Sponsor Highlight: Special Flower Oil Co

Special Flower Oil Co logo

As you may know, we are hosting (along with the non-profit organization, Gifts 2 Help) our 2020 Endometriosis Awareness & Support Walk. This is the first year we’ve asked for sponsorships and today I’d like to honor Special Flower Oil Company.

You may remember I wrote about Special Flower Oil Company last year. Not only are Raul and Yuliya friends of mine, but they have created a small business to bring handmade, healthier products into our homes. And with a world of toxins, chemicals, parabens, and who knows what else out there may affect the growth of Endometriosis: I truly appreciate their products.

Not only will Special Flower Oil Company be sponsoring this year’s walk, but they’ll have a booth at the event! You can feel free to pick up some of their hanmade soaps, lotions, perfumes, and other wares!

AND? They’ll be donating a care package gift basket for our opportunity drawing!

Raul and Yuliya, thank you from the bottom of my heart. Not only for your support, but for the wonderful products you create. You’re a glowing beacon of generosity, friendship, and you genuinely care about helping others. ❤

Our walk will take place on March 28, 2020, in San Diego, California. It has traditionally been paid by out-of-pocket expenses, but has grown so large that donations and sponsorships are now a thing! I’m truly honored and super excited to be able to do this walk yet again.

If you would like more information to be able to attend our walk, registration is free (although we are asking for optional donations). Or if you, or someone you know, would be interested in either sponsoring the event or hosting a vendor booth, please contact me! These donations, vendor fees, and sponsorships go toward paying for the cost of the event. And are tax-deductible as a donation to Gifts 2 Help.

Sponsor Highlight: Erin Curlee

headshot of Erin Curlee

As you may know, we are hosting (along with the non-profit organization, Gifts 2 Help) our 2020 Endometriosis Awareness & Support Walk. This is the first year we’ve asked for sponsorships and today I’d like to honor our first sponsor, Erin Curlee.

Erin made an anonymous donation, which earned her a sponsorship title! She’s been a friend of mine for many years and has been so very supportive of my Endo journey, and the journeys of my EndoSisters. Although she doesn’t reside in San Diego, her presence is well-known in our group and her support is endless.

She’s been truly amazing. And her heartfelt donation took me by surprise and made me hug her all the harder.

Our walk will take place on March 28, 2020, in San Diego, California. It has traditionally been paid by out-of-pocket expenses, but has grown so large that donations and sponsorships are now a thing! I’m truly honored and super excited to be able to do this walk yet again.

If you would like more information to be able to attend our walk, registration is free (although we are asking for optional donations). Or if you, or someone you know, would be interested in either sponsoring the event or hosting a vendor booth, please contact me! These donations, vendor fees, and sponsorships go toward paying for the cost of the event. And are tax-deductible as a donation to Gifts 2 Help.

We’ve got a big announcement to make!

Breaking news announcement

It’s with great pleasure that I’d like to announce that Bloomin’ Uterus has partnered with the local San Diego-based non-profit, Gifts 2 Help, for 2020’s Endometriosis Awareness Walk.

Not only is Gifts 2 Help a local organization, but it’s run by a fellow EndoWarrior! Amy started Gifts 2 Help in honor of her mother who passed away in 2007 as a way to continue her legacy: helping those in need however she could.  Ongoing projects include an annual CHP Appreciation Day, EveryDay Heroes Appreciation Day, and Christmas Miracles.  There are many more projects that Amy would like to take on through Gifts 2 Help, and I was thrilled when she suggested helping with our annual walk.

Donations toward the costs of the walk (and expenses of any future events) will be tax-deductible!  All donations that Gifts 2 Help receives on behalf of Bloomin’ Uterus will go into a separate account, the funds to be exclusively used for our future walks, events, workshops, and projects!

Together, we’ve recently secured the City of San Diego permit for our March 28, 2020, Endometriosis Awareness Walk at NTC Park at Liberty Station!  So, it’s official!! Expect a registration page and details soon!  But please do mark the date on your calendars!

Thank you, Amy, for your passion to help others, even as you have your own battle to win.

Free Endo Webinar: Dr. Leslie Wakefield

Our good friends at the Endometriosis Family Support Group in Riverside at doing it again! Are you available to attend a webinar on Thursday, June 27, 2019, at 1:00pm (Pacific Standard Time). Join them for the free online webinar featuring Dr. Leslie Wakefield. Dr. Wakefield will be discussing how how physical therapy can treat Endometriosis symptoms.

