Maggie Flood is a good friend of mine, and an EndoWarrior in our local San Diego group. She’s also a licensed Acupuncturist, certified Sexological Bodyworker and holistic pelvic care practitioner.
She’s put together and is hosting a six-week course on resetting your pelvic floor…and so much more. It will use Zoom for weekly meetings (which will be recorded if you can’t attend live), downloadable meditations, exercises, journaling homework, and a support community of fellow participants.
A course description:
“Pelvic Reset is a 6 week long assisted journey to guide you back to your body, uterus and root. As this course is open to all women and those with vulvas who wish to reconnect with themselves, it is especially useful for those coping with pelvic pain or female-bodied sexual dysfunction. Within this 6 week program you’ll learn the basics of embodiment, nervous system self-regulation, how to use pleasure for healing, lineage mapping your womb space, as well as new and ancient medicinal techniques to manage pain and heal from surgery or trauma. This course is designed to bring you into a new experience of your sexuality and relationship to your pelvic floor. A very special reset button, indeed.”
For more information, and to register, please check out her site. There’s a registration fee, but if you’re not happy with the program within 30 days, there’s a money back guarantee.
I’ve vowed to invest in my health this year, so I’ve already signed up. I just wanted to share in case this interested some of you.
What an incredible Journey leading up to my fifth surgery! Covid-19 postponed my surgery date by a week but, just in the nick of time, California’s governor lifted some lockdown restrictions that allowed for my surgery to move back to it’s original date of May 13, 2020. Today, June 10, 2020, marks one month since my surgery! Already! I am overjoyed with the results and the skilled hands of my surgeons.
Due to safety measures of C-19, my Mum wasn’t able to join me for this surgery and recovery. My husband was only able to drop me off at the curb of the hospital and I had to walk in alone. I didn’t see him again until he was picking me up to take me home. It was a surreal experience. No piano player to greet me in the lobby and two checkpoints to pass with Covid questions, but I knew I was in good hands and the time passed super-quickly.
As usual, the hospital staff were incredibly kind and compassionate. There were even a few familiar faces from prior surgeries. Scripps Memorial Hospital in La Jolla really does make me feel like a part of the family. And it made me feel far less alone while I waited.
The two-hour time window between check-in and surgery flew by. Forms, questions, answers, IVs, talks with surgeon, talks with the anesthesiologist, talks with OR nurses, talks with prep nurses. Before I knew it, it was time to roll on back.
One of my favorite questions to ask before each surgery: “What music will we listen to in the OR?” The option for me to choose is always given, but I default to the surgeon’s choice. This time (and always?): “Chill” station. Perfect. So the last thing I remember before taking that surgical nap: being wheeled into the OR, introduced to the rest of the OR staff, and after a few laughs and getting positioned on the operating table, a gentle whoosh of fluid through my veins (I can’t remember for the life of me what the anesthesioligst said before injecting the magic juice), and waking up in recovery.
I always wake up freezing cold. So the nurses were wonderful and turned up the heat on my air-blanket. I’ve GOT to get one of those for home. Ha! Then I fell back asleep, woke up later, and began the transition from naptime to going home.
The timeline? I arrived at the hospital at 5:15am, and was wheeled to the OR around 7:20am. Surgery began at 7:50am and the report was dictated immediately after at 9:47am. My surgeon called my husband at 10:20am to discuss what he found. The nurse called Jim around 11:47am to let him know I’d be ready to go home soon, and we made it home at 1:00pm.
Get on to the nitty-gritty already! I’ll include images of my official op report, followed by my (untrained) laymen explanation. All the learning!
Dr. Mel Kurtulus was my surgeon and Dr. Chandra Spring-Robinson was the Assistant Surgeon. Both are from San Diego Women’s Health and I cannot speak highly enough of them, both for my surgical care and for my regular gynecological needs and Endometriosis symptom management.
If you recall, I had a bowel surgery in 2018 and have rocked a 2-inch vertical scar beneath my belly button. In order to avoid any complications with scars, my surgeon decided to open a port and take a peek under the hood through an incision beneath my left rib cage rather than his usual route (through my belly button). So he took a quick look, realized that the belly button was free and clear of any adhesions, and opened up the rest of the ports: I have incisions on the right torso, my belly button, and two on my left torso.
Once properly situated, strapped in, and stirruped to the OR table, a foley catheter was placed inside my bladder. Through the belly button incision, they pumped my abdomen full of 3 liters of CO2 gas (this helps plump up the belly so they can see clearly inside).
