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.

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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:

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July 2018 Surgery Recovery

Photograph of Dr. Mel Kurtulus and Lisa Howard before surgery, titled Resilience; photo taken by Brandy Sebastian
Dr. Mel Kurtulus and I before heading in. Photo courtesy of Brandy Sebastian

As you may know, I like to take extensive notes during my recovery from my Endo surgeries. This helps me better be prepared in case I have another one – just to get a sense of what was normal and what I can expect next time. And who knows – it may help you…or someone you know.

A good friend of mine, Brandie, typed up my chicken-scratch notes. (Thank you BRANDIE!) BUT, the “cliff notes” version is below:

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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!

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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.

Share Your Story: Susie

Photo of Susie

Susie is 41-years-old and was just diagnosed with a surprise Endometrioma in a very surprising location.  She lives in Austin, Texas and is coming to grips with her diagnosis, as well as searching for answers and support.

Susie’s Journey:   I began experiencing symptoms of my disease when I was in my early 20’s around 2004-2006, I felt a lump on the right side of my groin that moved around a bit. I had a pap smear that showed normal results, then a sonogram that did show the mass, and then a CT scan that was inconclusive. I was told that cancer was ruled out and that they had no idea what it was, but that it wasn’t worth doing a biopsy over, but that if it ended up causing problems in the future, I might probably have to have one.

Being a young 20 year old, I feared the idea of anyone cutting my groin open and could not afford to get off of work for surgery anyway. I lived with the mass for over a decade. Throughout that time, I began noticing it growing larger and becoming more firm. It was no longer moveable and it swelled up around my menstrual cycle. The day before or the day I started my periods, there was extreme pain. The pain also continued up to a week after my periods. Sometimes, it made it a little difficult to walk and I’d get a bit of pain on my right leg, but not too much. It prevented me from moving and sitting freely. I couldn’t even cross my legs.

Fast forward to 41 years old, I finally decided that it was time to do something about it. I read up about endometriosis and even asked the doctor if it was a possibility. After about several pelvic exams, 2 or 3 sonograms, a CT scan, and a very painful biopsy that required 2 shots of local anesthesia in order to retrieve 2 samples of the mass, I was finally diagnosed with endometrioma.

I was given the option of excision or just living with it.

Doctor asked me if I’ve considered birth control and slightly suggested I use it. I told him that birth control would not remove the mass and did not help me much when I was on it in my 20’s and that I wanted this lump out of me. He said that he would perform a simple outpatient excision that would require very little (if any) time off of work and that I would be running around just fine afterwards. About 2 weeks ago, I finally had the surgery that did verify “endometriosis”. I was completely anaesthetized to sleep. Btw, I’m not sure what the difference of “endometrioma” and “endometriosis” is because both words keep getting used by my doctor and pathology report. My doctor corrects me when I call it “endometriosis” and says it is “endometrioma” and then the pathology report says “endometriosis”. My doctor seems impatient when I ask him to explain the difference. I almost wonder if he actually knows about what I have and doesn’t want to confirm my suspicion. I am in the dark about that right now.

WELL, I awoke from my surgery to find that my right foot and leg were asleep. I could barely move my toes. My feet have a tingly feeling and my leg has the same feeling as though it’s been asleep and is about to start waking up. I was told that because I could move my toe, it was a good sign and that I should be able to start walking just fine again in about a day. Since then, although, I regained some feeling back to the upper part of my leg and some of the left side of my right foot, I am experiencing Charley Horses” both in my sleep and mostly when I walk for the past week. I still have to walk very slowly with a cane and an extreme limp.

