There are days when chronic pelvic pain doesn’t just hurt me it oppresses me how doctors make me feel they oppress me (note – theres a genuine human woman in there trying to get out express herself with a confidence rocked by a feeling your not believed, family and friends can oppress me by not acknowledging or asking about my chronic conditions.
The need to live a full life others take for granted is so real to me, living a half existence compared to my former life of pilates, walking, running, beating the clock to rush through an assignment or project Im creating.
Pain oppresses you it sucks the joy out of things when you’re living inside your body that chooses to fight against you. When no-one talks about it or asks how you are or truly gets how tough this is, that someone could even fathom living with daily crippling pain like I do. The lengths I have to go to, to keep it under control or to express it to a specialist or doctor – surgeon!
I wouldn’t know I wouldn’t even attempt to understand how living with severe pain can be overlooked so easily like it’s another day another normal day.
Pain moves over me like a heavy weight, pressing down on every part of my pelvis crushing my pelvis my bladder and bowel (Endometriosis of the bladder and bowel crossed with pudendal neuralgia nerve damage).
It steals my energy before I’ve gotten my A into G. It can sometimes dictate my movements, my plans, my thoughts, and sometimes even my hope, pain oppresses what I need to breathe life into my world and others around me on the worst days..
People often imagine pain as something that comes and goes. A headache. A sore back. A broken bone that eventually heals. Healing has never occurred to me Ive been told this is incurable, with low confidence of it being curable.
Chronic pelvic pain is different, nerve damage is different.
It is relentless.
It is waking up already in pain and tired, because your body has spent the entire days energy fighting it and a nervous system on high alert sensitised 24/7. It is calculating movement, outing’s, every car ride, literally the chair you sit on.
It is wondering whether today will be manageable or whether the pain will completely consume you. It is grieving life that exists but looks nothing like you imagined.
The hardest part isn’t always the pain itself. It’s the way pain can shrink your world bit by bit piece by piece.
Society’s brutal too, how you are spoken to, comments from doctors and cynicism about medication or if you are helping yourself enough. God condemn me already grab the keys and lock me away for pain I never asked for, for pain a surgeon created for scar tissue and nerve damage from surgery’s they performed I didn’t ask to be like this this happened to me!
You begin saying no to invitations in my six plus years Ive said no a handful of times when pain was out of control, because I was afraid of the flare I had been in for days. You stop making promises because you never know how your body will behave. You fake sniles while your nervous system is screaming while you feel nauseated and dizzy. You become incredibly skilled at pretending you’re okay because explaining the reality feels impossible. Also selling yourself – your story to be believed when you have all the proof in the world of your conditions.
There is a loneliness that comes with invisible illness. Black out loneliness.
People see you standing, smiling, shopping, laughing for a few moments, and assume you’re doing well. They don’t see the medication that made those moments possible. They don’t see the hours spent recovering afterwards. They don’t see the tears shred in private when your body finally says, “I’ve had enough.” Unfortunately my lucky strike has been my supportive children and amazing husband he see’s me through as I do him, he gives me strength when Im oppressed with chronic pelvic pain and all its miserable complexity’s.
Living with pelvic conditions like endometriosis, pudendal neuralgia, and persistent pelvic pain means living in constant negotiation with your own body.
Seeing specialists and doctors and physio’s and phycologists .. none of which I wanted I never wanted at this time in my life where I want to be successful and career driven… I suppose chronic pelvic pain looks different for us all when it comes to those things.
You bargain.
“Maybe if I push through…”
“Maybe if I rest…”
“Maybe tomorrow will be easier.”
“Maybe the doctor will be kind and ask me less about medication rather listen to why I need it this week and magically believe me entirely (another society fail)
Sometimes tomorrow is kinder.
Sometimes it isn’t.
The emotional weight of chronic pain is rarely spoken about. The guilt. The frustration. The fear of becoming a burden. The exhaustion of advocating for yourself over and over again. The pressure to prove your pain is real.
Pain doesn’t only affect muscles and nerves.
It touches confidence.
Relationships.
Motherhood.
Work.
Dreams.
Identity.
There are days when I don’t recognise myself entirely (but shes in there). She will never leave not until the race is won.
But I’m learning something important.
The woman I am now isn’t weaker.
She is carrying more than most people will ever see.
Every appointment attended.
Every flare survived.
Every morning I choose to get up despite the pain.
Every time I show kindness instead of bitterness.
Every time I ask for help instead of suffering in silence.
These are not signs of weakness.
They are acts of extraordinary strength and faith the survival instinct we are all born with, my belief system is strong.
We have to have a strong inner belief and strength with chronic pelvic pain we truly do more than most.
If chronic pelvic pain has made you feel oppressed or society pedalling you like an outcast for what you never wanted or asked for, I want you to know this:
Your pain is real.
Your exhaustion is understandable.
Your grief is valid.
You are not lazy.
You are not dramatic.
You are not failing.
You are surviving something incredibly difficult every single day.
And even if your world feels smaller right now, your worth has never become smaller, your worth in this world hasn’t changed.
One day, I hope people understand that chronic pelvic pain isn’t just about pain.
It’s about carrying an invisible weight that never asks for permission before climbing onto your shoulders.
Until then, those of us living this reality will continue to lift one another, speak honestly about our experiences, and remind each other that surviving is sometimes the bravest thing we do.
Today, if all you managed to do was make it through the day, that is enough.
And tomorrow……..
Try again beautiful.
Cassie x
Welcome Beautiful 