Feel Good Fridays

A 1903 engraving of Joan of Arc by Albert Lynch featured in the Figaro Illustre magazine

A 1903 engraving of Joan of Arc by Albert Lynch featured in the Figaro Illustre magazine

I hope you all had a wonderful week! Mine has had wonderful ups and laughable downs, but here we sit at the end of the week! Happy Friday!!!

Today I’m inspired by the tenacity of my fellow EndoWarriors. Women who have been handed a nasty hand of cards, yet continue to move forward, stand tall, and are not afraid to reach out for help or comfort when needed. Even on the downer days, wrapped up in a heating pad, popping pain medications, rubbin’ on CBD oil, or crying in a ball on the floor: that inner strength remains.

We lift one another up. Hold each other when we’re down. Fight for one another when the cause arises. We are a sisterhood. An army. A mighty force. We are incredible. And moreso with the bonds we’ve forged.

“Behind her gentle character, the strength of armor was found.”
― Erin Forbes, Fire & Ice: The Kindred Woods

Whatever sort of week or day you’re having, know that you ARE a mighty Warrior. And you have the support of those around you.

Stand tall, Sisters, and consider yourself hugged.

Love, Lisa

Blogs I updated this week:

C-Sections & Endometriosis: Added a March 2018 study of a 35-year-old woman with c-section Endo; added a February 2019 study of 8 cases of Endometriosis developing in c-section scars; and added a February 2019 study of 2 women with c-section scar Endo.

Dungeons & Dragons & Donuts: Added our January 20, 2019, adventure (Sorry we’re a little behind…). Find out how tabletop gaming can help people deal with a chronic illness, forge friendships, and disappear into a fantasy realm for a few hours once a month.

Endometriosis & the Lungs: Added a May 2019 publication of a woman who suffered from recurrent collapsed lungs NOT during her period; yet received a surgical diagnosis of thoracic endometriosis. Your symptoms do NOT have to coincide with your period. Also added another May 2019 publication of a woman who suffered repeat collapsed lungs during her period.

Endometriosis & Wine: Added a Feb. 2019 study about resveratrol and its possible anti-inflammatory benefits for fighting Endometriosis.

Endometriosis Workshop in San Diego

Living with Endometriosis flyer for June 5, 2019 workshop in San Diego

Do you live in the San Diego area?  Are you active or retired military or a dependent of someone who is? And do you want to learn about Endometriosis, treatment options, and how to cope with the disease? 

Join us for an evening with Dr. Mel Kurtulus of San Diego Women’s Health (my excision surgeon!) as he speaks about Endometriosis to the Marine Corps Community Exceptional Family Member’s Program on Wednesday, June 5th at 6:00pm at the Marine Corps Recruitment Depot in San Diego, CA.  I’ll also be talking for a few minutes about our support group, our events, the family we’ve created, and how you can join us.

All military and their families are invited.  Due to the location of this event, it is restricted to active/retired military and their families only. 

Call 619-524-0916 or email ombfamilycaresd@usmc-mccs.org to RSVP.

Date: Wednesday, June 5, 2019
Time: 1800-1930
Location: MCRD San Diego, Building 6E Classroom
3602 Hochmuth Ave.,
San Diego, CA 92140

My First Mammogram

Mammogram machine
Image by Elías Alarcón from Pixabay

Soooo…I’m 40 now. And for my birthday, my gyno had me run to get a mammogram. My baseline mammo. My first. Ever. I’ve had an aunty diagnosed with boob cancer, so I take my boob-health very seriously.

All I’ve ever heard were horror stories of pain and discomfort and smashed-thin tatas. “Take an Ibuprofen about an hour before the appointment,” I’d heard from various well-experienced womenfolk of mine.

Did I? No. I completely forgot…Crap.

So how was it?!?

I checked in about 20 minutes early and was given a wrist band with my identifying info (which I forgot I was wearing ’til 9:00 that night). I was then escorted to a room with a wall of lockers and an opposite wall of dressing rooms, asked to disrobe from the waist up, and to put on a thin (yet comfy) bathrobe. My sweater and bra were locked safely away in a locker (the key was secured to a bracelet around my other wrist) and I was asked to wait in a lobby nearby. There I sat for another 30 minutes with various gals of various ages, all of us wearing bathrobes, and either reading magazines or perusing smartphones. “For the comfort of our patients, no gentleman allowed” read a nearby sign. It made me smile.

