Categories
All Things Endo

Dr Nicholas Leyland

I first heard of Dr. Leyland through the online endometriosis community.
Prior to immersing myself in the community I was completely unaware that endometriosis surgeons/specialist existed.
To go 15 years in dealing with a disease and yet no one told me or referred me to a endometriosis surgeon seemed baffling, then when my thoracic symptoms started and I dove in deep is when I found out about all of the endo surgeons we have here in Ontario as well as others around the world.
My gynaecologist is located in Hamilton which is the same city that Dr Leyland’s office resides out of so proximity to my gynaecologist and also all of my previous surgeries had been at McMaster hospital so the familiarity was reassuring when choosing to be referred to him.
I also felt reassured that he has been an endometriosis surgeon for a significant amount of time and runs a fellowship program.
I first walked into Dr Leyland’s office Oct 16 2018 (it was my husbands birthday)
I spent the next 7 months going back and fourth between him and my thoracic surgeon and organizing a collaborative surgery.
I found Dr Leyland to be very informational and educational on all aspect of endo and management, he was very black and white and had direct answers to my direct questions. I never left the office feeling confused or leaving with more questions that I came in with.
His team of fellows were kind, compassionate and humorous on surgery day Oct 10 2019, a day that he helped change my life.
I will forever think fondly of him as he is a huge part in my journey and helping me get to the other side of this disease.

Dr Nicholas Leyland
Dr. Leyland is a nationally and internationally recognized leader in gynecological surgery and the comprehensive management of endometriosis. He has contributed academically to the advancement of women’s health in the development and the provision of the least invasive surgical options for a variety of surgical conditions.
He sits on the Gynecology Clinical Practice Committee of the Society of Obstetricians and Gynecologists of Canada as past Chair. This committee develops guidelines to set standards for the profession. He is Past President of the Canadian Society For Gynecologic Excellence. The majority of his academic career has been at the University of Toronto where he developed one of Canada’s first comprehensive fellowships in minimally invasive gynecological surgery.
Dr. Leyland took the time to complete a Masters Degree from Harvard University while working full time to develop leadership skills in medicine to advance the care for women.
He is currently The F.L. Johnson Chair and Professor of the Department of OB/GYN at McMaster University and is head of the Endometriosis Clinic based out of McMaster University Medical Centre in Hamilton, Ontario. 

I had the chance to ask him a few important questions of his thoughts and expertise around situations within endo;

What made you choose to create a career around endometriosis?
During my training and my early career it was apparent that women suffering from endometriosis were not well managed medically or surgically. In the 1990’s I travelled to work with experts around the world to develop the knowledge, skills and abilities to provide better care to women with this disease.

What is your favourite part when dealing with endometriosis, in clinic or in surgery?
When patients who has been suffering for a long period of time respond to our interventions and have improvement in their quality of life! This is very gratifying.

What is something that you wish patients knew?
Endometriosis can be effectively managed using multi-modal therapy. This includes medical, surgical and other modalities. The later may include physiotherapy, cognitive behavioural therapy and mindfulness training. This disorder requires careful assessment and the development of a lifelong plan that varies depending on the goals of the individual patient. Be this fertility, pain management or pelvic floor dysfunction.

What is something that you enjoy to do outside of surgery and the clinic?
Cycling, travel, reading. I have five children who all provide the greatest joy to me and my wife.

There hasn’t been much change in treatment, awareness, funding and education around endometriosis over the last 20 years, why do you think that is and what do you feel needs to change in order to see a larger scale of changes?
I believe that women in our society have a long way to go to achieve equality in many areas including health care. Women need to advocate for themselves and work with their care providers to achieve greater funding in research and centres of excellence for the provision of this type of care.

Over the last few years endometriosis patients seem to have taken to social media to access resources, information, community and belonging. 
Have you seen a change in patient knowledge and how does that change the dynamic in clinic appointments? 
Women have been able to access information via many channels. Unfortunately there is good and bad in this. Some information on line is inaccurate and misleading. However, the more educated women are when coming to clinical sessions the better.

I want to thank Dr Leyland for taking the time to do a short interview as well as all of his work in research, studies and advancements within endometriosis care.

