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The clinician's view of endometriosis
International Journal of Gynecology & Obstetrics 64 Suppl. 1 Ž1999. S1]S3
Introduction
The clinician’s view of endometriosis E.J. Thomas1 Uni¨ ersity of Southampton Medical School, Southampton, UK
Abstract Clinicians have a number of unmet needs regarding the diagnosis and management of endometriosis. The fulfilment of these would result in better advice for patients. Q 1999 International Federation of Gynecology and Obstetrics Keywords: Endometriosis; Management; Diagnosis; Perceptions
At a satellite symposium to the VIth World Congress on Endometriosis, held from 30 June to 4 July 1998 in Quebec City, Canada, clinicians were asked to ‘Zone in on Endometriosis’ and consider the crucial management issues facing both themselves and their patients. Endometriosis is classically defined as the presence of ectopic endometrium, but this histologic view does not fulfil the criteria for a disease. Accordingly, the definition has been extended to include evidence of cellular activity in the lesion and of progression, for example the formation of adhesions and interference with physiological processes w1x. In practical terms, however, endometriosis is defined by the symptoms associated with it, and the aim of management is to alleviate these symptoms. The ultimate goal of physicians managing en-
1
Princess Anne Hospital, Obstetrics and Gynaecology, Coxford Road, Southhampton, UK. Tel.: q44 1703 796044; fax: q44 1703 786933.
Table 1 Patients’ experiences of management of their endometriosis w2x v v v v
v
The mean time to diagnosis was 9.28 years 79% of patients were unable to continue their normal work 71% rated their pain as moderate to severe 45% of patients were seen more than five times by a physician before diagnosis The delay in reaching a specialist consultation averaged 4.67 years
dometriosis is, as for any other disease, to fulfil the needs of patients. With this in mind, a recent survey of patients’ experiences of the management of their endometriosis provides disturbing findings ŽTable 1., w2x. These data highlight the fact that at the moment clinicians are not necessarily optimizing the management of endometriosis from the patient’s point of view. This may be related to a number of issues that were discussed at the satellite symposium. It has already been pointed out that the defini-
0020-7292r99r$19.00 Q 1999 International Federation of Gynecology and Obstetrics. PII: S 0 0 2 0 - 7 2 9 2 Ž98. 0 0 2 3 5 - 5
S2
E.J. Thomas r International Journal of Gynecology & Obstetrics 64 Suppl. 1 (1999) S1᎐S3
tion of endometriosis presents difficulties, and that the classic definition is not adequate. Attempts are currently under way to produce a comprehensive definition that will include all aspects of the disease. In addition, the prevalence of endometriosis is largely unknown. Overall figures ranging from 6 to 44% have been suggested w3x, but the prevalence varies in different groups of women, rising from 2.5᎐5.9% in fertile premenopausal women w4,5x to 20᎐50% in infertile women w6᎐8x. Only 2᎐4% of women who require laparoscopy for endometriosis are postmenopausal w9,10x, most of them having received estrogen replacement therapy w11x. One of the difficulties in determining the prevalence of the disease in the general population is that laparoscopy or surgery is needed to make a definitive diagnosis. As the prevalence of endometriosis is not known with certainty, we have no knowledge of the real economic and healthcare costs involved. These encompass not only direct costs, but also the emotional and psychological costs related to loss of work days and damage done to personal relationships. Another problem facing the clinician is that it is still unclear whether endometriosis should be regarded as a chronic, recurring disease or as one that we can cure. Related to this are the issues of how many diseases are grouped under the umbrella of ‘endometriosis’, whether minimal disease should be regarded as physiological or pathological and whether recurrence is inevitable. Evidence suggests that the current treatment pathway for endometriosis typically involves a diagnostic delay of up to 7 years for people suffering from a debilitating and painful disease, and that then patients no longer trust the advice they receive or the healthcare professional giving it. It is not clear whether the progression of endometriosis is inevitable or the result of poor management, or whether clinicians fail to achieve adequate symptom control and cause continued infertility by failing to deal effectively with this disease. Lastly, I would highlight again the cost to our patients in its totality. At the present time, it is considered necessary to confirm the diagnosis of endometriosis by laparoscopy, but we should ask ourselves whether
