the chronicThe medical treatment of endometriosis involves surgery. Endometriosis surgery is considered to be one of the most complex and difficult surgeries in the human body. There are several surgical options currently available. It is important to learn about each surgical method, as well as your doctor's approach to endometriosis surgery, to make the best decision for your care.
It's important to note that surgery with a confirmation of biopsy specimens is the only definitive diagnostic tool for confirming endometriosis. Laparoscopy surgery is the most common diagnostic surgery and is also considered a cornerstone of treatment for the disease. Laparoscopy is a minimally invasive procedure in which the endometriosis lesions are removed.
Excision
During laparoscopy, the surgical options of removal include excision and superficial treatments such as ablation, fulguration, diathermy, vaporization, cautery, etc. Laparoscopic excision, or LAPEX, is the removal of the entire lesion where it is found. Superficial treatments only target the lesion's surface.
Endometriosis acts like an iceberg. Despite the disease being identified above the surface of the tissue, the majority is implanted into the tissue below the surface. This is why it is so important to find a surgeon who removes lesions in their entirety.
Since endometriosis lesions are often deeply imbedded in the surrounding tissue, a thorough approach like excision is needed for complete removal. During excision surgery, the lesions are cut out and the tissue underneath is evaluated for abnormalities and removed if necessary.
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.
Studies have found the complete removal of the entire lesion is necessary for symptom relief and successful disease management. LAPEX has been associated with a low rate of minimal persistent/recurrent disease and symptomatic improvements in general health, sexual function, fertility, and quality of life. When performed by an advanced surgeon, the outcomes of excision are far superior to superficial treatments and have a re-operation rate of 20%. In comparison, the re-operation rate for superficial treatments is 80%.
The high rates of recurrence associated with endometriosis surgery in the literature strongly depend on the completeness of disease removal. LAPEX is a well-established yet under-practiced approach, with the goal at the time of surgery to completely respect all disease, restore normal anatomy, and apply measures for adhesion prevention. Data suggest that the surgical objective should be complete eradication; therefore, the surgeon must be prepared to excise all lesions suggestive of endometriosis as well as all atypical tissue, because in most anatomic sites, approximately 50% of atypical specimens prove to be endometriosis.
Ablation
Since lesions are deeply implanted in the surrounding tissue, superficial treatments leave much of the disease behind, untouched, and remaining to further progress. This explains the high recurrence of re-operation for superficial methods. Adhesion formations can also increase substantially due to the presence of residual endometriosis, even in small amounts. The high heat and energy used during surgery can also damage surrounding healthy tissue leading to excess scar tissue. Superficial treatments, like ablation, cannot reach deep implants so there are no tissues for pathology to confirm the diagnosis.
In most cases, ablation/cauterization surgery will not be effective for long-term management of endometriosis because the tissue remains below the surface. In many cases, the inflammation following ablation and cauterization can be another source of pain. This is why excision surgery is the gold standard for treatment. If a patient is considering surgery, it is important that they ask their surgeon the method for removal.
As with any surgery there are risks and surgical complications to consider. Complications during endometriosis surgery can include damage to organs, thermal and direct traumas, and excessive bleeding. After surgery complications can include infections, urinary and bowel difficulties, and prolonged vaginal bleeding. Due to the intensity of deep infiltrating endometriosis surgery there are other complications to consider including, urinary tract injuries, vascular lesions, and liver injury.
Excision Specialists
While the type of surgery ultimately matters, the skill of the surgeon defines the quality of surgery for patients. Unfortunately, a majority of gynecologists are only trained in superficial methods such as cauterization or ablation. Due to the lack of knowledgeable providers, it's estimated that there are only as few as 100 excision surgeons worldwide for a patient population exceeding 175 million people. Clearly there is a stark lack of support which makes appropriate care even more scarce. Excision surgery is commonly not covered by health insurance and is also one of the most expensive options, making it inaccessible for many patients.
Who performs the surgery, how and when is of critical importance, however; excision is a highly advanced surgical technique requiring extensive training. Likewise, accuracy in diagnosis and treatment is dependent on the ability of the surgeon to recognize disease in all its different manifestations. This means, if the surgeon is not familiar with all signs of endometriosis... then disease will be missed and left behind untreated; surgeons can only see and treat what they recognize.
