Im Cassie and I have lived with chronic pelvic pain more specifically pudendal nueralgia with reoccurring endometriosis in the pelvis.
I have endured major surgery’s and many procedures having endless conversations with doctors, sitting through doctors appointments investigating my pain and navigating it all the while dealing with chronic pelvic pain and the debilitating days that come with it, becoming so good at hiding this from the world but Ive had enough of feeling creating cover ups, masking my pain, feeling invalidated and misunderstood so this is my way of leading a pathway forward and cheering on other woman who have had to sacrifice so much. Woman who are misunderstood/misdiagnosed with pelvic health conditions/illness contributing to chronic pelvic pain.
Invisible pain…
Im on my eighth month from my last epidural block and pededal nueralgia steriod injection (both have worn off) Im struggling everyday with chronic pain and in full blown survival mode. Feeling fatigued and ready for change always, my next epidural block is a few days away it couldnt come soon enough! Im at my lowest point the past few months have been extremely difficult its a hard push with severe pain, difficulty functioning all while living a double life trying to maintain my dignity. Its tough when people would rather back pedal on the conversation when the very subject of what I live with (my chronic pelvic pain) comes up its daily not once in a while, much against popular normality’s (nothing about my life is the norm) I find rather than embrace this is my reality, or the least consider my journey Im on, the high points or the lows.
It is my mission to support other pelvic pain warriors because we all face the challenges of living with chronic pelvic pain through conditions/illness.
Masking your pain is kind of like an external identity that you assume in order to fit in or protect yourself… protect your peace and possibly your pride.. from the pain or trauma you endure daily.
Your mask is not a reflection of your authentic internal self, but a construct that you use in order to be accepted and secure, sadly what we feel physically and how we deal with it mentally is mostly in silence masking this from the world sadly many women live with this truth we don’t want our family to see us in pain daily or monthly on our cycle we hide our pain the tears the suffering to fit in.
Thank you for joining me today for episode two Living a double life with chronic pelvic pain taking off that mask we wear and authentically being who you are living with debilitating chronic pelvic pain.
Does anyone ever know the full extent of what living with chronic pelvic pain feels like?
It feels invalidated, it feels like a burden something we have adapted to hide, it feels like it knocks you for a six, it feels like burning, electric shocks, constant dull frustrating aching in muscles and joints.. it can be severe to the point you are left debilitated I go through this often, when its bad all the while walking around masking my truth from the world around me everyday like an actress giving my best performance to the same people everyday all the while struggling internally hiding the pain the tears that want to flow the words you truly want to speak your voice gets lost in hiding your truth to feel accepted. Feeling under supported even being asked how my situation is going is seldom. I have to deal with this overwhelming energy consuming monster mostly alone.
But wait if you do feel like this or you experience similar symptoms like I do… you dont need to hide your voice or your truth this isnt who you want to be right now this isnt what you want to live like, but if there is anything I have learnt is it is worse to hold in.
When I tell people about a bad day, by chance I open up about how it truly feels it feels like I understate my situation so regularly its become a way to cope to feel normal with the pain Im in daily. Im grateful for my partner my best friend he has seen everything me at my best pain free, well mostly as I had adenomyosis before my third child but thought my extreme period pain was normal I wasnt aware till I had my third baby living a full active life.
The down fall from 2021 with major surgeries, procedures (as discussed in episode one) my recovery’s, my emotions my hardest days I crawled back from regularly, for me my pain can be unbearable and so it can be difficult explaining it tearing at the fabric of my universe.
When I have to see specialists it can be so devastating they can make my pain seem insignificant and my symptoms seem less than what they truly are.
Somedays I am truly divided unlike anything I have ever experience with chronic pelvic pain, because living with chronic pelvic pain is truly unrelenting for those who don’t want to embrace what I deal with it can make it so much tougher, its been there for a longtime now and there are situations where I have to mask my pain at school drop off and pick up out with friends, family, at the kids appointments or just living daily life in general.