Categories
My Thoughts

Social Media Is A Funny World

For the average person it doesn’t take up too much mind space, effort or conscious mind space.
Most people use this space to share videos and photos of their weekly, bi weekly and sometimes monthly milestones in life.

A place to share their kids moments, their greatest achievements or even a weekend around a campfire with friends.
you share and then think not much else of it.

For others it can create an entire different concept.
It can become a space of judgment; one of which are often put upon ourselves by our own self conscious.
A place where you start to compare yourself to others sharing all of the highlights on social media and then turning inward on self reflection as to why you’re not achieving what it seems like everyone else is.

Social media is a highlight reel.

I have gone back and fourth in sharing on a normal day, all of the non highlights.
Share the raised voices.

Share the frustrations that we all come face to face with in a day.
Share the failures.
Share the hardships.
Yet for some reason, I still haven’t.
And why?

Ive thought on the why I haven’t shared, and the honest truth at the end of the day is; I don’t want to be faced with the judgement that I would than be faced with.
No one wants to share the hardships and then have to answer to or be judge by the hardships you have endured.

When hardships happen, whether its in dealing with your own self issues, your children’s issues or your marital issues, its hard enough to step back from the arguments within the day and beat yourself down, let alone deal with the scrutiny of others.

Life as we all know it right now is hard.
It’s hard on so many levels.

We are judging our selves, we are beating ourselves down and thinking we are not taking this time to create, be and do all the things we have set out to do, be and become.

Some of us may be rethinking our careers, our marriages, our parenting style and friendships.

Thats all heavy stuff, thats all a lot to decipher through while dealing with a pandemic and being left essential to our own devices to spend time within ourselves, which to be honest we have never had that time to do before, at least for an extended period of time.

All I have to say is;

Be kind to yourself.
Be patient with yourself.
Be patient with those around you.
Give yourself the permission to break.
Break from social media.
Break from friendships.
Break from the overwhelming feeling of needing to be “on point”.

Take a deep breath, and know at the end of the day, it will all work out, it will be the way that it is fully intended to be.
For we are apart of the universe but the universe is far stronger than anything we can control.

Categories
My Thoughts Purpose

Know Your Tribe

Know your tribe.

In the early stages of building this platform, creating my blog and trying to figure out where I stood and what I had to offer the digital social media world, every single webinar, blog post and influencer I talked to all talked about the same thing.

Know your tribe.

I didn’t fully understand this….
What tribe? What do you mean? I have my family, I have my friends and I have my endo warriors and those are all FREAKING AMAZING PEOPLE in my life, but surely there aren’t thousands upon thousands of family, friends and warriors all out there on social media.

Sure we take up a huge percentage but not everyone is on social media.
1/2 my family doesn’t even have social media and they are my biggest supporters, so how do I find more?
Do I make my family, friends and neighbours create accounts and follow my blog?

Do I knock on my neighbours doors and ask them to sign up for my monthly email stating there’s a new blog post up?

How do I find a larger tribe?

I struggled with this for over a year, I won’t lie.
I constantly looked up to advocates, non profits, influencers and companies with large followings and engagements to see what pages I could take out of their books and how they made it happen.

It doesn’t happen over night, that’s for darn sure.
Being a person who wants instant gratification and perfection was something really hard to deal with, but at the same time if it all came easy than you wouldn’t appreciate it as much.

There are times, MANY TIMES when I am in the space and the rough days can sometimes turn into rough weeks, and I sit back and think “Do I really want to continue to do this?” “Do I really want to constantly put myself out there to be vulnerable to be critiqued and criticized?”

And that’s when I realize where my tribe comes in.

Find your tribe!

Find the people who support you and love you for who you are.
Who don’t judge you because you let your kids eat chocolate after dinner.

Who don’t talk badly about you because of the way you wear your hair or makeup.
Who don’t have anything but positive things to think about when they think of your name.

Who are truly there for you when you need it most.

And I have found that my tribe has shown up in the times I’ve needed them most, without them actually realizing it.

