My 4th Endo Excision Surgery

"Uterus & Guts," created by Ivy Denton
@deathwindchimes ÔĽŅ

Before I get started, let me explain the image above. A talented artist by the name of Ivy Denton (@deathwindchimes) created it for me (she also created the EndoGuy and PoopChuteSnakie you’ll see below). She’s taking commissions if you’re interested in throwing ideas her way! “What is it,” you may be asking yourself. It’s a whimsical interpretation of my insides: a uterus with two cervix, no fallopian tubes (hence the band-aids and floating ovaries), and it’s accompanied by it’s new buddy: an intestine missing some pieces. I think it’s adorable! Thanks, Ivy!!


On with the good stuff! If you didn’t already know, back in July of this year Dr. Kurtulus discovered a pair of Endo lesions on my small intestine. He brought in a colo-rectal surgeon, Dr. Schultzel, to look at it and decide if we could remove it then. Unfortunately, it was deemed too deep and risky without a proper bowel prep and a future resection would take place.

On November 26, 2018, I had a tag-team surgery for my Endometriosis. Dr. Mel Kurtulus once again performed my excision surgery and Dr. Matthew Schultzel performed my bowel resection. This took place just four months after my last excision surgery. The procedure lasted about four hours and went without a hitch. I remained in the luxury resort…I mean the Prebys Cardiovascular Institute at Scripps Memorial Hospital for three nights/four days while I recovered.


The Bowel Prep

This was my very first bowel prep. Ever. And I was terrified of so many things. I’d heard horror stories about the taste of the prep, and equally horrifying tales of the aftermath.

I was prescribed Suprep, which of course my insurance refused to cover. If that ever happens to you, get a manufacturer’s coupon off of their website and bring it to your pharmacist. It certainly knocked a bit off the price for me!

Honestly, it didn’t taste that awful…kind of like a salty grape-flavored 7-up. But ugh it was still rough to get down.

35 minutes after I downed my first big dose of Suprep…and the torrential downpour had begun. Over the next 2 hours, I pooped a total of 19 times (I’m sparing you the details, but kept a detailed log; no pun intended). Most of it was liquid and sometimes I couldn’t even leave the toilet in between craziness.

My colo-rectal surgeon also had me on a regimen of ClearFast, to help not only keep me hydrated during the process but to make for a faster/easier recovery after surgery.

Then at 10pm, I took my 2nd dose of Suprep. It took about 30 minutes to take effect and over the next hour I poo’d liquid 13 times. At 11:30, I dragged myself to bed. At 4:00am, I woke up to take my prescribed ClearFast and learned that Suprep was still in command. I pooped again 5 times over the next hour. And when we got to the hospital, I poo’d liquid again twice before surgery (once in my surgery cap ‘n gown)! I was scared that the clear liquid-pooing would keep them from performing my surgery since I was obviously still voiding. Nope! The show must go on!

The Bowel Resection

After a few months of working with my insurance and getting Dr. Schultzel specially-approved for my surgery (even before he was in my insurance network), the day was here! I endured the prep and I was ready!

My Mum came with me to the hospital and my husband had to work, we met the smiling faces of hospital staff who have remembered us from previous surgeries, AND I had my favorite nurse help me during pre-op setup. Fist bumps, hugs, and cheek-kisses were exchanged all around the pre-op area as they wheeled me out of the room. Have I mentioned how much I love this hospital? They’re like family!

I digress: back to the surgery!

Previously, the endo was spotted on my terminal ileum, which is the area where the small intestine meets your large intestine ( X marks the spot on the picture below). At my request, my colo-rectal surgeon was also going to remove my appendix due to the close-proximity of Endo and the chance that it, too, may be affected. He was also going to inspect and possibly remove any portion of my large intestine that may also be Endo-laden (see the red square below). He ended up doing JUST that.

There were a total of five incisions (1 on my right side, 3 on the left, and a larger one at my bellybutton). I was given a TAP block injection while I was under anesthesia to help with my post-op pain. And in went the camera…

Dr. Schultzel spotted the Endo lesion on my terminal ileum right away, then saw more lesions on my cecum (kind of the bottom right portion of the large intestine) and near my appendix. He also saw a lot of pelvic Endometriosis, but knew Dr. Kurtulus would be handling those nasty buggers.

This is where things get exciting! When I learned I’d have my guts stapled together, I envisioned a big ol’ heavy-duty office stapler. BUT a surgical stapler, especially a robotic stapler, is waaaay cooler! It sort of cuts and seals at the same time with a row of tiny little staples. If you’re familiar with sewing, imagine a serger machine. Zip & slice! One neat little package. I have no way of knowing how many staples still reside in my guts, but I imagine a lot of little teeny ones!

If you don’t want to imagine, you don’t have to: here’s a Youtube video (not mine) of another surgeon using a robotic stapler during a surgery (fast forward to the 0:44-second mark) https://www.youtube.com/watch?v=wSxiTZwdUFA

So, Dr. Schultzel removed my appendix, my cecum, a portion of my large intestine, my terminal ileum, and small intestine. All in all, it was a little over 7 inches (18 cm) of my guts. The stapler system was used in all areas where my guts were removed.

My small intestine was reconnected to my newly-constructed large intestine and that connection now lives over my liver, near the right of my bellybutton. Then he wrapped that little newly-formed gut-intersection in a flap of my omentum (a fancy term for a fatty, fleshy organ that sits near the stomach and is kind of like a draped apron) – imagine a little poopchute burrito or taco near my bellybutton. ūüôā

Dr. Shultzel then passed the controls of the Da Vinci over to Dr. Kurtulus (see The Endo Excision below). Once Dr. K finished removing any Endo and adhesions, Dr. Schultzel continued to work his magic. He pulled out all of the cut-out bits through a hollow tube placed in my bellybutton incision (called an Alexis wound retractor), stitched, and glued me up.

Alexis Wound Retractor; photo courtesy of Applied Medical

My incisions are definitely larger than surgeries-past, but so much more was done. After reading about the Alexis Wound Retractor, now I understand why my bellybutton incision is roughly 2 inches long!


The Endo Excision

Awww, Endometriosis. It loves me so much it keeps coming back to visit. With it being just four months since my July wide-margin excision surgery, we weren’t expecting to find much, if any. Dr. Kurtulus was there to inspect under the hood just to be safe while I was already under the knife for my bowel resection. A wonderfully, perfect coordinated effort. Boy, were we in for a surprise.

He found newly-formed adhesions on my left side, which involved my left ovary and abdominal wall, more along my peritoneum lining, as well as new adhesions that had begun to smash my bladder back down. He also found Endometriosis lesions “all throughout the pelvis.” They had grown back on my right ovary, my right ovarian fossa (where the ovary hangs out), my Pouch of Douglas, the uterosacral ligaments, near my bladder, my left ovary, and the left adnexa. And, as is customary, an Endometrioma (the chocolate cyst) had formed again on my left ovary. Always my left ovary!!! Even after just four months…*sigh* But…”the rest of the pelvis and abdomen looked clear of endometriosis lesions.” Yay!

