You survive and you will persevere with Chronic Pelvic Pain
Perseverance is about rising each time you stumble, learning from each fall, and pressing forward one step at a time.
From endometriosis to pudendal neuralgia… and in-between this is for you.
I have included specialists I see and how often, plans for cheaper access to physio therapy and psychology and daily tools for easing pelvic pain, just from my own experience living with chronic pelvic pain.
The years of misdiagnosis and being brushed off and mistreated for my severe pain left me to live in a constant state of protecting myself mentally to my body from head to toes never fully trusting anyone medical, from being told many negative things by “so called medical professionals” you would think Im some foreign alien speaking another language or maybe they just have no clue how to manage it, your guess is as good as mine.
Before the pin dropped with major surgerys, endometriosis, adenomyosis, pudendal nerve damage and myofascial pelvic pain syndrome. I never knew of this world, world of misdiagnosis, medical gaslighting and being dismissed and treated awfully over medication and seeking help for this chronic pain that was apparently in my head until diagnosis’s where found time and time again over time but one problem fixed another popped up.
I never used to go to a specialist let alone my GP unless it was related to my children or a flu, so I never imagined I would ever be treated the way I have been over the years by medical professionals. I always trusted them or was treated respecfully by them until I wasn’t. So imagine my shock and horror when that bubble burst with chronic pelvic pain, it was an absolute shock!
I know how hard it is to physically and mentally correct five years of dealing with chronic pelvic pain, I have been let down and I am still sadly in that space with my current doctor we will just call “Dr Karen” just one person detesting me, being dismissive and threatening to end the doctor patient relationship if I dont bend to her will in every appointment surrounding my pain and pain medication and not embracing facts surrounding my longterm chronic pelvic pain management and how hard I work on my diagnosed conditions. I am working hard with other specialists to reshape my thinking surrounding chronic pelvic pain entirely (its not an overnight task) and hear comes “Dr Karen” she is the second doctor I have had in over a decade my prior doctor of nine years couldn’t keep up with the complexity of my chronic pelvic pain and pulled the pin and in March of 2025 “Dr Karen” seemed willing and open and keen to help until she started to change and show her true self, now I have this terrible doctor who makes each appointment painful and awkward.
I am looking again for a new Gp but I had such a good track record until my Chronic Pelvic Pain became hard to manage and more complex. So many woman go down this path and its so tough, so tough with a full plate of work, study, children and relationships already to contend with. Having consistency is important when you need longterm management with chronic pelvic pain. Im discovering it is hard to come by, most doctors aren’t cut out for it or patient enough when results don’t come thick and fast for them. Or they are not willing to accept this isn’t just something that goes away overnight it takes time and there are good and bad situations that come with chronic pelvic pain. It’s not a flu it’s long term chronic pelvic pain and in my case fully diagnosed by specialists, so where is the care I wonder, Dr Karen hasn’t got what it takes to be bold enough to understand this doesn’t come with a deadline to meet its complex.
Specialists and Chronic Pelvic Pain
I am a part of a network of specialists who help me learn and understand my pain and how to approach it mostly, my family doctor “Dr Karen” is just a tiny part of an intricate larger network of people I need to tap into management of my complex chronic pain…
I always tell myself this has happened to me I didn’t do this to myself this happened from Scarring, surgery mistakes and some out of my control, I never wanted to live with this awful condition, but Im 100% on board about advocating for myself and the long road of healing working alongside specialists.
Specialists you may need when living with Chronic Pelvic Pain or endometriosis/adenomyosis and many chronic pelvic conditions.
Here is a list of Specialists surrounding care for my Chronic Pelvic Pain. (This can be for anyone with different pelvic conditions)
Pain Specialist – I see every six months
Private Gynocologist – I see every six months
Pelvic GP Specialist – I see every six months
Exercise Physiologist – I see every month
Chronic Pain Psychologist – I see every three weeks
Gp/Doctor – for general care and medication scripts
Heres a list of tools I use daily
Large heat pack
Large cold pack
Tens Machine
Medications
Exercise/Stretching
Plans
I received a Chronic Disease Health Plan from my Doctor – this gives you five discounted sessions via medicare australia for physiotherapy variety’s.
