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

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

Endometriosis Excision Surgery 3.0

Pre-surgery photograph of Dr. Mel Kurtulus and Lisa Howard taken by Brandy Sebastian, titled Resilience.
Dr. Mel Kurtulus and I before heading in. Photo courtesy of Brandy Sebastian; used with her permission

On July 18, 2018, I underwent my third robotic-assisted laparoscopic excision of Endometriosis by Dr. Mel Kurtulus ( of San Diego Womens Health).  As always, I love to share my experiences with you – not only to create awareness of this illness, but in the hopes that the process of my surgery (and later recovery) may help you, or others.

Before I go on, I just want to take a moment to express my joy in the above-photograph.  I am a detached head, floating beneath a fluffy warm-air blanket in the pre-op area, enjoying a wonderful moment with an incredible surgeon and man.  Thank you, Brandy, for capturing this.  And thank you, Dr. Kurtulus, for being so marvelous!

Okay, on with the nitty-gritty!

My mom, husband, and I were awake at 6am and in the hospital by 8am to check-in.  If you’ve never been to the Scripps Hospital La Jolla, it’s glorious.  Every attention to detail and the efforts of the staff are meant to soothe and calm: beautiful artwork, a live piano player in the lobby, and compassionate staff.  It’s wonderful.  We were joined by a wonderful friend and fellow EndoSister, Brandy, to document the experience (these photographs will be shared at a later date…I’m so excited about what she is doing!)  I was rolled back for pre-op somewhere around 11:30 and wheeled back to the OR by noon.  My surgery took approximately four hours.  And here I was worried he wouldn’t find any Endometriosis…(I should know better…)  We arrived home around 7:00pm.  A very, very long day for my friends and loved ones.

Segment of pre0-op report "robotic assisted excision of endometriosis, lysis of adhesions, enterolysis, urethrolysis, cystoscopy, possible right and/or left ovarian cystectomy, bilateral salpingectomy"

The plan was to open me up and peek under the hood, so to speak.  If any Endometriosis was discovered, Dr. Kurtulus would excise it; any adhesions would be freed; the ovarian cysts that were seen in ultrasounds would be removed; my ureters would be examined and freed of any adhesions; he’d look inside my bladder for any Endo or evidence of Interstitial Cystitis; and he would (with my willing and educated permission) remove both of my Fallopian tubes.

What did he find?  Following is a page of my op report, in case you enjoy reading all of the medical terminology (like I do).  I’ll also further explain what I understand and share photographs below!

Portion of operative report (about 1 page worth of text)

In a nutshell?  I had:

  • I was laid on a table, strapped in, and tilted somewhat upside-down.  Then a tiny hole was punched in my belly, 3 liters of CO2 gas was pumped in and I was inflated, and the doc took a peek around.  Three additional ports were added (tiny incisions) so tools and the robotic arms (tiny!) could be inserted.  On with the discovery:
  • A cyst on my right ovary;
  • A cyst on my left ovary;
  • Endometriosis on my cul de sac, small intestine, near my sigmoid colon, and on my left ovary and fallopian tube;
  • My fallopian tubes were hideous, “angry”, inflamed, swollen;
  • Adhesions on/near my sigmoid colon, my bladder, my fallopian tubes;
  • My sigmoid colon was stuck to the left side of my pelvis;
  • My bladder was pinned to my uterus;
  • My left ureter was surgically detached to allow safe access to Endometriosis lesions on my left ovary, then reattached once all-clear;
  • And (hooray!!!) NO evidence of Endometriosis was found on my liver or diaphragm (discovered there in prior surgeries).

During my post-op meeting, Dr. Kurtulus let me know that this time my Endometriosis lesions were all either clear or red.  He said they were almost grape-like.  I’m so pleased that he is so skilled and thorough during these procedures!!  And grateful he knows what to look for!

Ready for photos of my insides?  I don’t know if you can click on the photos and make them full-size, so they’re also available on Google Drive.

The Fallopian Tubes

My Mum told me that when Dr. Kurtulus showed she and my husband the photographs after the procedure, he said my fallopian tubes were “angry” and swollen.  That description will stick with her for quite a while, especially when she saw the photographs.  I am so glad we had already discussed removing my fallopian tubes before my procedure; as he likely would have removed them due to their massive state.

