Over the years I have unfortunately seen multiple people who have had a large number of laparoscopies before finally having definite surgery. The most recent was a 37 year old woman with severe endometriosis who had had at least 12 laparoscopies and several cycles of IVF all of which were unsuccessful before finally having excision of a large 5 cm solid nodule of endometriosis densely adherent to the posterior uterus, cervix and rectum. Happily her symptoms have improved and if she does not conceive spontaneously over the next few months we will then consider a repeat cycle of IVF.
My concern is there appears to have been a significant delay in the appropriate management of this patient with a clear detrimental effect on her fertility prospects and a significant amount of time that her quality of life has been tremendously impaired. The financial burden is yet another issue. Once a diagnosis of severe endometriosis has been made it is does not make sense to keep doing diagnostic laparoscopies or performing surgery without the prospect of being able to adequately clear the disease particularly if a multi-speciality surgical team is required. It seems to me that many patients have multiple laparoscopies that are often diagnostic with minimal actual surgery performed and then unknowingly consider this to be some form of treatment when in fact this is not the case. This is exacerbated when different surgeons perform the procedures particularly when they have no images of the situation at the preceding surgery. At the severe stage endometriosis can be exceedingly difficult to treat and it is somewhat extraordinary that earlier surgeons have not appreciated what they were looking at or failed to consider referral to a specialist unit with appropriate skills and expertise. This has resulted in a widely held view that endometriosis always comes back and that surgery is often futile.
Even within our own specialty there appears to be a lack of understanding (and probably recognition) of advanced endometriosis as the letter below shows in response to a paper we published recently (the surgeon claims to have seen only one severe case of endometriosis involving the bowel in over 41 years – my view is that he may often not have realized what he was looking at. The response follows).
Increasingly the data show that good excisional surgery preferably in dedicated units when the disease is severe and when combined with either pregnancy or endometrial suppression ideally with Mirena results in good long term outcomes. Repeat surgery and multiple laparoscopies to the extent described above should not be tolerated.
We read with great interest the article on the above by Wills et al.,1 because of the rarity of the need for bowel resection for endometriosis. One of us (GD) has only had one such case in 41 years of specialist practice and that was required for obstruction. However, we realise that many of these patients may take themselves directly to specialised units or colorectal surgeons and bypass the gynaecologist. We were also surprised to read the statement in the introduction: ‘As medical treatment is usually unsuccessful …’ attributed to Thomassinet al.
Thomassin et al. based this unsubstantiated statement on their own 27 patients. Their ‘medical therapy’ had consisted of ‘GnRH analogues’ for at least 3 months ‘in all of the women’, ‘progestins’ in 1% and danazol in one patient, the latter two treatments used for an unspecified period. Those who share the concept that the severity of endometriosis is related to the number of ovulations, will agree that 3 months of medical treatment is unlikely to achieve much. Medical therapy is usually required over much longer periods, but may provide very effective relief even from symptoms of severe, deep, infiltrating endometriotic disease.
At the same conference in which Wills’ work was presented, a poster2 was exhibited showing that Depo Provera (DMPA) is successful in relieving the pain of endometriosis in all but one of 39 women treated with DMPA alone, with no significant complications. Surprisingly, Wills does not state the rate of pain relief in their series even though pain was the commonest reason (79.1%) for performing the procedure. However, they did have 16 ‘unintended events’, including three ileostomies.
The commonest objection to the long-term use of DMPA is decreased bone mineral density (BMD). We expect to publish data soon showing that this either does not occur or is not of clinical significance, even when DMPA has been used for over 20 years. Four well-recognised professional organisations (World Health Organisation, The Society for Adolescent Medicine, The Society of Obstetrics and Gynaecology of Canada and The American College of Obstetrics and Gynaecology) have advocated the safety of DMPA. These organisations have agreed that ‘there should not be any restriction on the use of DMPA’ and that ‘the advantages of using DMPA generally outweigh the theoretical safety concerns regarding fracture risk’. In 2009, a further consensus meeting was called by the National Institute of Public Health of Quebec in Canada. This meeting reviewed the literature and agreed that DMPA use should not be restricted, BMD should not be monitored and routine treatment with vitamin D and calcium should not be instigated solely because a woman is using DMPA.
We still have much to learn about the optimal management of endometriosis, be it medical or surgical. It is an unusually difficult area for controlled trials, but this research technique is likely to be the best way forward.
With respect, Dennerstein1 raises two issues with our paper.2
Firstly, he appears to consider the necessity for bowel resection in cases of endometriosis involving the bowel is rare. We disagree.
Such cases are being increasingly reported. Since 2008, Medline lists at least 45 publications with reference to bowel resection and endometriosis. The issue is of sufficient significance that institutions from the UK, Europe and the USA have written on the benefits of treating deep invasive endometriosis in specialised units with access to multi-specialty surgical expertise, particularly colo-rectal surgeons.3
Whilst we acknowledge that definitive data on the treatment of colo-rectal endometriosis are lacking, increasing evidence from around the world points to the benefits of an individualised approach and increasingly, surgical intervention, particularly for those wishing to conceive. Aggressive surgical intervention incorporating bowel resection, in those patients where it is appropriate, appears to significantly decrease pain scores and lower recurrence rates4 and enhance pregnancy prospects (both spontaneous and via assisted conception). Endometriosis has a stage-related effect on fertility. Unsurprisingly, the removal of significant disease (including bowel involvement) dramatically improves pregnancy prospects. Our data, presented at the World Conference on Endometriosis in 2008, revealed a 60% pregnancy rate in a profoundly infertile population following bowel resection.5 Two further studies published during 2009 have demonstrated pregnancy rates very similar to our data, in support of our approach.6,7 We agree further controlled trials will be unusually difficult, to the extent they are unlikely to be performed.
Secondly, Dennerstein postulates that medical management with DMPA is a superior alternative in management for (presumably) most women. Again, we disagree.
DMPA may be a useful adjunct to a management plan for endometriosis, although is only of use in those patients who do not wish to conceive and are happy to maintain compliance with three monthly injections. Bone loss, which may be at least partially reversible, remains a concern for many. These issues are illustrated coincidentally and strikingly in a report in the same edition of the Journal as Dennerstein’s letter.8 In that randomised controlled trial for moderate to severe endometriosis comparing DMPA to Mirena, less than half of the DMPA group remained on therapy for 3 years. Additionally, bone loss was a significant finding in the DMPA group.
In the 41 years of Dennerstein’s practice, the age of menarche has dropped, whilst the age at first conception has increased. His view that endometriosis may be linked to the ‘number of ovulations’ may have some validity and would support the notion of increased prevalence and severity. We postulate that if Dennerstein were to continue in practice for another 41 years, it is highly likely he would see more cases of bowel endometriosis and DMPA is unlikely to be the answer for many of those women.