Must Ask Questions For Your Surgeon

Updated July 2022:

* Do you only perform Excision and never ablate any areas? (Answer should be yes)

* How often do you perform complex excision of Endometriosis? (Answer should be MULTIPLE times per WEEK – Some of these experts are performing 6-10 cases per week. A few times per month is not enough to be highly skilled at excision of Endometriosis.)

* Are there any areas that you think can’t be excised? (Answer should be no.)

* Will you inspect behind my liver to check for diaphragmatic Endometriosis? (Answer should be yes)

* If there is diaphragmatic Endometriosis, can you excise it and excise it if it has gone through my diaphragm to my thoracic cavity? (Answer should be yes. Sometimes a mesh is necessary when Endometriosis has gone through the diaphragm.)

* If I have bowel endometriosis, can you perform a shaving technique or disc resection? If It has fully penetrated my bowel, do you have a colorectal surgeon on call to perform the resection in order to prevent further surgery for it? (Answer should be yes to all 3. These are the three techniques for removing bowel endometriosis and the technique that is used depends on how deep the endometriosis has gone into the bowel. Remember – a colonoscopy won’t pick up bowel endo.)

* Will you excise bladder endometriosis, or do you believe it can’t be done? (Some inferior surgeons think the bladder is too delicate to excise endometriosis from. A properly skilled surgeon can excise bladder endometriosis.)

* Do you perform surgery utilizing a nerve sparing technique to prevent damage to my pelvic nerves? (Answer should be a resounding YES! This is critical to prevent nerve damage that will cause continued pain.)

“The laparoscopic nerve-sparing complete excision of endometriosis is a feasible and reproducible technique in expert hands and, as reported in the literature, offers good results in terms of bladder morbidity reduction with higher satisfaction than the classical technique.” Marcello Ceccaroni et al. J Minim Invasive Gynecol. 2020 Feb.

* Do you take detailed pictures and/or video for me to review? (Answer should be yes and they should review them with you after surgery/at your follow-up)

Original post:

Laura and I recently did an Instagram live session where we discussed the importance of interviewing your surgeon before excision of endometriosis. I have included the discussion and list of questions here. I want to thank the Indian Centre for Endometriosis for making an Instagram post sharing these questions.  I have the questions listed in numerical order, then below I have elaborations with bullet points.

Questions to ask your endometriosis surgeon:

  • Endometriosis surgeons must be accredited with a fellowship in minimally invasive gynecological surgery for at least TWO years – you can ask for proof.
    • Legitimate fellowships have specified dates.
    • They should have spent time during or after at a high volume center that specializes in advanced endometriosis surgery.

      ” High-volume surgeons demonstrate reduced perioperative complications, shorter operative times, and reduced blood loss during multiple modalities of benign gynecologic surgery. Furthermore, high-volume surgeons consistently demonstrate higher rates of minimally invasive approaches, low rates of conversion to laparotomy, and lower per-procedure case costs. It is suggested that surgeons who have completed postresidency training have improved surgical outcomes, although these data are limited. Surgical exposure in obstetrics and gynecology residency is varied and does not consistently meet demonstrated surgical learning curves. Deficiencies in residency surgical training may be related to the volume–outcome relationship. We suggest reforming residency surgical training and tracking postresidency practice to provide optimal surgical care. Additionally, surgeons may have an ethical obligation to inform patients of their surgical volume and outcomes, with options for referrals if needed.” -Glaser, Laura M. et al.Journal of Minimally Invasive Gynecology, Volume 26, Issue 2, 279 – 287


      “The problem is that gynecologic surgery just isn’t like other surgery, in that unlike your typical general surgeon that does hundreds of surgeries a year, most general obstetrician gynecologists who deliver infants actually don’t a great deal of surgery.   Most operate 1 or 2 days a month, and may do fewer than 10 major gynecologic surgeries a year.  And even though the data clearly shows that this volume of surgery isn’t enough to maintain a level of skill that leads to a minimal level of complications, it is very unlikely that a low volume surgeon will tell their patients that on the average they would have better outcomes if they sought surgical care with a specialist gynecologic surgeon. “ –Dr. Nicholas Fogelson