I had a 3cm cyst on my right ovary, which he removed while saving my ovary.  Also,  a cyst and Endometriosis lesions on my left ovary, which he excised (still saving my left ovary).

Lisa's surgical photos of fallopian tubes and ovaries
The yellow circles are showing Endometriosis on my fallopian tubes

My husband and I don’t want children at our age, but it doesn’t make the medical sterility any easier to bear.  I have grieved and mourned and cried and sobbed.  I am feeling much better now (although sometimes it still hits hard) after talking about it with friends and family and I wanted to share some incredible words from a few friends that they shared to comfort me:

“You may no longer have fallopian tubes, but you got one of the biggest pair of brass balls I’ve seen.” ~Barbara Carrera

“It’s a good thing to have the diseased bits out of the way.  And now you don’t have to worry about condoms.  And it’s fun to imagine your ovaries as crazy, free-floating googley-eyes!  They’ve been unleashed!!  Fly my pretties!  Fly!!”  ~Sarah Mew

Thank you, ladies.  I needed those laughs. ❤

The cul de sac (aka Pouch of Douglas)

This is my third surgery and during both of my prior surgeries, I had Endometriosis in my cul de sac.  To quote both of my first two op reports, my cul de sac was “obliterated.” What the heck is a cul de sac?  It’s the little empty space between the back of the uterus and the rectum.  It’s usually very common for Endometriosis patients to have lesions in this area.  This time, most of my Endo was on the left side, rather than everywhere in that little pouch.  And, Dr. Kurtulus excised all that he saw.

Lisa's surgical photos of the pouch of douglas, Before and After excision surgery

I’m flabbergasted at the difference!!! But, here are more photos of what my cul de sac looked like before I was all tidied up:

Additional surgical photographs of the pouch of douglas
Again, circles indicate Endometriosis lesions that I’m aware of

The Small Bowel

Two lesions were discovered on my bowel.  Dr. Kurtulus brought in a colo-rectal surgeon to look at the lesions to determine if they could be removed superficially or if something greater would be required.  The colo-rectal surgeon confirmed the spots looked like Endometriosis, but I would require a resection of that bit of small intestine.  It’s close to my appendix, on the right side.  So, it’s still in there, but I did already have a consult with that colo-rectal surgeon on August 8th.  My surgery date for the resection is pending and may take place by the end of this year!

Lisa's surgical photographs depicting Endometriosis on the bowels

The Bladder and Uterus

When I saw the photographs of my bladder being pinned to my uterus and held in place by a literal web of adhesions, I was amazed!  AMAZED!  I’d been having pain often when I peed and wonder if it was related to anything-Endo.  So Dr. Kurtulus freed my bladder (he’s my hero!).  He also looked extensively at the inside and outside of my bladder and found no evidence of Endometriosis or Interstitial Cystitis (aka IC).

Lisa's surgical photographs of adhesions on the bladder

The Cost of it All!

As usual, I LOVE to share what this type of surgery costs.  And, to date, this was the most expensive for my insurance company!  I paid a $500 co-pay to the hospital and my insurance covered a whopping $121,669.50!  Holy moly!!!  I’m still waiting to see if the colo-rectal surgeon will submit a separate bill for his time, as it wasn’t itemized on my Estimate of Benefits form.  Other than that, there shouldn’t be any sneak attack bills…I hope.  If you’re curious what my first and second surgeries cost, I’ve blogged about that, too!

Future Plans

I had my post-op appointment with Dr. Kurtulus on August 6th.  He spent some time with me going through the details, labeling the photographs, and talking about our future plans.  Did we pick curtains or china patterns? No.  We covered prospective treatments!  I’ll see him again for an 8-week follow-up in mid-September.

He brought up birth control and remembered I don’t want to take it as I feel it truly makes me a different person.  Then he mentioned Lupron Depot and Orilissa, but acknowledged (before I could say anything), that he knew I didn’t want to take those.  So, he wonderfully respected my opinions and desires; didn’t push anything.  Didn’t make me feel like I was a “hostile patient” or making poor choices.  And he supports my desire to strive toward an anti-inflammatory diet, keep a positive attitude, and pursue the bowel resection surgery as soon as I am able.

The Recovery Process

I fully intend to fully blog about my 2-week recovery and share my notes soon.  But I wanted to also mention it briefly here.  It wasn’t easy at times, but mostly it wasn’t hard.

