Another Surgery is on the Calendar!

2020 Calendar with May 13 circled

I had a wonderful visit with my surgeon, Dr. Mel Kurtulus, this past Tuesday. It was a follow-up appointment to discuss last week’s ultrasound results and my ongoing complaints of pain and, what I suspect, is a return Endometriosis.

Due to my documented location and severity of pain, another surgery (at my request), the doc is agreeable to performing a “peek under the hood” as we like to call lit. So, the date is May 13, 2020. Surgery Number Five since my 2014 diagnosis.

What’s gonna happen depends on what he sees once he’s inside, but here’s the plan:

  • Excision of any Endometriosis lesions;
  • Removal of any adhesions;
  • Removal of any ovarian cysts;
  • Removal of the left ovary (again, at my request as this has been my Endometrioma problem-child); and,
  • A routine check inside the bladder (Cystoscopy).

If, and ONLY if, it is warranted by either my insane tracking (and soon-to-be more in-depth journaling of my quality of life while suffering from any uterine cramps): the uterus and cervixes (that’s right; there’s two) may be removed. Due to the risks and complications such an addition to the above list of surgeries may pose, we’ve opted to wait until the surgery is either absolutely medically necessary by destroying my quality of life or go in and remove the uterus and cervixes at a later time. But again, he may deem the procedures medically necessary depending on what he sees once he’s inside me. Won’t know ’til the day of, but right now I’m bankin’ on I’ll have my uterus and cervixes for a while longer.

I accepted the risks and reasons we discussed in not performing the hysterectomy this May. And am super grateful he took the time to explain them all. Although, the discussion is not off the table yet; remember, if my journaling shows that it’s severely impacting my Q. of L., then it may sway the decision! Time will tell.

So, what goes on during these surgeries? I know that any EndoWarrior reading this blog knows. But what about those who haven’t gone through it? I feel like now would be an appropriate time to cover that.

I have only ever had robotic-assisted laparoscopic surgeries for my Endometriosis. So I can only attest to my experiences. Robots? Yes. Robots. Well, one big spidery-lookin’ robot called the DaVinci. Let me preface this with I AM NOT A DOCTOR…this is purely my understanding of what has happened during my surgeries. If you’re a medical professional reading this and want to correct anything, please let me know.

Doctor and assistant with da vinci robotic surgery equipment

Itty bitty tools are controlled by the surgeon who is sitting several feet away at a computer console with joysticks, for lack of a better word! These tiny tools can be precisely maneuvered and manipulated and the zoom-in capability of the camera is terrifying! But amazing!

Da Vinci surgical tools
Robotic general surgery: Current practice, evidence, and perspective – Scientific Figure on ResearchGate. Available on: https://www.researchgate.net/figure/Robotics-arms-of-the-da-Vinci-Xi-system-courtesy-of-Intuitive-Surgical-Inc_fig1_273504344

So, he sits at the console. The OR staff assist with ports and moving equipment, etc. And the anesthesiologist does his own thing; they all work together to make sure I’m well cared for and not dying on the table…

Davinci robotic system, table, console, tools, screen
https://www.nature.com/articles/ijos201724

Speaking of the table, I’ll be on it, tied down, covered in a drape, and put up in the not-so-typical gyno-stirrups position (aka Allen stirrups). The OR staff will likely add some tools like a uterine manipulator, a catheter, etc. Then the incisions will begin.

If history shall repeat itself (based off of 2014, 2016, July 2018, and Nov. 2018 op reports):

An small incision at the belly button allows for a small tube to be inserted into my abdomen and CO2 gas pumped in (I’ve had as much as 3 liters of gas for my surgeries). Inflate the belly! “Why?” you ask? So the gas distends the belly, shifting the organs around, and giving the surgeon a better visual of EVERYTHING going on inside. And then when the table is tipped slightly at an angle, most of the free organs shift a wee bit more, allowing greater access to the pelvic cavity.

