A beautiful breakdown of treatment options for Endometriosis

A pile of open books
Photo by Amanda George from Pexels

A new study about Endometriosis is out regarding the modern treatment of the disease.  This includes birth control, progestins/anti-progestins, GnRH agonists, aromatase inhibitors, danazol, NSAIDs, surgery, and alternative treatments. It identifies the pros and cons of each.

The study closes with this beautiful phrase:

“The pharmaceutical or surgical treatment require an individual approach and deliberated informed consent of the patient. Pharmacological treatment is only symptomatic, not cytoreductive, therefore, to remove endometriosis lesions, surgery should be performed.”

It’s uplifting to see a study bluntly state that medications only treat the symptoms, NOT the disease itself, and the Endo lesions need to be removed.  AND that each case of Endometriosis must be reviewed on an individual level.

Deliberated informed consent of the patient” means (to me) as having a fully-informed patient who is made well-aware of the pros and cons of each choice, the side effects, risks, and potential outcomes; as well as having performed their own research before agreeing to the treatment.

Even with excision, though, there’s always a possibly of recurrence or new growths. And not all physicians are skilled enough to recognize each lesion. Not to mention many surgeons still practice ablation (the burning away of the lesion, leaving rooted tissue to regrow).

Welcome to an EndoWarrior’s very frustrating pursuit for competent medical care.

I encourage you to read the study for yourself and share it.

Resources:

Journal of Education, Health, and Sport (Article, 2019) – Available Treatment Methods for Endometriosis

Ways to Better Prepare for Anesthesia

1st person view from an operating table with surgeons looking down at you with the words "Count backwards from 10, 9, 8, 7..."

My mum recently asked me to look into ways we EndoWarriors may better prepare our bodies to accept, and recover, from anesthesia of our surgeries.

For my July surgery, I cut out alcohol the second I knew I had my confirmed surgery date and waited another two weeks before having my first sip.  So, I went a month without any booze.  Why?  Just because I thought it would be nice to pamper my liver in the hopes that my body would handle things a bit easier…or smoothly…or whatever.  But did I do any research? Nope.  So, now here comes the research.

Medications, Vitamins, Herbs, Recreational Drugs

This is VERY important so I will begin with this statement.  Some medications (including birth control), drugs, vitamins,  and supplements may interfere with the efficacy and processes of anesthesia.  Please be sure to give a thorough list to your doctor of everything you’re taking the moment you learn you have a surgery date.  Your physician may have you stop taking some of these immediately.  Others, you may be instructed to stop taking a few weeks, days, or hours before surgery.

One study stated that oral contraceptives should be discontinued six weeks before surgery due to an increased risk of deep vein thrombosis (blood clots).

However, if you are interested in a homeopathic route after surgery to strengthen your body there are many supplements that are touted to boost the liver’s abilities and flush kidneys, etc.  Do your research! And…talk to your doctor before starting any supplements.

Smoking

If you smoke, try to stop smoking as soon you hear you have a surgery date.  This could be a month or more in advance.  Too much?  Try to cut out smoking at least two weeks before surgery.  If you can’t cut it cold turkey that far in advance, try hard to at least abstain from smoking a few days before your surgery.  It will alleviate a greater potential for breathing problems or complications while under anesthesia.

Booze

Alcohol may also interfere with anesthesia as well as lead to excessive bleeding during surgery.  Health24 recommends cutting out all alcohol at least a week before surgery, longer if you’re a “heavy drinker.”  And you want to keep the liver functioning at full-capacity after surgery, so avoid alcohol a week or two later.

Food

Omitting meat and dairy products before and immediately after a surgery may help with your body’s recovery.  Certain foods can cause inflammation and discomfort.  And, according to some studies, people who did not consume dairy prior to colo-rectal surgeries had a faster recovery than those who did.  A healthy diet of fiber can keep the blood from clotting, which may minimize the risk of clots occurring after surgery.  A high-fiber diet will also keep your innards a well-lubed & poopin’ machine.

In 1993, mice were given a high-fat diet for three weeks before surgery, some mice were not, and other mice were switched from a high-fat diet to a low-fat diet.  Fatty-tissue chemicals change during surgery.  These same chemicals “talk” to organs inside our body.  During surgery, that fatty tissue…and those chemicals…are traumatized, just like any other flesh being cut into.  The study found that the mice who had the low-fat diet had fewer changes in their fatty-tissue-chemical-balance than the fatty-diet mice.  It suggests that a low-fat diet before surgery may aid in recovery because of the potential of minimalized trauma to that tissue.