I find the universe works in mysterious ways…I will be having a really rough day or week or sometimes lets be honest it can turn into a month (thanks covid)
And I sit and self doubt, internalize, over think and think about how none of what I have to say is anything decent and to be frank no one really cares.

Then a UPS lady drops a package off at my front door and there is a gift in a box for myself or my family, from one of my tribe members.

Or

I get a heart felt letter or post card in the mail on a random Wednesday saying they are always there for me whenever I need it and they are thinking of me, from one of my tribe members.

Or

I get emails, texts or dm’s asking how my day or week is going and if there is anything that they can do for me or simply checking in and sending me love to let me know they are thinking of me, from my tribe members.

Find your tribe.

I get it now, whole heartedly I get it!
I understand it!
It’s about having people care, truly whole heartedly, genuinely care for you, your wellbeing and your family.

Never in my life would I ever think that I would have met, made the connections or the best friends that I have today, through social media.

But honestly, they are some of the best.

I am so beyond thankful and appreciative of absolutely everything my tribe has given me.
I can’t thank each and every one of you enough,
I am sending you love, light and positivity.

Categories
Vegan Recipes

Blueberry Vegan French Toast

Easter morning came, we spent the morning search for easter eggs and opening our new spring time toys.
We than headed into the kitchen to start making our brunch!

The biggest hit out of our brunch was the blueberry vegan french toast, the best part is it was a simple recipe and easy for the kids to help me make it.
I personally don’t like recipes that require a lot of ingredients, I enjoy baking and cooking with things I often have already in the cupboard.

What you’ll need:
-1 tsp Flax Seed (I used flaxseed meal)
-1 1/2 tsp Vanilla
-1 tsp Cinnamon
-1/2 tsp Baking Powder
-1/4 Cup Corn Starch
-1 Cup Dairy Free Milk
-1 tbsp of Maple Syrup

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Recipe:
Add in a large mixing bowl all ingredients listed above and whisk together, this recipe made enough for 8 slices of french toast, if you need to make a larger batch double the recipe.

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Coat bread of choice (I used texas style toast) in batter, and place on a medium/large frying pan heated with oil over medium heat.
Fry each side until golden brown,  roughly 2-3 minutes each side.

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I topped ours with blueberries, coconut dairy free whipped cream and maple syrup.

I hope you enjoy this recipe as much as my family and I did, it will definitely be a regular breakfast option in our house.

 

Categories
All Things Endo

The Twilight Zone

 

Starting this off by saying it’s a strange time would just be typical, but let’s be honest, its a really strange time. 

It’s like this twilight world we are living in and no one knows what to do about it all, except for talking about how strange it all is. 

Endometriosis advocacy and awareness has taken a huge back seat, in my world as well as the online community.
I think one of the hardest issues with all of it is, we are all at a standstill with covid-19 and the medical community.

We can’t see doctors.

Appointments have been cancelled.

Consults have been cancelled.

Imaging has been cancelled.

Surgeries have been cancelled. 

And all of that is Absolutley heart breaking!

When excision surgeries in Canada started to be cancelled, I cried.

My heart literally broke, for all of those people who had waited sooo long for surgery, now to be disappointed. 

See in Canada, our wait times are LOOONG!! And I don’t mean like 3-6 months long, I am talking about, by the time a person has their gynaecologist until they are sent to an excision surgeon and a surgery date is here, you are talking anywhere from 12-32 months. 

When I was in the 2.5 year process of getting myself on an OR table with my surgeons, each appointment gave me a sense of relief and reinstalled my hope.
Even though, at those consultations and discussions of appointments nothing physically happened, it was knowing in my mind that I was one step closer.
We have made the leap from one stone to the next, and that light at the end of the tunnel was a little closer.

It gives you the strength and courage to know you can fight a little longer, you just have to make it to X date.
I would give myself pep talks when I was in my bad flares.

“Alex we can do this, we have won 100% of our flares thus far, we only have 6 more flares to go until surgery!”

I would be highly symptomatic every day, but I would flare twice a month for about 3-5 days at a time.
I tracked it so I knew when they were coming (ovulation and cycle)
I counted how many flares I was going to go through until my surgery date, and to have gotten through all of that with the surgery date near, to have that cancelled would have been beyond devastating. 

