Meet Our QENDO Ambassadors: Samantha Wills
By Samantha Wills, originally published at samanthawills.com and republished here with permission
At QENDO we support anyone affected by endometriosis, adenomyosis and polycystic ovarian syndrome (PCOS). Our ambassadors are people who have been inspired by their journeys with endo, adeno or PCOS to raise awareness within their local community and beyond, supporting QENDO’s many programs and services. Samantha Wills is one of our amazing ambassadors, helping to empower women to share their story and listen to their bodies. In this blog she shares her journey to diagnosis.
When The Body Screams
NOVEMBER 2019
“We’ve found two large fibroids, each is the size of an orange.” She said to me, her tone careful and calm.
There’s something about receiving that type of information in a Doctors office that feels as if you are watching it on an Australian soap drama.
“OK,” was all I said back.
Not oh, fuck!, or holy shit, or what does that mean!? But just, OK.
The leadership role of response I would usually embody in that instant evaded me and I sat there wide eyed like a new recruit on my first day too paralyzed to ask questions, so just waiting for an adult to give me instructions.
SOMEWHERE IN THE 1990’S
Somewhere in the 90’s I absorbed the core belief that women had to make life easy for men.
Don’t be a hinderance to them….Be easy to get along with. I look back now and see an unlimited amount of resources I took this belief on from. I’m going to hazard a guess it started around c.1990 and the Sunday mornings spent listening to sermons preaching things like *Wives, submit to your own husbands, as to the Lord or **Let a woman learn quietly with all submissiveness. I do not permit a woman to teach or to exercise authority over a man; rather, she is to remain quiet. For Adam was formed first, then Eve.
Understood, nine-year-old me thought as I saw my parents, teachers and all the adults I knew nod their heads as the Pastor roared from the pulpit.
If I did what my parents, teachers and church leaders said, I was always told I was a good girl.
It was further reinforced c.1995 as my teenage girlfriend’s and I sat around reading DOLLY magazine, the articles telling us How To Be The Type Of Girl Boys Want To Date! And Lure Your Crush; Here’s How!
In 1998 a boy who I considered a friend invited me over to his house one afternoon to hang out. Sitting watching a movie, he aggressively started putting moves on and trying to unzip my jeans, shocked and embarrassed I told him I did not want him to touch me, to which he angrily replied “I knew you’d be frigid! Why’d you even come over if you were just going to waste my time?!”
*EPHESIANS 5:22 AND **1 TIMOTHY 2:11 IN CASE YOU WANTED TO READ SOME OF THE GOOD WORD YOURSELF.
2012-14
At 32, I had been on the pill for all of my adult life.
I was in a serious relationship and by late 2013 I had gotten my period only six times in the two years I had been with my boyfriend.
I had associated that me getting my period was a hinderance to my boyfriend. That it inconvenienced him.
My body had become so accustomed to fourteen years of hormones the pill provided it that when I wanted to skip my period I would just miss the sugar pills continuing on the contraceptive pills and magic! No period. My body was so used to the hormones it didn’t seem to skip a beat doing as I instructed it.
“Don’t you ever wonder why I don’t get my period?” I asked him one day.
“I did wonder that!” he replied. Just as I was about to tell him why, he smiled and added “I think it’s great!”
Good girl.
2015
When that relationship ended in 2015, I decided to give my body a break from the pill for a while. For the first few months off the pill my period continued as normal, but then one month I started to get pain I hadn’t felt before.
nurofen, nurofen, nurofen.
Month after month it gradually continued to get worse. Work was beyond busy, I was travelling like a mad person.
nurofen, nurofen, nurofen.
My career was taking off in the way I had always hoped and I didn’t want to miss any opportunity.
arrange schedule for one day a month that you simply can’t leave the house.
nurofen, nurofen.
I trawled the internet and found reasons that everything from periods can get more painful as you get older, going off the pill can cause your cycle to change to many women experience heavy cycles (… heavy compared to what?)
I found false comfort in the generic headlines and WebMD symptoms and side effects lists.
Oh, good! Its normal! I thought, accepting what I was experiencing as my new normal.
2016-2018
“I don’t have time; I’ve got too much to do”
nurofen, nurofen, nurofen, nurofen.
The pain will pass, arrange schedule for three days day a month that you simply can’t leave the house.
nurofen, nurofen, nurofen, nurofen, nurofen.
“I’ll do it once I finish the such and such project / deal / contract / collection / proposal.”⠀
nurofen, nurofen, nurofen, nurofen, nurofen, nurofen.
