There was a cancellation!

Untitled-1 copy

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

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

My Mum can still join us!

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

Best news ever.

 

Four Years Ago Today…

fb_img_1474480396368
Sept. 2016

June 30, 2014: a day I went in to have a cyst removed from my ovary and instead awoke to a diagnosis of Endometriosis.  Answers.  Vindication.  My years of pain had a name.

So, I celebrate this day.

I am writing this on Friday, June 29th since I will be away from my computer on Saturday.  And today (Friday) I just scheduled my third excision surgery.  It will take place on August 15, 2018…almost two years since my last surgery.

June 30, 2014: D-Day (yep, Diagnosis Day); performed by Dr. Mel Kurtulus at the Scripps La Jolla Hospital.

September 21, 2016: Surgery No. 2; performed by Dr. Mel Kurtulus at the Scripps La Jolla Hospital.

August 15, 2018: Scheduled Surgery No. 3 (with the possibility of being sooner if there is an opening in the hospital’s schedule); to be performed by Dr. Mel Kurtulus at the Scripps La Jolla Hospital.

This blog wouldn’t exist without the events that took place on June 30, 2014.

I wouldn’t be seeking answers.  Wouldn’t be honoring my body.  Wouldn’t be connecting with others.

Our Bloomin’ Uterus support group wouldn’t exist.

There would be no annual walks or monthly get-togethers.

I would have no idea about the other women who suffer with me.

No camaraderie.

No support.

 I would still be alone, thinking my pain was normal and that I was weak.

And now I know that I am none of those things.

I am surrounded by Sisters and family.  Warriors!  Our pain is anything but normal.  And none of us are weak.

My life has been made better by being told I have a chronic, incurable illness.  And I have met some incredibly strong people because of it.  May we continue to hold each other high as we make this Journey together.  It’s not easy.  But we have each other.

So, celebrate today with me.

 

Tips for Surgery Day & Recovery

images

Have an Endometriosis surgery scheduled?  Here’s a list of things a few of my EndoSisters and I recommend having handy!!  If you’d like to add something, please leave a comment below. 🙂

In Your Purse:

Chapstick

Lozenges (to soothe that post-surgery throat)

Snacks for afterward, especially if you have any food allergies or intolerances.

Have ready in the car for that drive home:

Blankets

Bottle of water

Chewing gum (it has helped some gals with nausea on the drive home)

Ice packs

Overnight bag with clothes, toiletries, etc (just in case you have to stay in the hospital overnight)

Pillows

Sleep Mask (one of those eye covers; you may get ill with all of the movement of passing cars and landscape)

Travel pillow (for stuffing between your stomach and your seatbelt!)

Vomit bag

For Home:

A friend or family member (seriously for like the first 3 days…don’t be alone. You don’t know what your body can and can’t do…and you should be resting)

Comfy clothes. Nothing that binds. Think giant t-shirt, moomoo, or even naked!

Fiber!! (oh man…you need to keep poopin’)

Footstool (to help get in and out of bed)

Gas-X (helps break up the surgery gas that’s floating around inside your body still)

Grabby-stick-thingy (you know, that old people use to get stuff off of the top shelf)

Heating Pad

Ice Packs

Pads (yep…you may be bleeding afterward

Pillow with armrests (keeps you propped up, while lounging, and keeps pressure off your abs.  What am I talking about?  Look here.)

Pre-made, easy meals (soups, crackers, etc.)

Prescriptions (painkillers AND anti-nausea medication)

Stool softener!!!!!

Squatty-Potty or something similar

Tape your cell phone charger to your headboard (you don’t want to bend down to get it!)

Walker (yeah, with tennis balls and everything – seriously helps you get around…not to mention sit/stand)

Questions for your Doc: Pre- and Post-Op

question-mark-2314121_960_720

Going in for a surgery for Endometriosis?  Not sure what to ask? Here’s a list of questions you may want to bring with you.

Some of these may seem like common sense…but it’s good to have them written down to ask. You may forget while overwhelmed or in a fog! Feel free to add to these!  Have any suggestions you’d like me to add? Drop me a comment below. 🙂

Pre-Op Appointment Questions:

What will you do if you open me up and see Endometriosis? (Ask this, because many women have their diagnostic surgery and NONE of the endo is removed – just a confirmed diagnosis and a referral to another doctor to deal with the Endo).

Do you plan to excise (cut out) the Endo or burn (ablation) them? (Excision is considered the best way to deal with it as ablation may not get all of the lesion. Some surgeons only burn away the lesion if it’s in a difficult location to cut. Some surgeons ONLY use ablation and do not cut away the lesions.)