Its tiring…
Most of the time Im optimistic happy and friendly my pain never stopped me from being all of those things creative, enthusiastic about my small business, study and being a great mother and friend. I feel a loss to that part of myself that suffers those distinguishable days of severe pain.. wild unruly pain pedendal nueralgia can inflict.
“She will always rise up again she will be okay one day and pain free”
When someone asks how I am .. I am honestly stunned at the surface level conversation, Im great, fine… busy busy. Normally the response I give, we get so good at hiding our pain with limited responses so someone else doesnt have to put themselves out discussing the complexity of the pain/symptoms woman endure daily with pelvic pain.
But truly if I did answer I could run off a list
Nausea, high levels of pain, fatigue, brain fog, difficulty getting my shit together. Horrid inflammation which actually really hurts! My monthly cycle isn’t the normal, stress living in fear of my own body and what it might do today is the hardest feeling to express and takes an immense toll every day . Silently asking myself all the time things like
Am I a burden
People must think I’m weak or lesser
What did I do to deserve this pain?
How do I explain this its to complex
Will this end
When can I be myself again and breath
Will I ever just feel normal again.
There are so many things about puedendal neuralgia and other conditions like endometriosis that affect me everyday in some way or another.
Not only are women with pelvic pain up against the chronic pain & symptoms, exhaustion from experiencing them and stress from their impact on our lives; but we also have to find the strength to advocate for ourselves far more than we ever imagined we would have too and navigate specialists, doctors, surgery’s and procedures.
It’s not fair how strong we have to be when we shouldn’t have too.
The biggest thing l’ve noticed is how much of a fight I have on my hands every time I turn to our medical system, it breaks my heart because there is such a huge lack of understanding and willingness to accept I have this invisible pain that truly exists theres a lack of attention on how we feel what we feel inside our own bodys.
It definitely is about facing your fears and speaking up and taking on an unwanted challenge an unwanted diagnosis and unwanted pain the pain that exists in our body’s we did not ask for.
Thats where removing the mask leaves us feeling vulnerable, being vunerable can feel like weakness but it isnt its the strength to face your chronic illness head on and express the best you possibly can what you have suppressed so well hidden underneath a smile to feel normal to feel like everyone else.
This is why you shouldn’t judge a person’s physical or mental health on how they appear from the outside. You have no idea what someone is masking to bring the illusion forward of glowing health.
As someone who lives with chronic pelvic pain like illness, it often feels like I live two completely different lives, I wake up in pain everyday but l actively get up everyday to get my kids ready lunches and breakfast sorted making beds, having a shower and put my makeup on do my hair and get dressed and organise myself routinely everyday. I study part time for my diploma in counselling, Im an artist and create for my small business and the rest.
Routine is my saviour it keeps me focused when Im at my worst. Plus I don’t just have myself to think about my boys are my world their happiness is my happiness so I honestly have to pull myself together even when I don’t want to move at all because of my chronic pelvic pain.
Others don’t see a woman who has woke up in unruly pain thats my morning every morning, I feel nauseated/fatigued. I am completely couch bound for an hour to an hour and a half before I can even start most days, sitting with my morning coffee waiting with my tens machine on full blast pelvically during the mornings trying to survive this morning to get to the next thing organising three young boys. That’s where the term ‘chronic pelvic pain’ comes into play – sometimes I can, sometimes I really can’t but I can be in tears also pushing myself through pain and that takes strength.
Im on pain medication it helps but I never saw it as longterm but I am on it longterm till something works few procedures have worked they only worked short term out of the many I have tried reducing my pain but never completely, as I wait for pain relief to kick in within an hour so I can do things normally not discounting sometimes I have to do the routine things while in a-lot of pain too I dont always have the luxury of waiting for pain releif to reduce my symptoms either.
It’s so important to be open minded and supportive, showing empathy and learning how someone’s chronic illness can affect their life and how they have to adapt because of it. Truly making life feel less difficult for them even in the smallest way. Quit judging your friend or family member based on your own opinion just ask for the truth and listen to what they have to say acceptingly and willingly thats what a good person would do.
