My 5th Endometriosis Excision Surgery

A drawing of a uterus, ovaries, and intestines.
Commissioned artwork by Sarah Soward

What an incredible Journey leading up to my fifth surgery!  Covid-19 postponed my surgery date by a week but, just in the nick of time, California’s governor lifted some lockdown restrictions that allowed for my surgery to move back to it’s original date of May 13, 2020. Today, June 10, 2020, marks one month since my surgery! Already! I am overjoyed with the results and the skilled hands of my surgeons.

A medical folder with "Surgery # 5" written on it

The Hospital

Due to safety measures of C-19, my Mum wasn’t able to join me for this surgery and recovery.  My husband was only able to drop me off at the curb of the hospital and I had to walk in alone. I didn’t see him again until he was picking me up to take me home.  It was a surreal experience. No piano player to greet me in the lobby and two checkpoints to pass with Covid questions, but I knew I was in good hands and the time passed super-quickly.

As usual, the hospital staff were incredibly kind and compassionate.  There were even a few familiar faces from prior surgeries.  Scripps Memorial Hospital in La Jolla really does make me feel like a part of the family.  And it made me feel far less alone while I waited.

The two-hour time window between check-in and surgery flew by. Forms, questions, answers, IVs, talks with surgeon, talks with the anesthesiologist, talks with OR nurses, talks with prep nurses. Before I knew it, it was time to roll on back.

One of my favorite questions to ask before each surgery: “What music will we listen to in the OR?”  The option for me to choose is always given, but I default to the surgeon’s choice. This time (and always?): “Chill” station.  Perfect.  So the last thing I remember before taking that surgical nap: being wheeled into the OR, introduced to the rest of the OR staff, and after a few laughs and getting positioned on the operating table, a gentle whoosh of fluid through my veins (I can’t remember for the life of me what the anesthesioligst said before injecting the magic juice), and waking up in recovery.

I always wake up freezing cold. So the nurses were wonderful and turned up the heat on my air-blanket. I’ve GOT to get one of those for home. Ha!  Then I fell back asleep, woke up later, and began the transition from naptime to going home.

The timeline?  I arrived at the hospital at 5:15am, and was wheeled to the OR around 7:20am.  Surgery began at 7:50am and the report was dictated immediately after at 9:47am. My surgeon called  my husband at 10:20am to discuss what he found.  The nurse called Jim around 11:47am to let him know I’d be ready to go home soon, and we made it home at 1:00pm.

The Surgery

Text from operation report summarized below

Get on to the nitty-gritty already! I’ll include images of my official op report, followed by my (untrained) laymen explanation. All the learning!

Dr. Mel Kurtulus was my surgeon and Dr. Chandra Spring-Robinson was the Assistant Surgeon. Both are from San Diego Women’s Health and I cannot speak highly enough of them, both for my surgical care and for my regular gynecological needs and Endometriosis symptom management.

If you recall, I had a bowel surgery in 2018 and have rocked a 2-inch vertical scar beneath my belly button. In order to avoid any complications with scars, my surgeon decided to open a port and take a peek under the hood through an incision beneath my left rib cage rather than his usual route (through my belly button). So he took a quick look, realized that the belly button was free and clear of any adhesions, and opened up the rest of the ports: I have incisions on the right torso, my belly button, and two on my left torso.

Once properly situated, strapped in, and stirruped to the OR table, a foley catheter was placed inside my bladder. Through the belly button incision, they pumped my abdomen full of 3 liters of CO2 gas (this helps plump up the belly so they can see clearly inside).

Text from operation report summarized below

The uterus appeared normal (please remember they suspect I have Adenomyosis, which is not visible as it hides within the uterine muscles).

My bladder was stuck to my uterus and pinned there by adhesions. In the photo, it looks very spider-webby.

The right ovary had a cyst which they assumed was a benign cyst.

The left ovary was pulled and stuck to the left side of my pelvic wall by adhesions. It also had a cyst present.