A clear balloon filled with helium and feathers

Once proper balloony-big-belly has been achieved, a device called a trocar is placed into the incision of my belly button. Think of a trocar as a hollow tube where the camera and surgery tools can be slipped in without screwing with my incisions. More incisions to the right and left of my abdomen will be made, the number depends on what’s needed during surgery. I’ve had two, three, four, and five in the past. More trocars are placed in each incision.

A camera is inserted usually through the belly button trocar, an inspection is made and, (in my case) the Endometriosis and adhesions are visualized. I’m then tipped backwards and somewhat upside down; a position known as the Trendelenburg position. Again, this allows greater access to the pelvic cavity and the surgeon works his magic.

Is it quick? Nope. Sometimes it’s a 2-hour surgery; sometimes it’s a 4.5-hour surgery. And for others? It can be much longer…It all depends on the sheer number of lesions, the presence of adhesions, and a myriad of other factors including if there’s any organs involved, etc.

Endometriosis lesions can take a variety of shapes and colors. They may look like little freckles, or large blisters, or just stains inside the body. And the colors can range from clear, to pink, to red, to brown, to blue, to black and anything in between. It’s not an easy task, and again takes an experienced, skilled surgeon to recognize and remove the lesions.

graphic that reads excision of endometriosis is the gold standard

Now that they’ve spotted the Endometriosis, they go about handling it. Excision is considered the best way to remove the lesions: cutting them out. Not all surgeons practice excision. Others may just burn the lesion, which may lead to leaving the root of the lesion beneath the surface of the pelvic tissue or organs. Scarring is also more likely to occur. Excision is when they cut out the lesion in its entirety, and remove a margin of healthy tissue around it. Is it a guarantee the illness won’t come back? No. Unfortunately. Even the best-trained experts have cases of recurrence with their patients. And, if you’re reading your op report(s) and see that a heat tool or laser was used during your surgery, please don’t automatically assume it was ablation. Call your surgeon and ask. Some heat tools can be used during excision as a way to cauterize the area.

graphic depicting difference between ablation and excision (burning versus cutting)
Detail,”The Endo-Graphic” by Sarah Soward.

Once the surgeon has completed their task, it’s time to close you up. Equipment and materials are removed, counted, recounted, and recounted. Trocars are removed. The gas is expelled as best they can. Now this part is interesting. Trapped gas can be insanely painful during surgery recovery. It’s not like you can just fart or burp it out. The CO2 gas either 1) causes immense pain because the gas is hanging out inside the pelvic cavity (not inside the stomach or intestines like normal “gas”) or 2) the CO2 gas has damaged some nerves along the way. There’s back-and-forth debate about what causes that insane shoulder pain after a laparoscopy. But my surgeon has employed a new trick and has named it the “Lisa Special” after I asked him what he did that was so different after my second surgery. All of my girls who go to him request it. And all of them have marveled at the difference compared to other surgeries they’ve had.

The Lisa Special: Before that last incision is closed, he has the anesthesiologist inflate and deflate the lungs a few extra times…like deep breaths…and it helps push out a lot of the remaining gas that’s hiding along the nooks and crannies of the pelvic cavity. He told me once that he even heard the gas escaping from the incision. I hope it sounded much like a farting balloon.

And then? The incisions are closed and the recovery process begins. Endo excision is not an easy ordeal. It’s not simple. It’s not easy. And the recovery and healing take a lot of time. And it can be painful.

For me, my minimal recovery time off of work is two weeks. Sometimes I wish I had three weeks. But the restrictions aren’t lifted for a few more weeks after that. No bending, no squatting, no pushing, no pulling. I can’t lift anything heavier than a half-gallon of milk. No driving for the first two weeks. It’s intense. And let’s not even discuss the pain of the recovery itself, or the shoulder pain if there’s any CO2 gas left, or the agony of not being able to get comfortable to sleep, or the need to get up and take tiny walks around the house every few hours.

