Endometriosis: Finding the Silver Lining

Yellow and silver awareness ribbons

As you may know, we host a support group of EndoWarriors here in San Diego. Our online community on Facebook also has Southern California EndoSisters, and some that have moved away from us. But we have quite a tight-knit family.

Recently, we’ve been looking to find the positive spin in our illness and diagnosis. And I wanted to share that with you today (and I’ll be updating it as we receive new thoughts).

If you would like to let us know what positive things Endometriosis has brought to your life, please feel free to contact me. I’ll add you to our collection of Silver Linings:

1) My pain and suffering were validated, 2) I found you Warriors, 3) We’re changing lives and helping others, 4) I’ve found a surgeon who gives me my life back albeit every few years, 5) I’ve learned to better honor my body when I need those all-important Self-Care days, 6) and I’m no longer embarrassed to talk about my period or pooping or bringing a box or tampons or Fleet enemas to the cash register. ~Lisa Howard, 1/30/19


1. I’ve learned that chronic illness doesn’t drive loved ones away, it just shows who truly cared in the first place.
2. Endo warriors are the most amazing women I’ll ever meet and greatest friends I have made in my adult life.
3. Endo forced me to change my diet much much healthier, I’ll give you credit for that endo 😂😂😂
4. That I’m so much stronger than I give myself credit for! ~Michelle Barninger, 1/30/19


That I need to care for myself. I’m glad the pain wasn’t all in my head like I was told for years. ~Carissa Almanza, 1/30/19


1–I’ve been reminded to trust my gut and push for what I feel is right. 2–Learning to listen to my body even closer than I did before and to give myself space and time and comfort. 3–Working to find the treatment plan/things that work for ME. 4–Paying it forward. You guys have helped me to feel confident (and knowledgeable) to do that. TODAY… I felt like I was having a mental breakdown…started crying and feeling a lil crazy. I stopped to listen and realized what was really happening is that I had to poop and I think my body was working so hard to move it out — besides waste, my body was also getting rid of emotion, anxiety and toxins and junk. I felt 100 times better after–mentally and physically. ~Anonymous, 1/30/19


Everything that I’ve gone through since 15 wasn’t in my head, I’m not a wimp and I WAS right when I felt something was wrong.
I can now help educate and bring awareness to women and teens around me so they don’t have to fight as hard as I did (hopefully).
Learning to understand my body more now than ever! Also learning how to chill so my body can attempt to recover a bit. ~Starr Stanonis, 1/30/19


I’ve learned to use my voice and speak up about my endo. I tell people the truth and that it’s not just a small pain or a bad period it’s a change in my lifestyle I’m learning to adapt to.
I’ve gained some awesome friends/endo sisters/warriors.
I’ve learned theres awesome support systems to help you deal with everything even when those closest to you dont always understand no matter how you try to communicate it. ~Kristen McDonald, 1/30/19


 I love these! You guys are awesome! 💛🌼

Endo has taught me that listening is just as important as speaking up, that self care is just as important as caring for others, & that I’m stronger than I look. 😉💛 ~Heidi Baurmann, 1/31/19


I love this idea!! One thing comes to mind. I’ve gained my voice! I’ve always had a hard time telling others how I feel, especially if it is negative. This disease has made me step up and say what I feel, how I feel, what I’ve learned and what I want/need!! I still have hard days were I cower and can’t speak (my last drs appointment) but I’ve come a long way in this area and am proud of myself for that growth. I love you ladies so very much!! 💛💛💛 ~Lisa Pajak, 1/31/19


1- because of Bloomin Uterus I have gained strength in my words
2- I’ve learned to speak out for myself and have faith in what I know
3-I’ve met some of the most incredible, brave and strong women. 
4-I get to use my photography to spread awareness globally about a disease that affects everyone on the planet and will hopefully bring change for better care and understanding. 
5-I’ve learned to understand my body and it’s needs beyond Endo. 
6- because of you Lisa Howard my life is better. ~Brandy Sebastian, 1/30/19


I know more about my body now, literally have learned so much about functioning and just general knowledge of human anatomy. That I am definitely not alone, it might feel lonely but millions are struggling so I am grateful for support and and knowing that I am not crazy. My thoughts and feelings aren’t off or nuts. I really am ill and that is okay as long as I’m pushing towards wellness. ~Amanda Dahlin, 1/31/19


(Updated March 25, 2019)

ABC 10 News Interviewed Local EndoWarriors About Lupron Depot

Stillframe from ABC10 story about San Diego Endosisters who speak about about Lupron Depot

Jennifer Kastner of ABC 10 News San Diego reached out to Bloomin’ Uterus to see if we had any of our local Endo Warriors that had treated with Lupron Depot. Several of us had and jumped at the chance to share our experiences on the drug.

