Share Your Story: Caroline

Young woman in hospital bed giving two thumbs up and smiling

Caroline was diagnosed with Endometriosis when she was 13 years old, and her fight has been a well-fought and busy one! Now 15 years old, she shares her journey with us today!

Caroline’s Journey: My name is Caroline. I am a 15 year old girl and deal with endo in everyday life. Lets start with a little info about me. I am a competitive swimmer, my team is very intense.

I was diagnosed with endo at age 13. Before endo with many doctors and tests including colonoscopy, endoscopy, MRI, cat scans and lots of ultra sounds and internal and external tests the found nothing wrong with me. I did find out I had IBS and now am on medication. We really assumed all my chronic pain was that and constipation on weekly basis.

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Endometriosis & the Diaphragm

Courtesy of Wikimedia

If you’ve been a long-time follower of the blog, you may remember in 2014 when my surgeon found Endometriosis on my diaphragm. Several years later, it had completely disappeared (yay!). And it hasn’t been found in any of my subsequent surgeries. This research has been a lot of fun because of my own personal journey.

We’ve previously shared Endo Lady UK‘s experience with her own diaphragmatic Endometriosis, as well as a surgery to remove diaphragmatic Endo. We’ve even had a few brave readers, Lyndsay and Tabitha, share their own stories about endo on their diaphragm.

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Inguinal Hernia & Endometriosis

Inguinal canal in female courtesy of https://www.slideshare.net/vernonpashi/surgical-anatomy-of-the-inguinal-canal

Recently, a study hit my inbox about Endometriosis mimicking an inguinal hernia. So, of course, my interest was piqued and research had to take place! Be warned, though, it’s considered VERY rare. In all the literature I’ve read, only 42 cases have been referenced as being documented inguinal Endo. But when has rarity stopped me from sharing something about Endometriosis? Yeah. Never. Here we go!

What is AN inguinal hernia?

An inguinal hernia is the most common type of hernia (about 70% of hernias are inguinal) and usually manifests as a small lump in the groin area. Both men and women can get inguinal hernias, but it’s apparently more common in men. It occurs if there’s a small hole in your abdominal cavity which allows fat or intestines to seep through, which can a lump or swelling to occur.

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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

Share Your Story: Aly

Aly standing in front of a block wall

Aly was diagnosed when she was 15 years old.  Now 21, she shares her Journey with us, and she has been through so much.  She does, however, continue to fight and push ahead and raise awareness.  She’s an incredible woman.  And one hell of a Warrior.

Aly’s Journey: I have been a runner since I was four years old. It has always been my passion, but it was also where my pain began. In the spring of my junior year, I was running on the track as usual when I suddenly I fell to my hands and knees in severe pain. I vomited when I tried to get up. It was the beginning of a life-changing injury in which I would endure unbearable stomach pain that I still experience even though it has been 7 years since I was diagnosed.

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An Interview with a Silent Warrior.

Woman with finger pressed up against her lips

I know a few EndoSisters who have chosen to keep their diagnosis private for one reason or another.  During a month where many are shouting about Endometriosis to raise awareness, I wanted to remember the ones who choose to remain silent. And respect that choice.

I had the pleasure of interviewing an EndoSister who keeps her diagnosis a secret.  Not only to understand her choice and position better but to also give her a voice.  A forum to speak her peace, share in a way that doesn’t corrupt her privacy, and encourage those who also endure in silence.

I would introduce you to her, but she shall remain Nameless.  She shall remain Faceless.  Just know that she may be your friend, daughter, co-worker, or wife.

**

How old were you when you began to feel Endometriosis symptoms?
I think my symptoms started when I started my period at twelve. My periods have always been extremely painful. And I have always been scrunched up in a ball in tears.