And the hardest part? Watching friends and family go through it with you. The fear, anxiety, nervousness, pain, and heartache. But we’re all in this together. And I’m super grateful to those who help me during my recovery time. Fewer things are more degrading than not being able to get out of bed, sit on the toilet, or even walk around the house without someone there to help.

I’m ready for this surgery. And I’m not. I find myself dwelling on “I can’t believe I’m having another one…” and “What if he doesn’t find anything?” And those thoughts put in my a quiet, introspective, sad mood.

My husband reminded me last night that I say “What if he doesn’t find anything” before every surgery. And every time, he does find more Endometriosis and scar tissue. So I need to remind myself that I know my body, I recognize this pain, and something is wrong.

Even if he doesn’t find Endometriosis, he’ll find something.

I hope.

I’m using up all of my vacation and sick days for my recovery. So he’d better find something

PS – A few of my EndoWarriors and I have decided to name my left ovary since it’s coming out: “Ophelia”…aka “I feel ya”. Another EndoWarrior (you know who you are, Stalker) I know has suggested a bon voyage party for Ophelia. We’ll see how I feel closer to May…but I’m amenable to the idea. Now? To revisit the “Tips and Tricks” before and after surgery and buy a new muumuu!

**

~ 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

Feel Good Fridays

Person walking on a downed tree through a forest

Hello my lovely readers! I hope you’re all doing well.

Today’s Feel Good Fridays is a selfish one: I found it for me. And I want to share it with you. May it strike a chord with you as it did me.

“She is of the strangest beauty and the darkest courage, and when she walks with intent the earth trembles beneath her feet.”
― Nicole Lyons, Hush

I had another ultrasound yesterday because of my pelvic pain and I’ve mixed emotions. I plan on blogging about what I’m going through after my doctor’s appointment that I have next Tuesday. In the meantime: have courage. In all things. I know that there is something amiss inside my body; the pain tells me as much. I’ve had five pelvic ultrasounds in the last 11 months. We’ve been monitoring cysts on both ovaries. My pain has been off-and-on during the last six of those months and getting progressively worse. In my October ultrasound, the cysts were found to be shrinking, which I thought odd because my pain was doing the opposite.

Yesterday’s ultrasound yielded results that supported my suspicions: something is definitely going on. And Tuesday I will talk with my doctor and surgeon, Dr. Mel Kurtulus, to discuss the report and a plan. And then I’ll update you!

Although I want to curl into a ball on the floor and cry, I won’t. Not yet. I need to mentally steel myself for Surgery No. 5 in six years. Even if it finds nothing amiss: I need to go in and make sure. And I need to be ready to watch my husband, mother, and best friends go through the anguish of another surgery with me. I know it’s hard on them, too.

I don’t despise the disease. It has brought me closer to each of you, introduced me to some incredibly strong people, and given me something to fight for. But moments like these are incredibly difficult.

So, stand tall, embrace that inward beauty you possess, and walk with intent. You’ve got this.

I’ve got this.

Sponsor Highlight: Natural Harmony Reproductive Health

Logo for Natural Harmony Reproductive Health

As you may know, we are hosting (along with the non-profit organization, Gifts 2 Help) our 2020 Endometriosis Awareness & Support Walk. This is the first year we’ve asked for sponsorships and today I’d like to honor Natural Harmony Reproductive Health.

Natural Harmony Reproductive Health is an integrative clinic dedicated to providing compassionate, integrative, expert reproductive healthcare. 

An endo warrior herself, Dr. Merritt Jones specializes in the integrative treatment of endometriosis, recognizing that while no two people’s stories are exactly alike, many endo warriors have faced a long and arduous road and have had to fight to be seen, heard, and properly cared for. She believes that people living with endo deserve better. 

Natural Harmony takes an integrative and multidisciplinary approach to the treatment of endo, offering functional medicine evaluation, acupuncture, nutrition therapy, herbal and supplemental therapy, lab testing and lifestyle support and more. The clinic will also happily work alongside patient’s other providers to provide truly integrative and collaborative care.

