Invisible Road

Invisible Road A space to discuss living with Endometriosis and mental illness

03/08/2024

I’m sharing a vulnerable moment in my life with you all. I hope in some small way it goes a long way to normalising talking about mental health, struggling with anxiety and what it’s like to be just so overwhelmed your nervous system misfires. Disclaimer to say this is my experience, and everyone is different and will experience these things differently. If you can relate, and you don’t know why you’re struggling, chat to your GP or mental health care providers.

17/04/2024

I wrote a poem about how I’ve been feeling around the loss of a big part of my womanhood. It’s been emotionally taxing coming to terms with the idea that my body would never hold life again, and that part of my life is over forever.

Any way, this was cathartic, and I felt like sharing for others who may be going through something deep and painful too.

In a sterile room, I laid my fears to rest
A chapter closed, a journey put to rest
A surgeon's hand, a life forever changed
A cut was made, a choice that I embraced

Scars may fade, but the memories won't disappear
A poignant symphony, a new beginning near
I'll tell my story, with honesty and grace
In the comfort of pains that I embrace

I'm shedding the weight of what once defined me
Finding strength in the echoes of my own melody
Through the pain and the healing, I'll rise above
With resilience fuelled by my own self-belief

The whispers of doubt, they try to break me
I won't surrender, I won't let them steal my crown
In the silence of recovery, my heart finds solace
Finding beauty in stitches, an anthem of my own

I'll scream out the words, release the pent-up sorrow
Embracing vulnerability, I'll set my soul free
A song of strength and courage, this is me
I will stand up again, and adjust my crown

I'm shedding the weight of what once defined me
Finding strength in the echoes of my own melody
Through the pain and the healing, I'll rise above
With resilience fuelled by my own self-belief

So here's my song, a testimonial to the trail I've tread
A story of empowerment, for all who've bled
In the style of my own making, I find my voice
A ballad of healing, a testament of choice

I’m just shy of 3 weeks post op after excision of grade 4 endo, hysterectomy and bowel resection. I’m 38, and have had e...
30/03/2024

I’m just shy of 3 weeks post op after excision of grade 4 endo, hysterectomy and bowel resection.
I’m 38, and have had excruciating pain since my early teens.
I’ve undergone so many unnecessary procedures and surgeries.
I’ve been told it was constipation, anxiety, heavy periods that are just my lot in life.
I lived with massive blood loss, living on incredibly strong pain killers, I had to quit my job, and I put on a stack of weight because the only exercise I was allowed to do was walk in the pool. To name a few of the impacts.

It wasn’t until I was in my early 30’s that I went to a different hospital after complaining for over a year of terrible pelvic pain. The new hospital and surgeon discovered I had appendiceal cancer, severe endometriosis and cystic ovaries.
The previous hospital (and one particular surgeon) had done approximately 4 unnecessary colonoscopies, as he was adamant I had bowel issues. Completely ignoring my ENORMOUS appendix. Nearly killing me. Like quite literally I was days away from the point of no return when the surgeon at the other hospital heard me and acted on what I was describing and my pain.

I will forever be grateful, and hold on to the life that I was gifted.
BUT I am SO MAD at every single doctor for dismissing me and inflicting medical abuse.

The result of ignoring me was nearly dying and becoming infertile due to the damage caused by leaving the endo untreated for so long.

This all needs to change. The medical system needs to recognise that pelvic pain is real. It is NOT normal. It is not ok to tell a pre teen that she is too young to have pelvic disease, and it must be constipation.
Endometriosis has been found on EVERY organ in the body. Some people get nose bleeds when they have a period.
WHY DO WE STILL NEED TO FIGHT FOR A DIAGNOSIS!? Why are the surgery wait lists 1-2 years long for this debilitating disease, because it’s still classed as ‘elective’!?!?!
What is going to need to happen to get the ball rolling on changes that need to happen?



I’ve had a rough couple of days. It’s when I would have normally begun my cycle, and what’s left of the endometrial tiss...
25/03/2024

I’ve had a rough couple of days.
It’s when I would have normally begun my cycle, and what’s left of the endometrial tissues they couldn’t remove is flaring.
I was worried about post op complications or infection so ended up in emergency getting bloods, urine and scans done - which all showed up unremarkable, a huge relief!

It really, really is disappointing that I’ll have flares still, but comforted in the knowledge that it’s nothing in comparison to what I was living with before.

And to top it off, I have a terrible cold 😩😩 it’s so bad and there’s so much snot.