Not mentioned in the report, but is visible in the photographs and was discussed at my post-op meeting, was the yellow-tinged inflammatory fluid in my pelvis. It was at the bottom of my pelvis, just floating around as loose fluid. If you’ll recall a few months ago, my ultrasound technician found “loose fluid” in the area of my intestines. I was advised that this is “inflammatory fluid” and is normal to find in instances of leaking cysts, endometriosis, and adhesions. The fluid was removed during surgery.

Text from operation report summarized below

Endometriosis lesions were found on the outside of my bladder, as well as the right round ligament, the cul-de-sac (also called the Pouch of Douglas), the left round ligament, the left paracolic gutter, and on the sigmoid colon. All of the lesions (except for the sigmoid colon) were excised and packaged up for pathology.

Text from operation report summarized below

Due to the closeness of the left ureter to the endometriosis lesions near my left ovarian fossa (the little cavity of the pelvis where an ovary sits) and the stuck left ovary against the pelvic wall, my surgeon took great care to keep the left ureter safe from any surgical damage. The left ovary and its cyst were completely removed. We had previously agreed to remove my left ovary due to ongoing pain and it proving to be a problem-child (for lack of a better term) discovered during previous surgeries.

Text from operation report summarized below

Now, back to the guts. On my distal sigmoid colon, he found a patch of Endometriosis, which he notes as “a deep penetrating cluster of endometriosis lesion.” In my post-op appointment, he classified it as a nodule of Endometriosis, and said it looked like Deep Infiltrating Endometriosis to him. Unfortunately, due to the high risks involved in cutting that deeply into the intestine without a full bowel prep and a colo-rectal surgeon on hand, he took note (and photographs) of its positioning and opted not to remove the nodule. More on this will be addressed in “The Plan” section below.

According to an April 2003 study published in Human Reproduction, Deep Infiltrating Endometriosis (also referred to as DIE) is described as “…a particular form of endometriosis that penetrates greater than 5mm under the peritoneal surface [citation omitted]. These lesions are considered very active and are strongly associated with pelvic pain symptoms [citation omitted].” Brigham and Women’s Hospital in Boston, Massachusetts says that DIE is a rare occurrence, showing up in only 1-5% of women who have Endometriosis.

Text from operation report summarized below

He then removed the cyst on my right ovary and was able to save the ovary.

He thoroughly checked the rest of my pelvic cavity and found no further Endometriosis. He freed all adhesions and restored any wonky anatomy to its rightful place.

Before closing me up, a bag was placed inside my pelvic cavity, Lefty was tossed inside the pouch, and all was pulled out of my body. YAY! Good riddance! All of the CO2 gas was expelled from my pelvic cavity. And I mean ALL of it. I had ZERO occurence of post-laparoscopy shoulder pain due to any remaining CO2 gas. NONE. Dr. Kurtulus and I refer to it as the “Lisa Special,” where extra time and care is taken to make sure it’s all out. He does it for all of his patients and one day I hope he publishes the importance of taking extra time and effort to teach other surgeons. With all the gas gone, I was sealed up.

Text from operation report summarized below

Also, per tradition, he took a look inside my bladder in search of any signs of Endometriosis or Interstitial Cystitis or anything else that should not be there. Clean as a whistle and beautifully pink.

Another surgery wrapped up. All involved are skilled at what they do. And this has been THE EASIEST recovery yet.

Photographs

Since not everyone will want to look at my fascinating insides, I’ve embedded the surgery photos at the bottom of this blog entry. Scroll down if you’re curious!

But here’s a one-month progression of my belly healing up after surgery (contains some close-ups of incisions). If you don’t want to watch it, just scroll down a little further to the next section. Although this slideshow only focuses on several days (the entire first week, then once a week after that), I actually do have pictures from every day while healing. Believe it or not, they do help me when I forget if the bandaid lasted that long, or if that incision oozed, or if “this” looks normal. I go back to prior surgery photos often. And I recommend it for your personal notes.

Pathology Results

The pathologist, Dr. Kurt Mathews, found that all of the lesions were Endometriosis. Dr. Mathews also identified the right ovarian cyst as a benign cyst and the left ovarian ovary as a hemorrhagic corpus luteal cyst: both cysts were normal; neither was an an Endometrioma. Which is great news to me. Maybe my body will behave, eh?

