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

An Update on my Insides

Various clocks, all showing 12:45pm

On April 22, 2019, I met with my excision surgeon and gynecologist, Dr. Mel Kurtulus to discuss the results of my annual pap smear, ultrasound, and blood work.

The pap smear came back normal for both of my cervixes. Yay! The blood work came back stellar. The ultrasound; however, had some not-so-welcome results:

  1. My left ovary is developing a cyst. Not just any cyst, but it’s either a hemorrhagic cyst… or (wait for it…) an endometrioma. Right now it is small, coming in at 1.5cm (a little over 1/2 an inch); and,
  2. Small abnormalities within my uterine wall may be signs of adenomyosis. This came as a surprise…but I let him know I was familiar with the condition as many of my EndoSisters had it as well. I’d done research and blogged about it back in 2016.

The plan? To remain positive – it’s a small enough cyst that doesn’t warrant any action (yet), I’m not in ANY pain, I’ll have a follow-up ultrasound in late July, and I’ll meet with Dr. Kurtulus in early August to discuss those results. I will continue tracking my diet, pain, and symptoms in the meantime. And if anything sparks up horribly before then, I’ll call for a consult.

We spent several minutes afterward discussing an upcoming event that we’re hosting together, as well as a few concerns about ultrasound and post-op procedures. The meeting ended in our usual smiles and hugs.

I think if I were in pain, being positive would be harder to maintain. But the only indication that I have anything wrong on the inside (or the possibility that my endometriosis is coming back) is my ultrasound. But will I need surgery in the future? Only time will tell. And will I miss out on future vacations, like Burning Man (a place lovingly referred to as Home, a week spent making amazing memories with friends)? I haven’t been able to return since 2015…and I miss it. Who knows. My best friend and other-love-of-my-life, Rosie, lifted my spirits yesterday with “…you are more Home for me than any place. We don’t need any destination.” So if I am robbed of another two weeks vacation in the future due to a need for another surgery, I won’t lament. I will make other plans with those that I love.

Forging lasting relationships with your medical providers and their staff can lead to amazing experiences and friendships. These people aren’t just my doctor, his nurses, or administrative staff. I consider them my friends. And we’re all in this together.

I don’t know how I got so lucky. I was randomly assigned this gynecologist by my Primary Care Provider back in 2013 because I moved to San Diego, had new insurance, and was in need of a pap smear. And I am so very, very, very grateful.

A friend, fellow EndoWarrior and Sister of our local support group sent me a study showing results of N-Acetylcysteine reducing the size of endometriomas in a small study group. So, I’m going to give it a try. She had previously received a “it can’t hurt” approval from Dr. K when she brought it up to him for herself, so I’m sticking to the study dosing, three times a day, and will see how it looks in July.

So, the plan is in motion. The appointments are on my calendar. And life goes on.

And jokes are always a good thing: “Your an ova-achiever” and “Stop growing so much stuff!” and “At least your left ovary is still working well” are all fun observations since yesterday. They all made me laugh. Still do.

Pain Journal: January 2019

Summary of Lisa Howard's pain journal from January 2019

I’ve decided to start publishing my pain journals; not only in the hopes of documenting my Endometriosis Journey, but possibly helping others with theirs. Let’s get intimately familiar with my habits, shall we? 🙂

I use Google Slides to track my food, drink, bowel movements, medication, sex, and pain levels. I also track the location of my pain. And I’ve found this method helps me stay more in touch with my body and it acts as a great aid for my doctor and surgeons. I can access Google Slides from my PC, my phone, and my tablet; so it’s never too far away. And if I’m too lazy to open the app, I just shoot myself an email with a timestamp and description of what’s going on (i.e, 2:45pm ate a bowl of vanilla ice cream). Then the next day (or whenever is convenient) I rebuild my Google Slides with that information.

There are several Smartphone Apps out there that act as diaries and symptom trackers, too, but I’m all paranoid about permissions and developer access. 😉 BUT…the most important thing: you do what’s best and easiest for you.

