Last week I wrote about the CMS site that shows what payments healthcare providers have received from companies (2013 through 2017). It was kind of eye-opening for a lot of us.
Then, one of our local EndoSisters asked if I could put it in a format to compare the local doctors here in California that many of us go to. Of course, I chomped at the bit for any excuse to make a spreadsheet…
And it was even more eye-opening. I gathered the data from the CMS site, compiled it all into a visual format for each of the doctors that we’ve recommended (or not recommended) to each other in our private Bloomin’ Uterus support group. I’ve shared this data with my girls, but wanted to also share it with you guys. Not every one of our doctors showed up on the list (yay!).
I encourage you to look up your physician on the CMS OpenPaymentData site. Look at each year. Analyze the payments: was it for food, consultations, research, or education? Feel free to jot down notes and ask your physician what the payments were for. And decide if, based on their answers, you feel like continuing your care with them.
Why is this so important to me?
As a woman who suffers from Endometriosis, our prescription treatment options are limited and chock-full of side effects. Birth control pills, IUDs, Lupron Depot, Orilissa, Letrozole: medications that only mask symptoms and do nothing to stop the progression of the disease. And some of the physicians that we go to seem to have been paid a lot of money by pharmaceutical companies for consulting, research, and other fees.
…which leads me to think their treatment plans may be biased. But that’s just me being a conspiracy theorist and (without having spoken to these physicians) assumed it can be a sign of their integrity; or lack thereof.
BUT I wanted to share the spreadsheet with YOU! Again, all of the data was taken from the Open Payments Data webpage. There’s a “Master” tab to view all of the entries of our physicians, then each doctor has their own individual tab so you can see the breakdown of payments from companies, as well as the percentage of what those payments went to (food, lodging, speaking, research, etc.). The “Payee” column has hyperlinks to the companies, so you can find out what they make (and figure out why they were reaching out to your healthcare provider). Many are pharmaceutical companies, but some are also medical device manufacturers, surgical equipment vendors, etc. And many of the payments to physicians are purely for food and beverage, but a few of the physicians have giant chunks of pay for research, funding, and consulting. I again encourage you to talk to your provider to find out what these payments may have been for…and if it influences their treatment of your symptoms.
And to those of you who don’t want to spend the time scrolling through a spreadsheet (especially if you’re on your smartphone), here’s the breakdowns of the doctors our Bloomin’ Uterus San Diego & SoCal girls have seen (and either recommended…or not recommended):
The week FLEW by! April is ending. May is right around the corner!! Are you ready?
Summer is here!!!
Today’s quote is by Charles Dickens:
“No one is useless in this world,” retorted the Secretary, “who lightens the burden of it for any one else.”
Be that friend who lightens a burden. It could be you lend an ear, a shoulder, or even a smile. Or just reach out and say hello for the first time in a long time. Offer your presence. And have a WONDERFUL week!
There’s a site available where we can now look up our physicians to see what they’ve been paid by companies for their time at speaking engagements, travel, training, and even research.
Why is this helpful?
It might not be. But it’s a wonderful way to get a snapshot of what companies may be lining the pockets, and possibly influencing the choices, of your doctor. (Yes, that’s the conspiracy theorist in me coming out).
Open Payments Data is run by the Center for Medicare and Medicaid Services has a searchable database where you plug in your physician’s info and it brings up their data for the past few years. Or you can search by company! According to CMS, the site was created “to provide the public with a more transparent healthcare system.”
For example, the image above is a breakdown of the top 10 physicians paid by Abbvie, Inc. in 2017 for speaking at events, consulting fees, grants, royalties, education, travel, food, and lodging.
A further breakdown of payments is available, telling you how much a physician was paid for each category (speaking, food, lodging, etc.). If you have questions about what the payments were for, it’s best to reach out to your physician and ask. The site doesn’t provide specifics; just data.
I’ve already looked up my excision surgeon, my colorectal surgeon, my primary care physician, and a few other surgeons I’ve heard of. It’s been fun! Have at it…and strike up a conversation with your physician if you feel so inclined.
Here’s the 2017 general payments breakdown for my excision surgeon, Dr. Mel Kurtulus:
And here’s the 2017 general payments breakdown for a popular Endometriosis physician down here in San Diego, Dr. Sanjay Agarwal:
Notice the difference? I sure did…
~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa
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.
