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?
My good friend Exxes Hauffen owns Compass Media Productions. One day he asked me, “What’s all this uterus business about?” – regarding all of my Facebook posts. So, I told him about Endometriosis and his next question was, “How can I help?”
Thus the beginnings of “Stronger Than Endo.”
A few local San Diegan Endo Sisters volunteered to share their stories and struggles. Exxes focused more on the emotional and quality-of-life aspects of the illness, rather than the physical symptoms that we are already so aware of.
What you watch today is the end result of months of hard work. I am honored by the voice Exxes has granted us.
Exxes, thank you for your endless hours of dedication, for the passion that burned so brightly within you during the interviews, your hunger for knowledge, and your undying desire to bring awareness to this disease.
To Dr. Kurtulus, thank you for dedicating an afternoon of your time to this project, for your endless compassion and drive to give each EndoSister a greater chance at normalcy, and for giving me my life back. Your passion is evident every time I see you. And your “approachableness” is one of my favorite qualities you possess. You’re incredible; not just as a physician, but as a human being.
To Heidi, Merritt, and Zeiddy, I will never be able to thank you Brave Warriors enough. Not only for opening up your hearts to the world but for your ongoing support and love you have for other EndoSisters, even while you endure your own Battles.
This is truly a labor of love. Exxes filmed, edited, and produced this documentary free of charge. Dr. Kurtulus was not compensated for his time. And neither were myself or the interviewed EndoSisters. We hope that you enjoy, embrace, and share this video.
Without further ado, I give you “Stronger Than Endo”:
The full interviews with each EndoSister and Dr. Kurtulus will be made available shortly and shared separately.
And Exxes isn’t done yet. He’d like to continue interviewing EndoSisters and sharing our Journeys.
A note: The views and opinions expressed in this video are purely that: opinions. We understand that there are several theories as to the cause of Endometriosis, as well as the treatments. No one theory is correct. And we honor all opinions.
On July 18, 2018, I underwent my third robotic-assisted laparoscopic excision of Endometriosis by Dr. Mel Kurtulus ( of San Diego Womens Health). As always, I love to share my experiences with you – not only to create awareness of this illness, but in the hopes that the process of my surgery (and later recovery) may help you, or others.
Before I go on, I just want to take a moment to express my joy in the above-photograph. I am a detached head, floating beneath a fluffy warm-air blanket in the pre-op area, enjoying a wonderful moment with an incredible surgeon and man. Thank you, Brandy, for capturing this. And thank you, Dr. Kurtulus, for being so marvelous!
Okay, on with the nitty-gritty!
My mom, husband, and I were awake at 6am and in the hospital by 8am to check-in. If you’ve never been to the Scripps Hospital La Jolla, it’s glorious. Every attention to detail and the efforts of the staff are meant to soothe and calm: beautiful artwork, a live piano player in the lobby, and compassionate staff. It’s wonderful. We were joined by a wonderful friend and fellow EndoSister, Brandy, to document the experience (these photographs will be shared at a later date…I’m so excited about what she is doing!) I was rolled back for pre-op somewhere around 11:30 and wheeled back to the OR by noon. My surgery took approximately four hours. And here I was worried he wouldn’t find any Endometriosis…(I should know better…) We arrived home around 7:00pm. A very, very long day for my friends and loved ones.
The plan was to open me up and peek under the hood, so to speak. If any Endometriosis was discovered, Dr. Kurtulus would excise it; any adhesions would be freed; the ovarian cysts that were seen in ultrasounds would be removed; my ureters would be examined and freed of any adhesions; he’d look inside my bladder for any Endo or evidence of Interstitial Cystitis; and he would (with my willing and educated permission) remove both of my Fallopian tubes.
What did he find? Following is a page of my op report, in case you enjoy reading all of the medical terminology (like I do). I’ll also further explain what I understand and share photographs below!