So, welcome to my world. I will likely retroactively post my prior pain journals just to have them all in one place and can compare!

I’m pleased to say that January was relatively uneventful! Surgery was a huge success and most of my pain has been discomfort from my incisions and staples, learning my new bowels (and what NOT to eat/drink), and very very mild period pain. I literally forgot I was on my cycle for 99.9% of my period!

You can feel free to scroll through the slides of every day in January:

I also wanted to start tracking my new bowel movements by type and pain levels. I’m a visual kind of person, so I like all the info in ONE place. And I simply cannot believe the difference since my surgery! To poo almost EVERY day multiple times a day and to have zero pain most of the time is incredible! AND to see the difference when I’ve eaten (or in this case…drunk) something that didn’t agree with me. January 25th and 26th were Life Lessons, that’s for sure. I’ll most definitely have to go back in time and rebuild my pre-surgery poop charts!

Blue is the number of poops in a day, the orange line shows if I had any diarrhea (and how many times in a day), and the red line shows pain levels during bowel movements:

I am so grateful for my Endometriosis surgeons: Dr. Mel Kurtulus (my gynecologist and excision surgeon) and Dr. Matthew Schultzel (my colo-rectal surgeon). You have given me my life back.

My 4th Endo Excision Surgery

"Uterus & Guts," created by Ivy Denton
@deathwindchimes 

Before I get started, let me explain the image above. A talented artist by the name of Ivy Denton created it for me (they also created the EndoGuy and PoopChuteSnakie you’ll see below). They’re taking commissions if you’re interested in throwing ideas their way! “What is it,” you may be asking yourself. It’s a whimsical interpretation of my insides: a uterus with two cervix, no fallopian tubes (hence the band-aids and floating ovaries), and it’s accompanied by it’s new buddy: an intestine missing some pieces. I think it’s adorable! Thanks, Ivy!!


On with the good stuff! If you didn’t already know, back in July 2018 during an excision surgery Dr. Kurtulus discovered a pair of Endo lesions on my small intestine . He brought in a colo-rectal surgeon, Dr. Schultzel, to look at it and decide if we could remove it then. Unfortunately, it was deemed too deep and risky without a proper bowel prep and a future resection would take place.

On November 26, 2018, I had a tag-team surgery for my Endometriosis. Dr. Mel Kurtulus once again performed my excision surgery and Dr. Matthew Schultzel performed my bowel resection. This took place just four months after my last excision surgery. The procedure lasted about four hours and went without a hitch. I remained in the luxury resort…I mean the Prebys Cardiovascular Institute at Scripps Memorial Hospital for three nights/four days while I recovered.


Toilet with toilet paper

The Bowel Prep

This was my very first bowel prep. Ever. And I was terrified of so many things. I’d heard horror stories about the taste of the prep, and equally horrifying tales of the aftermath.

I was prescribed Suprep, which of course my insurance refused to cover. If that ever happens to you, get a manufacturer’s coupon off of their website and bring it to your pharmacist. It certainly knocked a bit off the price for me!

Honestly, it didn’t taste that awful…kind of like a salty grape-flavored 7-up. But ugh it was still rough to get down.

Lisa Howard making a face at the first sip of SuPrep

35 minutes after I downed my first big dose of Suprep…and the torrential downpour had begun. Over the next 2 hours, I pooped a total of 19 times (I’m sparing you the details, but kept a detailed log; no pun intended). Most of it was liquid and sometimes I couldn’t even leave the toilet in between craziness.

My colo-rectal surgeon also had me on a regimen of ClearFast, to help not only keep me hydrated during the process but to make for a faster/easier recovery after surgery.

