are keeping me on theirs until graduate) but the people on their phone line were very helpful, you could probably even call them and ask!

As for your symptoms, I'm so new to POTS I dont know, but being a long time nephrology/urology patient I can tell you the testing for bladder retention is very easy and it seems silly your doctor woildnt just order it knowing your symptoms. Im sorry.

But look up "bladder scan" they have one that's a bladder flow study too. I had mine done at Mayo, what they did was have you come in with a full bladder - you go to the bathroom on a special toilet that records your flow the whole time, then once you feel you've emptied your bladder, a nurse scans your abdomen and is able to record the amount of urine remaining. Overall it takes about 5 minutes and in your case sounds like it would absolutely back up your feelings.

[Rachel Cox]

Hi, yes I do! I am in my thirties and I have this problem. I had a urodynamics test done (they catheterise the front and the rectum and then as they fill your bladder, the machine you are hooked up to measures the pressures etc... then you void on a flowmeter pan and they measure again; testing pressures when you cough and strain as well as normal). The urologist said that my detrusor muscle doesn't work properly which is consistent with autonomic dysfunction. I often have to strain for a long time to go, sometimes I can open my urethra to pee but not always. Recently I have been taught how to self-catheterise and it is a huge relief. I am able to empty any residual before bed and again in the morning. This means less UTIs and so it is worth the effort (and initial emotional distress). At first I didn't want to accept it, but ultimately it is one of the things that I actually CAN DO to improve things. I can do it for myself and that is more than for many of the other issues. It's a fix, you just gotta look at it in that light. Self intermittent catheterisation is an easy and inexpensive thing to do. Is there a local nursing service that could teach you how to do it if you doc thinks you should? Sorry, I don't know much about how your medical system works. I am on the other side of the world!

All the best with your bladder, I know how very distressing it can be to struggle with these symptoms every day. Thinking of you.

R