Registration is free, but is required. So sign up today!

A huge thank you to the Endometriosis Family Support Group for all that they do!

SAVE THE DATE! 2020 Bloomin’ Uterus Endo Walk

2019 Bloomin' Uterus Endometriosis Awareness Walk
2019 Bloomin’ Uterus Endo Awareness & Support Walk; photo by Richard T. Reyes

Save the date!

The Worldwide EndoMarch announced Saturday, March 28, 2020 as the date for next year’s walk. And although we aren’t affiliated with their march, we do like to have it on the same day.

Solidarity!

So, save the date: Saturday, March 28, 2020

Further details to follow.

…let the planning begin!

An Evening with Dr. Kurtulus

Flyer for Living with Endometriosis presentation.

On June 5, 2019, the Marine Corps Community Exceptional Family Member’s Program hosted Dr. Mel Kurtulus of San Diego Women’s Health (my excision surgeon!) and I for a discussion about Endometriosis. I am so grateful to Dr. Kurtulus for setting aside time from his busy schedule, sharing his personal time with us, and to the members and crew of the Exceptional Family Member’s Program for allowing he and I this opportunity.

There were about a dozen folks who attended the nearly two-hour meeting at the Marine Corps Recruit Depot in San Diego. We all sat near one another, including Dr. Kurtulus, in a very casual and intimate learning experience.

Dr. Kurtulus began with an explanation about what is known about Endometriosis, covered a few theories of the illness, the various stages of the disease, and how it affects each woman differently.

A physician’s suspicion of Endometriosis may be raised by a complete medical and symptom history. A physical examination may take place, in which the doctor may feel scar tissue, abnormalities, or even nodules. An ultrasound may also be ordered, which could show the presence of cysts, Endometriomas, and misplaced ovaries (or other organs). These may further bolster a clinical diagnosis of Endometriosis. Some physicians may follow-up the ultrasound with an MRI, which may (or may not) further strengthen such suspicions. Those results, however, may be skewed because of the skill level of the radiologist; if they don’t know what they’re looking for Endometriosis-wise, the scans may appear normal. And…imaging studies don’t always indicate the presence of Endometriosis.

If a clinical diagnosis of Endometriosis is even remotely suspected by a physician, an exploratory laparoscopy should be conducted. It’s the ONLY way to receive a diagnosis.

But, as you very well may know, not all doctors are equally skilled. It is SO VERY IMPORTANT that we, as patients, do our research, due diligence, and everything we can to ensure we receive the BEST medical care we can. Unfortunately, we have to be our own advocates.

Although laparoscopy surgeries are considered far easier to recover from, a lot of surgeons around still do the ol’ laparotomy method. Tiny incisions versus a big ol’ incision? Think of the healing process and risk of infection differences. I know that, in some cases, a laparotomy may be medically required in extreme cases, but unless you’re one of those extreme cases: JUST SAY NO TO LAPAROTOMY. Why?

I took a little visit to the Wikipedia Time Machine this morning:

  • 1809: the first successful laparotomy was performed without anesthesia;
  • 1910: laparoscopy was first used on human subjects (on dogs in 1901);
  • 2000: the DaVinci robotic-assisted laparoscopy was approved by the FDA.

With the advancement of medicine and technology during the 210 years since the laparotomy was invented, why in the world would you choose a physician who ignored the laparoscopic or robotic-assisted laparoscopic methods? (Again, unless you specifically had an extreme medical case that required a laparotomy.) I’m forever going to imagine surgeons who elect to do laparotomy over the more modern surgeries available as wearing chaps and a cowboy hat.

And if you can, the benefits of a robotic-assisted laparoscopy may be what you seek: surgical tools with 360-degree articulation, the use of Firefly® Fluorescence Imaging, and the added bonus of insane magnification of the visual field. There are also exciting prospects on the horizon of using AR (augmented reality) and dyes during robotic-assisted surgeries to help surgeons visualize hard-to-spot areas of the body. Ask your doctors all the questions. Find one that does the method you prefer. I’ve only had robotic-assisted laparoscopies…so I cannot compare results. But I’ve been told by many people that my recoveries were faster and scars were much smaller.