Our friend and local EndoSister, Maggie Flood of Sacral Spaces, shared something very uplifting in our support group’s page today and I wanted to share it with you:
Just wanted to share a little piece of my weekend with you guys! I posted this on Insta because I am feeling SO GOOD today after my weekend flair-up, and here’s why: …. I had what I can only describe as a flair-up of some sort this weekend. Is it “autoimmune”? Yeah, probably. Is it from “endometriosis”? Eh, maybe. Is there something wrong with me? No, everything is correct, because the diagnosis nor the label matter. What matters is that something happened, and I knew what it was that set me off. On Friday night I let myself get too hungry before we went to a friend’s birthday gathering at a crappy bar. I felt faint and needed SOMETHING so I ate a piece of a friend’s quesadilla in utter desperation. Fast forward through two days and my abdomen felt like burning charcoals from the inside, the skin all over my body feeling like a bruise to the touch… random shooting pains like electricity through my wrists, fingers, and hips. . Here’s where I can choose to say “life is awful – I can’t even have some cheese without being in pain.” Instead I choose to say, “Life is amazing. My body is AMAZING! It’s BEAUTIFUL how sensitive I am. I’m so grateful that I have a body that can tell me what’s right and what’s wrong.” Only I can experience what I experience. . Instead of forcing myself to do more than I could, I laid on the beach and continued my research on trauma and autoimmune disorders yesterday (how beautifully hilarious and timely). When I felt them I took some moments to close my eyes and allow the electric shocks run through me, felt my body recalibrating. I imagined the sun soaking them up. I felt the cold spring wind. I laughed. I’m alive, and I’m human. This is what I signed up for.
Thank you, Maggie. I oftentimes bemoan the fact that I can’t have this or can’t have that. And I truly hope that your positive body thinking reminds me later that I am grateful for the body I have and the awareness that comes with it.
Maggie will be teaching a class on Navigating Painful Sex on May 19th in San Diego. If you’re interested in joining us, we’d love to have you!
It’s Friday. The end of the week. The middle of April! I hope you’re doing well.
Today’s is a lesson in courage…
Yesterday I had my annual ultrasound; it was my first since June 2018…and I had both the transvaginal and the traditional over-the-belly ultrasounds. My first since my two 2018 surgeries. And I was excited.
Both ovaries were found. Exhale a sigh of relief! I’m always worried one will be hiding (usually my right)…and tucked under something via adhesions. The right was visualized and the image captured on still-frame. The tech moved to do the same to the left ovary. She found it, snapped an image, and:
“It seems you have a little cyst action going on,” she says.
“My left one is known for that,” I reply.
She looks a little deeper and longer. Snaps a few images. “Maybe one of those endometriomas…” she pondered.
My heart sank. “During all my past surgeries, it’s always had one on the left ovary.”
Maybe. Maybe not. But…maybe.
I won’t see my doctor until April 22nd to talk about the results of the ultrasound. I know that I need to wait to hear it from him. I know that I am not in any pain. I’ve not had the symptoms of Endometriosis since I healed from my November surgery. I know that I shouldn’t be dwelling on the “maybe.”
But I cried on the drive home. I tried to cheer myself up with a manicure at the mall. It worked until I was alone again in the car. And I cried again. I walked through the front door…and my husband was there. He immediately scooped me into a hug, “What’s wrong?”
I blabbered about the visit through sniffles and that weird grief-voice people sometimes get after long cries. He led me to the couch, shifted our position so I could more readily smoosh into his armpit and shoulder, and he stroked my head and just let me cry and worry.
He reassured me that I will see my doctor on the 22nd. And reiterated that I hadn’t been in any pain. But also agreed with me that just knowing it may be in my body again, this soon, was disheartening.
“I feel like it’s never going to end,” I remember saying.
We watched a bit of TV together on the couch and I then decided to clean the bathroom. We have guests coming this weekend and it’s needed…and I thought the distraction would be helpful. But in the middle of scrubbing the tub, I broke down again. A good ol’ ugly cry.
I wrote about it in my journal. I went to bed still feeling saddened and betrayed by my body.
And I’m sharing it here. Why?