Chronic illness doesn’t stop, It doesn’t shut down and it doesn’t go away because of a pandemic, yet all of our resources have. 

I was talking to a friend yesterday and she was frustrated, as she is in severe amounts of pain and her daily life has come to a complete halt.
And by complete halt I mean she is in her bed and cannot move or function 98% of her day, and there’s nothing that will help. 

She needs a nerve block injection and that’s been cancelled.
She needs surgery, and that’s been cancelled.
She needs to see 3 specialist, and those have all been cancelled.
And she is far from the only one in this position, along with the uncertainty of when this is all going to resolve itself. 
She said it is life over death right now, and quality of life for those with chronic pain or illness is no longer a concern. 

I understand the pandemic fully, and I am not down playing all of it.

But when dealing with a disease that is hardly believed, taken seriously, treatments that are actually working or having the support you need all now becomes null and void, what are we left to do? 

We have to do what we do every day;

Band together.
Unconditionally support each other.
Offer advice and guidance as best we can during this time.
Show unity.
Share love.

We will get through this, and we will come out more humbled and understanding after it all.
But that doesn’t make it any less difficult, exhausting, upsetting or frustrating.
We can’t do this alone.
We can’t do this being against one another.
We need to gather all of our power, positivity and strength to help one another. 

 

Categories
My Thoughts

Covid19

 

It’s a strange time in the world right now.
No one seems to know what think, how to feel, what to do or more importantly what not to do.

We all seem to be grasping for answers, stability and structure. Yet all we are given at this moment is more questions than answers, more instability and an increase is disfunction.
How do you feel during all of these things?
What are you supposed to do during these crazy times?

When we now have the time, everyone is talking about being forced into this creative time. Forced into spending time with your family and being forced to do all the things you haven’t had the time for before.
But where is the motivation? Where is the passion or purpose around any of when there is this sense of doom that is hovering over the globe right now?

Seems like a pull of two worlds.
The world is ending, This is really bad, we need to fix this and this is awful.
VS.
Make the most of your time, enjoy the time alone, spend this time doing things you love.

I personally have very little enthusiasm, excitement, drive or energy for any of it.
Frig its taken me 2 weeks of this to sit down and actual write out a blog post.

Uncertain times calls or uncertain behaviours.

Stay Safe.
Stay Well.
Stay Healthy.
Stay Home.

Categories
All Things Endo

Life Post Excision

I know it’s been a while since I have been on here, and I sincerely apologize for that!!

However I have been out living life to its fullest!!!
After spending over a year and a half dictated by my body of what I could and couldn’t do was exhausting.
So the fact that I now get to dictate what my body does has been a literal breath of fresh air.

I can’t even begin to describe how I feel.
I am officially at a point where I emotionally can’t watch my past videos of me talking about anything for that matter, while I suffered.
Watching my physical self suffer while being on the other side of this disease is heart breaking.

I watch them back and think to myself, how did I do it? how did I even manage? I physically look sick, my eyes have no light, my skin is grey, I have nothing in me let alone a spark.
I can barely breathe and take a breath. I can barley manage to get out a sentence without having to stop and grasp for air.

Its such a difference now, that people make comment on it.
Through voice note messaging on instagram its highly apparent and even in personal face to face conversations.
I can TALK!!!!!
Sentences upon sentences without having to stop, without grasping for air, without pain in my chest and without the need to cut it short.

There is no better treatment then excision, there isn’t.
It’s Science!

Being chemically suppressed into menopause gave me relief, barley but it gave me relief.
You cant even compare the two… it would be like comparing swimming to snowboarding.

I am patient.
I am fun.
I am enjoying every moment with my family.
I am often still found in my bathtub, but because I want to be not because I have to be.

Things have changed in my life, my way of life has significantly changed for the better.
Trying to navigate how to proceed with this new found journey is a learning experience thats for sure, but I wouldn’t trade it for the world.

Push for excision, find a surgeon who is qualified.
an OB/Gyn is not!!
If your surgeon is telling you they can treat your endometriosis but you find pregnant women in the waiting room, please find another surgeon!

