Fatigue has been one of the hardest parts of living with chronic pelvic pain, not because it’s the most visible part of chronic pelvic pain, but because it’s the least understood part of having endometriosis, pudendal neuralgia and myofascial pelvic pain.
When you live with endometriosis and pudendal neuralgia any pelvic condition, exhaustion isn’t just being tired. It’s a deep, all consuming heaviness that doesn’t lift with sleep and doesn’t disappear with willpower I have to reluctantly roll with fatigue no matter what I have going on. It seeps into everything when it hits, you can’t hide from it. You have to understand its not your fault or your way of living, its temporary it will come and it will go. It changes how you move through the world when it hits after some big event, errands or hanging out with friends.
For a long time, I thought I just wasn’t coping well enough or had a bug or viral until I realised when I had an event or something significantly and energy consuming happen that I felt this way. I thought if I rested more, tried harder, stayed positive, I could outrun it. But there is no point my energy just diminished, it does take me off guard every time.
When a “Normal” Day Costs Me Days
Over the past six months, patterns have emerged how fatigue takes over after something thats physically and mentally invested in my pain and inflammation to wipe me out after a big day or too much physical exhaustion.
Any long day, event, or gathering now comes with no guarantee I wont feel this way. Even ordinary days take an extraordinary amount of effort from my body if Im cleaning up running errands my body’s reaction is questionable but the answers are found in my documented diagnosis’s and how it has changed the make up of my nervous system and pain levels.
What looks like a normal day on the outside requires mental awareness, emotional regulation, and nervous system control and that is just the truth surrounding my day to day. But I am able to do it with a smile at the best of times and other times pushing myself harder than any normal woman should have too.
In the moment, I’m present. I’m engaged. I’m immersed in what I’m doing. I look like I’m coping.
But underneath that, my body is borrowing energy it doesn’t actually have and its horrible to admit it but this has been happening lately and it isnt easy to openly talk about. But the truth is “it is the truth” and I am dealing with the fatigue and listening to my body, supporting my bodys needs.
When the day ends, the crash comes depending on how intense the day was.
The fatigue doesn’t creep in, it hits me out of no where, my pain ramps up and my body feels unbearably heavy. I become overwhelmingly sleepy, sometimes to the point where I feel like I might pass out. My system shuts down, and recovery take’s hours sometimes days.
Special events are the hardest.
Days out with friends and Family gatherings.
Moments that are meant to be joyful require me to push past pain, override exhaustion, and stay mentally present far beyond what my body can safely handle in some situations, trying to keep up with the person who I want to be “or was” verse the person who lives with chronic pelvic pain conditions now. I want to be there. I am there. But the cost always comes later.
Pushing Through When Life Doesn’t Pause
This has all been happening during one of the hardest periods of my life, toxic doctor, two blocks, surgery in three months, reoccurring endometriosis of the bladder/bowel and supporting my partner through a brain tumour and his surgery and recovery also caring for my three young boys and my ambitions for my life.
That alone takes strength I didn’t know I had. There’s emotional weight, fear, responsibility, and constant vigilance. I push myself to function like everyone else because I have to. Because life doesn’t stop. Because the kids still need me. Because love demands presence always.
Because life happens and you don’t have a choice.
But I’m not everyone else.
When I push through, my body pays for it. Not immediately but it does after a big day it’s not normal and I would never accept it as normal.
Pain increases.
My nervous system overloads.
Fatigue takes over in a way I can’t negotiate with or power through.
Recovery now feels less like resting and more like repair.
Living in a Body That Never Fully Rests.
Endometriosis doesn’t switch off.
Pudendal neuralgia doesn’t take breaks.
Myofascial pelvic syndrome is unpredictable and always presently affecting me daily.
My nervous system is constantly managing pain signals like burning, pressure, hypersensitivity especially around sitting, bowel and bladder function, or being in one position too long. Even when I’m still, my body is working overtime daily I dont truly ever get completely comfortable these days.
Sleep doesn’t always help. Rest doesn’t always restore me. There are days where I do very little and still feel completely depleted when I wake.. its the reality of chronic and painful conditions I live with.
That’s one of the hardest things to explain: fatigue isn’t caused by doing too much. Sometimes it exists because of a painful day or sitting too long and struggling with inflammation. Not just from a frantic day or busy gathering.
The Payback Comes Later.
One of the most confusing and isolating parts of this kind of fatigue is the delay.
I can get through a day and think, maybe I’m okay.
Then the next day or the one after my body gives in to fatigue.
The pain is louder.
My limbs are heavy.
I feel disconnected, flat, and overwhelmingly tired. Sometimes I can barely stay awake past nightfall. It’s like my body keeps score quietly and collects later.
The Grief No One Sees
Fatigue takes more than energy. It takes pieces of your identity.
It’s grieving the version of myself who could be spontaneous. Who didn’t have to calculate energy or recovery. Who could show up without consequence. That was me five years ago and I grieve her freedom to do what she felt, but I keep souly and mostly focused on who I am now and what I do with my time and how much energy I want to expend on outings and people I see. It’s the guilt of cancelling plans sometimes or not staying as long as Id like too. The fear of letting people down. The sadness of looking “fine” while privately Im tired and spent outside of my control.
It’s feeling like your world gets smaller not because I want it to, but because my body enforces limits whether I accept them or not.
I’m learning to listen even when It hurts
I’m slowly learning that pushing through isn’t strength if it ruins you. It’s survival in the short term and suffering in the long term. But strength is what it takes to understand limitations and give yourself a break if it gets abit much.
Pacing isn’t giving up, It’s the only way I can keep going somedays with all that craziness three boys throw at you, what life throws at you.
That means stopping before I crash. Leaving early. Saying no more often. Letting go of expectations including my own.
(People who love you and except you will understand with kindness and accomodate it 🤍)
You’re Living With This Too Beautiful?
If your body shuts down after “normal” days…
If joy comes with consequences…
If fatigue feels disproportionate and misunderstood…
You are not weak.
You are not failing.
Your body is carrying more than most people will ever see.
And the fact that you’re still showing up when you can is not failure.
It’s endurance, strength, drive and the will to survive through all you have been through.
May all the grace and love be with you.
Cassie x
Welcome Beautiful 