Im Cassie and I have chronic pelvic pain more specifically pudendal nueralgia and other separate pain areas in the pelvis, I advocate for the select woman who feel their voice isn’t being heard by podcasting and writing blogs about living with chronic pelvic pain.
Ive wanted to discuss advocating for yourself for so many reasons one to empower yourself loving with this debilitating health condition and the forms it comes in for us as individuals – when its invisible to the eye and taking positive steps to get yourself ahead while living with chronic pelvic pain
Thank you for joining me today for the written version of episode one of my podcast show, Advocating for yourself with chronic pelvic pain.
You can find it here
https://www.podbean.com/wlei/pb-bpygw-16f1905
Embracing the practice of self-advocacy is a transformative journey that empowers us to assert our needs, set boundaries, and pursue what we are looking for with confidence and determination.
By advocating for ourselves with chronic pain we gain back our self-esteem, embrace our situation better and develop resilience.
Moreover, self-advocacy lays the groundwork for healthy relationships built on mutual respect and open communication which is challenging being faced with chronic pelvic pain.
Navigating the complexities of self-advocacy can sometimes feel overwhelming, especially when faced with chronic pain challenges.
I can only speak from my own experience of four years I have had Endometriosis and currently reoccurring endo, Adenomyosis, Pelvic Nerve Damage, three major pelvic surgery’s and one minor surgery, four steroid procedures.
I currently see a pain specialist, senior pelvic physio specialist, private gynocologist, doctor, rheumatologist.
I have had countless mris, scans, cts, bone scan and blood tests and are currently on medications.
Advocating for myself on this challenging slow journey has been a real rollercoaster ride of emotions, finding my voice and being able to express the complex nature of my circumstances to a medical professionals, friends or family when never fully understanding it myself Im still finding out things about my chronic pain and contributing factors.
That comes with going through this for so long you begin to understand things better and learn how to carve a path with your invisible pain.
Knowledge didn’t come to me naturally I had to find it for myself research and be patient.
It’s not easy trying to explain unseen pain we know its not seen by the naked eye like many debilitating pelvic conditions sometimes even scans can not pick up clearly endometriosis, adenomyosis, nerve damage, or the very reason we have chronic pelvic pain its daunting and hurtful your relearning your body your life is flipped on itself in a way and you can expect great experiences and the lowest of lows.
It is very likely that you know a girl or woman with persistent pelvic pain although you may not be aware of it. This medical condition affects approximately 15-25% of Australian women, with huge impacts on quality of life, relationships, workforce participation and mental well-being. Not many people talk about pelvic pain and there are many women who suffer in silence but this condition is more common than asthma – so we need to bring it into the conversation.
The things I have experienced go far beyond the normal the pain the ridicule the diagnosis the fear and anxiety I feel, the denial, the isolation and dark olaces my head has gone. Mentally and physically being affected daily by my chronic pelvic pain the only way to move agead was to be truly honest with myself and advocate my feelings myself in everyway to know how to manage my pain and search for some answers to my questions and find the strength to advocate for myself for peace of mind.
Having chronic pelvic pain can create havoc in my life and the pain can be severe till Im nauseated and overwhelmed enough to pass out from pain it sets me back days.
Triggers can cause flare ups in my pelvis
Physical activity, sitting to long, standing to long, sex, lifting heavy things, bodily functions like toileting, period cycles and hotmanal changes create more pain and havoc, lying down on my tummy or back.. waking up and beginning to move actively.
Many woman live with this everyday.
Like many others who suffer this is a daily thing and it can cause us to feel insecure, depressed, isolated and feel our worth is stripped. It takes alot of mental strength to mask our pain or how we feel and overcome daily pain to develop new coping mechanisms and realise what worked before just doesnt cut it now.
We do however find our rhythm.
Chronic pelvic pain was not something I have ever wanted or brought on myself these things have happened to me through what my bodys endured the traumas to my nervous system my physical body’s been invasively operated on.
I have had to be patient and reach deep to not allow medical gaslighting of my chronic pain as something thats neuropathic or in my head.
Only you know best what your body’s challenges are and whats been done to get you there sitting in that docotrs office trying to find answers..
Or possibly you’re still figuring this out, either way my heart goes out to you I feel the suffering you feel thats hard to evade.
Waiting to be heard by the right person to be told its going to be okay you will find a way through this.
It can feel all to overwhelming sometimes and over shadows our lives some days as it strips us of our coping mechanisms for me exercise was an explosion of endorphins and made me feel empowered I now cant but as the past few years have shown me you define what your body can and cant handle you decide what will work for your pelvic needs and what wont don’t let a medical professional limit what you should and shouldn’t do in this modern world of alternative practises
Chronic pain can sometimes limit us we do have to dig a-lot deeper than most to pave a new way of thinking and challenging ourselves to make new coping mechanisms and find our inner strength and that positive voice telling us to push on.
