July Pain Journal

I absolutely cannot believe it’s August already. This year has flown by. And what a weird year, indeed.

So here’s my July pain, symptom, and diet tracker.

I’ve had A LOT less pain in July. And also skipped my period, which may explain that (plus the benefits of my excision surgery). But when I did have pain, it was on both the lower right side and lower left side of my lower abdomen (pain ranged from 2-8 out of 10). I also had some lower abdomen pain, like uterine cramping for a few days (1-3 out of 10) with mirrored lower back pain. And I went through the emotional gambit of a period, even though I was blood-less.

I still what what I call “Shifty Poo Pain” from time to time, which is that glass-guts feeling that makes it way through the middle of my guts and especially prevalent on the left side of my guts before I poo. Once I have shifty-poo pain, I usually poop within 20 minutes. Glass-Guts shifty pre-poo pain ranged from a 3-9 out of 10.

And the act of dropping a deuce itself? Now that depends. My graphs have evolved to better help me process (haha there’s a pun in there somewhere) the information!

Of the 50 times I pooped in July, a third of it was diarrhea.

And of the regular poos, here’s my pain levels on a scale of 1 to 10 (10 being the WORST pain EVER). A not-so-whopping 22% of my poopin’ caused me 0 pain:

And of the Liquid Shits (aka MudButt aka Diarrhea), the majority (64%) remained painless:

Why did I alter my Poopy Pain charts? I have my consult on September 1st to discuss ongoing symptoms regarding the deep-infiltrating Endometriosis on my sigmoid colon and I wanted to arm myself with statistics. My own statistics. 🙂

All-in-all, I’m pleased with July’s outcome. I’m sad about the ongoing glass-guts feeling, but take heart in knowing I have an appointment in September to discuss it.

Pelvic Reset: A 6-week Course

Hi guys!

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.

Pain Journals: March 2020 – June 2020

Wow. It’s already July. I’m so far behind! Hahaha. Well, I wanted to catch up! So, here’s my pain journals for March through June of 2020!

One big shebang! Then I’ll get back on track of my monthly publishing!

March was ongoing pain on both the lower left and lower ride sides of my lower abs (a 4 out of 10), more intense on my period (6 out of 10). Sex and bowel movements were both with and without pain.

April also had the same ongoing pain, but the poopin’ hurt a lot less. The lower abdominal pain also intensified while I was on my period, reaching a 7 out of 10.

May’s pain journal looks terrifying. But it’s also my surgery-month. So, a lot of the pain and discomfort was post-op. But before surgery, lower abdominal pain was about a 4-6 out of 10. While on my period, that number soared to a 9 out of 10. On my period I also had mirrored lower back pain and painful urination. After surgery, I attribute most of the pain (including bowel pain) to healing from the procedure. Everything was angry.

June may still have been a lot of healing/recovery pain from surgery. Sex hurt. Poopin’ hurt (sometimes a 9 out of 10 glass-through-the-guts feeling), and a lot of lower abdominal pain. My period was a doozy and required two halves of Tramadol to control. June had a lot of pain with what I call “shifty poo pain”…pain that usually happens several minutes before I poo. Again, glass through guts. Almost always on the lower left side.

This has been a sit, wait, watch, and hope process. July’s pain journal has it’s own ups and downs (you’ll see at the end of this month), but I’m still watching, waiting, and hoping.

Below are the slideshows if you care to see my daily journals for each month.

And following are my poopy-graphs, if you’re a visual person and care to follow the pain with poopin’ journal (clicking on a month will download a PDF file). You’ll notice some painful poos in March and April, but an insane amount after the May 13th surgery. I would like to think it’s just healin’ guts…only time will tell.

March

April

May

June

Do you track your symptoms and share your trackers with your healthcare providers? If so, what do you use? Leave me a comment below! Let me know your system!

Review of the ReliefBand 2.0 for Nausea

Nicole Tamillo sportin’ her nausea ReliefBand with her cat, Meeko

Do you suffer from nausea? Did you know there’s a drug-free device that may help ease those symptoms? What??