He removed all of my Endometriosis lesions with wide-margin excision. He also removed the Endometrioma (he saved my left ovary) and he cut away all of the adhesions that had formed. He also, as is our custom, performed a cystoscopy to look inside my bladder for any Endo or abnormalities: pink, healthy, and all normal! And for the first time in a few surgeries: no Endo on or around my ureters!

Everything that was removed: the gut-bits, the Endo lesions, the adhesions, and Endometrioma were all sent off to pathology. This was the longest pathology report I’ve ever received: a total of seven pages! And it confirmed the presence of microscopic Endometriosis on my appendix. I’m SO grateful the surgeons and insurance all agreed to preventatively remove it.


The Recovery

My Mum, husband, and friends who saw me after surgery said it appeared to be my easiest one yet, in terms of how I felt during recovery. I, on the other hand, felt it was my hardest.

Four days in the hospital: my Mum stayed with me every day while I was there (I love you, Mum!!), my husband would visit after work, both of my surgeons visited as often as the could, and the nursing staff were freakin’ amazing!

During my stay, I was given a cocktail of Tylenol, Gadapentin, and Celebrex to manage my pain. I was offered Tramadol (100mg), but didn’t want it since I already don’t like taking my 50mg Trammy at home. But the cocktail did well and pain was minimal. If memory serves me correctly, I threw up a few times the evening of my surgery (likely related to anesthesia) and became intimately familiar with the hospital-issued throw-up bags.

My surgeon and hospital staff encouraged me to get up and walk the halls as often as I could muster. Not only would this help keep me limber and young (Ha!), but it would help get my bowels workin’ and tootin’. Those long walks around the 5th Floor wing were fun: I stumbled across my surgeon on one of those walks, as well as my best friend, Rosie, and my husband escorted me down the halls a time or two!

I remained on a liquid diet until I farted…late the evening on my third day. Very long days of nothing but soup and jello. But that fart? Which was AWESOME because not only was my Mum’s face epic and unforgettable when I tooted, but all of the nurses were just as excited as we were, AND I was served a small meal of soft foods (diced chicken breast never tasted SO good!). Mum and I even had a laugh keepin’ track.

The next late-morning, I was able to poop (if you can call it that…I’ll spare you the details, but I hope my Mum is laughing when she reads this) and Iwas merrily discharged on Thursday, November 29, 2018.

There were bouts of the dreaded shoulder-gas pain, both at the hospital and at home. A few of them were scream-inducing memorable. And those are the worst moments I remember. Sneezes, coughs, and vomiting were equally unpleasant. As well as trying to get, and remain, comfortable for sleeping. When I got home, I mostly remained on my Tylenol pain management, with the exception of 1 Naproxen Sodium and Two Tramadol through the duration of 2018.

I was off of work for six weeks. And got a little better every day. I kept a running tally of milestones:

  • 11/28/18: Released from hospital and finally at home
  • 12/4/18: I can raise my arms above my head without feeling like I”m pulling my guts out of my incisions
  • 12/8/18: First sneeze since surgery: one sneeze, two sneezes, three sneezes!! SOOO PAINFUL!
  • 12/14/18: I can blow my nose without my guts hurting!
  • 12/17/18: I still can’t bend down and wash my feet, and it’s been 3 weeks since surgery…so I got a pedicure at a local salon. There was some disgusting dead skin!
  • 12/19/18: If I use the handrails, I can walk up the stairs like a normal! Slowly, but normal!
  • 12/20/18: I walked the entire mobile home park! It took over half an hour, but I did it!
  • 12/27/18: I drove!!!
  • 12/29/18: I lasted 10 days without needing to take a pain pill!
  • 1/3/19: I laid down on my side for just a few minutes! Soon: no more back-sleeping!
  • 1/7/19: I’m back to work!!!
  • 1/9/19: I can lay down on my stomach! Albeit for just a few minutes. But still!!
  • 1/17/19: as a fun note: bending or squatting or sitting for long periods still becomes very uncomfortable. So…I haven’t shaved my legs since before 11/26! Bwuahaha.

I cannot tell you how much better I feel since before my surgery. I haven’t had any of my pre-surgery pain. Not one! My bowel movements are (99.9% of the time) pain-free. The constant pain on the right and left sides of my lower abdomen are GONE. My December period was light and cramp-controlled with Ibuprofen. My back pain is gone. And I poop ALL the time.

And…I’m a pooping machine! I compared the first week of November poops to my January poops, both the frequency and the pain levels. My jaw hit the floor:

I now eat six small meals a day, instead of three large ones, to accommodate my new bowels. I also have severely restricted my alcohol intake. Where before I could enjoy 2 or 3 beers in a sitting, I can now only have one. Same goes for wine or cocktails. More than that and I’ve noticed I’m severely dehydrated and my gut’s not happy for days. So, I’ve become the ultimate cheap date: appetizer menu and one drink. And it’s been a marvelous trade-off.

I’m super grateful to my Mum for being with me for a week while I recovered. There’s just something so special about the healing energy of a Mum. And to my friends who came to take care of me after Mum left: thank you. ‚̧


The Bills!

Nobody’s favorite part…the money!! This has been my most costly surgery to date; not only because of the two surgeons involved, but the hospital stay after surgery! And my bills are still rolling in:

$224,476.41Hospital Facility Bill Insurance Payment Pending
$1,687Gyno Surgeon Bill Insurance paid in full
$2,082.19Pathologist Bill Insurance Payment Pending
(Pending)Colo-rectal Surgeon Bill
Insurance Payment Pending
$3,000My co-pay(I’m still waiting for my bill)
$231,245.60Total(updated 1/17/19)

Surgery Photos

Before I share all of the surgery and recovery photos, I wanted to share the photo I found the most amazing.

Back in July, Dr. K took a photo of my bowel with the 2 pink & red Endo lesions. In November, those same splotches had turned BLACK. In a matter of four months, the disease altered that much. I know that lesions come in a broad range of colors…but I didn’t realize they changed color or shape once they were formed! Nor so quickly! So, we’ll start with that! Be flabbergasted with me ūüôā

But here are the rest of my surgery photos I received at my post-op appointments (click on them to enlarge):


Recovery Photos

Mum took a lot of photos while we were in the hospital (but funnily enough…none of her!). Here’s the Hospital Shenanigans:

And here’s a slideshow of my incisions from Day One to Week Seven!

If you’ve made it ALL the way to the end of today’s blog entry, you have my applause!

