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

2019 Endometriosis Awareness Walk Recap

2019 Bloomin' Uterus Endometriosis Awareness Walk Group photo of 275 attendees
2019 Group Photo by Compass Media Productions; view the full rez by clicking on the photo

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:

Infographic re: Endometriosis by artist Sarah Soward
Infographic re: Endometriosis by artist Sarah Soward; photograph by Compass Media Productions
Infographic re: Endometriosis on a few San Diego Endo Sisters by Bloomin' Uterus
Infographic re: Endometriosis on a few San Diego Endo Sisters by Bloomin’ Uterus (from 2018); photograph by Compass Media Productions

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.

FUNDRAISING

We had two running campaigns this year: 1) fundraising for the Endometriosis Foundation of America and 2) fundraising for the expenses of the walk.

This year we raised $1,771.63 for the Endometriosis Foundation of America! These funds came from online donations, button sales, bracelet sales, t-shirt sales, and the fundraising efforts of Tanya Linda and the San Diego Sisters of Perpetual Indulgence! That’s way over our 2019 goal of $1,000! THANK YOU!

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

Sister Donatella Soul of the San Diego Sisters of Perpetual Indulgence
The beautiful Sister Donatella Soul; photograph by Compass Media Productions

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.

Certificate naming Angel Anne Doe, Keeper of the Flowering Chalice of Power

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 T. Reyes:

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.

Compass Media Productions:

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.

Prizes

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.

Our Bingo card! Photo by Richard T. Reyes

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.

Lisa Howard holding up Liva unit for Bingo prize
Bingo prizes! Photography by Compass Media Productions

Volunteers

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.

Memories

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.
  • Group picture.
  • Meeting all my endo sisters and seeing all the amazing supporters we had there.
  • Hugging my sisters!
  • Lisa’s tutu!!! So fluffy & squishy.
  • The walk.
  • Lisa getting Angel wings!
  • The whole thing from beginning to end!!
  • Supporting.
  • 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.
  • Donatella’s speech.
  • Opening remarks.
  • 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!!
  • The walk.

We look forward to many more memories ahead.

Snafus

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!

  1. 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!
  2. 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.
  3. 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?!?!)
  4. 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.

What’s next?

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.

See you in 2020!

EndoWhat? A Free Screening

Flyer for EndoWhat screening in San Diego on March 16, 2019

Do you have Endometriosis or know someone who does?  Or maybe you think you may it?  

Join us for a free screening of the EndoWhat documentary in San Diego, followed by a Q&A panel hosted by Dr. Sally  Rafie of The Pharmacists Clinic, Sister Donatella Soul of the San Diego Sisters of Perpetual Indulgence, and Lisa Howard of Bloomin’ Uterus.

Come to meet other EndoWarriors, like yourself.  Bring your friends and family and educate them about our illness.  Empower yourself and educate others.  Together we can do great things!

Seating is limited to 250 people, so please reserve your tickets today.  

Tickets available at EventBrite.

March 16, 2019; the screening will begin at 1:00p.m. UC San Diego Skaggs School of Pharmacy & Pharmaceutical Sciences; HSEC Auditorium; 9500 Gilman Drive; La Jolla, CA 92093. There will be free parking on the campus.

**

Endometriosis or “endo” is the most common, devastating disease that most people have never heard of. It affects 1 in 10 girls and women. That’s approximately 176,000,000 people on the planet.

Despite its prevalence, women see an average of 8 doctors for 10 years before diagnosis. During that time, many are forced to miss school, leave careers they love, abandon dreams of having children and watch their personal relationships suffer. They’re often told incorrectly by doctors that pregnancy & hysterectomy are cures and that pain is normal or in their heads. After diagnosis, they’re usually prescribed an array of drugs & undergo multiple, ineffective surgeries.

It’s time to break that cycle. It’s time for a new normal that doesn’t mean multiple doctors, drugs, surgeries, misdiagnoses and years of pain. The only film of its kind, Endo What? gives an accurate, up-to-date base of knowledge straight from the experts.

It’s a film to educate & put power where it belongs – in the hands of girls & women.