First, an introduction: If you follow the Bloomin’ Uterus Instagram account, you’ve “met” Nicole Tamillo. She’s my friend, confidant, an Admin of our Facebook group, and fellow EndoWarrior. And she is far more tech savvy than I!

Anyway, one of Nicole’s major symptoms when she’s having an Endo-flare is nausea. Extreme nausea. I had heard about a wristband that may help with nausea, so I reached out to the company to see if it would help with Endo-induced nausea. The wonderful folks at ReliefBand offered to send her a complimentary ReliefBand Premier to try out for her Endo-nausea. HOW AMAZING!!! Nicole and I wanted to share her unbiased review, thoughts, results, and excitement with you:

Hello! My name is Nicole Tamillo. I am 27 years old. I was officially diagnosed with Endometriosis at the beginning of 2017 with laparoscopic surgery. Although I experience many different endometriosis symptoms, my two biggest complaints are pain and NAUSEA! My pain can range from uncomfortable to unbearable, but I can normally get through it with minimal complaining. Now nausea on the other hand…. nausea is the bane of my existence. I have self-diagnosed Emetophobia. What is that you ask? EXTREME fear of vomiting. I REPEAT EXTREME FEAR OF VOMITING. I am not talking about being uncomfortable with vomiting, I am talking about full-blown panic mode!! So when endometriosis causes nausea I can not function as a human being. All I can do is lay in the fetal position on my bathroom floor. And the anxiety that comes from nausea only increases my pain. It becomes a vicious vicious cycle. And I have tried so many different things to try and lessen the severity of my nausea. I have tried OTC medications, essential oils, teas, ginger chews, pressure point wristbands, and prescription medicines. But once my nausea has hit, there is no stopping it until it runs its course. That is until I tried the ReliefBand 2.0 (aka the ReliefBand Premier)! 

The ReliefBand 2.0 is a class II neuromodulation device that is cleared by the FDA for the treatment of nausea. 

How does it work?

When the device is in place on your wrist and turned on, gentle pulses stimulate the median nerve at the P6 location located on the underside of the wrist. This nerve is connected to the nerve in the brain that controls nausea. When stimulated using neuromodulation the brain signals the stomach to reduce nausea. The signals have a rebalancing effect normalizing nerve messages from the brain to the stomach reducing symptoms of nausea, retching, and vomiting.

What does it work for?

The device has been clinically tested to relieve nausea, retching and vomiting associated with motion sickness, morning sickness, chemotherapy, postoperative, and vertigo.  In addition, they’ve received FDA clearance this year to also treat nausea and vomiting associated with anxiety, physician diagnosed migraines, and hangovers!

How to use:

1. Finding the starting area (P6) on the wrist. You can use either wrist. It is approximately two fingers down from the wrist crease, between the two tendons. 

2. Clean the area and apply the provided conductive gel. You only need a thin layer about the size of a large coin.

3. Put the device on and adjust to line up the contact over the gel on the P6 location. Fasten device snugly.

4. Activate the device by pressing and holding the power on button. Adjust the intensity by using the up or down buttons. You should feel a slight “tingling” sensation in the palm or middle fingers. 

After using the Reliefband 2.0 for a few months, I can honestly say that it has helped me tremendously! I can’t imagine battling a major endometriosis flare-up without it. Although, it hasn’t been clinically proven to reduce nausea associated with endometriosis, I believe that it can make a big difference for women battling nausea related to endometriosis. 

Pros: 

  • It looks like any other fitness tracker. It has a sleek look and doesn’t stand out.
  • It is rechargeable.
  • Easily kept in your purse or bag for unexpected nausea episodes.
  • The intensity is adjustable
  • FDA Cleared
  • Drug-Free!
  • Latex Free
  • Fast Acting
  • No Side Effects

Cons:

  • The price point: $224.99. It is on the steep side.
  • When not used for a while it will die. So if you have a sudden spell of nausea and haven’t used it for a while, you will have to charge it before using it.