I’m eternally grateful to both my skilled surgeons and their staff; the insurance crew who expedited the approvals through the system; my Mum, my husband, my Seester, and my friends for not only helping me, but putting up with my grumpy-recovery BS; as well as my employers and my co-workers for allowing me to do this second surgery this year. 2018 was one hell of a ride. And this surgery could not have gone any better without each of you.

Let’s hope there’s no need for future surgeries!


Endometriosis & the Pancreas

I’m sitting here going through my very old post-surgery emails and I’ve stumbled upon one from December that made my jaw, once again, drop. A study was published in late 2018 about a woman who was discovered to have an endometrial cyst inside her pancreas…WHAT? It’s super-duper rare.

As usual, this isn’t meant to scare you. Just inform you…

As you know…I’m prone to following studies down rabbit holes and satisfy my curiosity. Today is no different! Read on, dear Reader…read on!

What & Where is the Pancreas?

I’ve often heard of the pancreas but never looked into where it was and what it does. I know it’s somewhere in my torso…but never bothered or cared to know more. But now? I’m all over it!

It’s a gland about six inches long that’s smashed in the abdominal cavity, surrounded by the liver, spleen, small intestine, stomach, and gallbladder. The pancreas aids in digestion by secreting lovely secretions affectionately called pancreatic juices. It also helps regulate blood sugar via pancreatic hormones: insulin and glucagon.

Symptoms of Pancreatic Endometriosis

From what I’ve been able to read, it appears that symptoms may include:

  • Epigastric pain (pain or discomfort below your ribs);
  • Left upper quadrant pain (the section of your torso on your left : belly button to boob and everything in between); and,
  • Unexplained weight loss.

Diagnosis & Treatment

The good news is it appears that tissue growth and/or cysts are oftentimes spotted with CT scans, MRIs, or endoscopic ultrasound. These may lead physicians to exploratory surgery. And it seems that resection (removal) of the diseased portion of the pancreas is the best option for treating pancreatic Endometriosis.

If you suffer from symptoms and want to begin steps to ensure you DON’T have pancreatic endometriosis, I do believe you’ve got quite the journey ahead. Document your symptoms, track your diet and any triggers, and begin by pursuing imaging studies (xray, CT, MRI, ultrasound, and endoscopic ultrasounds). Talk to your doctor. Do understand that it’s very rare, but there are documented cases below:

Science!

Okay, on with the studies, including the one that brought me here!

A study from 1984 was of a 36-year-old woman who had complained of epigastric pain and was being seen at a hospital in New York. Fourteen months earlier, she was hospitalized with acute pancreatitis and sonogram studies were normal. Now back in the NY hospital, she had no prior history of surgeries, no abnormal periods, her pain was not during her periods, and she didn’t have a problem with alcohol. She had right upper quadrant fullness and lower left quadrant discomfort. Palpitation of her torso was normal, as well as a rectum exam and blood tests. An x-ray showed a hiatal hernia and a distorted duodenal bulb (a portion of the small intestine that is up by the stomach). And a sonogram revealed a small buidup of calculi in her gallbladder as well as an cyst inside her pancreas. A laparatomy was performed; they couldn’t feel any stones in her gallbladder, but located the 4cm cyst in the tail of her pancreas. Piercing of the cyst showed a yellow-ish fluid. They removed part of her pancreas, as well as her gallbladder and spleen. Biopsy of the cyst proved it was lined with endometrial tissue, and hence her diagnosis of pancreatic endometriosis AND no evidence of any prior pancreatitis was found…Her symptoms subsided after her surgery. Go figure.

In 1986, a study was published of a 40-year-old woman who had recurrent left flank pain for a year and a half. When palpitated, doctors could feel a mass near her kidney, but all other physical examinations were normal. An angiography showed the upper part of her left kidney was compressed. A procedure known as an excretory urography was performed and the left side was shown to secrete less, due to a mass which had displaced her left ureter. An ultrasound led doctors to believe a cyst was present. When punctured, the cyst oozed a chocolate-colored, thick fluid. Exploratory surgery was performed and the 8cm cyst was visualized compressing the kidney. While there, her surgeons also found a cyst on her pancreas. Pathology showed the cysts were Endometriosis.

In 2000, a 47-year-old Japanese woman had complained of epigastric pain, back pain, nausea, and vomiting. A CT scan and ultrasound found a cyst on her pancreas. A surgery was performed to remove the diseased portion of her pancreas and pathology confirmed it as an endometrial cyst.

In 2002, a 21-year-old Korean woman went to the hospital because of ongoing epigastric pain and she had lost 20 pounds in one year. She had no prior surgical history, her periods were normal, and her family history was normal. A physical exam and blood tests were also normal. A CT scan showed a 4cm cyst on her pancreas. She underwent a pancreatectomy to remove the infected portion of her pancreas and the biopsy showed it positive as Endometriosis. The rest of her pancreas was normal.

A study published in 2004 was of a 34-year-old woman who was admitted to the hospital due to severe abdominal pain. She had intermittent left upper quadrant pain for the past three years. Between those painful flares, she was pain-free. A CT scan showed an 8cm mass in the tail of her pancreas and a chest x-ray showed a nodule in her right lower lung lobe near her diaphragm. She underwent a CT-guided biopsy to take a sample of the cyst on her pancreas with fine needle aspiration and they collected 100ml of dark brown fluid from the cyst. A few imaging scans later, and doctors decided to do exploratory surgery. “Small plaque-like lesions” were found on her liver and diaphragm. Other lesions were found on her spleen and they found the cyst on her pancreas. A portion of her pancreas and spleen were moved, as well as the suspicious lesions. Biopsy confirmed the cyst in the pancreas was Endometriosis. The authors of the study stress that, although rare, “a cystic lesion in the pancreas must have endometriosis in the differential diagnosis.” At least consider the option…

In 2011, a 35-year-old woman had recurrent, severe pain in her upper left abdominal quadrant. The pain had persisted for three months and an examination revealed a cyst inside her pancreas. A portion of her pancreas was removed and a biopsy showed it to be an endometrial cyst.

A July 2012 study was of a 42-year-old woman who was hospitalized due to epigastric pain. A CT scan revealed tissue changes around her pancreas as well as possible cancerous growths. Her pain resolved, but later at a follow-up exam, another CT found additional tumor growth. Physical examination and bloodwork was normal. She was referred to a local university hospital’s pancreatic team. More CT scans found swelling and tissue changes around the tail of her pancreas. Pancreatitis was suspected. An MRI led the team to suspect Endometriosis. They learned that she had a history of irregular periods (but they weren’t painful), and that her sister had Endometriosis. Since the imaging studies were not conclusive, exploratory surgery was performed by a team of gynecological and gastrointestinal surgeons. Evidece of old Endometriosis activity was noted in her Pouch of Douglas, she had a chocolate cyst on her left ovary (they removed her left ovary), and cystic tissue was found on the pancreas; which came back from pathology as Endometriosis.

