The Endometriosis Family Support Group hosted a free webinar on Wednesday, March 20, 2019, at 4:00pm (PST) featuring a discussion with Dr. Aykut Bayrak with LA IVF. He discussed Endometriosis diagnosis and treatment options. If interested, please e-mail Megan at megan@RMCcharity.org to register. If you cannot attend on March 20th, we will share the recording once we receive the link.
If you missed the live broadcast, here’s the recording!
Donatella and Tanya, who both have Endometriosis, agreed to share with us why they do what they do…
Tell us why you choose to raise money for Endometriosis awareness and research.
Tanya: It is all I can do so I give it my all.
Donatella: Tanya chooses to organize this fundraiser for her birthday every year with the help and support of The San Diego Sisters. It is important for Tanya as she manages living with endo. Five of the members of our Sister House in SD have endo, so it us important for us to support awareness and research and provide outreach to those in the community looking for understanding and a little joy. The venue we use, Shooters Cocktails, allowed our use for this fundraiser as one of the owner’s relatives has endo.
Can you tell us more about the Sisters of Perpetual Indulgence?
Donatella: The Sisters of Perpetual Indulgence started Easter weekend, 1979, in San Francisco. The Mission is to promulgate joy and expiate stigmatic guilt. The Sisters were the first group to recognize, inform about, and fundraise for HIV/AIDS. The Order has spread and Houses and Missions may be found worldwide.
Tanya: My favorite activists in SD. Bawdy, Funny, Informed, Helpful and without Shame!
This year a little something special occurred. The San Diego Sisters of Perpetual Indulgence granted Tanya a Sainthood! What’s that?
Donatella: Personally, I have wanted Tanya to be sainted for some time for her support and promotion of The Sisters. Being able to include her efforts in endo awareness and fundraising was a Joy. I think it is an important inclusion as it means representation for those in our community managing endometriosis. A Saint of The Sisters of Perpetual Indulgence is a member of the community who supports the work of the Sisters. In Tanya’s case, her endo outreach has enabled The Sisters in our outreach and fundraising efforts for endo. A Saint is a member of The Sisters who does not have voting privileges. They are community members who support the work, but do not have a calling to be a Sister or Guard.
Tanya: I am honored to help our Sisters help those in need in our community.
I know that Tanya serves special Endo-themed drinks every year at the FUNdraiser. What’s up with that?
Tanya: Warning! Bawdy and we make no apologies for that!
Donatella: LOL, Tanya and I wanted to create drinks that brought some joy, that the women could have a chuckle at. Also, the names make an impression on the men so in a humorous way we can get some points across about pain and discomfort. It is fun to hear the men get into it and yell, “I’ll have another Heavy Flow!”
Note from Bloomin’ Uterus: a portion of the proceeds from each of these drinks were donated to the Endometriosis Foundation of America. The drinks included: Heavy Flow (a bloody mary), Moist Vagina (a delicious shot), and Yeast Induction (a beer & a shot).
Anything else you’d like to share?
Tanya: Derek French is an acupuncturist here in Mission Valley (San Diego, CA area) who has been treating my early stages of Endo with herbs and weekly acupuncture for over a year and my painful periods are now a whisper of what they were. Derek has treated Endo patients in more advanced stages with great results his number is (619) 993-9297.
Donatella: I have found the End Endo event to be a wonderful way to let those suffering have an afternoon of fun and camaraderie with others who understand. It has worked to bring out women who have just been diagnosed, but do not know where to turn for information.
I cannot thank Tanya, Donatella, or the Sisters enough for doing this year after year. And Shooters for housing the fundraiser! AND a huge shout-out to the Ass Pocket Whiskey Fellas who were absolutely incredible (and will be joining us for our March walk)! Annnd than you Richard for the photographs and video!
If you missed the FUNdraiser this year, don’t fret: they’ll do it again NEXT YEAR!!! Thank you, Sisters! ❤ It’s always a blast and it’s for such a phenomenal cause.
All of these photos were taken by Richard T. Reyes (Saint Angel con Cuernos) and used with his express permission:
March 16, 2019; the screening will begin at 1:00p.m. UC San Diego Skaggs School of Pharmacy & Pharmaceutical Sciences; HSEC Auditorium; 9500 Gilman Drive; La Jolla, CA 92093. There will be free parking on the campus.
Endometriosis or “endo” is the most common, devastating disease that most people have never heard of. It affects 1 in 10 girls and women. That’s approximately 176,000,000 people on the planet.
Despite its prevalence, women see an average of 8 doctors for 10 years before diagnosis. During that time, many are forced to miss school, leave careers they love, abandon dreams of having children and watch their personal relationships suffer. They’re often told incorrectly by doctors that pregnancy & hysterectomy are cures and that pain is normal or in their heads. After diagnosis, they’re usually prescribed an array of drugs & undergo multiple, ineffective surgeries.
It’s time to break that cycle. It’s time for a new normal that doesn’t mean multiple doctors, drugs, surgeries, misdiagnoses and years of pain. The only film of its kind, Endo What? gives an accurate, up-to-date base of knowledge straight from the experts.
It’s a film to educate & put power where it belongs – in the hands of girls & women.
Where: UC San Diego Skaggs School of Pharmacy and Pharmaceutical Sciences; HSEC Auditorium; 9500 Gilman Drive; La Jolla, CA 92093. Follow the stairs outside the building down to the lower level.
Parking: There will be free parking available at the parking structure in the blue-highlighted area:
I’d like to extend a HUGE thank you to Dr. Sally Rafie and Sister Donatella Soul for all of their hard work in helping me bring this event to the San Diego community.
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
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.
One Sister has chosen not to take Lupron and talked about her battle with physicians to respect that decision.
The 2-hour Q&A session was paired down to a 5-minute investigative report. Jennifer did a wonderful job of fitting in a bit of our stories, as well as covering the side effects of Lupron, and the havoc it can cause.
If you’d like to watch the interview and read the more in-depth written report, please check out ABC 10 News’ page.
I’m grateful to Jennifer and Adam for reaching out to us and dedicating their afternoon to our interviews and for their weeks of investigative research. And I’m so proud of, and equally grateful to, our EndoWarriors who were able to join me that day: Melinda, Amanda, Brooklyn, and Linda – I love you. And am so pleased that you’re a part of my life.
Thank you for all that you do. Together we can achieve great things!
Before I get started, let me explain the image above. A talented artist by the name of Ivy Denton (@deathwindchimes) 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 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. 🙂
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.
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.
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. ❤
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:
Hospital Facility Bill
Insurance paid in full
Gyno Surgeon Bill
Insurance paid in full
Insurance Payment Pending
Colo-rectal Surgeon Bill
Insurance Payment Pending
Insurance paid in full
I paid in full
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 🙂
But here are the rest of my surgery photos I received at my post-op appointments (click on them to enlarge):
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.
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:
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.
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.
~ 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
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.
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.