Thursday 10 October 2013

Rachel: A wee problem. Dysautonomia Awareness Month.

Today's guest post comes from Rachel, another New Zealander and all round top chick. When I was packing my dacks about my upcoming pacemaker surgery in July, Rachel was one of the lovely people who reached out to me, to both slap me round and pat my hand to tell me it'd all be okay. She didn't make me feel like a loon for my hysterics and also kept cracking me up with those laughs that can only be shared by those who've been there. Plus her frequent use of the word 'shenanigans' makes me love her even more. Having been known to utter the phrase, "it was a 'Poise-worthy' moment" this post is definitely one that had me nodding along.

Rachel Age 39, married, 2 kids, 1 cat. teacher in a previous life. Became very ill in 2008 after a bad virus, but I had symptoms of Dysautonomia as early as age 8. Diagnosed with POTS, fitted with a rate drop pacemaker, then when other parts of my ANS went wrong the Neurologist changed my diagnosis to Pandysautonomia. cause as yet unknown.
One of the joys of dysautonomia for me, has been the wee problem of pee.
Among other things, the autonomic nervous system is responsible for bladder control.  Sometimes, I retain urine.  Some times I can't keep it in!  I wanted to write about this because it is something people are reluctant to talk about. It makes me cringe thinking that I'm standing on a cyber platform telling you all about my wees.  But since we're sharing...
This first became a problem for me around two years ago.  I went to see my GP for what I thought was (refreshingly) an unrelated-to-dysautonomia issue.  I needed to pee all the time.  The urgency was overwhelming, not to mention irritating.  I would go to the toilet and pee over twenty times a day, sometimes, I didn't make it in time.  It was hard work, as all that getting up and down isn't so easy when you have posturally induced dizziness.  My GP said I had a UTI.  Said it was common to have frequency without the other symptoms and prescribed me antibiotics.  I returned five times and was put on a new course of antibiotics each time.  Each time my urine sample failed to grow any bacteria and the issues didn't go away.
Eventually, I had to tearfully explain to my husband that I was wetting my pants, often.  I felt so ashamed, and so upset that I needed incontinence garments every day, and for bed, in my thirties.  It’s not very sexy.  I thought  that despite my Olympic-standard pelvic floor efforts, I must have been doing something wrong..  We made an appointment to see a urologist.  He ran some tests. 
It seems there is something more embarrassing than peeing your pants.  That's having to pee in front of perfect strangers while they measure your bladder function.  The results showed that my bladder muscle, the detrusor, wasn't receiving the correct messages at the correct time to function normally.   I was put on a medication called solifinacen succinate.  Old fellas go on it when their prostrate stuffs up.  It is a selective medication that helps me to go less often.  I am so thankful for it.  This is the only med I take on an as-needs basis.  That's because my bladder likes to keep me guessing.   
Not long after the festival of golden showers, my bladder went into reverse.  Instead of peeing constantly, I couldn't pee at all.  I ended up in hospital with a catheter and bag.  It became clear that my bladder wasn't just receiving the correct messages at the correct time, but sometimes wasn't receiving them at all.  Once I was home, a district nurse came to teach me how to self catheterise.  The home nursing service pamphlet had a rudimentary diagram of the nether-lands (just quietly, I don't think my hoo-hoo comes from the same place).  Suffice to say, having an iPad and google images in the loo, is a useful medical aide. I am inordinately proud that I can empty my bladder by tube.  It's a massive achievement and gives me the independence I need when retention threatens to send me back to hospital.  Every time, I feel the sort of pride my toddler son felt when he achieved a wee on the big loo.  I can stand and pee, too! But sadly, it's not really the sort of thing you get a sticker chart and a lollipop for.
So.  To pee or not to pee.  That is the question.  The answer, my friends, is to find methods for managing that let you keep the big girl nappies to a minimum and your pride intact.  Here's to my wee pills and my wee tubes.  And my wee bit of courage to tell you all about my wees.



For those unfamiliar, a short explanation of Dysautonomia can be found here.

One of the most famous people with a form of Dysautonomia is former Yellow Wiggle, Greg Page, who lent his name to a research fund at The Baker IDI, here in Melbourne, Australia. Donations can be made at The Greg Page fund For Orthostatic Intolerance.

Information about one of the current research projects under way in Australia at The Baker IDI, can be found here.

Nice choice for a musical accompaniment by Rachel.


  1. Oh my goodness Rachel, you are a superstar! I have enough trouble putting a catheter into a patient, doing it to myself just seems nigh on impossible. Thanks for sharing so openly.

  2. Oh my goodness Rachel, you are a superstar! I have enough trouble putting a catheter into a patient, doing it to myself just seems nigh on impossible. Thanks for sharing so openly.

  3. Oh my goodness Rachel, you are a superstar! I have enough trouble putting a catheter into a patient, doing it to myself just seems nigh on impossible. Thanks for sharing so openly.