In 2016, a study was published of a post-menopausal, 72-year-old woman was preliminary diagnosed with pancreatic cancer and was referred out for further testing. She had increasing abdominal pain in the upper left quadrant of her torso. And her medical history included an umbilical hernia, an appendectomy, hypertension, her gallbladder was removed, a hysterectomy, and a surgical hernia repair. “There was no known history of pancreatitis or endometriosis.” Her abdomen was bloated and tender, especially in the area of her pain. Imaging studies showed a mass on her pancreas. Pathology came back as Endometriosis, and she was symptom-free five years after her surgery.

A February 2017 study is of a 43-year-old woman who had previously been admitted to the hospital for one day of severe epigastric pain and was diagnosed with acute pancreatitis. A CT scan and an endoscopic ultrasound at that time indicated a cyst on the tail-end of her pancreas. It was pierced with fine needle aspiration and brown fluid was retrieved. Fast forward to three months later and she’s at a medical clinic due to worsening abdominal pain, fatigue, diarrhea, anorexia, and having lost 15 pounds in the past three months. Although she had a previous diagnosis of Endometriosis, she did not have painful periods. Additional imaging studies confirmed the presence of the cyst and surgery found the 16cm cyst inside the tail-end of her pancreas. That section, as well as a portion of her spleen, were removed. No other evidence of Endometriosis was found. Pathological examination showed the cyst was full of “gray-green cloudy fluid” and came back as pancreatic Endometriosis.

In December of 2018, a 26-year-old woman reported abnormal periods and was hospitalized due to left abdominal pain. It hurt even when she wasn’t on her period. Her medical history only revealed that she had a prior c-section, but no history of Endometriosis or pancreatitis. A CT Scan found a 7cm cyst inside of her pancreas, which was confirmed in both an MRI and endoscopic ultrasound. A benign tumor was suspected and surgery was performed to remove part of her pancreas as well as her spleen. A biopsy was performed and it was found that she had endometrioma insider her pancreas. She underwent surgery and they removed the portion of her pancreas, as well as a bit of her spleen which was affected by the mass.

Resources:

Acta Radiologica Open (Article; Sept. 2016) – A Rare Case of Pancreatic Endometriosis in a Postmenopausal Woman and Review of the Literature

Europe PMC (Abstract; Jan. 2000) – A Case of Hemorrhagic Cyst of the Pancreas Resembling the Cystic Endometriosis.

Gastroenterology (Article; June 1984) – Endometrial Cyst of the Pancreas

HealthlineWhat’s Causing my Epigastric Pain and How Can I Find Relierf?

Journal of Minimally Invasive Gynecology (Abstract; July 2012) – Endometriosis of the Pancreas (you may access the full article here)

Korean Journal of Internal Medicine (Article; 2002) – A Case of Pancreatic Endometrial Cyst

Pancreatic Cancer Action NetworkWhat is the Pancreas?

Southern Medical Journal (Article; Oct. 2004) – Endometriosis of the Pancreas Presenting as a Cystic Pancreatic Neoplasm with Possible Metastasis

Surgery Today (Abstract; July 2011) – Pancreatic Endometrial Cyst: Report of a Case

The Japanese Society of Internal Medicine (Article; Dec. 2018) – A Rare Case of Pancreatic Endometrial Cyst and Review of Literature

The Journal of Urology (Abstract & Article; Jan. 1986) – Pancreatic Endometriosis Presenting as Hypovascular Renal Mass (you may access the full article here)

World Journal of Gastroenterology (Article; Feb. 2017) – Pancreatic Endometrial Cyst Mimics Mucinous Cystic Neoplasm of the Pancreas

~ 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

Pain & Poops: Then & Now

Well, here we are in 2019 and I’m starting my blog off talking about poop…Why? Because I’m SUPER excited to share with you how different my bowels (and pain levels) have been since my recent bowel resection and Endometriosis excision surgery.

If you weren’t aware, I underwent a bowel resection to remove deep-infiltrating Endometriosis from my small intestine. I’m waiting on a final surgery report before I blog about the specifics, so please be patient. Hopefully in a few weeks.

Until then, embrace this discovery with me! Here’s my pain journal summary for November of 2018:

And here’s my pain journal summary for January of 2019:

I went one step further and compared my bowel movements and their pain levels for the first eight days of November and of January! The difference is…staggering!

Look how numbers have completely shifted!!! I was flabbergasted when I did the comparison! I mean, I’ve obviously noticed a huge difference in my quality-of-bathroom-life, but wasn’t expecting THIS!

If I ever needed any sort of reassurance that my bowel resection and Endometriosis excision surgeries were the right call, this is it. Not that I needed that validation. And am so grateful to Dr. Mel Kurtulus and Dr. Matthew Schultzel for their expertise, compassion, and friendship.

But I was SO excited about the difference that I wanted to share it with you…And bring in the New Year with…poop-talk.

Stay tuned. I’ll be blogging full-force once again now that I can sit at a computer for longer periods of time. And I cannot wait to share with you the details of my last surgery and the findings.

Be well. I’ve missed you Readers. And I’m so pleased to be back in the saddle, so to speak.

Purging my fears

As you know, this blog isn’t just a place for me to research and write about Endometriosis, or to share stories of other EndoWarriors…but it’s also my therapy.

And today I need to just let some stuff off of my chest:

Late yesterday afternoon, I received the final official confirmation that my bowel resection surgery is all approved by my insurance company.¬† November 26th is 10 days away. And it’s going to happen…

Prior to yesterday’s official proclamation, I was 100% purely excited.¬† “Get this damn disease out of me,” has been my honest response, followed by, “I’m not scared, I’m in good hands, I’m ready.”

Now? I feel as if I need to crawl into the depths of my nerve-wracked stomach.¬† I want to pull all the warm darkness around me and just shiver.¬† I’m scared.¬† I want to cry.¬† I want it to be over with.

All of the “What Ifs” come bubbling up.

What if they don’t find anything?¬† Even though there are photographs of big endo lesions on my small intestines…this is still my biggest What If.

What if we need to reschedule surgery because of (fill in the blank)?

What if they find more Endo and have to take MORE of my guts than originally intended?

What if I need an ileostomy bag?

What if the surgery doesn’t resolve my current pain?

What if my bowels don’t heal right, I leak, and have to go back in?

What if I suffer from future bowel blockages due to scar tissue?

What if I don’t wake up…?

I know in my heart-of-hearts that everything will be okay.¬† I’m in wonderful surgical hands.¬† I trust my surgeons completely. They’re incredible.¬†¬†I’ll receive great care at Scripps Memorial Hospital for a few days until I’m released. My Mum will also be with me while I’m there.¬† And yet I’m still fucking terrified.

