What recovering from laparoscopic surgery was like for me

recovery

So, September 21, 2016, was my second Endometriosis excision surgery.  It was done by robotic-assisted laparoscopic surgery.  What does that mean?  My surgeon sat at the controls of console and directed teeny tiny robot hands inside my belly.  I had forgotten a lot of the recovery process from my 2014 surgery, so decided to take notes every day…so that way if I ever go back in, I sort of know a timeline!

I meant to publish this a long time ago…but, well…the dog ate my homework?

A “brief” little note – I tracked my pain, symptoms, diet, milestones, and whatever for a week, but as of today (8/16/17) I could not find the rest of my notes.  So, we get four days.  And I’m most certainly going to refer to this if I ever have to go back in for another surgery…

 

Day One: Wed, 9/21/16

Shortly after getting home, I was helped into bed on an incline of pillows.  Had immediate right and left shooting shoulder pain (10 out of 10).  Did a little bit of screaming.  Removed the pillows to see if lying flat would help…made it worse.  Did a little bit more screaming (still not as bad as my 2014 surgery).  Mom and Jim danced around the house trying to find the best solution for my sleeping arrangements and it turned out to be the tall-back computer chair, a pillow on the seat, a pillow on the back, the ottoman pulled close, a pillow on the ottoman.  Once I was seated, another pillow behind my head, and a pillow tucked underneath my legs (between the ottoman and the seat) to support my knees.  Quite the plushy palace…little did I know it would be my bed for the next three days.

6:15pm, Percocet.

6:20pm, GasX

9:05pm, vomited (clear bile) in the toilet on all fours.  Not an easy feat. Note: cool washcloth on bare back is heaven when hurling.

9:26pm, lower ab pain (3 out of 10) and lower back pain (5 out of 10)

9:40pm, crackers

9:45pm, Naproxen Sodium

10:20pm, lower rib pain (3 out of 10)

10:45pm, lower rib pain (2 out of 10)

10:55pm, nausea, but no vomiting

11:15pm, GasX

I didn’t make any records of sleeping.  I know we did a lot of walking around that first day.  I also remember it not being as horrific as my first surgery.  And all but two of the notes are in my own handwriting, so couldn’t have been that wonky…

 

Day Two: Thurs. 9/22/16

1:20am, walked around

5:30am, incision pain (7 out of 10) woke me up, walked around, took Percocet

5:35pm, GasX

6:25am, walked around

6:50am nausea, but didn’t vomit

7:05am, ginger turmeric tea to help with nausea, took a stool softener

7:45am, vomited (bile) in toilet on all fours

7:46am, vomited (green liquid) in toilet on all fours

8:30am, ate small portion of scrambled eggs

8:35am, right lower rib pain (3 out of 10), lower back pain (4 out of 10)

8:37am, ate butternut squash soup

11:37am, GasX

12:00pm, nausea without vomiting

3:15pm, ate a few raspberries

3:25pm, ate crackers, belly button pain (2 out of 10), right lower back pain (4 out of 10), right lower rib pain (3 out of 10)

4:35pm, right hip pain (6 out of 10)

6:05pm, right hip pain (8 out of 10), left hip pain (5 out of 10), lower rib pain (6 out of 10)

7:10pm, Zofran and ate tomato soup

7:40pm, Percocet

7:42pm, GasX

9:15pm-11:45pm, good sleep

Day Three: Friday, 9/23/16

1:30am, left hip pain (7 out of 10)

1:45-3:00am, sleeping

3:30-5:05am, sleeping

5:10am, belly button pain (5 out of 10), left hip pain (5 out of 10), deep breaths and  yawning hurt lower ribs (5 out of 10)

6:55am, lower rib pain (6 out of 10)

7:00am, GasX, stool softener

7:05am, ginger tea with honey and coconut oil

7:30am, left hip pain (8 out of 10)

9:00am, ate 2 scrambled eggs

9:10am, ate handful of blueberries

9:25am, Naproxen

11:05am, right hip pain (7 out of 10), upper back pain (4 out of 10)

11:30am, ate soup

12:20pm, ate crackers

1:00pm, GasX

2:00pm, lower ab pain (3 out of 10). Shifty gas or poo?

2:15pm-4:30pm, nap

4:45pm, ate a few blueberries

5:00pm, my first fart (no pain)!

