Deep endometriosis, including bowel endometriosis, happens in more than 10% of all women with endometriosis. Because it can be debilitating and difficult to diagnose, how is it identified?
Dr. Kho: Diagnosing deep infiltrating endometriosis (DIE) is one of the biggest challenges in the field. Currently, the gold standard is still histologic confirmation of endometriosis lesions, but I think the paradigm is shifting significantly. Advanced centers are now moving towards the use of imaging to visualize suspected endometriosis better. In skilled hands, ultrasonography and MRI can accurately detect DIE. The advantage of visualizing suspected deep endometriosis before surgery is that we can offer better counseling to patients and offer medical or surgical treatments or a combination of both. When the patient chooses surgery, we can be better prepared with a multidisciplinary team to remove the lesions completely.
The treatment of deep endometriosis can be challenging because it does not always respond to medical therapy, such as oral contraceptive pills or GnRH agonists. What treatment options have shown effectiveness?
Dr. Kho: It should be understood that we need to manage the symptoms and not the lesions. Just because there are endometriosis lesions identified does NOT mean that they need to be removed. The decision should be based on what the treatment goals are. A good discussion with the patient is important to determine what the treatment objectives are. Are we managing pain? Are we surgically treating infertility? Are we treating something else, such as bowel obstruction or blood in the urine? These questions and their answers should be first and foremost in the clinician’s mind.
Different medical treatment therapies are available and have been shown to be effective in managing endometriosis symptoms without having to immediately resort to surgery as with certain cases of suspected DIE. These medical management options include combined estrogen and progesterone contraceptive formulations, progesterone-only formulations, and GnRH agonists and antagonists. Patients should be counseled about the different options and their associated risks. Often, patients need to switch from one form to another when side effects encumber them.
If imaging or an exam reveals incidental findings of suspected deep endometriosis, it does not mean that treatment is required because some patients can be without symptoms or have no issues. But when the indication for pain or desire to achieve a pregnancy is clear, and the decision is to proceed with treatment, there are some guidelines:
- If the pain is severe and affects the patient’s daily quality of life, for example, with large, deep lesions, surgical excision appears to be effective in improving the patient’s quality of life.
- If infertility is the main indication, then other factors need to be considered. Has she had previous surgeries? What is her age? What is her ovarian reserve? What is the condition of the tubes? Is the use of artificial reproductive technology, or ART, an option for the couple? What is her cancer risk?
- Lastly, what is the extent of the lesion(s)? Both medical and surgical approaches for treatment carry risks. For surgery, complications can be severe with long-term consequences. Therefore, it is important to discuss all of this in detail with the patient.
When we understand what the main goal of the treatment is for endometriosis—such as either to treat pain or to achieve pregnancy, or both—we can tailor our surgical approach to achieve the goal(s). For example, in a patient who wants to achieve a pregnancy in the future, we may opt to do only what is necessary to remove endometriosis and relieve pain without impairing the patient’s fertility potential and overall quality of life.
Post-operatively, if the patient does not desire to become pregnant, medications to suppress the ovaries are an option to reduce the chance of disease recurrence.
What pearls can you provide when it comes to surgical techniques available and benefits for short- and long-term risks and limitations?
Dr. Kho: The surgeon should tailor his or her level of radicality to excise endometriosis to achieve the treatment goals that are mutually agreed on with the patient. For the surgeon bringing the patient into surgery, go in prepared. I strongly believe in preoperative imaging to provide the best mapping of the disease and in having other specialists or surgeons available—whether it be a urologist, a colorectal surgeon, a thoracic surgeon, a vascular surgeon, or an orthopedic surgeon (if needed)—depending on where the lesions are located.
Because we know that the best surgical outcomes come from surgeons with the highest volume, providers should be willing to refer patients with advanced disease to centers that specialize in the treatment of endometriosis. Many providers with this expertise undergo additional training to advance their skills. Advanced centers in endometriosis also provide patients with a multidisciplinary team to provide the best care.
What is the most optimal setup for a multidisciplinary team treating deep infiltrating endometriosis?
Dr. Kho: You will find that advanced centers for endometriosis will have in place a multidisciplinary team that includes a pain specialist, a surgical specialist, a pain psychologist, physical therapy, urologist, colorectal surgeon, and other sub-specialty surgeons to be able to look at the patients from all the different aspects. Often a reproductive endocrinologist or REI specialist would also be part of the group.
At our center, we have what we call a “benign tumor board,” where we discuss complex cases with representatives from different areas. This allows us to discuss the case, review what is known in the literature, and collectively develop a treatment plan.
Is there anything that was not covered in this discussion that you would like to mention?
Dr. Kho: Something that should be mentioned is that ovarian endometriosis is often associated with advanced endometriosis, often Stage 3 or 4. Clinicians should be aware that when imaging suggests the presence of ovarian endometriosis, studies show that the disease is isolated in the ovary in only 15% of cases—meaning that there is an 85% chance that endometriosis is present elsewhere in the pelvis. Therefore, the surgeon should be prepared for more extensive dissection when they bring the patient into surgery.