The uterus appeared normal (please remember they suspect I have Adenomyosis, which is not visible as it hides within the uterine muscles).
My bladder was stuck to my uterus and pinned there by adhesions. In the photo, it looks very spider-webby.
The right ovary had a cyst which they assumed was a benign cyst.
The left ovary was pulled and stuck to the left side of my pelvic wall by adhesions. It also had a cyst present.
Not mentioned in the report, but is visible in the photographs and was discussed at my post-op meeting, was the yellow-tinged inflammatory fluid in my pelvis. It was at the bottom of my pelvis, just floating around as loose fluid. If you’ll recall a few months ago, my ultrasound technician found “loose fluid” in the area of my intestines. I was advised that this is “inflammatory fluid” and is normal to find in instances of leaking cysts, endometriosis, and adhesions. The fluid was removed during surgery.
Endometriosis lesions were found on the outside of my bladder, as well as the right round ligament, the cul-de-sac (also called the Pouch of Douglas), the left round ligament, the left paracolic gutter, and on the sigmoid colon. All of the lesions (except for the sigmoid colon) were excised and packaged up for pathology.
Due to the closeness of the left ureter to the endometriosis lesions near my left ovarian fossa (the little cavity of the pelvis where an ovary sits) and the stuck left ovary against the pelvic wall, my surgeon took great care to keep the left ureter safe from any surgical damage. The left ovary and its cyst were completely removed. We had previously agreed to remove my left ovary due to ongoing pain and it proving to be a problem-child (for lack of a better term) discovered during previous surgeries.
Now, back to the guts. On my distal sigmoid colon, he found a patch of Endometriosis, which he notes as “a deep penetrating cluster of endometriosis lesion.” In my post-op appointment, he classified it as a nodule of Endometriosis, and said it looked like Deep Infiltrating Endometriosis to him. Unfortunately, due to the high risks involved in cutting that deeply into the intestine without a full bowel prep and a colo-rectal surgeon on hand, he took note (and photographs) of its positioning and opted not to remove the nodule. More on this will be addressed in “The Plan” section below.
According to an April 2003 study published in Human Reproduction, Deep Infiltrating Endometriosis (also referred to as DIE) is described as “…a particular form of endometriosis that penetrates greater than 5mm under the peritoneal surface [citation omitted]. These lesions are considered very active and are strongly associated with pelvic pain symptoms [citation omitted].” Brigham and Women’s Hospital in Boston, Massachusetts says that DIE is a rare occurrence, showing up in only 1-5% of women who have Endometriosis.
He then removed the cyst on my right ovary and was able to save the ovary.
He thoroughly checked the rest of my pelvic cavity and found no further Endometriosis. He freed all adhesions and restored any wonky anatomy to its rightful place.
Before closing me up, a bag was placed inside my pelvic cavity, Lefty was tossed inside the pouch, and all was pulled out of my body. YAY! Good riddance! All of the CO2 gas was expelled from my pelvic cavity. And I mean ALL of it. I had ZERO occurence of post-laparoscopy shoulder pain due to any remaining CO2 gas. NONE. Dr. Kurtulus and I refer to it as the “Lisa Special,” where extra time and care is taken to make sure it’s all out. He does it for all of his patients and one day I hope he publishes the importance of taking extra time and effort to teach other surgeons. With all the gas gone, I was sealed up.
Also, per tradition, he took a look inside my bladder in search of any signs of Endometriosis or Interstitial Cystitis or anything else that should not be there. Clean as a whistle and beautifully pink.
Another surgery wrapped up. All involved are skilled at what they do. And this has been THE EASIEST recovery yet.
Since not everyone will want to look at my fascinating insides, I’ve embedded the surgery photos at the bottom of this blog entry. Scroll down if you’re curious!
But here’s a one-month progression of my belly healing up after surgery (contains some close-ups of incisions). If you don’t want to watch it, just scroll down a little further to the next section. Although this slideshow only focuses on several days (the entire first week, then once a week after that), I actually do have pictures from every day while healing. Believe it or not, they do help me when I forget if the bandaid lasted that long, or if that incision oozed, or if “this” looks normal. I go back to prior surgery photos often. And I recommend it for your personal notes.
The pathologist, Dr. Kurt Mathews, found that all of the lesions were Endometriosis. Dr. Mathews also identified the right ovarian cyst as a benign cyst and the left ovarian ovary as a hemorrhagic corpus luteal cyst: both cysts were normal; neither was an an Endometrioma. Which is great news to me. Maybe my body will behave, eh?