Accepting your friends or family members situation of chronic illness/pain will make it easier for them to take the mask off to avoid pretence or limited interactions, having to act like everything’s okay when it clearly is not most of the time it can be exhausting trying to hide all the time it makes you want to yell out does anyone see me?
There is not enough awareness of how well we mask pain living that double life, Im sharing my story because if I’d have seen or even heard content like this when I was dealing with these horrible symptoms years ago, with no clue what was happening to me, then I would have felt seen and much less alone and isolated.
So if I can make even one person feel understood or there daily struggle recognised it’s worth being this vulnerable with you.
I have difficult days and weeks regularly which can feel isolating.
l’m sending love to anyone else who is struggling today! Your worth the fight, your worth the love and kindness you need on days where your barely surviving your pain. Your pain is real and good days are coming you are important and your feelings are valid don’t ever understate what you’re dealing with to fit in.
Unveiling the Mask we wear, where do we begin?
I believe with small changes we can live life without wearing the mask we use to
Live Authentically with Chronic pelvic Pain
Living with chronic pelvic pain does leave us facing unforeseen challenges every day so much more than the norm. If you’ve been struggling with chronic pelvic pain conditions, it’s understandable that you might feel like you can’t truly be yourself and this is the reality we deal with
It may seem like you have to figure it all out before you can truly live your life and be who you are.
Alternatively, you might feel like you have no choice but to give up on living authentically or building a life you truly love and deserve because there is no true end for your chronic pelvic pain in the unforeseeable future.
As a fighter of this invisible pain for years i can honestly say it’s the small things that keep the fire or passion alive for living my life and reaching for my goals pushing forward for my children and my partner they are the reason I can never give up trying ever.
having a name to the pain or a diagnosis some small hope or faith in even one specialist who wants change your situation can move mountians, having a handle on what Im dealing with can give me the strength to innovate change in myself to continue pursuing my goals and what makes me me!
Often, you feel as though you’re wearing a mask that creates a barrier between yourself and the wider world
A shift in perspective can make a world of difference I have a positive attitude and I do have a fighting spirit even with days where my world crumbles and it feels mostly negative and Im to fatigued/sickly to function normally.
Never give up hope..
I wanted to share some techniques you can implement living an authentic life despite chronic pelvic pain.
Letting Go of Shame and guilt
Shame guilt or embarrassment is real dealing with what you feel with pain, letting go of shame around chronic pelvic pain is so important and will give you your power back. Also not allowing the guilt of something you cant control take over you by doing everything you can to fight back and take that power back
You might feel like you should be “pushing” yourself harder.
I understand this feeling more than anybody when it comes to pain relief. It’s required or I would be in severe pain and that’s the truth but neuralgia isn’t something you stuff around with it is painful and you’re not given the right type of care or diagnosis it can leave you in debilitating severe pain it hieghtens everything Im sensitive to my body and how it feels I know my body well . I have advocated for myself time and time again pushing for epidural blocks getting different treatments to figure out what can reduce my pain so I can reduce my pain relief. The shame and guilt around my pain relief and asking for it every month makes me feel so belittled because the same people that are giving me this medication (because they know I need it) are the same people that tell me I should stop taking it and reduce it This is where I tell myself that I am doing everything I can and I will never be ashamed as it is taken me advocating for myself to get the healthcare the diagnosis the management of my chronic pain and my pudendal neuralgia under control and I’ve been told by Pain specialist That they believe in me when the time is right that I will reduce my medication that I take for pain and that is all the validation that I need because it takes one person to believe in you and your situation and your unseen to the naked eye pelvic pain to give you the confidence to overcome All other ridicule and criticism.
You may be tired of trying to validate yourself for people who insist that your pain is all in your head.
This is definitely something that has come knocking at my door many times in the last four years. Some medical professionals lack empathy and carry this indescribable masculine energy to be correct about what they think is best, they can rear their ugly head.
You simply move forward and seek care else where till you find one who will open doors there are many out there!
