Share Your Story: N.

A quote that reads I was happy that finally I have my answers, but I was lost

Living in Germany, N. (who shall remain anonymous) shares her Endo journey with the world today to try to help others feel not alone as well as normalize the symptoms. She was diagnosed when she was 23 years old and shares her story with us four years later.

N.’s Journey:  

Hi, I’m from India. I started having painful cramps when I was 18 years old. It was so painful that I had to take pain killers. Then after few years, I used to get cramps before and after periods too. I used to have irritable bowel syndrome during periods too.

My father used to tell me to go to a gynaecologist but I used to think that it’s “normal”. I tried all kinds of home remedies but nothing worked. Every month, the pain was increasing. I was so done with all this that I told my mom that “I need to go to a gynaecologist, I need answers. It might be normal but I need this to be told by a gyanecologist”. My mother was still skeptical about going to a gynaecologist because she felt that they might give unnecessary hormonal medications.

Anyway, I was lucky that my first gynaecologist suspected endometriosis and told me to get ultrasound done and then she confirmed it. I was happy that finally I have my answers but I was lost. Later, I took dienogest for 1 year and then for 4 months I took Lupron injections. There was very less reduction in the size of cysts. My gyne told that I need to get my laparoscopy done which will happen in next 6 months.

In India, this is something which no one talks about and I wanted to normalize it and hence started this account.

Words of Advice:  

My only advice would be that stay strong and be positive. You’re more than endometriosis !!

I want to send a special Thank You out to N.for being brave enough to share her personal story, struggle, and victories with us today. And all of us wish you the best of luck with your upcoming surgery! Please keep us posted on the results and your recovery.

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And if YOU would like to share your story, you can do so.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

July 2018 Surgery Recovery

Photograph of Dr. Mel Kurtulus and Lisa Howard before surgery, titled Resilience; photo taken by Brandy Sebastian
Dr. Mel Kurtulus and I before heading in. Photo courtesy of Brandy Sebastian

As you may know, I like to take extensive notes during my recovery from my Endo surgeries. This helps me better be prepared in case I have another one – just to get a sense of what was normal and what I can expect next time. And who knows – it may help you…or someone you know.

A good friend of mine, Brandie, typed up my chicken-scratch notes. (Thank you BRANDIE!) BUT, the “cliff notes” version is below:

DAY ONE (July 18, 2018, took 1 Percocet, 1 Zofran, 2 Gas-X)

We got home from the hospital around 7:00 p.m. I don’t remember any of the ride home, which is probably good because it was freeway rush hour and probably wasn’t very pleasant. The first thing I did inside was pop a throat lozenge. My poor throat was sooore and tender. Then had a bowl of bone broth. My lower stomach pain was a 3 out of 10, and my belly button incision pain was a 5 out of 10.

At around 8pm, I tried to sit down for the first time. That tell-tale shoulder pain began to creep up with a vengeance (7 out of 10) and I only sat for 3 minutes. Well, that was a waste. I needed help getting up and down. I knew I’d have to sit again or lay down…but not yet. I popped a Percocet, a Zofran, and a Gas-X.

By 8:30, I had my first pee since I got home. It hurt soooooo much (9/10), but I figured that pain was likely because my bits were still tender from the catheter. By 9pm, I tried sitting on the couch again: no luck. Shoulder pain was a 9/10 and gave up and walked for the next 20 minutes. Then tried to lay down (propped up on pillows), but the shoulder pain flew back up to a 9 out of 10. Did a lot of walking and breathing. By this time, my incision pain was a 2/10 and my lower back pain was a 1/10. I just wanted to sleep, though…

By 9:35, we tried laying down again propped up by even more pillows. The discomfort was minimal. By 10:15pm, I was awake and had to walk around for an hour. I had to pee before going back to bed (again, urination pain 9/10), then I was overcome by nausea. Mom helped me on my hands and knees and I vomited (pain 2/10). I believe my Percocet pill from 2 hours earlier was still floating around in my stomach because my puke was a beautiful shade of blue. At 11:45pm, mom helped me back into bed, but I couldn’t fall asleep until 12:20-ish.

