I never imagined I’d become someone who writes about chronic pelvic pain. I never planned to talk publicly about endometriosis, pudendal nueralgia, myofascial pelvic pain or the chronic pain I live with, within the structure of a pretty normal lifestyle to me I have to live with Chronic Pelvic Pain, like so many of us it’s not exactly the kind of thing anyone dreams of making apart of their life’s topic or imagine discussing it.. but it needs to be addressed, no-one truly wants to suffer alone with Chronic Pelvic Pain – we want to be heard at the least, taken seriously so we advocate for ourselves, Im advocating for others to know they aren’t alone by bringing honesty and talking the talk also walking the walk.
But somewhere along the line, after years of being dismissed, ignored, and shocked at how the medical system leaves woman and men in this grey area surrounding pelvic conditions. Some of us are just left to piece ourselves back together after every setback, toxic conversation or debilitating flare up, I realised something: staying silent wasn’t helping me at all the isolation, surrounding ignorance and minimising discussions of how seriously this has affected my life. It pushed me toward expressing myself through writing.
Not sharing definitely wasn’t helping anyone else walking the same path either so blogging began.
I previously blogged, but not about my Chronic Pelvic Pain origins and diagnosis’s. So its unique to me doing this and may shine some light on someone’s (kept under lock and key) feelings surrounding their pelvic pain.
Chronic Pelvic Pain has a way of stripping you down layer by layer not just physically, but emotionally, mentally, even spiritually. It tests every single part of who you are, you suffer trauma and that can be from a large flare to bouncing back from it and everything in between, surgery, unable to do what you used to do, challenges you didn’t think where even possible or diagnosis’s that you didn’t dream of having . It makes you question your strength, your worth, your body, and sometimes even your sanity. You can be doing “everything right,” and still end up in tears wondering how something invisible to the eye can hurt so much inside.
For sometime, I did what I thought I was supposed to do. I truly trusted toxic doctors against my better judgement, followed advice, I kept pushing through. But I learned the hard way that not every doctor listens or believes you. The things Ive been told by individual medical professional’s during the time when I needed to place my trust in them (to feel safe made things increasingly stressful and complicated. Not every system is built to care for complex pelvic pain, its a difficult area, even pain specialists struggle to understand (They wouldn’t admit it though) but on occasion someone will say we are learning like you so it is definitely a grey area an area of growth in medical intuitions.
Ive been told Im too complex by doctors who selfishly want a normal patient not someone complex and palmed off with toxic behaviour surrounding medication or having a say about my own situation, minimising my pain or diagnosis and dismissing me. I can feel them pushing me away (unwanted for something I cannot help). It hurts, I rely on a doctor to coordinate specialists and medication but I am also “human” also someone who is sick of being in survival mode. I just want to be treated fairly and listened to acknowledged.
I’ve had doctors write off my symptoms, send off dodgy awful referral’s to specialists, dismiss my history, make the wrong decisions without really deeply looking at the cause. I’ve been told to “just manage it “lower my medication,” as if pain that’s dominated my life for years can be simplified that easily.
I’ve had surgeries. I’ve had blocks. I’ve got the scars, the tears cried over many years of being in survival mode trying to stay a step ahead to get the care I deserve, the heightened pain from recovery of procedures/interventions dismissed, the hope that maybe this time things would finally get better.
But even with all that, the pain remains an unwanted companion – unwelcome, but constantly in my life. It doesn’t care if you have plans, if your kids have sport, if you’re already stretched too thin. It’s there, tapping on your shoulder when you least expect it.
But still I write.
There are so many of us living in this in-between kind of world, not sick enough to be “urgent,” but far too unwell to live the life we used to. We carry invisible pain through school drop-offs, through jobs, through family life, study and through “trying to be okay.” And I know how easy it is to feel invisible in that.
When I started sharing pieces of my story, I didn’t expect much. But people began to message me women saying, “That’s exactly how I feel,” or “I can feel you, you have my support.”
That’s when I realised how much power there is in being honest, sharing and being open.
Advocacy, for me, is not about being brave all the time or seeking approval or attention its about community and awareness. It’s about being real. It’s about saying, “This is hard, and it’s okay to say it’s hard.” It’s about showing the truth of what it’s like to live with conditions that still aren’t fully understood or respected endometriosis, pudendal neuralgia and myofascial pelvic pain syndrome things that can’t always be seen on a scan or by the eye, but completely reshape a person’s life.
I advocate because I’ve seen how easily people with chronic pelvic pain get left behind. I’ve seen how quickly medical care can become judgment instead of help. I’ve seen how words like “drug dependent” can be thrown around without context, ignoring the years of suffering and procedures that came before. And I know the toll that takes on a person’s spirit.
But here’s the other side of it I’ve also felt resilience like no other, gaining strength and clarity about how my care is organised stepping up to advocate my needs.
I’ve seen people keep going despite pain that would drop anyone else to their knees. I’ve meet women who advocate not just for themselves, but for others, while managing their own daily battles through pelvic pain workshops.
There’s a quiet strength in people that respect themselves enough to recognise the power in their struggle out in the world. Recognising the infinite strength to push through everyday!
Writing is my way of fighting back.
It’s my way of taking the narrative out of the hands of those who dismiss it and giving it back to those who live with it.
It’s my way of saying, “You’re not alone, and your pain is valid.”
If someone reads my words and feels less isolated, if it gives them a bit more courage to ask questions or demand care that’s compassionate and informed — then that’s what makes it worth it.
Pelvic pain may have taken a lot from me energy, health, time, even trust in parts of the medical system but it’s also given me a purpose I never expected.
To speak up.
To advocate.
To help others find their voice when theirs feels lost.
I don’t write because it’s easy.
I write because it matters.
And because I know somewhere out there, another person is sitting in the same waiting room, in the same pain, wondering if anyone will finally listen.
And if they find this I want them to know:
I see you.
You’re not invisible.
And you’re not alone anymore.
Cassie x
Welcome Beautiful 