Thank you to everyone for the outpouring of support from my emotional Friday. I’ve received so many virtual and in-person hugs. It’s awesome. You guys are awesome.
I wanted to let you know I’m doing well. I look forward to my meeting with my physician on April 22nd to go over the ultrasound results and have a heart-to-heart talk. And trying to remain positive.
What’s up with the above-photo? I recently developed a roll of black & white film that had been in my camera for the past several months. I couldn’t remember what was on it, but I do have one rule when it comes to my photography: one weird, creative, or special selfie must be taken. It’s often hit and miss as it’s an old camera (a Minolta XG-1 from 1982) as there’s no auto focus…haha, but it always makes for a fun project.
Yesterday I picked up my pictures from the developer here in San Diego. And the above photograph is the very first one in the pile. I had totally forgotten about taking it. Was clueless it was on there. And wasn’t prepared for the flood of emotions that boiled up to the surface. This was taken about a week after my July surgery.
I felt sad, then angry at this relentless disease, then sad again. Overwhelmingly so. But as I stared at the photo while safely tucked inside my Jeep parked in the parking garage in downtown San Diego trying not to cry, those negative feelings morphed into something else: a sense of pride, strength, and courage.
There I was, a week after my surgery: I felt well enough to shower alone. And set up the camera on the bathroom counter, tinker with settings, and cross my fingers hoping it would come out. Unashamed of the broken body that the camera would capture, I stood tall and strong.
And this photograph captured that moment.
Our moment. I know that you, EndoWarriors, have stared into the mirror at your incisions, your bandages, your scars, your pain. Stand tall with me.
We can get through this.
All is well.
Regardless of the journey…We are alive, and we are in this together.
March 16, 2019; the screening will begin at 1:00p.m. UC San Diego Skaggs School of Pharmacy & Pharmaceutical Sciences; HSEC Auditorium; 9500 Gilman Drive; La Jolla, CA 92093. There will be free parking on the campus.
Endometriosis or “endo” is the most common, devastating disease that most people have never heard of. It affects 1 in 10 girls and women. That’s approximately 176,000,000 people on the planet.
Despite its prevalence, women see an average of 8 doctors for 10 years before diagnosis. During that time, many are forced to miss school, leave careers they love, abandon dreams of having children and watch their personal relationships suffer. They’re often told incorrectly by doctors that pregnancy & hysterectomy are cures and that pain is normal or in their heads. After diagnosis, they’re usually prescribed an array of drugs & undergo multiple, ineffective surgeries.
It’s time to break that cycle. It’s time for a new normal that doesn’t mean multiple doctors, drugs, surgeries, misdiagnoses and years of pain. The only film of its kind, Endo What? gives an accurate, up-to-date base of knowledge straight from the experts.
It’s a film to educate & put power where it belongs – in the hands of girls & women.
Where: UC San Diego Skaggs School of Pharmacy and Pharmaceutical Sciences; HSEC Auditorium; 9500 Gilman Drive; La Jolla, CA 92093. Follow the stairs outside the building down to the lower level.
Parking: There will be free parking available at the parking structure in the blue-highlighted area:
I’d like to extend a HUGE thank you to Dr. Sally Rafie and Sister Donatella Soul for all of their hard work in helping me bring this event to the San Diego community.
My good friend Exxes Hauffen owns Compass Media Productions. One day he asked me, “What’s all this uterus business about?” – regarding all of my Facebook posts. So, I told him about Endometriosis and his next question was, “How can I help?”
Thus the beginnings of “Stronger Than Endo.”
A few local San Diegan Endo Sisters volunteered to share their stories and struggles. Exxes focused more on the emotional and quality-of-life aspects of the illness, rather than the physical symptoms that we are already so aware of.
What you watch today is the end result of months of hard work. I am honored by the voice Exxes has granted us.
Exxes, thank you for your endless hours of dedication, for the passion that burned so brightly within you during the interviews, your hunger for knowledge, and your undying desire to bring awareness to this disease.
To Dr. Kurtulus, thank you for dedicating an afternoon of your time to this project, for your endless compassion and drive to give each EndoSister a greater chance at normalcy, and for giving me my life back. Your passion is evident every time I see you. And your “approachableness” is one of my favorite qualities you possess. You’re incredible; not just as a physician, but as a human being.
To Heidi, Merritt, and Zeiddy, I will never be able to thank you Brave Warriors enough. Not only for opening up your hearts to the world but for your ongoing support and love you have for other EndoSisters, even while you endure your own Battles.
This is truly a labor of love. Exxes filmed, edited, and produced this documentary free of charge. Dr. Kurtulus was not compensated for his time. And neither were myself or the interviewed EndoSisters. We hope that you enjoy, embrace, and share this video.
Without further ado, I give you “Stronger Than Endo”:
The full interviews with each EndoSister and Dr. Kurtulus will be made available shortly and shared separately.