The Bills

As of June 29, 2020, I am still waiting to receive most of the insurance Estimate of Benefits/ itemization and confirmed payments:

  • The hospital: $89,775.18
    • This includes the OR and pathology lab fees, medications, supplies, and equipment
  • The surgeon: $5,373.00
  • The assistant surgeon: $1,368.00
  • The anesthesiologist: Pending
  • The pathologist: $671.26
    • This is payment to the pathologist for the tissue examination.
  • My co-pay: $500
  • TOTAL: $97,687.44 (pending bills still need to be added as of 6/10/20)

The Plan

My post-op went very well and all of my questions and concerns were addressed. I have a follow-up consultation on September 1, 2020. At that future visit, we will discuss any remaining symptoms of pain or discomfort. As of today (June 10, 2020), I’ve had no recurrent pre-op symptoms. Any discomfort or pain that I am having is due to the healing process of surgery.

We will monitor my post-op bowel pain. When I poop I once more have the feeling of glass shards running through my guts, which wasn’t present before surgery. Most likely, the intestines are still healing and adjusting from the laparoscopy. I was told that this generally fades a few weeks to months after surgery.

Dr. Kurtulus had already had a private conversation with my colo-rectal surgeon about the Endometriosis nodule on my sigmoid colon. If I do decide to go in for another surgery to have that nodule removed, it will likely be very similar to my 2018 bowel resection. Only the small portion where the lesion is embedded would need to be removed. I’ve forwarded the surgery photos and op report to my colo-rectal surgeon, Dr. Matthew Schultzel, for review and discussion. If after the 3-month follow-up I have had any ongoing or new pain in that area, I will have to decide then what to do.

But the plan?

  • Wait and see. If any symptoms become unbearable, go in for surgery. Hopefully it never happens. But I am struggling with the mental aspects of accepting that a deep-infiltrating nodule of Endometriosis remains inside my body and is just lying in wait.
  • Continue to maintain (and better) my diet, lifestyle, and exercise.
  • I will also continue to daily track my diet, symptoms, and any needed pain medication use. And I will bring summaries of those journals to Dr. Kurtulus in September.
  • But the biggest part of the plan? Remain positive during all of this.

Comparison to Past Surgeries

Where was Endometriosis found throughout this whole journey? How much did the surgeries cost (even if covered by insurance)? I always like to go back and compare. And, unless otherwise noted, all lesions were excised:

June 30, 2014: 2 incisions; 2.5 cm Endometrioma on left ovary; 2cm hemorrhagic corpus luteum cyst on right ovary; Endometriosis lesions located on liver, diaphragm, between bladder and uterus, left ovary, cul-de-sac, and various locations throughout the pelvis; the uterus was adhered to the bladder; peritoneum adhered to the bladder and uterus; left ovary and fallopian tube obliterated and adhered to adnexa; cul-de-sac obliterated and covered in adhesions; and bowel was adhered to left side of pelvic wall. The liver and diaphragm Endometriosis was not removed. Total cost: approximately $71,000. Surgeon: Dr. Mel Kurtulus

September 21, 2016: 4 incisions; 2cm hemorrhagic corpus luteum cyst on right ovary; Endometriosis lesions located on diaphragm, sigmoid colon serosa, right ureter, left side of uterus, various locations throughout the pelvis; adhesions were found throughout the pelvic compartment; uterus was adhered to bowels in several areas; both ovaries and fallopian tubes were clustered and stuck together; right ovary was adhered to backside of uterus; uterus adhered to right side of pelvic wall; and extensive scar tissue on bowel and backside of uterus. The liver Endometriosis lesion had disappeared and the diaphragm Endometriosis was not removed. Total cost: $93,472. Surgeon: Dr. Mel Kurtulus

