BLOG #5 QUESTION: IF ‘COMPLETE EXCISION’ IS THE GOLD STANDARD FOR ENDOMETRIOSIS TREATMENT, WHY IS IT SO UNCOMMONLY OFFERED?

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Following is a list of factors that negatively impact the use of ‘complete excision’ to treat endometriosis.

Most Gynecology (gyn) training programs continue to teach that ‘endo’ is a chronically recurring disease regardless of any form of treatment. Of course, my own experience using complete excision – LAPEX – is that after a carefully performed LAPEX, less than 10% of patients have a subsequent surgery during which endo is diagnosed and pathologically confirmed.

This teaching that endo is a chronically progressive disease in spite of treatment mistakenly leads gynecologists to believe that any surgical treatment short of removing all pelvic organs (ie. hysterectomy, tube and ovary removal) is a waste of time, energy, and resources, and that conservative surgery (like LAPEX) requires a surgical risk that does not have a long term benefit.

Gynecology resident doctors have only limited opportunities to treat endo during residency training programs. Furthermore, exposure to surgical treatment is often limited to patients with stages 3 and 4 disease who are requiring removal of uterus, tubes or ovaries. To my knowledge, there are no gyn residency programs teaching their residents the LAPEX surgical procedure. If a gyn surgeon wants to learn to excise the disease Laparoscopically, he/she must seek out post residency training, usually as a Fellow at a center of expertise like ours (Center For Endometriosis Care). This additional training needs to include delicate dissections of endo and scar tissue around bladder, ureter, intestines and beyond.

Even when these skills have been mastered, surgeons may face invasive endo in organs and need to remove segments of intestine, portions of the bladder wall, or a section of ureter. If specialists are not immediately available to assist the gyn surgeon, the case may need to be prematurely interrupted in order to assemble a team of appropriate specialists to complete the necessary surgery.

Therefore, if a gyn surgeon is encouraged to see for him/herself if results (like the ones I can attest to after decades of experience) can be achieved in their hands, it is not a simple substitution of an alternate surgical procedure – special training is necessary.

The lowest rates of recurrent endo are reported when the surgeon removes all abnormal/atypical peritoneum. If the surgeon relies on his/her visual expertise in recognizing endo, some of the disease is likely to be left behind resulting in incomplete excision. Obviously, recurrence rates will be higher in this situation, and this leads to underestimating the value of complete excision. In one of our own published studies, we found that complete excision required removing all atypical peritoneum, because atypical peritoneum frequently contained microscopic endo (I will also discuss this further in a future blog).

In endo cases with extensive disease, there is a valid concern that LAPEX will create adhesions in the internal excision sites as the patient heals. However, adhesions also form when the disease is left untreated or simply suppressed by drug therapies.

In Blog #3 I discussed circumstances that I feel allow for delaying definitive surgery. If quality of life, infertility or pelvic masses do not require disease excision, it may be reasonable to suppress endo using simple ovulation inhibition, and follow the patient closely. However, in my experience, it is best to remove all disease via LAPEX and then if necessary treat the adhesions as required subsequently. Using this plan, follow-up surgeries were significantly less complicated because there was no more disease. When adhesion treatment is not complicated by endo, I found success rates to be significantly higher. The important thing to remember is that adhesions may be a problem in endo patients with or without surgical treatment. Avoiding LAPEX offers no guarantees that adhesions will not progress.

Misleading information is being provided to gynecologists regarding the effectiveness and safety of strong drugs that are bringing in literally millions and millions of dollars to the manufacturers. If the information that the manufacturers provide is not read very carefully, the reader may conclude that a drug generally controls endo, that it can be used for an indefinite amount of time, and that the side effects are easily tolerated by the majority of patients. In my experience, these are inaccurate conclusions for all except oral contraceptives.

Finally, there is no financial incentive to learn excisional skills or to perform long surgeries painstakingly excising every bit of endo and all atypical peritoneum. In the majority of cases, insurance companies/government programs pay the same amount for a simple Laparoscopy (such as a diagnostic Laparoscopy with removal of an ectopic pregnancy) as they do for a 4-6hr meticulous, complex LAPEX. Additionally, if the surgeon takes 15-30 minutes to remove an appendix because it contains endo, he/she is paid nothing because “most appendectomies are incidental.”