Then at 10pm, I took my 2nd dose of Suprep. It took about 30 minutes to take effect and over the next hour I poo’d liquid 13 times. At 11:30, I dragged myself to bed. At 4:00am, I woke up to take my prescribed ClearFast and learned that Suprep was still in command. I pooped again 5 times over the next hour. And when we got to the hospital, I poo’d liquid again twice before surgery (once in my surgery cap ‘n gown)! I was scared that the clear liquid-pooing would keep them from performing my surgery since I was obviously still voiding. Nope! The show must go on!

Doodle of bowels

The Bowel Resection

After a few months of working with my insurance and getting Dr. Schultzel specially-approved for my surgery (even before he was in my insurance network), the day was here! I endured the prep and I was ready!

My Mum came with me to the hospital and my husband had to work, we met the smiling faces of hospital staff who have remembered us from previous surgeries, AND I had my favorite nurse help me during pre-op setup. Fist bumps, hugs, and cheek-kisses were exchanged all around the pre-op area as they wheeled me out of the room. Have I mentioned how much I love this hospital? They’re like family!

I digress: back to the surgery!

Previously, the endo was spotted on my terminal ileum, which is the area where the small intestine meets your large intestine ( X marks the spot on the picture below). At my request, my colo-rectal surgeon was also going to remove my appendix due to the close-proximity of Endo and the chance that it, too, may be affected. He was also going to inspect and possibly remove any portion of my large intestine that may also be Endo-laden (see the red square below). He ended up doing JUST that.

Diagram showing the portion of bowels removed during surgery

There were a total of five incisions (1 on my right side, 3 on the left, and a larger one at my bellybutton). I was given a TAP block injection while I was under anesthesia to help with my post-op pain. And in went the camera…

Dr. Schultzel spotted the Endo lesion on my terminal ileum right away, then saw more lesions on my cecum (kind of the bottom right portion of the large intestine) and near my appendix. He also saw a lot of pelvic Endometriosis, but knew Dr. Kurtulus would be handling those nasty buggers.

This is where things get exciting! When I learned I’d have my guts stapled together, I envisioned a big ol’ heavy-duty office stapler. BUT a surgical stapler, especially a robotic stapler, is waaaay cooler! It sort of cuts and seals at the same time with a row of tiny little staples. If you’re familiar with sewing, imagine a serger machine. Zip & slice! One neat little package. I have no way of knowing how many staples still reside in my guts, but I imagine a lot of little teeny ones!

If you don’t want to imagine, you don’t have to: here’s a Youtube video (not mine) of another surgeon using a robotic stapler during a surgery (fast forward to the 0:44-second mark) https://www.youtube.com/watch?v=wSxiTZwdUFA

So, Dr. Schultzel removed my appendix, my cecum, a portion of my large intestine, my terminal ileum, and small intestine. All in all, it was a little over 7 inches (18 cm) of my guts. The stapler system was used in all areas where my guts were removed.

My small intestine was reconnected to my newly-constructed large intestine and that connection now lives over my liver, near the right of my bellybutton. Then he wrapped that little newly-formed gut-intersection in a flap of my omentum (a fancy term for a fatty, fleshy organ that sits near the stomach and is kind of like a draped apron) – imagine a little poopchute burrito or taco near my bellybutton. 🙂

Dr. Shultzel then passed the controls of the Da Vinci over to Dr. Kurtulus (see The Endo Excision below). Once Dr. K finished removing any Endo and adhesions, Dr. Schultzel continued to work his magic. He pulled out all of the cut-out bits through a hollow tube placed in my bellybutton incision (called an Alexis wound retractor), stitched, and glued me up.

Alexis Wound Retractor
Alexis Wound Retractor; photo courtesy of Applied Medical

My incisions are definitely larger than surgeries-past, but so much more was done. After reading about the Alexis Wound Retractor, now I understand why my bellybutton incision is roughly 2 inches long!


Doodle of Endo

The Endo Excision

Awww, Endometriosis. It loves me so much it keeps coming back to visit. With it being just four months since my July wide-margin excision surgery, we weren’t expecting to find much, if any. Dr. Kurtulus was there to inspect under the hood just to be safe while I was already under the knife for my bowel resection. A wonderfully, perfect coordinated effort. Boy, were we in for a surprise.