July 18, 2018: 4 incisions; 2cm hemorrhagic corpus luteum cyst on right ovary; Endometriosis lesions located in cul-de-sac, small intestine, near the sigmoid colon, left ovary, fallopian tubes; the tubes were inflamed and covered in disease and were both fallopian tubes were surgically removed; adhesions were found on and near the sigmoid colon, fallopian tubes, and bladder; the sigmoid colon was adhered to left pelvic wall and the bladder was stuck to my uterus. The diaphragm Endometriosis had disappeared. The small intestine Endometriosis was not removed. Total cost: $121,669.50. Surgeon: Dr. Mel Kurtulus

November 26, 2018: 5 incisions; 2cm Endometrioma on left ovary; Endometriosis lesions located on terminal ileum (small/large intestine), cecum, appendix, cul-de-sac, both uterosacral ligaments, near the bladder, and on both ovaries; adhesions had formed on the left side of my pelvic wall, my left ovary was stuck to the left side of my pelvic wall, and my bladder was adhered to uterus; a portion of my small intestine, large intestine, cecum and appendix were all removed, totaling approximately 7 inches during the bowel resection portion of this tag-team surgery; microscopic Endometriosis was found on appendix and cecum, as well as large intestine. Total cost: $235,429.60. Surgeons: Dr. Matthew Schultzel and Dr. Mel Kurtulus

May 13, 2020: 4 incisions; 3cm hemorrhagic corpus luteum cyst on left ovary; 1.2cm benign cyst on right ovary; Endometriosis lesions were found on the outside of my bladder, right round ligament, the cul-de-sac, left round ligament, left paracolic gutter, and deeply-embedded on my sigmoid colon; my bladder was adhered to my uterus, the left ovary was adhered to the left pelvic wall; and my left ovary and adnexa were removed completely. The sigmoid colon Endometriosis nodule was not removed. Total cost: Pending. Surgeons: Dr. Mel Kurtulus and Dr. Chandra Spring-Robinson

The Recovery

Let me start by saying this has been the easiest recovery yet! In a future post, I’ll share my itemized recovery day-by-day journal (I write down EVERYTHING from the second I’m home to four weeks out). And my husband has offered to help so we can compare it to previous surgery recoveries…as well as identify factors that may have made a difference in this time. So, please stay tuned for that separate blog entry.

During the four-weeks following surgery, I had ZERO shoulder pain from CO2 gas (thanks to Dr. Kurtulus and the “Lisa Special”!). And I took ZERO opiates and only two NSAIDs! TWO! I’m so amazed!!! Every day was an experience and journey. So, please stay tuned for the day-by-day breakdown, triumphs, pitfalls, setbacks, and “Today I could do this” entries which I’ll publish as soon as I’ve transcribed it. If I typed those here, this blog would go on FOREVER (and it’s already sooo long)!

Update 7/4/20: it’s been nearly 8 weeks since surgery. I have VERY little surgery pain. If I do, it’s mostly discomfort of low levels. If I overdo things, the discomfort can become pain, but it fades quickly. I DO HOWEVER still have pain when I poop: gut-splitting pain. And I’m curious how my July period will be. June’s period had 2 days of intense pre-op pain on the lower left side. We’ll see!

Surgical Photographs

As promised here are the surgery photographs! Please be aware that the scans are low quality; the Endo on the colon is MUCH more visible, almost a dark purple blotch on the hard printouts. If I get higher-quality scans, I’ll be sure to update these. You can click on them for a larger image.

Did you actually read all the way to the end? OMG. You’re amazing!! Not only is this blog meant as a tool to help others with their surgeries, recoveries, etc., but it’s absolutely a tool for myself: If I need to have another surgery, I can come back to these notes and refresh on what I may need or expect. So, thank you for enduring an incredibly lengthy blog entry!

And if you have your own upcoming surgery, I hope it provides long-lasting relief, that it is a easy recovery, and please feel free to reach out to me if you ever need anything.

*Updated 7/4/20*

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

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 of a robotic stapler during a surgery (fast forward to the 0:44-second mark) https://us.davincisurgerycommunity.com/detail/videos/p4_stapler/video/5270736802001/stapler-clamp-and-fire?autoStart=true#

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.