Not only is Dr. Merritt my as-needed acupuncturist, but she’s a wonderful friend and an incredible support to myself and others in the Endo Community. Her compassion, understanding, and drive to help others is endless.

Feel Good Fridays

black and silver pen on white paper

Good morning, Readers! And happy Friday!

We’re well on our way through February, already, and I hope that it is treating you well.

Today’s quote is to remind you; yes, you, that YOU can handle it. Whatever it is, I know you can. Need help? Ask for it. Afraid you can’t? You can.

“Knowledge is power: You hear it all the time but knowledge is not power. It’s only potential power. It only becomes power when we apply it and use it.

Somebody who reads a book and doesn’t apply it, they’re at no advantage over someone who’s illiterate.

None of it works unless YOU work. We have to do our part. If knowing is half the battle, action is the second half of the battle.”

― Jim Kwik

Specifically, this goes out to those battling to achieve the healthcare you need. Is your physician telling you your pain is all in your head? That you should try *this* treatment or *that*? Or that the treatment your requesting is subpar?

You know your body. You know your symptoms. You’ve done your research on your health and disease. Present that information to your physician an talk about it. Bring print-outs of studies that support your position. Don’t want to take a medication due to side-effects? Bring a print-out of the FDA’s Drug Database Adverse Side Effects search. Can’t enunciate where your pain is in your body? Keep track of it on a pain journal and print that out.

Arm yourself with tangible, hands-on evidence that you can bring with you. And if they still won’t help you? Look elsewhere.

Nearly every day I get emails from women (or their families) seeking proper care and how to fight for what they need.

Educate yourself, but more importantly, ADVOCATE for yourself. Push for the care you need. It’s out there. ❤

Have a wonderful weekend. And if you ever need to talk, I’m right here.

Love, Lisa

PS – to those who helped me recently push for what I needed as well, thank you.

The “Band-Aid Treatment Plan” Strikes Again

Bandaids crossing into an X

If you’ve followed my blog for a while, you may have already seen the entry about c-section scars developing lumps of Endometriosis. If you haven’t already read it, you can follow the link or just know there are a lot of women that develop a painful mass in or around their c-section scar that turns out to be Endometriosis. It’s not just limited to c-section scars, but those are mostly the reported instances of scar Endo. Most of the time, that lump is removed and the symptoms fade; recurrence seems rare.

An article hit my inbox this week that had me breathing heavy. I had to take a few days to calm down before I wrote today’s entry.

Continue reading

Pain Journal: January 2020

The first month of 2020 is already over! And I just realized I didn’t share my December pain journal! Whoops!!

So, January. I was lucky enough to start the first day of the new year with my period (I skipped having a period in December). AND then I had it again on January 25th. So, two for one! Yay!

My favorite part? No more discomfort near my belly button and staples! I don’t know if I’ve just gotten better about portion control and eating, or what, but I’m super excited about the lack of spread-out pain and discomfort that occurred in January.

The not so favorable news? Both on and off my period, I experienced pain on the lower left and lower right of my abdomen. Ovary pain? Cyst pain? Something-else pain? It was in the exact same spot both on and off my period. And when on the left, it was almost always accompanied with reciprocal lower back pain in the same location. But the good news? Naproxen made the pain manageable and no need for the newly-acquired Tramadol.

During my periods, I had some uterine cramping and the aforementioned left and ride-sided pain. The highest-intensity pain level was a about an 8 out of 10. I hate it when it’s above a 6…but again, Naproxen dropped those pain levels below a 6 and I avoided Tramadol.

On January 6, 2020, I had two crowns repairs, which meant temporary crowns for 2.5 weeks. During that time, I mostly drank dairy-based protein shakes. Dairy. Ugh. This experience confirmed that I need to stay away!!! Wait ’til you see my poo journal below!

And on January 24th, I received some very stress-inducing news. Upon hanging up the phone, I immediately had a pain flare that lasted several hours on my lower left side. It truly makes me believe there’s either Endo or a cyst or soooommething wrong on that side. And it further encourages me to schedule another surgery when I see my doctor tomorrow.