Your pain is your pain. The severity of your pain. You know you don’t have to prove yourself and never be ashamed of telling anybody what you are dealing with because like other people who go through things that are hurtful painful Demoralising this is unfortunately you as well you will face these things. Put your best foot forward and never be ashamed of how you feel.
Chronic pelvic pain/illness is not a moral failing.
Unfortunately, our culture and society promote the idea that illness and weakness are personal failings that are up to us as individuals to fix on their own. This is not true.
Releasing these internal thoughts and beliefs can take time and effort.
Identify the beliefs you hold about your chronic pelvic pain that are no longer serving you. Additionally, consider whether some of these beliefs are rooted in how we are supposed to fit into society and how the structure of our society doesn’t fit into your reality the truth of what your dealing with daily.
Be Clear About Your Needs
When we ignore our own needs regarding chronic pain this is a signal to ourselves that we do not deserve to better or to be comfortable.
This can lead to low self-worth or like we are less deserving of something that may help our situation when its given. You might feel like you aren’t worthy of having your needs met.
Therefore, we don’t ask for what we need and put other things/people first instead. But when you speak up about your needs, you can influence situations and environments so that your needs are accounted for you can hear more about about advocating for yourself in Episode One written or through my podcast link below 🩷
This will allow you to function at your highest potential and that is something we should strive for to live our best life the best we can and forge a new way for ourselves continually putting our best foot forward.
Respect Your body’s Energy Levels
Maybe you’ve tried to force yourself to operate at the same productivity levels as “everybody else.” This can led to burnout and I have experienced this many times with chronic pelvic pain causing me more harm than good its been a big learning curve to listen to my body’s needs energetically. It can worsen my chronic pain symptoms in the long run. I try to Think about how I can engage in what Im doing at the time without risking burnout or increasing my pain by reducing big bursts of activity but slowly working through things at the speed in which my body’s not going to make me pay later.
This could include asking friends to visit you rather than going out, studying or working from home if you can, or giving yourself longer timelines to achieve your goals to realistically achieve things at a pace that your body can handle.
Create Comfortable surroundings and calming Environments to attune yourself to when the cards are down.
Whats your go to ?
Creating a bright and creative environment that meets your needs can make a huge difference in your quality of life and boost your energy levels. This could mean investing in comforting house decor or having tools handy to support your pain when it gets really high or mental strategies you can practise like calming music candles or furniture that supports your body to avoid discomfort.
It could be as little as adjusting the temperature or lighting in your home, or rearranging your room so that anything you need is always within easy reach. Having a nice spot to feel rested physically and mentally for small walks like your favourite park or beach a change of environment can work wonders. writing or art.. finding joy and some comfort in living a life with chronic pain you are allow happiness all the happiness in the world.
Allowing Yourself to feel happiness and excitment in achievements and small milestones everyday living Chronic pelvic Pain
You are more than your chronic pain. But when your symptoms are severe, it can be hard to remember everything else that makes you “you.” You may not feel like you have the confidence to assert yourself or find out who you are beyond your pain.
If you’re struggling to speak up about your needs or quite simply set boundaries and discover your true self by preparing yourself.
Chronic pelvic pain is idiopathic, meaning it can onset suddenly, seemingly without any warning. There are many potential sources of chronic pelvic pain – the prostate, bladder, pelvic floor muscles, bowels, pudendal nerves, the , pelvic connective tissue, scar tissue, inflammation the list is long. It is likely that it is any one of these sources that are the cause, which means there isn’t just one sole solution to ‘fixing’ pelvic pain. Thus it is referred to as a ‘syndrome’ – the definition being a condition which is characterised by a collective group of symptoms.
It isnt what I ever dreamt of living with and dream of having for the rest of my life so working on my pain and what works what doesn’t is an important part of the process.
Thank you for joining me for my second episode Living a double life with chronic pain
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..
Lets make a choice to be free of the mask and embrace who we truly are with what we endure be free to lift the mask proactively today to live life to the fullest you have got this beautiful, till the next episode
You can find my podcast here via the link below 🩷
https://embracingchronicpelvicpain
Be kind to yourself today – Cassie
Welcome Beautiful 