As of June 29, 2020, I am still waiting to receive most of the insurance Estimate of Benefits/ itemization and confirmed payments:
The hospital: $89,775.18
This includes the OR and pathology lab fees, medications, supplies, and equipment
The surgeon: $5,373.00
The assistant surgeon: $1,368.00
The anesthesiologist: Pending
The pathologist: $671.26
This is payment to the pathologist for the tissue examination.
My co-pay: $500
TOTAL: $97,687.44 (pending bills still need to be added as of 6/10/20)
My post-op went very well and all of my questions and concerns were addressed. I have a follow-up consultation on September 1, 2020. At that future visit, we will discuss any remaining symptoms of pain or discomfort. As of today (June 10, 2020), I’ve had no recurrent pre-op symptoms. Any discomfort or pain that I am having is due to the healing process of surgery.
We will monitor my post-op bowel pain. When I poop I once more have the feeling of glass shards running through my guts, which wasn’t present before surgery. Most likely, the intestines are still healing and adjusting from the laparoscopy. I was told that this generally fades a few weeks to months after surgery.
Dr. Kurtulus had already had a private conversation with my colo-rectal surgeon about the Endometriosis nodule on my sigmoid colon. If I do decide to go in for another surgery to have that nodule removed, it will likely be very similar to my 2018 bowel resection. Only the small portion where the lesion is embedded would need to be removed. I’ve forwarded the surgery photos and op report to my colo-rectal surgeon, Dr. Matthew Schultzel, for review and discussion. If after the 3-month follow-up I have had any ongoing or new pain in that area, I will have to decide then what to do.
But the plan?
Wait and see. If any symptoms become unbearable, go in for surgery. Hopefully it never happens. But I am struggling with the mental aspects of accepting that a deep-infiltrating nodule of Endometriosis remains inside my body and is just lying in wait.
Continue to maintain (and better) my diet, lifestyle, and exercise.
I will also continue to daily track my diet, symptoms, and any needed pain medication use. And I will bring summaries of those journals to Dr. Kurtulus in September.
But the biggest part of the plan? Remain positive during all of this.
Comparison to Past Surgeries
Where was Endometriosis found throughout this whole journey? How much did the surgeries cost (even if covered by insurance)? I always like to go back and compare. And, unless otherwise noted, all lesions were excised:
June 30, 2014: 2 incisions; 2.5 cm Endometrioma on left ovary; 2cm hemorrhagic corpus luteum cyst on right ovary; Endometriosis lesions located on liver, diaphragm, between bladder and uterus, left ovary, cul-de-sac, and various locations throughout the pelvis; the uterus was adhered to the bladder; peritoneum adhered to the bladder and uterus; left ovary and fallopian tube obliterated and adhered to adnexa; cul-de-sac obliterated and covered in adhesions; and bowel was adhered to left side of pelvic wall. The liver and diaphragm Endometriosis was not removed. Total cost: approximately $71,000. Surgeon: Dr. Mel Kurtulus
September 21, 2016: 4 incisions; 2cm hemorrhagic corpus luteum cyst on right ovary; Endometriosis lesions located on diaphragm, sigmoid colon serosa, right ureter, left side of uterus, various locations throughout the pelvis; adhesions were found throughout the pelvic compartment; uterus was adhered to bowels in several areas; both ovaries and fallopian tubes were clustered and stuck together; right ovary was adhered to backside of uterus; uterus adhered to right side of pelvic wall; and extensive scar tissue on bowel and backside of uterus. The liver Endometriosis lesion had disappeared and the diaphragm Endometriosis was not removed. Total cost: $93,472. Surgeon: Dr. Mel Kurtulus
July 18, 2018: 4 incisions; 2cm hemorrhagic corpus luteum cyst on right ovary; Endometriosis lesions located in cul-de-sac, small intestine, near the sigmoid colon, left ovary, fallopian tubes; the tubes were inflamed and covered in disease and were both fallopian tubes were surgically removed; adhesions were found on and near the sigmoid colon, fallopian tubes, and bladder; the sigmoid colon was adhered to left pelvic wall and the bladder was stuck to my uterus. The diaphragm Endometriosis had disappeared. The small intestine Endometriosis was not removed. Total cost: $121,669.50. Surgeon: Dr. Mel Kurtulus
