Endometriosis Recurrence

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What is endometriosis recurrence?

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

Persistence/recurrence rates tend to be lower among more experienced excision surgeons, but all surgeons have persistence/recurrence.

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%. Recurrence depends on many factors, such as the location of the endometriosis, the completeness of the excision, the patient’s age, the patient’s genes, and more. Additionally, recurrence rates in the literature are also influenced by sample size and 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 the rate of reoperation in patients (regardless of whether endometriosis is found or not).
• Others define it as visually seeing endometriosis on images or using histological confirmation via pathology (this is how I define actual disease recurrence).

In studies, it’s also hard to know the surgeon’s skill and if complete or incomplete excision was done during the surgeries – so is it actually recurrence or is it persistence? 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].

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. 

“Once meta-analysis or systematic reviews are taken into account, when 23 trials are analyzed, Vignali et al. expressed that the respective rates of recurrence for 3 and 5 years are 20.5 and 43.5% for the relapse of pain. However, the clinical recurrence rates after those periods of time were 9 and 28%.

Exacoustos et al. defined the term of recurrence as cysts with a diameter of more than 10 mm and found that pain is a realistic determinant factor on surgery and 76% of patients who have a recurrence had pain related symptoms.

Those findings suggest that recurrence rates for pain and related symptoms are higher than the clinical recurrence rates detected by presence of imaging findings such as endometrioma.” (8)

Among others, the study The effects and effectiveness of laparoscopic excision of endometriosis: a prospective study with 2-5 year follow-up by Abbott J A et al also found that the “return of pain following laparoscopic excision is not always associated with clinical evidence of recurrence.” 

Studies show that in general, endometriomas have a higher recurrence rate that other types of endometriosis. A study by Veth et al (6) performed a systematic literature review and meta-analyses of various databases through May 2023 for endometriosis patients who had an endometrioma surgically removed and didn’t take hormones post surgery. “Twelve of these were RCTs, 11 were prospective cohort studies, and 32 were retrospective studies. Nine RCTs had a low risk of bias. For non-RCTs, only 3 studies had a low risk of bias. Data of 23 studies were pooled in meta-analyses, performed for follow-up periods of 3, 6, 12, and 24 months. These studies showed recurrence rates of 4%, 14%, 17%, and 27%, respectively.”

Surgeon skill matters and can affect your outcome

It’s thought that a lot of disease recurrence likely is disease persistence. Therefore, it’s important to try and get the most complete excision possible, as disease left behind can be a source of continued pain. Surgery is operator dependent, which means that the surgeon’s skills are critical. All surgeons have persistence/recurrence as well as complications. But these rates vary per surgeon and tend to go down with the more experience the surgeon has. 

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 endometriosis, 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.

A study by Roman (a renowned excision surgeon) et al (3), looked at the “long-term risk of repeated surgery in women undergoing complete excision of endometriosis by an experienced surgeon and to identify circumstances leading up to repeat surgery.” It followed 1,029 patients who were operated on by Horace Roman, a renowned excision surgeon, and found that the probability of requiring repeated surgery at 1, 3, 5, 7, and 10 years was 3%, 11%, 18%, 23%, and 28%, respectively. In their study, most of the patients (but not all) who needed repeat surgery had it for pain or disease recurrence. This study looked at reoperation rate and not recurrence, and it’s likely that the percentages of patients that have pain or symptoms are higher than the reoperation rate, since not everyone will seek surgical care for their symptoms. However, these numbers are still very promising to show that not all patients will need repeated surgical intervention.