When each of the above factors is taken into consideration, I think it is easy to understand why the ‘gold standard’ of treatment is the exception and not the rule. Only in highly motivated surgeons do we find this treatment available today. The good news is that we are making progress in the training of more surgeons qualified and motivated to treat endo definitively.

Stay tuned!

Blog #3 Delaying Definitive Treatment: When, Why & Who?

16_9210501799.jpgIt may be reasonable to delay the ‘gold standard’ (‘definitive’ treatment) in some cases. These include:

1. THOSE UNDERGOING OBSERVATION WITH OR WITHOUT SUPPRESSION
Particularly in young patients who experience symptoms suggestive of ‘endo’, I often observe them over a period of time (6-18 months). I may do this if they are managing their pain without narcotics, and their physical exam and pelvic ultrasound are normal without subtle findings suggestive of ‘endo’ (subtle findings to be discussed further in a later blog). I often suppress ovulation with a low dose oral contraceptive if tolerated well by the patient. During the interval of observation, I want to rule out other potential causes of the symptoms, and carefully monitor the trends in the patient’s pain levels, other symptoms, and any changes on examination or ultrasound.

2. INFERTILITY
Although fertility rates increase (in our data) after ‘excision’ in all but stage 1 patients, I advise practitioners to work with ‘reproductive endocrinologists’, and make the decision to advise surgical excision jointly. We will discuss the rationale for delaying surgery in certain infertile individuals in a later blog. However, it is true that I have delayed ‘excision’ in patients in order to continue a specific infertility treatment on a trial basis.

3. ASYMPTOMATIC PATIENTS WITH DOCUMENTED ENDOMETRIOSIS WHO ARE CLINICALLY STABLE
The patient that presents with documented ‘endo’ but is clinically stable is a candidate for delaying ‘excision’ if they can be followed by an experienced ‘endo’ doctor. They must be careful to report changes in symptoms, and have office reevaluation at 6 month intervals. The doctor must be one that actively looks for any indication that the endo is advancing. A thorough history and careful examination are important to recognizing signs of progressive disease. Ovarian suppression is certainly an option in these individuals. Postmenopausal patients (with known ‘endo’) that are asymptomatic are in this group, and are slightly more at risk if on hormone replacement.

4. PATIENTS THAT HAVE HAD ENDOMETRIOSIS SURGERY RECENTLY THAT WAS NOT ‘DEFINITIVE’
Many patients are referred to an ‘endo’ specialist after a diagnostic surgery, or a surgery that left endo behind. They may need time to evaluate benefits from the surgery just performed, or additional time to plan for a ‘definitive’ surgery that may have additional risks.

5. PATIENTS WITH CO-MORBIDITIES THAT MAY INCREASE RISK
Important to the decision to perform any surgical procedure is the ‘risk’ to ‘benefit’ balance. The existence of other diseases, conditions, and genetic factors can significantly increase surgical risks. The decision to avoid or delay surgery is best made by each individual and her doctor after taking into account the possible increases in risk due to a ‘co-morbidity’. See also: Surgical Risks: What’s the Big Deal?

STAY TUNED FOR MORE TO COME!

Blog #2: My Suggested Treatment Plan

In most cases, I favor treating patients definitively (I will list the exceptions to this recommendation in following commentary).

This means that I recommend all endometriosis is completely excised from the body. Up to this point in time, the only way that I am aware of that this can be done is by surgical excision. While I favor doing this Laporoscopically (using small umbilical and accessory ports for instrument insertion), this treatment can also be done by laparotomy (open incision). The energy source used for excision is best left to the experience and confidence of the surgeon, but I use the carbon dioxide laser as my energy source (why will be the discussion of another blog; see also http://centerforendo.com/dr-albee-on-excision).
china6There is one critically important aspect of excising all disease that is often overlooked by surgeons. Subtle ‘endo’ can hide in peritoneum that looks atypical, but does not have one of the ‘classic’ appearances of ‘endo’. In order to have low recurrence rates, surgeons must not leave any disease behind. This means that the surgeon must be committed to removing abnormal/atypical peritoneum even when it does not have a ‘classical’ appearance. For more on this discussion, refer to one of my academic papers on the subject: https://www.ncbi.nlm.nih.gov/pubmed/18262141.