Five EndoSisters, Jennifer, and her cameraman Adam met for a two-hour interview one afternoon early this year. It was an incredible experience. We each had the opportunity to share our Endometriosis stories and our experiences on Lupron Depot.

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Feel Good Fridays

Box labeled "Care Package"

This one goes out to all of you who are having a crazy, busy week; or finding no time to think about yourself, let along CARE for yourself:


“Respect, Love, and Value yourself. Always remember to be good to yourself by taking care of yourself. Make yourself a priority and know that it’s okay. Don’t feel guilty for loving yourself, first! You’re just as important as anybody else.” 
― Stephanie Lahart

Remember, you are worth every bit of love, compassion, and care that you bestow upon other. You just have to remind yourself that you are. Self-care is so very, very important: mentally and physically.

I hope you have a wonderful weekend. Love, Lisa

Feel Good Fridays

Stickman holding a flower with hearts all over

It’s Friday! And happiest of Fridays!

It’s been a beautiful week of rain here in San Diego, California. We don’t get it enough, but we’ve gotten it all week this week! I looooove it! I just want to snuggle up under a heavy blanket, sip hot cocoa, and read a book! But…work beckons!

I hope you enjoy today’s quote as much as I do. It’s lengthy, but it’s amazing:


“Don’t let the expectations and opinions of other people affect your decisions. It’s your life, not theirs. Do what matters most to you; do what makes you feel alive and happy. Don’t let the expectations and ideas of others limit who you are. If you let others tell you who you are, you are living their reality — not yours. There is more to life than pleasing people. There is much more to life than following others’ prescribed path. There is so much more to life than what you experience right now. You need to decide who you are for yourself. Become a whole being. Adventure.”  ~ Roy T. Bennett

Whatever you may be going through, or what decision await your future, do it for you. Act for you. Decide for you. Whatever needs to be done, do what YOU truly wish do to. No one else.

Live your life.

…and have a glorious weekend! Love, Lisa

Blogs I updated this week:

Bladder & Endometriosis – added a 2018 study of a woman who had blood in her urine, flank pain, and nausea. Turns out: endo of her ureter.

Endometriosis & the Lungs – added a 2018 study of a woman’s with repeated fluid build-up in her right lung cavity. Initially treated for pneumonia, she was later diagnosed with thoracic Endometriosis.

Endometriosis on the Skin – added a Sept 2018 study about spontaneous umbilical Endometriosis.  

What is Endometriosis – added a link that Endometriosis can be found on or inside the pancreas

Blogs I published this week (in case you missed it):

Endometriosis & the Pancreas – cases of Endometriosis and Endometriomas being found on/inside the pancreas

My 4th Endo Excision Surgery – what happened? what’d they find? how am I feeling? All the goods!

My 4th Endo Excision Surgery

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

Before I get started, let me explain the image above. A talented artist by the name of Ivy Denton created it for me (they also created the EndoGuy and PoopChuteSnakie you’ll see below). They’re taking commissions if you’re interested in throwing ideas their 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 2018 during an excision surgery 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.

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Endometriosis & the Pancreas

Diagram of liver, stomach, pancreas, and gallbladder

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

Feel Good Fridays!

Positive sign

Well here we are, my first Feel Good Friday in a loooong while! It’s good to be back and I hope you’re doing well.

Today’s quote is to bring in the new year right: on a positive note.


“Staying positive does not mean that things will turn out okay. Rather it is knowing that YOU will be okay no matter how things turn out.” ~Unknown

You will make it through (fill in the blank). Whatever it may be, you will push through. You will survive this. You will endure.

Try your best to find that silver lining through the difficult times. Embrace something positive. Or even just think happy thoughts. You *have* to make it through. And you will.

Love you guys. Happy Friday, and have a wonderful weekend.

Yours, Lisa

Pain & Poops: Then & Now

Happy poop with daisy on it's head

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.

Embrace this discovery with me! Here’s my pain journal summary for November of 2018:

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