Endometriosis 💛🎗🌻

It’s been exactly 10 months (to the day) since I took this photo.  This girl didn’t know it at the time… but all these months later, it would mean a lot more to her than she ever imagined.  Sunflowers would take on an entirely different meaning & symbolism.  They would make her feel weak, while also making her feel strong.

I’ve been trying to figure out the best time and the best way to say this… but days, weeks, and months have passed and I’m not any closer to finding a way.  So I think it’s time that I just rip the bandaid off and say it.  I have Endometriosis. 🎗🌻

I’ve known something wasn’t right for a while now, but I didn’t have the words to describe it.  80 days ago, I went in for an MRI on my stomach.  A week and one day later, I went to the hospital again for an ultrasound to confirm the findings from the MRI. Both concluded there was plenty of evidence to support suspected endometriosis.  And more alarmingly, both showed a cyst larger than a baseball hanging out on/by my right ovary that needs to be evicted asap.

It’s taken these past two months just to find a doctor who was willing to work on me.  My new surgical gynecologist at our local hospital- nope, my case is too complex for him.  Our specialists who we assumed would be the answer- nope, this is all even above their scope.  After a near mental breakdown and some pleading, I was able to get them to refer me to someone… a minimally invasive surgical specialist down at Beth Israel Deaconess Medical Center in Boston.

Eliot and I traveled down to MA to meet with him last week.  (I didn’t even have to wait the 5-6 months on their waiting list because my case was too high of a priority.)  But thankfully, not only was he amazing, but he validated everything I’ve been feeling- while confirming my endometriosis diagnosis and finally giving me a path forward… excision surgery to remove all of the endometriosis lesions and the giant cyst that’s taken up residence in my stomach.  For the first time in months, I saw a glimmer of hope. 

I know that I’ve mostly been off the radar for awhile.  I've been desperately trying to keep my social media accounts active... but I've exhausted most of my efforts on that.  To be totally honest, Melissa’s having a hell of a time taking care of Melissa right now.  

Endometriosis has sucked the life out of me… quite literally.  I’m not really ok physically, mentally or emotionally.  Coming to terms with the fact that I have a chronic illness that has no real cure has been a rough road to travel down… but I’m getting there.  I’m sore and I hurt constantly.  I can feel the cyst… and on days when I’m brave enough to look in a mirror, I can see where it resides.  

The mental gymnastics that I’ve been through on this journey is ridiculous.  Women's health is not taken as seriously as it should be.  I’m incredibly thankful that the past two months have gone as well as they have.  Because what is blatantly apparent to me now, is how long I’ve had these problems.  Events from the past 5+ years suddenly make sense.  Those two times that I had food poisoning after Christmas, while everyone else was fine?  Endometriosis.  All of the stomach pains, cramping and pain during my period, urination or bowel movements?  Endometriosis.  It’s been here all along, with quite literally all of the symptoms that come with it.  But it’s taken this long to get to the cause of my symptoms- and that would drive anyone crazy.

And the exhaustion that comes with endometriosis… it’s a special hell that I can’t even describe.  If I could spend all day, every day in bed, I would.  That’s just not who I am. Lately, I’ve taken to bursting into tears over the fact that I can’t do anything without it exhausting me.  Occasionally, I’ll have a day where I mostly feel fine, but a lot of the time I feel like a shell of the person I once was.  My schedule now revolves around days I shower and go out to do things, and days I stay in my pjs/loungewear and hang out on the couch at home.  If I schedule two “go out" days in a row… I pay for it.  And naps- those are the most glorious things in the world right now.  My bed is my greatest friend.

Honestly, it’s been awful.  And I hate myself for complaining because I know there are many people who have it so much worse than I do.  

Thankfully, I finally have some hope on the horizon… My surgery hasn't been scheduled yet, but I should be hearing from them any day now.  I am anticipating that sometime this summer we will be traveling down to Boston for my operation.

To be honest, I’m terrified of having another surgery.  This one is a minimally invasive laparoscopy, but it’s still on my stomach.  My recovery will be more extensive than my knee surgery years ago.  Plus, there’s no way of knowing what stage of endometriosis you have until they’re inside of you looking for it and seeing just how bad things are.  (Endometriosis is usually only diagnosed through exploratory surgery.)  My imaging already shows enough that they’ve confidently diagnosed me without the initial surgery.  So now I’m scared of what they’ll actually find.  It's very overwhelming to me... but the good news is that I’m confident my doctor will be able to remove it.

So this is what my life looks like right now.  I'd like to tell you that I'll be on here more often, but right now I simply don't know what the future holds.  I will try to keep you updated though... whether it's here or on my social media accounts.  Mostly, I’m really hoping that sooner than later, I’m going to feel a lot more like me again.  

Finally, I’d like to send out a special thank you to my Mom for spending many days listening to me whine, complain, breakdown and cry throughout this entire frustrating process.  And an even bigger thank you to Eliot for quite literally picking me up when I’ve fallen, driving me around everywhere (since I can’t seem to stay awake), taking me to appointments, holding me tight (but not too tight) when I cry, and for standing beside me holding my hand through everything. 

Here's hoping that my future looks much brighter. 💛🎗🌻