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 12, 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*

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.  (Update: I had my 4th excision surgery in November of 2018 to remove this Endo and a bowel resection.)

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

My 2nd Endo Surgery : Recap & Comparison

my-insides
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.

For those who enjoy reading medical mumbo jumbo, an excerpt from my Op Report:

op-report-2016

Here’s a little comparison chart of what was found (and done) in 2014 and 2016…as well as the difference in COSTS from the two surgeries.  Don’t get me started on the inflated costs of medical care in the U.S…

compare-surgeries

costs-surgeryThis recovery was SO much easier than my 2014 surgery.  I was far less bloated, hardly had any residual pain from the CO2 gas, and felt a lot better both physically and mentally.  Don’t get me wrong; it was still hard (I’ll save that for another blog entry), but it truly was night and day, comparatively. And it’s still rough…I can only sit, stand, or walk for a small amount of time before having to switch it up a bit because of the pain that creeps in around my incisions and abdominal muscles.  And I’m still severely restricted until early November on what I can do…and I’m sure I’ll be building up my strength and endurance for a while after that.

BUT : I haven’t had any recurrent Endo pain since my surgery (other than those associated with surgery).  Wonderful news.

Below is a little .gif I put together so you could see the difference between 2014 & 2016 for the first nine days after surgery.  When I asked my surgeon what he did differently from 2014, he let me know that he let out as much of the CO2 gas as he possibly could.

output_5saoxf1

And here I am now (well, October 4, 2016):

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If you’d like to see photographs of my insides and the teeny surgical tools, click here 🙂

So, now that I’m all freed-up of 99.9% of my visible Endometriosis, the adhesions have been cut away, and my “anatomy has been restored,” as Dr. Kurtulus so eloquently wrote, what’s the plan?  I’m giving up birth control pills since they didn’t do anything to keep my Endometriosis from returning (I hate the side effects so much).  I’ve already had one period since surgery – it lasted a whopping 3 days and the pain was so minimal on Day One that it was handled with two Ibuprofen.  I’m also monitoring my pain levels and diet daily (made easier via Google Slides).  I’ll go back to see Dr. Kurtulus in April for my annual exam and pap.  BUT if I notice any horrible return of pain before then, I’ll make an earlier appointment.  And, at the advice of my physician, I’ll continue my efforts to “eat healthy, drink healthy, and exercise.”

I am so grateful to my gyno/surgeon, his staff, the hospital, the surgical team, my wonderful Man, my Mum, and my Rosie.  And to all of you who sent me care packages, you’re awesome – they were used well. ❤

Here’s to hoping recurrence is a thing of the past…

Yours,

Lisa

And, if you made it all the way down to the bottom, yes…that is a poop with a corn in it. What better way to illustrate those are my guts? 😉

cpn-poopy-corn-copy
Cap’n Poopy Corn

 

Adhesion Prevention

taffy

You may have heard of adhesions and know what havoc they can cause. Have no idea what I’m talking about?  Read more about adhesions here.

Today an article hit my inbox about adhesion prevention, published in 2015.  You can read the article here:

http://www.mst.ru/publications/eng/oxiplexAP/Choi_A%20Sticky_subject.pdf

I found it very interesting.  Of course, it doesn’t yield any answers, but it does discuss ideas and the need for further research and testing.  AND it gives me something to discuss with my surgeon should I ever need to go back under the knife.

Knowledge is power. ❤

The Wurn Technique : Improve Infertility and Adhesion Pain?

Logo for Clear Passage Physical Therapy

Have you heard of the Wurn Technique?  I hadn’t until a few weeks ago when I received an email from Clear Passage with links to a recently-published study showing the Wurn Technique can improve infertility issues, as well as reduce Endometriosis pain.  Are they claiming to cure Endometriosis?  Not at all.  But they are claiming their technique may help reduce your pain and may increases your chances of becoming pregnant.  So, curious as I was, I read up on it, asked questions, and now I present this information to you!

Personal Note: I am not endorsing Clear Passage or the claims made in these studies or their webpage.  I am simply pointing you, the curious reader, in a direction you may not have located otherwise.  Always, always, ALWAYS do your own research.  And choose a treatment that feels right for you.  If you have any questions about the Wurn Technique, please reach out to Clear Passage by email or 1 (352) 336-1433.  They will answer your questions and, if you so desire, schedule a phone consultation with one of their therapists (for free) to see if this is a viable treatment option for you.