Yesterday, I was admitted into the emergency room to check for DVT (Deep Vein Thrombosis aka “blood clots in the leg”) but I checked out clean. The emergency staff told me that I did not suffer from dehydration and that my potassium levels were fine and that all he can think is that maybe my leg’s nerves are cramping because they are “waking back up”. I don’t know if I’ll be able to walk like normal again. It’s very hard for me to get around at work and college classes are difficult to get to. I have to have people do things for me. I had to cancel my birthday plans to go to the beach because I don’t think I’ll be able to walk around in the sand and the idea of a wheelchair is very depressing. I am getting married in October and am mortified of the idea of having to walk down the aisle or live my life with a cane. My follow-up appointment with my surgeon is next week. Although, I hope that I will be okay by then or that he’ll be able to help me, I don’t know if he’ll have any help to offer. It’s scary how little the medical industry knows about endometriosis. What is wrong with my leg???! Also, now I’m hearing that just because you have endometrioma excised doesn’t mean that it won’t come back and that I should consider a hysterectomy. I don’t want to go through this again. I almost regret having the surgery in the first place. I hope that it was worth it and that I will be able to walk again.

Words of Advice: Read as much as you can about it. Meet as many people as you can. Ask as many questions as you can. Don’t give up.

The Last Word: I hope that we can get more endometrioma awareness outreach out there.

If you would like to e-mail Susie, please feel free to.

I want to send a special Thank You out to Susie for being brave enough to share her journey with us today!  Congratulations on your upcoming nuptials!!  And good luck with your healing and the circumstance with your leg.  You have my email address, woman – keep me posted!!    ❤ Yours, Lisa.

Paper with "Tell your story" written on it

And if YOU would like to share your story, send it to me; I’d love to share it.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Excision vs Ablation

Graphic depicting excision vs ablation
Detail,”The Endo-Graphic” by Sarah Soward.

So, you may be reading this because you have a surgery pending, or you’ve had surgery and want to know if it was the “right” one.  Well, when it comes to Endometriosis, there are typically two ways of dealing with the lesions that I’ve read of. If there’s more, share with me, please!  Whichever way your surgeon opens you up : laparotomy or laparoscopy, robotic-assisted or not – your surgeon will still need to decide how best to handle the lesions he or she finds within your body.

  1.  Excision – removing the entire lesion by cutting a margin of healthy flesh around the lesion – see the graphic above, scooping the healthy soil around the flower to get the roots, and then some.
  2. Ablation – destroying the lesion by burning the surface away.  Like freezing off a mole or wart, but burning away the Endo.  The graphic above with the flamethrower may leave the roots of the lesion, and unhealthy Endometriosis tissue, behind…
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My 2nd Endo Surgery : Recap & Comparison

Illustration of human organs: intestines, uterus, bladder, liver, diaphragm
Yes, I’m an artist!

Well, here I am, alive and doing well!  Surgery was on September 21, 2016, and today is my 3-week surgiversary.

In a nutshell : my Endometriosis had returned, bringing with it a leaking cyst and a bunch of adhesions.  Endo had also decided to now grow on my bowel (the outer layer of my sigmoid colon) and my ureter (the tube that carries stuff from kidneys to bladder – he had to detach my ureter, clean it up, and reattach it).  AND it disappeared from my liver (doc couldn’t find any there this time).  He was able to cut out all of my Endometriosis, except for a lesion that is on my diaphragm.  He cut away all of my adhesions and put my organs back where they belong.  I’ve still got both my ovaries and fallopian tubes.  My uterus was stuck to my bowel, my ovaries and tubes were a rat’s nest, and my uterus was also stuck to the right side of my pelvic wall.  It just sounds like such a mess…But, he did confirm that my bladder’s exterior AND interior were completely healthy and Endo-free.

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A Quick Update from Surgery

A woman smiling in a surgery gown and blue paper surgery hat
A quick pre-op snapshot

So, surgery took place on Wednesday, September 21, 2016.  It’s main intent was to take a look inside to see if my Endometriosis had returned, to excise any lesions and free any adhesions.  The official list of procedures to be possibly done that day, “Robotic Assisted Right and/or Left Ovarian Cystectomy, Excision of Endometriosis and Lysis of Adhesions, Possible Enterolysis, Urethrolysis, and Cystoscopy.”

The surgery took a little over two hours.  I did not get to meet with my surgeon afterward, unfortunately, but did have the pleasure of speaking with him on the telephone before I left the hospital that day.  What I remember:

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