Endometriosis morbidity: can it be prevented with early diagnosis and complete excision?

By Lone Hummelshoj

The problem of endometriosis

Despite the well-recognised symptoms and/or early warning signs of endometriosis, we continue to see so many challenges associated with the disease.

The purpose of this article is to explore the potential benefits of an early diagnosis and consequent surgical treatment of this prevalent disease.

Endometriosis is an under-diagnosed and under-treated problem

It is estimated that 1 in every 10 women have endometriosis during their reproductive years [1]. In adolescents, the rate of endometriosis found in young women with chronic pelvic pain is staggering – yet multi-country studies indicate that there is a significant delay – between 7 to 12 years – in the diagnosis of endometriosis, from the time of onset of symptoms suggestive of endometriosis to the gold standard surgical diagnosis [2,3].

The problem is that endometriosis not only causes pelvic pain but also negatively affects fertility, can progress over time [4,5], and often pain is the only herald of the disease.

The role of hormonal suppression in treating endometriosis

Empiric therapy, such as a gonadotropin-releasing hormone agonists like Lupron®, is often used for both diagnosis and therapy [6]. However, the presence of endometriosis is the same (up to 80%) whether or not a patient responds to empiric therapy [7], and hormonal suppression can have untoward side effects, such as bone loss, severe mood changes, hot flushes, and memory loss.

The American College of Obstetrics and Gynecology (ACOG) states clearly: “It is important to explain to patients that response to empiric therapy does not confirm the diagnosis of endometriosis” [8] (italics added).  In other words: there is no proof that ‘empiric therapies’ have any benefit other than temporary symptom palliation.

Another ‘presumptive use’ of hormonal suppression is to prevent progression of disease, with or without surgery. However, studies have indicated that the rate of recurrence after ablation of endometriosis is about the same whether or not postoperative hormones are used [9].

Further, recent studies by Professor Charles Chapron [10,11] have shown that the need for birth control pills to treat pain and school absenteeism can be a marker for advanced disease. This data implies that hormonal suppression is not very effective in preventing progression of endometriosis.

Finally, temporary hormonal suppression has been tried as an attempt to improve future fertility. It was thought that suppressing endometriosis now could be helpful in improving fertility potential later. However, this has not been shown to be true [12]. There has not been improvement demonstrated for fertility with temporary hormonal suppression of endometriosis.

The role of surgery in treating endometriosis

The gold standard for the diagnosis of endometriosis is laparoscopy [8] (or ‘keyhole’ surgery), with biopsy of lesions. Surgery also allows for “see and treat” laparoscopy [13], so the disease can be diagnosed and treated at the same time.

Laparoscopic surgery for endometriosis has been shown to be beneficial for both pain and fertility [14,15]. There is some debate as to which technique should be used to treat endometriosis – ablation (or trying to destroy the lesions with energy, which is what most do) versus excision (or cutting out the lesions, generally requiring more training and skill).

Can endometriosis be eradicated?

For the most optimal results, in our opinion, excision of all visible disease must be achieved, which depends on two important factors:

1. identifying all forms of the disease – including both its typical and atypical or subtle forms [16], and
2. completely removing the disease wherever it is found (excision).

Co-author Assistant Professor Patrick Yeung Jr, Saint Louis University

We published a study [17] recently, which is the largest prospective study of excision in teenagers.

The majority of the women had received previous hormonal treatments, previous (sometimes multiple) surgeries by ablation, and had an “awful” or “poor” quality of life.

All the teenagers received “complete excision” (defined as above) by an expert and experienced surgeon. They were followed for up to 5 years, the mean interval being 2 years. Overall the pain scores and quality of life (perhaps more importantly) improved significantly. The rate of recurrent or persistent endometriosis on second-look laparoscopy was zero.

This data indicates that complete excision is an important part of the management plan for pain. More importantly perhaps, is the implication that there is a potential for complete eradication of disease.

Does ‘invisible endometriosis’ exist?

Co-author Dr Ken Sinervo, Center for Endometriosis Care

Some have been critical of our conclusions, stating that ‘complete excision’ cannot be achieved because invisible endometriosis, or microscopic disease, may exist [18].

We do not claim that surgery is always a ‘cure’ for endometriosis, nor that the disease cannot recur or be overlooked. However, we do believe that who performs the surgery and how it is performed impacts both the long and the short term success of surgical treatment.