November 26, 2018: 5 incisions; 2cm Endometrioma on left ovary; Endometriosis lesions located on terminal ileum (small/large intestine), cecum, appendix, cul-de-sac, both uterosacral ligaments, near the bladder, and on both ovaries; adhesions had formed on the left side of my pelvic wall, my left ovary was stuck to the left side of my pelvic wall, and my bladder was adhered to uterus; a portion of my small intestine, large intestine, cecum and appendix were all removed, totaling approximately 7 inches during the bowel resection portion of this tag-team surgery; microscopic Endometriosis was found on appendix and cecum, as well as large intestine. Total cost: $235,429.60. Surgeons: Dr. Matthew Schultzel and Dr. Mel Kurtulus
May 13, 2020: 4 incisions; 3cm hemorrhagic corpus luteum cyst on left ovary; 1.2cm benign cyst on right ovary; Endometriosis lesions were found on the outside of my bladder, right round ligament, the cul-de-sac, left round ligament, left paracolic gutter, and deeply-embedded on my sigmoid colon; my bladder was adhered to my uterus, the left ovary was adhered to the left pelvic wall; and my left ovary and adnexa were removed completely. The sigmoid colon Endometriosis nodule was not removed. Total cost: Pending. Surgeons: Dr. Mel Kurtulus and Dr. Chandra Spring-Robinson
Let me start by saying this has been the easiest recovery yet! In a future post, I’ll share my itemized recovery day-by-day journal (I write down EVERYTHING from the second I’m home to four weeks out). And my husband has offered to help so we can compare it to previous surgery recoveries…as well as identify factors that may have made a difference in this time. So, please stay tuned for that separate blog entry.
During the four-weeks following surgery, I had ZERO shoulder pain from CO2 gas (thanks to Dr. Kurtulus and the “Lisa Special”!). And I took ZERO opiates and only two NSAIDs! TWO! I’m so amazed!!! Every day was an experience and journey. So, please stay tuned for the day-by-day breakdown, triumphs, pitfalls, setbacks, and “Today I could do this” entries which I’ll publish as soon as I’ve transcribed it. If I typed those here, this blog would go on FOREVER (and it’s already sooo long)!
Update 7/4/20: it’s been nearly 8 weeks since surgery. I have VERY little surgery pain. If I do, it’s mostly discomfort of low levels. If I overdo things, the discomfort can become pain, but it fades quickly. I DO HOWEVER still have pain when I poop: gut-splitting pain. And I’m curious how my July period will be. June’s period had 2 days of intense pre-op pain on the lower left side. We’ll see!
As promised here are the surgery photographs! Please be aware that the scans are low quality; the Endo on the colon is MUCH more visible, almost a dark purple blotch on the hard printouts. If I get higher-quality scans, I’ll be sure to update these. You can click on them for a larger image.
Did you actually read all the way to the end? OMG. You’re amazing!! Not only is this blog meant as a tool to help others with their surgeries, recoveries, etc., but it’s absolutely a tool for myself: If I need to have another surgery, I can come back to these notes and refresh on what I may need or expect. So, thank you for enduring an incredibly lengthy blog entry!
And if you have your own upcoming surgery, I hope it provides long-lasting relief, that it is a easy recovery, and please feel free to reach out to me if you ever need anything.
A new study about Endometriosis is out regarding the modern treatment of the disease. This includes birth control, progestins/anti-progestins, GnRH agonists, aromatase inhibitors, danazol, NSAIDs, surgery, and alternative treatments. It identifies the pros and cons of each.
The study closes with this beautiful phrase:
“The pharmaceutical or surgical treatment require an individual approach and deliberated informed consent of the patient. Pharmacological treatment is only symptomatic, not cytoreductive, therefore, to remove endometriosis lesions, surgery should be performed.”
It’s uplifting to see a study bluntly state that medications only treat the symptoms, NOT the disease itself, and the Endo lesions need to be removed. AND that each case of Endometriosis must be reviewed on an individual level.
“Deliberated informed consent of the patient” means (to me) as having a fully-informed patient who is made well-aware of the pros and cons of each choice, the side effects, risks, and potential outcomes; as well as having performed their own research before agreeing to the treatment.
Even with excision, though, there’s always a possibly of recurrence or new growths. And not all physicians are skilled enough to recognize each lesion. Not to mention many surgeons still practice ablation (the burning away of the lesion, leaving rooted tissue to regrow).
Welcome to an EndoWarrior’s very frustrating pursuit for competent medical care.
I encourage you to read the study for yourself and share it.