I’ve also started counting my calories, trying to eat healthier, and have begun a low-impact exercise routine (started the Walk On 21 Day program on 2/1/20). We’ll see how that affects my symptoms. If you’ve been following my journals, hopefully you notice a difference in the types of foods I’m eating and the amount of alcohol I’m consuming!

Ooooooh man. Januarys’ poo-catastrophe!!!! Are you ready? OMG.

See all that red? DIARRHEA! SO MUCH DIARRHEA! Between the beloved phenomenon known as PeriodShits, the dairy-induced liquid carnage, and catching some type of stomach bug, I feel like I had way more diarrhea than I had regular poos. But January is behind us. And I will soon forget the multiple trips to the bathroom and the steady stream of OMG. Whew.

Let’s see what February holds in store!

Do you track your pain, symptoms, and diet? If so, what platform do you use? Share in the comments below!

Feel Good Fridays

Photo of people riding a roller coaster, circa 1961
“Giant Roller Coaster” (1961) courtesy of Vancouver Public Library

January ends today! We’re already one full month into 2020. Where did the time go? How was your first month of this new year? Ups? Downs? Struggles? Victories?

Today’s quote is exactly that: full of ups and downs and a bit of encouragement.

“My life is a roller coaster on golden wheels; IT IS NEVER GOING TO BE PERFECT but I am glad for the perfect moments”
― Daniel Derrick Mwesigye

May your weekend be wonderful. And if it isn’t, and you need someone to talk to, reach out to me. I’m here for you. ❤ And may you find those moments of peace and perfection in your life.

Love, Lisa

PS: I’m in LOVE with today’s photo. The man in the front row compared to the woman in the 4th row speaks volumes. ❤ Ups and downs, indeed!

Blogs I updated this week:

Bladder & Endometriosis – added an Oct. 2019 study of a woman who complained of painful, burning pee. All of her lab tests were normal. An ultrasound and MRI found a mass inside her bladder. Upon removal, it was confirmed as bladder endometrioma.

Endometriosis & The Appendix – added a Nov. 2019 study of a 33-year-old woman who had right-sided pain, nausea, vomiting, and loose stools. Another case of Endometriosis on the appendix!

Inguinal Hernial & Endometriosis – added a Nov. 2019 study of a woman with a suspected inguinal hernia, femoral hernia, or enlarged lymph node. Of course, it was Endometriosis. A second November 2019 study followed a 47-year-old runner with a lump on the right side of her mons pubis that had been painful for six months. I also added a Dec. 2019 study of a 41-year-old woman who complained of a mass near her right inguinal region. Was it a tumor? A recurrent hernia from four years prior? Nope. It was a mass of Endometriosis.

Another case of skin Endometriosis – In her cleavage!

A close-up of cleavage beneath a tank top
“Cleavage” by Earls37a

Wait? What?!

You read that right. Another instance of cutaneous Endometriosis: this time between a woman’s breasts! Yeah yeah, I know cutaneous Endo is SUPER DUPER rare…but it does happen…

On December 17, 2019, the Journal of Endometriosis and Pelvic Pain Disorders published an abstract online. The physicians, surgery center, and laboratory are all located in Iran, so I’m assuming the patient is also located in Iran. I don’t have access to the full literature, but the here’s my brief synopsis on the abstract.

A 24-year-old woman complained of a lesion between her breasts that would occasionally discharge fluid. She underwent various diagnostic tests and eventually the lesion was excised and biopsied. The abstract leads one to believe it was diagnosed as Endometriosis.

Again, I cannot stress enough: if you have a weird lump, bump, mass, or lesion where it shouldn’t be: go to your doc and get it checked out. If you haven’t already read my blog on Endometriosis and the skin, please go give it a read for several other examples. Thanks and have a great day!

Resources:

Journal of Endometriosis and Pelvic Pain Disorders (Dec. 2019, Abstract) – Skin Endometriosis Between the Breasts of a Young Girl: A Case Study and Literature Review

~ 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