I received a Mental Health Plan from my Doctor – this gives you ten discounted sessions for Chronic Pain Psychology sessions via medicare australia.
It nags at me chronic pain, “This is real” although pain medication and other nerve related medications is needed to help, it’s so frustrating because it’s apart of a routine everyday that I never wanted, not in my wildest dreams. But I still persist anyway with it all.
I find peace knowing I do all I can and my chronic pain doesn’t define me, but realistically it takes time and patients few doctors don’t seem to have truly it’s so disappointing. I realise now not all medical doctors understand how aware I am of everything surrounding my pelvic pain or what I know my knowledge is there Im invested in my self-care and have spent a-lot of time researching my diagnosis’s and conditions surrounding them, Im undermined and spoken down to its intolerable! So I push through being treated differently, compared to someone going to see a doctor for a script for a flu or something or lot less demanding for a doctor.
I am treated differently and I have to be 100% accountable for seeing specialists surrounding medications and continuing my care taking accountability and doing the work to improve and adjust all the time.
“Like I said earlier… I never imagined this happening five years ago not even in my wildest dreams”
Does this sound familiar?
You over heat your heat pack all the time to feel the burny relief on your pelvis, you turn up your tens machine to full blast to feel relief you sit and question the medication and whether it even makes a difference at all, or question your pain, you curl up in fetal position to try stop the pain, you are sensitive to someone touching you pelvically. It’s all the above that chronic pelvic pain demands of us!
I’ve been in chronic pelvic pain for five years – thats a large chunk of my life. Its engulfed a big part of my late thirties and early forty’s. Im 42 years old – its not where I imagined my life would be right now but I am working hard to reach other goals like studying for a career in woman’s mental health surrounding pelvic conditions I live with and small business goals and growth.
Restarting again to find new coping mechanism’s over the years has been a big learning curve, what worked for me before doesn’t now its a true honest journey of change by my pelvic pain and circumstances surrounding that. I see a chronic pain psychologist, pain specialist, exercise physiologist (after an intense year of pelvic physio therapy), getting block injections from my pain specialist every six months theres nothing real just talk and expectations just rushed and not actually helping me longterm just bandaid appointments sometimes I wonder if they even actually knew my name if it wasn’t on an appointment schedule, my gynocologist I see every six months also for a pudendal nerve block, it is experimental to see what works and what doesn’t, but Im getting there.
I try work on reconnecting to myself mentally, physically and spiritually personally but sometimes I feel so conditioned by the demands of a GP or a specialist because they try to groom me to fit their expectations even if it is unrealistic when it comes to pain, then your left high and dry or left wondering if you’ve made the right decision or said enough longterm with the person that you see. But connecting deeper inside to hold onto the strength thats been there all along is key… Im still cassie just working on myself with this thing I didn’t want – Chronic Pain.
I do the work and how ever Im treated I just do my best with the advise if its positive because I respond better to it. I love time for enjoying life and those moments of solitude away from chronic pain talk and the doctor’s views on it before repeating the processes again. Just working away on things around my family and support network who don’t just see me as someone thats something to control and manipulate or drive down like doctors can with complex chronic pelvic pain.
Constantly moving forward.
My healing involves encouragement from the right types of human support, not just doctors, I need strength and patient’s from within, learning to be content with small feats and gains all the while enduring set backs living with unpredictable pain like flare ups and the understanding that things are beyond my control and shit happens.
Although I get worried a-lot of the time that “this will never end”, I can still find calm in the chaos. Those Calm moments is something I know as brief fleeting moments dealing with complex pelvic pain, even though I know my pain as apart of my life Im never fully accepting it either. My life is important so is my identity as a mother, sister, daughter and individual who deserves kindness and respect.
