A comparison of our local doctors

Breakdown of Sanjay Agarwal payments 2013-2017

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):

Breakdown of Sanjay Agarwal payments 2013-2017
Breakdown of Robert Barmeyer payments 2013-2017
Breakdown of Christine Brody payments 2013-2017
Breakdown of Seth Bulow payments 2013-2017
Breakdown of Kim Hui payments 2013-2017
Breakdown of Bruce Kahn payments 2013-2017
Breakdown of Mel Kurtulus payments 2013-2017
Breakdown of Christine Miller payments 2013-2017
Breakdown of James Roberts payments 2013-2017
Breakdown of Marianne Rochester payments 2013-2017
Breakdown of Ronald Salzetti payments 2013-2017
Breakdown of Matthew Siedhoff payments 2013-2017
Breakdown of Mallory Stuparich payments 2013-2017

Feel Good Fridays

Happy Friday!

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!

Blogs I updated this week:

Livia: A device that may help period cramps: I added a negative review of the Livia unit, written by one of our local EndoSisters, Kitty.

How much did your physician get paid?

Chart showing Top 10 physicians paid by Abbvie Inc in 2017
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:

Snapshot of OpenPaymentsData 2017 General Payments to Dr. Mel Kurtulus

And here’s the 2017 general payments breakdown for a popular Endometriosis physician down here in San Diego, Dr. Sanjay Agarwal:

Snapshot of OpenPaymentsData of 2017 General Payments to 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

An Update on my Insides

Various clocks, all showing 12:45pm

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:

  1. My left ovary is developing a cyst. Not just any cyst, but it’s either a hemorrhagic cyst… or (wait for it…) an endometrioma. Right now it is small, coming in at 1.5cm (a little over 1/2 an inch); and,
  2. Small abnormalities within my uterine wall may be signs of adenomyosis. This came as a surprise…but I let him know I was familiar with the condition as many of my EndoSisters had it as well. I’d done research and blogged about it back in 2016.

The plan? To remain positive – it’s a small enough cyst that doesn’t warrant any action (yet), I’m not in ANY pain, I’ll have a follow-up ultrasound in late July, and I’ll meet with Dr. Kurtulus in early August to discuss those results. I will continue tracking my diet, pain, and symptoms in the meantime. And if anything sparks up horribly before then, I’ll call for a consult.

We spent several minutes afterward discussing an upcoming event that we’re hosting together, as well as a few concerns about ultrasound and post-op procedures. The meeting ended in our usual smiles and hugs.

I think if I were in pain, being positive would be harder to maintain. But the only indication that I have anything wrong on the inside (or the possibility that my endometriosis is coming back) is my ultrasound. But will I need surgery in the future? Only time will tell. And will I miss out on future vacations, like Burning Man (a place lovingly referred to as Home, a week spent making amazing memories with friends)? I haven’t been able to return since 2015…and I miss it. Who knows. My best friend and other-love-of-my-life, Rosie, lifted my spirits yesterday with “…you are more Home for me than any place. We don’t need any destination.” So if I am robbed of another two weeks vacation in the future due to a need for another surgery, I won’t lament. I will make other plans with those that I love.

Forging lasting relationships with your medical providers and their staff can lead to amazing experiences and friendships. These people aren’t just my doctor, his nurses, or administrative staff. I consider them my friends. And we’re all in this together.

I don’t know how I got so lucky. I was randomly assigned this gynecologist by my Primary Care Provider back in 2013 because I moved to San Diego, had new insurance, and was in need of a pap smear. And I am so very, very, very grateful.

A friend, fellow EndoWarrior and Sister of our local support group sent me a study showing results of N-Acetylcysteine reducing the size of endometriomas in a small study group. So, I’m going to give it a try. She had previously received a “it can’t hurt” approval from Dr. K when she brought it up to him for herself, so I’m sticking to the study dosing, three times a day, and will see how it looks in July.

So, the plan is in motion. The appointments are on my calendar. And life goes on.

And jokes are always a good thing: “Your an ova-achiever” and “Stop growing so much stuff!” and “At least your left ovary is still working well” are all fun observations since yesterday. They all made me laugh. Still do.

Feel Good Fridays

Woman with eyes closed, smiling, and spinning in the falling leaves
Photo by Bruce Mars

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.

And smile.

I hope you have a wonderful weekend. Love, Lisa

All is well

Woman standing in towel showing stomach after laparoscopic surgery a week earlier; four incisions covered by bandages. Taken by Lisa Howard, July 2018
© Lisa Howard; 2018

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.

A positive spin on a painful situation

Maggie Flood selfie

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!

Endo Support for Moms, Dads, Partners, Family & Friends

Icons of computers, email, worldwide web

As a few of our attendees talked during our recent walk, it came out that they, as a supporter of someone with Endometriosis, would like a place to be able to continue conversations, ask questions, etc. with each other. Some don’t have Facebook, so we started a Google Group (which will allow you to correspond with each other either via email or a forum online).  Feel free to join:

If you’re a mom of an EndoWarrior and want to talk to other EndoMoms, please check out our new email-based Google Group, EndoMoms.

If you’re a dad of an EndoWarrior and want to talk to other EndoDads, please check out our new email-based Google Group, EndoDads.

If you’re a partner of an EndoWarrior and want to talk to other partners, please check out our new email-based Google Group, EndoPartners.

If you’re a supporter (friends or other family member) of an EndoWarrior and want to talk to other supporters, please check out our new email-based Google Group, EndoCircle

And if you’re an EndoWarrior, please feel free to either join our private Facebook group or our Google Group.

(This is all in the beginning stages…but it’s a baby step that needed to be taken)

And thanks to the Moms who got together and voiced this idea to me. ❤

Feel Good Fridays

A moment of feeling broken and betrayed while scrubbing the tub

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.

Love, Lisa