6:10pm, ate tomato soup with crackers

6:35pm, stool softener and GasX

7:00pm, lightning bolt pain at belly button (9 out of 10)

7:50pm, lower right rib pain (6 out of 10)

7:55pm, left shoulder pain (5 out of 10)

8:20pm, lower rib and side pain (8 out of 10)

8:30pm, ate crackers

9:30pm, right hip pain (9 out of 10), but had to pee

9:40pm-2:30am, sleep

Milestones: Able to sit and stand alone.  Able to fart!  Able to lay flat!!

 

Day Four: Saturday, 9/24

2:30am, woke to (do something?)

2:30-4:45am, sleep

4:45am, woke up with cat walking on belly button (10 out of 10)

5:00am, Naproxen Sodium

5:25am, GasX

6:00am, ate crackers

6:40am, farted with no pain

6:45am, stool softener

7:30am-9:05am, nap

9:10am, farted with no pain

9:20am-11:00am, nap

11:25am, lower ab pain (4 out of 10)

11:45am, ginger tea with honey.  Lower ab pain (2 out of 10)

12:10pm, ate tomato soup with crackers.  Took GasX.

12:15pm, right ab pain (6 out of 10)

12:25pm, farted with no pain

12:35pm, lower right ab pain (4 out of 10)

1:05pm, lower right ab pain (6 out of 10), farted with pain (6 out of 10)

1:07pm, Naproxen Sodium, ate crackers

2:00pm, lower right hip pain (5 out of 10)

2:10pm, belly button pain (8 out of 10)

3:10pm, left ab/incision pain (8 out of 10)

3:15pm, GasX

3:47pm, left lower hip pain (8 out of 10)

3:50pm, left ab pain (8 out of 10), lower back pain (6 out of 10)

Milestones: Showered alone.

 

So at least I know these things:

  1.  Expect that shoulder pain when I lay down flat (this happened with my first surgery, too)
  2. Eat things nice and easy.
  3. Don’t expect a lot of sleep.  It may take three days before I can lay down flat.
  4. And I DO remember this – it was seven days before I pooped…and needed the assistance of a doctor-commanded enema.  All the stool softeners and easy diet and lots of water weren’t enough to combat the constipation-inducing meds…*sigh*
  5. And most importantly: don’t be alone for the first three days in case I can’t sit/stand by myself.  This includes using the bathroom *double sigh*

What did you learn from your past recoveries?

 

 

 

A fantastic video showing various locations and colors of Endometriosis

Untitled-1 copy

One of our local EndoSisters shared this video with us last night on Facebook and it was so incredibly awesome (gross, amazing, cringe-worthy, “ah ha!” worthy) that I wanted to share it with you today.

In 2014, Dr. Xiaoming Guan published this video on Youtube.  It may be too graphic for some, but it’s very educational.  If you have photographs from your surgeries, pull them out and compare!  It’s fascinating!  You may even recognize some locations where your Endometriosis lesions were (or still are) located…or recognize the phrases from your op report(s).

To quote my favorite cartoon growing up, “And knowing is half the battle.”

 

Endometriosis: Excision vs Ablation

endo-graphic-soward-2017
Detail,”The Endo-Graphic” by Sarah Soward. http://sarahsoward.com/projects/endometriosis.php

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

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

Is one better than the other?  That’s purely a matter of opinion, but the popular opinion is, “yes!”  There are countless studies that agree.  But why?

Ablation only affects the surface of the lesion by destroying the tissue.  It may leave unseen portions of the disease beneath the surface, which may allow for speedy recurrence of Endometriosis growth and symptoms.  Ablation may also cause further scar tissue to develop – you are literally burning or melting the lesion away.  Other names for ablation may include cauterization, vaporization, and fulgeration.  Terms for some of the tools that may be used during ablation can be electrosurgical devices, thermocoagulation devices, lasers, a harmonic scalpel, helium or argon plasma therapy, and the cavitron ultrasonic surgical aspirator (CUSA).

Excision (sometimes called resection) removes the entire lesion, as well as a healthy bit of flesh around the lesion.  The surgeon hopes to remove all traces of that particular lesion, in the attempt to make recurrence more difficult.  The more lesions that can be excised, the better chances you may have at a longer symptom-free life.  Tools can be cold, hard cutting tools such as scissors or even lasers (but…but…heat energy – burning!?!) – nope, lasers are often used for excision surgeries to cut around the lesions and harvest it out whole.