I’m terrified I’ll be perceived as weak in the hospital.¬† There’s a specific shoulder pain that comes with abdominal surgeries that makes me howl in pain.¬† It’s a noise I cannot suppress…¬† And for days after my prior laparoscopies, I am unable to get in and out of bed alone.¬† I cannot sit up without help.¬† I can’t use the bathroom without someone to help me get up and down.¬† I’m sure the nurses know this and are used to it, but I’m still worried I’ll be “that patient.”

And to top it all off?¬† I may very well be on my period during my surgery…

When friends, co-workers, and family members ask me, “Will this surgery fix you?” – I have to take a breath.¬† Then I have to tell myself I’m not broken.¬† THEN I¬†explain (again) that this is an incurable disease.¬† That I hope it fixes it for a long while.¬† That I hope this specific surgery removes the source of my current pain.¬†¬†

One co-worker even said, “I feel so bad for you because you’ve had so many health problems over the past few years.”¬†¬†I wanted to smack her and yell, “I don’t have health problems.¬† I have Endometriosis.”¬† Such a knee-jerk reaction.¬† ¬†But I felt like she never really listened as I explained the illness, what it can do, why it can require so much surgery.¬† ¬†And it just hurt.

But having to explain it over and over again gets exhausting.

I pooped today.¬† The third time since 6:30 this morning.¬† And I cannot adequately express the agony of it.¬† First the right side (where my constant pain is) screamed.¬† Then the broken glass and barbed wire scooted across my lower abdomen…where it met up with the burning side of my left lower abdomen (which burns every time I have to shit) and finally killed me on the way out with a piercing pain.¬† Sitting on the toilet at work, trying hard to breathe through it and not cry out while tears escape the eyes…No good. No good at all.

Ten more days of nerves, and wondering, and playing this damn game in my head.  Ten more days of constant pain.  Ten more days of just really wanting it to be over with already.

I AM scared and nervous.¬† I’m in good hands.¬† I’m ready.¬† And I’m excited.

9 days, 18 hours, 59minutes, and 15 seconds to go…

And for some reason, as always, acknowledging and writing out what the heck is upsetting me always does help…at least a little bit.¬† So, thank you for being here to read this.¬† ¬†

Endometriosis & the Kidneys

kidney

In the past, I’ve researched how Endometriosis can affect the renal system, specifically the¬†bladder or ureters, and how that could even cause blockages that cause kidney issues and severe problems.

Today, I’m going to talk about Endometriosis and the actual kidney.

A study published in October of 2018 discussed a 45-year-old woman who had flank pain and blood in her urine.¬† Imaging studies found a mass on her left kidney.¬† A surgery was performed to remove the suspected renal mass and a portion of her kidney, and pathology confirmed it was an Endometriosis lesion.¬† It was removed from her “renal parenchyma,” which is the solid part of the kidney that filters blood and makes urine.

My mind was blown!!

That one little abstract led me down a rabbit hole: how many others out there have had Endometriosis lesions on or inside of their kidneys…not just the bits and pieces and tubes leading up to our bean-shaped organs?

But before I get into the studies of women who had Endometriosis growing on (or inside) their kidneys, I want to outline the symptoms of what renal Endometriosis may feel like:

The Symptoms

Here’s a list of symptoms I’ve been able to find that have been associated with renal Endometriosis (you may suffer from some or none of these):

  • Blood in urine
  • Flank pain
  • Renal colic (pain that may feel like you have kidney stones)
  • Lower back pain
  • Symptoms may (or may not) get worse during menstruation
  • Swelling
  • Uretal obstruction
  • Some people had zero symptoms

As always, keep track of all of your symptoms, your pain, any triggers, and the timeline of when these symptoms appear.¬† It’s very important to walk in with tangible proof of your symptoms.¬†¬†And, as always, these symptoms may also be signs of sooooo many other things.¬† It may not be Endometriosis affecting your renal system, but then again…it may.¬† Don’t discount it.¬† Please, talk to your doctor.

Published Studies of Endometriosis on the Kidneys

Besides the study referenced above, here are more examples of Endometriosis being found involving kidneys.  I could no locate several studies that were published between 1950-1970, but I still found plenty!

Be advised: renal Endo is considered incredibly rare!¬† That being said, feel free to print out any examples in the Resources section below if you’re wanting to talk to your doctor about it.¬†¬†As mentioned in one study, “…endometriosis of kidney is a rare¬†manifestation of a common disease.”¬† But be aware that it can happen.¬† Track your symptoms. And always talk to your doctors.

The first known published case of Endometriosis inside the kidney came out in 1943…seventy-five years ago!¬† Victor Marshall did a lot of research prior to publishing his study and couldn’t find any references to Endo inside the kidney, but did refer to a prior case with an instance of cells that might be Endometriosis on the exterior of the kidney.¬† But, back to Mr. Marshall’s case at hand:¬† a 40-year-old woman sought medical care.¬† Sixteen months prior, she developed a small mass in her upper left torso; six months later, she had complaints of constant swelling and left flank pain.¬† Sometimes the bump was tender, but her symptoms didn’t increase or decrease around her period.¬† Two months later, she vomited what she thought was blood.¬† A few months later, she found herself at Dr. Marshall’s clinic.¬† The chest and GI x-rays were normal, but the pyelogram (a type of imaging study) showed her left kidney was enlarged, deformed, and functioning less.¬† She was admitted to the hospital for further care.¬† The physical exam revealed a round firm mass where she told them it was.¬† Her lab results, including her urine tests, were all normal.¬† Surgery was performed.¬† The mass in the kidney oozed “old bloody fluid,” when it was pierced and they decided to remove her kidney.¬† Biopsy revealed several cysts inside, one of which oozed 500cc of “dark brown old blood.”¬† I had to look up how many ounces 500cc was.¬† Are you ready?¬† 16 ounces!¬† That’s MORE than a 12-ounce can of soda!¬† All of the pathologists who reviewed the lesions inside the kidney agreed:¬† it was “endometrium tissue.”

A 1950 entry in The Journal of Urology is about a 29-year-old woman in 1948 who checked into a local Chicago hospital because of blood in her urine, which had occurred on and off for the past three months.¬† In 1946, she also had blood in her urine but it lasted for only two weeks.¬† Her symptoms did not coincide with her period and didn’t seem cyclical in nature.¬† A physical examination revealed nothing abnormal about her kidneys or abdomen.¬† Urine tests were positive for red blood cells. An x-ray (excretory urogram) was performed: the left kidney appeared normal, but they had a hard time visualizing the right kidney.¬† A cystoscopy revealed the bladder was normal.¬† A pyelogram found the right kidney had abnormalities.¬† Surgery was performed and¬† showed several bulging areas which had cysts, one of which was drained of 20cc of “chocolate colored fluid.”¬† At that point, her entire right kidney was removed.¬† Pathology confirmed Endometriosis.¬† Slides of the kidney tissue were also presented at a seminar of pathologists and the group agreed with the renal endometriosis diagnosis.¬† By 1950, the patient had no recurrence of symptoms.