Some surgeons only do ablation. Some do ablation and excision. Some only excise the lesions. Some say they excise when they, in fact, truly ablate. Excision surgery is considered the gold standard for treating the disease. Dr. Kurtulus drew some great visual aids for us, demonstrating the iceberg effect some Endometriosis lesions may present. He also shared video footage of a recent surgery where he excised both surface Endo and deep infiltrating Endo using the robotic-assisted DaVinci method. Again, ask your doctor questions. What techniques do they use and why?

Also, it’s important that you seek copies of your operation report AND pathology report. IF there is NO pathology report, question why! Does that mean they simply burned away the lesions and there was no physical lesion to send in to biopsy? Last night we learned that not all lesions ARE Endometriosis, and it’s important to know the results of the surgical pathology.

Surgery may not be an option you wish to pursue. Or it may not be something your body can handle. Now what? What other options are available to you? Well, your physician may try out various painkillers to see which may help you. Ibuprofen, Midol, Tylenol, Naproxen Sodium? Those don’t work? Your doctor may move up to others such as Vicodin, Percocet, Tramadol, etc. But with the opioid crisis…they may not. The pain pills may help…or may not.

They may have you try birth control pills, an IUD, implant, or depo provera. Stopping, or controlling, your periods may help with your symptoms. Then again, it may not. And there’s a likelihood of side effects.

Other pharmaceutical options may include Lupron Depot, Orilissa, Letrozole, Danazol, etc. GnRH agonists, GnRH antagonists, or other drugs that affect the body’s production of chemicals, or how they respond to estrogen, etc. – many of these have side effects that might be unbearable to some – and many may only be taken for a limited amount of time. And these medications may, or may not, help with your Endometriosis symptoms.

Many of us EndoSisters refer to medications as band-aid fixes. They mask symptoms. But sometimes ANY relief from your pain and symptoms is good relief. Every person is different; the choice is yours. Don’t be bullied into a decision by your doctor.

We also briefly discussed lifestyle changes and alternative medicine: an anti-inflammatory diet, acupuncture, pelvic floor therapy, meditation, pain management, CBD oils, etc. Find what works best for you. And the need for finding support, with any illness, was highly recommended.

The evening was brought to a close with the sound of Taps playing in the distance somewhere on the military base. Contact info was exchanged, as were hugs. And the promise to do this again sometime was made.

Here are some key points I took out of last night’s event:

  • Never be afraid to ask your physician/OBGYN/surgeon questions about their practice, techniques, and beliefs. 
  • If the surgeon only does laparotomy surgery (and you are not an extreme case that requires it), find another doctor. Find one who dose either laparoscopy or robotic-assisted laparoscopy. Without the extreme medical need, there is no reason to undergo the laparotomy procedure of literally the early-1800s…
  • If the surgeon only does ablation/cauterization/burn away the lesions: find another doctor.
  • If the surgeon usually only does ablation/cauterization/burn away the lesions, but will excise “for your case,”: find another doctor. They’re likely not skilled enough to properly and thoroughly remove all of your endo.
  • If your doctor insists you use drugs before they’ll even consider surgery (i.e, Lupron Depot, Orilissa, Letrozole, etc.), find a different doctor.
  • If your INSURANCE insists you use drugs before they’ll approve surgery (i.e, Lupron Depot, Orilissa, Letrozole, etc.), BUT your doctor wants to do surgery; ask your physician to push for a peer-to-peer review with the insurance company. Your doctor will have to justify why your surgery is medically necessary as opposed to treating with the medications. There may be a fight ahead.
  • Seek alternative treatments such as acupuncture, nutritionist consults, pelvic floor therapy, meditation, etc. Every little change we can do may affect our well-being.
  • It will be nearly impossible for the great surgeons to affect the medical community around them. Doctors are set in their ways; may lack the time to go to proper training; and may pursue more cost-effective/timely methods (ablation vs excision, etc). It is up to us, the patients, to research our physicians, find ones that are well-suited to our needs, and pursue our own proper care.
  • Track your pain and symptoms, and discuss those findings with your doctor. Bring a copy for them to review and keep; and a copy for yourself to review with them. Thoroughly cover all areas of concern.
  • Find support. Lean on one another. Ask questions. Share experiences. Know you’re not alone.

And most importantly? Each and every one of us has the power to influence those around us. Spread awareness. Share stories. Speak up about your illness. Fight for better care. Teach your doctors…some WILL learn. And learn from your doctors.

Cause ripples.

Again, I am so very, very, very grateful for an incredibly informative and uplifting evening.

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

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.