I don’t know about you…but even after my surgeries and recoveries, sex can still be painful with deep vaginal penetration; mainly when my husband boinks up near my cervix.
Sometimes it’s enough to knock the wind out of my sails and we have to stop.
Why does it hurt? It could be related to Endometriosis or adhesions. But it’s more likely due to my abnormal anatomy: I have two cervix, side by side. Deep sex has always been painful to me; I only learned it was abnormal after my Endometriosis diagnosis! We’ve adjusted our sexual positions and found several that are doable without deep penetration…but…let’s be honest: I miss some of the many positions we can no longer do.
But there’s hope!
Have you heard of the Ohnut? It’s relatively new and was specifically made to help with that sort of deep-penetration pain. It’s like a sleeve/barrier that wraps around the penis (I can’t type that out without snickering….) and prevents total penetration. It’s customizable in length, too, if not 100% of the device is needed.
I received ours today! It retails for about $70, but we budgeted it into our finances and hope it’s worth every penny. I’m grateful my husband is willing to give this device a try; a lot of the online reviews from men were positive. Many said they couldn’t feel a difference or didn’t feel like they were being robbed of the experience. And we both look forward to trying it out (insert sheepish grin here).
Expect a review hopefully on the coming weeks. Coming? There’s a pun in there somewhere …
Free workshop on endometriosis and pelvic floor dysfunction – how do they relate and why should you include a pelvic floor PT in your team?
Saturday, June 22, 2019, from 2:15pm – 4:15pm at the Mission Valley Library’s Community Room; 2123 Fenton Parkway in San Diego, California.
At this workshop, Jandra Mueller, DPT, of Synchronicity Physical Therapy will be discussing the role that the physical therapy plays – or should be playing – in your care. Jandra will discuss what the pelvic floor is, its functions, as well as treatments that may also benefit women suffering from endometriosis such as painful intercourse, “interstitial cystitis,” irritable bowel syndrome “IBS,” and small intestinal bacterial overgrowth “SIBO,” as well as the importance and tools to regulate the central nervous system. Jandra would also like to answer any questions you all may have regarding pelvic floor physical therapy! She has been working with women with endometriosis for the past several years and has also been one of the many women to suffer from this disease, so she understands firsthand how frustrating this condition can be! Please come join us on June 22nd for this exciting event!
Seating is limited, so please reserve your spot today.
We here at Bloomin’ Uterus are VERY excited to be able to help bring this event to San Diego. Jandra is an incredible EndoWarrior and friend.
Free tickets are available on Eventbrite. You can also feel free to RSVP on Facebook, but please secure a seat via Eventbrite. We are limited to 100 seats. If you do not wish to register via Eventbrite or Facebook, please contact me and I’ll put your name on the list of attendees.
And to those that cannot attend, we will *try* to videotape it and share the link.
Before I get started, let me explain the image above. A talented artist by the name of Ivy Denton created it for me (they also created the EndoGuy and PoopChuteSnakie you’ll see below). They’re taking commissions if you’re interested in throwing ideas their way! “What is it,” you may be asking yourself. It’s a whimsical interpretation of my insides: a uterus with two cervix, no fallopian tubes (hence the band-aids and floating ovaries), and it’s accompanied by it’s new buddy: an intestine missing some pieces. I think it’s adorable! Thanks, Ivy!!
On with the good stuff! If you didn’t already know, back in July 2018 during an excision surgery Dr. Kurtulus discovered a pair of Endo lesions on my small intestine . He brought in a colo-rectal surgeon, Dr. Schultzel, to look at it and decide if we could remove it then. Unfortunately, it was deemed too deep and risky without a proper bowel prep and a future resection would take place.
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!
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 per contract
Endo Excision Surgeon Bill
Insurance paid per contract
Insurance paid per contract
Colo-rectal Surgeon Bill
Insurance paid per contract
Insurance paid per contract
Asst Surgeon: Excision Bill
Insurance paid per contract
Asst Surgeon: Colo-rectal Bill
Insurance paid per contract
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.
Well, here we are in 2019 and I’m starting my blog off talking about poop…Why? Because I’m SUPER excited to share with you how different my bowels (and pain levels) have been since my recent bowel resection and Endometriosis excision surgery.
If you weren’t aware, I underwent a bowel resection to remove deep-infiltrating Endometriosis from my small intestine.
Embrace this discovery with me! Here’s my pain journal summary for November of 2018:
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! And if you’d like more up-to-date info on my bowel movements and pain symptoms, I’ve started blogging about them on the first of every month.