In 1969, a 43-year old woman was admitted to a Nevada hospital for blood in her urine that had been on and off for the past three months.  She had a history of heavy and painful periods and received a surgically-confirmed Endometriosis diagnosis seven years ago.  A cystoscopy and pyelogram confirmed bloody urine was coming from her right ureter.  A large defect was also visualized on her right kidney (it was a presumed blood clot since it appeared full of blood) and a renal tumor was also observed.  Surgery was performed and they removed her right kidney and most of her right ureter.  Many small cysts were found inside the kidney, and each contained bloody fluid.  The tumor on her kidney was akin to an endometrial polyp.  There was no Endometriosis located within her ureter that was removed.  She continued to treat with her gynecologist for her Endometriosis and was placed on hormone therapy.

A 1976 study was published of a 23-year-old woman who complained of lumbar pain.¬† Four years earlier, she had a urinary tract infection and two prior kidney infections.¬† ¬†A year before she was admitted into the hospital, she complained of tenderness around her right kidney.¬† She was treated with antibiotics, but it didn’t diminish her pain. In fact, her lower back pain worsened and became constant.¬† Imaging studies of her right kidney showed a mass on her kidney.¬† Surgery was performed.¬† The 3cm mass was punctured and oozed yellow pus, which later tested positive for E. Coli presence.¬† ¬†While examining her kidney, another mass was found, which was a suspected clear cell carcinoma.¬† They removed her right kidney.¬† Pathology found the mass to be Endometriosis.¬† Since her surgery, she was symptom-free.

In 1980, a 40-year-old woman had a dull, aching pain in the right side of her body, just below her rib cage, for five to six months.¬† She had no other symptoms.¬† During a physical examination, a mass was found in her right loin.¬† An pyelogram was taken and showed excess fluid and loss of function of her right kidney.¬† Surgery was performed and her kidney was found to be enlarged.¬† A “glistening membranous” cyst was on her kidney wall.¬† Surgeons removed her kidney and biopsied the abnormality.¬† The cyst was filled with a “brownish gelatinous membranous fluid” (sound familiar?) and it was diagnosed that she had an Endometrioma on her kidney.

The British Journal of Obstetrics & Gynaecology published a study in 1991 about a 25-year-old woman.¬† In 1981, she¬†had blood in her urine, but all tests came back normal.¬† Over the next three years, the presence of blood was a daily occurrence.¬† She also developed back pain, which got gradually worse.¬† Her symptoms were worse after physical activity but didn’t seem to heighten when on her period.¬† In 1984, imaging studies found a possible tumor on her left kidney.¬† ¬†A puncture test was conducted on the cyst and renal Endometriosis was suspected from the pathology results.¬† The young woman was referred to a gynecologist.¬† She underwent a laparotomy and her surgeon discovered an endometrioma on her ovary; it was excised.¬† No other Endometriosis was located in her pelvis or abdomen.¬† After surgery, she received birth control pills, which she took for six months and her period stopped.¬† However, blood persisted in her urine.¬† Four months after she stopped the birth control pills, her back pain once more became severe and she continued to have blood in her pee.¬† She had a laparoscopy performed and there were three 1mm endometriomas discovered.¬† She was given Nafarelin (a GnRH agonist) for the next 11 months.¬† By the fourth week of treatment, the blood in her urine and her back pain stopped.¬† Once she stopped the Nafarelin she had another exploratory laparoscopy, in which no Endometriosis was discovered.¬† But two months later…her urine once more contained blood.¬† A CT scan showed a new cyst at the site of the original one on her left kidney.¬† Another puncture test was performed, but the results came back normal.¬† Three months later, she once more had constant blood in her urine and a recurrence of her low back pain.¬† She was once more placed on Nafarelin for another eight months.¬† After the first month of use, she was symptom-free and remained so at the time the study was published.

In 2006, a study was published in Saudi Medical Journal about a 38-year-old gal who had abdominal pain for about two months.¬† She didn’t have any history of painful periods, urinary symptoms, or irregular periods.¬† She was described as presenting as “toxic, sick looking” and feverish.¬† ¬† Imaging studies found an ovarian mass and an exploratory laparotomy was performed.¬† Her right kidney was enlarged and had lesions on it and her right ureter had dilated.¬† Surgeons removed her inflamed fallopian tubes and both ovaries.¬† They also took a sample of the kidney lesions.¬† Pathology confirmed that her ovary and the kidney lesions were Endometriosis.¬† After the surgery, she responded well to Danazol treatments.

A 2009 report is about a 46-year-old woman who complained of three months of lower back pain.¬† The pain wasn’t worse on her period.¬† Physical examination and palpitation revealed a mass in her left upper abdomen.¬† Urine analysis and blood tests were normal, but an ultrasound and CT scan confirmed a mass on her lower left kidney.¬† They believed she had a hematoma on her kidney and inserted a catheter (for six days) to drain it.¬† The mass shrank a bit after the drainage but didn’t disappear.¬† She had a follow-up visit scheduled for a month later but had to be admitted to the hospital prior to that date because of left thigh pain that caused her issues with walking, nausea, and vomiting.¬† She underwent a surgery to look at her kidney; the hematoma mass was removed from beneath the surface membrane of the kidney and biopsied.¬† She received a renal Endometriosis diagnosis; the Endometriosis was lodged beneath the hematoma.¬† There was no recurrence of symptoms a month after her surgery.

Now hold onto your hats…a 2012 study was about a 13-year-old girl!¬† This child had blood in her urine and suffered from cramps while peeing, pain in her lower back (more on the right side), and vomiting.¬† Her symptoms had been on and off for about two years and were worse around her period.¬† Imaging studies led the doctors to believe she had a kidney stone.¬† Upon physical examination, her abdomen was somewhat swollen and she had some tenderness near her belly button.¬† She underwent a barrage of tests and multiple various imaging studies.¬† The kidney stone diagnosis was replaced with a renal Endometriosis diagnosis.¬† The clinic did not want to conduct surgery to confirm their suspicions, though (they opine that invasive techniques on teenagers isn’t justified).¬† She was released and told to seek a surgery consult.¬† The authors do state, however, that her medical history, symptom history, the fact that it follows her period, and the nodule that showed up her kidney in imaging studies was enough to confirm their suspicions.¬† (This study was roughly translated from Russian to English and I fear I’ve missed immense details).