**

Where: UC San Diego Skaggs School of Pharmacy and Pharmaceutical Sciences; HSEC Auditorium; 9500 Gilman Drive; La Jolla, CA 92093. Follow the stairs outside the building down to the lower level.

Exterior of building of Skaggs School of Pharmacy at UCSD campus

Parking: There will be free parking available at the parking structure in the blue-highlighted area:

Map of where to park for screening at UCSD campus

I’d like to extend a HUGE thank you to Dr. Sally Rafie and Sister Donatella Soul for all of their hard work in helping me bring this event to the San Diego community.

**

We hope that you can join us!

An addition to my Endo Tattoo

Me receiving tattoo on upper backside of left arm near armpit

Many of you already know I have a large tattoo on my left shoulder, which represents my journey after I was diagnosed with Endometriosis in 2014.  And many of you also know that each time I have a surgery because of Endometriosis, I add a blood droplet to that tattoo.  And each time, my best friend and Seester (Rosie) comes to be with me during the tattoo session.

So, this year I not only wanted to add another blood drop but I felt a need to somehow honor my sterility since my fallopian tubes were removed, and with them any chance or choice of continuing our family line.

Knowing I’ll never give him a son or daughter, knowing we’ll never hold them in our arms, change diapers, watch them grow up, all the glorified things that my heart aches for.  About a year ago, Jim and I shot a film project for a friend of ours.  We were parents of a beautiful infant girl, Emily.  And while we weren’t filming, he continued to hold her and just seeing him rock her in his arms, coo at her, smile when she made cute bubbly baby noises, smell her head – it filled me to the brim with warm feel-goods.

Although both my husband and I have wanted children at some point during our lives (or shall I say our prior-to-meeting-each-other lives), we no longer felt like we did at our age (I’m pushing 40, he’s pushing 50).  So why couldn’t I stop sobbing?  During my grieving process, I tried to better understand why I was so very upset. Lots of soul searching led me to a conclusion.

Yes, the chance to procreate and to hold our own child in our arms was now gone.  We could adopt, but as I stated above, we truly did not want children at our age.  But if one happened by mistake…we both would have been so happy.  Wait…I’m digressing once more. I already covered that.

So, where was I?  Yes, my sterility.  The choice to remove my fallopian tubes was made prior to my laparoscopy.  If it even remotely had any chance of ceasing the progression of Endometriosis, let’s do it (yeah, yeah, I know – retrograde menstruation is a sneered-upon theory, but it’s worth a shot).  And even if the decision hadn’t already have been made, my fallopian tubes would have been removed during surgery anyway because of the state they were in.  But…they are gone.  My uterus is a now a sealed tomb that will still continue to shed and bleed and remind me each month that it, at least, is still there and functioning.

Wait…I digressed again.  Obviously, I’m still dealing.  Back to the tattoo…

I wanted something that represented not only my sterility, the end of our bloodline (well, I have brothers, a niece, and a nephew, but I mean the direct bloodline of myself and my husband), and my coming to terms with it, but truly accepting the fact that my illness has robbed me of something I did want so many moons ago…

And suddenly it came to me.  I wanted a lit candle, burnt almost to the point of extinction.  Smoldering.   If you’ve followed my previous tattoo posts, you may remember that my artist’s name was Will Novotny.  Sadly, he passed away last year…I’ve been his client since 2009 and no only had the pleasure of being his client, but of becoming his friend.  And now my choice of tattoo had an even greater meaning: not only am I expressing my sterility and acceptance, but I am also lighting a candle in memory of Will…directly adjacent to the last tattoo he inked onto me.

I wrote my friend, Mia, who is a tattoo artist here in San Diego at the Jade Buddha Tattoo studio and explained what I had in mind.

Mia added the suggestion of the candle being held in the palm of a hand, wax dripping.  Then she expanded on that thought: have it held in my hand.  Our waning existence, mortality slipping between my fingers, and me grasping and accepting that very concept.  It was brilliant.