Did you ever tell anyone then that you were having these issues?
Yes

How was that received?
I either got laughed at or told to be quiet. (That’s being exceptionally nice)

When were you diagnosed with Endometriosis?
Two years ago this past February

How did your diagnosis come about?
Doctors found a large cyst on my left ovary from an MRI then confirmed with two follow up ultrasounds.I had surgery to get it removed. The cyst was a chocolate cyst.  When my doctor came to talk to me after I woke up from surgery, she told me I had Endometriosis.  She also said that she had never seen so much endometriosis in someone and that it was everywhere.

How did you feel when you learned you had Endometriosis?
Not surprised, and a little relieved. It made sense why I have been in so much pain. The past few years the days without pain were less than the days with pain. After so long I just got used to being in pain all the time. Continual pain is normal.

But it was a huge weight lifted off of me knowing that I am not some weak ass pansy who can’t handle shit.  (Refer to the question three about how my pain was received).

Are you ashamed? Embarrassed? Angry? Confused? All the things? Which and why?Ashamed, no. Embarrassed, no. Angry, yes. Confused, no. Sad, yes. Frustrated, yes. Alone, sometimes. And so many more emotions. Some days are better than others. And some days I want to crawl into a dark cave and just cry and cry and scream (these days are few and far between).

Have you told your friends, family, or co-workers about your diagnosis?
Only my EndoSisters here know as well as 4 close friends. Two coworkers know I had abdominal surgery and one of them knows it was to remove a cyst, but neither of the coworkers know my Endo diagnosis. My family and other friends do not know.

If not, why have you decided not to tell people?
I have not told my family or my friends for one reason I still don’t feel comfortable even saying here. I also haven’t told my family because of my response to question number 3. I have not told three of my close friends because: 1) I know 2 of them can’t keep a secret. 2) the one that can keep a secret, has never been supportive of me when I talk about my pain and how much I hate it. She’s not outright mean, just dismissive about it. She also would not agree/support the reason I am not saying here.

How were you able to find EndoSisters? And how did it feel being able to connect and share with them?
I have a friend with Endometriosis and she directed me to Bloomin’ Uterus. To say it was difficult to open up to my friend does not even begin to describe what I was feeling and going through. (As a matter of fact, answering these questions is taking me hours and a whole lot of fucking tears to get through).

I had two friends offer to help take care of me when I told them about my surgery. One ended up with the flu the day before my surgery, so only one was able to help take me to and from the hospital and then spend two days with me (including my surgery day). I took 1 day short of two weeks off work, so I took care of myself the rest of the time. I contacted my friend with endometriosis two days after my surgery (through Messenger while pretty high on pain medication). I was in tears, frustrated and feeling completely lost and alone. I don’t think she will ever truly know how much she helped me that day and the extraordinary supportive woman she has been since. I would not be where I am today without her warrior-ness.

I have been able to connect with other ladies in the support group and they have been so incredible and encouraging. I get to talk to some ladies on a daily if not weekly basis. They make my days so much brighter.

I see what so many other ladies talk about in our support group and it kills me that they are going through this same shit. But everyone provides such support and love and understanding. These ladies are the best.

Sometimes when I do feel alone, I just go to our support group and read. And sometimes it helps a little and sometimes it’s like getting the huge bear hug I need. Even a heart or a like to a comment I make.

How has the silence affected you?
It sucks balls. Sometimes. But most of the time, I know it’s the right choice and I am comforted in this decision.

Do you think you’ll ever tell others about your illness?
No. A significant other maybe. But I find that terrifying. And yeah, yeah my boyfriend, husband or spouse should support me blah, blah… The thing is… You don’t know. You don’t really truly know until you have been put in this situation.

How do you think your announcement will be received?
One, I’ll be looked at with pity. And I fucking hate that shit. Two, everyone I haven’t told will be hurt that I kept something from them and they probably won’t trust me in the future. And they will probably think that I’m hiding things from them. Three, I will be told that it’s my fault that I brought it on myself for hating my periods and if I just accepted the pain I had from the beginning this would have never happened… Power of attraction… blah, blah…

Is the reaction of others learning so long after your diagnosis part of the reason for your silence?
Nope. Once I found out, I never planned on telling. (Even my friend I opened up to in the first place.)