Update 1/12/16 : If you’re located in the San Diego area, Clear Passage now has a San Diego location.

Clear Passage

Clear Passage was created by Belinda and Larry Wurn after Belinda was diagnosed and treated for cervical cancer in 1984.  After enduring surgery and radiation therapy, Belinda’s insides were scarred, creating a “frozen pelvis.”  Conventional medicine did little to ease her suffering, so she and Larry studied physical therapy techniques in the US and abroad and practiced the manual physical therapy they had been learning.  And, it was working!  They began developing their own methods and manual therapy techniques to ease her chronic pain, which ultimately became known as the Wurn Technique.

The Wurn Technique

The Wurn Technique involves 200 manual therapy techniques, each created to palpate the restricted areas of the body, freeing up adhesions and restoring the proper flow of the body.  It is generally a 5-day treatment comprising of 20 hours of bodywork.  Again and again, Clear Passage was able to “reverse infertility” for many women, freeing Fallopian tubes from scar tissue, and restoring their proper function.  Many women have praised Clear Passage and the Wurn Technique for the ability to conceive, and successfully deliver, a child.  All without surgery.

Representation of the Wurn Technique
A representation of one of the hundreds of protocols employed by the Wurn Technique

KSAT12, a Texas-based news station, broadcast a story on August 19, 2015, about the Wurn Technique.  (Update 3/18/19: unfortunately, it appears the video has been removed and the link is now dead.)

Infertility

Testimonials are a great way to do business; however, Clear Passage wanted scientific proof!  They conducted a small clinical trial of a woman whose Fallopian tubes were both severely blocked, and she had been diagnosed with a frozen pelvis.  Previous surgical intervention to unblock her Fallopian tubes failed and she was resigned to not having any children.  After working with the therapists at Clear Passage and using the Wurn Technique, they were able to completely unblock one of her Fallopian tubes!  Fantastic results, but not enough proof.  So…they went BIG and began a 10-year study of their technique and infertility results.  And it was recently published in the Alternative Therapies in Health and Medicine journal.

In that study, they examined and treated nearly 1,400 patients over a ten-year period.  Of them, many women had Endometriosis-related infertility and astounding 43% of those patients conceived after their Clear Passage/Wurn Technique treatments.  A figure which surpassed even the surgical intervention figures (38-42%).  Women with both PCOS and Endometriosis also reported a successful pregnancy rate (75%).  Undergoing IVF?  This study found that Clear Passage and the Wurn Techniques had pregnancy rates 1.5 times higher than IVF alone.  Overall, Clear Passage and the Wurn Technique had a 60.85% success rate in opening one or both blocked Fallopian tubes! How does it work?  “…the Wurn technique… appeared to work by deforming adhesions in the body, thereby allowing increased mobility, motility, and function of the structures involved in fertility.” (Alternative Therapies, May/June 2015, Vol 21, 3, p. 37)

Further studies are needed to evaluate if the Stage of Endometriosis has any bearing on the treatment outcomes.

Endometriosis Pain

Painful sex and painful periods.  Two very painful things most women with Endometriosis have to deal with…

Graphic depicting adhesions around endometriosis
Click for larger view

In 2011, Clear Passage again hit the scientific and medical community to see how their Wurn Technique affected these painful issues associated with Endometriosis and the study was published in 2012.  All of the study participants had been previously surgically diagnosed with Endometriosis and 78% of those women also had pelvic adhesions.  One study consisted of 14 women who complained of painful sex; another consisted of 18 women who complained of painful sex and painful periods.  Each of the women underwent 20 hours of physical therapy using Clear Passage’s techniques.  The studies concluded that painful sex and sexual function were statistically significantly improved and painful periods statistically significantly decreased for the study participants.

In 2014, they submitted an update on that study! Seven of the 18 patients from the 2011 study were available for follow-up a year later.  Fifty percent of the women still did not experience any pain with sex!  Fifty percent!  And the participants also reported a continuing decreased amount of menstrual pain.  The Wurn Technique may prove useful to a woman who is having painful intercourse or painful periods prior to undergoing another laparoscopic surgery, or if she cannot afford a(nother) surgery.  An alternative option, which may lead to a year of reduced symptoms.  But, again, this appears to be only adhesion-related; shifting, freeing, and stretching the adhesions.  It may not work in all painful cases if adhesions are not the causation.