DAY TWO (Fiber; took 2 Gas-X)

Incision pain 2 – 6/10 (10/10 when struggled to get out of bed)

Shoulder/CO2 Gas pain 3 – 10/10

Lower abdominal pain 2 – 9/10

Lower rib pain 1 – 4/10

Lower back 1 – 4/10

Lower ab pain near right hip 2 – 8/10

Pain while urinating 1 – 6/10

Woke up nearly every hour still…poor Jim and Mom. And needed help getting on and off the toilet.

Was still passing some clots throughout the day.

Nothing to eat except bone broth and crackers.

Memorable Moments:

At 1:20am, I woke back up stiff and needing to walk. Dragged my husband out of bed to help me get out of bed and proceeded to walk around the house for an hour. Jim went back to bed. And Mom was in and out of sleep as I cruised around the living room using the walker. When I went to go back to bed, the shoulder pain came back a 10/10. Mom and Jim had to help me (panicked) out of bed and I had to calm down before we tried to reposition and go back to sleep. At 2:40am, we did just that. I slept off and on until 7:15am.

At 3:55pm, my first FART!

At 4:37pm, I can lift my leg higher than the bah tub rim!! I couldn’t do that earlier!

DAY THREE (Purelax; took 1 Gas-X; 1 Naproxen Sodium)

Incision pain 2 – 3/10

Lower abdominal pain 3 – 9/10

Lower back 1 – 8/10

Pain while urinating 1/10

Pain while farting 1/10

Was able to sleep for a few hours in a row before waking up throughout the night.

Ate soup and crackers. Snacked on a pickle. Small bowl of ice cream (I mean…like 2 small spoonfuls)

No shoulder/gas pain today!

Memorable moments:

7:20am, my first poop!!!!!

8:50am, although I still need help getting on and off the toilet, I was able to (carefully) pull up my panties by myself today!

12:58pm, was able to get off of the toilet by myself! But I still needed help getting down onto it.

1:01pm…oh dear god…the Enema Story. TEAM POOP! Rosie and Erin helped me. And let’s just say by sheer force of necessity, I was able to get myself onto and off of the toilet by myself…Needed the enema due to severe and constant lower ab cramping and figured it was poop. Yep…there was LOTS of poop. Throughout the day, continued to get on and off the toilet by myself! PROGRESS!

4:50pm, was able to slowly and gently walk down the stairs to check the mail with Rosie and Erin! One step at a time.

DAY FOUR (Purelax; 1 Naproxen Sodium)

Incision pain 1 – 6/10

Lower abdominal pain 2 – 6/10

Lower ab pain near left hip 7 – 9/10

Pain while urinating 1 – 2/10

Pain while farting 3/10

Still needed help getting in and out of bed.

Ate soup with crackers. Snacked on cracker. Nachos for dinner!

Memorable Moments:

10:10am, got into the shower by myself!!! FREEDOM!

4:00pm, getting better with the steps outside! Still one at a time, though.

10:00pm, FINALLY laid down flat to sleep. YES!! No pain. Although I did get myself out of bed alone…don’t do that again. Not yet.

DAY FIVE (Purelax)

Incision pain 2 – 6/10

Lower abdominal pain 2 – 5/10

Lower ab pain near right hip 2/10

Ate tomato soup with crackers. Snacked on watermelon, blueberries, dolma, and pickle. Chicken balti pie for dinner.

Memorable moments:

12:55am, got up out of bed alone to go pee! Kind of waddle around like a turtle on its back, but it works.

10:10am, got dressed in REAL clothes! Skirt, tank top, and brushed my hair!

6:50pm, Jim and I went for a walk around our mobile home park for a few blocks. It was marvelous to get out of the house. Slow going. Didn’t get far.

8:50pm, pooped again! No enema needed! And no pain!

DAY SIX (Started my period! Fiber; 2 Ibuprofen)

Incision pain 2 – 3/10

Lower abdominal pain 2 – 7/10

Lower back pain 3 – 5/10

Ate miso broth. Snacked on watermelon, popcorn, apple with peanut butter, pickles, tortillas. Dinner was a pork and (very little) cheese. Yep, my appetite is BACK!