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.
Some of you may be asking “What is Livia?” It’s been hyped in the news and social media since 2016 and has recently made a comeback in my Facebook newsfeed. Livia recently won the Gold for Women’s Wellbeing at the Edison Awards. Imagine a tiny device that you can wear around discreetly all day. It retails for roughly $150 on MyLivia’s webpage and Amazon and you can purchase additional gel pads to use for future cycles.
Some have compared the Livia to a TENS unit. TENS units can be large, bulky, cumbersome, and not to mention intimidating with all of the buttons, wires, and knobs. Sure, I can figure it out…but then I’d also have to lug that thing to work, out shopping, etc. The Livia is a small, discreet, and incredibly user-friendly medical device. It supposedly works by tricking the mind by keeping it busy with a little electric pulsing that deflects or confuses the pain signals going up to your brain…I had my doubts.
A study of 163 women who suffered from severely painful periods was conducted, and 80% of them reported that Livia either “helped to either significantly or completely eliminate their use of pain medications while menstruating.” There was a recent 2018 study conducted on the effectiveness of Livia to treat painful periods, and those results will hopefully be released by the end of the year.
As a side note regarding Endometriosis pain (which, as we know, can be far more severe than normal menstrual cramps), Livia’s manufacturer can’t recommend Livia for use in treating endometriosis until an independent clinical study among endometriosis patients is completed in 2019. However, dozens of endometriosis suffers have posted messages reviews on Amazon and other places saying that Livia is very effective in reducing or eliminating their endometriosis pain.
On June 17, 2018, I wrote Livia to inquire if I could connect with someone at the company to discuss their product and how it has helped women with Endometriosis. I also asked if they’d be able to provide me customer testimonials by women who suffer from Endometriosis. I explained who I was and that I suffer from Endometriosis and write a blog about the illness.
A day later, I had a response. After answering a few questions about my blog and my intentions, Livia offered to mail me a unit in exchange for my unbiased opinion and review.
I jumped at the chance!
It arrived from Israel on June 27, 2018. I took copious notes and wanted to share my experiences with you!
The Great Unboxing!
As of the writing of this blog (July 9, 2018), I used the Livia from June 28, 2018 through July 4, 2018. I expected to start my period the week of June 28, 2018. I experienced all sorts of cramping and PMS symptoms, but alas, my period never came (sometimes I skip a month). But, my pain was elevated enough where I believe the Livia got a good test run. And I look forward to testing it out on future painful days. I also had another excision surgery on July 18, 2018, so it will be a few months before I will be well enough to test the Livia again. But test I shall! Stay tuned!
I also learned that Livia is only intended to be used for menstrual cramps and lower back pain associated with menstrual cramps. Due to my Endometriosis and resulting scar tissue, I also experience pain on the lower edges of my pelvic region near my hip bones, and along the underside of my ribs. The Livia is not intended for use in those areas. In fact, any placement of the Livia gel pads near the thoracic region is strictly forbidden. And I asked about the use of Livia for neck or shoulder pain: again, please do not use the Livia for any other area of the body except menstrual cramps and menstrual-related lower back pain.
Okay, on with the show! Below is a summary of my experiences (unless you’d rather read my detailed notes).
June 28, 2018: It tickles. But you soon forget about the tickle and pretty much forget you’re wearing it. For me, my ideal setting was hitting the + Button twice. So, let’s call it Level Two. Anything beyond a pleasant tickle is too much, according to the user manual.
June 28, 2018: PMS cramping pain was a 4-5 out of 10. It dropped to a 1 out of 10 just 17 minutes later. Within an hour of turning it on, I had zeroPMS cramping. I turned off the unit, and my pain returned an hour and 15 minutes later.
June 28, 2018: PMS cramping pain was a 4 out of 10. Within 45 minutes (took some time to adjust the settings), the pain had reduced to zero! Sometimes it crept back up to a one but dropped back down quickly to zero. Turned off the device an hour after turning it on.
June 28, 2018: PMS cramping pain returned within an hour of turning off the Livia. It was a 4 out of 10, but within 15 minutes of wearing the Livia on Level 2, it had once more reduced my pain to a zero out of 10!! Turned off the device after an hour of having it on.
June 28, 2018: Pain returned within 10 minutes of shutting off the device. It was now a 5 out of 10. Turned it back on to Level 2 and within 20 minutes, pain reduced to zero…again! Kept it on for about an hour.
