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Endometriosis Recurrence

Persistence/recurrence rates tend to be lower among more experienced excision surgeons, but all surgeons have persistence/recurrence. Recurrence can depend on the surgical technique, the surgeon’s skill, the completeness of the excision, the type of endometriosis, location of the lesion, patient’s age, patient’s genes, the length of time post-excision, and other factors.

Recurrence means disease coming back after surgical removal. Persistence means disease remaining because it wasn’t removed during the surgery.

Will I have endometriosis recurrence?

There’s no way to predict that prior to excision surgery. Recurrence rates vary in the literature from 6-67% Apart from the factors I mentioned above, recurrence rates in the literature are also influenced by the definition of recurrence used. Some studies define recurrence as pain returning (without proof that the lesions have returned). Others define it as no improvement in fertility. Others define it as visually seeing endometriosis on images or using histological confirmation via pathology. 

Among many high volume, expert excision surgeons, the rate of actual disease recurrence / persistence is around 7-20%. If we use 20% as an excision recurrence rate, then out of 200 million people worldwide with endometriosis, that is 40 million people who will have endometriosis recurrence after an excision.

Some people will need to have another complete excision, or multiple excisions, even when they see high volume, top tier surgeons. Or they may need another surgery for adenomyosis or adhesions, even though endometriosis didn’t recur.

“Recurrence/persistence of actual endometriosis can occur (albeit at a far lower rate than with fulguration, ablation, vaporization, etc.), even after sharp and meticulous dissection in the most skilled of hands – yes, even ours. Interestingly, some data imply that true recurrence may actually be higher in patients with lower stage disease (Koh, et. al.) vs. advanced stages. It has long been noted in the literature as well that some disease in younger patients is more ‘aggressive’ with a ‘higher recurrence rate’ and may even be a ‘different form of endometriosis altogether’ (Dovey et al.). This, then, does not imply lack of meticulous skill or excisional attempts on the part of the surgeon (who is, first and foremost, human, after all!) – but rather, can be attributed to the complex, insidious nature of this disease.” [Source: Was My Surgery a Failure? from the Center for Endometriosis Care website].

About recurrence

Recurrence of pain doesn’t always mean that endometriosis has recurred. Sometimes people re-operate because they are sure their endometriosis lesions are back, but there is no endometriosis found on pathology but rather adhesions, adenomyosis, fibroids, or other something else. And unfortunately, after years of systemic inflammation and this disease ravaging your body, it can have an effect on your pelvic floor, central nervous system, gut health, and more. 

In cases when endo is found at reoperation, often there is much less endometriosis than there was found at the first excision. When there is recurrence of endometriosis, it typically tends to involve less areas than seen in the prior surgery. Endometriosis recurrence also tends to be superficial, not deep nor surrounded by fibrosis. Endometriomas can have high rates of recurrence, even when excised by an expert. Note: an endometrioma recurring doesn’t mean that your superficial or deeply infiltrating endometriosis has also recurred in other areas.

Surgeon skill matters and can affect your outcome.

Not all excision is equal. Surgery is operator dependent, which means that the surgeon’s skills are critical. However, as stated above, even excision with top tier surgeons cannot guarantee your desired surgical outcome. All surgeons have persistence and recurrence. All surgeons have complications. But these rates vary per surgeon and tend to go down with the more experience the surgeon has.

Unfortunately, there are only a few hundred excision surgeons worldwide, and their skills vary, their experience varies, the number of surgeries they do a year varies, and so excision is not the same among all of us. Some surgeons are just starting out with excision, others have done over 7,500 cases! It can’t be stressed enough that different excision surgeons have different skill levels.

Reminder: Being on a Facebook group list, a vetting platform, or any other platform/list is not a guarantee of a surgeon’s skills. It’s still vital to vet any surgeon you find to make sure they are qualified to safely and completely excise endometriosis. See my page on How to Find a Surgeon.

Surgeons should be able to recognize the disease in all its forms/colors.

It’s important to try and get the most complete excision possible, as disease left behind can be a source of continued pain. Endometriosis has multiple forms and colors; it can be hidden in peritoneal pockets or have a subtle looking appearance.

In a study by Albee, Sinervo, and Fisher, surgeons excised all areas of viscera and peritoneum either with typical appearance suggestive of endometriosis or atypical appearance. These were then looked at histologically (under a microscope). One of the findings what that 24.3% of the atypical-appearing tissue that was not thought to be endometriosis was indeed endometriosis!

“These data suggest that when the surgical objective is complete eradication of endometriosis, the surgeon must be prepared to excise all lesions suggestive of endometriosis and tissue atypical in appearance as in most anatomic sites approximately 25% of atypical specimens proved to be endometriosis.” (1)

Surgeons should be able to excise endometriosis from all locations.

It’s important to try and get the most complete excision surgery possible. Unfortunately, some surgeons who call themselves excision surgeons do ablation instead of excision, or a combination of ablation and excision. Others do excision only, but leave endometriosis behind unintentionally because they don’t have the skills to recognize subtle appearances of endometriosis; or they don’t excise deep enough or with wide enough margins. Others leave endometriosis behind intentionally because they lack the skills to safely remove it from all locations.

I thought this study by Carmona and his colleagues (2) was interesting, which looked at the 60 cases of conservative laparoscopic surgery for rectovaginal endometriosis done by a team of 2 gynecologists. They split the 60 patients into 2 groups: the first 30 cases (patients 1-30), vs the second 30 cases, (patients 31-60).

These groups were similar in patient characteristics. What they found was that as the surgeon’s experience increased, the operating times were shorter, there was less estimated amount of blood loss, less cases of incomplete removal of endo, and lower recurrence rates, among other findings. The researchers also found that surgical completeness was significantly associated with recurrence of disease, so the more complete the removal of endometriosis, the less recurrence. The recurrence rate for the first patients, 1-30, was 30%. The recurrence rate for the second group of patients, 31-60, was 10%. See the full study for the methodology and limitations.

Surgeons should have low rates of complications.

Across the world, excision surgeons have different skill levels. What one surgeon deems too risky (such as bowel or bladder endometriosis), another expert may be able to remove with no problem. A good surgeon can recognize when the case is beyond their skill level and refer the patient to someone with more skills who can operate on more complex cases.

Sources

  1. Albee RB Jr, Sinervo K, Fisher DT. Laparoscopic excision of lesions suggestive of endometriosis or otherwise atypical in appearance: relationship between visual findings and final histologic diagnosis. J Minim Invasive Gynecol. 2008 Jan-Feb;15(1):32-7. doi: 10.1016/j.jmig.2007.08.619. PMID: 18262141.

  2. Carmona F, Martínez-Zamora A, González X, Ginés A, Buñesch L, Balasch J. Does the learning curve of conservative laparoscopic surgery in women with rectovaginal endometriosis impair the recurrence rate? Fertil Steril. 2009 Sep;92(3):868-875. doi: 10.1016/j.fertnstert.2008.07.1738. Epub 2008 Oct 1. PMID: 18829016.