My Story of Pelvic Floor Dysfunction: from Childhood to Diagnosis to Treatment
When it first happened, I felt like a victim — powerless to do anything. But once I learned I had pelvic floor dysfunction, that it was a cumulation of all of my life’s events, from childhood to child birth and more, and that I had hope through pelvic floor physical therapy — I no longer felt powerless. Here’s my story of pelvic floor dysfunction.
When it first happened, I felt like a victim. Like something had happened TO me — and I had zero control over it.
Now that I’m several months into living with pelvic floor dysfunction, I know better.
I know that nothing I ate or didn’t eat would’ve caused or prevented my PFD. No supplement could’ve prevented it. No medication or antibiotic I ever took caused it.
I also know that, while this did happen TO me, I am not a powerless victim.
Yes, pelvic floor dysfunction is scary. In fact, it’s scary as hell.
It’s also painful — physically, mentally, and emotionally. PFD is big part of the cause of a mental health break I experienced in early 2019.
PFD is also a drag. Some days, it seriously impacts my work life, home life, social life, sex life, and most of all my mental and emotional health.
My PFD wasn’t caused by one event or trauma. And if you have pelvic floor dysfunction, yours likely didn’t happen overnight either.
Rather, it came about slowly — a lifetime of depleting what my pelvic floor physical therapist refers to as the “pelvic reserve”.
My name is Lindsey. And I
have had pelvic floor dysfunction.
I would like to share my story with you.
My pelvic floor dysfunction began with an overstimulated nervous system in infancy.
My parents have never ceased to tell me what a child prodigy I was. (LOL)
According to my mom, I walked before I turned one year old, I potty-trained myself by 15 months, I won a child beauty pageant at 18 months, and I was reading by age 2.
Yet, though I had doting parents who planned my arrival with as much detail as a kitchen remodel, parents who were in love with me from the moment the pregnancy test showed ‘positive’, those parents quickly fell out of love with each other.
They were divorced before my second birthday.
I have no memory of living with both of my biological parents at the same time. Although, I have two albums full of photos that prove there were happy moments in my infancy and toddlerhood. Without those photos, I wouldn’t have any proof of myself as a baby or toddler.
While it’s kind of weird that our conscious minds and memories don’t turn on until around age 7, it’s also kind of a blessing.
I have no memory of my parents fighting — which likely happened a lot.
Furthermore, I have no memories of falling as I learned to walk or of being left on the side of the road while one of my parents drove off without me. (I won’t say which one because it doesn’t matter. My relationship with both of my parents is awesome, and they have important, irreplaceable spots in my life.)
The point is, I was an infant and toddler with parents who loved and adored me, but who didn’t love or adore each other.
Therefore, I spent the first couple of years of my life in an unstable environment — one with fighting and yelling, talk of affairs and separation and ultimately, divorce.
I have no way of knowing what impact those events had on me or my pelvic floor, but I do know this: I began my life in a stressful environment.
From infancy, my fight or flight response was activated, turning on my sympathetic nervous system. My adrenals were taxed from a young age
Let’s talk about the nervous system for a moment.
All of us have an autonomic nervous system (ANS) — the part of our nervous systems that acts unconsciously and regulates digestion, breathing, heart rate, sexual arousal, and urination.
It’s primary mechanism is control of the “fight or flight response”. That is, when we are confronted with anything the brain determines as a danger, our fight or flight response is activated — which is a surge of hormonal and nervous system actions that happen in milliseconds so we can fight against the danger or run away from it.
The ANS is made up of 2 parts: the sympathetic nervous system and the parasympathetic nervous system.
The sympathetic nervous system is our fight our flight response. We’re said to be “sympathetic dominant” when we are living under constant stress.
Our bodies and brains do not know the difference between a potential attack by a bear and the stress of bills we can’t pay or harried lifestyles that provide us no down time.
In all the evolving we’ve done as humans, our nervous systems have not yet evolved to distinguish between the bear and the bills.
When our sympathetic nervous system is in the driver’s seat, our bodies are overworked and under-nourished, our breathing is shallow, pupils dilate, and we feel sweaty or heart palpitations or sick to our stomachs.
On the other hand, when our parasympathetic nervous system is in charge, we’re in “rest and digest” or “feed and breed” mode. Everything is calm. We inhale to nourish our cells and exhale to release toxins. Our digestive systems work optimally, and we experience sound sleep, good sex, and enjoyment of life.