The Interweb’s Two Cents

I decided to wander around the Internet for testimonials, questions, and nay-sayers about the Wurn Technique.  So I waded through the first 20 pages of Google search results and present you with a few results:

Zoe was a satisfied customer from 2007.  She stressed that the Wurn Technique is neither massage therapy or physical therapy, but a “deep deep deep body work…”

Pogo1 wrote on a forum in 2008 and was met with a good experience of the Wurn Technique in the UK.

Amber3 reached out in 2011 for anyone who had experience with the Wurn Technique.  FaithHopeLove responded that she had the Wurn Technique to treat ankle scar tissue with fantastic results.

Mojo1234 posted in 2011 that the Wurn Technique did not work for her, but “…I think it does for some.  It depends on the extent of adhesions and what’s attached.”

Bookbabe posted an inquiry online back in 2013, and was met with skepticism, but also a few positive remarks.  She had her physician talk to Clear Passage and, “[h]e said what they are doing makes sense to him and that there is a chance that it would work.  He also called an ob/gyn friend of his to see what she thought of it and she said that when they do surgery to try and remove scar tissue and they are also stretching and tearing so it make sense to her as well, although she had never heard of it before.”

Mark Crislip posted shortly after the 2015 study was released with some points as to why he feels the results of the study, and the study itself, are disingenuous.

Craig Bowden’s daughter started a Gofundme campaign to help with medical and travel expenses for his Wurn Technique treatments.  He had severe abdominal adhesions after several surgeries, but updates, “[b]efore heading down to Clear Passage, I had a persistent/painful bowel obstruction, could only walk short distances with a crutch, had trouble going up/down stairs, experienced tremendous pain in my abdomen on a daily basis, had a very limited diet of crackers/similar items, and required a significant amount pain medication everyday. Only a mere five days after their treatment, I’m writing this as a person who can walk extensively without a cane, stand upright with great posture, and move freely without pain. I have diminished my baseline of pain and I am tapering down my pain medication. It’s absolutely incredible!”

As always, you must decide for yourself what you will believe and what course of action you will take.

I would like to thank the Clear Passage team for being a wealth of invaluable information and putting up with my endless questions and requests during this blog-writing process.  If anything, Clear Passage’s dedication to improving womens’ lives is very evident to me.  They truly believe in their work.  I hope that they are able to continue to ease the pain and suffering of others while also continuing their pursuit of additional scientific proof.

(Updated March 25, 2019)

Resources:

Adhesions.org

Alternative Therapies in Health and Medicine (2015; Article) Ten-Year Retrospective Study on the Efficacy of a Manual Physical Therapy to Treat Female Infertility

Babycenter.com

Clear Passage

Journal of Endometriosis and Pelvic Pain Disorders (2012; Article) Decreasing Dyspareunia and Dysmenorrhea in Women with Endometriosis Via a Manual Physical Therapy : Results from Two Independent Studies

Journal of Endometriosis and Pelvic Pain Disorders (2014; Letter to the Editor) Update on “Decreasing Dyspareunia and Dysmenorrhea in Women with Endometriosis Via a Manual Physical Therapy : Results from Two Independent Studies”

~ 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

Reader’s Choice : What’s Changed?

OLYMPUS DIGITAL CAMERAI had grown up thinking my pain was normal. And only learned after my surgery that I have a disease and it wasn’t normal.

But what does that mean for me physically? What’s changed?