I will never accept it as apart of my life forever, ever.
Trauma manifests
My body aches and does not relax some days, I tremble sometimes for no reason my nervous system is over sensitive to pain so manifests trembles and bodily reactions. My pelvis is the worst and my bowel at times it feels like lightening hits me up there or burning sensations from nerve pain from nowhere and the inflammation can be horrible thats from sitting to long or standing to long being to active it gives me inflammation/pain. It literally manifests from the traumas in my pelvis, rewiring my brain and nervous system is why I see specialists, it takes patients and time.
So inbetween…
It’s an investment in yourself to relax your body, I sometimes feel so weak, trembly and I do get frustrated by those things I can feel stuck unable to continue what it is Ive tasked myself to, like Ive failed myself but those moments don’t define me or if your reading this it doesn’t define who you are either.
One bad day doesn’t define me, no matter how small or big or how long the feeling last’s. If you’re like me in anyway, here in the middle of it all, ground yourself take five deep breaths and pick yourself up, these negative feelings associated with pain and bad days will pass, I promise! Look at how far you have come and how much you have achieved and dared to face about yourself living with chronic pain.
I want to let go, tell myself I’m safe now. I can enjoy a win from time to time and celebrate my accomplishments so far in life, theres a-lot to be grateful for and that makes me happy, it is what life’s all about counting those blessings.
After enduring relentless pelvic pain from adenomyosis, endometriosis, three major surgery’s, three smaller surgery’s one as recent as September 2025 the month we are in now, many nerve block procedures and enduring some shitty talks with doctors over the years who seem to have a judgy undertone surrounding my pain misguiding me and then diagnosis’s (a diagnosis is a win!) There are doctors and surgeons who do share positive competent views as well who understand how painful procedures are how much trouble they cause afterward its a shame I don’t seem to snag me one of those as a regular GP Doctor!
All I want is to let go of my burdens surrounding chronic pain and all Id like is to heal. I want to free myself from being stuck inside my head about everything somedays crying out for help silently, not trusting, fearing not being treated fairly for where Im at now with my Chronic Pain. I have my challenges daily with it, my struggles but I have found a way through and I’ll continue too.
Even though my past experience pelvically has most definitely traumatised me physically and mentally and neuropathically its all a work in progress towards the goal of being as pain free as possible.
So keep looking forward ahead and go forth… Never give up
There is still hope, there is still sunlight at the end of the tunnel. I want to be proof you can persist and acheive wins big or small, that set backs are apart of this chronic pelvic pain journey and all I want is to continue to heal and grow regardless of wayward doctors and their small minded ideals.
I cannot predict what will happen or not happen. All I can do is be present, I can manifest good things because I’m hoping and have faith for what might happen in the near future for myself.
I try so hard to remember to relax. Most of the time, I have no idea that I am tense truly, I can’t believe that I have been spending my life this way on and off for five years, I literally have to retrain my nervous system and Im still working on it to this day.
“I am safe I am going to be okay, someday this will be behind me”
I dont owe anything to anyone I do the hard work I fight my fights with advocation for myself and in some way for other’s who are in my shoes surrounding the same fight for normalcy to be treated with dignity and respect.
I am human and surviving. Noone knows the amount of endurance it takes to live with chronic pelvic pain unless you have it yourself.
Don’t buy into all the medical bullshit stay true to yourself, you know they are all the same and you will do better thinking for yourself, it takes time and everything will work out eventually if you never give up on yourself, your hopes and your dreams hold them higher than ever and never drop your standard’s of how you wish to be treated with chronic pelvic pain and your priorities… your focus.
You’re not stuck, when your perspective shifts it becomes easier to notice your real very capable self.
You survive and you will persevere.
Enjoy your journey
Cassie x
Welcome Beautiful 