Guess which part of the nervous system is in charge of pelvic floor health? (Hint: parasympathetic.)
Unfortunately, as an infant and toddler living in a stressful environment, my sympathetic nervous system was activated from the beginning of my life.
As you continue to read, you’ll see that it remained activated — with my entire life spent in sympathetic nervous system dominance — until I was diagnosed with PFD at age 35.
Fight or Flight During Formative Years
After 5 years of single parenting, my mom remarried. She married a red-headed narcissist who had been sober from alcohol for 3 whole months. I was 7.
Immediately, my mom and I combined our family with my stepdad and his son. Shortly after their wedding, our new combined family relocated to a new town and new school and new people.
I wonder how much stress I was feeling during all this moving and newness? I have no memory of being sat down and talked through what was going on. Nor do I remember ever being asked how I felt about all this change.
I’m not sure I would’ve had the vocabulary to verbalize my feelings if I had.
Yet, now I know that this stress, these changes, the acclimating to a new family, a new school, a new stepdad without proper coping skills caused my fight or flight response to stay activated.
And, I haven’t even gotten into the normal things I did as a kid that hurt my pelvic floor! These are all emotional and psychological.
I fell off the merry-go-round at recess when I was 8 years old and cracked my tailbone.
This is the first fall of my life that I remember. It’s also likely the first major injury in a long line of later injuries to my pelvic floor.
How many times did I fall off my bike when I learned to ride without training wheels?
As a baton twirler, I spent countless hours learning (and slipping and falling) gymnastics and ballet. Baton-twirling was a huge part of my childhood and teenage years. There’s no telling how many hours I spent practicing at the gym, doing routines over and over, even falling asleep by playing a movie of myself doing my routines in my head.
Yet, twirling also severely impacted my nervous system and adrenals. I was a competitive twirler, traveling the country to compete in meets.
My stomach was in knots during competitions, and I would be so nervous to perform my routines for the judges and my parents, coach, and competitors’ parents in the audience.
I had a rollerskating party for my 9th birthday… how many times did I fall and land on my butt or hips?
I was one of those lucky kids who lived in the country, and we had horses. Naturally, horseback-riding was part of my life — which has a huge impact on the health of the pelvic floor.
I climbed over a slick, wire-panel fence at age 10 wearing a pair of loafers. I slipped, and the wire panel went right between my legs, severely bruising my inner labia and perineum. My genitals were swollen and bruised for days.
How many falls I had as a normal kid: falling off my bike, falling off a horse, falling on slick ice, falling while roller-blading.
Finally, corporal punishment was one of my stepfather’s favorite pastimes. I was a small, but smart aleck-y kid, and he sinisterly enjoyed the application of his leather belt to my back side. The force with which he hit me was definitely enough to cause some damage to my pelvic floor — but how would I have known that then?
Pelvic Floor Dysfunction is more than just physical trauma.
My fundamentalist Christian upbringing — with sex and sexuality shrouded in sinful mystery — also produced both physical and psychological reactions in my body.
As a teenager, I grew up in the “Purity Culture” of the American South’s Bible Belt — a culture where a girl’s virginity was prized above all else, where fathers bought their daughters purity rings to be worn as a promise of their virginity, and where pledges were signed to abstain from all sexual thought and acts until marriage.
How was that damaging to my pelvic floor?
Well, you wanna talk about making a girl uptight? Bring shame, forbiddance, and her prized virginity into her awareness and it’s amazing how tightly those pelvic floor muscles will contract.
Each time the preacher or the youth pastor spoke on lust or had us sign “True Love Waits” cards, I could actually feel my vagina tighten up a little more.
Literally, I became an anxious, uptight human being — uncomfortably curious but uneducated about sex, clueless about my own sexuality, and deathly afraid of being caught in any sexual “sin”.
And, Pelvic Floor Trauma as an Adult
When I married at age 19, my fiancé (now husband) and I were allowed to read one Christian book about sex and sexuality in marriage. Of course, we read it separately.
On our wedding night, the contents of that book were pretty much all we knew — and you better believe I was super nervous and uptight.
Thankfully, intercourse with my husband never hurt. It took us a few tries to figure it out, but it was never painful or traumatizing. (I’m still working through some issues with my sexuality that were repressed for most of my life due to my religious upbringing.)
It didn’t take us long to get pregnant with our first child, who was born 3 months before my 21st birthday. I experienced a 3rd-degree tear during my son’s birth (hello, trauma to the pelvic floor).