I believe advocating for yourself and not being afraid to question the expert, they can be wrong and lead you down pointless pathways scans, tests, false diagnosis without proof…
Seek the proof and ask the questions especially before taking medication, research alternatives like a holistic approach I definitely have benefited from it, question a diagnosis and the lack of one.. seek a second opinion if need be if your intuition knows something doesnt feel right keep going keep trying.
As many woman discover with pain you cant see is many medical professionals will brush you off or treat you like its in your head or misdiagnose you through lack of knowledge in this grey area in womans health., being told it ls neuropathic.
Different medical professionals have different view’s or a specific set of skills and set ways it can be bewildering but there is a golden light at the end of the tunnel as you will eventually find your way with someone medically or holositcally who will help you navigate your pain successfully or to a degree you can make a plan to reduce or manage your pain so it stays base line.
No one knows you better than you know yourself.
Discover that sense of self confidence to speak up for what you believe in and stand up for yourself when needed. You can boost your confidence by talking positively to yourself, setting goals, taking risks, and practicing mindfulness.
Finding my voice living with chronic pelvic pain
Never did I ever think I would face such a big ball park of challenges with Chronic Pain let alone live with it daily for the past four years, I have had to confidently make tough decisions for my body. The medical industry is filled with confusion and the amount of times Ive had to stand my ground on how I feel intuitively against people who don’t know me from a bar of soap explain myself/situation over and over again and surpass the judgement from them. Its isolating and can make you question yourself your situation even your pain.
Theres a toxic element to living with Chronic Pain its daily, effects your lively hood your existence, relationships and views of the world but one thing it cant take away is your ability to believe in yourself, know your body’s needs and wants the right to be given the best chance to overcome your pain.
It hasn’t come easy for me to get the help required to even be diagnosed or receive the right treatment. Its to easy to just give bandaids of medication but these also have side effects.
Mostly I had to take things into my own hands seek “private” costly advice and medical intervention.
I have had it out with pain specialists, GP’s/Doctors, challenging my very belief in myself which wasn’t fair there where no grounds for them to treat me so disgustingly and unprofessionally. Ive seen experienced Gynocologist’s who had empathy and respect for how I feel which was encouraging.
Theres innovative people out there who will set you on the right pathway theres always someone out there you just have to find him or her.
Mistreatment in the public system is a real thing but don’t waste your time go seek help elsewhere if your treated this way your quality of life is so important to you, your children, your partner your family and those who care dearly for you, keeping looking for way ahead.
First and for-most Im a mother, sister, daughter, wife a friend and an intelligent woman who has lived a full life my life has meaning and depth Im going to set a standard of the care my body deserves and the way its addressed.
I dont confine yourself to the contrary and take the time to decide for yourself what you believe is right or wrong. research your options, specialists and the referral’s you can obtain for the practical nessasary care of your chronic pelvis pain.
The one thing I know to be true is this isnt going away anytime soon seeking a diagnosis for pelvic pain is a slow journey and you must be patient and find the right specialist who you feel is validating your situation who is honestly listening to you. Never understate how you are feeling to please another even if its a medical professional they get it wrong too!! We are all human at the end of the day.
Giving a voice to your thoughts about your body and acting on it is so essential advocating for yourself about your chronic pain is so important, Do not let anyone tell you you have to do something if you don’t feel its right ask the questions and sit on decisions take your time to understand all the possibility’s and find the best course of action for you. look into alternative methods you have the right to choose and take your time its your life and body to manage Don’t be pushed into anything you dont feel comfortable with get a second opinion advocate for yourself.
After nearly four years I am only finding out the reality of what Im dealing with moving in the right direction and finally receiving some honest informative guidance I needed years ago but it was me who got me there I was let down but I kept pushing for a better quality of life
If I didn’t advocate for myself I couldn’t have made the progress I have I followed my gut instincts, knowing better knowing what was right and wrong for myself..
Im far from gaining back my old life but more creating a new improved version of myself by accepting that this journey of healing is slow and accepting the good with the bad .
I feel empowered that Im doing all I can and not giving up or taking any shit from anyone who tells me I cant do anything I beleive is right for me or my body,
Also if you find friends or family dont have empathy or try to understand just remember you have support from other woman everywhere who share your feelings on fb, podcasts, books and more!
Thank you for joining me for my very first episode Advocating for yourself with chronic pelvic pain the written version of my podcast which you can find here
https://embracingchronicpelvicpain
I hope by sharing my story I will inspire change or give hope that our options are not limited and we can make a difference for ourselves by listening to our body’s needs and never giving up on ourselves but to move forward even when the odds of diagnosis seem distance or being pain free is some distant dream..
Keep advocating for yourself you have got this beautiful, till the next episode. 🩷
Welcome Beautiful 