With increasing painful symptom’s of tethered endometriosis of the bladder and bowel, chronic inflammation, pudendal neuralgia nerve involvement and myofascial trigger points and being misunderstood become apart of my life it gets very real.
This happens with multiple diagnosis’s pelvically.
So let’s talk about it!
There is a particular kind of unwanted suffering that comes from living in the overlap of conditions and cold shoulders surrounding them, argh the complex pelvic conditions.
Reoccurring Endometriosis on one side. Pudendal neuralgia on the other. Myofascial Trigger points on the other.
Textbooks like clean lines.
My body isn’t textbook doctors made it clear Im to complex but specialists seem to get how complex this can be, such lows and highs and isolation as well as liberation.
I live in the cross over where inflammation feeds nerve pain, nerve pain feeds muscle guarding, muscle guarding fuels more inflammation day by day. This isn’t episodic pain. This isn’t a “bad week” or a “flare that settles.” This is an ever-present, shifting landscape of pain that grows, morphs, I cant ignore it I cant define it sometimes its invisibility shrouds it in misunderstanding and becomes so hard to explain.
So I rely heavily on documented paper work, scans and specialists to explain this complex cross over and diagnosis’s.
So the hardest part? Explaining it plainly especially to medical professionals who are trained to look for single causes, neat symptoms, and simple answers – my proof is my paper, scans and test result trail.
“Inflammation as a permanent state, not a symptom”
Endometriosis is inflammatory. Pudendal neuralgia is sensitive to inflammation. When they coexist, my body doesn’t get to return to baseline. Inflammation becomes the baseline.
My pelvis feels, heavy, theres pressure pushing outward from the inside. My bowel burns, my bladder aches and stings, my abdomen feels reactive, my pelvic floor is constantly guarding. Sometimes the pain is deep and aching, sometimes sharp and electric, sometimes a corrosive burning that makes me feel like my insides are on fire.
And yet sadly none of this fits neatly into a single description.
Doctors dont even ask me questions anymore… I am always explaining but it shouldn’t be that way with a good GP.
The conversation isn’t full of questions anymore it’s all about action now, I need action or I lose badly… I shouldn’t have to lose it should be progress thats happening. I make the progress I want to see and I advocate.
My worst fear is can they even help me anymore or are they going to abandon me because of pain medication needs (not drug seeking obviously I have very painful documented conditions/pelvic disease).
Its now Surgery, last resort hormone tablets, anti depressants for nerve pain, pain killers for pain and inflammation, tens machines, heat/cold packs, physio, chronic pain psychologist etc …
Im there… Im past questioning its all about managing but with my recent diagnosis of reoccurring Endometriosis of the bladder dome tethering to the sigmod colon my pain worsening Im terrified of what this means to me and my life now.
“Pain that refuses to settle”
The pain doesn’t stay in one place long enough. It radiates into my bowel, bladder, urethra, vulva, lower back, pelvis, abdomen. It can trigger restlessness in my feet, an almost involuntary need to move, because stillness is unbearable my nervous systems trying to cope. Sitting is often intolerable. Standing too long is no better it causes inflammation. Lying down isn’t relief it’s just reduces flares slightly.
Endo crossing over pudendal neuralgia
Bowel movements create the burning tense and prolonged, like acid has been poured through my pelvis. My bladder can feel bruised, inflamed, hypersensitive Im doing what ever it takes to relieve flare ups. Trying to explain this out loud feels impossible.
“The language gap: where patients fall through”
One of the most exhausting parts of living with this crossover isn’t just the pain, it’s trying to translate it into medical language.
I know my body intimately. I live inside it every second of every day. But when I sit across from a doctor, I’m expected to compress years of complex, layered pain into a ten-minute appointment using terminology that feels both inadequate and dangerous.
If I describe too much, I’m overwhelming, If I describe too little I’m minimised.
But this pain doesn’t respect anatomy charts or basic knowledge its complex its painful and I have to live with that everyday. Being misunderstood hurts almost as much as the pain. There is a quiet devastation in being fundamentally misunderstood.