And Exxes isn’t done yet. He’d like to continue interviewing EndoSisters and sharing our Journeys. A note:
The views and opinions expressed in this video are purely that: opinions. We understand that there are several theories as to the cause of Endometriosis, as well as the treatments. No one theory is correct. And we honor all opinions.
Oh man! I cannot tell you how wonderfully excited I am after this weekend’s walk!
It was the 4th Annual Bloomin’ Uterus Awareness & Support Walk in San Diego and it was our largest one yet! Out of 150 registered walkers, 120 people joined us. It was awesome! Thank you, everyone, who attended!
This year, we raised $1,317.90 for the Endometriosis Foundation of America, totaling $7,065.44 raised since 2014. A HUGE thank you to everyone who donated or purchased t-shirts! We were able to once again surpass our fundraising goal! And due to an incredible donation by my employers, we were able to hand out free Bloomin’ Uterus buttons to everyone! I’m just flabbergasted!
This is my fourth year hosting our walk. When I received my diagnosis, there was nothing in San Diego and I needed something. Absolutely needed it. Does that need ever diminish? I must say: nope. Being able to be around EndoSisters who understand, to be able to hug their friends and family and thank them for their support, and to watch other EndoSisters meet and interact: it’s awesome. And it really drives home that the need to be around people who get it…around people who aren’t judgmental…is critical to our mental well-being. Well, mine at least. And we even met a few people along our route that had Endometriosis and will join us next year!
I’m still floating on Cloud 9.
Prior to the walk, 34 EndoSisters completed a survey about their Endometriosis. This sign was displayed at our check-in desk; a way of affirming that we truly aren’t alone in our fight.
The little pie chart in the center is asking if surgery (whether it be excision, ablation, or hysterectomy) helped with their Endo symptoms and pain. The responses were:
1 – It’s worse than before
1 – No Endo was removed during surgery
5 – Yes
10 – No
17 – It did for a while
And my favorite part? We’ve all been told that Endometriosis developing on the spine is “incredibly rare”…yet three, yes THREE, of the 34 women who answered this survey have a confirmed diagnosis of Endometriosis on their spines. Talk about embracing the fact that you aren’t alone!
If you’d like to see all of the photographs and video shared by our attendees, please click here.
This year, seven of us delivered a speech together. There’s video out there of the speech (filmed by the wonderful Alyssa Menard):
If you can’t hear passed our sniffles and snorts and giggles and airplanes flying overhead, our words are below. I wanted to send a loving thank you to those brave women who volunteered to speak with me:
Lisa: Thank you, everyone, for coming today. I cannot express enough how much it means to me…to each of us. Can I have all of my EndoSisters join me over here? Many of us were not taken seriously when we would discuss our pain. It may have been dismissed, we were called fakers or weak, or told that it was all in our heads. We’ve heard “Nothing is wrong” or “Pop an Advil” or my personal favorite, “Periods aren’t that bad. Suck it up.” Words like this, treatment like this, is demeaning to an already crushed soul. I gave up. I figured it was normal. And that I was weak, crazy, or just cursed.
Mirna: Our pain has a name: Endometriosis. We aren’t crazy, we aren’t weak, and we aren’t faking. But even with a diagnosis, sometimes our pain still isn’t taken seriously and we are dismissed or judged by the medical community, employers, coworkers, friends, or even family.
Jessica: We are here today to change that. 1 in 10 women suffer, but here we are walking side by side, a mighty force of Warriors. Warriors with an ultimatum to Endo: we will overcome!! We will not be beat. And we are not alone. We may have days where we are forced down, stuck in bed, or in agony as we go about our day…but we will rise again. And we stand with the help of our Sisters, our family, and our friends.
Kelly: Endo just doesn’t cause physical pain. Sometimes we feel like an incomplete woman, robbed of so many dreams. And some of us can be jealous of those who have children, don’t have to carry a small pharmacy around in their purse, or can live a fulfilling and active life. But this community that we’ve built together personally helps me cope with the physical and mental downers. Someone, maybe even you, has been there to support me when I needed it. And here we are today, lifting each other up. This is what we are all about. We are Sisters. We are family. When you go home, please don’t let this energy that you’re feeling die.
Gloria: Friends and family, please listen when we tell you that we are hurting, or we can’t go do something because of a flare-up; don’t judge or criticize us or think we’re lying. Continue to offer that compassion and support I know you all have within you.
Meghan: And to my EndoSisters, stay strong, be there for one another, and don’t be afraid to self-advocate. Push your physicians to do their research to better understand how best to handle our illness. And if you don’t agree with their opinions or tactics, find another doctor. There are great ones out there.
Melinda: One day there will be a better understanding of this illness; of this enemy we all fight together. But until that day, let us hold our heads high and march on. I am grateful for each of you. We are grateful for you. Thank you.
I am so excited and looking forward to next year. If you’re interested in joining us for 2019, stay tuned!
And remember, we are all incredibly strong and powerful. And we can stand up to Endo…Together!