In my opinion, the pros definitely outweigh the cons! And the company provides a 30-day money-back guarantee. 

**

If nausea is something you suffer from, have you tried the ReliefBand? They have two different models at two different prices. If you’ve tried it, we’d love to hear your experience in the comments below. Did it work? Did it not work? What else helps with your nausea? Home remedies? Pharmaceuticals? Anything? Share!

I’d like to send a HUGE thank you to ReliefBand for their interest in helping a friend. And Nicole for opening up, making herself vulnerable, and sharing her symptoms and experience! I’m so glad it has helped you!!!

Feel Good Fridays

No quote today, dear Readers. Just an instruction.

Long-distance hug someone you love today. Let them know how much they mean to you. And consider yourself hugged.

Social distancing has been hard for me. I’m a hugger. A big one. So, I’m reaching out and smooshing you as you read this

Feel Good Fridays

Savage Race participants help other racers make it to the top of the Colossus during the Georgia Spring 2015 Savage Race in Dallas, Ga., April 18, 2015. The Colossus was a giant 43-foot wall and one of the hardest obstacles in the course. Adding to the difficulty of it being one of the final obstacles, runners had to sprint up the barrier after they’d already sledged through more than four miles in the mud, before grabbing a rope. They would then pull themselves up to the top of the fortification. The Savage Race is an Air Force Reserve sponsored obstacle course that challenges participants in more than 20 different trials over the course of five miles. (U.S. Air Force photo/Senior Airman Daniel Phelps)

Hello Readers and Friends!

How is it Friday again? So quickly? How has your week been? Your month? Your year? Do share in the comments below!

It’s been a whirlwind week for me. I started my period. It was intense for the first two days. Not uterine cramping; no that was nearly non-existent.

Instead, I had the intense, oh-so-familiar pain on the left side of my lower abdomen, the hot poker, the rebar shoved straight through my body. Intense (and I mean a 9 out of 10 intense) pain. The ol’ familiar pre-surgery pain. The kind of pain where I needed to pop half a Tramadol, and another the next day. *sigh*

For all I know, I’m still healing from surgery. But the darker side of me fears it’s the deep-infiltrating Endometriosis that remains on my sigmoid colon. And it’s put me into a funk. Lots of sadness, loathing, fear, hopelessness.

So I leaned on my support group. I’m the Admin. The founder. The creator of the group. And still it feels wonderful to be able to be so open and vulnerable to those whom I love and share these struggles with. I never feel judged or pitied or anything less than loved. And I’m grateful. Their words of support and encouragement pulled me a smidge out of my funk. Gave me something to hang onto while I was drowning in a sea of self-pity and mourning.

So, today’s quote is inspired by the endless struggle many of us share. And struggles that you have I may not be aware of. It’s not all about Endometriosis:

“Facing it, always facing it, that’s the way to get through. Face it.”

― Conrad Joseph

May we all have the courage to continue to push on. Forge ahead. FACE IT. Head on. And fueled with whatever drive we need. And we face it, together.

Much love to you,

Lisa

Feel Good Fridays

Masks designed by Sarah Soward. Want your own? Visit her store.

Another week has flown by.

I now have four friends who have tested positive for Covid-19.

One has had a hell of a time with it. She’s been to the ER several times, but luckily escaped being ventilated. It’s been 72 days since her positive test, and she was just in the ER again a few days ago with severe respiratory problems. It’s not been an easy experience for her.

Another two had an easier go with it, hardly any discomfort during the 23 days they had it. And they’re now free and clear.

Another friend just received her positive test results this morning. I can’t imagine her fear and questions.

In the beginning of this whole Covid thing, I admit I thought it was just the flu. That mentality didn’t last long at all as I watched the numbers skyrocket beyond the flu, the deaths stack up, and the ages of the infected spread far from “only the elderly” range. I hoped that if my friends and loved ones were infected, that none would succumb to it. I know the fatality rate is extremely low versus the recovery rate, but it’s still there. In San Diego County as of this morning, there have been 10,092 positive cases; 7,162 recoveries; and 331 deaths. Death is still a possibility, regardless of how slim.