He found newly-formed adhesions on my left side, which involved my left ovary and abdominal wall, more along my peritoneum lining, as well as new adhesions that had begun to smash my bladder back down. He also found Endometriosis lesions “all throughout the pelvis.” They had grown back on my right ovary, my right ovarian fossa (where the ovary hangs out), my Pouch of Douglas, the uterosacral ligaments, near my bladder, my left ovary, and the left adnexa. And, as is customary, an Endometrioma (the chocolate cyst) had formed again on my left ovary. Always my left ovary!!! Even after just four months…*sigh* But…”the rest of the pelvis and abdomen looked clear of endometriosis lesions.” Yay!

He removed all of my Endometriosis lesions with wide-margin excision. He also removed the Endometrioma (he saved my left ovary) and he cut away all of the adhesions that had formed. He also, as is our custom, performed a cystoscopy to look inside my bladder for any Endo or abnormalities: pink, healthy, and all normal! And for the first time in a few surgeries: no Endo on or around my ureters!

Everything that was removed: the gut-bits, the Endo lesions, the adhesions, and Endometrioma were all sent off to pathology. This was the longest pathology report I’ve ever received: a total of seven pages! And it confirmed the presence of microscopic Endometriosis on my appendix. I’m SO grateful the surgeons and insurance all agreed to preventatively remove it.


Photo of Lisa Howard recovering in hospital

The Recovery

My Mum, husband, and friends who saw me after surgery said it appeared to be my easiest one yet, in terms of how I felt during recovery. I, on the other hand, felt it was my hardest.

Four days in the hospital: my Mum stayed with me every day while I was there (I love you, Mum!!), my husband would visit after work, both of my surgeons visited as often as the could, and the nursing staff were freakin’ amazing!

During my stay, I was given a cocktail of Tylenol, Gadapentin, and Celebrex to manage my pain. I was offered Tramadol (100mg), but didn’t want it since I already don’t like taking my 50mg Trammy at home. But the cocktail did well and pain was minimal. If memory serves me correctly, I threw up a few times the evening of my surgery (likely related to anesthesia) and became intimately familiar with the hospital-issued throw-up bags.

My surgeon and hospital staff encouraged me to get up and walk the halls as often as I could muster. Not only would this help keep me limber and young (Ha!), but it would help get my bowels workin’ and tootin’. Those long walks around the 5th Floor wing were fun: I stumbled across my surgeon on one of those walks, as well as my best friend, Rosie, and my husband escorted me down the halls a time or two!

I remained on a liquid diet until I farted…late the evening on my third day. Very long days of nothing but soup and jello. But that fart? Which was AWESOME because not only was my Mum’s face epic and unforgettable when I tooted, but all of the nurses were just as excited as we were, AND I was served a small meal of soft foods (diced chicken breast never tasted SO good!). Mum and I even had a laugh keepin’ track.

Hospital chart showing I farted 3 times since 11/28/18

The next late-morning, I was able to poop (if you can call it that…I’ll spare you the details, but I hope my Mum is laughing when she reads this) and Iwas merrily discharged on Thursday, November 29, 2018.

There were bouts of the dreaded shoulder-gas pain, both at the hospital and at home. A few of them were scream-inducing memorable. And those are the worst moments I remember. Sneezes, coughs, and vomiting were equally unpleasant. As well as trying to get, and remain, comfortable for sleeping. When I got home, I mostly remained on my Tylenol pain management, with the exception of 1 Naproxen Sodium and Two Tramadol through the duration of 2018.