The Endo Network of Canada is a great source for Canadians surgeons.
Nancy’s nook on facebook is a great source for international surgeons.

Receiving proper care is monumental and living in 2020 I never thought I would say those words.

Categories
Surgery

Surgery

 

The day had come, the day was here that I fought so tirelessly to get to.

I was finally having my dual endometriosis excision surgery, I was having 2 surgeries with 2 surgeons in one operation.

I got to the hospital at 6am the mooning of surgery, surgery was at 8am and I had to be there 2 hours prior for patient check in and pre op.
This meant I was up at 4am to shower and make sure all my things were organized, and then leave my house at 5am since the hospital is an hour away.

We got to the hospital and I registered myself, which after that I was sent to pre op.
I got gowned up, given some pre surgery pain meds (apparently it helps with the pain after) and I got beautiful knee high socks on!!

Once all of that was done and my patient intake information was inputted I got escorted to THE BEST CHAIR IN THE WORLD!!!!
They had these new paper gowns that you wear underneath your hospital robe, she told me while I was changing that they are heated gowns and I didn’t understand since they were paper. OOO MMM GGG!!!!
When I got to my chair she pulls out a tube from a machine attached to the wall called “The Bear Hugger”.
It is essentially a hair dryer connected into your paper gown and on the inside of your gown these pockets fill with warm air, IT WAS GLORIOUS!!! and I want one in my house!!!

After that I got my IV in, and we were well on our way with an hour left until surgery.
Waiting there with my husband, my teams started to trickle in to see me.

First, Anesthesiology.
They came and opened my file, made sure everything was in order. We talked about what was going to happen and we discussed a thoracic epidural to be put in while I am in the OR before surgery.
Everything was good to go and they left.

Second, Endometriosis Excision.
I had a Dr and 2 fellows and half way through our briefing my surgeon popped in. We talked about what was going to happen during surgery, I asked a few technical questions and then off they left.

Third, Thoracic Surgeon.
He came in and spoke with us, he made it seem like it was going to be the easiest thing to do ever hahaha!!
We’re gonna go in look around take anything out and you’re done, just like that.
We decided to forgo the thoracic epidural.
My thoracic surgeon advised me that its my choice either way but in his opinion he didn’t think I would need it, so I took his advice.

I walked into the OR and there had to have been about 15-25 people roughly.
I went and sat on the OR table while I waited for all the surgeons of my teams to arrive, once they did than I laid down as they de briefed on what was going to happen during surgery and at this time they started to sedate me.

My endo surgeon was showing me photos of his dogs and his doctor was telling me think about a sandy beach with a margarita.
I remember thinking to myself, when I fall asleep I feel like everything is going to be chaos and it will be loud and lots of movements. Who knows, it may be true but I was happy sleeping during all of it.

They put the oxygen mask on me, and before I knew it I was being woken up in recovery.

Categories
All Things Endo

Advocating For Yourself

First off let me start this by saying that I LOVE MY MUG!!!
I have been wanting this mug since the day I started my Rea Dunn collection, however it was only available in the states.
One of my best friends got it for me for my birthday and I am in love!!

Now for the reason why I am here;

Let’s talk about advocating for ourselves for a minute. ⁣

We advocate so hard for ourselves for proper surgical treatment, for proper care and guidance, but it seems that at the moment we get that surgery date in our calendar our self advocating selves quiet down. ⁣

And now most of you are probably thinking, obviously we stop fighting for what we want because we have obtained what we came here to do and get. ⁣
Would you think I am crazy if I said you’re wrong? ⁣

We have so much knowledge in regards to the gold standard of care.⁣
We have so much knowledge on excision vs ablation.⁣
We have so much knowledge on all the possible medications our doctors can prescribe to us.⁣

We have limited information as to what ACTUALLY happens during surgery.⁣
What tools are being used.⁣
What is going to happen in pathology to find the proper answers.⁣

There is so much more to the puzzle.⁣

With the help, support and guidance from a fellow science lover, Kate over @endogirlsblog helped me continue my advocacy last night. ⁣

