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.
At 27 years old, Melissa received her Endometriosis diagnosis. As a nurse, Endometriosis was briefly covered in her study curriculum, but she was still shocked and had so much to learn. Two years later, she is thriving with an educational blog about the disease and shares her story with us today:
Melissa’s JOURNEY:
“I think you have endometriosis.” These words came from an initial visit with my new Ob-Gyn after seeking out some help with conceiving.
At that point my husband and I had been trying to conceive for over a year and had no luck. Something inside me always knew I would have trouble becoming a mom, but the reality of it had finally hit and I knew we needed to see someone about it . . . but I did not expect this.
Endometriosis. I had heard the word before. Mainly on commercials. There is the chance that it was reviewed during my Women’s Health course in Nursing School. But if it was, the topic was brief and I don’t remember it; proving that there is not enough emphasis on endometriosis education in healthcare programs. Going in for infertility issues, but coming out with education of endometriosis was mind blowing, to say the least. Even as my doctor was asking all of the questions about my HEAVY periods, mood swings, chronic pelvic pain, etc, I still didn’t think any of it was abnormal. Like so many other women, I was taught by family and healthcare professionals that my period pain was normal.
Of course, after that visit, I went home and started researching. I was met with disbelief. Fifteen years had gone by since my very first symptom (severely painful periods), and I was just now learning about this? How was it possible that I was a nurse who couldn’t even see what I might have? I went on to find out that endometriosis is not well understood by the general population and that only few specialists actually know how to surgically remove it. I felt so thankful that the first doctor I saw was a specialist. How incredible that I was lucky enough to only visit one doctor and have an answer, while so many women go through several doctors before finding an answer.
So, I went through with the surgical treatment plan my doctor talked to me about and scheduled surgery for November 8, 2017. After that, I stopped doing research. There was no need, I had my answer and my doctor was going to fix my pain and help my infertility problem. Right? I was poorly mistaken.
Although the surgery did help confirm that I have endometriosis, it made my symptoms almost 10 times worse! Over the course of 2018, I went from being able to hold a full-time job with the usual painful period symptoms that I just pushed through during my cycle, to not being able to function multiple times throughout the month. I had to go part-time and called in frequently. I almost lost my job. My pain was no longer “just” during my period and it was no longer “just” mood swings, painful cramping, and occasional dizziness. My pain was now affecting every organ system in my body.
So, being the researcher that I am, I started looking for answers (because my doctor wasn’t really giving them to me). Low and behold, I found out that my surgeon was not a true endometriosis specialist. My surgery was not the gold standard in treatment. And my surgery was likely the cause of my downward spiral in health status. First off, I was mad at myself for not doing more research from the beginning. I was mad at myself for believing my doctor, something that I never thought that I would have to question. I mean, don’t get me wrong, I have been questioning the orders of doctors since day one as a nurse. It’s literally my job to critically think and question a doctor when they give me an order that might harm the patient . . . even if the doctor is an arrogant butt. So why didn’t I do that for myself? Was it because they had the word specialist behind their title? Honestly, I am not sure, but since the day I realized my situation was the result of misinformation, I made it my mission to share my story and help others advocate for themselves.
Today, I am sitting at home recovering from my second, and hopefully final surgery. I had laparoscopic excision with a doctor that is listed on Nancy’s Nook Facebook Education Page. But even so, I still vetted him myself with every question in the book. I fought my insurance to cover it with out-of-network benefits (at the minimum). And I won. Basically, I did my research and stood up for myself and the best possible care. Today, I am 4 weeks post-op, exactly. I am in pain, but excision recovery is long and hard. However, I can honestly tell that my chronic symptoms have been addressed. Of course, only time will tell, but I have faith in my recovery and the surgical skills of my expert excision specialist.
WORDS OF ADVICE:
My best advice to those of you on your journey to pain relief and symptom control (since there is no cure), is to do your research! Stand up for yourself. Don’t let a doctor diminish your symptoms or make you believe that it is all in your head. And be ready to fight your insurance when you do finally get to your excision specialist. The journey is hard, but I promise you, it is worth it. Because at the end of the day, you can go to sleep knowing that you did everything you could to get the best possible care available.
The Last Word:
For those endo warriors who do not have access to the excision surgery, do not lose hope. There is still so much you can do to help your symptoms. Western Medicine is not the only answer to endometriosis. In fact, most of the relief I felt before surgery, was from dietary and lifestyle changes. Pelvic floor physical therapy is great start as well. At the end of the day, education and research are still key!
If you’d like to reach out to Melissa, you can email her or follow her blog.
I want to send a special Thank You out to Melissa for being brave enough to share her personal story. You and I had surgery right around the same time this year and I hope your recovery continues to go smoothly and that you remain symptom-free. Thank you for all that you do for the Endometriosis community. And for sharing your story and some incredible words of wisdom!!!
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.
Diagnosed at 32 years old, Chenille shares her Endometriosis journey with us today, four years later. She’s had a total of seven surgeries for Endometriosis, including a hysterectomy and recurrent Endometriosis. And she has recently started seeing an immunologist. Hopefully this new course of treatment leads to long-lasting relief! Chenilles is sharing her story in the hopes that she can talk to others that have seen a similar journey of aggressive recurrent endometriosis.
Chenille’s JOURNEY:
I have had a long, long journey that seems like it will never come to an end. When I was first diagnosed with stage 4 endo I was experiencing very painful, heavy menstrual cycles. Within 2 years and after 2 surgeries I had a complete hysterectomy.