Here are a few things that have kept me sane and happy -
Ice packs and heat packs alternating
Puppy cuddles
My daughter learning to make bread which is delicious!
Puppies in Oodies! 😍
And ADORABLE 2/3 week old kittens

I guess we learn to just keep on trucking on, right. Endometriosis is a b*tch.

Post surgery already feels like I’ve got a more fulfilling life ♥️It’s strange to have had my uterus removed, bowel surg...
22/03/2024

Post surgery already feels like I’ve got a more fulfilling life ♥️
It’s strange to have had my uterus removed, bowel surgery, endometriosis clean out, muscles/tendons/ligaments cut and stitched back together, and I have less pain than my every day base line pre surgery 🫠🫤
It’s telling of the level of pain and discomfort we are pushing through daily as endo Warriors, that major abdominal surgery pales in comparison.

Let me encourage everyone who is suffering to push for help and advocate for yourself.
If your health care provider is not supporting you in living a better quality of life, find another who will.
Fight for your right to be heard and helped. Do not let anyone let you feel like you have to push through and take more pain killers.
They don’t know what it’s like to live like this every day. They don’t know the crippling pain and mental burden of this disease.

I’m 38 and have two kids in or near their teens. I am finished my baby bearing era.
The only way I would ever have had another baby would be through IVF and the process would be excruciating because of my pelvic diseases.
And I STILL had to push for a hysterectomy because of my age, and was asked to consider if a future partner wanted children 🤯 like I should push through life limiting pain just in case someone might like to use my uterus later.

When the surgeons saw my uterus they described it as ‘globular in appearance’ and told me there was no chance I’d ever have conceived, even through IVF, because of the damage.

I’m already so much happier in my self physically and mentally.
I can start to think about working and exercising, going out without considering if I will be able to make it home because of the pain, and spending time with my kids without them worrying.
I’m under no disillusion that this disease is gone. I know it’ll spread and I’ll need future surgery to clean it out. BUT not menstruating will mean I no longer have the excruciating week where I can’t leave my bed without sweating and panting through pain.
Now, excuse me while I celebrate having my life back!

Feeling 100x better this afternoon. Tweaked my pain meds, and added in some anti nausea meds and I’m feeling better than...
12/03/2024

Feeling 100x better this afternoon. Tweaked my pain meds, and added in some anti nausea meds and I’m feeling better than I do during an endo flare.
I’ve had a whole organ removed and the surface of my lower bowel scraped clean, vaginal incision to remove the uterus, lots of stitches - and I’m in less pain than a flare.
If that isn’t a clear indication of how much pain endo warriors live with then I don’t know what is.

Not so invisible illness today. It’s finally happened - my     of   and   I’m feeling pretty rubbish right now, but so r...
11/03/2024

Not so invisible illness today.
It’s finally happened - my of and

I’m feeling pretty rubbish right now, but so relieved I’ll be living my very best life from now on ♥️
Looking forward to bushwalking, swimming, playing with my kids and puppy, even just cleaning my house without excruciating pain.

✨✨✨ It’s life changing and improving ✨✨✨

This is my last ever period (knock on wood). My surgery was cancelled in November and I finally have a rescheduled date ...
25/02/2024

This is my last ever period (knock on wood).
My surgery was cancelled in November and I finally have a rescheduled date for March 11.
This one is killing me. It’s truly awful and I’m in so much pain.
I’m coming off a week of colitis straight in to this. My body is exhausted and in pain, so much inflammation everywhere.
Pain killers x100000, essential oils, heat packs, tens machine and herbal teas - still at an average 7/10 pain 😭

Can’t wait for this surgery and have all of this cut out of me and thrown away.

My advice, for those who care to listen. When you feel crap, depressed, sad, overwhelmed, frustrated, fed up…and so on e...
23/01/2024

My advice, for those who care to listen.
When you feel crap, depressed, sad, overwhelmed, frustrated, fed up…and so on etc and so forth - eat bacon at 11pm, drink pina colada’s from a Christmas glass, don’t wear a bra, listen to a book and DO NOTHING AT ALL. Or whatever your heart desires.

It may be the pina colada in a Christmas glass at 11pm talking, but - f #%k it and do it.

I’m so tired of trying to ‘look’ like I’ve got it all together. To look like I’m strong. Like I’m the selfless, sacrificial lamb to the alter of motherhood and adulthood.

I’m so tired.

I’m tired of feeling like I’ve cut my veins open and draining my life’s blood on to the alter in the name of sacrifice - expected of the maternal figure since the dawn of time.