I’m glad for the lockdown. Pleased for the mandated mask order in California. I miss working. I miss my friends. I feel like a mooch on EDD and Federal Aid. I miss hugs and touch. And not wondering “when was this table or chair last disinfected” when we go to a restaurant (I still insist on sitting at an outdoor patio well distanced from others).

I understand not everyone shares my view. And that’s okay.

I have several people I hold dear who won’t wear a mask, and that’s their choice. I can do nothing more than ask that they do. Do I love them less? Not at all. It’s their choice.

But me? I have a chronic illness that may (or may not) be caused due to a lesser-than-optimal immune system. As do countless others in our Endometriosis support group. We may be more susceptible to the virus.

I wear my mask for them. For the elderly at the grocery store. For that child over there. For friends and family who have asthma. For anyone who may be more susceptible to the harder effects of Covid due to underlying medical conditions that I may not be aware of.

I wear a mask to help keep others safe. And I wish everyone would do the same to keep me and others safe.

I miss my friends. My family. Human touch. But this is worth it to me.

Through all of this social isolation, we have had each other. Which leads me to today’s quote:

“Social distancing is staying away from people, not from your purpose.” ~Amit Kalantri

Hang in there guys. This, too, shall pass.

Love, Lisa

Share Your Story: Kimberli

Smiling woman dressed in yellow

After a long battle for answers, Kimberli was finally diagnosed with Endometriosis at 27 years old. Four years later, she’s forging ahead with the disease, spreading awareness, raising hopes and spirits, and supporting EndoWarriors everywhere!

Kimberli’S JOURNEY:  

I remember getting my period at age 11, one of the first out of my group of friends. Besides heavy bleeding, I didn’t think too much about anything being ‘wrong’. I was athletic, I played all sorts of sports, ate fairly healthy for a kid and was always playing outside or doing things with my friends. My immune system was pretty crappy though, I got sick a lot. Just your typical strep throat and flu type sicknesses. It wasn’t until high school, where I really started to notice some more symptoms. Bowel issues, severe headaches, horrible cramps.

My mom finally decided to take me to the GYNO at 15/16 years old. They told me I was fine, until they did an ultra sound and found some cysts. They quickly put me on birth control and set me on my way, telling me I would be fine once I started the pill. I am sure you can guess, I wasn’t fine. All through high school I found myself in and out of the ER due to strong pains in my stomach. Each time they assumed 1) I was pregnant or 2) It was my appendix, neither of the two ever being the case. So they would send me home with the diagnosis of “it’s just gas”. As frustrating as it was, I was beginning to think maybe nothing was wrong. I was in high school, maybe it was just stress. But the bowel issues progressed so my parents took me to the GI doctor where they decided to give me a colonoscopy. Only to find, nothing was wrong. And labeled my symptoms as IBS. I ended up in the ER a few more times during high school for pain but nothing ever did come out of it.

Throughout college my stomach issues got worse. My periods were heavy and cramps started to become more painful. But, I was still able to live a life, even if I was uncomfortable. I worked, I hung out with friends, I wore jeans, went dancing and ate what I want. Another severe pain did end up landing me back in the ER, but they still couldn’t figure out what it was. This time they sent me home saying it was just a kidney stone.

After that I gave up with doctors. I went to my yearly appointments, made sure that was ok and just went on with my life. No matter how hard it seemed or was. It wasn’t until 2016, it could have been even sooner than that, where I started to see some serious symptoms. That were concerning to me and starting to now interfere with my everyday life. Throwing up daily, nausea, constipation and diarrhea, unexplained weight gain, dizzy spells, shortness of breath, pain in my stomach, hips, legs and back. Non stop bleeding for months, painful sex, irritability, hot flashes. Just to name a few symptoms! I started with my primary care doctor who ran blood work, nothing much showed up besides a few deficiencies. They then sent me to the heart doctor, which showed nothing besides a leaky heart valve, which is normal I guess? Then I wen to the lung doctor, another GI doctor, numerous Gynecologists. Nobody could give me an answer as to what the heck was causing my symptoms.