And a study in 1998 found that potatoes (and fresh eggplant) may make it harder for the body to break down and eliminate any lingering effects of anesthesia.  Potatoes and fresh eggplant may contain a chemical called solonaceous glycoalkaloids (SGAs) – ever cut up a potato and found green inside? That’s evidence of SGAs.  SGAs are usually found in the stems, leaves, and sprouts, but may make their way into the edible part through damage or light exposure.  The broken down layman version of the article?  Even a tiny amount of SGAs in your system can cause a delay in the body’s ability to recover from anesthetic compounds.

Drink Your Water!

Staying hydrated, before (not the morning of, unfortunately) and after surgery is always a healthy decision.  But it will also help your body operate at optimal capacity.  So, drink up.  Keep those liver and kidneys happy and healthy!

*

So what did I learn today? Probably the same things you did.  And when I do have future surgeries, I’ll:

  • Immediately talk to my doctor about my medications, vitamins, supplements, etc. to see if I need to stop anything – and the timeline to do so;
  • Do the same thing I did with alcohol that I did this last surgery: cut it out a few weeks before and after;
  • Try to better follow my anti-inflammatory diet (NO CHEEEEEESE!) and steer clear of delicious potatoes a few weeks before surgery;
  • Continue to drink lots of water.  Seriously, it’s the only thing I drink these days, besides wine and beer (haha).

What about you?  Do you do something to prepare your body for surgery and recovery? Share below. I’d love to hear it.

Resources:

American Society of Anesthesiologists Preparing for Surgery Checklist

Australian Society of AnaesthetistsPreparing for Your Anaesthetic

BBC NewsGas, Injection or Potato?

California Society of AnesthesiologistsFive Tips to Help Your Patients Prepare for Anesthesia and Surgery

California Society of AnesthesiologistsTen Questions to Ask Before Anesthesiology

Health 24Diet Preparations Before Surgery

Health24Prepare Yourself Mentally and Physically Before Surgery

Hippokratia Quarterly Medical Journal – (Article; Jan. 2007) – Preoperative Evaluation and Preparation for Anesthesia and Surgery

Juicing for HealthAnesthesia Side Effects and How to Flush Out Toxins Post-Surgery

Mayo ClinicGeneral Anesthesia

Mind Body Green Health5 Ways to Bounce Back Quickly After Anesthesia

Science DailyWhat You Eat Before Surgery May Affect Your Recovery

University of Chicago MedicinePotatoes Prolong Anesthetic Reaction

~ 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

Elephants & Endometriosis

Me holding my stuffed elephant, Mr. Victorious
Meet Mr. Victorious!

Hi guys!

I will later give you a full update of my July 18, 2018, surgery and current recovery, but first wanted to share something super important and amazing!

For those of you who may have read the title and thought elephants have Endo, alas, this isn’t that blog – I haven’t done that research yet.  But, please keep reading…

My Mum surprised me with a gift after my July 18, 2018, excision surgery: the stuffed elephant pictured above, whom she named Mr. Victorious. 🙂  And inside the bag was this incredible note, that I share today with her blessing:

“Lisa, I was in the gift shop feeling like there was something in there for me to get you.  I had no idea what it was…

Until I saw the elephant!

Elephants in areas like Africa when one finally finds water underground will let out a trumpet call that goes out for miles around.  The elephants that hear the call come running to where that elephant is and they form a circle.  Then they all stay in place and stomp their feet repeatedly.  All of a sudden, the water rises to the surface and they are all able to drink.

This elephant reminds me of you and your Endo Sisters.

You let out that call and you and your Sisters found each other.

Someday a cure will rise to the surface and you will all be able to drink.

I love you Lisa.

Mom”

Pardon me as I, yet again, grab a tissue.  It’s true, dear Sisters.  We rally together.  We are here for one another. Always.

And, Mum, thank you for such a special gift and incredibly touching words.  I will cherish your letter, and Mr. Victorious, forever. Gonna go lay back down now and continue to heal up and relax.

