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.
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.
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.
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.
Again, I am so very, very, very grateful for an incredibly informative and uplifting evening.
Our friends at the Endometriosis Family Support Group will be hosting a free screening of the EndoWhat? documentary with a live chat room so participants can discuss the film as they watch it together!
Want to attend? It’s going to be on Thursday, May 30, 2019, at 6:00pm PST. You must register online to get access to the webinar. Register now before you forget!
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?
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.
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.