Will you remove adhesions? (Adhesions are scar tissue, oftentimes spider-web like and can twist organs or weave them together).

What’s the worst case scenario?

Will you take photographs or video? If yes, may I have a copy? (if you get photographs, make sure they’re labeled so you know what you’re looking at)

If you find Endometriosis on other organs, such as my bowels, bladder, liver, ureter, diaphragm, etc., are will you be able to remove it? Or will you call in a specialist to assist with the surgery? Or will a second surgery need to be scheduled to handle it?

May I have any painkiller and/or anti-nausea medications filled prior to the surgery date?

Anything you can do to lessen the gas pain that occurs in my right shoulder? Tilt my head? Warm gas? Expel more gas before closing me up? What are the complications of any of these methods? (This may help with the shoulder pain many women complain about after a laparoscopy.)

How long do you expect the surgery to last? Any way someone can update my (person who is in the waiting room) as they wait in the lobby once surgery begins? (My first surgery they expected surgery to last 1.5 hours and it lasted 4; nobody updated them on status and it was stressful and worrisome for them.)

Any “best” position to sleep while recovering?

Anything I can do to make this surgery easier on you?

Before Discharged from Hospital Questions:

What did you find?

Is it normal for my incisions to bleed or ooze?

How long shall I keep on the bandage for the belly button?

How long shall I keep on the bandages for the small incisions?

What do I do if a stitch/staple/glue edge sticks out?

When can I shower?

When should I be worried if I don’t poop?  Three days? Less? More?

Make sure you understand the restrictions while healing. Every surgeon is different. You may not be able to lift something over a certain amount of weight for a few weeks, etc.

Make sure you get the telephone number for the Nurse or Doctor in case of emergencies. They generally have it written on a sheet of paper. Put that somewhere handy!

Post-Op Visit Questions:

May I have a copy of the photographs/video taken during surgery (yeah, I know we asked that in pre-op…but no harm at your post-op)

What Stage of Endometriosis do I have? (there are four stages…each stage depicts a level of infiltration, but not necessary dictates your levels of pain. You can have Stage I Endo with SO MUCH PAIN or Stage IV Endo with no pain whatsoever. It’s just something good to know.)

How long until we can have sex? Swim? Go to gym? Return to work?

Now what?

**Updated July 11, 2018**

When do you decide … it’s time?

So, I have a very important question for you, my Readers.  I value your input and feedback. I always have.  But now I need your advice…

When do you know when it’s time to go back to your doctor and let them know that your pain is returning, that you’re afraid your Endometriosis is back with a vengeance, that it may be time to begin pursuing yet another surgery?

Yet, here I sit afraid that it’s still all in my head.  That I’m blowing my pain out of proportion.  That I’ve lived without it as intense for months and am now not used to it and am labeling it as large, debilitating pain.

And, as I type that, I know how silly it sounds…because I honestly feel that I’m not blowing it out of proportion.  That I upgraded from Naproxen Sodium to Tylenol 3 with Codeine because the pain is getting that much worse.  That I sleep with a heating pad on, just so I can try to sleep…and I’m not even on my period (yet).  I’m due any day…

These thoughts keep me awake at night.  And greet me in the morning.

I have so many things that I WANT to do.  I want to plan and enjoy a one-week honeymoon with my husband.  I want to go to Burning Man next year (which requires all of my vacation time).  I want to visit family in Arizona…but here I sit three-quarters of the way through 2017 and I’ve only got two vacation days to my name. I’ve used up the rest and all of my sick time on calling in with cramps, or taking a fun 3-day weekend here or there to be with my husband and friends.  Two vacation days…for the rest of the year.

Definitely not enough for a surgery in 2017.  And I don’t want surgery in 2018 because I absolutely want to return to the Desert for two weeks with loved ones.

So I throw my hands up in the air…and analyzed my pain journals for this year.  Want to look at them with me?  Each month recently, my pain has gotten progressively worse, particularly on the right side…

2017…my pain journal.  The red shapes indicate the location of the pain and/or cramping.  BM stands for Bowel Movement.  GI is gastrointestinal. The #/10 stands for the severity of pain, on a scale of 1-10.

January:

jan

February:

feb

March:

march

April:

april

May:

may

June:

june

July:

julys

August (thus far…):

august copy

 

If you were me, would you call your doctor and at least request a consult and an ultrasound?  And go from there?  Or would you just suck it up and continue to pop pills and lose sleep and *hope* it goes away?

I know it won’t go away…it’s not what the disease does…

But I hope it does.

And I want to cry just typing this.

 

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