  4. Thank you for sharing! Hearing other people experiences with even our most embarrassing problems is so important. It makes me feel not quite so alone. My "wee" problem just started a few weeks ago. No way near as bad as yours, just slightly annoying at this point. Can not empty my bladder completely if I wait to go until it is full and out of no where I will wee, just a bit, for no reason what so ever. First time it happened I was sitting at the computer typing, I stood up so fast my daughter thought I had gotten stung by a bee. Nope, stung by the wee I guess. lol I still havent told my husband about it yet. Hoping it doesnt get any worse, but if it does, after reading your story I am now prepared. Thank you again.

    <3 DiNae

  5. Thank you, sooo much, for sharing. My family supports me BUT...and I know I can be frustrating to them. One day I'm ok, can go and do almost anything...the next,I dare not stray far from home! And we even have joked about my various accidents. But it is frustrating to me as well...and its SUPER when I can point out others that have similar problems that make someone elses life..interresting...

  6. Thanks for all the info on this blod, we're looking into this for my 3 year old daughter. At 2 she was diagnosed with transient erythromblastopenia of the childhood--she stopped producing blood. We were told it was caused by a virus entering the bone marrow and stopping production, but after 50+ tests, they couldn't find any virus she contracted. After 2 blood transfusions and months with the hemotologist, she finall started reproducing blood again.

    Then weeks after that, she was diagnosed with epilepsy. Then a few months after that we started noticing constant UTIs. After antibiotics and still getting UTIs, we were sent to a urologist, who after the "fun filled VCUG" diagnosed her with kidney reflux.

    A few weeks after that and not being able to get her to go more than 3 times a days (sometimes she would only go once or not at all within a 24 hour period), we got sent to another doctor (team).

    After the fun urodynamics test, that the above poster went through too, we found that her bladder does not receive instructions to contract, thus she CANT pee until her bladder is completely full at 360ccs (over 2x larger than normal) and spasms instead of contracts. She was diagnosed with neurogenic bladder disorder as a result and now gets cathed 3 times a day. Talk about fun...cathing a 3 year old on a daily basis is just not right.

    Now we are also finding out she has neurogenic bowel disorder for the same reason and she CANT poop until her colon is impacted.

    Someone recommended we check into a nervous system disorder, which we'll be talking to her neurologist about soon. We have an MRI coming up soon for both her neurologist and urologist, but I hope we find answers soon because its been 18 months of hell and I just feel like we're missing the big picture and just seeing the pieces.

  7. Hi Jill, I am the poster... have they looked into PAF for your daughter? -Rachel

  8. Thanks for sharing Rachel xx :)

  9. Rachel, what is PAF? So far all we've got is an MRI scheduled soon. She was just diagnosed with neurogenic bladder and bowel disorder and so it wasn't until recently that the thought came across that maybe this is all related somehow.

    She does have times where she sleeps a whole lot and days or times where all she wants to do is lay on the couch. She recently showed signs of being unable to regulate her body temperature and constantly getting too hot, which is dangerous for an epileptic.

  10. Jill's Mom,

    I have similar issues as what you described in your daughter: neurogenic bladder and severe bowel dysmotility. Are you aware of the interstim sacral neuro modulator? It is implanted in the back and helps regulate the bladder and bowel. I had one implanted two years ago. It is tremendously helpful for the bladder issues. Not as much for the bowel for me but the potential is there for many people. Best wishes-

    1. I've been dealing with dysautonomia since 2012 (altough doctors suspect I had it since childhood) and one of my main issues is my bladder. I've had up to 17 UTI's in a year, with most of them being resistant to most antibiotics, so I ended up on the hospital a bunsh of times. I was diagnosed with neurogenic bladder and Fowler's Syndrome and are currently on intermittent cathertization, but my urologist (who is a neuro-urologist) suggested the interstim sacral neuro modulator as well. It helps with both, bladder retention and incontinence.
      I have managed to control my UTI's, so I haven't dared to get it implanted, but from what I researched it is supposed to be a wonder!! So you should definitely look into that!!

  11. No, I hadn't, but I'll look into that. Does it help with bladder retention or just bladder incontinence?

    Her neurogenic bladder is retention. Without intermittent cathertization she may go once, maybe twice, a day. She has gone over 30 hours before.

    But thank you very much! I'll be looking that up :)

  12. Hi Jill's Mom. I'm the poster. I am not a doctor, but I know that early childhood dysautonomias are quite rare. I have only heard of very young ones with Pure Autonomic Failure, which is a genetic and very serious form dysautonomia found in people of Ashkenazi descent, it is found earlier in life, often from birth. This may well not be a relevant thing for your daughter. I thought I would ask in case you hadn't heard of it. I sincerely hope your daughter has some answers and some better treatments soon. Best wishes. -Rachel


All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

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