Excellent question. Unfortunately the current short answer is no. At this point we do not understand how or why somebody gets endometriosis or even what it is. We know there are abnormalities outside the uterus, which is the classical description or diagnosis, but it has only been recently appreciated that there are issues inside the uterus. People with endometriosis have measurable differences in certain proteins within the uterus and for some reason seem to grow nerve fibers inside the uterus whilst those without endometriosis do not.
It seems to me that endometriosis, as well as having a “multifactorial” cause for existence, also has at least two anatomical abnormalities that are completely separate – one inside and the other outside the uterus.
It seems logical, therefore, that if you simply remove the “endometriosis” – or those deposits outside the uterus you are only dealing with part of the problem. I strongly suspect that you also need to manage the issue on the “inside” of the uterus. My preference for this is – in order: pregnancy, Mirena (a progestogen impregnated IUD that “mimics” pregnancy) or the oral contraceptive pill.
Anecdotally it seems to me that you need to do both well – good surgery (which is not easy and has been compared at times to being more difficult than cancer surgery) and also the adjuvant (or follow up) treatment to keep the disease at bay and preserve fertility.
The good news in my experience is that if you do both well, the chance of subsequent surgery is low. Even though we probably can’t “cure” endometriosis, for most people we can dramatically decrease the symptoms so they can live a reasonably normal life.
We have just analysed our data on a subgroup of patients who have been attempting to conceive with severe endometriosis. Three surgeons with similar approaches to the treatment of endometriosis pooled their data and following excisional surgery (including bowel resection) we have an almost 75% chance of pregnancy. I reproduce the data that has been accepted to be presented at the World Congress of Endometriosis later this year below.
The data is in line with many anecdotal reports but has surpassed even our own expectations. Historically the belief has been that if you (unfortunately) have severe endometriosis and it is adequately excised the subsequent pregnancy rates dramatically improve. Conversely if your endometriosis is more minor, and less surgery is required to excise it the results are not as dramatic. Our current results again show extraordinary results with excisional surgery particularly with severe disease.
Clearly there are issues in relation to the degree of endometriosis that you have and the different perceptions of this between surgeons. I liken it to the game of “Chinese whispers”. If I whisper to you what I think is occurring and you then mention it to a number of other people the real story gets lost along the way. This is why images are so important.The experience of the team looking after you is also a significant factor.
I should emphasise that I do not believe the answer to endometriosis is surgery alone. Pregnancy, pseudo-pregnancy (with agents such as Mirena) or ovulation suppression are all critical in the ongoing management of the disorder.
We clearly need (and will) do more data (and life table) analysis, although these results are highly encouraging and I must admit to looking forward to going to the office at the moment….
FERTILITY OUTCOMES AFTER SURGERY FOR COLORECTAL ENDOMETRIOSIS AMONGST A COHORT OF WOMEN PRESENTING WITH INFERTILITY
H. J. Wills 1, M. J. Cooper 2, J. Tsaltas 3, L. Reyftmann 4, G. D. Reid 5,*
1Faculty of Medicine, University of New South Wales, 2Department of Obstetrics and Gynaecology, University of Sydney, Sydney, 3Monash Medical Centre, Melbourne, 4Sydney Women’s Endosurgery Centre, 5Liverpool Hospital, Sydney, Australia
Preferred Presentation Method: Oral or Poster Presentation
Has this abstract previously been presented or published?: No
Introduction: Fertility outcomes following surgery for colorectal endometriosis are an important consideration of the feasibility of such a management approach.
Objectives: To review the fertility outcomes of women who have undergone surgery for colorectal endometriosis with infertility as their primarily reason for initial presentation to a specialist.
Methods: The patient records of 3 gynaecologists were reviewed for patients who underwent 1 or more of segmental resection, disc excision or appendicectomy for endometriosis. Patients who had surgery after 30/08/10 were excluded to allow at least a 6 month follow-up period extending to 28/02/11. The patients’ primary reason for presentation to a specialist was determined. Information surrounding the duration of infertility and pregnancy outcomes after surgery was extracted from the records of those patients presenting with infertility.
