Overflow Incontinence, Neurogenic Bladder, and PostPartum Woes

I can relate to E’s decreased bladder sensation and tone, and can understand how it can be difficult for her to tell when she needs to urinate.  My understanding comes not from a stroke, but from mismanagement in my post-partum care.

After approximately 63 hours of labor and 2 hours of pushing, E was delivered via vacuum extraction.  I had an epidural for the last 8 hours of labor, and was unable to urinate at that time so they had done “in-and-out” catheterization.  After E was born I had a significant amount of perineal swelling, and was unable to void after her delivery even though it had been about 3-4 hours since they had last emptied my bladder.  I had no urinary sensation whatsoever.  The nurses did not seem concerned in any way, so we just carried on with getting up to our room and figuring out the newborn thing.  I was still hooked up to IV fluids and pitocin due to some uterine bleeding I was having.  At this time I was also having horrible pelvic pain, which I attributed to the pitocin or uterine cramping.  It was so bad that I asked for narcotic pain meds.  I thought this was normal following delivery; it was similar to transitional contractions.  (After having a second child, I know this is NOT normal.  Uterine pain is basically gone after birth.  It was my bladder overdistending and dying causing the pain – which was misdiagnosed.  An attending resident saw me and gave me narcotics without pausing to figure out why I was having pain.)

About 6 hours later, when I stood up, I had a flood of what I thought was blood.  I rang the nurse and she got housekeeping to clean it up, and she didn’t seem concerned at all, so I thought that much bleeding must be normal.

The next morning when I got up, I again had a flood of what I thought was blood.  The nurse said, “Oh, it looks like there’s some urine as well”.  Again, she didn’t seem concerned, and I was super embarrassed since I had no idea I had to pee at all.

I continued to flood urine whenever I stood up, so I tried to stay in bed as much as possible.  It was about 36 hours before it occurred to me that I hadn’t peed since delivery willingly (on the toilet), and I asked the nurse if that was normal.  She told me that having incontinence was normal after delivery.  I was horrified that no one had warned me that every time I stood up I would completely wet myself, and have no urge to pee at all.  (Of course, this is entirely ABnormal.  A SMALL amount of dribbling, when sneezing or laughing, or having difficulty making it to the toilet on time is normal.  Flooding is ABNORMAL and indicative of urinary dysfunction).  I had no idea if this was going to continue my whole life long, and along with the influence of post-partum hormone and a severe lack of sleep, had suicidal ideations.

Meanwhile, the nurses were roughly manhandling me trying to teach me nursing (after breastfeeding for a total of 5 years, I now know that they were not giving me accurate or complete information), and poor E (post-stroke, but undiagnosed) gave up on the whole thing.  It had been 36 hours and she hadn’t eaten/drank at all and wailed any time we attempted to nurse.

The doctor eventually ordered the nurses to catheterize me to see what was remaining in my bladder after I attempted to pee (when I did, nothing would come out – no sensation at all).  Two nurses tried, and called in a third, but the swelling was so profound they couldn’t get the catheter in.  They abandoned trying until the next day.

The next morning (approx 64 hours after delivery) my doctor came in, irritated, and used some freezing and Ativan and catheterized me right after I had had a “flood” episode.  She drained 2.5 LITRES of urine out of my bladder. Normal bladder capacity is somewhere around 500-700 mL max, and 800-900 is considered overdistension.  My bladder was well over 3x that after it had already overflowed.

Wikipedia defines Overflow Incontinence as:

Overflow incontinence is a form of urinary incontinence, characterized by the involuntary release of urine from an overfull urinary bladder, often in the absence of any urge to urinate.

Source

Risk factors for post-partum urinary difficulties include:

  • Nulliparous women (first babies)
  • Prolonged labour, especially a prolonged second stage
  • Assisted/instrumental delivery
  • Perineal injury
  • Caesarean section
  • Regional analgesia

bladder overdistensionObsGynae&Midwifery News has an excellent summary article about post-partum urinary dysfunction.  In it, they estimate:

It would be reasonable to quote that 10-15% of women have voiding dysfunction to some degree and for some time following delivery.  Up to 5% of these women may have significant and longer lasting dysfunction, which if not recognised in the early peripartum period, may lead to bladder distension and overflow incontinence with significant long-term bladder dysfunction.