My pre-op Endometriosis pain is 99% gone!  Just a little bit of “ugh” near the lower-right edge of my abdomen…and I may either just be healing or it’s the last bit of Endo clinging to my bowel waving at me.  I was even on my period! And it was so pain-free that it was a Sneak Attack period and caught me by surprise (the poor bed sheets).

The first week was a whole lot of paying attention to my body, small little walks, a mostly-liquid diet, lots of lounging on the couch-bed and watching Netflix.  There was the expected post-op pain the first day, a vomit on Day One (whoever wants to do that so soon after abdominal surgery?), sleepless nights, and difficulties getting comfortable.  And those first few days of hardly any sleep wasn’t easy on my husband or mother, who had to help me get in and out of bed multiple times throughout the night.

The second week I felt far more capable, although I didn’t do much of anything other rest and be lazy.  And I returned to work on August 6th.

I had very little shoulder pain related to the CO2 gas and I blame that on my surgical team’s skill in deflating me as much as possible and getting out as much gas as they could!  I did have a few episodes of that pain, but nothing in comparison to my first surgery.

It took three days to poop.  The discomfort was so great that I opted for an enema.  That is a tale in and of itself; one you shall never read about!!

My body is still healing: sitting too long causes discomfort; stairs are from the Devil; and  I don’t allow myself to squeeze out a poo – if I have to do more than just a gentle push, it’s not time yet.  No straining.  No lifting.  No pushing. No pulling.  BUT I have been cleared to go swimming in a pool (no lakes or oceans)…and we can have sex! We were recently brave enough to give it a go and I’m happy to report there was no pain or discomfort!

The last of my steri-strips were removed at my August 6, 2018, post-op appointment and they’re healing well.

BEFORE I GO…

I want to thank Dr. Kurtulus and his staff for their excellent care, the incredible nurses and other surgical team members at Scripps Hospital La Jolla, Brandy for her amazing photographs and the project she is working on, my Mum for driving out (yet again) to be with me for surgery and during a hardest days of my recovery, my husband for all that he’s endured with me, Erin for taking care of me for a few days, Rosie for spending time with me during my recovery, Laura & Chris & Carrie for their wonderful company to celebrate my health, Zeiddy for constantly checking in on me, my employers and co-workers for the beautiful flowers, and all of my EndoSisters, friends, and family who also threw me well-wishes and love.

This has been an amazing experience.

Be well. All of you.

(Updated March 27, 2019)

~ 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: Devon

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Devon was 25 when she was diagnosed with Endometriosis.  She lives in Yorkshire, UK.  Now a year after her diagnosis, she tells her story…

Devon’s Journey:   Honestly, I couldn’t tell you if my journey started at 14 or 24. Many women have a long and traumatic timeline of events, knowing something was wrong and battling for an answer. Me? I had a life of this or that bothering me, visiting the GP, being told I’m normal or a hypochondriac (dependent on the GP I saw that day). I am the sort of person who somehow gets through life but no one, not even myself, really understands how I’m managing it so I never really pieced together that various symptoms may be linked. I just carried on and when something anomalous occurred (severe heavy bleeding out of nowhere, the kind of tiredness I just couldn’t shake, pain that just wouldn’t go). I’d sort of absent-mindedly visit my Dr, apologise for taking up their time and take whatever they said as gospel, fully trusting that they would know if something was wrong.

So it was that two years ago I popped into my GP’s office: “I’m sorry for visiting but I have a pain in the right hand side of my stomach. It’s been there for a few weeks and it’s getting worse. At first I thought maybe I just needed a poo…but I’ve pooed since then…” The Dr felt my tummy, tested me for pregnancy and sent me straight to hospital where a bed was waiting with advice that I probably had appendicitis. 3 days, 3 blood tests, 3 further pregnancy tests and an Internal Ultrasound later I was in Theater about to have an 6cm Ovarian Cyst removed. I woke up an hour or so later and was cheerfully informed by the surgeon that the Cyst was in fact bigger than expected at 8.5cm but he had removed it and didn’t spot anything such as Endometriosis whilst inside.

That is why I don’t know if my journey started 2 years ago or 12.