After discussing An article shared in the extra pelvic Facebook page about the pathological findings of thoracic endometriosis, it got me thinking. ⁣

So naturally, as I do…I emailed the head of the pathology department at the hospital that I am having my surgery at on Thursday.⁣

I asked the questions that I wanted the answers to. ⁣
I asked the criteria of process for getting a positive diagnosis on thoracic endometriosis as there are 3 factors included. ⁣

Thoracic endometriosis has been known to be difficult to get a positive diagnosis on, in speaking with fellow thoracic patients as well as literature I have read, it’s not as easy to diagnose as pelvic endometriosis. ⁣

This surgery has been a long time coming, and a pathology report of “inconclusive” just won’t sit well with me. ⁣

So I am here to tell you to advocate for the answers you want even after surgery.⁣
Advocate to press for more answers if you’re unsure or unclear.⁣
Ask the questions, and if someone doesn’t have the answer than find someone who does. ⁣

No one will fight for your health except your self. ⁣
Knowledge is power my friends.⁣

Categories
Surgery

How I Really Feel

 

I have been asked a lot this last week “how are you feeling about your surgery?”

And honestly it’s such a loaded question I don’t even know where to begin.
Even sitting down to write out this blog post about it has me feeling over whelmed. 

Its as if my mind is running a mile a minute and my fingers grazing along the keyboard just can’t keep up with the over whelming merry go round that my brain is currently in.

I am keeping myself beyond busy, like BUSY!!!
mentally, emotionally and physically.

My job is busy as always, I am keeping my free times filled with endo advocacy projects as well as focusing on future projects as well. 

I guess it’s a default I am putting my mind into so that I don’t really sit back and think about the surgery itself. 

One thing my husband said to me yesterday was “I am feeling okay about it because its all done laparoscopically, they don’t have to open you fully up” 

I laughed internally while I smirked at him. I wasn’t going to be the one who tells him there is still risk with any surgery no matter how big or small.

If that is what is keeping his mind at ease that i’ll just let him be with it. 

But how do I feel about it, and I am not talking about how I feel about it in a basic sense but like how do I REALLY FEEEEEL about it…that’s been the hard question to answer lately.

I am nervous.

I am excited.

I am petrified.

I am anxious.

I am relieved.

I am happy.

I am smiling while I am also ready to vomit.

That sums it up in a nutshell.
It’s not confusing at all is it haha!

Any surgery is nerve wracking lets be honest. No one actually ENJOYS surgery, but unfortunately its inevitable. 

I am nervous over the fact that its going to be in and around 6-8 hours. My longest surgery to date was 3 years ago and that was my hysterectomy coming in at just over 3 hours.
This one is over double that time frame, not that I am going to notice the time difference but its still something to think about.

I am excited to have this done, I am excited to have answers, I am excited to get off of orilissa. I am excited to gain some relief and to hopefully get back to doing the things that this disease has ripped from me. 

I am petrified over the fact that someone is going into my lung cavity, it just gives me the jitters when I sit back and think about it. 

I am anxious of the anxiety I will feel while waiting the 2 hours as I prep for surgery. I remember it so well the last 3 surgeries I have had, and it has to be the worst feeling in the world. The pit of your stomach is turning. Your hands are freezing. You have a horrible taste in your mouth and you are utterly exhausted. 

I am relieved it’s happening at the hospital that it is happening at. Its one of the top hospitals in Ontario, I always joke and say when something goes really wrong its the hospital you get sent to, since I am already there its going to be okay! (for my fellow Ontario’s I am having surgery at McMaster in Hamilton)

I am happy that I am truly in amazing hands!
I couldn’t ask for better surgeons!
I have the longest standing excision specialist in Canada as well as a well known highly trained thoracic surgeon as well. 

I am smiling thanks to all the support that I have both physically beside me as well as my endo community online cheering me on, but I am also ready to vomit from all the things previously said. 

I am thankful for my blog along with my social media platform that I can document this journey. 

That I can educate and show other people in the same situation as myself that they are not alone. 

So here’s to surgery!!

Here’s to all the positive vibes, spoons, healing energies, powers above, skill, education and a dash of luck; that everything will be just fine!!!