I finally found a GYN I thought was going to be helpful, but instead, he sat there telling me in front of my husband that I needed therapy. Thay everything was all in my head and that even though I had just recently found out endometriosis ran in the family, there was NO way I had it.

I felt broken, I felt alone and I felt so lost. What else could I do?

I took a break for a little while and my husband helped me do some research. We found a GYN at one of the hospitals in the city and ended up making an appointment with him. I begged him to perform surgery to diagnose me. He had started with no, but when he saw how badly I needed this answer, he agreed. He warned me he was not a specialist and he could not do what an endo specialist would do during surgery. At that point, I did not care. The risks were worth it just for the answer I had been searching for.

After surgery on March 27th 2017, I remember waking up and hearing the words, we found endometriosis. The joy that ran through me was something you would never think you would feel waking up from surgery and hearing they found something. But those were the words I needed to confirm I wasn’t crazy. That there in fact was something going on inside of my body. And for the first few months, I felt good! But as I said, he was not a specialist. The surgery he performed was ablation and that is the worst possible surgery to have. I decided to do what I could to naturally heal. Change of diet, different exercises, CBD, all sorts of things I added to my life. And while they did all help me manage, I was getting to that point of discomfort and struggle again. So I started my hunt for an actual endometriosis specialist.

I finally did find one in August 2019 and we were able to come to an agreement for surgery. My surgery was this past December (2019). He had removed polyps, fibroids, endo around the uterer, endo around the bowels, a general surgeon removed hernias and my specialist was also to confirm adenomyosis and IC. It all made sense and explained a lot of what I was dealing with. After surgery besides new bowel issues, I felt good. I lost weight. I wasn’t experiencing bloat. And I just all around was feeling better. I am now about 5 months post op and just starting to feel back to my uncomfortable state. The bloat is back. The weight gain is back. The constant bleeding is back and it is frustrating.

But I am a fighter, that is what I do. I fight.

I will be speaking with him in a few weeks to see what we should do next. In the mean time I keep reminding myself how strong I am. How far I have come. And that this is just another rough patch I will get through. The best feeling is still knowing I am not crazy and that I have answers to everything I had been dealing with most of my life.

WORDS OF ADVICE:  

You are stronger than you could ever imagine. Keep fighting. Keep getting up every single day and showing endometriosis who is boss. Because you are so much more than this illnesses. Your pain does not define what you are capable of doing with your life. And always remember you are not in this alone. You have a whole community of amazingly strong women, right there fighting with you.

The Last Word:

KEEP FIGHTING. You are the only one who knows your body. If something does not feel right, keep on fighting until a doctor listens to you and gives you answers. You can always follow me on Instagram @life.with.kimberli and reach out anytime if you need to talk ❤ I am always here.

If you’d like to reach out to Kimberli, you can do so by email, Instagram, or follow her blog. I myself am the proud owner of her EndoWarrior bracelets, which are $4 a pop and can be found on Kimberli’s Etsy shop! It reminds me daily to keep fighting. Every day!

I want to send a special Thank You out to Kimberli for being brave enough to share her personal story, struggle, and victories with us today. We’re so glad that you were able to have surgery in December of last year, and wish you the best of luck for your upcoming appointments.

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

Yours, Lisa.

My 5th Endometriosis Excision Surgery

A drawing of a uterus, ovaries, and intestines.
Commissioned artwork by Sarah Soward

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.

A medical folder with "Surgery # 5" written on it

The Hospital

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.

The Surgery

Text from operation report summarized below

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).

Text from operation report summarized below

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.

Text from operation report summarized below

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.

Text from operation report summarized below

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.

Text from operation report summarized below

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.

Text from operation report summarized below

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.

Text from operation report summarized below

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.

Photographs

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.

Pathology Results

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?

The Bills

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)

The Plan

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 12, 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

The Recovery

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!

Surgical Photographs

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.

*Updated 7/4/20*