When doctors look confused, sceptical, it reinforces the feeling that I’m failing at explaining my own suffering. That if I could just find the right words, the right diagram, the right analogy, I’d finally be helped.
But the truth is: this pain is complex. It is multi-system. It is neurological, inflammatory, muscular, and visceral all at once, complexity doesn’t fit well into a healthcare system that rewards speed, certainty and simplicity. So theres a debate about where to even start or finish when there seems to be no end in sight no functional answer except exhausting appointments with specialists multidisciplinary course of action.
There is a slow erosion of what a normal life looks like anymore. Most people don’t realise how much grief woman feel with complex pain.
Meals. Car rides. Appointments. Social events. Work. Parenting. Studying – Pain is exhausting limiting me in how much I partake in my own life.
With pudendal neuralgia and endometriosis there is no safe posture only constant adjustment.
Every day becomes a series of calculations and thinking forward which normally you shouldn’t have to worry about:
How long can I sit before the burning starts?
How long can I stand before the ache deepens and I get inflamed?
How much can I do today without paying for it tomorrow?
Even good days come at a cost.
Family gatherings, special events, moments of joy they often leave me with days of increased pain and crushing fatigue afterward its not the standard Im tired from being out all day there is no comparison to being defeated from endo and nerve involvement. My nervous system doesn’t distinguish between stress and excitement. It all registers different to normal like my pain maybe a 10 to someone without my diagnosis but what sends someone to hospital I feel everyday and put up with it. You can only imagine that difference.
“The fatigue no-one prepares you for”
This is not normal tiredness. This is nervous system exhaustion. The kind where my body feels heavy, my brain fogs, and even basic tasks feel monumental with chronic fatigue and pain.
Living in constant pain is like running multiple background programs at all times. Pain processing. Inflammation. Muscle guarding. Emotional regulation. Advocacy. Self-monitoring.
Eventually, the system slows.
And explaining this to a doctor is another uphill battle. Fatigue is often dismissed but it is a direct consequence of chronic pain and nervous system overload.
Medication, stigma and survival mode.
Pain medication in chronic illness is rarely discussed with nuance. But when you live with endometriosis and pudendal neuralgia, pain relief isn’t about avoidance it’s all about functionality!
It’s about being able to sit with your child.
To cook a meal.
To study.
To exist without your nervous system screaming constantly.
To function during a flare or avoid a visit to the ER, sometimes the pain is so severe I do sit on the fence between going to the ER or staying home save myself the judgement. I have been there before and I was judged harshly – another system failure that other humans even if they are doctors or nurse’s would judge me with such debilitating diagnosis’s.
Ive been horribly mistreated for visiting the ER in severe pain and they honestly are awful its true for many woman who get to the point of no return without the correct methods or medication to go to the ER present with symptoms invisible to the eye and be treated terribly looked down on. I could write a whole blog about it!
The judgement attached to needing medication adds another layer of stress to an already overloaded body. Being treated like a risk instead of a patient erodes trust and safety two things the nervous system desperately needs to heal.
People call me strong. What they don’t see is the constant negotiation, the restraint, the grief, the recalibration out the other side of pain.
Strength looks like:
Parenting through burning pelvic pain
Running a small business while inflamed from sitting, the frustration of stopping and starting or waiting for flares to pass to continue.
Studying counselling because lived experience matters.
Advocating for myself even when I’m exhausted.
Continuing to seek care after being dismissed.
This is not weakness.
This is adaptation.
Living with endometriosis and pudendal neuralgia/myofascial trigger points means living in a body that doesn’t fit tidy explanations. It means learning a new language, one that blends sensation, emotion, endurance, and hope and trying to translate it into a medical system that isn’t always equipped to listen.
But I will keep speaking.
Keep explaining.
Keep naming what is real.
Because complexity does not make pain invalid and difficulty explaining suffering does not make it any less real.
If you live in this overlap too, know this:
You are not failing to explain.
The system is failing to listen.
And you deserve care that meets the complexity of your reality.
Cassie x
Welcome Beautiful 