Results: Seventy-five women presenting with either infertility (19/75; 25.3%) or pain and infertility (56/75; 74.7%) underwent surgery for colorectal disease. The average age of the cohort at the time of bowel surgery was 34 years and 7 months. Forty-three patients (57.3%) underwent segmental resection and 28 (37.3%) underwent disc excision. Four patients (5.4%) underwent simultaneous bowel procedures. Fertility data was unavailable for 7 women (9.3%).Amongst the 68 available for follow up, 11 women (16.2%) did not wish
to attempt conception post-operatively despite initially presenting with infertility as their primary complaint. This was found to be due to a variety of factors, including a change in circumstances surrounding partners, finances and desire for pregnancy. Fifty-seven women (83.8%) wished to conceive after surgery. Forty-two women successfully conceived, equating to a pregnancy rate of 73.6% (42/57) amongst those women wishing to conceive, and a rate of 61.8% amongst the cohort as a whole (42/68). A total of 54 pregnancies occurred. Fourteen (25.9%) were achieved spontaneously and 37 (68.5%) with assisted reproductive technologies. The mode of conception was unknown in 3 pregnancies (5.6%). The outcomes of 13 pregnancies (24.1%) remain unknown. Fourteen pregnancies (26.0%) resulted in miscarriage. Four pregnancies (7.4%) were on-going at the time of submission. Twenty-three pregnancies (42.53%) were known to have been successfully delivered; 15 by Caesarean section (65.2%), 7 vaginal deliveries (30.4%) and the method of delivery unknown in 1 (4.3%).
The cumulative pregnancy rate observed in this study is in keeping with fertility rates reported in the literature, which according to a recent systematic review, vary between 18% and 100%.1
Conclusion: The pregnancy rate observed in this series is considerably higher than previous studies of a similar nature, suggesting the potentially positive impact of colorectal endometriosis surgery upon fertility in those women with infertility as their primarily reason for presentation.
References: 1. De Cicco, et al. 2011. BJOG 118(3):285-91.
Disclosure of Interest: None Declared
Keywords: colorectal endometriosis, fertility outcomes, laparoscopy
I am often asked by patients who have been diagnosed with severe endometriosis and have been unsuccessfully trying to get pregnant whether it is better to proceed with IVF or surgery. Like all things in medicine – it depends on the individual circumstances. There is fairly clear evidence that endometriosis has a stage related effect on fertility. The worse the endometriosis, the lower your chance of success. The same thing seems to hold true even if you have IVF. In other words if you allow for the stage of disease, people with endometriosis having IVF appear to have lower success rates than people without disease.
The flip side of this is that if you can remove all (or most) of the disease (especially if it is severe) there is a dramatic increase in your 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. Two further studies published during 2009 have demonstrated pregnancy rates very similar to our data, in support of this approach. Clearly age and other factors need to be taken into account here. If your underlying fertility is very low even if it doubles after surgery, the result may still be a low number.
From the perspective of the patient with severe endometriosis attempting to conceive with IVF there are 3 main issues:
1. As noted above the success rates are likely to be limited
2. The stimulation protocol can have the unfortunate effect of stimulating the endometriosis and making symptoms (eg pain) worse
3. If the cul de sac is very involved, the bowel adherent to the posterior aspect of the uterus, or there is a chocolate cyst, there is an increased risk of a pelvic infection or bowel damage at the egg pick up procedure.
I therefore usually suggest to patients that they consider surgery before undertaking IVF. Aggressive surgical intervention incorporating bowel resection if needed, in those patients where it is appropriate, appears to significantly decrease pain scores and lower recurrence rates, and enhance pregnancy prospects (both spontaneous and via assisted conception).