On the other hand, modern-day optics at laparoscopy and a well-trained eye have allowed the disease to be detected or seen in a way that has not been possible before [19]. Moreover, an expert surgeon can be expected to remove detectable disease in its entirety, even when found over vital organs.

Taken together, the data suggests that there is a potential to remove all relevant disease.

The potential benefit of early diagnosis and complete excision

Co-author Dr Robert Albee Jr, Center for Endometriosis Care

The data discussed above indicates that early diagnosis and complete excision is the best way to improve quality of life, and perhaps to prevent progression of endometriosis and thereby benefit long-term fertility.

However, further systematic, multi-centre and longer-term studies are needed to confirm this hypothesis.

References

1. Rogers PA, D’Hooghe TM, Fazleabas A, et al. Priorities for endometriosis research: recommendations from an international consensus workshop. Reprod Sci 2009;16:335-46.
2. Nnoaham KE, Hummelshoj L, Webster P, et al. Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries. Fertil Steril 2011;96:366-73 e8.
3. Hadfield R, Mardon H, Barlow D, Kennedy S. Delay in the diagnosis of endometriosis: a survey of women from the USA and the UK. Human Reproduction 1996;11:878-80.
4. Koninckx PR, Meuleman C, Demeyere S, Lesaffre E, Cornillie FJ. Suggestive evidence that pelvic endometriosis is a progressive disease, whereas deeply infiltrating endometriosis is associated with pelvic pain. Fertil Steril 1991;55:759-65.
5. ACOG Committee Opinion. Number 310, April 2005. Endometriosis in adolescents. Obstet Gynecol 2005;105:921-7.
6. Ling FW. Randomized controlled trial of depot leuprolide in patients with chronic pelvic pain and clinically suspected endometriosis. Pelvic Pain Study Group. Obstet Gynecol 1999;93:51-8.
7. Jenkins TR, Liu CY, White J. Does response to hormonal therapy predict presence or absence of endometriosis? J Minim Invasive Gynecol 2008;15:82-6.
8. Practice bulletin no. 114: management of endometriosis. Obstet Gynecol 2010;116:223-36.
9. Doyle JO, Missmer SA, Laufer MR. The effect of combined surgical-medical intervention on the progression of endometriosis in an adolescent and young adult population. J Pediatr Adolesc Gynecol 2009;22:257-63.
10. Chapron C, Lafay-Pillet MC, Monceau E, et al. Questioning patients about their adolescent history can identify markers associated with deep infiltrating endometriosis. Fertil Steril 2011;95:877-81.
11. Chapron C, Souza C, Borghese B, et al. Oral contraceptives and endometriosis: the past use of oral contraceptives for treating severe primary dysmenorrhea is associated with endometriosis, especially deep infiltrating endometriosis. Hum Reprod 2011;26:2028-35.
12. Falcone T, Lebovic DI. Clinical management of endometriosis. Obstet Gynecol 2011;118:691-705.
13. Ball E, Koh C, Janik G, Davis C. Gynaecological laparoscopy: ‘see and treat’ should be the gold standard. Curr Opin Obstet Gynecol 2008;20:325-30.
14. Jacobson TZ, Barlow DH, Garry R, Koninckx P. Laparoscopic surgery for pelvic pain associated with endometriosis. Cochrane Database of Systematic Reviews 2009;4.
15. Jacobson TZ, Barlow DH, Koninckx PR, Olive D, Farquhar C. Laparoscopic surgery for subfertility associated with endometriosis. Cochrane Database of Systematic Reviews 2010;4.
16. 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;15:32-7.
17. Yeung P Jr, Sinervo K, Winer W, Albee RB Jr. Complete laparoscopic excision of endometriosis in teenagers: is postoperative hormonal suppression necessary? Fertil Steril 2011;95:1909-12.
18. Yeung P, Sinervo K, Winer W, Albee RB. Reply of the Authors. Fertili Steril 2011;96:e146.
19. Redwine DB. ‘Invisible’ microscopic endometriosis: a review. Gynecol Obstet Invest 2003;55:63-7.

See also

• Endometriosis in teenagers
• Current treatments for endometriosis
• How to find a specialist

The author

Lone Hummelshoj is the publisher/editor of www.endometriosis.org. She works globally to raise awareness of the impact of endometriosis, and to secure funds for research to improve knowledge of the disease so that targeted treatments can be developed - with prevention as the ultimate goal!