What would you tell other women who have decided to keep their diagnosis a secret?
You’re not alone. You’re just not. Whatever reason/s you have for keeping silent is/are the right reason/s. You don’t need to justify yourself. Not to yourself. Not to anyone else. I don’t care if it’s your family, spouse, your best friend, your boss, who the fuck ever. YOU DO NOT HAVE TO TELL ANYONE IF YOU DON’T WANT TO.

How can your EndoSisters help you?
Just keep doing what you’re doing ladies. You are amazing and have helped me more than you can possibly know.

Is there anything else you’d like to share?
Nope.

**

What a beautiful and eye-opening experience for me.  I’ve always been an over-sharer and cannot imagine enduring this illness in silence.  But I love and honor my EndoSisters for their decisions to remain quiet.  Whatever those reasons may be.  If you have chosen to keep silent, stand by that decision.

Never let us guilt you or judge you into divulging your secret.

And know, like she said, you are not alone:  “You do not have to tell anyone if you don’t want to.”

To all those who endure and suffer in silence, you have my respect and love. Consider yourself gently hugged from afar.

And, to the Warrior who allowed me to interview her, I cannot thank you enough.  You are so incredibly strong and brave and have been an incredible presence in my life, and the lives of other EndoSisters.

Share Your Story: Shadoegirl19

Untitled-1 copy

Shadoegirl19 was just 16 years old when she learned she had Endometriosis.  Now 48 and living in Michigan, she shares her story with us today…and uplifting encouragement.  Not only was she able to have three beautiful children prior to a hysterectomy, but she, unfortunately, was also diagnosed with inoperable Endometriosis of her spine.  However, she remains incredibly strong and supportive.

Shadoegirl19’s Journey:   At the age of 16 I lost my right ovary to Endometriosis. I had suffered from about 13 (the on set of my periods) until the day my ovary basically exploded from all the endometriomas & scarring. The surgeon had never seen anything like it (lucky me).

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New Case Study: Endo … in the buttcrack

Buttcrack

A study published online in June 2017’s edition of the Journal of Gynecology, Obstetrics and Human Reproduction discusses a case of Endometriosis in a very peculiar and very extra-pelvic location: the buttcrack!.

A 24-year-old woman in France went to her doctor because over the past 2 years, a spot in her buttcrack would bleed during her period. She also suffered with painful periods, painful sex, diarrhea, and constipation. Upon examination, her doctors found a 3mm blue nodule in her buttcrack.  They immediately suspected cutaneous Endometriosis because of her pain, symptoms, and the fact that it bled during her period.  An MRI seemed to confirm their suspicions, but the patient refused excision of the lesion and no biopsy was conducted.  Instead, she opted for hormonal treatment.  Her choice of treatment offered her some relief.

They authors stress that any blue-ish nodule with similar symptoms be suspected of Endometriosis.  And they also stress the uncertainty with theories on how it ended up…there.  A very interesting thing…and just one more weird place on the body that it can manifest.

Resources:

Journal of Gynecology Obstetrics and Human Reproduction (Abstract; Oct. 2017) – Spontaneous Intergluteal Cleft Endometriosis

~ 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

Reader’s Choice: Pudendal Nerve Pain

A diagram of the pudendal nerve in a female human

One of our readers (who shall remain anonymous) asked if we could look into a topic: “Pudendal nerve pain-when is it endo and when is it not? Or is there even a way to know?”  So, here I go off to learn things and hopefully share a bit of that newfound knowledge.  And since this blog entry is Endometriosis-related, I’m going to keep the anatomy female (although men have a pudendal nerve and can also suffer from these symptoms).

Where’s the Pudendal Nerve?

The pudendal nerve is located back by the tailbone, and extends along the pelvic floor and around the pelvis, toward the rectal, gluteal, and clitoris areas.  There’s two: a right and a left pudendal nerve.  One or both pudendal nerves may cause issues, which we’ll get into right now!

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