Key facts summarized
- Endometriosis excision surgery is currently the only proven treatment that reliably and effectively eradicates the disease. In the vast majority of patients, excision is a curative procedure i.e. after the procedure the disease is eradicated and does not recur. Women who undergo complete excision of their endometriosis can remain disease free for the rest of their lives.
- No miracle pill, diet or hormone therapy exists that cures endometriosis. Hormones, dietary adjustments, supplements, and herbal remedies can at best result in a reduction in symptoms. They do not resolve the disease itself and if the therapy is discontinued the symptoms will typically return in full force in a short period of time. Non-invasive treatments are at best palliative – they help manage the symptoms of the disease but do not cure the disease.
- Endometriosis excision surgery will treat the lesions of endometriosis and the pain associated with these lesions. It does not, however, treat other conditions that may co-occur or even result from endometriosis. Symptoms arising from these related conditions may persist despite excision surgery and may require additional treatments in order to restore a patient back to optimal health. For some of these conditions, continued care may be required.
“Endometriosis” and “cure” are rarely seen together in the same sentence. After all, endometriosis is supposed to be a chronic recurrent disease that always comes back, and for many patients, this mantra is borne out in their personal experience with the disease; they undergo repeated failed surgeries and hormone therapies without relief or at best any relief is short-lived and the same old symptoms recur within time.
To confuse matters, endometriosis and pelvic pain are often treated as being synonymous. If the pain returns following previous treatment the patient and her doctor may inadvertently assume that this is an indication of the return of the disease. Pelvic pain, however, is frequently multifactorial in nature, which means the return or persistence of pelvic pain symptoms may not necessarily point to recurrence of previously diagnosed endometriosis. Endometriosis may end up being blamed for other related gynecological conditions that often co-exist with it, such as adenomyosis, pelvic floor dysfunction, adhesion-related pain and interstitial cystitis (painful bladder syndrome).
So, as you can see, the question as to whether or not endometriosis has a cure is far from straightforward!
What do we even mean by “cure”?
The medical definition of endometriosis is the presence of ectopic endometrial glands and stroma (said simply, it is the presence of endometrial-like tissue outside the uterus). This definition refers to the actual physical presence of endometriotic lesions but says nothing about the pattern of associated conditions that often co-occur with endometriosis nor of the potential further-reaching effects of the disease on other body systems, such as the gastrointestinal, immune and nervous systems. The medical definition of cure is the absence of a disease following treatment.
So, when talking of cure of endometriosis, according to these medical definitions we are in fact asking whether the endometriotic lesions can be fully eradicated without disease recurrence further along the line. As can be derived from our surgical success rates, recurrence following wide excision by a surgical specialist is uncommon. The vast majority of patients do not experience recurrence of their disease following surgery. These findings are supported by clinical data involving hundreds of patients and are in line with other surgeons around the world who are using the same technique with a similar level of skill. Essentially, endometriosis excision is a highly effective and curative procedure in most cases.
What about disease recurrence despite excision?
In a minority of patients, the disease does recur. Most cases of recurrence are not in fact true recurrence but are in fact disease persistence. It is far more common for an area of disease to be missed or only partially removed than for new disease to occur and most cases of “recurrent” endometriosis after surgery are examples of disease persistence due to incomplete removal of the disease. In such cases, thorough excision of all remaining disease will provide ongoing resolution of the disease. The problem of incomplete surgery lies at the heart of the belief that endometriosis is an incurable disease that always comes back. This is why patients who find themselves on a seemingly never-ending carousel of repeated surgeries should start questioning how complete their surgery has been and whether their surgeon is sufficiently skilled to offer them optimal surgical care.
In rare cases, however, the disease may recur despite thorough excision surgery. Clinical observations made during second look procedures reveal that recurrence following excision surgery tends to occur at the margins of previous areas of excision. It is far less common for the disease to recur in new sites. Furthermore, recurrent disease tends to be more limited in presentation than the original manifestation of the disease (women with recurrent disease typically have less disease than at the time of their first surgery and recurrent disease is superficial). One possible explanation for the patterning of recurrence at the margins of previously excised areas is that the healing process itself may trigger vulnerable tracts of tissue that contain a latent potential to become endometriosis to then transform into new areas of subtle disease in some patients. Performing excision with wide margins around the areas of visible disease can help reduce the risk of recurrence.
The youngest patients may be at greater risk of disease recurrence although the data are mixed. A recent study found no recurrence in a small series of teenage patients following broad excision. Younger patients may present with more subtle presentations of the disease that are easier to overlook or areas of healthy appearing tissue may still harbor a latent potential to subsequently transform into endometriosis through a process of metaplasia (where one tissue type transforms into another tissue type). It is therefore important to treat endometriosis in teenagers with broad excision to minimize the risk of the patient later having to return for further surgery. Even in teenagers, most patients will experience complete and ongoing resolution of their disease following a single surgical excision procedure.
The sites in the body most likely to undergo “recurrence” following surgery are in fact the ovaries. In the case of ovarian disease deep within the ovarian tissue, it may be difficult if not impossible to detect small focal areas of disease during surgery. Ovarian endometriomas can be excised but sometimes a patient will have other small areas of disease within the ovary that are only detected if they later develop into new endometriomas. The rate of recurrence following excision of an endometrioma (cystectomy) is estimated to be around 5%. Obviously, the risk of recurrence varies depending on the skill of the surgeon.
Recurrence of deep disease is extremely rare. If an area of deep endometriosis is found following previous surgery it is highly likely that the initial surgery failed to completely remove the lesion.
Will removal of my endometriosis cure me of all my symptoms?
This is an important question. The lesions present in the pelvis may only represent half of the picture. Is endometriosis “just” about the lesions or is it more complex than that? The disease process itself (chronic pelvic pain and inflammation) and the underlying factors that determine which women ultimately develop the disease may also result in wider system dysfunction that persists even after the lesions themselves have been meticulously removed. In many cases, endometriosis may present as a multi-systemic “syndrome” of deficits extending far beyond the pelvic cavity. A comprehensive integrative approach may be required in order to restore optimal health. In short, surgery can remove the lesions but other treatments and therapies may be required to address other symptoms indirectly associated with endometriosis.
What does it mean to be “fighting for a cure”?
If endometriosis can be effectively surgically removed with little risk of recurrence, why are endometriosis advocates fighting for a cure? While surgical treatment offers curative resolution of the disease there is currently no way of preventing the development of the disease in the first place and many women experience a long and painful diagnostic delay and rounds of ineffective treatment before accessing optimal care. There is no non-invasive diagnostic test for endometriosis nor a non-invasive curative treatment. What we really should be fighting for is improved access to care, new treatment options, earlier diagnosis, and ultimately a way of stopping the disease in its tracks before it has a chance to debilitate lives. We should be fighting for a prevention.