“Lisa?” My name was called by a short, portly woman and she explained she was my mammogram technician and walked me to another room…where I saw a machine similar to the one pictured above. Okay…I don’t know what I expected, but not that. While she explained the procedure, and calmed my fears of “is it going to hurt much?” I tuned out and just wondered where my boobs went on the machine: On the black surface? In the little plastic basket? WHERE? What’s the clear window for? Well…I learned quite quickly:

If you’ve never had one before, here’s what to expect (at least what my experience was):

  1. Pop your right arm out of the bathrobe, so that the right half of your torso is exposed;
  2. Stand facing the machine.
  3. The technician will adjust the machine to place the black tray at your under-boob height.
  4. Here’s where it got fun. The technician moves your body around a bit so you’re positioned on the black tray with the right boob. The clear shield? “Turn your face toward me and push your face up against the shield.” The right side of my face smashed flat against the plexiglass window and she fondled my boob into place. If you’ve ever photocopied your face before…you know the feeling (well, maybe not of the technician placing your boob at the correct angle)…My first thought? “Oh, her hands are WARM!” The next thought? The black surface of the machine was ALSO warm. Perfect.
  5. “Don’t move.” The technician left me there, in an awkward pose, as she stepped behind their protective computer wall thingy. “Breathe like normal,” she called, while the machine made a few noises, gently smooshed my boob, and it snapped a few images. “Take a deep breath and hold it,” she called out as the machine snapped a few more images. “Aaaand…breathe.” All the while, a fancy-schmancy portion of the machine spun above my stationary boob and took the images. Was kind of soothing to watch as I waited for the tech to finish.
  6. (IT DIDN’T HURT AT ALL)…
  7. I repeat, IT DIDN’T HURT AT ALL! “Um, was that it?” I asked. “Wearing my bra is more uncomfortable than that…” The only discomfort I had from the machine was where my ribcage met the black surface- an unfamiliar pressure as I leaned up against the edge of the boobsmoosher machine.
  8. Wash, rinse, and repeat for the left boob. Again, no pain.
  9. The actual mammogram portion took less than 10 minutes…maybe even closer to 5 minutes.

And that’s it! She advised me that the radiologist would look at the images that afternoon and I would be receiving a letter in the mail in 7-10 business days.

I nearly shouted in excitement how it didn’t hurt one bit and there was so much hype that I was ready for catastrophic pain. She shrugged, smiled, and said “It’s never hurt me either.”

My theory? I either got a REALLY gentle machine that cared about the well-being of my boobs, or a technician who placed them super-carefully, or my boobs are less sensitive than other women, or small tatas hurt far less than big boobs on the smoosh-machine.

My mum had me look into the mammograms they do these days where you don’t have to get smooshed. I called around; my insurance only covers the smashable boob machines. A few non-smashable mammograms are available in San Diego, but only for women who have been diagnosed with aggressive boob cancer and need extra special eyes and images.

The tech advised me that mammograms are a yearly occurrence. Do I look forward to doing it again in a year? Sure, why not? I get to wear a comfy robe, stare at my phone for a while, and have warm hands on my tits. Going to the pap smear is far more uncomfortable for me than a mammo. And the hour-long wait in traffic to get home was even more painful.

Oh…and a word of advice: if you do schedule your mammogram set it for the warmer months! She said in the winter the machine surface doesn’t retain heat and it’s REALLY COLD. So, I’ll be doing mine in the spring/summer months in the future!

And next year? Next year I get to have my first colonoscopy…stay tuned!!!

I hope you’ve having a GREAT day! If you’ve had a mammogram, I’d LOVE to hear your thoughts! What made it particularly awful or great? Drop me a comment below or shoot me a note. And here’s to hoping my experience dulls some fears if you’ve got an upcoming first boob-smoosh appointment.

Free Pelvic Floor Therapy Workshop

Free pelvic floor therapy workshop flyer

Free workshop on endometriosis and pelvic floor dysfunction – how do they relate and why should you include a pelvic floor PT in your team?

Saturday, June 22, 2019, from 2:15pm – 4:15pm at the Mission Valley Library’s Community Room; 2123 Fenton Parkway in San Diego, California.

At this workshop, Jandra Mueller, DPT, of Synchronicity Physical Therapy will be discussing the role that the physical therapy plays – or should be playing – in your care. Jandra will discuss what the pelvic floor is, its functions, as well as treatments that may also benefit women suffering from endometriosis such as painful intercourse, “interstitial cystitis,” irritable bowel syndrome “IBS,” and small intestinal bacterial overgrowth “SIBO,” as well as the importance and tools to regulate the central nervous system. Jandra would also like to answer any questions you all may have regarding pelvic floor physical therapy! She has been working with women with endometriosis for the past several years and has also been one of the many women to suffer from this disease, so she understands firsthand how frustrating this condition can be! Please come join us on June 22nd for this exciting event!

Seating is limited, so please reserve your spot today.

We here at Bloomin’ Uterus are VERY excited to be able to help bring this event to San Diego. Jandra is an incredible EndoWarrior and friend.

Free tickets are available on Eventbrite. You can also feel free to RSVP on Facebook, but please secure a seat via Eventbrite. We are limited to 100 seats. If you do not wish to register via Eventbrite or Facebook, please contact me and I’ll put your name on the list of attendees.

And to those that cannot attend, we will *try* to videotape it and share the link.

April 2019 Pain Journal

April 2019 pain summary

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…

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.

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. ❤