Clinical trials that study the long-term outcomes of LAPEX compared to other treatments have determined that it is the gold standard of care for endometriosis. As discussed above, the skill and clinical experience of the surgeon is equally important to a patient's outcome and should also be considered before surgery.
In the medical field, a 'gold standard' treatment for a disease is one that has been proven through validated clinical trials to have the best long-term outcomes and the least complications when compared to other methods of treatment. It simply means that there is no better treatment. In the case of surgical management for treatment of endometriosis, the gold standard is now complete and total surgical excision of any and all visible implants of endometriosis with wide margins around all endometriosis and removal of all underlying scar tissue.
Why is Hysterectomy not a treatment option?
Hysterectomy is not a suitable treatment option for endometriosis. Since endometriosis is found outside of the reproductive organs, removing the uterus does not remove the disease. Endometriosis can remain symptomatic after hysterectomy, with or without estrogen therapy. Hysterectomy can be used to treat other conditions that can be gynaecological comorbidities of endometriosis, including adenomyosis and fibroids. In that event, it is recommended that excision be used during the hysterectomy to remove endometriosis.
It is a common myth that having a hysterectomy will cure endometriosis. There is no cure for endometriosis and a hysterectomy is rarely the best treatment. Most endometriosis is located in areas other than the reproductive organs. If you simply remove the uterus and do not excise the remaining lesions, the patient will continue to have pain.
Finding a Specialist
Finding a knowledgeable and compassionate provider can be one of the hardest aspects of managing the disease. Without proper medical support, the symptoms can become chronic comorbidities that will need their own medical intervention. Knowing how to communicate with your doctors and how to gauge their expertise in endometriosis care are important skills to learn. Several communication and screening techniques are offered below, as well as tools for finding an endometriosis specialist near you.
- Nancy's Nook is a self-guided research tool that provides an updated list of excision specialists that have undergone a specific vetting process developed by nurse and endo activist Nancy Peterson.
- The American End of Endo Project has a physician's directory, which is a locator tool for excision specialists.
- Endometriosis.org provides some key points on finding a specialist.
- Endo West: Endo and Pelvic Surgery Center has a list of questions to ask your doctor before surgery.
- Endometriosis Foundation of America provides valuable advice on seeking a specialist for endometriosis.
- Must Ask Questions for Your Surgeon was created by the Endo Girls Blog to help you select a doctor and feel confident in your choice.
- Do You Need That Surgery? How to Decide, and How to Pick a Surgeon if You Do is a helpful NPR article about navigating surgery in general.
- What to Ask When Choosing A Doctor for Your Endo Care is a list of questions to ask your potential doctor before trusting them with your care. It was developed by the Center for Endometriosis Care.
- Center for Endometriosis Care is among the very first endometriosis specialty centers of expertise, founded by a surgical pioneer and excision surgeon, Dr. Robert Albee.
- Dr. Andrew Cook, MD is a trusted endometriosis excision specialist located in California and Colorado.
- Dr. Andrea Vidali, MD is a trusted endometriosis excision specialist located in New York, New York.
- Dr. Iris Orbuch, MD is an endometriosis expert and surgeon in Los Angeles, California.
- Possover International Medical Center is the world's first center for Neuropelveology which was founded and pioneered by Professor Marc Possover. This clinic specializes in pelvic nerve laparoscopy.
- The Pelvic Pain Project created the Pelvic Pain Assessment, which is a HIPAA-compliant assessment tool that can create more meaningful patient/doctor communication and encourage necessary referrals.
- Gynecologic Surgeons Unscrubbed is a series-based podcast developed in collaboration with the Society of Gynecologic Surgeons focusing on surgical and medical education, hosted by Cara King, DO, MS.
- Funds for Excision Surgery was created by Endo InVisible whose mission is threefold: raise the profile of, educate the world about, and help fund surgery for endometriosis. If you need funds for excision surgery, they may be able to help.
For the next article in the Endometriosis Series, see Hormonal Medications for Endometriosis
Endometriosis Series
- Endometriosis 101
- Symptoms of Endometriosis
- Causes of Endometriosis
- How Endometriosis Is Diagnosed
- Treatments for Endometriosis
- Surgical Treatment for Endometriosis
- Hormonal Medications for Endometriosis
- Complementary and Alternative Therapies for Endometriosis
- Endometriosis in Adolescents and Teens
- Endometriosis Resources
- Endometriosis Books