That Recurring Feeling
Treatment of endometriosis is not an exact science. A medication that works well to relieve the symptoms for one person, may have no effect on other person. Similarly some people have really bad side effect from a particular medication, whereas other have little or no side effects. This doesn’t just extend to medical therapies; surgical treatment for endometriosis can be hit and miss too.
The most common surgical procedure for endometriosis is the laparoscopy, this allows the surgeon to get a good look at all the organs of the pelvis and identify any endometriosis (although some endometriosis lesions are very small or difficult to spot, so the skill and experience of the surgeon is a factor in diagnostic accuracy). Laparoscopy also provides a good opportunity to surgically remove any endometriosis; again, this isn’t always as simple as it sounds though. Endometriosis can manifest in a number of different ways, so lesions can be small, others are big cysts, and some are nodules buried in the pelvic walls. Therefore it is not uncommon for some bits of endo to go unnoticed during surgery, or might it be possible that even if all visible endo is removed, it can grow back?
The complexity of endometriosis and the difficulty in its diagnosis make studying recurrence quite difficult. Some studies estimated the rate of recurrence to be anywhere between 6% and 67% which is a very large margin. This wide estimate is caused by a number of factors: the skill of the surgeon, the stage of disease, size of lesions, type of lesions, aftercare, medications etc. The type of endometriosis seems to have quite a significant baring on recurrence, for example other studies indicate that 4 years after first surgery, the recurrence of ovarian endometriosis was 25%, but after 8 years it was 42%.
This, or course, leads to the need for multiple surgeries and further suffering for patients with symptom recurrence, but how common is multiple recurrence and the need for further surgeries and for what type of endo? These are some of the questions a new study aims to answer - you can read the full study via this link for free.
The authors of this paper looked at patient records from Switzerland, examining the surgical data for women who had at least one recurrence of endometriosis after being diagnosed with one of three types of endo:
· Superficial endometriosis (endo that occurs on the surface of the pelvic cavity and the organs inside)
· Ovarian endometriosis (endo cysts growing on the ovary)
· Deep infiltrating endometriosis (endo that grows into the tissues of the pelvis)
They then looked to see if they ever had to undergo any more surgeries for endo and what the patients were diagnosed with.
Given that this study only looked at the records of women with at least one recurrence its unsurprising the first recurrence is at 100%, but what is interesting is looking at the numbers on multiple recurrences. Over a third of all women, no matter what type of endo, had two recurrences, and roughly 7-15% had three.
What is also very interesting is the time in between each recurrence.
That’s a very wide range, and it didn’t differ that much between each type of endo. Some other studies suggest that complete removal of all visible endometriosis at surgery is the most effective treatment, and to be fair this is true, but we also have to look at what the follow up was on these studies. For example, you might read a study that says women who had complete removal of endo were all symptom free after 6 months, which is obviously great, but what about after a year? Or five years? Or ten years?
Without extending the range of post-surgical follow up it’s hard to say whether a surgery was successful or not.
We’ve talked about recurrence, but we’ve assumed that the same type of endo recurs (i.e. women diagnosed with superficial endo always have superficial endo when it recurs), but is that really the case? Fortunately we can answer that question.
In this particular study one of the most common forms of endo at recurrence was deep endo. Is it the case that deep endo is easily missed at first surgery? Or does deep endo have the ability to re-grow? Or is deep endo very difficult to remove completely and so the symptoms re-appear and the need for further surgery arises? There could be one answer or many, but we don’t have definite answers to any of these questions because we don’t know enough about the characteristics of endo lesions to say exactly how they behave. One thing we do know is that deep endo often presents with the most severe pain symptoms, so maybe the reason we see most recurrence of deep endo is that pain symptoms are more severe so patients with deep endo are more likely have further surgeries.
This also raises the question of whether endometriosis is a progressive disease or not, i.e. does endo start off in one way (perhaps with a small number of superficial lesions) and then develop over time to more severe endo types (to deep lesions or ovarian cysts). Some studies have shown that ‘less advanced’ stages of endo (i.e. with ovarian cysts and deep endo) are much less common in young women with the disease, so it may be that endo does get worse over time. It’s hard to say for sure because not all endo lesions cause symptoms, so some people might have endo, but no symptoms so they wouldn’t have surgery to confirm a diagnosis. There’s a big disparity then between the recurrence of endometriosis symptomsand the recurrence of endometriosis lesions.
Then there is the issue of post-surgery medication to consider as well – some women will be put on hormone suppressive drugs after surgery, while some may not, some drugs (like GnRH agonists) are more hormonally suppressive than others (like the pill), so we have to take into account drug suppression of endo recurrence as well. Most studies agree though that post-surgery hormone treatment does reduce the risk of disease recurrence, but side effects of some of the harsher drugs will put people off taking them long term.
Overall the picture of symptom recurrence in endometriosis is a complex one. What we can say is that there will always be a risk of symptom recurrence after every surgery, this doesn’t mean that the disease is guaranteed to return, but there is always a risk. Medical therapy can help to reduce that risk, but surgical removal of the disease by a skilled, multidisciplinary team will, for now, be the best course of treatment for any one with endo.
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Title photo by Frank Cone from Pexels