  • Always check credentials. Doctors are not immune from lying.
    • This year I spoke with a surgeon I found through the AAGL Physician Finder who promised me she only performed excision surgery. Here is what she wrote to me:

      ” Hi Katie, I apologize for the delay.  I am certainly happy to hear that you have had a successful treatment.  Endometriosis can be a very frustrating condition and I find that the general physician knowledge about the disease is limited.  I have a practice focused on complex gynecology in KC since I graduated from fellowship over 7 years ago.  Over time it has become more focused on endometriosis and fibroids.  I would be happy to take care of patients in KC with endometriosis.  I offer a full range of options including surgical excision.  Please let me know if you have any other questions.… I do excise endometriosis – I can not think of a time that I have ablated the disease.   I will discuss medical options with patients as I believe it is important to consider postoperative medical management for treatment of microscopic residual disease or to prevent recurrence.  But as I tell all my patients – I’m here to provide advice but we  make the decisions together.  I hope that helps.”


      So there are a few large red flags with her response, especially that she believes medical intervention can “clean up” residual endometriosis (false). If a surgeon is telling me that, they are also telling me they don’t have the skill to find and remove all of the disease. This isn’t the lie, though. The lie is that she told me she could not think of a time she had ever ablated. I spoke with a patient of her’s who had undergone surgery with her whose post-op report specifically stated that she ablated the disease. So, there’s that.

    • If the credentials aren’t there, it is time to move on and continue to advocate for yourself. You are not required to stay with a doctor because they have treated you for years, been your friend, or any other reason. You have to find the surgeon with the best skill.


  • Multidisciplinary team is essential because endometriosis is a whole body disease.
    • While the gynecologist will take the lead role, additional surgeons need to be available if there is additional organ involvement such as the bowel, ureters, bladder, diaphragm, etc.
    • Also needed is a good imaging specialist to examine pre-operative imaging
    • Fertility specialists if that is wanted, pain management specialists, and physical therapy

      After my surgery at the CEC I was given information about pelvic floor physical therapy and a compounding pharmacy for vaginal valium. They acknowledge that excision surgery is not just a one and done treatment for Endometriosis.


  • The surgery center you interview should focus primarily on endometriosis.
    • They should be doing at least 150 cases of advanced endometriosis per year
    • Larger centers do around 400 cases per year; these surgeries can take between 2-7 hours
    • A traditional OBGYN practice cannot handle this volume

  • Ablation vs Excision
    • I forget to discuss this because I feel like most of us in the Endometriosis community are aware of the differences due to the many awareness campaigns out there – but it is important for me to remember that everyone’s journey is at a different place. I want to further elaborate on these differences like we did on our live session.
    • Ablation (Electrocautery, fulguration) – When we talk about ablation we are also discussing fulguration. This entails utilizing a heat source to essentially burn off any endometriosis lesions the surgeon may see. This is a superficial treatment.
      • “Electrocautery uses electrical current to heat a metal wire that is then applied to the target tissue in order to burn or coagulate the specific area of tissue. It is not used to pass the current through tissue, but rather is applied directly onto the targeted area of treatment. Using this technique, heat is passed through a resistant metal wire which is used as an electrode. This hot electrode is then placed directly onto the treatment area destroying that specific tissue.”
      • “Electrosurgery passes electrical current through tissue to accomplish a desired result. The electrode selection depends upon and intended outcome.. These instruments can be used to cut, coagulate , or even to fuse tissue.”
      • CO2  Laser Ablation – “Ablative lasers generate beams of coherent light that are absorbed by the body’s tissue as energy. The energy is delivered through a narrow range of wavelengths, and in the target area, the energy causes temperature elevation which results in tissue evaporation or ablation” 
        • “The mean recurrence rate of endometriosis is estimated to be around 20% (range 0–89.6%) at 2 years of follow-up.”
        • “The problem with superficial treatment is that we cannot see underneath what was ”burned” and hence more often than not, some disease is left behind. This will help with pain initially because the disease load is less, hence causing less inflammation. However, because the remainder of the disease that is left behind (no matter how little) will continue to progress, pain will almost always return over time. On top of this, there may be more adhesion formation as a result of improper healing due to the presence of residual endometriosis. Once pain returns, or right after surgery, most gynecologist will start with medical suppression. The re-operation rate with superficial surgical treatment is very high – 80%. This is when the medical-surgical cycle is repeated until it no longer helps. Then, a hysterectomy and removal of the ovaries is performed, putting the patient into surgical menopause. This is a very harsh and thoughtless treatment, but unfortunately, all too common.” -Nick Kongoasa, MD
          Excision – to cut out surgically; to remove by cutting. Typically this is accomplished with a laser. It can also be done utilizing electrosurgical equipment. 