Memorable Moments:

5:26am, woke up thinking I peed the bed. Nope, just started my Ninja Period.

6:20am, BIG poop with no pain! Yep, I’m back, baby!

9:00pm, another short walk around the park with my husband.

DAY SEVEN (Fiber)

Incision pain 2 – 6/10

Lower abdominal pain 3 – 6/10

Lower ab pain near right hip 3 – 6/10

Pain while urinating 1/10

Pain while farting

Pain while pooping 5/10

Ate broth and soup. Snacked on popcorn. Dinner was fettuccine alfredo with shrimp.

Memorable moments:

I can bend over!!!

Lower left window band-aid came off! Steri-strips still in place. Looks good!

7:00pm, rode in car to go to dinner. Speed bumps and potholes hurt my lower stomach and incisions (4/10). Had to walk around the restaurant while waiting for dinner since sitting too long hurt.

DAY EIGHT (Fiber; 2 Ibuprofen): – it’s been one week since surgery!

Incision pain 2 – 8/10

Lower abdominal pain 2 – 7/10

Lower ab pain near right hip 5 – 7/10

Ate miso broth and leftover pasta. Snacked on popcorn, dried apricots, tortillas.

Memorable Moments:

6:50am, Baku walked on my stomach. Damn cat. All incision pain 7/10.

2:15pm, I can get in and out of bed easier by myself.

11:30pm, right incision pain was an 8 out of 10 and kept me awake until 1:00 a.m.

DAY NINE (Fiber; 2 Ibuprofen)

Incision pain 2 – 3/10

Lower ab pain near right hip 2 – 3/10

Pain under left rib 2/10

Ate soup & crackers, baked beans. Snacked on Hershey Kisses. Orange chicken for dinner.

Memorable Moments:

6:12pm, can still only sit upright for 10 minutes before incision pain is a 6 – 8 out of 10.

8:10pm, went for a 20 minute walk around the park with Jim. No pain!

DAY 10 (Fiber; 2 Ibuprofen)

Incision pain 2 – 7/10

Lower abdominal pain 1 – 4/10

Pain while urinating 1 – 2/10

Pain while farting 2/10

Pain while pooping 2/10

Ate scrambled eggs with cheese, soup, leftover orange chicken. Snacked on kettle corn.

Memorable Moments:

8:15am, Able to wash my calves for the first time in the shower! And I was able to blow-dry my hair! Lost left incision band-aid in the shower. Steri-strips are in place. And my belly is much less bloated!

9:00am, still can only sit upright for 10 minutes without pain.

7:00pm, walked around the grocery store for an hour with Jim. He did all the heavy lifting, but I’m exhausted.

DAY 11 (Fiber; 4 Ibuprofen)

Incision pain 2 – 6/10

Lower abdominal pain 2 – 6/10

Pain by right lower ab near hip 2 – 5/10

Pain while urinating 2/10

Pain while pooping 2/10

Ate eggs, corn beef hash, toast. Snacked on a plout and cherries. Snacked on kettle corn.

DAY 12

Incision pain 2 – 6/10

Lower abdominal pain 2 – 5/10

Pain while urinating 8/10

Pain by right lower ab near hip 2/10

Ate rolled tacos.

Memorable moments:

Went thrift store shopping with Jim. Exhausted and napped for 2.5 hours afterward.

DAY 13 (2 Ibuprofen)

Lower abdominal pain 1 – 5/10

Pain by right lower ab near hip 5 – 9/10

Pain while pooping 1/10

Ate fried egg sandwich. Snacked on cherries, a pluot, watermelon, and cherry tomatoes. Dinner was cauliflower, beans, corn & cheese burrito with salsa.

Memorable Moments:

Spent 2.5 hours at the library. Too much sitting on hard chairs caused a lot of pain! And the Lyft ride was brutally bumpy.

DAY 14 (Fiber)

Incision pain 2/10

Pain by right lower ab near hip 1 – 3/10

Ate nachos (with very little cheese). Snacked on an apple with peanut butter. Dinner was yellow curry with chicken and rice, golden shrimp, and crab rangoons.