June 28, 2018: My biggest tip to pass on about the Livia? When you have to use the restroom, instead of unclipping the unit from your pants or dress or shirt, simply turn the device off and unplug the gel pads cable from the unit. Mind the dangling “tail” as you pee, then reattach it when you’re done.
June 29, 2018: PMS cramping returned at a 5 out of 10 and I reached for my trusty Livia, turning it on to Level 2. Within 15 minutes, the cramps subsided to a zero out of 10! It turned off the Livia five minutes later. While driving, my Livia pad felt a little squiggly on my skin, and I pulled over and looked down. It had peeled half-way off. Not off of my skin, but off of the flower pad. So I peeled it all the way off and stuck it back on, smooshing real hard. It remained on the rest of the day.
July 3, 2018: I didn’t have any cramps for the past few days, but they came back at a 6 out of 10. So I turned my Livia on to a Level 2 for 15 minutes and my cramps were reduced to a 1 out of 10.
July 4, 2018: Cramping was a 6 out of 10. I grabbed my Livia, slapped on my pads, and plugged it in, turning it up to Level 2. I couldn’t feel the usual buzzing-tickle on Level 2, so I bumped it up to Level 3. About 20 minutes later, my cramps were back down to a wonderful 1 out of 10.
All of the pain I’ve felt since July 4th has been in areas that I was recommended not to use my Livia: my lower pelvis near my hips, my under-ribs, and a weird spot near a cyst that I know exists.
I never tried the Livia on my lower back since that pain was been super manageable at a 1-2 out of 10. But, when that pain exceeds a 2 or 3, I’ll be sure to try it out.
I am the most skeptical person you’ll ever meet. Especially when it comes to products that are marketed specifically for conditions that a large population suffers from: like painful periods. But this device was truly incredible. I’m elated. And flabbergasted. And amazed. And excited.
But was it worth it? Of course, it was for me since I didn’t have to pay. But would it be worth it for $150? I’d like to say, “Yes.” At least for me. Livia offers a 120 Day Money Back Guarantee, although some online reviews mention that you have to pay a sometimes hefty international shipping charge to send it back to Israel. And there’s a 2-year warranty on the product when you purchase it, so if it breaks during that time, you’re covered!
It’s easy to use.
It recharges on any mini-USB charger.
And, for me, it worked like a charm!
Granted, I couldn’t give it the 100% Endometriosis-period test…but it did help with a lot of my PMS pain and cramping. And I also will be doing another full review after my surgery if my painful Endometriosis symptoms return. Again…stay tuned!
Would I recommend it? I’m gonna have to say Yes…but I will also highly recommend you keep your own notes and evaluate how well it works (or doesn’t) for you. And take advantage of that money back guarantee if it doesn’t. There is no shame in returning something.
what others thought:
A few of our blog readers have also started using the Livia unit with mixed results. Everyone’s bodies are different and, of course, not everyone will have the results that I did. So I wanted to share their experiences here:
4/24/19: A fellow EndoWarrior, Kitty, purchased a new Livia unit and calendared the date she had to return it in order to get her refund, if needed. Here’s her short report: My pain was not too bad this month, but uncomfortable enough that I had to take Advil. There are times when Advil doesn’t work. I used Livia a few days straight and a few hours at a time. I can no conclude that Livia or TENS does not work for me. Not even slightly. I am returning the device and I am glad that I am able to ship it back to Atlanta and not Israel.
If YOU would like to share your review of the Livia unit on our blog to help others make their own decisions to try it out, please contact me.
(Updated April 24, 2019)
Clinicaltrials.gov – The Effectiveness and Safety of LIVIA Transcutaneous Electrical Nerve Stimulation (TENS) in Women Suffering from Primary Dysmenorrhea.
HealthcareDive.com – (Press Release) Livia – Drug Free Solution for Menstrual Pain Now HAS FDA, CE, and Health Canada
~ 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
Recently, someone brought it to my attention that they’d heard that heating pads are bad for Endo. Now…I live with my heating pad literally attached to my body almost every first few days of my period. So, I was taken aback by the suggestion as I find the heat soothing. And I vowed to do some research on the theory that heat is bad for Endo…and, as usual, formulate my own opinion and share it with you.
Endometriosis News ran an article in August of 2017 highlighting the opinions of Melissa of EndoEmpowered and Aubree Deimler of Peace with Endo, and both discussed how heat may cause fascia to manipulate (or soften) and harden after it cools down once the heat is removed. Aubree tried the heat elimination process to see how she felt, and felt a difference with her pain. If you’d like to try, please follow her example. Melissa interviewed Chris Toal of Azolla Health, who shared a downloadable brochure on the theories behind heat and fascia. Not only does Toal discourage the use of heating pads, but also the use of hot showers or baths. Aubree directly linked back to Melissa’s article and interview.
