As I saw contemplating what quote to find today, I thought of my closest friend. My seester, Rosie. We’ve known each other for over a decade, and have had some amazing adventures and have been there to hold each other as we cried over loss and turmoil.
I don’t want to imagine my life without her. We are to grow old together, rock that light-purple tinted hair (or blue), and cruise around the country in a short bus until we die.
Thinking of her made me think of all of my other sisters; my EndoSisters. And I realized that I, too, want to grow old with them, hold their hands as they cry, celebrate our victories together, and cannot imagine my life without them.
So, today’s quote is inspired by you, Rosie:
“Best friend, my wellspring in the wilderness!” ~George Elliott
Your friendship truly is an oasis in the desert. I mourn your absence. And spending our birthdays apart was hard. Know that I love you…as I know you love me. You truly are my other significant other.
The ResearchOutSmarts Endometriosis (ROSE) Study has been ongoing for a few years and they still need our help. They received the 2018 Innovation Challenge Award for researching potential diagnostic tests for menstrual effluent (aka period blood) – congratulations you guys!! I’ve participated in the study and so can you. Yes, you!! But you must be over the age of 18 and NOT pregnant or breastfeeding. Don’t live in the New York area and feel like you can’t help in any way? That’s not true! You can work via e-mail and express mail.
What’s the study all about? Per their webpage, “The goal of the ROSE study is to investigate the causes of endometriosis and bring improved diagnostics and treatments for women with endometriosis…Researchers involved in ROSE are using several approaches to study endometriosis. These include efforts to better understand the genetic basis of the disease and relate this what is occurring at the cellular level in the disease, with particular emphasis on the role of stem cells and the immune system.”
What do you have to do? You sign a consent and answer a few questionnaires. Once enrolled, you provide a DNA sample either through a mouth swab or a blood sample (if you’re local), provide an authorization to collect tissue samples from your prior/future surgery(ies), and provide a sample of your menstrual blood (this part is totallyoptional). When I first participated in the study in late 2014, they only used a diva cup for collecting menstrual blood (which, due to my double cervix, I couldn’t do). But now they’ve offered the use of a small sponge to collect menstrual fluid, too. SO I GET TO DO IT NOW! 😀
I’ve also kept in touch with my contact with the ROSE study and sent them the op reports, pathology reports, and photographs from my 2016 and two 2018 surgeries. If you’ve already participated in the ROSE study and have had subsequent surgeries, please feel free to keep them updated!
Also, the folks at ROSE still need the help of parents, siblings, or children of someone who suffers from Endometriosis. This goes for men and women! I know I’ve poked my brothers and mum to help with this one! Please feel free to pass the ROSE Study link on to your immediate family members! They would answer a questionnaire, provide that same mouth swab DNA sample (or a blood sample), and have the option to provide some period blood (well, the ladies would). I always hear, “I wish there was something I can do to help…” and now they can!
Don’t have Endometriosis? YOU CAN STILL HELP! The ROSE study is looking for control groups (aka women without Endometriosis) to compare to those with Endometriosis. You’d go through the same process: questionnaire, DNA sample, period sample (again…this last bit is totally up to you).
Reach out to someone on the ROSE team by contacting them:
April is over with! Which means, time to share my pain & poop journals! (Is it weird that this is now one of my favorite blogging days?)
But first: the synopsis: I skipped another period. I mean, really, who wants a cycle in April? I only had a few days where I’d literally have like one tiny clot or one instance of a bit of brown goo when I wiped after I peed; I couldn’t consider that a period. I discussed my skipped February and April periods with my gyno; we’re gonna monitor it and see if it continues to happen.
Most of April was pain-free, and the pain or discomfort I felt was due to eating too much or not pooping for a day. Hubby and I had one instance of painful sex, and that was with deep penetration hitting the cervix. And one day I had a sharp, stabbing pain in my lower left abs that wasn’t like my usual “I ate too much” poo-discomfort. I wasn’t able to identify the trigger, but it luckily didn’t last long. And I didn’t have one single painful bowel movement. I love the new Endo-free guts! Zero need for over-the-counter pain medications or prescription pain medications this month!
And here we go! If you’d like to review the day-by-day pain and food journal, here it is.
And for your viewing pleasure, my poop journal! I’m learning the new pattern: if I haven’t pooped in a day, I’m bound to have diarrhea the next day. Sometimes lots of it…
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!
Screenshot of Abbvie General Payments, 2017. Is your doctor on this list? Curious how yours lines up? Feel free to run a search.
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…
Happy hunting!
~ 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
On April 22, 2019, I met with my excision surgeon and gynecologist, Dr. Mel Kurtulus to discuss the results of my annual pap smear, ultrasound, and blood work.
The pap smear came back normal for both of my cervixes. Yay! The blood work came back stellar. The ultrasound; however, had some not-so-welcome results:
Another week has come to a close. Already. Oh my goodness, how time flies!
Do this with me:
“Take a deep breath. Inhale peace. Exhale happiness.” ― A.D. Posey
And do it again. Close your eyes, let it in, fill your lungs and your being. Feel your ribs expand. Deeply. Hold it a second…then exhale. Think of some favorite memory while you do.
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.
My 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.
Bloomin' Uterus 