Table 2 A clinician’s perspective of endometriosis: unmet needs 䢇 䢇 䢇 䢇 䢇 䢇
Contract between woman and healthcare professional Provision of long-term medical treatment Greater knowledge of disease evaluation Decreased delay in initial diagnosis and treatment Sustained pelvic pain control Lower recurrence rates
this is necessary. How many physicians, for example, have, on examination, found tender nodules on the uterosacral ligaments that have proved to be anything other than endometriosis? The total reliance on laparoscopy to the exclusion of all other diagnostic criteria may delay a patient’s access to treatment. In addition, it should be remembered that many patients have had five or more laparoscopies before diagnosis is confirmed. The issue of pelvic pain is also a critical one. Pelvic pain must be recognized as multifactorial, and clinicians need to take a broad view of it. It can be difficult to control, its differential diagnosis can be extremely difficult and its management complex, yet it is one of the symptoms that most directly affects patients. From the clinician’s perspective, therefore, there are a number of unmet needs ŽTable 2.. A more explicit contract between the woman and the healthcare professional entails agreeing a treatment pathway, planning for all contingencies for the individual patient. This necessarily means that the healthcare professional has to increase their knowledge of endometriosis. The delay in initial diagnosis implies that more education is needed within the primary care sector. In questioning the current approaches to endometriosis, we should ask whether the treatments offered fulfil the needs of both the women and the healthcare professional, and whether the way in which endometriosis is managed depends on the clinician seen by the woman and hisrher knowledge of pelvic pain control. The role of laparoscopy should also be considered, as should the side-effects of the available drugs. These side effects must be put in perspective, and the clinician should assess whether they are worse than believed but women put up with them because endometriosis is so painful, or whether the drugs
E.J. Thomas r International Journal of Gynecology & Obstetrics 64 Suppl. 1 (1999) S1᎐S3
are well tolerated with side effects that should not be stressed too strongly. Finally, we must consider whether the treatment we offer is evidence based. The satellite symposium addressed the needs of a healthcare professional who is well informed about endometriosis and who can ensure that the patient is fully engaged in the management of her disease. The important need for an evidencebased treatment pathway for pain and infertility was also recognized, and long-term medical management was discussed as an important therapeutic approach in this chronic recurrent disease. Currently, the addition of add-back hormone replacement therapy to a course of gonadotrophinreleasing hormone agonists may be one mechanism for longer term therapy, but in the future new possibilities may be provided by anti-estrogens and aromatase inhibitors. The aim of the meeting was to define a clearer structure around which the clinician can advise patients with endometriosis. References w1x Audebert A, Backstrom ¨ ¨ T, Barlow D. Endometriosis, 1991: a discussion document. Hum Reprod 1992;7: 432᎐435.
S3
w2x Endometriosis Association. North American Member Survey, 1998. w3x Vercellini P, Crosignani PG. Epidemiology of endometriosis. In: Brosens I, Donnez J, editors. The Current Status of Endometriosis. Carnforth, UK: Parthenon Publishing, 1993: 111᎐130. w4x Drake TS, Grunert GM. The unsuspected pelvic factor in the infertility investigations. Fertil Steril 1980;34: 27᎐32. w5x Strathy JH, Molgaard CA, Coulam CB, Melton LJ. Endometriosis and infertility: a laparoscopical study of endometriosis among fertile and infertile women. Fertil Steril 1982;38:667᎐672. w6x Peterson EP, Behrman SJ. Laparoscopy of the infertile patient. Obstet Gynecol 1970;36:363᎐367. w7x Goldeneberg RL, Magendantz HG. Laparoscopy and the infertility evaluation. Obstet Gynecol 1976;47: 410᎐414. w8x Hasson HM. Incidence of endometriosis in diagnostic laparoscopy. J Reprod Med 1976;16:135᎐138. w9x Kempers RD, Dockerty MB, Hunt AB, Symmonds RE. Significant postmenopausal endometriosis. Surg Gynecol Obstet 1960;111:348᎐356. w10x Punnonen R, Klemi PJ, Nikkanen V. Postmenopausal endometriosis. Am J Obstet Gynecol Reprod Biol 1980;11:195᎐200. w11x Djursing H, Petersen K, Weberg E. Symptomatic postmenopausal endometriosis. Acta Obstet Gynecol Scand 1981;60:529᎐530.