I thought my battle was over. Boy was I wrong.
Not only did the endo return but it came with a vengeance. I had 4 surgeries in one year to excise it from my body. My surgeon even removed as many lymph nodes from my pelvis as he could thinking it could be embedded in them. It didn’t help.
I went to see a pain management doctor at the request of a surgeon who performed one of my surgeries in Boston. I did and was also diagnosed with Small Fiber Neuropathy. I tried numerous medications, none of which worked and only made me sick. I did 1 month of lidocaine infusions which only helped my developing nerve pain and not the relentless pain in my pelvis. I am not taking any hormone replacement therapy, but I do take 5mg of Letrozole daily. I have been on it for almost seven months.
I just had my 7th surgery in November of 2019. Unfortunately the surgeon who has done most of my surgeries relocated to California so I had to fly out there because no one locally would help me.
After my last surgery I had 2 wonderful months of no pelvic pain. But just like always it started to come back and I am in the same painful boat again. I am taking medical marijuana now, however it does minimal for my pelvic pain. It does great for my increasing nerve pain. I do not want to be on a narcotic pain killer. That is my last option.
So where does that leave me? I am at a loss. I do not know where to turn.
My surgeon believes that for what ever reason my tissue lining in my pelvis and where my reproductive organs used to be is just spontaneously growing the endo. He says my case is very difficult and rare. But that leaves me still in pain and not knowing where to turn. I tried reaching out to an Oncologist but he wouldn’t see me because I don’t have cancer. I would not normally post this much personal info but I need help.
I want to know if there are other cases like me and if so what they did, or who helped them. I am willing to do radical treatments in the hopes of leading a normal life. I just can’t keep having surgery forever. I am only 36 years old. I have a wonderful husband who is beyond supportive but this has affected our relationship too. My 3 young kids don’t understand why mom never feels good. I can’t run and play with them like I want to, I hurt too bad.
I hope that by sharing this someone will help, in any capacity.
WORDS OF ADVICE:
You As hard as it is to do, stay in the fight.
If you’d like to reach out to Chenille, you can email her.
I want to send a special Thank You out to Chenille for being brave enough to share her personal story. May you find the advice and help you so desperately deserve. ❤ I’ll send ya a personal email with my thoughts.
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.
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
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.
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.
Living in Germany, N. (who shall remain anonymous) shares her Endo journey with the world today to try to help others feel not alone as well as normalize the symptoms. She was diagnosed when she was 23 years old and shares her story with us four years later.
N.’s Journey:
Hi, I’m from India. I started having painful cramps when I was 18 years old. It was so painful that I had to take pain killers. Then after few years, I used to get cramps before and after periods too. I used to have irritable bowel syndrome during periods too.
My father used to tell me to go to a gynaecologist but I used to think that it’s “normal”. I tried all kinds of home remedies but nothing worked. Every month, the pain was increasing. I was so done with all this that I told my mom that “I need to go to a gynaecologist, I need answers. It might be normal but I need this to be told by a gyanecologist”. My mother was still skeptical about going to a gynaecologist because she felt that they might give unnecessary hormonal medications.
Anyway, I was lucky that my first gynaecologist suspected endometriosis and told me to get ultrasound done and then she confirmed it. I was happy that finally I have my answers but I was lost. Later, I took dienogest for 1 year and then for 4 months I took Lupron injections. There was very less reduction in the size of cysts. My gyne told that I need to get my laparoscopy done which will happen in next 6 months.
In India, this is something which no one talks about and I wanted to normalize it and hence started this account.
Words of Advice:
My only advice would be that stay strong and be positive. You’re more than endometriosis !!
I want to send a special Thank You out to N.for being brave enough to share her personal story, struggle, and victories with us today. And all of us wish you the best of luck with your upcoming surgery! Please keep us posted on the results and your recovery.
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.
Happy Friday! I hope you’re doing well. Physically and mentally.
Today’s quote is about knowing your own body, your limits, your aches and pains, your abilities and disabilities. And honoring all of it.
Don’t do more than you’re capable. Take as many breaks as you need. Don’t be afraid or ashamed to say “no” to an invitation or task if it’s too much.
“Those who connect more frequently with their needs and are in constant conversation with their own beings, they can establish a parameter of what kind of workout and effort must be applied, of what amount of energy disposed and to be utilized, it will serve many times as a thermometer for those who listen to their bodies needs and feel what the internal thermostat is saying.” ~Ana Claudia Antunes
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.
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
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.
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.
Adhesions
More Adhesions
Endo, Inflammatory Fluid, and Ovary
Endo lesions
Inflammatory Fluid
Bowels & Pelvis
Sigmoid colon
Inside of bladder
All cleaned up!
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.
How have all of you been dealing and coping and managing with the state of our world?
I hope that you are all safe and well. My heart breaks for it all: the brutality, the death, the riots, the years of abuse.
My heart warms when protests remain peaceful and spread awareness, education, and understanding.
Policies are beginning to change in various cities and states. It’s too little too late, but I am glad that change is happening.
May we all continue to live, learn, and grow together
So, today’s quote:
“I am not a skin color. I contain all of humanity in my heart and my mind, my flesh, my blood and my bones, and I am proud of that fact. You should be, too.” ~ Laurence Overmire
Love and support one another. Regardless of the tone of flesh.
