“Rose of Sharon” was diagnosed when she was 26 years old. Now 44, she comes to us (and you) for help.
Rose of Sharon’s Journey: For 19 years I suffered in silence ’cause no one took my condition seriously not even doctors! I feel as though I was cursed! Can’t keep a relationship, a job & a happy life. Endometriosis stole my entire life!
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My third robotic-assisted laparoscopic surgery is now seven days away. As I lay awake in bed last night, my mind wandered to the process: pre-op/intake, placement of the IV, a conversation with my surgeon, trying to wear a brave face as my Mom and husband do the same, the ride down the hallway with the overhead lights (just like in the movies), the surgery room doors opening, and being greeted by staff as they make last-minute preparations for the procedure. Then the moment of being placed on the operating table, getting strapped in, and the anesthesiologist coming to send me off to sleep.
It’s not easy. It’s not a grand adventure. But, partially it IS an adventure: the hope of relief, of a returning quality of life, a possibility of normalcy. But, let’s be honest…it’s terrifying, it’s scary, and it’s going to hurt when you wake up…and the recovery takes weeks just to function; months to feel normal. And for some women: they never get that sense of normalcy.
So, last night as these thoughts tumbled through my brain, I reached my hand out to my husband and laid it on his hip. Before I knew what I was saying, the words “I’m nervous,” gently babbled out of my mouth.
He reached down and stroked my hand with his, then he pulled my hand up to his heart and held it there. I closed my eyes and silently let the tears flow. And he just held my hand firmly against his beating heart. Until I fell asleep.
I love him. So very, very much.
I often get asked, “How does your husband deal with your illness?”
This. This is how.
I don’t know where I would be in this Journey without him.
The Endometriosis Family Support Group is hosting a free webinar on Tuesday, July 17, 2018, at 5:30pm with Dr. Julie Sarton regarding Pelvic Floor Therapy. If interested, please e-mail Megan to register. If you cannot attend on July 17th, we will share the recording once we receive the link.
Be well.
Coby-Lea was recently diagnosed with Endometriosis at 22 years old. Living in Northern Rivers, New South Wales, she wanted to share her story with others today.
Coby-Lea’s Journey: My story. Coby-Lea, 22 years old, diagnosed with endometriosis. Since I was 13, I’ve struggled with really extreme ‘period pain’ and abnormal cycles. They’d last for nearly 7 days! They’d be heavy. They’d sometimes have some tissue/clotty stuff. I was 13, I didn’t know what to do. Thankfully, my mum took me to the Dr who then put me on the pill to regulate my cycle and hopefully ease the pain. Fast forward 9 years, I cannot take the unbearable pain anymore. I know myself I am not exaggerating every time I say ‘this is the worst pain I’ve ever had!’. And so, this is where it all begins.
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Michelle from Virginia was diagnosed with Endometriosis when she was 36. Now a year later, she shares her Endo story with us.
Michelle’s Journey: Hi. My name is Michelle. I am sharing this story to help others with endometriosis. I have a very unique story.
In 2003 I came out of the military with a rare bone tumor called fibrous dysplasia. This was and still is in my pelvis. It’s something I went through many years and it took having my third son to put me in a state of barely walking, getting infusions, many rare surgeries at John Hopkins to get the help I needed to walk day-to-day.
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Sorry I’ve been unable to blog lately. I simply haven’t had the time or energy. BUT, it’s Friday. And I’ll always try to make time for Feel Good Fridays! Today’s quote is a doozy and it hit me right in the Feels:
“The storm is out there and every one of us must eventually face the storm. When the storm comes, pray that it will shake you to your roots and break you wide-open. Being broken open by the storm is your only hope. When you are broken open you get to discover for the first time what is inside you. Some people never get to see what is inside them; what beauty, what strength, what truth and love. They were never broken open by the storm. So, don’t run from your pain — run into your pain. Let life’s storm shatter you.”
― Bryant McGill, Simple Reminders: Inspiration for Living Your Best Life
For any of us facing troublesome times, or scary times, or uncertain moments, or trials and tribulations, or even just a moment of sadness…this one is for you. And I. May we hold firm, weather the storm, and pass through it.
Have a wonderful weekend. And I wish you strength and peace. Love, Lisa
My August 15th surgery has just been bumped up to July 18th!!
My work is totally cool with the change. HR even came in to offer some kind words followed by, “I’ve never been more excited for someone to get a surgery.” He knows how much I’ve been hurting lately.
My Mum can still join us!
And I’m nervous and excited and scared and and and…the whole spectrum of emotions that bubble-up with a pending surgery.
Best news ever.
June 30, 2014: a day I went in to have a cyst removed from my ovary and instead awoke to a diagnosis of Endometriosis. Answers. Vindication. My years of pain had a name.
So, I celebrate this day.
I am writing this on Friday, June 29th since I will be away from my computer on Saturday. And today (Friday) I just scheduled my third excision surgery. It will take place on August 15, 2018…almost two years since my last surgery.
June 30, 2014: D-Day (yep, Diagnosis Day); performed by Dr. Mel Kurtulus at the Scripps La Jolla Hospital.
September 21, 2016: Surgery No. 2; performed by Dr. Mel Kurtulus at the Scripps La Jolla Hospital.
August 15, 2018: Scheduled Surgery No. 3 (with the possibility of being sooner if there is an opening in the hospital’s schedule); to be performed by Dr. Mel Kurtulus at the Scripps La Jolla Hospital.
This blog wouldn’t exist without the events that took place on June 30, 2014.
I wouldn’t be seeking answers. Wouldn’t be honoring my body. Wouldn’t be connecting with others.
Our Bloomin’ Uterus support group wouldn’t exist.
There would be no annual walks or monthly get-togethers.
I would have no idea about the other women who suffer with me.
No camaraderie.
No support.
I would still be alone, thinking my pain was normal and that I was weak.
And now I know that I am none of those things.
I am surrounded by Sisters and family. Warriors! Our pain is anything but normal. And none of us are weak.
My life has been made better by being told I have a chronic, incurable illness. And I have met some incredibly strong people because of it. May we continue to hold each other high as we make this Journey together. It’s not easy. But we have each other.
So, celebrate today with me.
Good morning! Can you believe another week has already come and gone? June is OVER! What the heck? I feel like June just started yesterday!
So, it’s Friday. And you know the drill! Today’s quote is all about acknowledging whatever fears or sorrows you may have and giving yourself a great big hug.
“She held herself until the sobs of the child inside subsided entirely. I love you, she told herself. It will all be okay.”
― H. Raven Rose, Shadow Selves: Double Happiness
Whatever it may be that crushes you, hang in there. It will all be okay. And if you need it, reach out for some help for those around you.
Have a wonderful weekend. Love, Lisa.
Bloomin' Uterus 