Love, Lisa

In a Moment of Weakness

Box of tissues

My third robotic-assisted laparoscopic surgery is now seven days away.  As I lay awake in bed last night, my mind wandered to the process:  pre-op/intake, placement of the IV, a conversation with my surgeon, trying to wear a brave face as my Mom and husband do the same, the  ride down the hallway with the overhead lights (just like in the movies), the surgery room doors opening, and being greeted by staff as they make last-minute preparations for the procedure.  Then the moment of being placed on the operating table, getting strapped in, and the anesthesiologist coming to send me off to sleep.

It’s not easy.  It’s not a grand adventure.  But, partially it IS an adventure: the hope of relief, of a returning quality of life, a possibility of normalcy.  But, let’s be honest…it’s terrifying, it’s scary, and it’s going to hurt when you wake up…and the recovery takes weeks just to function; months to feel normal.  And for some women: they never get that sense of normalcy.

So, last night as these thoughts tumbled through my brain, I reached my hand out to my husband and laid it on his hip.  Before I knew what I was saying, the words “I’m nervous,” gently babbled out of my mouth.

He reached down and stroked my hand with his, then he pulled my hand up to his heart and held it there.  I closed my eyes and silently let the tears flow.  And he just held my hand firmly against his beating heart.  Until I fell asleep.

I love him. So very, very much.

I often get asked, “How does your husband deal with your illness?”

This.  This is how.

I don’t know where I would be in this Journey without him.

Four Years Ago Today…

Photo of Lisa before June 30 2014 surgery; wearing hospital gown and cap lying in bed
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.

It May Be that Time Again…

A diagram comparing pain from August 2016 to June 2018

Oh, the thoughts you have when you’re contemplating another surgery for Endometriosis…and possibly a hysterectomy. Yes, I know it’s not a cure, but it would free me of periods and a cramping uterus. I’ve always said that if I need a third surgery, I’ll opt for a hysterectomy. I’m on the cusp of being 40-years-old…menopause is close enough at this point and my husband and I don’t want children at our age…

Last night was the eve of my transvaginal ultrasound. From my May exam, it was confirmed that I have what is suspected to be an endometrioma on my left ovary. If it’s not a chocolate cyst, it’s a dermoid cyst…which is the same reason why I went in for my first surgery in 2014…and *poof* received my Endometriosis diagnosis. And since June 7th, a new pain has manifested. A brutal pain that has reared it’s ugly head nearly every day since. And spawned me to move my ultrasound up to today. Very soon…at 11:45am, I’ll be in a chair, feet up in the stirrups, and a magic wand shoved up my hoo-haw.

Pain summary from June 2018

After thoroughly reviewing my pain and food journal, evaluating triggers and identifying patterns, and having a long discussion with my husband…I’m going to pop the question. “What about surgery?” Already. It appears I have a two-year track record for this sort of thing…2014…2016…and now 2018. That means canceling vacations and altering plans. But it’s worth it. The quality of life that excision surgery has granted me twice before has been worth it.

Then, compare my pain charts from August 2016 (right before my 2nd surgery) to June 2018. I was literally flabbergasted at the similarities…

A diagram comparing pain from August 2016 to June 2018

As I verbally vomited all of my thoughts to my husband last night, I flat out stated, “I want someone to tell me what to do. What would you do if you were in my shoes?” He looked at me…and turned it around. “Lisa, if I were an EndoSister and just told you all of this, what would you tell me to do?”

That settled it. In one fell swoop, “I’d tell you to go have a look under the hood…” And immediately I was at peace. A weird sort of peace…the resolved peace where you now have a direction to go, but the absolute upheaval of emotions of what that brings. Along with the doubts, the What Ifs, and the Emotional Rollercoaster…

“What if my surgeon says no?”

“What if they don’t find any Endo?”

“What if it’s progressed deeper into my diaphragm and they can’t see it?”

“Do I ask to keep an ovary? Which one?”

“How bad will recovery be this time?”

“How long will relief last?”

“What if it’s all in my head and I’m making a mountain out of a molehill?”

“If there’s no Endo, what IS causing my pain?”

“Maybe I have Adenomyosis and nobody knows yet.”

“What if I cause more adhesions with surgery?”

“What if it never ends?”

And as any of you fellow bloggers know: writing about this makes me feel a little better. And knowing that my words may reflect what another reader is enduring…and knowing that we’re not in this alone makes each of us stand taller.

Tips for Surgery Day & Recovery

Teddy bear wearing bandages

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.)

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

Stickman holding a bunch of questionmarks

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**

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