I was off of work for six weeks. And got a little better every day. I kept a running tally of milestones:

  • 11/28/18: Released from hospital and finally at home
  • 12/4/18: I can raise my arms above my head without feeling like I”m pulling my guts out of my incisions
  • 12/8/18: First sneeze since surgery: one sneeze, two sneezes, three sneezes!! SOOO PAINFUL!
  • 12/14/18: I can blow my nose without my guts hurting!
  • 12/17/18: I still can’t bend down and wash my feet, and it’s been 3 weeks since surgery…so I got a pedicure at a local salon. There was some disgusting dead skin!
  • 12/19/18: If I use the handrails, I can walk up the stairs like a normal! Slowly, but normal!
  • 12/20/18: I walked the entire mobile home park! It took over half an hour, but I did it!
  • 12/27/18: I drove!!!
  • 12/29/18: I lasted 10 days without needing to take a pain pill!
  • 1/3/19: I laid down on my side for just a few minutes! Soon: no more back-sleeping!
  • 1/7/19: I’m back to work!!!
  • 1/9/19: I can lay down on my stomach! Albeit for just a few minutes. But still!!
  • 1/17/19: as a fun note: bending or squatting or sitting for long periods still becomes very uncomfortable. So…I haven’t shaved my legs since before 11/26! Bwuahaha.

I cannot tell you how much better I feel since before my surgery. I haven’t had any of my pre-surgery pain. Not one! My bowel movements are (99.9% of the time) pain-free. The constant pain on the right and left sides of my lower abdomen are GONE. My December period was light and cramp-controlled with Ibuprofen. My back pain is gone. And I poop ALL the time.

And…I’m a pooping machine! I compared the first week of November poops to my January poops, both the frequency and the pain levels. My jaw hit the floor:

Chart comparing bowel movements and pain between November and January

I now eat six small meals a day, instead of three large ones, to accommodate my new bowels. I also have severely restricted my alcohol intake. Where before I could enjoy 2 or 3 beers in a sitting, I can now only have one. Same goes for wine or cocktails. More than that and I’ve noticed I’m severely dehydrated and my gut’s not happy for days. So, I’ve become the ultimate cheap date: appetizer menu and one drink. And it’s been a marvelous trade-off.

I’m super grateful to my Mum for being with me for a week while I recovered. There’s just something so special about the healing energy of a Mum. And to my friends who came to take care of me after Mum left: thank you. ❤


Dollar signs

The Bills!

Nobody’s favorite part…the money!! This has been my most costly surgery to date; not only because of the two surgeons involved, but the hospital stay after surgery! And my bills are still rolling in:

$224,476.41Hospital Facility Bill Insurance paid per contract
$1,687Endo Excision Surgeon Bill Insurance paid per contract
$2,082.19Pathologist Bill Insurance paid per contract
$3,416Colo-rectal Surgeon Bill
Insurance paid per contract
$2,800AnesthesiologistInsurance paid per contract
$683Asst Surgeon: Excision BillInsurance paid per contract
$285Asst Surgeon: Colo-rectal BillInsurance paid per contract
$2,250My co-payI paid in full
$235,429.60Total(updated 4/4/19)

Camera

Surgery Photos

Before I share all of the surgery and recovery photos, I wanted to share the photo I found the most amazing.

Back in July, Dr. K took a photo of my bowel with the 2 pink & red Endo lesions. In November, those same splotches had turned BLACK. In a matter of four months, the disease altered that much. I know that lesions come in a broad range of colors…but I didn’t realize they changed color or shape once they were formed! Nor so quickly! So, we’ll start with that! Be flabbergasted with me 🙂

Comparison photos of July 2018 and November 2018 Endo lesions on bowel

But here are the rest of my surgery photos I received at my post-op appointments (click on them to enlarge):


Camera

Recovery Photos

Mum took a lot of photos while we were in the hospital (but funnily enough…none of her!). Here’s the Hospital Shenanigans:

And here’s a slideshow of my incisions from Day One to Week Seven!

If you’ve made it ALL the way to the end of today’s blog entry, you have my applause!

