Empowering Choices: Making Informed Decisions in Endometriosis Surgery
Mar 15, 2024
The Endometriosis Summit
What medical conference can you attend where doctors, patients, and allied health professionals gather in the same room? As a Physical Therapist, I've never witnessed such inclusivity until this event and it is POWERFUL!
This past weekend, I attended The Endometriosis Summit in Orlando, FL, hosted by Dr. Sallie Sorel, a Pelvic Physical Therapist and EndoWarrior and Dr. Andrea Vidali, an experienced Endometriosis Surgeon. This was my second year attending, and once again, it did not disappoint.
This summit is truly extraordinary. It is 3 days and broken down like this:
Day 1 - Surgery day
Day 2 - Patient Advocacy Day
Day 3 - Town Meeting Day (bringing it all together)
Over the three days, it covers a range of topics: from endometriosis surgery to fertility to the gut microbiome! This came with a range of emotions as well - I felt empowered, to empathetic, curious at times and frustrated at others, overall I felt inspired! The Endo Summit has now officially become my safe space—a place where I come to find answers and gain clarity from a community I trust.
This summit, continues to lay the foundation for transformative decisions, from choosing the right surgeon, determining the next steps in my fertility journey and reclaiming control over my health and well-being.
After this summit, It became abundantly clear that who performs your surgery matters just as much as the type of surgery you choose - a topic I'm eager to share with you today.
How I Ended Up Here
One year ago I was searching for answers and solutions. I had recently been diagnosed with endometriosis and the MRI revealed a 10 cm cyst (Endometrioma) on my left ovary. My gynecologist told me I needed to remove it immediately with surgery. I asked her what the surgery consisted of and and she told me she would just go in and cut the endometrioma off.
At this time I thought an endometrioma sat on top of the ovary, when in fact it is actually an extension of your ovary, it grows within the ovarian tissue. My gynecologist definitely made it sound like it was just sitting on top too.
Since fertility was always my primary concern, I asked if the surgery if this would damage my ovaries. She replied, "No not at all, I just burn the cyst off from around the ovary, not your actual ovary."
SPOILER ALERT - If you ever hear this RUN!
That didn't sit well with me and neither did the idea of surgery all together. To add insult to injury she informed me that I need to get this done ASAP and avoid all strenuous activity, including my job as a physical therapist. She explained it could rupture and become a life threatening situation or it could twist around my ovary causing ovarian torsion, which is also an emergency situation where the blood supply is cut off and I could lose my ovary.
YES all of that in one visit. SCARY. So on top of a life changing diagnosis, she scares the crap out of me.
Within a week, I conducted my research and discovered that the surgery my gynecologist proposed, commonly referred to as "ablation" surgery, would indeed harm my ovaries and often lead to more harm than good. I learned that excision surgery is considered the gold standard for treating endometriosis.
I realized that despite the fear instilled in me regarding the potential rupture or torsion of the cyst, my body had been resilient and active all this time! I had been exercising 4-5 days a week, and working a full time PT travel assignment. Just because these risks were presented didn't mean they would actually happen—after all, they hadn't occurred yet.
I made the decision to listen to my body while refusing to give in to fear. I labeled the fear tactics from my gynecologist as fear-mongering, a practice I despise!
Initially, I felt vulnerable, scared, and powerless, but through prayer, meditation, and journaling, I received confirmation that I am none of those things; in fact, I am quite the opposite—strong, capable, and resilient.
At that time, I found myself questioning everything from medical professionals. It was then that I stumbled upon The Endometriosis Summit, conveniently located just 1.5 hours away from me. It felt like fate—I knew I had to attend. The thought of surgery left me uneasy, and I was desperate for answers and trustworthy professionals. Attending the summit provided me with exactly that and so much more.
Fast forward a year later (this past weekend), I returned to the summit with new concerns, this time revolving around fertility and IVF. Once again, I found myself gaining invaluable knowledge that I couldn't find anywhere else. The sense of support, understanding, and community among fellow attendees was palpable. The Endo Summit is a truly powerful experience that you have to witness firsthand. In the meantime, I'd love to shed light on a specific takeaway from the event.
Ablation vs. Excision Surgery
If you have been diagnosed with endometriosis or suspect you have endometriosis, you may be told you need to have surgery. If you are a researcher like myself, you'll likely come across two types of endometriosis surgeries: ablation and excision.
Ablation, the more common procedure, often fails to address the root of the disease and is typically performed by surgeons without specialized training in endometriosis. They actually BURN the tissue off. (How does that not damage your ovaries? Anyway...) Unfortunately, endometriosis frequently returns after ablation surgery and in some cases can worsen the pain. When I went to my gynecologist, this is what she wanted to perform on me, without even informing me there was a better option, so be careful! I've encountered numerous women who've undergone multiple ablation surgeries—some as many as 3, 5, or even 10 procedures. Insane right?!
In contrast, excision surgery is widely recognized as the superior option. During excision surgery, they cut out the endo tissue at the root. This is known to not only provide longer lasting relief from symptoms, but also reduces recurrence. Based on my own experience and discussions with countless women over the past year, I can confidently say that excision surgery offers better outcomes. If this information is new to you, I encourage you to delve deeper and consider excision surgery. While many in the Endo community are familiar with this, I learned more about its importance and even something new during this weekend's summit.
Who you Choose for Excision Surgery Matters
Not all EXCISION SURGEONS ARE THE SAME. It's so sad but it's true. This year I spoke with women who have had excision surgery and continue to experience pain and debilitating symptoms.