Symptoms of acute retention are obvious as women are not able to void and suffer an associated painful bladder.

However, the pain should not be misdiagnosed as caesarean wound (or other abdominal) pain.

Symptoms of incomplete emptying/ chronic retention of the bladder in post partum period include:

  • Difficulty in initiating a void after birth
  • The feeling of bladder fullness after voiding
  • Dribbling of urine post micturition
  • Frequency with small void volumes
  • Poor flow rate with straining to void
  • Nocturia >2 times which is not related to baby feeding

It needs to be emphasised that symptoms may be masked or a patient may be asymptomatic, especially if they have had an epidural. In some cases they may have overflow incontinence due to bladder over distension, displaying symptoms of stress incontinence.

I remained in hospital for another couple days with an indwelling catheter.  I had to keep the indwelling catheter in place for several weeks, due to my perineal swelling.  Unfortunately, I had some tears that the catheter rubbed right in, and these did not start to heal until the catheter was removed.

I felt like I was being treated like a nuisance the entire time, and no one could give me answers.  The truth was, they had no idea if my bladder would ever improve, no one wanted to tell me so directly, and no one wanted to admit fault.  It was a series of negligent actions that led to my condition – the “swiss cheese effect”.

Once the indwelling catheter was removed, I still had no bladder sensation and was not able to void.  I had to catheterize myself to pee every 4-6 hours for 7 months.  Catheterization, even when done “cleanly”, carries risk of infection, and I had a kidney infection at one point.  It may have started out as a bladder infection, but because I had no sensation in my bladder region, I didn’t notice until I got horrible flank pain and a raging fever.

I was referred to a urologist, who again had no idea if I would recover bladder function or not.  I remained very emotional and borderline suicidal, having dreams of killing myself and my baby.  I was referred to a psychiatrist, and saw her several times but was being watched by a “team in training” behind mirrored glass, and was very uncomfortable with the whole situation so I just lied about the extent of my emotional state.  I went on anti-depressants, but these decreased my milk supply so I went off them, as breastfeeding was critically important to me.

I did eventually regain some bladder sensation, a little bit at a time, around the 5 month mark.  Around 5-6 months, I could dribble a little bit of pee.  At 7 months I could somewhat empty my bladder and did have a residual of around 50mL which the urologist said was just fine and I could stop catheterizing.  7 years later, I still have limited bladder and urinary sensation, but can function almost normally.  I do have some occasional episodes of minor incontinence.

For anyone reading this, I can only suppose it is because you are having post-partum bladder issues.  One day at a time, my friend, one day at a time.  Out of the deepest, darkest tunnels, eventually glimmers of light can be seen.  I have records of my catheterizations and how my function improved over time that I am willing to share if you comment with an email address below.  Please indicate if you want your comment to remain unpublished.

For more information you can google:

  • Detrusor dysfuntion
  • Neurogenic bladder
  • Overflow incontinence post-partum
  • Detrusor stimulation (if I didn’t get bladder function back, I looked into bladder transplants – which aren’t successful, as well as bladder muscle stimulation – which is what they were doing in Germany at the time and showed promise).

I strongly believe that in this life, nothing happens by accident or coincidence – things aren’t determined by fate or luck (good or bad).  I believe there is an overarching story – a beautiful picture of love, loss, and redemption – and that there is Someone who cares and is in control.  You are already a part of this story, whether you know or believe it or not.  While the end of the story has already been written, your own part lays open before you for you to choose your ultimate destiny.  Perhaps our coinciding struggles have been finely orchestrated to lead you to this one moment: The Bridge to God.

download

“Praise be to the God and Father of our Lord Jesus Christ. The Father of compassion, the God of all comfort, who comforts us in all our troubles so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow into our lives, so also should the comfort of Christ overflow.” (2 Corinthians 1:3-5)

ECC – Early Childhood Caries

One of the other medical issues we have dealt with – which came seemingly out of the blue – is ECC, or Early Childhood Caries (cavities).