I’m eternally grateful to both my skilled surgeons and their staff; the insurance crew who expedited the approvals through the system; my Mum, my husband, my Seester, and my friends for not only helping me, but putting up with my grumpy-recovery BS; as well as my employers and my co-workers for allowing me to do this second surgery this year. 2018 was one hell of a ride. And this surgery could not have gone any better without each of you.

Let’s hope there’s no need for future surgeries!

(Updated May 17, 2019)


Pain & Poops: Then & Now

Happy poop with daisy on it's head

Well, here we are in 2019 and I’m starting my blog off talking about poop…Why? Because I’m SUPER excited to share with you how different my bowels (and pain levels) have been since my recent bowel resection and Endometriosis excision surgery.

If you weren’t aware, I underwent a bowel resection to remove deep-infiltrating Endometriosis from my small intestine.

Embrace this discovery with me! Here’s my pain journal summary for November of 2018:

Summary of November 2018 pain and symptoms

And here’s my pain journal summary for January of 2019:

Summary of January 2019 pain and symptoms

I went one step further and compared my bowel movements and their pain levels for the first eight days of November and of January! The difference is…staggering!

Table of poops for Nov 2018 vs Jan 2019

Look how numbers have completely shifted!!! I was flabbergasted when I did the comparison! I mean, I’ve obviously noticed a huge difference in my quality-of-bathroom-life, but wasn’t expecting THIS! And if you’d like more up-to-date info on my bowel movements and pain symptoms, I’ve started blogging about them on the first of every month.

If I ever needed any sort of reassurance that my bowel resection and Endometriosis excision surgeries were the right call, this is it. Not that I needed that validation. And am so grateful to Dr. Mel Kurtulus and Dr. Matthew Schultzel for their expertise, compassion, and friendship.

But I was SO excited about the difference that I wanted to share it with you…And bring in the New Year with…poop-talk.

Stay tuned. I’ll be blogging full-force once again now that I can sit at a computer for longer periods of time. And I cannot wait to share with you the details of my last surgery and the findings.

Be well. I’ve missed you Readers. And I’m so pleased to be back in the saddle, so to speak.

(Updated April 5, 2019)

Documentary: Stronger Than Endo

White words on black background: Stronger than endo

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.

We also interviewed my gynecologist and Endometriosis excision surgeon, Dr. Mel Kurtulus, of San Diego Women’s Health.

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.

Endometriosis Excision Surgery 3.0

Pre-surgery photograph of Dr. Mel Kurtulus and Lisa Howard taken by Brandy Sebastian, titled Resilience.
Dr. Mel Kurtulus and I before heading in. Photo courtesy of Brandy Sebastian; used with her permission

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.

Segment of pre0-op report "robotic assisted excision of endometriosis, lysis of adhesions, enterolysis, urethrolysis, cystoscopy, possible right and/or left ovarian cystectomy, bilateral salpingectomy"

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!

Portion of operative report (about 1 page worth of text)

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).

Lisa's surgical photos of fallopian tubes and ovaries
The yellow circles are showing Endometriosis on my fallopian tubes

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.

Lisa's surgical photos of the pouch of douglas, Before and After excision surgery

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:

Additional surgical photographs of the pouch of douglas
Again, circles indicate Endometriosis lesions that I’m aware of

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.  So, it’s still in there, but I did already have a consult with that colo-rectal surgeon on August 8th.  My surgery date for the resection is pending and may take place by the end of this year!

Lisa's surgical photographs depicting Endometriosis on the bowels

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).

Lisa's surgical photographs of adhesions on the bladder

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!

Future Plans

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

There was a cancellation!

Calendar with July 18th marked by a yellow ribbon

My August 15th surgery has just been bumped up to July 18th!!

My work is totally cool with the change.  HR even came in to offer some kind words followed by, “I’ve never been more excited for someone to get a surgery.”  He knows how much I’ve been hurting lately.

My Mum can still join us!

And I’m nervous and excited and scared and and and…the whole spectrum of emotions that bubble-up with a pending surgery.

Best news ever.