Memorable Moments:

Only woke up once during the night to go pee!

DAY 15

Incision pain 2 – 7/10

Lower abdominal pain 3/10

Pain by right lower ab near hip 1 – 3/10

Lower back pain 1/10

Ate sushi.

DAY 16

Incision pain 2/10

Pain by right lower ab near hip 1 – 3/10

Ate 2 eggs, french toast, and bacon. Lunch was a baked potato with sour cream and chives.

Memorable Moments:

Lost a few Steri-Strips today! Looks good.
Ran errands with brother in law: Trader Joe’s and Sprouts and Smart&Final. Minimal discomfort but exhausted. I didn’t do any heavy lifting.

Drank 3 glasses of pomegranate champagne. My first alcohol since 2 weeks before surgery!

Jim and I enjoyed a little bit of foreplay and “just the tip.” Didn’t penetrate too much and it was a lot of fun. No pain!!

DAY 17 (2 Ibuprofen)

Incision pain 1 – 4/10

Lower abdominal pain 3/10

Pain by right lower ab near hip 2 – 4/10

Pain while pooping 3/10

Lower back pain 1/10

Lower right rib pain 4/10

Ate leftover yellow curry. Snacked on a pluot. Dinner was a chicken breast sandwich.

Memorable Moments:

Vacuumed, did laundry, and changed the cat litter. It was exhausting, but I took it slow and easy and didn’t overdo anything. But…by looking at the cumulative pain scores above, I can tell I overdid it. Crap.

DAY 18 (2 Ibuprofen)

Incision pain 2/10

Lower abdominal pain 2/10

Ate two waffles with fake butter and real maple syrup.

Ate Indian food for dinner.

Memorable moments:

Enjoyed 3 glasses of white wine. And it looks like my body recovered well from yesterday’s chores.

DAY 19 (Took 2 Ibuprofen)

Incision pain 3/10

Lower abdominal pain 3 – 8/10

Pain by right lower ab near hip

Pain while pooping

Lower back pain 3/10

Ate 2 waffles, drank three glasses (small) sangria, 1 glass wine, lots of water. Bean guacamole chips, chicken sandwich, pickles, chocolate chip cookie, lentil salad.

Memorable Moments:

Today was our Endo Support Appreciation BBQ! It was WONDERFUL to see everyone, to meet their support, and enjoy their company. I’m tired, though!

Lost another Steri-Strip!

And on DAY 20: August 6, 2018, I returned to work. It was my first time driving since surgery. And it was tough. I also had my post-op appointment that day. Dr. Kurtulus removed all of my Steri-strips and everything continues to heal well.

Today is August 27, 2018, and it still hurts to sit at the computer for too long. I have to get up and stretch/walk several times during the work day.

My advice if you’ve got a surgery recovery to look forward to? Take one day at a time. ASK FOR HELP! And listen to your body.

(Updated March 28, 2019)

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?

 

 

 

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

 

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.

Questions for my Surgeon

causes

I have my second excision surgery scheduled for September 21, 2016!  I’ve put together my list of pre- and post-op questions to ask my doctor.  Do you have anything you think I should add?  Or even delete?  Thanks!! ~Lisa

Pre-Op (Appointment 9/13/16)

Please remember I need a latex-free operating room

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?

What to expect after cystoscopy?  Any possibility I’ll stay overnight?  I’ve read that a sensation of burning pee is a temporary side effect; anything else?

Would you take my uterus and ovaries, if needed?  If so, please don’t use a morcellator.

Will there be pictures and/or video of the procedure? What about of the exterior of surgery: the table or outer-abdomen ports?  I’m so curious!

What’s the worst case scenario?

How long do you expect the surgery to last?  Any way someone can update my Mom and Jim as they wait in the lobby once surgery begins?  Last time 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.

I know you found Endo on my diaphragm from our first surgery.  Is there any way to verify through this upcoming surgery that you’ve removed it all?  Or is that a thoracoscopy?  Thoughts about my liver Endo?