When N was 2, I had noticed some orange-ish brown spots on several of his teeth and took him to the dentist.  The dentist had a look and felt that they were stains from his iron drops (which can turn the teeth temporarily greyish black and spotty if on plaque).  Here’s a great chart I found showing the appearance of various stages of tooth decay:

cavities

The next year, the spots were still there, and there was a part on the back of one of his top front teeth that felt jagged and had an orangey brown spot as well.  I knew it didn’t look good, and so we went back to the dentist.  She thought it was a “superficial cavity”, and that he had 3 of them (the front tooth, as well as two back molars).  She told me she could just buff them out with the polisher, no freezing, so I told her to go ahead.  N was brave, confident, and did just fine.  At first.  Until she got out the drill, and without freezing, proceeded to drill and fill the first cavity.  While N was screaming and screaming and they were holding him down.

I was horribly traumatized.  N was horribly traumatized.  E, who was also there, was traumatized.

We didn’t fill the other 2 that day.  We went home, talked about it, played dentist, and talked about how she did the wrong thing.  She should have stopped.  She should have used freezing.  She didn’t listen to him, and that was wrong.  (It is important to affirm the child’s experience and feelings, for resilience)

We went to a different dentist for a consultation.  He also felt that N had 2 small cavities remaining in his molars, but that we could watch and wait for a few months to give him time to settle down about dentists.  In the meantime, we researched remineralization for teeth and discovered an awful lot about dental decay that your dentist won’t tell you:

  • Dental decay and gum disease are basically infections – they are caused by an overgrowth of pathogenic bacteria (Streptococcus mutans, or S. mutans).  Your mouth has a normal flora which can keep S. mutans in check, but you can “catch” S. mutans by sharing utensils, straws, cups etc with someone who has an overgrowth of it.
  • Dental decay and gum disease can be prevented by selectively killing off S. mutans and allowing other normal flora to repopulate your mouth
  • S. mutans is killed with hydrogen peroxide, baking soda, alcohol (think mouthwashes), and alcohol sugars (xylitol and erythritol).  The best choice to use in children is alcohol sugars (as ingesting hydrogen peroxide, baking soda, or alcohol is not a good idea!)  Bonus: xylitol and erythritol are lower calorie than regular sugar, have a lower glycemic index, as well as selectively inhibiting S. mutans (that bacteria can’t feed on it like regular sugar).  At higher doses they can increase bowel motility (a good side effect for kids who struggle with constipation).  Aim for xylitol or erythritol to bathe your teeth and mouth 5+ times per day (Strive for Five).  It is available in candies, gum, and toothpastes, but the cheapest way is to buy a bag of the sugar and either eat the sugar or dissolve it in water and rinse with it.
  • Plaque is a biofilm of bacteria and their waste products.  It takes about 8 hours for the biofilm to form and the acid to start etching your teeth (the earliest start of a cavity).  Hence, if you brush your teeth more frequently than every 8 hours, you disrupt this biofilm process.
  • Remineralization can be promoted with fluoride (pastes, polishes), but fluoride can cause upset stomach or spots on teeth if too much is ingested.  A better option is called MI paste, which contains bioavailable calcium and phosphorus.  MI Paste Plus also contains fluoride and is great for adults.  MI paste can be found at many dentist offices, without a prescription.  It is about $20 per tube (CDN).   To use, apply a pea-sized amount to the border between the gums and teeth, and smear right on any orange-brown spots right before sleeping (you want it to sit there as long as possible).  I did it after my son had fallen asleep, and just rubbed along his gumlines.  Apply nightly for at least 4-6 weeks.