In 2013, a woman complained of sudden right flank pain.¬† She had a history of painful periods and lower back pain.¬† A mass was felt in the right upper quadrant of her abdomen and a CT scan confirmed the presence of a “huge” renal tumor on her right kidney.¬† She received two months of conservative treatment, but the tumor did not recede.¬† Surgery was performed, her kidney was removed, and a biopsy confirmed it was Endometriosis.¬† Afterward, she was prescribed Danazol and had no recurrence at her 10-month follow-up.¬† (Sidenote: there’s a photo of the inside of her kidney showing the cysts within…)

Published in 2015 in the International Surgery journal, one study followed a surgery that took place in 2013.¬† The purpose of this study was to warn others about the misdiagnoses that may occur with renal Endometriosis.¬† A 37-year-old woman had recurrent dull pain in her right lower back.¬† The pain worsened during her period for the past six months.¬† She did not have any blood in her urine or even abdominal pain.¬† Just back pain.¬† She also didn’t have a history of painful periods, painful sex, or prior abdominal surgeries. An ultrasound found that she had fluid backed up into her right kidney as well as kidney stones present in the kidney and right ureter.¬† An x-ray confirmed these findings.¬† She was given drugs to treat the stones, as well as underwent shock wave therapy.¬† Neither made her back pain go away.¬† She was admitted to the hospital in October.¬† Further x-rays showed the stones were still present, and that her kidney was deformed.¬† A CT scan showed a mass on the lower right portion of her kidney.¬† It was thought to have been a tumor.¬† Surgery was performed to remove her kidney (due to the size of the suspected tumor).¬† No other lesions or masses were found around her kidney.¬† When cut, the mass contained “brown, serumlike fluid” within the kidney.¬† Pathology confirmed that the mass was Endometriosis, and not a tumor after all.

A later 2015 study was about a 53-year-old woman who had gone to the emergency room because of flank pain that she had for several years and she had a mild fever.  An x-ray showed she had stones in both kidneys.  An ultrasonogram also showed that her right kidney was contracted (her kidney appeared scarred and atrophied).  She was admitted for a suspected kidney infection.  A CT scan showed an abscess in her right kidney, too, which invaded into her psoas muscle.  The abscess was drained and three days later her right kidney was removed.  Lesions were found within the kidney and she was diagnosed with renal Endometriosis.   And the patient was symptom-free at her follow-up appointments.

Now what?

This blog entry is not intended to scare you.  It is meant to educate you.  Endometriosis has been documented on and inside the kidneys.

If you fear you may suffer from renal endometriosis, keep track of your symptoms.¬† That’s crucial.¬† Bring your diaries and notes and these studies to your physician.¬† The good news? In all of these studies, a mass was visualized in imaging studies.¬† And in most cases, a physical mass was felt during a physical examination.

Start there.

Even if you don’t have renal Endometriosis, you really can’t mess around with symptoms of any type of trouble with your kidneys.¬† Backaches? Abdominal aches?¬† Blood in your urine?¬† Run to your doctor…whatever it may be, it’s not normal and may be a sign of something far more detrimental to your health.

Resources:

BMC Research – (Article, Oct. 2015) – Endometriosis in a Kidney with Focal Xanthogranulomatous Pyelonphritis and a Perinephric Abscess

British Journal of Obstetrics & Gynaecology Р(Abstract, April 1991) РRenal Endometriosis Treated with Gonadotrophin Releasing Hormone Agonist.  Case Report. (full article may be accessed here)

Child’s Health – (Abstract, 2012) – Renal Endometriosis in a Child (full article may be accessed here…head’s up – it’s in Russian.¬† I used DocTranslator to read it in English)

Fertility & Sterility – (Abstract, July 2009) – Renal Endometriosis Presenting with a Giant Subscapular Hematoma: Case Report (full article may be accessed here)

Il Giornale di Chirurgia РJournal of Surgery Р(Article, Dec. 2017) РRenal Endometriosis Mimicking Complicated Cysts of Kidney: Report of Two Cases

International Surgery – (Article, 2015) – Renal Endometriosis Tends to be Misdiagnosed as Renal Tumor: A Rare Case Report

Journal of Endourology Case Reports – (Abstract, Oct. 2018) – Renal Endometriosis: A Case of an Endometrial Implant Mimicking a Renal Mass (full article may be accessed here)

National Cancer Institute Anatomy of the Kidney & Ureter

Saudi Medical Journal – (Article, 2006) – A Young Woman with Endometriosis of Kidney

Scandinavian Journal of Urology and Nephrology – (Abstract, March 1976) Renal Endometriosis (full may be accessed here)

The Journal of Neurology – (Abstract, March 1980) – Endometrioma of the Kidney: Case Report (full article may be accessed here)

The Journal of Urology – (Partial article, Dec. 1943) – The Occurrence of Endometrial Tissue in the Kidney (full article may be accessed here)

The Journal of Urology Р(Partial article, Oct. 1950) РEndometriosis of Kidney (full article may be accessed here)

The Journal of Urology – (Partial article, Sept. 1969) – Renal Endometriosis Associated with Hematuria (full article may be accessed here)

Urological Science – (Article, March 2013) – Renal Endometriosis Mimicking an Angiomyolipoma

~ 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¬†ūüėȬ†Validate my writings. ¬†Or challenge them. ¬†And ALWAYS feel free to consult with your physician. Always. ¬†Yours ~ Lisa

The Bowel Resection is Coming!

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The red circle is the approximate area where my Endo is

If you’re one of my dedicated readers, you’ll remember that I had my third Endometriosis excision surgery on July 18th of this year.¬† You may remember that during that surgery it was discovered that I had a few big ol’ chunky Endo lesions on my bowels (where my small intestine and large intestine meet) that couldn’t be superficially removed.¬† A colo-rectal surgeon was brought into my surgery and advised that a bowel resection should take place.

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The only problems?

  1. I hadn’t prepped for a bowel resection (oh man, it’s a whole process for the few days leading up to surgery);
  2. The colo-rectal surgeon wasn’t in my insurance network.

The plan?¬† That surgeon was going to apply to become a member of my network and I’d have my bowel surgery with him as soon as everything was legit.¬† I met with the colo-rectal surgeon on August 8th for a consultation (oddly enough covered by my insurance since he poked his head into my surgery) and had a discussion of our future plans.

I was told in August that the network acceptance process could take anywhere from one to three months.¬† So, I sat patiently…for a while.

A month passed.¬† Then I called my insurance company to see if there was anything they needed from me to speed along the process.¬† Nope.¬† Then I called my colo-rectal surgeon’s office to ask the same question.¬† Nope.¬†¬†Big fat nopes all the way around.

So I waited another month and then googled my medical group assigned by my insurance company.  On their webpage was the name and telephone number of the Director of Networking Рthe person to whom inquiries were to be made if you were a physician looking to join the medical group.

So what did I do? I called and left a voicemail message.  A week later, I left a second message.  And a week after that, I left a message with her secretary.

The day I left my third message…she called me back. The Director! I don’t know what I expected, but certainly not what happened next.