The problem with surgery is that these procedures are not easy and should ideally be treated in specialized units with access to multi-specialty surgical expertise, particularly colo-rectal surgeons. The results in units where few cases are performed are inferior with lower pregnancy rates and higher complications (particularly colostomy).
Depending on the state of the pelvis after the procedure and other factors, (eg age, sperm quality etc) it may then be reasonable to attempt spontaneous conception. For most people if conception has not occurred within 6 to 12 months they will then need to move to IVF.
A few years ago the successful RPA TV program featured one of my patients who happily conceived after endometriosis surgery. You can watch the story here.
It demonstrates what I think many working in the area understand. Bad endometriosis effects your chance of getting pregnant, but somewhat paradoxically, the more severe it is the bigger the improvement in your pregnancy prospects. Put another way, if you are having difficulties conceiving and have endometriosis, you might wish for a severe case, since removing it will have a greater impact.
The difficulty is that this whole area needs a lot more scientific data and analysis.
Clearly there are many factors involved in getting pregnant, not least sperm quality and maternal age. These need to be assessed before making the decision to proceed to surgery.
If your team does decide to operate then the type of surgery is significant. Images and video are important. Most data now supports excising (or removing) the disease rather than simply buring the surface. I like to think of endometriosis as an iceberg so the aim is to remove the whole iceberg rather than leaving the tip. This type of surgery is “operator dependant”. Fairly common sense in that the more experience your surgeon has the better the outcome is likely to be.
Careful individualised consideration of these issues with your medical team is vital to improve your prospects. The ideal situation is to have a team who can provide both quality surgery and assisted conception techniques such as IVF as appropriate. This contrasts with that old conundrum – “if your only solution is a hammer, every problem is a nail”. Sometimes surgery might be the best option, at other times IVF might be preferred and alternatively surgery followed by IVF might be preferable. Finally it is worth contemplating an old surgical maxim – “good surgeons know how to operate, better surgeons know when to operate, the best surgeons know when NOT to operate”
After my recent blog on photos for diagnosis of endometriosis, endometriosis.org directed me to using this technique as a “quality control” for surgery. An excellent idea. In the past we used to do it all the time. The difficulty was storing (and then finding) all those video tapes. My major hospital, RPA, famous for the TV show (which features one of my patients who happily conceived after I removed her endometriosis), has now bought new state of the art digital recording machines. This means that all of the units I operate in have these facilites.
If you are contemplating surgery it is an excellent idea to get a copy of the video. In future, it may save you another laparoscopy!
Unfortunately (and currently for unknown reasons), cases of endometriosis involving the bowel are being increasingly reported. Since 2008, there have been at least 45 publications with reference to bowel resection and endometriosis. The issue is of sufficient significance that institutions from the United Kingdom, Europe and the USA have written on the benefits of treating deep invasive endometriosis in specialized units with access to multi-specialty surgical expertise, particularly colo-rectal surgeons.
Definitive data on the treatment of these bowel cases are lacking, although increasing evidence from around the world point to the benefits of an individualized 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 enhance pregnancy prospects (both spontaneous and via assisted conception), decreases pain scores and lowers recurrence rates. Endometriosis has a stage related effect on fertility. Unsurprisingly, the removal of significant disease (including bowel involvement) dramatically improves pregnancy prospects. Our, admittedly limited and biased data, presented at the World Endometriosis Conference in 2008, reveal a 61% pregnancy rate in an infertile population following bowel resection. Two further studies published during 2009 have demonstrated pregnancy rates very similar to our data, in support of this approach.
This type of surgery should probably be performed in specialised units with access to multiple surgical specialities as needed to clear the disease. I try and keep a track of my complications and recurrence rates although it is a difficult thing to do and caution should be used when interpreting these results.
My suspicion remains, however, that surgery is not the answer to this issue and I would be surprised if we continue to use the same techniques in the years to come.