The pain will pass, arrange schedule for four days day a month that you simply can’t leave the house.
nurofen, nurofen, nurofen, nurofen, nurofen, nurofen.
“I’m too busy right now, I’ll deal with it later.”⠀
AUGUST 2019
I had been thinking for a while about starting the process of freezing my eggs. I had always wanted to have children, due to timing and personal circumstance it had not played out the way I thought and I’m sure you can tell from the above where the actual focused priority to fit that fell in my life.
I was based between NYC and Australia, so I made an appointment to see my GP to discuss the egg freezing process with her when I was back in Sydney.
The day of my appointment I was in such chronic pain, I was coiled up in bed, my entire body in full convulsions from the pain, the heavy bleeding now full blown hemorrhaging (and had been for over a year now) feeling as if full body organs where passing through me.
I winced throughout our appointment as she walked me through the process of egg freezing and then at the end of the session, I told her that my period had been a ‘little heavier’ than usual.
She gave me a referral for an OBGYN who I was to speak to about the egg freezing, but also suggested I make an appointment with her sooner rather than later to also discuss what she described as the abnormalities in my cycle.
And you know what I did? I took five nurofens, and the next day boarded my flight back to NYC because I had an important work meeting I just couldn’t miss.
OCTOBER 2019
The referred OBGYN Dr HaRyun Won could not have been nicer in our initial appointment; thoughtful informative and calm. I told her about the symptoms I had just come to accept as my normal over the past four years, and also the pain and immobility they were now causing me. As I listed what I was experiencing, the empathy that showed on her face was empathy I had not once shown my own body.
She gave instructions for pathology tests and some scans.
We were to meet again once she had the results.
NOVEMBER 2019
“There’s a few things we have to go through today”, Dr Won said, bringing my scans up on her screen. “Firstly, you are losing so much blood that your body is not able to keep up to replace it. You iron levels are meant to be around 200 and yours are sitting at 7. How your body has any energy at all is a miracle. We’ll get you in for an infusion and see how your body responds.”
Iron infusion. No problem. Tick.
“There is also a lot of endometriosis in your uterus as well… Now, endo is common, but I’m going to hazard a guess from these scans that yours is around stage 4, so its at a very advanced stage. But let’s come back to that in a second.”
I shifted slightly in my chair.
“We’ve found two large fibroids, each is the size of an orange.” She said to me, her tone careful and calm.
There’s something about receiving that type of information in a Doctors office that feels as if you are watching it on an Australian soap drama.
“OK,” was all I said back.
Not oh, fuck!, or holy shit, or what does that mean!? But just, OK.
The leadership role of response I would usually embody in that instant evaded me and I sat there wide eyed like a new recruit on my first day too paralyzed to ask questions, so just waiting for an adult to give me instructions.
“The fibroids are pushing against your uterus and causing it to be in a state of severe trauma, the endometriosis is further compounding this. This is going to require surgery”
I just nodded.
The egg freezing conversation would be happening another time, but she did let me know that if one day I did decide to try to fall pregnant that the aggressiveness of the fibroids and the damage they have caused, even after removal would mean that I would be unable to give birth naturally.
“OK,” I said again.
Dr Won explained that while she could make assumptions from the scan she wouldn’t know the full extent until she was able to look at it in theatre.
The rest of the appointment was spent discussing all the precautions for the surgery, the biggest one was that while keyhole surgery was the preferred option, due to the fibroids being so large they would not be able to be removed whole. Because of this the fibroids would have to be cut up in the body, then removed piece by piece. She went on to explain that there was a chance that the fibroids could contain cancerous cells which if that was the case, would release into the surrounding areas.
The other decision was that if in the surgery the endo proved to be causing danger to the bowel, would I give consent to have a Colorectal surgeon scrub in to remove the part of the bowel affected, a surgery that comes with significant additions from a colostomy to ongoing reparative bowel surgeries.
It was a lot to take in, and while a big part of me was overwhelmed at the unknowns, I think on some level a part of me was also relieved. Relieved that they had found something that was causing me so much dis-ease.
I felt my body breath out a little, a sigh that said thankyou for finally helping me.
I learnt I would have had the symptoms of it my entire adult life, however the hormones the contraceptive pill releases (plus the additional ones I was plying it with) keeps the symptoms at bay, the pill acts as a band aid to what it going on underneath. So when I made the decision to go off the pill for a while my body took the opportunity to quickly show me what I had been masking. But instead of listening to my body and caring for her, I ignored it.