Just 8 months later, I was pregnant with baby #2. Rather than tearing, my OB performed an episiotomy.
FYI: whether you tear or have an episiotomy or not, pregnancy and childbirth are both traumatic events for the pelvic floor.
Now I know what I did not know and what no one explained to me then: My body, including my pelvic floor, had not had enough time to heal after baby #1 before it underwent the trauma of baby #2.
Over the course of my adulthood, I’ve been in 2 major car accidents. Doctors are most concerned about head and spine injuries with wrecks, but did you know that they impact the pelvic floor, too?
Just a couple of years ago, I was sitting on one of the metal bar stools in our kitchen with my left leg under me. My leg fell asleep, and when I got up from the stool to stand, the numb leg collapsed under me, causing me to fall to the floor. I landed right on my sacrum and couldn’t move for 2 days.
The Reserve of My Pelvic Floor
My pelvic floor physical therapist explains how PFD occurs with the word “reserve” — as in, a supply of a commodity not needed for immediate use, but available if required.
Little by little, over the course of my life, my pelvic floor was being depleted of its reserves.
With every fall, every injury, every religious no-no, every strike of my stepfather’s belt, every birth, my pelvic floor muscles contracted a little tighter or loosened a little more. My pelvis and sacrum and lower back became a little more off-kilter with each injury and fall.
The bio-chemistry of my body — hormones changing with menses, pregnancy, breast-feeding, and then in my mid-30s — also affected my pelvic floor.
When My Reserves Finally Depleted
2018 was, to date, the most stressful year of my life. Everything that could’ve gone wrong did go wrong.
We had a chimney fire, my husband’s grandmother died, water leaked into our basement twice, and at one point, all 3 of our cars had something wrong with them.
All of this life stress took a toll on my marriage. So in addition to dealing with all of the outside stressors, I was also doing my best to deal with a marriage on the rocks while also dealing with my diagnosed mental illnesses, generalized anxiety disorder and PTSD.
During the summer of 2018, I had some seasonal allergies and noticed that, when I sneezed, a bit of urine would leak out. It wasn’t every sneeze at first.
But over the course of the summer, the leaking became so constant with my sneezing that I would actually cross my legs while standing when I felt a sneeze coming on to prevent leaking urine.
I laughed to my husband that I must be getting old and that having babies had finally caught up to me. (Actually, this was the first clue my body was giving me that my pelvic floor reserves were getting dangerously low.)
Once the summer was over and all the broken things were fixed, my husband and I found the deep love we had for one another again. It took time and some individual and couples therapy, but we made the conscious decision that we were still in it to win it, for better or for worse.
And boy howdy, had that “worse” part tested us!
Fall came — which in Northern Minnesota is literally one of the most beautiful seasons a person can experience. We had a lovely fall. We were happy, our home had laughter and joy again.
And then, in late October 2018, I got a UTI.
The UTI That Never Seemed To End + A Sledding Accident
It was important to me to treat this UTI without antibiotics. I’ve had UTIs in the past that I wasn’t able to treat naturally, and my body suffered great consequences from the antibiotics I took.
Yet, though the infection was gone, my urethra continued to spasm.
It was worse if I was up and active, so I confined myself to bed, believing that my body just needed rest.
Then, on Christmas Day 2018, I had a really bad sledding accident which severely jammed my ankle, twisted my foot, and deeply bruised my shin and calf.
Turns out, that sledding accident is likely the proverbial straw that broke the camel’s back — or, the final thing that depleted the low reserves of my pelvic floor.
Despite having 3 urine analysis come back negative for bacteria, my urethra continued to twinge for nearly 4 months before I finally got some answers.
And it wasn’t anything I expected…
How PFD Was Diagnosed
By the time I walked into the urologist’s office in February 2019, I was convinced I had something major wrong with my bladder and/or urethra.
My initial thought was interstitial cystitis. Then bladder or urethra cancer.
I went to my appointment, prepared with a notebook full of studies, research, various supplements I had tried, and a timeline of the 4 months of spasms — what made them worse, what made them better, etc.
Though the urologist was a bit dry and seemed unconcerned, he took the time to listen as I started from that UTI in October and explained every, single symptom, ache, pain, and twinge my body had experienced from then until February.
Once I finished talking, he proudly but quietly stated, “You don’t have interstitial cystitis. You have pelvic floor dysfunction.”
