How to Find an Endometriosis Excision Specialist and Questions to Ask
Endometriosis is a chronic disease that affects millions of women worldwide, causing pain, discomfort, and various other symptoms. While there are several treatment options available, endometriosis excision surgery is considered the gold standard. Finding a skilled endometriosis excision specialist is crucial for receiving the best possible care and achieving optimal results. Let’s discuss how to find an endometriosis excision specialist and provide a list of essential questions to ask during your consultation.
Finding an Endometriosis Excision Specialist
Research online: Start by searching for endometriosis excision specialists in your area. Look for websites dedicated to endometriosis, such as the Endometriosis Foundation of America, The Endo Co, or Nancy's Nook Endometriosis Education, which provide resources and directories of experienced surgeons.
Seek referrals: Ask your primary care physician, gynecologist, or other healthcare providers for referrals to endometriosis excision specialists. They may have connections or knowledge of skilled surgeons in your area.
Join support groups: Connect with local or online endometriosis support groups. Members of these communities often share their experiences and can recommend skilled excision specialists. MyAdvo is one example of a patient advocacy group providing guidance to endometriosis patients.
Check credentials: Once you have a list of potential specialists, research their credentials, training, and experience. Look for surgeons who have completed fellowship training in minimally invasive gynecologic surgery and have a strong focus on endometriosis excision.
Questions to Ask an Endometriosis Excision Specialist
When consulting with a potential endometriosis excision specialist, asking the right questions is essential to ensure they have the skills and experience necessary to provide the best possible care. Here are some key questions to ask:
1. What kind of imaging do you do preop? MRI or high def/3D ultrasound? If not, why not?
- Look for a specialist who uses advanced imaging techniques like MRI to rule out other conditions and potentially diagnose adenomyosis. While endometriosis lesions do not typically show up on scans, which is why surgery is currently the only definitive diagnostic method, an MRI can help identify other issues and is considered the best imaging tool to confirm a diagnosis of adenomyosis. If a specialist doesn't use MRI, ask for their reasoning.
2. How many surgeries do you do in one day?
- Be cautious if a surgeon performs more than 2 or 3 endometriosis surgeries per day, as this may suggest they are performing ablation rather than the more time-consuming excision technique.
3. Do you have other surgeons assisting you in the operating room?
- Having a skilled surgical team can contribute to better outcomes and more comprehensive treatment.
4. How do you detect endometriosis? How do you detect adenomyosis?
- A skilled specialist should have experience detecting endometriosis through visual inspection and palpation during surgery. They should also be knowledgeable about identifying adenomyosis, which can co-occur with endometriosis.
5. Have you done any manual excisions?
- The answer to this question must be yes. Manual excision is the gold standard for removing endometriosis lesions and ensures complete removal.
6. How can you be sure you have removed all the endometriosis robotically? Do you use blue dye/contrast to 'light it up' and see all the deep endometriosis lesions?
- If the surgeon uses robotic assistance, ask about their techniques for ensuring complete removal of endometriosis. The use of blue dye or contrast can help identify deep lesions that may be missed otherwise.
7. What percentage of your patients come back presenting more endometriosis?
- A skilled excision specialist should have a low recurrence rate. While endometriosis can recur due to various factors, a low percentage of patients returning with new growths can indicate the surgeon's expertise in complete removal.
8. What if my endometriosis is extensive and involves other organs?
- The specialist must be trained to remove endometriosis from the ureter and all organs, specifically pelvic ones such as the bladder, rectum, colon, appendix, etc. This ensures comprehensive treatment of the disease.
9. What is your experience with bowel resections?
- The surgeon must have experience with bowel resections and work with a gastroenterology surgeon if one is needed in the operating room during surgery for deep infiltrating lesions around the colon/rectum.
10. Do you film the surgery? If not, how can you show/prove what's been removed?
- Filming the surgery provides visual evidence of the extent of endometriosis and the thoroughness of the excision. If the surgeon does not film, ask how they document and demonstrate the completeness of the excision.
11. What is your post-surgery protocol?
- Understanding the post-surgery protocol, including pain management, follow-up appointments, and any necessary medications or therapies, is essential for a smooth recovery.
12. Do you prescribe Lupron?
- The surgeon's answer must be no. Lupron is a harmful drug that can cause significant side effects and should not be used as a primary treatment for endometriosis.
13. Do you provide colonoscopy prep the night before surgery?
- Not all surgeons require this, but most do. Colonoscopy prep helps prevent infection if surgical work is done in the bowel area.
14. Do you provide Cytotec to insert vaginally and dilate the cervix the night before surgery?
- While not necessary, this is highly recommended to decrease trauma to the body during the surgical procedure.
Validation and Understanding from an Endometriosis Specialist
A skilled endometriosis excision specialist will not only have the surgical expertise to effectively treat the condition but will also validate your experiences and concerns. They understand the significant impact endometriosis can have on your quality of life and will not dismiss or downplay your symptoms.
A proper endometriosis specialist will:
Acknowledge your pain: They will listen to your concerns and validate your experiences with pain and other symptoms. They will not tell you that the pain is "in your head" or that your symptoms are not real.
Understand the causes: A skilled specialist will have a deep understanding of the underlying causes of endometriosis and the various ways it can manifest in the body. They will take the time to explain the condition to you and answer any questions you may have.
Provide a comprehensive treatment plan: In addition to discussing surgical options, an endometriosis specialist will work with you to develop a treatment plan that addresses your unique needs and concerns. This may include pain management strategies, pelvic floor therapy recommendations, lifestyle modifications, and ongoing support.
When seeking treatment for endometriosis, it is essential to find a specialist who not only has the surgical skills to effectively treat the condition but also provides the validation, understanding, and support you need throughout your journey.
Finding a skilled endometriosis excision specialist is essential for receiving the best possible care and achieving optimal results. By researching potential specialists, seeking referrals, and asking the right questions during your consultation, you can make an informed decision and take control of your endometriosis journey. Remember, a proper endometriosis specialist will validate your experiences, understand your pain, and work with you to develop a comprehensive treatment plan that addresses your unique needs.