Whether it be from my excision surgery and D&C, my change in diet, the 6 months of Lupron Depot injections, my new birth control pills, or a combination of them all: I won’t know. All I know is things have been very different.  Please be advised this blog may be a little bit of TMI…

  1. I no longer have killer period cramps
    1. Granted, I’ve only had two periods since my surgery before the hormone therapy stripped me of my cycles, but those two periods were the easiest periods I’ve ever experienced. The cramps were so minimal, I didn’t even know I had started.  They were like an annoying gnat, barely given a thought.  We shall see what my next cycle holds in store for me…whenever it decides to kick in.  At the time of writing this entry, I haven’t bled in nearly six months…
  2. I no longer have incredibly heavy or long periods
    1. The two periods I have had since surgery were incredibly light and only lasted 2-3 days. UNHEARD OF!  If you told me six months ago that’d be the case, I would have called you crazy and laughed in your face 🙂  Again, waiting to see what my next cycle brings…
  3. I no longer have constant lower back pain
    1. I used to have daily lower back pain.  I figured it was because I sat at my job all day, lumbar pressure and all that jazz.  I used to also continuously crack my back in the hopes of relieving that pain.  But now, it’s gone.  Hasn’t returned.  During my research, I have since learned that chronic lower back pain is a symptom of Endometriosis.
  4. I very rarely have headaches anymore
    1. I’m assuming this has more to do with a change in diet than it does with my Endometriosis.  Before, I rarely drank any water, but had tons of coffee and soda during the day.  I think the headaches were my body’s way of screaming at me to hydrate.  But I very rarely get any headaches anymore. And when I do, they’re incredibly light and go away with just a few Ibuprofen.  They’re very well-behaved.  However, there have been studies linking migraines and Endometriosis.
  5. I no longer get stabbing, shooting pains in my ribs (I used to refer to these as a “bubble in my lungs” or “lightning”)
    1. I used to get sudden, and quick, stabbing pains in my ribs or lungs.  They were so fleeting it’d only last about a second, but it was so powerful it was enough for me to intake a breath and “Ow!”  Whatever they were, I haven’t had one since my surgery.  I’d like to think it’s because the doc removed the Endo implants from my diaphragm.  And through today’s research, I’ve found that there is a link to lung/chest pain and Endo on the diaphragm.
  6. I poop at least once a day now
    1. Part of my amazing new poop schedule is due to my new diet, BUT many women with Endometriosis also suffer from chronic constipation (or diarrhea).  I’d sometimes go 3-4 days without pooping.  Suffering from the pain and bloating that came with it.  Sometimes stool softeners didn’t even help.  During my surgery, my doc found my bowel had connected to my uterus by adhesions, and also removed implants from the surface of my bowel. And since, I’m a poopin’ machine! Yay!
  7. I no longer have firey, stabbing, tearing pain when I poop
    1. Again, I thought this pain of poopin’ was considered normal.  Sometimes it was agony, even when I wasn’t constipated.  Felt like someone where stabbing me in the gut over and over again.  And I was NOT about to discuss my bowel movements with my doctor.  Why would I? Everybody poops.  I’m sure it hurts everybody when they poop; right? Wrong. This change has almost been as spectacularly amazing as the decrease in my period cramps.  A complete reversal. Oh my god.  Pooping is a joy!

A huge part of me is terrified that this relief is temporary.  But I’m trying to remain positive and think good thoughts.

Anyway, now that I’ve shouted to the heavens about my bodily functions and thoroughly grossed you out, I’m hoping that surgery (or other efforts) have drastically affected your pain as well.  I’d love to hear about it in a comment below.

Resources:

Center for Endometriosis Care

EndoResolved

Mayo Clinic

MedlinePlus

Camran Nezhat, M.D.

U.S. National Library of Medicine

U.S. National Library of Medicine – 2nd link

WebMD

WomensHealth.gov

*Sunday is “Reader’s Choice” where my readers, friends, and family get to suggest a topic.  Today’s topic came from an my best friend, Rosie, who encouraged me to write about what’s changed physically since my surgery. What doesn’t happen anymore? What’s better?  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 (or in this case, attorneys). Always.  Yours ~ Lisa

Endometriosis Adhesions : what are they?

taffy pulling machine

A lot of women who suffer from Endometriosis also have adhesions.  You may have heard the term “adhesions” but just don’t know exactly what they are, or what they do. Well, I’m here to help!

After my first excision surgery in June of last year, I was told that I had adhesions which needed to be cut and/or removed. What the heck?  My doctor described it as scarring which acted like spider webs, stretching from organ to organ, entangling my organs, or even stitching two organs together.  These restrictions are known to cause intense pain if the organ’s movements or function are limited in any way. They may also cause infertility if the Fallopian tubes are blocked due to the woven-web of adhesions, preventing the egg from traveling to their wonderful, spongey, wet, warm home.