2 years ago a surgeon didn’t see any Endometriosis yet now I am armed with a diagnosis and extensive knowledge of the condition, I know that for years I showed signs, subtle signs, but signs. I spent my 15th Birthday in Hospital with unexplained stomach pain that was eventually dismissed as “probably an infection.” I remember periods always being heavy, very heavy and I remember them always hurting. At 16 I remember them being so bad one month I struggled to get out of bed. My boyfriend at the time wanted to go somewhere so I manned up and we went to Costa, I ordered my favourite drink, a hot chocolate – I tried to ignore my cramps and sip my drink but felt too nauseous through pain, eventually I had to admit defeat and beg to go home.

This level of period pain was fairly normal but it seemed to ease around the time I went onto the implant for contraception at 16/17 – I never put two and two together. From there I just continued as I was, my periods were heavy and long but the pain was okay, it wasn’t so bad as I couldn’t get out of bed anymore, so I figured it was all okay.

At 19 I had started a new relationship and was noticing Intercourse was painful. I visited my GP and then a specialist, I had a number of tests, swabs and internal exams carried out until I was finally sent away with: “Just try to relax more during intercourse” Excellent advice – why on Earth hadn’t I thought of that before?!

A year later I had the Mother of all periods – I don’t know why that month my womb decided to suddenly put her all into the “spring clean” but man I got a shock. So off I went to my GP, still a little traumatized that last time I went I had effectively been told not to be so frigid by a Dr and still at an age I was grossed out talking periods and stuff. I will never forget what this GP told me: “Some women have heavy periods, some don’t. This is just your lot I’m afraid, it’s certainly heavier than most but that is just your normal” At this point I had bled through tampons and pads within the space of an hour at a time, I felt dizzy and I was in pain, I had really thought this was abnormal but the GP delivered the statement so bluntly, I felt stupid for visiting.

From that day on, whenever asked “And do you have heavy periods?” I would reply “Oh, kind of, but I know that’s sometimes just normal, it’s normal for me”. From that appointment I kind of just coped – I had felt so stupid and embarrassed in her office I never wanted to go back. So I just battled on with my 10-14 day heavy and irregular periods and the ensuing pain. I had my implant replaced when needed and that was that – until my Cyst 2 years ago.

Following the surgery to remove my Cyst I had my implant removed, I wanted a break from the hormones I had been on for around 8 years. In the months following it’s removal I was a frequent visitor in A&E, unable to manage the pain of ovulating and menstruating, both of which had suddenly started intensifying. I saw a Gynae and was placed on a list for investigatory Laparoscopic surgery, the date of this surgery was moved forwards as I became less and less able to manage the pain.  In May 2017 I had a Laparoscopy in which they found and removed Endometriosis whilst inserting a Marina Coil to treat and prevent it.

To this date I am not entirely sure where it was found or how much, all I know is that they only had 45 mins free to carry out the surgery – so they treated what they saw and no more. Laparoscopy’s should provide roughly 1-2 years of relief, I received 4 weeks before the familiar aches and pains started again. One year on and I am no better off than I was before the surgery. Currently I am awaiting a referral to a new specialist, I am doing my best and learning to live as a chronic pain sufferer.

Most of all, I am educating myself.

Throughout my journey it has felt like The Blind leading The Blind, Dr’s know so little about the condition, it is hard to have faith in them when they have so little confidence in what they are advising. They don’t always spot the clear indications, the textbook symptoms and then once you are diagnosed, they know there is no easy answer, no magic pill. So yeah, that’s pretty much my story. There is so much more to it than a Timeline of events but I have tried to keep it as brief as possible whilst including all the important bits… I hope today is a good day for anybody reading!

Words of Advice: Be your own advocate – you have to go home and live your life. Push for a diagnosis, do research, ask your Dr any questions you have, find the treatment plans YOU want to explore. Seek support from the Endo community, find ladies to talk to for advice or just comfort. You will feel alone and overwhelmed at times but so many women understand. Mostly, be kind to yourself. Accept your limits, with them, remind yourself this is not a choice you made but an unfortunate part of your life. You can still choose how you live it.

If you would like to e-mail Devon, you can do so here and you can follow her blog.

I want to send a special Thank You out to Devon for being brave enough to share her journey with us today!  While reading this, I went through a gambit of emotions: I related to a lot of what you were saying, then I was furious at the dismissal by your physicians, then I was elated at your strength, then sad that your pain has returned.  Your story captures such a large gambit of what we endure daily.  Thank you.    ❤ Yours, Lisa.

downloadAnd if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.