In my long held (and very messed up) belief of trying to do everything to not be a hindrance, I became angry that my body was hindering me and instead, just started to accept the pain and symptoms as my normality.
Writing this hurts every part of my heart.
The core belief system that I’ve carried for so long (among many) and the constant battle of it Vs your true self that is trying to shed it, is tormenting and exhausting. There is much to undo.
The vile and horrible way I have spoken to and treated my body, ignoring her when she was trying to get my attention for so long, and when she was screaming out in pain instead of caring her, I just tried to continually numb her. Completely ignoring her as she screamed out for help.
JANUARY 2020
On a hot summer Tuesday afternoon tears streamed down my face as I was wheeled into the operating theatre at Randwick’s Prince of Wales private.
Of course I got my period the day before the surgery and as they transferred me onto the operating table, a pool of blood soaked through my surgical gown. My body was crying also.
“I’m so sorry,” I said through tears. I was so embarrassed of the blood that was everywhere. I was scared at what they were going to find when they opened me up and if I would wake up with part of my bowel missing…and I was ashamed. Ashamed and angry at myself that I had prioritized everything else over this for so many years.
Dr Won was the lead surgeon of an all female team and as I lay there on a cold operating table in a hospital gown, hair net, compression socks and tears streaming down my face she took my hand and said in the most beautiful, calm and reassuring tone “Samantha, we’re going to make this better”, and squeezed my hand tight.
Unable to speak I just cried harder, as I squeeze her hand in return.
Then it was time to go to sleep.
“We’re going to take great care of you, Samantha” Dr Won said.
Laying there, the surgical lights bright above me as the anaesthetist carefully put an apparatus over my mouth.
And then, the most beautiful thing happened.
Every woman in that operating theatre came and stood around me and all leant down and whispered the same to me.
We’re going to take great care of you, Samantha
We’re going to take great care of you, Samantha
We’re going to take great care of you, Samantha……
Calmness washed over me as the women surround me, I felt held by all their calm and generous energy, care and intention.
And I closed my eyes, knowing I was exactly where I was meant to be.
The surgery was meant to take three hours, but five hours later I was wheeled out into recovery. I don’t remember much of what happened that evening, but I was assured it all went well.
The following morning - and once the Ketamine trip had worn off - Dr Won was at my bedside and explained the surgery had indeed gone well and that the additional two hours we were in theatre for came about because the endometriosis was chronic stage 4, having attached itself throughout my uterus and bowel. ‘Riddled with it’ was the term she used. It was like ten years of barnacle build up that needed removing, cleaning, scraping and extracting, but she assured me it was worth it. The fibroids were successfully removed (via keyhole) and all endo was able to be separated from the bowel without the need for bowel surgery.
While I felt that all my internal organs had had a kebab skewer put through them, I also pictured them down there looking around at each other and being able to breath for the first time in more than ten years, shocked and grateful at their new found life of not having to be covered in layers and layers of barnacles and soot.
I felt grateful.
The day after I was discharged, I received the results that the fibroids tested benign, and I finally felt that now I am starting a new opportunity of health and healing. Physically as my wounds heal, and emotionally as I vow to also start to remove the long held beliefs that have led to me disrespecting my body this way. Both experiences seem reflective of the other.
I recently shared a post on Instagram and when I was writing it, I purposefully didn’t make it specific to my medical situation, because it wasn’t about the actual procedure, it was about the responsibility of listening to what our bodies are trying to tell us.
But my long held belief is steadfast in the importance of storytelling, predominantly because it is in stories that things can be made sense of, it is in stories that we see parts of ourselves. So if by sharing this story allows even one woman to not feeling alone in her journey or to pick up the phone and make an appointment then that gives me purpose in sharing. That’s important to me.
At the very least my hope is that all who read this (including me!) start to listen to our body a little more. Because it is always trying to talk to us, always letting us know what it needs, because while the mind can take us on tangents and down rabbit holes, the body never lies to us.
The body always knows.
This journey has given me a whole new appreciation for my body and all that she does for me. I am definitely going to start listening to her a whole lot more, using better and kinder words when describing her, and overall just being much more grateful for her.
Two quick things before I sign off;
1. If you have something your body has been niggling you about. No matter how insignificant it may seem, IF YOU’VE BEEN WAITING FOR A SIGN to go and get it checked out, this is it. ⠀
2. Because this blog is often visited by entrepreneurs / solopreneurs I want to make a point of saying that NOTHING, absolutely nothing in your business or career is more important than your health. NOTHING.⠀
If your body is trying to tell you something, please listen to it.
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