You may be interested to go back, grab a copy of your operation report, and compare these tools and techniques.  What exactly DID your surgeon do?  Or you can use this information to better ask questions of your doctor prior to a pending surgery.

F7AYUAJG5FR5GA7.LARGE

Imagine an avocado (mmmmm avocadoooo) – you slice that bad boy open, remove the pit, and discover a bit of browning on the surface.  Nasty bruises and icky…But, there’s plenty of good avocado still to be enjoyed.  If you only scraped off the surface of that brown spot, you’d likely still have MORE brown spot beneath it – that rotten little bruise extends deeper into the avocado flesh (delicious green flesh).  You’d want to take a spoon and scoop out the brown spot in it’s entirety, and enjoy the fresh avocado that you have remaining.

PIA18850_hires

Also, think of an iceberg.  The tip is only visible above the surface of the water, but the iceberg can extend for quite a long while beneath the waves.  Endometriosis lesions do the same.  Who knows what’s lurking beneath the surface.  And if the entire iceberg – um, Endometriosis lesion – isn’t removed, it may resurface.

Studies have shown that women who undergo excision surgery of Endometriosis lesions have less painful periods, less painful bowel movements, and chronic pelvic pain than women who underwent ablation.  Studies also indicate that painful sex levels remain about the same for both excision and ablation surgeries.

Women who undergo ablation surgery for Endometriosis have a 40-60% chance of recurrence, sometimes within months of surgery.  In contrast, 75-85% of women who undergo excision surgery claim long-term relief.    I personally have undergone two excision surgeries, within two years of each other.  Some of my Endometriosis was in similar areas of my body as my first surgery, but some was found in new locations…My surgeon opted instead of excising (or even ablating) a lesion on my diaphragm, to leave it there for safety’s sake – nobody wants a perforated diaphragm! Excision surgery may not be ideal in every situation – and a skilled surgeon will be able to know when, and when not, to cut.   Even then, it may not work and you still may be slated for a future surgery.  The only guarantee with this illness: there is no guarantee.

In the end, it’s not all about the type of surgery or the tools used – it boils down to the skill level of the surgeon and their method of dealing with Endometriosis.  How competent are they? Do they do excision or ablation?  How often do they perform excision surgeries?  What’s their recurrence rate among patients?  Ask questions! Get answers!  Be comfortable and confident with your surgeon’s skills.

And, as always – there is no cure for Endometriosis.  We may get relief from medication, supplements, lifestyle changes, or even surgeries, but there is always, always, the chance for recurrence.  Listen to your body.  And don’t be afraid to head back in for another consultation…

I’d like to extend a special Thank You to Sarah Soward, a local artist and EndoSister who granted me permission to use a detail of her Endo-Graphic as our cover photo for today.  To view the entire image and all of the information contained there, please visit her site.   You can also view and purchase her other artwork here.

Resources:

Center for Endometriosis Care

Diamond Women’s Center

Endometriosis Australia

Endometriosis Foundation of America

EndoSupport.com

Eric Daiter, M.D.

Nezhat.org

Sarah Soward

The Journal of Minimally Invasive Gynecology – (Unedited Manuscript; April 2017) Laparoscopic Excision Versus Ablation for Endometriosis-Associated Pain – Updated Systematic Review and Meta-Analysis

Vital Health Institute

~ 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

Endometriosis & Perineum

Protoreaster_Nodosus
It’s the only photo I could think of that wasn’t … vulgar

Well, this was a first for me.

I’ve read numerous studies of Endometriosis developing in scar tissue after c-sections or other abdominal surgeries, but this one caught me by such surprise that I wanted to share it with you!  It’s important to any EndoSisters who may have delivered children naturally and have complaints of pain…”down there.”  Read on!

A 38-year-old woman had birthed a baby vaginally 12 years ago, undergoing an episiotomy.  Three years ago she developed pain on the right side of her vulva.  The pain increased during her periods.  Two years ago, that painful spot began to swell. And swell.  And swell until it was an inch long and an inch wide and turned into a hard, discolored bump.  None of her doctors were able to offer her answers or relief.  So, further investigation was needed.