  • ” Laparoscopic Excision” (LAPEX) is the surgical cornerstone of any high quality, multidisciplinary approach to correctly treating endometriosis. LAPEX allows for the disease to be meticulously removed – cut out – from all areas, without damaging surrounding structures or removing otherwise healthy organs. ” -Center for Endometriosis Care
    1. Various lasers can be used for Excision surgeries in addition to different energy sources. I believe CO2 is the most commonly used.
    2. CO2 can be used to Ablate and Excise. SO just because a surgeon uses CO2, it does not mean they are properly excising. This is where the importance of training comes in.
    3. CO2 lasers are more precise and cause less thermal injury (burning, scar tissue, etc)

      ” Excision surgery demands that the CO2 laser is used as a knife. The beam is used to outline the tissue to be excised, forceps elevate this tissue, and the beam continues to completely excise the lesion by separating it from normal tissue…..      . It delivers the least amount of destruction to the healthy tissue that surrounds the endometriosis lesion. This is important, because as you’ll recall, ablation, or the burning of endometriotic tissue, can cause plenty of adhesions—something you don’t want if you’re trying to conceive.” – Harry Reich, MD

      Adding to the complexity of excising with CO2 lasers is that these lasers can provide a continuous or pulsed beam of energy.
      1. Continuous – Continuous laser beam and is useful for applications in which some thermal effect is desired
      2. Produces short-duration, high-energy pulses and is particularly useful for applications that require minimal thermal damage (That is what we want when removing endometriosis!)
  • Fortunately, many advanced lasers now have built in components so the surgeon can choose which settings they want during surgery. Not all tissue is created equal, not all lasers are created equal, and we know not all surgeons are created equal.
  1. Have you done a fellowship in minimally invasive surgery?
  2. If yes: For how long and where?
  3. Have you trained at a center that specializes in endometriosis and advanced gynecological surgery?
  4. Do you have a multidisciplinary team in place to deal with extra pelvic endometriosis?
  5. How many cases of endometriosis do you do per year?
  6. Do you perform excision or ablation?
  7. What are your recurrence rates?

 

 

Recurrence is ALWAYS a risk. Expert excision keeps recurrence rates extremely low, as low as 7%.

We know ablation recurrence rates are 50-80%

If you know my story, you know that I have been Endometriosis free since July 5, 2017. My surgery, as with most excision of endometriosis surgeries, was in no way a conservative treatment, and I am absolutely happy about it. In all honesty, I was perfectly happy with telling Dr. Sinervo that he could remove anything that I could survive without if it was even slightly suspicious because I was DONE. BUT – that is only because I had studied my surgeon enough to know that his experience and results justified that trust. If your OBGYN is suggesting organ removal as a definitive treatment for Endometriosis, RUN. Find another doctor.

Nancy’s Nook on Facebook is a good resource for endometriosis education and finding a qualified surgeon based on patient experience/feedback and surgeon skill. Not all of these surgeons are exceptional, but it is a good starting point. I’m aware it isn’t easy, it can be expensive, and it likely requires travel. But until a major shift happens within ACOG and insurance companies, this is what we have to do to get relief. Laura and I will help you in any way that we can because we work hard as patient advocates, so feel free to message us for help.
I added up the costs of missed work, failed medical treatments, supplements, and failed ablation surgeries and it was more money than I would spend getting my excision surgery. I had to put it in perspective and I am forever grateful I took the leap.

So, research surgeons, and interview them. Ask these questions. You are absolutely worth the effort. ❤
Love,
Kate