All is well

Woman standing in towel showing stomach after laparoscopic surgery a week earlier; four incisions covered by bandages. Taken by Lisa Howard, July 2018
© Lisa Howard; 2018

Thank you to everyone for the outpouring of support from my emotional Friday. I’ve received so many virtual and in-person hugs. It’s awesome. You guys are awesome.

I wanted to let you know I’m doing well. I look forward to my meeting with my physician on April 22nd to go over the ultrasound results and have a heart-to-heart talk. And trying to remain positive.

What’s up with the above-photo? I recently developed a roll of black & white film that had been in my camera for the past several months. I couldn’t remember what was on it, but I do have one rule when it comes to my photography: one weird, creative, or special selfie must be taken. It’s often hit and miss as it’s an old camera (a Minolta XG-1 from 1982) as there’s no auto focus…haha, but it always makes for a fun project.

Yesterday I picked up my pictures from the developer here in San Diego. And the above photograph is the very first one in the pile. I had totally forgotten about taking it. Was clueless it was on there. And wasn’t prepared for the flood of emotions that boiled up to the surface. This was taken about a week after my July surgery.

I felt sad, then angry at this relentless disease, then sad again. Overwhelmingly so. But as I stared at the photo while safely tucked inside my Jeep parked in the parking garage in downtown San Diego trying not to cry, those negative feelings morphed into something else: a sense of pride, strength, and courage.

There I was, a week after my surgery: I felt well enough to shower alone. And set up the camera on the bathroom counter, tinker with settings, and cross my fingers hoping it would come out. Unashamed of the broken body that the camera would capture, I stood tall and strong.

And this photograph captured that moment.

My moment.

Our moment. I know that you, EndoWarriors, have stared into the mirror at your incisions, your bandages, your scars, your pain. Stand tall with me.

We can get through this.

All is well.

Regardless of the journey…We are alive, and we are in this together.

In a Moment of Weakness

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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.

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.

Share Your Story: JH

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JH was 21 years old when she received her diagnosis in 2004.  Now 34, she is living in Minnesota and is in a lot of pain after having three children.  After reading her story, do you have any words of advice for JH?  She would appreciate an email…

JH’s Journey:   I found out I had endometriosis that was considered moderate to severe after having my first child. I went through the Lupron treatments and a laparoscopy to find out that neither can really help. They can help and may for some, but the told me after all of the treatments and surgery that it may not last for any time at all. Since then I have had two more kids and stopped all treatments. My youngest is 5 and I’m considering surgery because I can barely tolerate the pain as it comes more and more frequently. My pain medicine does little to help, but at least I can control when I take it and get comfort for a few moments when I do. After I had my son the pain down my legs and into my back began and it’s very hard to walk some days. I feel helpless and have heard that the surgery MAY help, but there are no guarantees. My stomach even boats around my menstrual with the pain and that causes even more pain. I’m just at a point now where I’m willing to try something that may help to relieve the stress from my body.

If you wish to contact JH, you can email her here.

I want to send a special Thank You out to JH for being brave enough to share her journey and reach out for advice.  And am so grateful she was able to have three beautiful children!  I wish you luck in your endeavors to find relief…and a medical team who knows how best to approach your Endometriosis.  ❤ Yours, Lisa.

downloadAnd if YOU would like to share your story, you can do so by clicking here.  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.

My 2nd Endo Surgery : Recap & Comparison

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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…

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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.

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

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

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

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

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

Yours,

Lisa

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

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Cap’n Poopy Corn

 

A Quick Update from Surgery

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A quick pre-op snapshot

So, surgery took place on Wednesday, September 21, 2016.  It’s main intent was to take a look inside to see if my Endometriosis had returned, to excise any lesions and free any adhesions.  The official list of procedures to be possibly done that day, “Robotic Assisted Right and/or Left Ovarian Cystectomy, Excision of Endometriosis and Lysis of Adhesions, Possible Enterolysis, Urethrolysis, and Cystoscopy.”

The surgery took a little over two hours.  I did not get to meet with my surgeon afterward, unfortunately, but did have the pleasure of speaking with him on the telephone before I left the hospital that day.  What I remember:

Meg, the nurse, “Lisa, I have Dr. Kurtulus on the phone.  Do you have any questions?”

Me, “Did he find anything?”

Meg to phone, “She would like to know if you found anything. [pause] He would like to talk to you,” and she passes me the phone.

Dr. Kurtulus, “Hi Lisa!  How are you feeling?”

Me, “I’m okay.  Did you eat lunch?”

Dr. Kurtulus,”[laugh] Yes, I ate lunch.  [Pause] So you want to know if we found anything?”

Me, “Mm-hmm”

Dr.Kurtulus,”Well, your Endometriosis was far worse than your first surgery.  No wonder you were in so much pain.  I cut out what I could, freed up adhesions, and restored your anatomy.  You have Endo on your bowel now, too.  I took lots of pictures.  We’ll talk more on the Fourth.”

Me, “I’m so glad you found it!”

That’s all I remember.  And I am grateful for that post-op-haze-memory.  My post-op appointment will take place on October 4, 2016, at 2:00 p.m.  And I cannot wait.

I did “everything right.”  Six months of Lupron Depot.  A continuous birth control pill.  Altered my diet to “The Endo Diet.”  Treated my body better.  My MRI, CT scans, and ultrasounds were all normal prior to surgery.  Yet I continued to press the issue and sometimes all that is left is to take a peek under the hood.  And I am so grateful that Dr. Kurtulus listened and performed the surgery. It wasn’t all in my head.

If any of you read about my 2014 recovery, it was horrible.  This time around, it’s not so bad at all.  I plan to write more about that once recovery is over, after I talk to Dr. Kurtulus to find out if he did anything differently this time.

But for now?  I’m going to walk around the house, drink my water, pop a stool softener and hope today (Day Six) is the day I poop. My god…sending the man out to buy prune juice today. 😉

I hope you have all had a wonderful week.  For those of you who are fighting the pain, continue to endure.  And advocate for yourself.  You’re not crazy.  You’re not weak.  We suffer from an invisible illness, which may be invisible to all tests and scans, yet may be wreaking havoc in our bodies.  You know your body.  Listen to it and take action.

Thank you, all, for your support before and after my surgery.  I can only hope to be as supportive to you when you need me.  ❤ Lisa

 

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

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

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

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

I will repeat it:

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

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

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

2nd Surgery pending…

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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…