My bladder and my uterus were stuck together by adhesions. As were my bowel and uterus.  Those are the two most memorable “knit togethers” that I can recall from my surgery.  But there were numerous others he removed. Since my surgery, the “normal” pain I had associated with going to the bathroom is GONE! I believe my adhesions caused my bladder and bowel to be pulled funky, which caused pain every time I had…to go.

Okay, enough with the personal TMI, on with the explanations & research!

What are Adhesions?

Adhesions are the body’s “repair cells” trying to fix internal damage, but causing more of a mess.  These “repair cells” may form on the surface of an organ, but come into contact with another, forming a band or bands of scar tissue that grow within the body, adhering two or more organs together. Think of spider webs, or better yet : a strand of sticky taffy! (Mmmm, taffy…)  They vary in appearance, resembling thin plastic bands or even thick fibrous bands of tissue.

They can also obstruct organs, such as the bowel, ovaries, or Fallopian tubes, from functioning properly.  They can be found anywhere within the body, but frequent the abdomen, heart, spine, and hands.  Adhesions have been known to form in joints and eyes as well, and can continue to tighten or grow over time, causing further obstructions, restrictions, and pain (by pulling organs where they shouldn’t go, or by even pulling on nerve endings).  Adhesions above the liver may even cause pain when deep breathing.

What Causes Adhesions?

Adhesions form from inflammation (i.e., Endometriosis!) or after the body sustains injury (i.e, damage caused by chemotherapy, radiation, cancer, infections, surgery, or other bodily harm).  A 2017 study stated that Endometriosis and pelvic inflammatory disease are the most common causes of non-surgical adhesions in women.  Other causes in either males or females can include Crohn’s Disesae, diverticular disease, and abdominal tuberculosis.  That same 2017 study also states 90% adhesions of adhesions develop after abdominal surgery.  Adhesions are also commonly formed following surgical procedures near the incision site, but it has been shown that laparoscopic and/or robotic laparoscopic surgeries are less likely to have adhesions growth due to surgeries. Any internal trauma or damage to the body may cause an adhesion to begin to grow.

How Do You Diagnose Adhesions?

Common symptoms of adhesions may be constant bloating, abdominal cramping, constipation or diarrhea, a bowel obstruction, nausea, infertility, painful sex, or painful pooping.

Unfortunately, no tests or x-rays diagnose adhesions.  However, ultrasound, CT, or contrasted imaging studies may show obstructions or displacement caused by adhesions.  Surgery appears to be the only true way to diagnosis the presence of adhesions.

How Can We Remove Adhesions?

So far, surgery to remove or disconnect the adhesions appears to be the only “removal” option. Your surgeon may also choose to coat the adhesion site with a barrier medication, with the hopes to discourage any new or future adhesion growth in that particular location. Unfortunately, adhesions almost always reform. Since many may not cause pain or risky obstructions, most adhesions are left alone and not operated on.  The risk of regrowth many influence the decision to surgically destroy adhesions.

Any Non-Surgical Intervention for Adhesions?

It appears that surgery is the only option if adhesions are causing pain or blockages/restrictions. But that doesn’t mean we can’t pamper our adhesions. I know of many EndoSisters who do routine stretches and yoga to help keep their adhesions “limber,” so to speak. There’s the Wurn Technique, which has given many people relief from adhesion pain. Maintaining a healthy fiber intake may help with constipation.  Muscle relaxers may be beneficial if you suffer from adhesion-related abdominal cramping.  Every person is different, as are their adhesions.  Only you know your body, and only you know how you can or cannot stretch. Tread lightly…

How Can We Prevent Adhesions?

I’m not really sure.  Adhesions may form due to our illness, arthritis, surgery, or a plethora of other reasons.  Many women swear by Serrapeptese or Wobenzyme (a supplement) to prevent and/or maintain adhesions growth.  If you choose to try these supplements, please do your research and have an extensive conversation with your physician.

**Updated March 25, 2019**

Resources:

www.adhesions.org

Annals of Medicine & Surgery  (2017; Article) Abdominal Adhesions: A Practical Review of an Often Overlooked Entity

www.emedicinehealth.com

www.medicinenet.com

MedLine Plus

~ 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