Today is a new day. Life is full of maybes. And I am NOT in any pain. I may have a regular cyst. Or I may have an endometrioma. But as of right now: I don’t have ANY pain. My doc may likely order another ultrasound in a few months to monitor the cyst. Hopefully it’s just a regular cyst and will fade on it’s own.
While getting dressed this morning, I found my old t-shirt from Lauren Siciliano. On the back of it, it reads, “Endometriosis Awareness. Courage, Faith, Strength & Hope.“
Today I need each of those qualities. And wearing the shirt helps.
Maybe you’re going through something similar today…hold onto that courage, faith, strength, and hope that I know you possess. Cling to it, desperately. Don’t let it go.
On March 30, 2019, a few of us got together to support one another and walk together for Endometriosis awareness. This year we had a total of 275 attendees! Two Hundred Seventy-Five!!!! You guys – that’s insane!! I’m still so very excited! If you weren’t aware, this year we gathered once more at NTC Park at Liberty Station.
This was our first year where we actually had amplified sound (thanks for the generator, Todd!). So, we had a welcome speech, and several EndoSisters and their support came up to say a few words. The microphone was made available to anyone who wished to say a few words. Wonderful stories, thanks, and advice was shared.
We also had some beautiful posters up on display:
We also had a fun little temporary tattoo booth this year. We’d totally like to do this again! I was assured by the manufacturer that there was no latex in the tattoos, but someone had a small latex-allergic reaction. So sorry about that!
Our walk was a one-mile trek around the park, which ended back where we started. Many stayed afterward to enjoy lunch together on the grass in our perfect San Diego weather. It was wonderful. The whole damn day was wonderful.
I cannot amply express to you how wonderful it is to be surrounded by fellow EndoWarriors. And their family, friends, and support networks. There was SO much yellow! So many smiles. So many tears. We are all family. And we are all in this together. And just knowing that, seeing that, FEELING that with you all present – that is why we’ll continue to do these walks. Always.
We had two running campaigns this year: 1) fundraising for the Endometriosis Foundation of America and 2) fundraising for the expenses of the walk.
And this year we asked for your help to fund the costs of the walk (it cost $1,558.19 to put on this year’s walk). And with the generous support of our donors, 97.5% of our out-of-pocket costs was covered by donations! This truly is OUR walk! THANK YOU!!!!! If any of our readers would like to see a detailed accounting of costs and donations, please contact me. I’d love to share it all with you. 100% transparency here.
A special moment
Before the walk started, Sister Donatella Soul took the microphone. She not only introduced herself and described what the San Diego Sisters of Perpetual Indulgence do, but she took a moment to do something incredible for me. Let me preface by saying I’ve known Donatella since 2015 and she’s been a constant pillar of strength for my own Endo journey, and those of others. We’ve become incredibly close and I am honored with her presence in my life. She’s also made it her personal mission to advocate for those with Endometriosis and to raise awareness for this illness. She’s incredible; she’s one of my heroes.
Even sitting her trying to type it out brings tears to my eyes. She recognized my efforts, not only for the walk, but for bringing our community together; gathering EndoWarriors, giving us a place to learn, love, and grow together. I do not do this for the recognition. If you know me, you know that.
But Donatella petitioned the San Diego Sisters of Perpetual Indulgence to give me the highest honor they could bestow upon a non-member: the title of Angel Anne Doe, Keeper of the Flowering Chalice of Power. And the title came with a beautiful certificate, a lovely lapel pin of angel wings, and the best hug EVER.
My hero. My hero did this for me. And I am so honored. And touched.
ALL THE Photographs!!!
Viewing these photographs may best be done on a PC or laptop as the image sizes are large and loading times may vary. if you SAVE and/or share these photographs, please give credit to the respective photographers.
A HUGE thank you to Richard T. Reyes and Exxes Hauffen of Compass Media Productions. Year after year, you two come back and capture our moments, our hugs, our memories, and our strength; all out of the goodness of your hearts. You’re incredible. And we thank you for it.
Richard has been a huge part of my Endometriosis journey and an incredible part of our little Endo family. He has been photographing our EndoWalks and gatherings for four years now and we are blessed to call him friend. ❤ Richard shares three galleries of photos with us today: a group photo, the pre-walk gathering , and the walk itself. Not only is he an incredible photographer, but also a wonderful artist! You can follow him on Facebook and Instagram.