Can you also examine the outside of my bowels?  I’ve read that if you have Endo in your Pouch of Douglas you’re very likely to have it on your bowels.

Any other prescriptions post-op besides Naproxen Sodium?  If so, can we fill them early?

Anything I can do to make your job easier on the Big Day?

After surgery, shall we restart taking continuous birth control?

Last surgery, I couldn’t lift my right leg to get into the shower for a few days.  Is that normal?

Any “best” way to sleep while recovering?  Last time propped up on some pillows seemed to be the least painful.

 

Post-Op (Appointment pending)

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

Anything you or I can do to prevent adhesions?  Do you have any thoughts on serrapeptese  or resveratrol?  A lot of Endo gals take them and swear it eats and prevents their adhesions from growing.

What happens if you found nothing?  Referral to PCP for more referrals?

What do you find people do to try to feel better that is actually making their pain worse?

2nd Surgery pending…

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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…

Have you heard of scanxiety?

Scanxiety…?  It’s a term frequently used in the cancer community.  An overwhelming sense of anxiety before a scheduled scan to check if your cancer has come back.  Am I comparing cancer to Endometriosis? No.  I’m simply stealing their well-coined term.

For any of us Endometriosis sufferers who have had any type of relief either from surgery or medicine, there’s always an underlying fear that it will recur at any time.  The doctors tell us there is no cure.  They tell us it will grow back.  There are a few doctors and EndoSisters out there who swear that if you remove all of the Endometriosis during an excision surgery, it will not return. But even the best Endo surgeons out there have documented cases of their patients having recurrence of Endo growth.

Perhaps some get lucky and it doesn’t return.  But for many of us, it does.

And for many of us, when that old familiar feeling of pain or other red-flag symptoms come back, there’s that terrifying question, “Is it back already?”  Many women can go several years without a recurrence, sometimes decades.  A good friend of mine has her recurrence every 3-5 years.  And other friends of mine have theirs almost every year like clockwork.  And yet others, others have never felt the relief…even with surgery.

Anyway, I ramble.  What is scanxiety?

Many cancer patients have regularly scheduled 3-6 month imaging studies (xrays, ultrasounds, or MRIs) to determine if their cancer has returned after treatment.  The anxiety leading up to these appointments, and the stress of waiting for the results of the imaging studies, can be devastating.  Many patients even develop a form of PTSD due to these constant pressures.  Dr. Matthew Doolittle of the Memorial Sloan Kettering Cancer Center said, “People with more-advanced disease, more pain, or those who have suffered other types of trauma are at greater risk for developing PTSD symptoms during or after treatment.”

The days and weeks leading up to, and following, an appointment are incredibly stressful and an emotional rollercoaster for Endometriosis sufferers as well.  The pain of the transvaginal ultrasounds, fasting for blood tests, possibly having a fear of needles, the confined and loud space of an MRI machine.  What if the doctors suspect the Endometriosis is back?  Expensive surgeries, stacking medical bills, 3-6 weeks of recovery time, more prescription medication.  The thoughts are endless:

How am I going to pay my bills?

What if I lose my job?

How am I going to care for my family?

How am I going to get through this?

Will it ever stop?

Will it never end?

It’s understandable why every EndoSister I personally know goes through scanxiety before an appointment or exam: irritability, fear, depression, anxiety, worry.  And these deep, dark feelings, endless surgeries, and viscous cycle have led several Endometiorisis suffers to end their own lives.

So, yes, I’m stealing the term from the cancer community.

But how to handle it?

It may sound cliche, but positive thinking may be the first step!  Dr. Katherine DuHamel of the Memorial Sloan Kettering Cancer Center says, “Telling yourself that it’s only a matter of time before you relapse and other things that paint a worst-case scenario is not uncommon…Such unhelpful thoughts can be identified during cognitive behavioral therapy and the evidence for, and against, these thoughts can be weighed. Patients are asked questions such as, ‘What else can you tell yourself?’ and ‘How else can the situation be interpreted?”