Introduction
The clinician’s view of endometriosis E.J. Thomas1 Uni¨ ersity of Southampton Medical School, Southampton, UK
Abstract Clinicians have a number of unmet needs regarding the diagnosis and management of endometriosis. The fulfilment of these would result in better advice for patients. Q 1999 International Federation of Gynecology and Obstetrics Keywords: Endometriosis; Management; Diagnosis; Perceptions
At a satellite symposium to the VIth World Congress on Endometriosis, held from 30 June to 4 July 1998 in Quebec City, Canada, clinicians were asked to ‘Zone in on Endometriosis’ and consider the crucial management issues facing both themselves and their patients. Endometriosis is classically defined as the presence of ectopic endometrium, but this histologic view does not fulfil the criteria for a disease. Accordingly, the definition has been extended to include evidence of cellular activity in the lesion and of progression, for example the formation of adhesions and interference with physiological processes w1x. In practical terms, however, endometriosis is defined by the symptoms associated with it, and the aim of management is to alleviate these symptoms. The ultimate goal of physicians managing en-
1
Princess Anne Hospital, Obstetrics and Gynaecology, Coxford Road, Southhampton, UK. Tel.: q44 1703 796044; fax: q44 1703 786933.
Table 1 Patients’ experiences of management of their endometriosis w2x v v v v
v
The mean time to diagnosis was 9.28 years 79% of patients were unable to continue their normal work 71% rated their pain as moderate to severe 45% of patients were seen more than five times by a physician before diagnosis The delay in reaching a specialist consultation averaged 4.67 years
dometriosis is, as for any other disease, to fulfil the needs of patients. With this in mind, a recent survey of patients’ experiences of the management of their endometriosis provides disturbing findings ŽTable 1., w2x. These data highlight the fact that at the moment clinicians are not necessarily optimizing the management of endometriosis from the patient’s point of view. This may be related to a number of issues that were discussed at the satellite symposium. It has already been pointed out that the defini-
0020-7292r99r$19.00 Q 1999 International Federation of Gynecology and Obstetrics. PII: S 0 0 2 0 - 7 2 9 2 Ž98. 0 0 2 3 5 - 5
S2
E.J. Thomas r International Journal of Gynecology & Obstetrics 64 Suppl. 1 (1999) S1᎐S3
tion of endometriosis presents difficulties, and that the classic definition is not adequate. Attempts are currently under way to produce a comprehensive definition that will include all aspects of the disease. In addition, the prevalence of endometriosis is largely unknown. Overall figures ranging from 6 to 44% have been suggested w3x, but the prevalence varies in different groups of women, rising from 2.5᎐5.9% in fertile premenopausal women w4,5x to 20᎐50% in infertile women w6᎐8x. Only 2᎐4% of women who require laparoscopy for endometriosis are postmenopausal w9,10x, most of them having received estrogen replacement therapy w11x. One of the difficulties in determining the prevalence of the disease in the general population is that laparoscopy or surgery is needed to make a definitive diagnosis. As the prevalence of endometriosis is not known with certainty, we have no knowledge of the real economic and healthcare costs involved. These encompass not only direct costs, but also the emotional and psychological costs related to loss of work days and damage done to personal relationships. Another problem facing the clinician is that it is still unclear whether endometriosis should be regarded as a chronic, recurring disease or as one that we can cure. Related to this are the issues of how many diseases are grouped under the umbrella of ‘endometriosis’, whether minimal disease should be regarded as physiological or pathological and whether recurrence is inevitable. Evidence suggests that the current treatment pathway for endometriosis typically involves a diagnostic delay of up to 7 years for people suffering from a debilitating and painful disease, and that then patients no longer trust the advice they receive or the healthcare professional giving it. It is not clear whether the progression of endometriosis is inevitable or the result of poor management, or whether clinicians fail to achieve adequate symptom control and cause continued infertility by failing to deal effectively with this disease. Lastly, I would highlight again the cost to our patients in its totality. At the present time, it is considered necessary to confirm the diagnosis of endometriosis by laparoscopy, but we should ask ourselves whether
