Category: All Things Endo

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.

 

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. 

 

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.

♥

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.⁣
⁣
♥

It still baffles my mind how this disease plays such a toll on your mental health.

For myself I don’t suffer generalized anxiety or any mental health issues; however this disease is slowly trying to change that.
The first 2 days we were here I was symptom free; it was a glorious 2 days.
During those 2 days I started to have serious conversation with myself;

“Maybe my thoracic symptoms aren’t endo related, maybe they are stress related and since I am away from the day to day stress I no longer have the symptoms.”
“Maye this is all in my mind set and maybe it is hormonally induced anxiety attacks and since I am on vacation and not feeling anxious explains why I am not symptomatic.”

That all came halt when we were at the beach and I couldn’t breathe, I couldn’t get comfortable, I felt so unwell that I couldn’t tell you what hurt or what didn’t feel good and where because it was so overwhelming from head to toe.

It’s just crazy that after 17 years I can still sit here and doubt myself, I can still sit here and doubt my disease.
It’s crazy that after 2.5 years I can still sit here and doubt my thoracic symptoms and make them something they aren’t.

It really goes to show you how much doubt, how much doctors have dismissed us, how much we aren’t heard for so long, when we in fact have definitive answers and yet we still question them.
We still ask ourselves the “but what if…”

I have been confirmed and surgically diagnosed with pelvic endo and at the time 2.5 years ago during my last surgery it was on my bladder, pelvic walls and pouch of douglas.
I do not have a surgically confirmed diagnosis of my thoracic symptoms; however that is going to happen September 19 2019.

I go in for VATS and excision in September. It will be the first lung surgery I have and to say I am nervous is an understatement, but it’s not even being nervous for surgery,
its being nervous of them not finding anything.
Of them going in and coming out and saying “Everything is immaculate” at that point what do we do?

Logically I know the chances of that are slim however there is  a chance, But I guess we will cross that road when we get there.

♥

⁣⁣
Today I had a revelation of sorts. ⁣
I’ve ALWAYS struggled with my body image. ⁣
I have a HORRIBLE relationship with food. ⁣
Its been an ongoing issue since I was 12 years old.
⁣
What this disease does on the inside, you can’t see it’s destructive ways. ⁣
However, once it creates so much inflammation and chaos it has no where to go but outward; in turn,⁣
⁣
I present to you:⁣
⁣The Endo Belly. ⁣
⁣
It’s painful, it’s annoying, it makes me feel 5 months pregnant and twice my body weight. ⁣But honestly, I am over it. ⁣
⁣
I don’t know if @thebirdspapaya has just been able to break my shell and get her wonderful and inspiring messages to resonate enough with me, but here I am. ⁣
⁣
In a crop top, in under pants, in my bathroom; owning it. ⁣
And I think I look pretty stinkin cute! ⁣
⁣
So I am over it, I am over the typical baggy sweaters and shirts I would normally aim for during a flare, to try and hide the fact that I look like I swallowed a basket ball. ⁣
This disease has taken so much already, and with the nice weather hopefully around the corner, this endo belly business is NOT stopping me from showing up and having an amazing summer with my family and friends. ⁣
⁣
Pool side, beach side, park side; you name it, I am there with all my endo belly glory, and pretty damn proud of it. ⁣

So this summer I want everyone to bring their bodies to the beach in all shapes sizes and forms, embrace what your body does for you each and every day.
Don’t miss out on memories because of your inner demons trying to tear you down.
This disease has taken enough life out of me up until now and I will be damned it if ruins my summer!

Endo belly is out in full force but its not raining on my parade!!! ⁣