In a nutshell? I had:
I was laid on a table, strapped in, and tilted somewhat upside-down. Then a tiny hole was punched in my belly, 3 liters of CO2 gas was pumped in and I was inflated, and the doc took a peek around. Three additional ports were added (tiny incisions) so tools and the robotic arms (tiny!) could be inserted. On with the discovery:
A cyst on my right ovary;
A cyst on my left ovary;
Endometriosis on my cul de sac, small intestine, near my sigmoid colon, and on my left ovary and fallopian tube;
My fallopian tubes were hideous, “angry”, inflamed, swollen;
Adhesions on/near my sigmoid colon, my bladder, my fallopian tubes;
My sigmoid colon was stuck to the left side of my pelvis;
My bladder was pinned to my uterus;
My left ureter was surgically detached to allow safe access to Endometriosis lesions on my left ovary, then reattached once all-clear;
And (hooray!!!) NO evidence of Endometriosis was found on my liver or diaphragm (discovered there in prior surgeries).
During my post-op meeting, Dr. Kurtulus let me know that this time my Endometriosis lesions were all either clear or red. He said they were almost grape-like. I’m so pleased that he is so skilled and thorough during these procedures!! And grateful he knows what to look for!
Ready for photos of my insides? I don’t know if you can click on the photos and make them full-size, so they’re also available on Google Drive.
The Fallopian Tubes
My Mum told me that when Dr. Kurtulus showed she and my husband the photographs after the procedure, he said my fallopian tubes were “angry” and swollen. That description will stick with her for quite a while, especially when she saw the photographs. I am so glad we had already discussed removing my fallopian tubes before my procedure; as he likely would have removed them due to their massive state.
I had a 3cm cyst on my right ovary, which he removed while saving my ovary. Also, a cyst and Endometriosis lesions on my left ovary, which he excised (still saving my left ovary).
My husband and I don’t want children at our age, but it doesn’t make the medical sterility any easier to bear. I have grieved and mourned and cried and sobbed. I am feeling much better now (although sometimes it still hits hard) after talking about it with friends and family and I wanted to share some incredible words from a few friends that they shared to comfort me:
“You may no longer have fallopian tubes, but you got one of the biggest pair of brass balls I’ve seen.” ~Barbara Carrera
“It’s a good thing to have the diseased bits out of the way. And now you don’t have to worry about condoms. And it’s fun to imagine your ovaries as crazy, free-floating googley-eyes! They’ve been unleashed!! Fly my pretties! Fly!!” ~Sarah Mew
Thank you, ladies. I needed those laughs. ❤
The cul de sac (aka Pouch of Douglas)
This is my third surgery and during both of my prior surgeries, I had Endometriosis in my cul de sac. To quote both of my first two op reports, my cul de sac was “obliterated.” What the heck is a cul de sac? It’s the little empty space between the back of the uterus and the rectum. It’s usually very common for Endometriosis patients to have lesions in this area. This time, most of my Endo was on the left side, rather than everywhere in that little pouch. And, Dr. Kurtulus excised all that he saw.
I’m flabbergasted at the difference!!! But, here are more photos of what my cul de sac looked like before I was all tidied up:
The Small Bowel
Two lesions were discovered on my bowel. Dr. Kurtulus brought in a colo-rectal surgeon to look at the lesions to determine if they could be removed superficially or if something greater would be required. The colo-rectal surgeon confirmed the spots looked like Endometriosis, but I would require a resection of that bit of small intestine. It’s close to my appendix, on the right side. (Update: I had my 4th excision surgery in November of 2018 to remove this Endo and a bowel resection.)
The Bladder and Uterus
When I saw the photographs of my bladder being pinned to my uterus and held in place by a literal web of adhesions, I was amazed! AMAZED! I’d been having pain often when I peed and wonder if it was related to anything-Endo. So Dr. Kurtulus freed my bladder (he’s my hero!). He also looked extensively at the inside and outside of my bladder and found no evidence of Endometriosis or Interstitial Cystitis (aka IC).
The Cost of it All!
As usual, I LOVE to share what this type of surgery costs. And, to date, this was the most expensive for my insurance company! I paid a $500 co-pay to the hospital and my insurance covered a whopping $121,669.50! Holy moly!!! I’m still waiting to see if the colo-rectal surgeon will submit a separate bill for his time, as it wasn’t itemized on my Estimate of Benefits form. Other than that, there shouldn’t be any sneak attack bills…I hope. If you’re curious what my first and second surgeries cost, I’ve blogged about that, too!