Exxes Hauffen of Compass Media Productions is a good friend of mine, too. We met a few years ago as he was the videographer for our wedding. And we kind of bonded over various interests and now he’s stuck with me. Exxes has also streamlined the “Stronger than Endo” project, making it possible for a few of us EndoWarriors to share our stories, as well as spread awareness of the illness. The full interviews of each participant will be released later this year. Exxes donates his time, skill, and passion to our walks as a photographer. You can view the Title page for our EndoWalk photographs, or follow the page directly to Endo Walk photos (while we circled the park) and the Endo Gathering (speeches, arrivals, etc.). If you would like to download any of the photographs taken by Compass Media Productions, please do so before July 11, 2019. If you’d like to view the high-res version of our group photo, just scroll back to the top and click on it; it will open in a new window.
There are several videos and photographs that our walkers have shared on their Facebook pages. Many of which were tagged in our Event. Please feel free to check our Facebook event page for any posts, photos, or videos as well.
If you have ANY issues accessing these photographs, please contact me.
This year we had a game of Endo Bingo (or as some called it, Endo Tic-Tac-Toe) thanks to an EndoWarrior in our BU Crew, Andrea. It was a fun way to get people involved with one another, learn about Endometriosis journeys, or what support people went through.
At the end of the walk, everyone turned in their Bingo cards and winners where randomly pulled out of a big box. A huge thanks to our prize donors this year:
1. A brand spankin’ new Livia unit! Many gals have found relief from menstrual cramps when using this little device (myself included). It’s a $150 value. Thank you Livia! 2. A gift certificate to Natural Harmony Reproductive Health (I love you Merritt!) for an initial consultation and acupuncture session. A $175 value. Thank you Merritt Jones! 3. A gift certificate to Sacral Spaces for either a 90-minute session of acupuncture OR an introduction to pelvic reintegration work. A $230 value. Thank you Maggie Flood! 4. A gift certificate to Skin & Wax Bar in Poway for some pampering! A $50 value! Thanks Skin & Wax Bar!!! 5. A $50 gift certificate for a service with Hair By Kayleigh Elizabeth in Carlsbad, CA! This woman puts a little bit of color into my life… 6. A $50 gift certificate for a handmade flowered crown by MsFormaldehynde, 7. A foot reflexology session by Youko Hasegawa of Youko Touch.
I would like to take a moment to thank ALL of our volunteers for this year’s walk; whether you were assigned a volunteer role or just stepped up and filled a need. This would not have been possible without your help. Brooklyn, Caryn, Heather, my husband, Kelly, Kristin, Leesett, Marie, Mom, Nicole, Timbrely, Todd, Rosie, Emily, and Kathryn; I owe you so much gratitude. And if I missed someone, please let me know. ❤
I’d also like to shout out to our vendors who made the walk doable: The City of San Diego Parks & Recreation Department for the permit, Debris Box for the trash dumpster, and Safiro’s Sanitation for the port-o-potties.
And if you are a member of our BU support group, you (hopefully) received a keychain created and donated by Sierra Alford. They’re gorgeous! If you didn’t get yours, get in touch with me!
And if anyone would like to volunteer for future walks in any capacity, please contact me.
As part of our 2019 wrap-up survey to all attendees, I asked people to share their favorite moments. And I share them with you (with permission, of course):
It was a beautiful setting to have the walk. It really touched me to see the other women who are going through the same issues I am. Just being with everyone was my favorite!
My sisters face, smiling enjoying herself, as if nothing was wrong at all, that is priceless.
It was all amazing as it was our first walk and we loved that there was over twice the amount of support people that was lovely.
It’s hard to pick a favorite moment, I love it all. The speeches were great.
The unexpected honor bestowed upon me by Sister Donatella Soul on behalf of the San Diego Sisters of Perpetual Indulgence: the title of “Angel Anne Doe: Keeper of the Flowering Chalice of Power.” I don’t do this for the recognition. Ever. But it was so damn touching and wonderful and perfect. And I need a tissue now just thinking about it. The amount of people who have come up to me afterward, or emailed/texted telling me I deserve those wings, that I am an angel, and also having my surgeon tell me recently that I am an angel sent from heaven for our EndoWarriors – it’s too much. And having one of my dearest friends be the one to give me those wings is priceless. Surrounded by my friends and family? Even moreso. It is my honor, privilege, and joy to bring us together, and I love our little family. Thank you.