It all brought me back to when I was deciding who I wanted to perform my excision surgery. My top choice was Dr. Sinervo at the Center for Endo in Atlanta. Dr. Sinervo is renowned as one of the top surgeons for endo excision. With endless excellent reviews, a personable demeanor, and a friend who had achieved optimal results there, I was sold. However, I decided to explore one more option—a doctor recommended by my Naturopathic Doctor, conveniently located just 2 miles from me. It was in-network (rarely heard of for excision surgery) and would have cost me only about $1500, which is very cost efficient for this type of surgery!
Initially, I leaned towards this option, but as I researched further, I found that although he had excellent reviews, none of them were specific to endometriosis. I had no way of knowing how skilled he was in this particular area besides taking his word for it. This uncertainty led to anxiety, and I demanded a follow-up appointment to ask more questions. Ironically, I printed the questions from the Center for Endo Care website. "What to ask when choosing a doctor for your endo care." During the appointment, I learned that he only performed about two excision surgeries a month. While he confidently answered other questions, I felt he didn't provide the correct answers when compared to Dr. Sinervo's expertise.
Ultimately, I found myself torn.
Despite the financial considerations, I decided to follow my gut and choose Dr. Sinervo in Atlanta. After making this decision, a weight lifted off my shoulders, and I felt immense relief knowing my body would be in the best hands, for a surgery I really didn't want to have in the first place. I received exceptional care at the Center for Endo and would recommend it ten times over to anyone considering excision surgery.
I have spoke with so many doctors after my surgery who cannot believe I still have both ovaries. They constantly look at my operative report and applaud the work my surgeon did with amazement. People are astonished to learn that my AMH level (test for ovarian reserve) actually increased significantly after surgery! While recovering from surgery wasn't easy and takes time, I fully embraced the healing process. I'm incredibly grateful for my body and for trusting my intuition in choosing Dr. Sinervo.
2 Quick Tips to Help Find Your Excision Surgeon
This weekend someone asked "How do you know how to choose the right excision surgeon?" And these were my favorite responses that I stand by!
Two tips when choosing your excision surgeon:
- Do they specialize exclusively in endometriosis cases? (Is this all they do?!)
- If you find yourself needing to ask specific questions, it might indicate you're in the wrong place.
If you are considering surgery, you can join Nancy’s Nook Facebook Group. It provides a comprehensive list of excision surgeons and offers many reviews on these surgeons. It's a valuable resource, although I understand it can be overwhelming at times. Because of that I'm going to give my personal recommendations.
My Recommendations for Excision Surgeons
Because this is my blog and I’m going to keep it all the way real with y’all...
If it were me and I had to undergo another surgery, here are the people I would trust. And just know, I am CRAZY picky. As we all should be when it comes to our health! That's why I'm only listing seven surgeons (in no particular order).
1. Dr. Ken Sinervo (my surgeon!)
Center for Endometriosis Care
Atlanta, GA
2. Dr. Andrea Vidali
BRI Reproductive Immunology & Endometriosis Surgical Center
New York City, NY
Instagram: @endometriosis_surgeon
3. Dr. Mona Orady
The Orady Women’s Clinic
San Francisco, CA
4. Dr. Eugenio-Colon
Center for Endometriosis Care
Atlanta, GA
5. Dr. Antonio Gargiulo
Brigham and Women’s Hospital, Center for Infertility and Reproductive Surgery
Boston, MA
https://physiciandirectory.brighamandwomens
6. Dr. Patrick Yeung
Veritas Fertility & Surgery
St. Louis, Missouri
https://veritasfertility.com/about-patrick-yeung-md/
7. Dr. Megan Wasson
Mayo Clinic
Phoenix, AZ
A regular gynecologist simply doesn’t have the experience or the knowledge. I see it as an investment in my health. While I understand the challenge of financial constraints, remember: you are worth it! There are resources available, and your health should always be a priority.
Not only does the type of surgery matter (Excision!), but who performs your excision surgery matters too! I wanted to maximize my chances for a successful, one-and-done surgery. You deserve that too. Even if you've already undergone surgery, if you're still grappling with debilitating symptoms or infertility, you deserve to seek out a better solution.
The Time to Start Living Again is NOW.
Even though our healthcare system needs significant improvement in how it treats endometriosis and legislative changes are necessary, we cannot afford to wait for those reforms to start improving our health and enjoying life again! The time to start living again is NOW.
Please do not allow limiting beliefs to hold you back. This includes financial limiting beliefs. There are various ways to afford excision surgery: insurance coverage, grants for people with endo, pro bono surgeries performed by surgeons, support from family members, tapping into savings or retirement accounts, taking out personal loans and paying them back over time, or, in my case, working tirelessly with a full-time job and running my own business to afford the surgery (not the best option, I might add!). Honestly, it took a lot of sacrifice and I had a really rough year, but after that, things got so much better for me and they can for you too.
A Piece of the Puzzle
I understand that surgery is just one piece of the puzzle when it comes to healing Endometriosis. I don't expect surgeons to be my Saviors or to resolve all my issues; I simply seek their expertise as a valuable addition to my team, where I am the captain. You should be the captain of your team too!
I wholeheartedly believe in taking control of your health, healing, and happiness. To achieve this, you must make decisions that intuitively align with who you are and what you want. Don't let fear, doubt or others decide what is best for YOU. I'm offering guidance based on my personal experience, but ultimately, the decision is yours. And you can't go wrong when you look within. You have the POWER!
As always, if you have any questions or just want to talk, please don't hesitate to reach out. I plan on sharing all the details of my excision surgery journey around my one-year anniversary in late June. Until then, I'll continue to share the holistic strategies that have helped me and continue to do so along the way.
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