Then the creative process took off!   Not only did I love the journey, but it was so therapeutic talking about it.  And a HUGE thank you to Rosie for being there to comfort me during the painful 4.5-hour session.  And to Mia for her friendship, understanding, and talent!  This piece means SO very much to me.  It’s incredibly beautiful, seamlessly wound into my existing Endo tattoo, and it’s amazing!  I want to cry even just typing about its meaning and yesterday’s wonderful experience.  Oh, and if you can’t find it, the third blood drop is lingering at the bottom of one of the pieces of dripping wax.

Mia tattooing my underarm
A smidge of humor 😛

Some photos! You can click on a thumbnail, and click once more on the image it opens and it will open a full-size version.

And here’s a few videos trying to better show the entirety of the piece!  Neither the photos or videos do it justice!

(don’t mind the little peeling flecks all over the tattoo haha)

oh…and if you’ve made it all the way to the bottom…here’s my favorite photo taken during the session!  God, this piece hurt so much. So worth it!

Close up of tattoo in progress; covered in blood

If you’re in San Diego, I highly recommend Mia at the Jade Buddha Tattoo!!!

EndoBelly: Before & After Pictures

One of our local San Diego EndoSisters, Michelle, had a flair-up of EndoBelly yesterday afternoon.  If you suffer from these, you know what we’re talking about.  If you’re not sure what it is, I tend to think it’s the disease inside my body inflaming and rearing its ugly head.  The bloat is severe.  The pain is thick.  The skin is stretched to an extreme.  The pants must come unbuttoned.  People would ask “When’s the baby due,” having NO idea I wasn’t pregnant.  When it happens, I must pop a pain pill and find comfort in a bed and a heating pad.  And, for me, it can pass after a few hours or a few days.

But what a difference a day makes.  Michelle granted me permission to share her image here.

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On the left (in the red) is yesterday’s EndoBelly in all it’s swollen glory.  And on the right (in the black)  is today’s deflated and back-to-normal belly.

What a difference a day makes!  And these before & after photographs bring a visible sense to an invisible illness.  Thank you, Michelle, for allowing me to share your photograph.  And your pain.  Love you, woman.

Do you suffer from EndoBelly? Tell us about it in the comments below.  Anything help you cope ’til the swelling subsides? Share away!

Share Your Story: Michelle

Photo of Michelle

Michelle was diagnosed with Endometriosis when 20.  Now 35, and living in La Mesa, California, Michelle shares her Endo story with us.

Michelle’s Journey: My endo story I first got my period at 10 years old. I remember I was still in elementary school, playing in PE when I got my first one. From there, my periods became increasingly more and more painful.

By 15 years old I remember rolling around on the ground in the bathroom, sometimes in so much pain that it made me throw up. I would miss school sometimes but most of the time tried to tough it out. My periods were always at least 7 days long, super heavy and lots of huge clots. I thought that was normal…..I was taught to believe this was all normal.

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Our 2018 Endometriosis Awareness & Support Walk

2018 group picture
Photo by Exxes Fritz Hauffen

Oh man!  I cannot tell you how wonderfully excited I am after this weekend’s walk!

It was the 4th Annual Bloomin’ Uterus Awareness & Support Walk in San Diego and it was our largest one yet!  Out of 150 registered walkers, 120 people joined us.  It was awesome! Thank you, everyone, who attended!

This year, we raised $1,317.90 for the Endometriosis Foundation of America, totaling $7,065.44 raised since 2014.  A HUGE thank you to everyone who donated or purchased t-shirts!  We were able to once again surpass our fundraising goal!  And due to an incredible donation by my employers, we were able to hand out free Bloomin’ Uterus buttons to everyone!  I’m just flabbergasted!

This is my fourth year hosting our walk.  When I received my diagnosis, there was nothing in San Diego and I needed something.  Absolutely needed it.  Does that need ever diminish?  I must say: nope.  Being able to be around EndoSisters who understand, to be able to hug their friends and family and thank them for their support, and to watch other EndoSisters meet and interact: it’s awesome.  And it really drives home that the need to be around people who get it…around people who aren’t judgmental…is critical to our mental well-being.  Well, mine at least.  And we even met a few people along our route that had Endometriosis and will join us next year!

