(Closed) Help Healthcare Bees – ongoing condition, doctors given up, getting desperate

posted 5 years ago in Wellness
Post # 2
14494 posts
Honey Beekeeper
  • Wedding: June 2011

Oh dear sweety, I’m so sorry your dealing with this.  Have you seen an actual urologist or just nurses? If it were me, I’d be headed for mayo clinic in Arizona. 

Post # 4
1282 posts
Bumble bee
  • Wedding: November 2012

bambinoblue:  I’m no expert in this area, sorry you are going through this. Is there another urologist you can see for a second opinion?

It struck me when you said you had about 100 mL of urine left . . . that seemed like a lot, so I looked it up: http://www.merckmanuals.com/professional/genitourinary_disorders/voiding_disorders/urinary_retention.html?qt=urinary%20retention&alt=sh

“A volume < 50 mL is normal; < 100 mL is usually acceptable in patients > 65 but abnormal in younger patients.”

Since you are young, apparently 100 mL is a lot of urine that is sitting there just waiting to potentially leak out. Is there any way you can get a hard copy of your urodynamics report to see exactly what it says? 

Post # 5
8670 posts
Bumble Beekeeper

bambinoblue:  I would think that it is psychological or stress related incontinence. Even when you are not in a stressful situation your mind can still be under stress.

Have you been tested for STI’s? Because some when untreated can cause incontinence as well but as I said it is probably psychological. I would find a good psychologist that works with this type of issue.

Post # 7
8670 posts
Bumble Beekeeper

bambinoblue:  The mind is a tricky thing. It does it’s best to try and fool us all the time. Even though you feel happier etc does not mean that the trigger/cause has gone away. It just means that you brain has successfully blocked your thinking about it but your subconscious is still bubbling away with it. Our brain works very hard to try and protect us.

Post # 9
1150 posts
Bumble bee
  • Wedding: June 2014

tksjewelry:  (I don’t mean this in a snarky way) but the Mayo Clinic is in Minnesota!

bambinoblue: The part of your history that made me stop and think is exploratory laparotomy, and the 100mL retention. I wonder if this is a neurological issue, potentially related to the surgery. Just like everywhere else in our bodies, there are nerves that are involved with the voluntary and involuntary functions of our bladder.  I’m not a doctor, but I spent several years in medical research with spine patients, some of whom have urinary incontinence issues due to their back problems. Since you seem to have had a quite thorough workup from the urological perspective, maybe this is an avenue worth exploring. Perhaps you can ask your GP for a neurologist referral. 

ETA: sorry, I just looked it up and apparently Mayo has a satellite location in Arizona. My bad!

Post # 11
164 posts
Blushing bee
  • Wedding: November 2014

I don’t have any good advice, I just wanted to say I’m so sorry you’re dealing with this.  I have a weird eye condition and it took me 6 months for a doctor to believe I was actually in pain (most told me it was psychological when they couldn’t figure it out), and then another year to be diagnosed.  I can’t stress enough how much you need to be your own advocate.  I hope you find out what’s going on soon!

Post # 13
7977 posts
Bumble Beekeeper
  • Wedding: July 2013 - UK

I wish I could be more helpful, but my only suggestion is this:

Years ago I fractured several vertebrae in an accident. I didn’t realise that they were fractured initially… I just thought I had damaged the muscles. Anyway, about 6 months later I woke up paralysed down my left hand side. It turns out that the scar tissue from the injury was compressing my spinal cord whilst I slept, causing temporary paralysis.

I wonder… could you have scarring from a previous injury pressing on a nerve somewhere?

Post # 14
2713 posts
Sugar bee
  • Wedding: September 2014

vermonster:  the primary campus for the Mayo clinic is in Minnesota, but they also have a location in Phoenix/Scottsdale. 

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