Thank goodness I had brought a friend with me to the appointment, because I could hardly pick my jaw up off the floor.
Just to be certain, I asked him for a physical examination.
His nurse wheeled in a sonogram-type cart and looked at my bladder. Despite the fact that I had urinated twice in 30 minutes, I still had 112mL of urine in my bladder.
Next, he performed a sort of pelvic exam — internally pushing on my bladder, then urethra, then rectum, asking each time if it hurt at all. It didn’t.
Finally, he pressed his fingers on the side of my pelvic wall, the right side of my vagina. I nearly jumped off the table it hurt so much.
“That’s your problem,” he repeated. “You need pelvic floor PT. I’ll get you a referral.”
And he walked out of the room.
Now That I’m In Pelvic Floor PT…
I could put all the pieces together and see that pelvic floor dysfunction isn’t really something that happened TO me. Nor am I powerless about it.
Yes, it sucks. Sure, I wish I didn’t have to deal with it.
PFD happened because I lived a life — a full life, with ups and downs, with trauma and tragedy, with love and joy — and I wasn’t aware of the impact that life was having on my pelvic floor.
Being unaware of something means you are powerless to do something about it.
Now that I’m aware? I’m not powerless.
I’m in pelvic floor physical therapy. (I have a seriously amazing pelvic floor PT!)
I do my homework stretches and exercises religiously, show up for my appointments, keep notes between appointments, ask all sorts of questions, and research at home.
My mind is, literally, constantly in my vagina.
Am I clenching or relaxing? How’s my posture? When was the last time I changed positions? How long did I go between trips to the bathroom? Am I using my diaphragmatic breathing?
I also share my story in any way that I can because PFD is probably one of the most common things to affect women — yet many women are suffering in silence or have no idea they’re suffering at all because they think leaking pee or painful sex is normal.
If you get nothing else out of this, please understand: just because something is common doesn’t mean it’s normal or healthy.
Where am I today?
As of May 2019, I’m 10 weeks into pelvic floor PT. Six weeks into PT with another therapist, I was dissatisfied and found a new PT. Best. Decision. Ever.
In the last 4 weeks, I feel like I have accomplished so much!
For one, my urethra doesn’t spasm anymore!! That’s HUGE.
Furthermore, the stretches and exercises that are my homework are so gentle, but I can feel myself getting stronger. I know better than to drink too much liquid, so I am in the bathroom a lot less frequently.
The thing I’m most interested in seeing is, how will PT affect my periods? Since January, my cycles have been “off”, and I’m working on some supplemental and hormonal fixes for it. But my physical therapist also said she’s had more than a few women report better and less painful menses after PT.
I know one thing for dang sure: I’ll never stop re-building the reserve of my pelvic floor with these exercises.
Even when my actual therapy is over, I’ll still be armed with knowledge to continue eating to support my pelvic floor health, breathing properly, using correct posture, changing positions frequently, and exercising and stretching in ways that will keep my pelvic floor strong and healthy.
Finally… A New Age
Our mothers, grandmothers, and great-grandmothers lived during an age where you didn’t talk about these sorts of things. It just wasn’t proper. So they suffered in silence or were deemed “hormonal” by their clueless male doctors.
But all that has changed!
We get to share our lives both with the people we know in person, but also with total strangers through the miracle of technology.
Blogs, social media like Facebook and Instagram, YouTube — all of it has opened up this huge portal of information, communication, and most of all, support!
We don’t have to suffer in silence because it’s ok to talk about these things now. We need to be able to talk about these things without fear or shame or embarrassment.
If you leak pee every time you jump, cough, or sneeze, you’re not alone! But you also need to talk to your doctor about it because, though it may be common, it’s not healthy.
My pelvic floor physical therapist tells women, “Incontinence is a choice.” And it is. Because if you’re incontinent in any form, you have pelvic floor dysfunction. Remaining incontinent for one more day without asking for help is a choice.
Is sex painful for you? Don’t go one more day without talking to your doctor or midwife. Ask about pelvic floor dysfunction.
Do you have any unexplained pelvic pain?
Demand to be referred to a pelvic floor physical therapist for a deeper evaluation if there’s anything going on down there that just doesn’t seem right.
It’s possible that you haven’t depleted your reserves yet — there’s hope!
Do you have a pelvic floor dysfunction story? If so, I’d love to hear it and support you!
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