Where was this swelling?  You know sometimes women who give natural birth have to have their (insert grimace here) vaginal openings…made wider in an effort to avoid tearing?  It’s a procedure called an episiotomy – a small incision through the muscular tissue of the vaginal opening, down the perineum toward the anus.  In 12-year-old giggle-girl terms: they slice open the gooch; the taint.  Okay, let me compose myself again…

Anyway, this poor woman had developed an inch-long/wide bump in her episiotomy scar which was painful RIGHT THERE!  Could you imagine wearing jeans? Sitting down? Even just walking? Ugh…

An MRI was taken and it was discovered that the lumpy-bumpy stretched along the perineum and was also involved with the puborectal muscles ( little sling that encircles the rectum – if you’ve seen the Squatty Potty ads on TV or Youtube, it’s the little rubberband muscle that relaxes/released your colon-goods) AND her anal sphincter.  Surgery was ordered and they excised the mass, as well as 1cm of healthy tissue surrounding the lump.  They also reconstructed her sphincter (thank goodness).  Biopsies of the tissue confirmed the suspected diagnosis of scar tissue Endometriosis.  And six months after her surgery, she was still symptom-free.  There was no prior history of Endometriosis mentioned in this article.

I was flabbergasted.  I know Endo can develop wherever and I really shouldn’t be surprised – but all the hullabaloo I’ve read about is women developing scar endometriosis after c-sections.  Just know that it can develop…um…elsewhere…even if you haven’t had a c-section

This just goes to affirm my beliefs that if you have a hard, painful bump *anywhere*, please talk to your doctor and pursue answers.

And happy Tuesday! ❤

Resources:

Babycenter All About Episiotomy

Panacea Journal of Medical Sciences – (April 2017; Article) A Rare Case: Episiotomy Scar Endometriosis with Anal Sphincter Involvement

~ 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

Endometriosis in the psoas major muscle

768px-psoas_major_muscle11

An article was published on October 30, 2016 in the International Journal of Clinical and Experimental Medicine, which caught my interest.  We know that Endometriosis can grow in a lot of places other than the reproductive organs and pelvis.  This study found Endometriosis growing within a muscle: the psoas major muscle.

The pso-what-is muscle? Well, that’s what I said.

Psoas_major.gif

It’s a pair of muscles that run from the lumbar spine, along the back of the abdomen, and end inside the hip area. It helps flex our hips, aids our walking and running, and can improve posture.  In some places, it’s as thick as a wrist!  As a side-note, weak psoas muscles can cause back pain, hip pain, limited movement in the hips, tight/deep pelvic pain, belly aches, constipation, and a twisted pelvis.  Dr. Axe offers some tips, tricks, and stretches to help strengthen your psoas muscles.

Okay, now back to the study!

A 49-year-old Chinese woman was admitted to the hospital because she had increased CA-125 levels.  If you’ve followed my previous blogs, you’ll remember this could be an indication of the presence of Endometriosis. Seven years prior, she had a hysterectomy and oopherectomy (removal of her right ovary) – she had a uterine myoma and ovarian Endometriosis.

After screening and testing, the doctors found a mass in the left side of her psoas muscle and thought she had a tumor.  She didn’t have any of the usual signs and symptoms of Endometriosis.  She was discharged from the hospital (at her insistance).

Three months later she returned for an MRI.  The mass had grown by 3cm and was also involved with her iliac vessels.  Her CA-125 levels were still increased.  And her physicians needed answers.  An exploratory laparotomy was performed and the mass was visualized in her psoas major muscle.  It was 10x10x8 cm and was inside the muscle tissue.  They continue to fear it was a tumor.

Rather than remove the mass in its entirety, a portion was removed and biopsied: confirmed as Endometriosis.  She received more than 3 months of Lupron Depot and the remaining mass decreased in size and her CA-125 levels stabilized.  The authors surmise the lesion may have transplanted during prior surgeries and hope this case report sheds further light on the illness.

Yet another example of extra-pelvic Endometriosis, as well as post-hysterectomy Endometriosis.  Here’s to hoping this case study continues to push the medical and scientific community into further research and greater funding toward better understanding Endometriosis – and one day finding that much-needed cure.

Resources:

Dr. Axe

International Journal of Clinical and Experimental Medicine – Article (Oct. 2016) Endometriosis in the Psoas Major Muscle: A Case Report

Yoga International

~ 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):

14355653_10208722291987139_3312204182574191727_n

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

 

My upcoming surgery

 

wikipedia-davinci
Photo courtesy of Wikipedia

So, Wednesday is the big day.  I was talking to my Mum last night and she asked me what exactly my upcoming surgery entailed.  Figured I’d share it in case you didn’t know.

