TRIGGER WARNING - Surgery and Period Talk
I had an experience that really mad me sad and then totally
pissed me off!
Have you ever felt invisible?
Have you ever met someone
who is REALLY REALLY nice and doesn’t want you to worry so they blow a little
smoke up your ass and on a good day you believe it and on a less good day you
ignore it and let it annoy you a little and then there are days when like it
REALLY PISSES YOU OFF….and you just want to scream FUCK YOU….Hear me don’t just
listen to me!
I don’t want to hear positivity and Pollyanna just because
you don’t want to say the negative stuff or because you don’t want me to worry. Tell me the truth and if you have some words
of wisdom, support or positivity that can help, then that’s cool.
I actually heard a great podcast this week about the damaging effects
of toxic positivity this week and it appears the universe is just making sure I
understand it sigh!
What is Toxic Positivity? It is the idea that we are only allowed
to show positive emotions. “Good Vibes
only” so we are made to feel wrong, “bad”, less than if we experience negative
emotions or have a negative thought.….don’t get me wrong, I will say it again….
everyone needs a bit of Pollyanna in their life but, there is this culture
rising that says slap a smile on it, don’t let them see you sweat, Just get
over it, Just be happy, if you stay positive you will overcome any obstacle,
you can do anything you put your mind to.
What’s the big deal Tara….The big deal is this…Toxic
positivity doesn’t allow you to feel your full spectrum of emotions, it doesn’t
allow you to process the situation with all the facts, to be authentic, tell
the truth and most importantly feel like it is okay to ASK FOR HELP!
Toxic positivity tells me life is only as good as I make it…..so
when life is not good, that is of my own making? Maybe it is, maybe I robbed a store and now
I am in jail and life sucks….but what about when I did nothing and I am in
excruciating pain and life is really sucking?
What did I do so bad that I now deserve that?
Oh Tara you don’t deserve that…..true true….but I am also
not allowed to harsh your vibe by saying it hurts….cuz good vibes only!!! And I am less than if I admit that I am not
perfect, sunshine and rainbows!
Okay I derailed here….Rant over….So what happened?
I went to my doctor (WHO IS AMAZING BTW, however he is also
an older man) for my follow up after the surgery and again he told me a more Pollyanna
version than what the young woman resident told me while I was in the hospital….So
I called him on it…and he did a bit of back pedalling and then I called him on
something else he said and he backpedalled again and then he threw some good
vibes shit at me and I got upset and told him that I am not stupid or
uneducated and that I understand what the words on the piece of paper mean and
he sort of blew me off and gave me a hug and when I said “I don’t want to be
comforted I want to be heard” he assured me he heard me and that in a year if I
was still experiencing a loss of quality of life we would look at it then.
A year is a LONG fucking time people! I had him give me a copy of the surgery
investigation notes and I set my 1 year follow up appointment and I went and
got some lunch.
So here is the truth based on what is written on my
investigation report and what the resident told me. I went in for surgery with a diagnosis of Menorrhagia (super
heavy, painful bleeding) and bilateral ovarian cysts and came out of surgery
with a postoperative diagnosis of Menorrhagia, bilateral endometriomas and
Stage 4 Severe Endometriosis (also called frozen pelvis).
So if you are imagining it here is a happy healthy uterus….
And then mine....
….my uterus has tilted forward almost laying on top of my
bladder it is at a very weird angle and my fallopian tubes reached around
behind it to give it a hug and then my ovaries, filled with so much love for my
sad little uterus, they swelled up and decided to kiss and their lips got stuck
together……then my endometriosis showed up to see what was going on and thought –
wow look at all this stuff, its so wiggly…there is too much room….lets glue it
all together!
So like a little cement truck guy it dumped out in all its tissuey
friends and it even pulled the bowel up to my ovaries and back of my uterus, completely
enrobing one of my fallopian tubes and secured all that to the side of my
uterus and pelvic wall! It’s a damn
mess!!
During the surgery they were unable to fully locate one of
the fallopian tubes as it was firmly adhered to the wall, so they clipped what they saw, removed the
other tube, they removed approximately 70%
of the endometriomas and they were able to separate the bowel from the other
organs YAY!
So what did they doctor tell me?
They got everything out and then I reminded him that it was
only around 70% of the cysts and he was like oh yeah, but it will be fine. Then when I wanted to address treatment of
the endometriosis he said I don’t have endometriosis just some old endometrial
tissue that they got rid of. But he had
literally just told me that I had endometriosis….as he had on the phone after
surgery and as did the resident who told me she was surprised I was walking
when I came to the hospital as it was one of the most severe cases she had seen
and that I had what was called Stage 4 endometriosis, that they doctor would
talk to me about therapies that would help reduce inflammation in the future. He ignored me when I brought that up but I can
clearly see on the report that the post operative diagnosis is Stage 4
Endometriosis AARRGHHH…
.
Sorry I am really frustrated…..I have advocated for years
that I didn’t think something was right. That I had a hard time with going to the
bathroom during my period especially, that I had extreme cramps during some of
my periods, that my periods were really really heavy, that I had tried
EVERYTHING to get pregnant, that I often felt “sick” just before, during and
after my period. That I had leg pain,
massive headaches, lower back pain that felt like lightning shots to my
kidneys, chronic back and neck pain.
That I have dieted hard and worked out tons and can’t seem to drop the
weight. That I was so fatigued sometimes
I could barely move my legs
They checked my thyroid about 500 times, they waved it off
as not related to my period, they told me to take drugs, they told me not to
take drugs, they gave me iron, told me to lose weight, told me to wait and see
what happens next time. If they had
listened to me they may have been able to deal with it before it got so bad. I don’t want to get all crazy on you….but
Stage 4 endometriosis can move into different places in your body...Got a cough
maybe its in your lungs….got a headache maybe it is in your brain…Kidney
hurts???....alright enough riding the crazy train.
Seriously though, I know that I am overweight and I have
struggled with that for a long time.
Have I always been perfect about eating well and moving more….no….its
very hard to stay on track when you never see progress or the scale goes in the
other direction. Just because I am
overweight though doesn’t mean I am unhealthy or that it is the cause of
EVERYTHING that is wrong with me or the world!
My weight is a convenient rug to shove everything under so that no one
else has to do the hard work. I AM NOT
FAT…..I have fat on my body.
Most of all today I am sad…Did you know my mom has though
for YEARS and YEARS that I have endometriosis?
I have been silenced for so long, not only by doctors but even by
friends (oh periods are supposed to be painful, its not that bad….This is
normal, get over it), but if it had been diagnosed earlier things may have been
different ….would I have been a mother?
I have long since accepted that being a mom is not in the cards for me….but
I still have that twinge of sadness!
I am ranting again…what I want to say is this…
NO ONE will advocate for you…..
NO ONE knows your body like you…..
Be Firm and Be Positive….
If they won’t listen….MOVE ON!!!!
SAY IT AGAIN AND AGAIN AND AGAIN until someone takes you
seriously!
Comments
Big hugs
Joy :)
Preferably one a bit younger. I know finding a GP in Vancouver is hard.