Wills HJ, Reid GD, Cooper MJ, Tsaltas J, Morgan M, Woods RJ. Bowel resection
for severe endometriosis: an Australian series of 177 cases. Aust.N.Z.J.Obstet.Gynaecol.
2009; 49: 415-8.
Jacobsen T. Endometriosis centres of excellence – developing a consensus definition
World Endometriosis Society e-Journal, Vol 11 No 3 pp 5 – 7.; 2009.
Wills HJ, Reid GD, Cooper MJ, Morgan M. Fertility and pain outcomes following
laparoscopic segmental bowel resection for colorectal endometriosis: a review.
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Reid G, Tsaltas J, Cooper M, Wills H. Fertility outcomes following laparoscopic
colorectal endometriosis surgery Poster exhibited at the World Endometriosis
Congress, Melbourne; 2008.
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Endometriosis often acts like an “iceberg” with most of the disease under the surface. The aim of cutting out or “excising” the disease is to remove the whole of the “iceberg”. This type of surgery results in
substantially better outcomes and often avoids radical surgery like hysterectomy. Many surgeons simply diathermy or laser the surface leaving residual disease and more symptoms. Unfortunately, and as you might expect, if most of the disease is left behind it is not surprising that many patients have “recurrences” and need more surgery usually via laparoscopy. Many of these people have “residual” disease. In other words it either wasn’t removed or only some of it was. The reality is much more complex although for many people the need for repeat surgery after an excisional approach is (and should be) low. My current data show a 9% recurrence rate for chocolate cysts and 6% with no cysts. This is almost certainly too low. Some patients with recurrences will not have returned and I will not therefore know about them although even if I double these numbers, I think they are still acceptable.
Ask your surgeon about the differing techniques and their experience and results before you decide what to do. All laparoscopies for endometriosis are not the same.
Good question. A patient today asked me if we removed her endometriosis, would that mean she might put on weight.
Our own unpublished data and several published reports have shown a statistical reverse relationship between weight and a diagnosis of endometriosis. If you have endometriosis you are more likely to be thin. In my practice it is very unusual for patients with endometiosis to be overweight. The effect is so striking that my anaesthetists can often predict the likelihood of someone having the disease simply by looking at them.
In theory, the opposite should probably be true. Fat tissue has the capacity to convert natural steroids to estrogen so overweight people tend to have a higher estrogen level than others. All other things being equal, since endometriosis is an estrogen dependant condition, you would therefore expect people with endometriosis to be heavier.
Why this should be so is unknown. Maybe people with endometriosis are in pain, depressed and cope less well, and so don’t eat, although equally that might be reasons to put on weight. In fact, we have known for some time that people with endometriosis have a much higher pain threshold than others, presumably as a result of the chronic nature of the disease so personally I find this an unlikely explanation.
In my experience, if we remove my patient’s endometriosis she is unlikely to to change weight either direction.
Irrespective of these issues, endometriosis is a bad way of trying to control weight.
The traditional way of diagnosing endometriosis has involved a history of cyclical symptoms, usually variants of pain or infertility, followed by a laparoscopy (keyhole surgery). The problem is that laparoscopy is invasive, has the potential for significant complications and is expensive. Not unsurprisingly, many studies report significant time lags to diagnosis – up to 10 years for some groups.
Exciting new evidence reveals that the underlying problem may lie within the uterus in the zone between the endometrium (which is shed at menstruation) and the myometrium (the muscle of the uterus). Our research team at Sydney University have demonstrated the striking finding that patients with endometriosis have nerve fibers in the lining of their uterus (ie the “normal” endometrium) whilst those without the disease do not have these nerve fibers. (Al-Jefout et al. 2009) This allows for the dramatic possibility of diagnosing endometriosis without an invasive laparoscopy. We are currently working on a urine test for diagnosis which would fundamentally alter the current management of the disease.
This new endometrial biopsy test and a possible urine test will dramatically alter the management of the disease in years to come.