I had my post-op appointment with Dr. Kurtulus on August 6th. He spent some time with me going through the details, labeling the photographs, and talking about our future plans. Did we pick curtains or china patterns? No. We covered prospective treatments! I’ll see him again for an 8-week follow-up in mid-September.
He brought up birth control and remembered I don’t want to take it as I feel it truly makes me a different person. Then he mentioned Lupron Depot and Orilissa, but acknowledged (before I could say anything), that he knew I didn’t want to take those. So, he wonderfully respected my opinions and desires; didn’t push anything. Didn’t make me feel like I was a “hostile patient” or making poor choices. And he supports my desire to strive toward an anti-inflammatory diet, keep a positive attitude, and pursue the bowel resection surgery as soon as I am able.
The Recovery Process
I fully intend to fully blog about my 2-week recovery and share my notes soon. But I wanted to also mention it briefly here. It wasn’t easy at times, but mostly it wasn’t hard.
My pre-op Endometriosis pain is 99% gone! Just a little bit of “ugh” near the lower-right edge of my abdomen…and I may either just be healing or it’s the last bit of Endo clinging to my bowel waving at me. I was even on my period! And it was so pain-free that it was a Sneak Attack period and caught me by surprise (the poor bed sheets).
The first week was a whole lot of paying attention to my body, small little walks, a mostly-liquid diet, lots of lounging on the couch-bed and watching Netflix. There was the expected post-op pain the first day, a vomit on Day One (whoever wants to do that so soon after abdominal surgery?), sleepless nights, and difficulties getting comfortable. And those first few days of hardly any sleep wasn’t easy on my husband or mother, who had to help me get in and out of bed multiple times throughout the night.
The second week I felt far more capable, although I didn’t do much of anything other rest and be lazy. And I returned to work on August 6th.
I had very little shoulder pain related to the CO2 gas and I blame that on my surgical team’s skill in deflating me as much as possible and getting out as much gas as they could! I did have a few episodes of that pain, but nothing in comparison to my first surgery.
It took three days to poop. The discomfort was so great that I opted for an enema. That is a tale in and of itself; one you shall never read about!!
My body is still healing: sitting too long causes discomfort; stairs are from the Devil; and I don’t allow myself to squeeze out a poo – if I have to do more than just a gentle push, it’s not time yet. No straining. No lifting. No pushing. No pulling. BUT I have been cleared to go swimming in a pool (no lakes or oceans)…and we can have sex! We were recently brave enough to give it a go and I’m happy to report there was no pain or discomfort!
The last of my steri-strips were removed at my August 6, 2018, post-op appointment and they’re healing well.
BEFORE I GO…
I want to thank Dr. Kurtulus and his staff for their excellent care, the incredible nurses and other surgical team members at Scripps Hospital La Jolla, Brandy for her amazing photographs and the project she is working on, my Mum for driving out (yet again) to be with me for surgery and during a hardest days of my recovery, my husband for all that he’s endured with me, Erin for taking care of me for a few days, Rosie for spending time with me during my recovery, Laura & Chris & Carrie for their wonderful company to celebrate my health, Zeiddy for constantly checking in on me, my employers and co-workers for the beautiful flowers, and all of my EndoSisters, friends, and family who also threw me well-wishes and love.
This has been an amazing experience.
Be well. All of you.
(Updated March 27, 2019)
~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa
Our presentation and Q&A session lasted roughly two hours and Dr. Killen gave an excellent talk about Endometriosis, the theories of causation, symptoms, medical treatment options, etc. I covered the alternative options such as diet, lifestyle change, Eastern medicine, mental health, and physical therapy. The gals (and one husband) who showed up came with some incredible questions!
I cannot thank the EFMP and its staffmembers enough for granting us such an incredible opportunity to reach out to our community. And, Dr. Killen, thank you for taking time away from your busy schedule and personal life to offer such valuable information. I will be forever grateful.