Endometriosis lesions (also called implants) grow wherever they damn well please inside the body.  My brain interprets them much like mushroom spores that *poof* and attach to wherever they land and grow.  However, much like an iceberg, more than just the visible tip exists beneath the surface.  Some people liken it to an invasive cancer, although not fatal.

There are a few different ways different surgeons handle removing Endometriosis:

wikipedia-endo-lesions
Those dark blotches are Endometriosis.  Photo courtesy of Wikipedia

Burning it away.  The surgeon destroys the lesion/implant by burning them, much like you would freeze or burn a wart.  Often times, this does not destroy the entire implant and may lead to the development of more scar tissue and regrowth of Endo.

wikimedia-shaving
Photo courtesy of Wikimedia

Shaving it away.  The surgeon again destroys the lesion/implant by cutting off the top surface of the implant, similar to the removal of a mole or skin tag.  This, again, may lead to the regrowth of Endo.

flickr-melon-balls
Photo courtesy of Flickr

Cutting it away.  The surgeon removes the lesion/implant by not only removing the visible surface of the implant, but by removing some of the healthy tissue around and beneath the surface; in the hopes of removing the entire implant and slowing the rate of regrowth.  This is considered by most experts as the way to do it correctly.

flickr-taffy-puller
Photo courtesy of Flickr

My surgeon may also run into adhesions, scar tissue which forms spider webs or rubber bands around the pelvic cavity, pulling organs out of place or sticking them to one another.  These adhesions will need to be removed and treated with a barrier medication to prevent immediate reformation.

It is not an easy surgery, sometimes taking between 1-7 hours to complete.  My 2014 surgery took four hours.  It’s not as simple as removing tonsils or repairing a broken bone, although I’m certain those are not easy either.  It is extensive, requiring great focus and skill on behalf of the surgeon.  And due to the complexity of the damage and repair done, recovery can take several weeks.

During my first surgery, Endometriosis lesions/implants were found on my Pouch of Douglas (a void between your uterus and your rectum), my ovaries, my liver, my diaphragm, the lining of my pelvic cavity, my left fallopian tube, and on the scar tissue throughout my pelvic cavity.  My surgeon was not able to remove the Endometriosis from my liver due to the risks involved.

My uterus was also stuck to my bladder and my bowels, my bowels also stuck to the left side of my pelvic wall, and my left ovary was completely lost within the knotted mess of Endometriosis and scar tissue.

Once my doctor excised (cut out) all of my Endometriosis that he could and freed up my organs and removed the scar tissue, he treated certain areas with a barrier medication called Seprafilm, in the hopes to prevent the adhesions from immediately redeveloping.  I know he will do the same this time around, too.

There. If you were curious what surgery I was going in for, now you know. Everything will be okay.  *deep breaths*

Resources:

All the things I’ve read since my diagnosis and conversations with my doctor.

 

~ 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

Surgery: A caveat, footnote, the small print, an asterisk

untitled-1-copy

So, with surgery a week away, I met with my gyno/surgeon yesterday for my pre-op (you may have already read the details).  But as I was driving to work today, I realized I forgot to mention one important fact.  One that he mentioned to me the second I sat down in his office, before we got to the nitty-gritty.

He asked for my full attention and stated plainly that this surgery may take away my pain, it may not make a difference, or it may even make my pain worse.  He will do everything that he can to make me feel better, but he cannot promise it will.  And he asked if I understood what he just said.

I did.  And it’s true.  And I value him all the more for his blatant honesty (although I know he probably has to tell everyone that to cover his own butt).

I will repeat it:

  • It may take away my pain;
  • It may not make one lick of difference; and
  • It may make my pain worse.

It’s a fact of life.  There is no guarantee this procedure will help.  And there’s a chance that it may increase my pain.  Abdominal surgeries are notorious for causing adhesions to form, which may increase pain and discomfort.  And there’s no guarantee that the removed Endo lesions won’t return.  There is no cure.

Going into this with my head high and full of positive mojo.