Definitive treatment in my experience is the most effective treatment because it:

– Results in the longest intervals of time before retreatment is required (our data continues to indicate that 80-85% of our patients are currently free from any clinical indication of recurrent ‘endo’);
– Results in a significant improvement in ‘quality of life’ and pain reduction scores on follow-up surveys; and
– Fertility rates improve in stage 2, stage 3,and stage 4 cases after excision

The emotional burden of being told that you have an incurable disease is enormous. I do not tell patients that I am going to cure them, but I do tell them that if they have any more ‘endo,’ they will be the exception and not the rule (understanding that not all pelvic pain is the result of endometriosis and there are often comorbidities which also need to be addressed). Please note my above figure on our percentage of clinically disease-free patients after excision.

In following blogs, I will discuss the current objections to definitive treatment, and the reasons that I feel it is not more commonly used. But up next, let’s talk about ‘when I do not recommend definitive treatment.’ Stay tuned!

Blog #1 July, 2017 “The Great Treatment Debate:” first, lets define some important terms…

Let’s use two large treatment categories:

  1. Definitive Treatment
  2. Non-definitive Treatment

‘Definitive Treatment’ includes all treatments intended to completely remove all areas of endometriosis.

  • Laparotomy with excision of all areas (using the technique and energy source chosen by the surgeon)
  • Laparoscopy with excision of all areas (using the technique and energy source chosen by the surgeon)
  • Hysterectomy/Oophorectomy only if all areas of ‘endo’ are also completely removed at the same time
  • Possible future techniques using external energy sources to remove ‘endo’

‘Non-definitive treatment’ includes treatment options intended to control the disease.

  • Observation: is really not in either category, but is still a ‘non-treatment’ choice if a patient’s diagnosis is uncertain, examination is normal, and pain is easily manageable
  • Disease Suppression:
    • Simple ovulation inhibition
    • Progesterone therapy
    • Anti-estrogen therapy
    • Advanced ovulation inhibition resulting in medical castration
    • Aromatase Inhibitors
  •  Disease Reduction:
    • Laparotomy with removal of some, but not all, ‘endo’
    • Laparoscopy with removal of some, but not all, ‘endo’

The standard treatment for ‘endo’ today has not changed significantly during my professional career. This approach is predominately ‘non-definitive.’ It begins with simple suppressive treatments, using stronger suppressive treatments when pain or infertility persists, and may include surgery with some disease removal, then ultimately leads to hysterectomy when the disease remains uncontrolled.

Sadly, I see many of these hysterectomized patients who actually needed only to have their ‘endo’ actually removed – excised – to achieve a satisfactory quality of life. Even worse, if all ‘endo’ is not removed at the time of hysterectomy, pain may continue despite the absence of the uterus or even ovaries if the patient is placed on hormone replacement (basically a good idea in the castrated woman of premenopausal age).

Why has the non-definitive treatment of the disease remained standard? Blog #2 will continue this discussion, along with my approach to treatment. Stay tuned!

My Endometriosis Experience…

Welcome! A brief introduction to my blog:

I began specializing in the treatment of patients with endometriosis (and unexplained pelvic pain) in 1990. At that time, I stopped seeing obstetric patients (something I dearly loved) altogether and launched the Center For Endometriosis Care, one of the first tertiary referral centers in the world dedicated to the disease. The Center, and the addition of a partner, provided me with a unique opportunity to personally have long term follow-up of a large group of patients diagnosed and treated for endometriosis through Laparoscopic Excision, or what I termed, “LAPEX.” I made the decision to focus on this group of patients because effectively treating the ‘endo’ patient was, in my mind, one of the greatest challenges that I faced year after year. I knew in my heart that there had to be a better method of treatment – LAPEX – and practitioners needed to stop failing our endo patients. Today, that group of patients has grown to over 5,000 hailing from more than 50 countries.

As I retired from surgery (in 2013), I have had more time to devote to helping the endo community with understanding the ‘modern concepts’ of the disease and to aiding patients with informed decision making. This blog is part of that effort.

Using a blog makes it possible for many people to get answers to the commonly asked questions I have received over the years (and still do today), in a manner that is easy to understand and at no expense. I also think will be a personally rewarding experience for me as well, and I am delighted to have you along for journey!