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All of us EndoSisters; photo courtesy of Timbrely Pearsley
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And each of our friends & family who support us <3; photo courtesy of Timbrely Pearsley

I’m still floating on Cloud 9.

Prior to the walk, 34 EndoSisters completed a survey about their Endometriosis.  This sign was displayed at our check-in desk; a way of affirming that we truly aren’t alone in our fight.

Percentage Breakdown 24x36 copy

The little pie chart in the center is asking if surgery (whether it be excision, ablation, or hysterectomy) helped with their Endo symptoms and pain.  The responses were:

1 – It’s worse than before

1 – No Endo was removed during surgery

5 – Yes

10 – No

17 – It did for a while

And my favorite part?  We’ve all been told that Endometriosis developing on the spine is “incredibly rare”…yet three, yes THREE, of the 34 women who answered this survey have a confirmed diagnosis of Endometriosis on their spines.  Talk about embracing the fact that you aren’t alone!

You can see all of the photographs and video shared by our attendees here.

This year, seven of us delivered a speech together.  There’s video out there of the speech (filmed by the wonderful Alyssa Menard):

If you can’t hear passed our sniffles and snorts and giggles and airplanes flying overhead, our words are below.  I wanted to send a loving thank you to those brave women who volunteered to speak with me:

Lisa:  Thank you, everyone, for coming today. I cannot express enough how much it means to me…to each of us.  Can I have all of my EndoSisters join me over here? Many of us were not taken seriously when we would discuss our pain.  It may have been dismissed, we were called fakers or weak, or told that it was all in our heads. We’ve heard “Nothing is wrong” or “Pop an Advil”  or my personal favorite, “Periods aren’t that bad. Suck it up.” Words like this, treatment like this, is demeaning to an already crushed soul. I gave up.  I figured it was normal. And that I was weak, crazy, or just cursed.

Mirna:  Our pain has a name: Endometriosis.  We aren’t crazy, we aren’t weak, and we aren’t faking.  But even with a diagnosis, sometimes our pain still isn’t taken seriously and we are dismissed or judged by the medical community, employers, coworkers, friends, or even family.

Jessica:  We are here today to change that.  1 in 10 women suffer, but here we are walking side by side, a mighty force of Warriors.  Warriors with an ultimatum to Endo: we will overcome!! We will not be beat. And we are not alone.  We may have days where we are forced down, stuck in bed, or in agony as we go about our day…but we will rise again.  And we stand with the help of our Sisters, our family, and our friends.

Kelly:  Endo just doesn’t cause physical pain.  Sometimes we feel like an incomplete woman, robbed of so many dreams.  And some of us can be jealous of those who have children, don’t have to carry a small pharmacy around in their purse, or can live a fulfilling and active life.  But this community that we’ve built together personally helps me cope with the physical and mental downers. Someone, maybe even you, has been there to support me when I needed it.  And here we are today, lifting each other up. This is what we are all about. We are Sisters. We are family. When you go home, please don’t let this energy that you’re feeling die.

Gloria:  Friends and family, please listen when we tell you that we are hurting, or we can’t go do something because of a flare-up; don’t judge or criticize us or think we’re lying.  Continue to offer that compassion and support I know you all have within you.

Meghan:  And to my EndoSisters, stay strong, be there for one another, and don’t be afraid to self-advocate.  Push your physicians to do their research to better understand how best to handle our illness. And if you don’t agree with their opinions or tactics, find another doctor.  There are great ones out there.

Melinda:  One day there will be a better understanding of this illness; of this enemy we all fight together.  But until that day, let us hold our heads high and march on. I am grateful for each of you. We are grateful for you.  Thank you.

**

I am so excited and looking forward to next year.  If you’re interested in joining us for 2019, stay tuned!

And remember, we are all incredibly strong and powerful. And we can stand up to Endo…Together!

If you would like to read about our prior walks, here’s the information:  2017 Endo Walk at Shelter Island, 2016 Endo Walk at Lake Miramar, and 2015  Endo Walk at Lake Miramar.

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A SUPER EndoSister, Toni. Photo by Exxes Fritz Hauffen