Table 2 A clinician’s perspective of endometriosis: unmet needs 䢇 䢇 䢇 䢇 䢇 䢇
Contract between woman and healthcare professional Provision of long-term medical treatment Greater knowledge of disease evaluation Decreased delay in initial diagnosis and treatment Sustained pelvic pain control Lower recurrence rates
this is necessary. How many physicians, for example, have, on examination, found tender nodules on the uterosacral ligaments that have proved to be anything other than endometriosis? The total reliance on laparoscopy to the exclusion of all other diagnostic criteria may delay a patient’s access to treatment. In addition, it should be remembered that many patients have had five or more laparoscopies before diagnosis is confirmed. The issue of pelvic pain is also a critical one. Pelvic pain must be recognized as multifactorial, and clinicians need to take a broad view of it. It can be difficult to control, its differential diagnosis can be extremely difficult and its management complex, yet it is one of the symptoms that most directly affects patients. From the clinician’s perspective, therefore, there are a number of unmet needs ŽTable 2.. A more explicit contract between the woman and the healthcare professional entails agreeing a treatment pathway, planning for all contingencies for the individual patient. This necessarily means that the healthcare professional has to increase their knowledge of endometriosis. The delay in initial diagnosis implies that more education is needed within the primary care sector. In questioning the current approaches to endometriosis, we should ask whether the treatments offered fulfil the needs of both the women and the healthcare professional, and whether the way in which endometriosis is managed depends on the clinician seen by the woman and hisrher knowledge of pelvic pain control. The role of laparoscopy should also be considered, as should the side-effects of the available drugs. These side effects must be put in perspective, and the clinician should assess whether they are worse than believed but women put up with them because endometriosis is so painful, or whether the drugs
E.J. Thomas r International Journal of Gynecology & Obstetrics 64 Suppl. 1 (1999) S1᎐S3
are well tolerated with side effects that should not be stressed too strongly. Finally, we must consider whether the treatment we offer is evidence based. The satellite symposium addressed the needs of a healthcare professional who is well informed about endometriosis and who can ensure that the patient is fully engaged in the management of her disease. The important need for an evidencebased treatment pathway for pain and infertility was also recognized, and long-term medical management was discussed as an important therapeutic approach in this chronic recurrent disease. Currently, the addition of add-back hormone replacement therapy to a course of gonadotrophinreleasing hormone agonists may be one mechanism for longer term therapy, but in the future new possibilities may be provided by anti-estrogens and aromatase inhibitors. The aim of the meeting was to define a clearer structure around which the clinician can advise patients with endometriosis. References w1x Audebert A, Backstrom ¨ ¨ T, Barlow D. Endometriosis, 1991: a discussion document. Hum Reprod 1992;7: 432᎐435.
S3
w2x Endometriosis Association. North American Member Survey, 1998. w3x Vercellini P, Crosignani PG. Epidemiology of endometriosis. In: Brosens I, Donnez J, editors. The Current Status of Endometriosis. Carnforth, UK: Parthenon Publishing, 1993: 111᎐130. w4x Drake TS, Grunert GM. The unsuspected pelvic factor in the infertility investigations. Fertil Steril 1980;34: 27᎐32. w5x Strathy JH, Molgaard CA, Coulam CB, Melton LJ. Endometriosis and infertility: a laparoscopical study of endometriosis among fertile and infertile women. Fertil Steril 1982;38:667᎐672. w6x Peterson EP, Behrman SJ. Laparoscopy of the infertile patient. Obstet Gynecol 1970;36:363᎐367. w7x Goldeneberg RL, Magendantz HG. Laparoscopy and the infertility evaluation. Obstet Gynecol 1976;47: 410᎐414. w8x Hasson HM. Incidence of endometriosis in diagnostic laparoscopy. J Reprod Med 1976;16:135᎐138. w9x Kempers RD, Dockerty MB, Hunt AB, Symmonds RE. Significant postmenopausal endometriosis. Surg Gynecol Obstet 1960;111:348᎐356. w10x Punnonen R, Klemi PJ, Nikkanen V. Postmenopausal endometriosis. Am J Obstet Gynecol Reprod Biol 1980;11:195᎐200. w11x Djursing H, Petersen K, Weberg E. Symptomatic postmenopausal endometriosis. Acta Obstet Gynecol Scand 1981;60:529᎐530.