2nd Surgery pending…

websiteDraft_working_09 copy
This morning I found out Surgery No. 2 is imminent, thanks to my Endometriosis. The date will be sometime in September; I’ll know more in a few days. I met with my doctor today to discuss my ongoing symptoms and worsening pain.  After a long talk and history, an a transvaginal ultrasound (OUCH), and another looooong talk in his office: he felt it’s time to peek under the hood.  I knew going in today that the surgical option was likely it. I wish we could tell if it was present in other ways.  But nope.  My CT was normal.  My US was normal.  But, as you and I both know, it may not always show up on imaging studies.  My symptom history is what convinced him:
  • Painful sex with deep penetration
  • Cramping after sex (sometimes for days)
  • Bleeding after sex
  • Right upper quadrant pain in my abdomen
  • Pain in the middle of my lower abs
  • Pain to the right of my belly button
  • Pain above my belly button
  • Pain when he pushed on those areas of my torso
  • Waking up at night screaming because of the pain in my torso
  • Examining my prior surgery photographs and seeing they line up with my present complaints of pain (diaphragm, liver).
  • Extreme bloating after exertion
  • Flare-ups after exertion
  • A change in the quality of my life, once more.
My surgeon is also my gynecologist, so he is intimately familiar with my bits. And even better? I like him. And I trust him. And he believes in removing the disease, not just burning or scraping it away…but cutting it out. And he frequents many conferences about the disease (he just returned from an Endo conference in Russia). And he TEACHES robotic laparoscopic surgeries, so he really, really, really knows what he’s doing.
He will look in all the usual spots one finds Endo (pelvic region, uterus, ovaries, fallopian tubes, pouch of douglas), but he’s also going to check my bowels, bladder, liver, and diaphragm.  AND he’ll keep his eyes peeled everywhere else while he’s in there.  If the lesions are back, I’ve no doubt he’ll find them.  And if there’s no Endo present, he’ll still remove the adhesions/scar tissue.
And I cried like a baby in his office.  A new nurse practitioner was also present, and she scrambled in search of a tissue box.  It was kind of cute watching her through my tears as she tried to non-nonchalantly reach around his desk and bookshelves, only to come up empty handed.  We talked about my fears:
  • What if it’s all in my head?
    • It’s not in your head.  We’ve already confirmed you suffer from Endometriosis.  Pain is not normal.  And Endo can come back.  You know this.
  • What if you get in there and there’s no Endo?
    • Then we’ll clean up your scar tissue.  It’s the best case scenario, Lisa.  It’d be good.
  • I feel so stupid.  Like a hypochondriac.  Like a wussy.
    • You’re not stupid.  You’ve already been dealing with the pain for at least six months.  You’ve suffered long enough already.  It’s time to clean you up.
And, of course, his incredible support just made me cry harder.  He knows about our support group and our blog.  So he was wonderful when he said, “I know you know all of what I’m about to tell you, but I’m going to tell you anyway.”  And proceeded to explain about Endometriosis’ return, how excision surgery is the “Golden Standard,” and how robotic surgery is usually the best choice.  I absolutely love my doctor.
The DaVinci robotic surgery system is nifty. The surgeon sits at a console with controls (yes, a grown up gamer system!) and controls teeny-weeny-itty-bitty robotic hands to surgically cut out my Endometriosis lesions and free up scar tissue. He can also suture with the bitty arms. Wanna see something amazing? Watch this video of the robotic system skinning a grape….
Now watch this grape getting stitched back together by robotic-assisted surgery system…
So bear with me over the next few weeks as my emotions go up and down. I may clam up and turn hermit for a while. Or I may suffer from verbal diarrhea and you won’t be able to shut me up. I may sniffle at the slightest thing. Or may just stare out in space. I don’t have any fear of the surgery; it’s the recovery I dread. It’s incredibly painful. And after my surgery, don’t mind me if I cancel things on ya. It’s not that I don’t want to go, it’s that I can’t.
I know many of you reading this suffer from Endometriosis. And many of you know people who do. Continue to spread the word about it…I was 35 years old before I’d even heard of it, yet suffered from it most of my life. If you’ve never heard of it, 1 in 10 women suffer. And it’s incurable: they cut it out, it grows back, they cut it out again, it can grow back again. I made it two years since my first surgery before popping daily pain pills…here’s to hoping for a much longer remission this time around.
All in all, I’m doing okay.  What started out as a tearful morning has turned into a kind of “get it over with already” resolve.  I’m ready.  And will let you know when my date is, once I receive word…