What is fascia? It’s a thin, fibrous tissue made up mostly of collagen that covers and supports tissue, such as muscles or organs.
From what I gather, the underlying theory expressed in the views of Endometriosis News, Melissa, and Aubree of why heat is bad for Endometriosis pain is that the heat, for lack of a better term, softens or melts the fascia tissue. Once the heating pad is removed, the fascia rehardens and can make the pain worse. This may cause adhesions to shift, form, and harden. Aubree cites to Ida Rolf‘s theory regarding fascia and displacement with energy/heat/manipulation.
Visualize a brand new, unlit candle. Once lit, the wax begins to melt. Blow out the flame and the wax cools and rehardens, oftentimes in a new shape. Or think of making gelatin: the mixture is liquid while hot and solidifies once it’s in the fridge and cooled off.
The fascia-altering theory is the only argument I have been able to find against using heating pads if you have Endometriosis…so:
Let’s find some proof to all of this…because, like I said, sometimes I live on my heating pad.
Ida’s theory that fascia tissue degrades with manipulation or energy is frowned upon by some. It’s called the thixotropic effect, where the tissues degrade with heat or pressure, then reform upon settling. Paul Ingraham wrote about his opinions in Feb. of 2013 and again Jan. of 2018 on thixotropic effect on PainScience.com and opines that fascia is simply “too tough” to manipulate in such a manner and states that Ms. Rolf found her theory to be “nonsense” as well. Mr. Ingraham cited many studies and professionals to support his opinions. You’re welcome to read both pieces (linked above and in the Resources section below).
But what if it’s not nonsense? According to the Science of Slow Cooking (mmmmm…crock pot food…), collagen begins to break down and liquify into a gelatin at 160 degrees Fahrenheit. Now, I’m no expert on the human body versus a meat-animal, but…how hot do heating pads get?!?
A study published in Safety Brief in 2015 ran a few experiments on heating pad created by Kaz (Model HP-110). After running the heating pad for 120 minutes, it never exceeded 151 degrees Fahrenheit, uncovered.
Sunbeam offers a FAQ on their webpage about the temperature range of their heating pads: the low setting 110 degrees F and the high setting can get up to 160 degrees F.
Sew4Home conducted their own little science experiment with homemade microwaveable heating pads. They compared rice, corn, and flaxseed. After 30 seconds of heating, the rice was 140 degrees Fahrenheit, the corn was 158 degrees, and the flaxseed was 144 degrees. Five minutes later, each had cooled: 136 (rice), 142 (corn), and 142 (flaxseed).
Hot water bottles should never be filled with boiling water (water typically boils at 212 degrees Fahrenheit), due to leakage and safety concerns. Many manufacturers of hot water bottles suggest a nice, easy-to-touch temperature; not scalding.
So, I’m not sure that heating pads (electrical, microwaveable, or hot water bottles) will get hot enough to do any liquifying damage to facia. But, then again, I’m no expert. And several webpages promote the use of heating pads (sometimes combined with castor oil packs) to help with adhesion, Endometriosis, pelvic, or lower back pain.
So, then I was curious: why do heating pads make my pain feel better? Once more, I hit the internet. And, once more, ran into a lot of Mr. Paul Ingraham’s writings and voluminous cited resources, along with other webpages.
Heat may be very soothing, it increases blood circulation to the area, it may relax tense muscles, and a 2006 study found that internal heat receptors may actually block pain signals. So, once more, heat may be good for dealing with certain types of pain.
Again, I’m not a scientist and this is just my opinion after bouncing around the internet for several hours doing research and reading. My conclusion?
My heating pads make me feel better…and I will not stop using them. Am I knocking Endometriosis News, Melissa, Aubree, or Chris? Nope. Everyone is entitled to their opinion and I value a broad perspective on things. But, for me? I also value the comfort that a good ol’ heating pad delivers.
What about you? My advice? Do whatever makes you feel better. Hot, cold, or neither. It’s your body and you know it better than anyone.
(Updated March 27, 2019)
Earth Clinic (Dec. 2017): Natural Remedies for Abdominal Adhesions
EndoEmpowered (Nov. 2016): Stop Using Hot Water Bottles for Endo Pain
~ 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