She apologized for not calling me back sooner but stated she was having my medical history and records pulled to review.¬† She found that there was no mention of any pending referral or need for a bowel resection; which wasn’t unheard of since the surgeon wasn’t (yet) an in-network physician.¬† BUT Dr. Schutzel (my soon-to-be-colo-rectal surgeon) likely wouldn’t be approved for another three months. Early 2019!¬† I wanted to cry.

I briefly filled her in. Well, that’s a flat-out lie – you know I can’t do anything “briefly.” I mean, look at this blog entry already!¬† Anyway…she heard me out. All of it.¬† And offered a suggestion:¬† have my gyno-surgeon put together a written request explaining my need for a bowel resection and why we wanted it to be this particular out-of-network surgeon (rather than one of the four already in-network).¬† Then needed to tack on a copy of my July op report, and the Directory may…and I stress the word may…be able to get a one-time-only approval to have the out-of-network (aka yet-to-be-approved) surgeon covered by my insurance to do my surgery.

I gushed my appreciation and thank yous to her and hopped on the phone with my gyno’s office.¬† They prepped the letter the next day and sent it off!¬† A few days later: *abracadabra* I get a phone call (which I missed) and listened to in my voicemail.

It was the Director of Marketing…calling me after hours to let me know that the request had been APPROVED and the next step was to coordinate the surgery date!

OMGOMGOMG

She did it!! We did it! But I never would have known it was possible if it weren’t for her taking the time to review my records, listen to my tale, and offer the suggestion!

Literally less than a week from the day we spoke to the day she called to let me know it was approved!¬† I’m so grateful to her and my gyno’s office!

The following morning, I called the colo-rectal surgeon’s office to see if they needed any information from me.¬† By lunchtime the same day…everything was all set up:

My bowel resection is scheduled for Monday, November 26, 2018, at 7:15 in the morning!

And to make things even better?

  • It will be a robotic-assisted laparoscopy, using the DaVinci system (which is what’s been used for my three prior laparoscopies); Aaaaaaaaaaaaaaaaaaaaaaannnnnnnd…
  • Dr. Kurtulus, my Endometriosis excision surgeon (and gyno and incredible human being) will be scrubbed in and at-the-ready to take a peek under the hood to look to see how I’m doing since my July surgery! And to excise any Endo they may spot along the way!

The double-whammy!!

I’m so comforted by the fact that my medical care team fought for this to be approved and scheduled so quickly.¬† But the super-duper comforting thought?¬† Dr. Kurtulus, my gyno and my surgeon, made himself available (and insisted on being present) for my colo-rectal surgery.¬† And influenced the decision for the surgery to be robotic-assisted.

And…this entire endeavor is a huge reminder on why we should be persistent and self-advocate.

Now here’s my question to you gals and guys:¬† If you’ve ever had a bowel resection, do you have any tips for surgery prep, recovery, or diet?¬† I have my pre-op packet and I’m sure I’ll receive a whole slew of post-op instructions…but I also like to hear your experiences and suggestions.¬† ¬†If so, drop me a comment below! Please!!

I’m so excited. So ready.¬† So appreciative!

 

 

Endometriosis Caused Leaking Out of a Hole by the Hip?

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What the heck am I talking about?

There’s a study published in August of 2018 that I just read, and it threw me for a loop. So I wanted to share it with you.

A 52-year-old woman went to her Primary Care Physician because she had a weird leaking hole near her right hip.¬† It just drained a nasty discharge.¬† He put her on antibiotics for two weeks, but it didn’t resolve.¬† After suffering from the drainage for two months, she went to the emergency room.¬† You can see a photograph of her little hip-hole here.

Her prior medical history included a¬†nephrectomy (the removal of one or both kidneys) and a c-section.¬† She also denied any changes to her bowel habits, any signs of infection, or abnormal weight loss.¬† She didn’t have any signs of fever, her white blood cell count was normal, her blood circulation was fine, and her abdomen was a little bit tender.

A CT scan found a “cystic lesion” near her lower right pelvic area and a fistula that exited out of her body near her right hip.¬† Now before I go on, I had to look up what the heck a fistula was.

In my super layman understanding? It’s a hollow tube from one place to another.¬† In this poor woman’s case? From her bowel to the outside of her body.¬† The authors classified it as an enterocutaneous fistula…You can only imagine what that discharge must have been. (Ewwww)

Due to the surprising results of the CT scan and a concern for a bowel perforation, she underwent a laparoscopy.¬† ¬†The cystic lesion discovered in the CT scan was “severely adhered” to her pelvic floor and to her bowels where her small intestine and her large intestine meet, aka the terminal ileum.¬† They removed the mass and the section of intestines in one fell swoop and the biopsy results came back as positive for Endometriosis…so she received a diagnosis of Ileal Endometriosis.¬† The authors of the study believe that this Endometriosis caused the¬†enterocutaneous fistula…the hole that she had been leaking discharge from her right hip.¬† She was released from the hospital six days later without further incident.

Not only is this incredibly rare…it’s believed to be the first case of its kind.¬† So please don’t panic at every oozing sore you may have on your body.¬† BUT…do arm yourself with the knowledge that it can happen.

I was amazed and flabbergasted by this study.¬† Of course, the authors don’t opine as to how the ileal endometriosis caused the¬†enterocutaneous fistula, but chalk that up to one of the many mysteries of our illness.

Resources:

Journal of Gastrointestinal Surgery – (Abstract; Aug. 2018) Ileal Endometriosis: a Rare Cause of Enterocutaneous Fistula¬† –¬†Please contact me if you’d like to read the entire article

Inner BodyTerminal Ileum

UCSF Health –¬†Enterocutaneous Fistula

~ 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¬†ūüėȬ†Validate my writings. ¬†Or challenge them. ¬†And ALWAYS feel free to consult with your physician. Always. ¬†Yours ~ Lisa

Aly Needs Our Help: An Endometriosis Survey

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Yesterday we shared Aly’s story with you.  Today, we’d like to share an Endo project that Aly is working on…and she needs our help!

If you didn’t read Aly’s Endometriosis journey, you can do that here.  Or here’s a quick introduction from Aly regarding her project:

I have been struggling with endometriosis for 7 years now plus 7 other chronic illnesses and I am only 21. I am a graphic design student and for my senior project, I want to create a catalog/brochure that would be available in doctor’s office or clinics to:

  • give patients information about the disease
  • ways to help with the pain and symptoms
  • share stories
  • find support
  • to help bring awareness about endometriosis
  • and a way to let women know they are not alone in the fight.

She has created a survey that she is asking people to take to help her with my research to create a catalog/brochure that people won’t just throw away. She‚Äôs also open to suggestions for the content, as well.¬† If you‚Äôd like to participate, here is the link to her survey:¬†¬†https://apps.facebook.com/my-surveys/endometriosis?from=admin_wall&seed=838

I’ve taken the survey and it took a few minutes and had some valuable questions to answer.