Meeting all my endo sisters and seeing all the amazing supporters we had there.
Hugging my sisters!
Lisa’s tutu!!! So fluffy & squishy.
Lisa getting Angel wings!
The whole thing from beginning to end!!
The talks before the group picture, made me cry and touched my heart!
Watching everyone get big hugs.
Seeing how much the walk has grown. Loved the breathing and stretching before hand. And listening to the fellow speakers.
When the Sisters of Perpetual Indulgence made Lisa an Angel.
All of them.
Lisa’s being initiated into the Sister’s of Perpetual Indulgence. (I’m not crying, you’re crying).
Being able to see the community and come together.
Just seeing other sisters that are in the areas seeing that I am not alone.
Meeting new people!
Speeches before the walk, my husband loved [Lisa’s] husband’s speech!
When I was able to thank all the beautiful endosisters, Lisa, and my family for their love and support through my journey. I also would say it would be making a new friend. Caryn she was so friendly and awesome!!
We look forward to many more memories ahead.
Like any event, we had a few snafus, hang-ups, and mistakes. We will always strive to get better and better each year, but this year’s were a bit fun. Thanks to everyone who submitted feedback surveys!
There were two sets of port-o-potties this year! What?!? And one you couldn’t even get into! Well, it turns out the set closest to the City restrooms belonged to an event that was scheduled for March 31, 2019; the next day. They had their Blue Rooms delivered early (much to the surprise of the City representative who was present), and placed the portos in a fashion to where they could not be accessed by anyone. This caused a bit of confusion among several attendees. Our two lonely port-o-potties were further down in the parking lot surrounded by yellow cones. If you had the pleasure of using our porto’s, they were so immaculate and clean! OMG!! I’ll use Safiro’s FOREVER!
The park has a weird “no signs” rule. I’m going to talk to the City representative for next year because there were a few other events going on in the park that morning and having a big ol’ yellow sign would be helpful to directing traffic to the appropriate field. We’d also like to have signage for the Tattoo Parlor, Check-in, and the Medical area to better point out these fun little stations.
The event started at 11:00, but the walk didn’t head out ’til about 40 minutes later. There were games and speeches and stretching between check-in and walking. Some people weren’t able to stay due to tight schedules…so for next year we’ll be releasing a schedule of events. (Why didn’t I think of that before?!?!)
I’ve received such wonderful feedback about our check-in volunteers. Check-in, I understand, was a bit confusing because it was by first name this year. In year’s past, it’s been by last name. So please expect to register with mandatory last names in future events. Also in the future, if you register for multiple people, you will have the option to pick up everyone’s badges when you check-in .
Every year we learn. And every year we put new ideas to work. And, again, thank you to EVERYONE who submitted feedback. If you have any other ideas on how we can continue to improve our walks, you can email them to me at any time.
So many things!!! I’ve never been one to just have a walk once a year and leave you Warriors stranded for the rest of the 364 days. We do stuff often!
We meet once a month for a face-to-face support group meeting. We’ve got one on April 14, 2019, and another on April 27, 2019.
We hold workshops as often as we can arrange them with professionals! We’ve got the May 19, 2019, Navigating Painful Sex workshop by our very own Maggie Flood coming up!
In June, my excision surgeon Dr. Mel Kurtulus and I will be presenting about Endometriosis to the Exceptional Family Member’s Program at the Marine Corp. Recruitment Depot.
A workshop about Pelvic Floor Therapy and Endometriosis is in the works.
A workshop about the emotional affects of Endometriosis (and how best to handle it) is also in the works.
Planning for 2020’s walk is already underway. Again, if you’re interested in volunteering please contact me.
We’ll be putting together separate online forums for moms, dads, siblings, friends, and partners of EndoWarriors to email each other to discuss tips, tricks, suggestions, share stories, and support one another.
Have an idea for an event, workshop, etc.? Let me know!
Again, thank you to everyone involved in our 2019 walk: and this goes to volunteers, photographers, and attendees. I’m still flying high, even several weeks later.