I’m tired of not being ‘cool enough’. Not being skinny enough. Not having enough. Not BEING enough for the cool kids, the cool mums, for the boys, for the bosses, for me.

Maybe it’s the fact that I am turning 39! this year, facing my last year of my 30’s and that hypothetical other side of the hill I’ll soon be rolling down. But I’m just so tired. And I just don’t care any more.

I’m single. 38. Soon to have my uterus scooped out, taking away a very symbolic figure head of the mainstream view of femininity. And honestly I wouldn’t change any of these elements. Not long ago I would have balked at any one of these facts.

But you know, I think after wading through the sh*t pool of my life, of a failed marriage, 3 abusive consecutive relationships, surviving cancer that kills 87% of its victims, and having a child go through hell with BPD from the age of 10 - my lesson is to just not care about what it looks like to anyone else any more.
Don’t care what the cool kids think about what you’re wearing, that your kids don’t have the iPad - soccer boots - concert tickets - new pool etc.
I don’t care.

I do care about what brings me the little bits of joy. My cute doggo looking at me with unconditional love. My second hand but new to me 9 year old car that make a very cool noise and hen I put my foot on the accelerator. My baby girl telling me that she is so lucky to have me as her mumma, and she loves me so much it makes her cry.
I care that I have boundaries that I won’t compromise on. And once crossed, I don’t falter anymore.
I love that I take my kids to the water and watching them regulate and reset through the healing powers of the energy found in earth and water.
And I love eating bacon and drinking pina coladas on a Tuesday night at 11 pm because it brings me comfort. I love that I don’t care that I may put a few more kilos on, grow my double chin and get some pimples from it, because right now, after a really difficult and exhausting afternoon, it makes me feel so good.
It makes me feel like telling the 15 year old me to stop caring that the boy you love with all your heart, who chose your friend over you again and again, is not worthy of your love.
Telling her to stop trying so hard to make them want to be your friend, to notice you, to love you.
I want to tell her that they don’t matter. They are a tiny blip in your life. That they don’t play a part in your adult life, so please please please love yourself, find your joy and do what makes you happy, not them. Never them, because they don’t love you back as much as you love them.

So my advice - love you. Love you with the abandon of bacon on its own. Pina coladas in the Christmas glass because it’s the only clean glass you can find. Love you - because that is what matters and what will get you through.
I’m still developing this emotional muscle.

It’s hard.

And painful.

But it’s a good sort of pain.

Hey friends - Lilah needs urgent surgery tomorrow and I’m down at the  today trying to raise some extra funds. I’ve shov...
13/01/2024

Hey friends - Lilah needs urgent surgery tomorrow and I’m down at the today trying to raise some extra funds.
I’ve shoved whatever I could fit in my tiny car, and it’s all going for reduced prices for today only.

Come and see me if you’re around, or share to friends etc. it would all be very appreciated ♥️

I’m so sad. I’m so angry. I’m so frustrated. Last month was supposed to be my last ever period. Then 36 hours before my ...
04/12/2023

I’m so sad. I’m so angry. I’m so frustrated.
Last month was supposed to be my last ever period. Then 36 hours before my scheduled surgery that I’ve been waiting for 9 months - it got cancelled because bookings forgot to schedule one of the surgeons involved.
Now I’m sitting here in a world of pain, with a blender going nuts in my pelvis and spikey fire balls around my bowel. I’m about to loose so much blood that it makes me temporarily anaemic.

I wish I had the choice to get this done now. To start moving on with my life and living a more fulfilling existence. I wish I could start exercising and not cry in pain when I move in the wrong way or do too much.

I was supposed to have my surgery yesterday and begin healing to move forward with my life, to have a better quality of ...
18/11/2023

I was supposed to have my surgery yesterday and begin healing to move forward with my life, to have a better quality of life.

At 4pm on Wednesday, two days before my surgery, the admissions team rang to tell me that one of the specialists wasn’t booked in and isn’t available, and so my surgery has been cancelled and needs to be rescheduled.
I am beyond sad and disappointed. I am angry and hurt. I have deep disbelief that it could get to the last minute for them to realise they hadn’t booked in all of the surgeons needed for my major surgery.
It’s taken 9 months for them to get this sorted, when it was supposed to be done within 3 months.

But what can I do 🤷🏻‍♀️ I’m at their mercy.

I’ve taken a few days to eat bad food, wallow a bit, watch tv, cry and hug my furry babies.
And now I’m ovulating again and I will bleed again. All something I had said goodbye to with sadness but mostly relief.
Now I’m faced with dread and frustration and immense pain.
So excuse me while I wallow a little while longer over here xx

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