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 her birth.
After approximately 64 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:
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
I had all of those except for the c-section.
ObsGynae&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 weeks later.
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 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 regular 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).
Difficult experiences in life often challenge us to reflect on and examine our lives more deeply than we otherwise would. Yes, there is grief, and anger, and regret, and frustration. But there is also courage, and hope, and compassion, and purpose. If you are struggling with purpose, and an emptiness inside, then it might be possible that God is challenging you right now, through this struggle, about your life’s calling. Perhaps all the struggles I have faced simply had their purpose in leading YOU here – to my story. Perhaps God allowed all these things to happen in my life so that YOU might be offered this chance to know Him. If so, one heart won, and one soul saved for eternity is worth all the sacrifice, pain, and challenge. YOU are worth it.
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.
“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)