MI_Paste_Image-258x258

  • We have also found a great mouthwash which includes both xylitol and fluoride, if your child knows how to spit it out – X-Pur Opti-Rinse.  It comes in 0.2% fluoride (mint) and 0.05% fluoride (berry) flavors.
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  • Early stage cavities, in the enamel layer, can be healed in this way (remineralization pastes, fluoride pastes, xylitol or erythritol 5x a day – “Strive for Five”).  It is more difficult to heal cavities in the grooves of molars, as bacteria can hide out there easier.
  • Here’s a link to some great preventative mouth care:  Dr. Ellie’s Mouth Care System

We went back in about 5 months, and the dentist said we should try to fill the spots (this time on his back molars).  Unfortunately, the spots on his molars were past the enamel layer into the dentin.  However, the orangey spots that had been on several other teeth had disappeared or turned dark brown/black and shiny (inactive/healed).

We booked an appointment with sedation (Versed (midazolam) drink).  The sedation went OK, but he never did get sleepy.  The dentist started to drill, and N started getting anxious as he recalled the last drilling fiasco.  I asked for the nitrous oxide.  The hygienist fiddled around with the machine for 45 minutes before admitting that the machine hadn’t been tested and was malfunctioning.

Meanwhile, the dentist was behind schedule, and started getting mad at N.  He quickly placed a filling in the hole he had drilled, and N was very upset.

It took about 6 hours for the Versed to wear off, and N was a crazy person.  Peed his pants (it makes your muscles relax), freaked out, wouldn’t sleep, and basically acted like he was way overdosed on caffeine.  He yelled, raged, threw himself on the floor, flopped around.  Luckily, I don’t think he remembered it, as that is one of Versed’s side effects.  I didn’t get any Versed, so I remember the whole thing!!!

N still had one filling to go, and his new filling didn’t look like it was done very well (I could see dark spots beside and through it), so we ended up going to a third dentist.  This dentist specializes in “sleep” dentistry.  We had a 5-minute consultation, in which he grandiosely suggested that N had a mouthful of cavities.  N had general anesthesia dentistry and got a thorough cleaning, fluoride treatment and SEVEN fillings.  Silver amalgam ones, as they apparently are more durable, and we didn’t want to go through this again (even though I am on the fence about silver amalgam and replaced my own with porcelain).

In several months I am taking him to a fourth dentist, whom I will get to review the x-rays to see if he agrees that there were actually 7 cavities.  I am a little suspicious that the drill and fill dentist was a little overzealous with fillings, but – we really had no other choice at that point.

UPDATE 1:  Fourth dentist reviewed N’s x-rays and showed me there were one, possibly two, cavities between his molars.  He also needed two surface molar fillings.  So in total, he needed 3-4 fillings, not 7.  It’s so frustrating to get sub-optimal treatment and to be so helpless in your own child’s care, even when you’re trying to be an advocate. I’m glad that N was asleep for the fillings, and I am *super* glad that they are his baby teeth, but it does make me wary of dentists.

Case in point, this fourth dentist was going to give ME 7 fillings (replacing some of my old ones, claiming they were leaking).  I didn’t feel comfortable for some reason and went for a second opinion (Fifth dentist).  The Fifth dentist took bitewings and informed me that NO fillings were necessary – that they would just be cosmetic to remove staining from food, coffee, tea.  He explained that intact teeth are always stronger than any filling material and it is best to leave them intact as much as possible.  I am wondering how many of MY many fillings were in fact, actually necessary!  This is something to advocate for your children and for yourselves going ahead!  Get second opinions, try the xylitol and MI paste, and watch and wait if it’s not obvious!

UPDATE 2:  N’s front teeth with the front orange pre-cavity discoloration have mostly remineralized following the above protocol off and on for a year and a half now.  No further cavities.

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I strongly believe that in this life, nothing happens by accident or coincidence – things aren’t determined by fate or luck (good or bad).  I believe there is an overarching story – a beautiful picture of love, loss, and redemption – and that there is Someone who cares and is in control.  You are already a part of this story, whether you know or believe it or not.  While the end of the story has already been written, your own part lays open before you for you to choose your ultimate destiny.  Perhaps our coinciding struggles have been finely orchestrated to lead you to this one moment: The Bridge to God.

download

“Praise be to the God and Father of our Lord Jesus Christ. The Father of compassion, the God of all comfort, who comforts us in all our troubles so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow into our lives, so also should the comfort of Christ overflow.” (2 Corinthians 1:3-5)