And it has been scientifically proven that stress has an effect on Endometriosis (read more here).  So how do we try to reduce our stress levels while suffering from scanxiety?  Or at any point in our lives?  Try these tips:

Breathing: Deep, focused breathing has been shown to reduce anxiety, and calm emotions and thoughts.  There are several techniques for deep breathing, and I personally will begin using the 4-7-8 Technique (you can read more about it here).

Exercise: Physical exercise pumps up endorphins…the “feel goods.”  It may also help us forget the stresses of the day, shedding calories and stress! A win-win!

Listen to Music: Soothing music can decrease heightened cortisol levels (aaaugh, STRESS!), which may lead to relaxation and less tension.  Also, see if you can bring your personal music player to an appointment or examination.  I do this with my dentist appointments and it really helps.

Massage: Massage has been known to relax muscles, increase endorphin production, ease tension, and relieve headaches.  Massage also releases serotonin and dopamine into the body, which deepen a sense of relaxation and calm.

Meditation: A 5-minute meditation may quickly restore the peace you were feeling prior to the stressful environment.  Just get away for a few minutes in a quiet place. Sit or lay down, close your eyes, take a deep breath, exhale slowly.  Imagine yourself in one of your favorite places, feel the ground beneath your feet, imagine the scents and sounds around you.  Steady your breathing and relax your tense muscles. Let it go, calm down, relax.  Calm, collected, and ready to face what’s next.

Professional Help: If you so desire, seek the advice of a professional, such as a psychologist.  Sometimes it helps to talk to someone, and sometimes it helps to talk to a neutral, unbiased party.

TARP Method: Tune into your body’s signals, triggers, and early warning signs to help realize when your stress levels are rising.  Analyze the source of the stress. Respond by dealing with the cause of your stress, and helping calm its effects on your body (aka calm down). Prevent future stresses by developing an earlier response to stress, calming faster, and even cutting the cause of the out of your life.

Yoga: Yoga not only stretches and maintains a limber body, but also includes breathing exercises which further decrease heightened cortisol levels and helps bring a sense of peace and calm.  However, yoga for women with Endometriosis can be tricky, based on the placement of adhesions inside the pelvic area or anywhere inside the body.  Melissa Turner and Allannah Law have developed a yoga program that is intended to ease any adhesion-stress and help those who suffer from Endometriosis.  You can view her page here.

For more fantastic tips on dealing with scanxiety, check out the blog by Tori Tomalia, a two-time cancer survivor.  She’s written a blog just for coping with scanxiety (click here) identifying her own personal tips and tricks that helped her.

Most importantly, remember that you are not alone.  Talk to your partners.  Talk to your EndoSisters.  Talk to your doctors.  Reach out for love and comfort and understanding.  This disease already makes us feel broken and alone.  Don’t let the anxiety leading up to appointments and examinations do the same.

Grace, this one’s for you. ❤

Yours,

Lisa

Resources:

CureToday.com

Memorial Sloan Kettering Cancer Center

~ 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

Truth, Theory, or Tall Tale?

Any gynecologist can surgically remove Endometriosis.

TallTaleEndometriosis is largely considered a gynecological disease.  So it makes sense that your gynecologist would be the one to suspect it, open you up, remove, and diagnose the disease.  Right?  Wrong.

Although some of us have been lucky enough to have gynecologists who are skilled Endo excision surgeons; many women are not.  Some physicians will never even suspect Endo, or claim it’s “all in your head,” denying any further diagnostic tests or studies.  Some gynecologists simply will not perform a laparoscopic surgery, claiming a continuous regimen of pain pills and injections will suffice to mask the pain.  Others will open you up to confirm the presence of the disease, only to sew you back up and refer you to a “qualified surgeon” for the removal of any Endo and/or adhesions.

Not all doctors are created equal.  And it’s unfortunate.  And not all women with Endo have it in the same spot.

Your gynecologist or excision surgeon may be able to remove Endo from your pelvic area and some of your torso; however, if Endo is found in other locations such as the lung, spine, or brain, you’ll be referred to a surgeon specializing in those areas of the body.  It is not purely a gynecological disease.

It is purely an insane mess.