Endometriosis: The Triad of Successful treatment

Understand, I am not a physician, nor researcher, nor NP. I am, however, someone who has talked with tens of thousands of patients over the last 33 years. Currently, I manage Nancy's Nook on Facebook, an endometriosis education board with 15 other admins and moderators all with extensive experience with endometriosis both professionally and personally. Likewise our resource physician list includes a number of the worlds leading experts in surgical treatment of endometriosis, something for which I am very grateful.

T We currently have 145,000 International patients continuing to grow at the rate of 700-1000 a week, who have failed all gynecology has to offer except expert excision of their disease. Once they reach this point, about 75% of them have also been dismissed as neurotic and many now report being told they have central sensitization and will have to live with the pain. Almost all of them have persistent, painful endometriosis and when we can find them expert help, they get long-lasting pain relief. (Many are now approaching 30 years of pain-free but hang with us to encourage others. )

But causative factors need to be removed before dropping everything on central sensitization. The question that comes to mind around CS and psychological dismissal is: are we using these as excuses for failing to bring adequate expertise to the OR? Yes, some recurrence and some aggressive endo exist, but for the majority in my experience, that is not common when the expertise in the surgeons is adequate and, appropriate consultants are part of the team. It is possible to eliminate symptoms with adequate surgical skill but very few are trained at that level, even among “specialty” centers. They do not know that they do not know. Years ago, prior to the emergence of the body of work by David Redwine MD dubbed Modern Concepts, the published cure rate of endo thru excision was in excess of 50%. Still today, everyone including much of gynecology believes it is incurable, yet with enough skill it is quite possible.

Dr. Andrea Vidali recently noted that we are coming into an era where crowdsourced information in endometriosis for patients is rapidly exceeding the information that general gynecology has available to them.

A recent newsletter published by the Washington Post in their The Lily newsletter documents the journey most patients must go thru to get a diagnosis let alone resolution:

https://www.thelily.com/endometriosis-is-so-much-worse-than-a-bad-period/?fbclid=IwAR3C5wZ4ZePeNnq-SjFZvgX1qTYcpsX0365hm68NmOjNJDKD6MLkkDne314

So where is the disconnect? We see studies all of the time noting that surgical therapy and medical therapy have high recurrence rates and comparable outcomes. This leads many astray. None of the studies differentiate between surgery and EXPERT EXCISION, and there is clearly a difference. Most of our patients have had multiple surgeries and are now being told no more surgery, nothing further will help. Very often this is not true. What is true is that persistent disease hurts, and in nearly every case can be removed if the surgical skill is available to do so. We recognize that there are multiple pelvic pain generators, and those have to be identified and treatment plans put into place. However, no treatment plan will have good outcomes if you leave painful endometriosis lesions in place. Think peritoneal-quality pain. This is a term I coined many years ago when I first began lecturing on endometriosis. These patients often have pallor, bloating, intense abdominal pain (much worse on pelvic exam, ) rebound tenderness in some cases, nausea, bowel dysfunction, restlessness, anxiety etc. All symptoms that go along with acute events in the abdomen that alarm us in any other disease, but somehow in patients with endometriosis that level of symptomatology gets dismissed as "oh its just a period". We do not even address the level of pain with which they are trying to live.

Likewise, almost all of our members on this education board have failed multiple medical therapies, too many are left then with permanent side effects. The side effect issue is much larger than medicine notes, as the true nature of the GnRH drugs has been "suppressed" itself with a court order so physicians and patients alike never had a chance at informed consent. 25,000 side effect complaints have been filed with the FDA, left unaddressed despite the permanency of the damage, 14,000 of which were deemed serious. The new oral drug according to principal investigators who contacted me have all the same problems that Lupron did, does not control or eradicate endometriosis, costs nearly $11,000 a year and is no more effective than birth control/oral contraceptives that may run $100.00 a year. Nearly 100% of patients when last studied, who were on Lupron still had pain. Those investigators were limited by contract and could not speak out publicly. Likewise the company claims that Orilissa relieved moderate to severe pain has been dropped because it is not true but physicians were pulled into that belief with early marketing.

The low estrogen state side effects are ignored by most, pushing them on down the life span of the patient where current caregivers do not have to address the impact:

https://www.jmig.org/article/S1553-4650(19)30206-7/fulltext?fbclid=IwAR0YderxrQt3cry3H9JbKp3xy1W0LrjjP0JpX4ICEKiN_-6-EHvK3hqBmAM

https://www.mayoclinic.org/diseases-conditions/small-vessel-disease/symptoms-causes/syc-20352117?fbclid=IwAR3qCG9bWxtVJWt-jFOYIAy5I0oU3QEXT9vpgK8fOwUnGQv69m36hF_9JXs

https://www.medicalnewstoday.com/articles/323999.php?fbclid=IwAR3FeZ6pkRhBQTX6qWhcrVDi2dU-2CqG82VyYUT7v7qhRspp3rfvHlngVgc

(memory, bone loss, heart disease, all real risks from suppression get a pass, let alone the diminished sexual responses)

Studies showing failure rates among approaches for medical and surgical treatment are about the same. This tends to color surgeons' attempts at caring for these patients as pessimistic. The problem is the studies NEVER differentiate between surgery and EXPERT surgery and there is a huge difference.

In my years of talking with patients, what I see in successful surgical outcomes is best achieved in the 3 main categories.

First, physicians, NP's and others caring for patients really have to recognize the disease profile. The average time to diagnosis after the onset of symptoms is 9 years. NINE YEARS, that is stunning and it speaks to the inadequacy of our training and medical schools. With the damage endometriosis can do to fertility and the amount of intense pain it generates, this gap must be closed, patients need to access expert care far sooner, let alone having to live with peritoneal-quality pain all that time.

The red flags for potential endometriosis are pretty simple. We can teach the red flags to tens of thousands of patients so I believe it is quite possible to teach them to physicians and others caring for patients with pelvic pain: pain with sex, pain with bowel movements, pain with exercise, pain with pelvic exams, (if the patient tries to leave the exam table when you ratchet open the speculum, double red flag), bloating, bowel dysfunction (diarrhea , constipation, or both, )pain at mid cycle, pain with periods, pain all of the time or just cyclical, low back pain, sciatica, right shoulder pain, lung collapse. It is stunning the percentage of patients who are told bowel symptoms are IBS and completely unrelated to endometriosis, yet they are commonly found to resolve once endometriosis has been adequately removed and the peritoneal signs and symptoms disappear so many symptoms of endometriosis get attributed to other issues and a good work up is never completed. So many of the severe extra pelvic symptoms get denied secondary to the physicians limited exposure to the growing body of information on the impact of endometriosis. Dr. Marc Possover's book on Neuropelveology is a classic example of the widespread symptoms that can occur with endometriosis that are commonly denied as being related to endometriosis.

So we cannot begin to get a handle on endometriosis if we do not recognize the possibility that the patients symptoms are in fact endometriosis. Yet, most patients have cardinal symptoms of this disease, and they are ignored for 9 years on average. That does not speak well for gynecological care. It is common however, to see patients with significant symptoms for 15 or 20 years before a diagnosis of endometriosis is considered and needs to be ruled out. My own experience is it took 17 years of repeated hospitalizations with acute abdomens, severe period pain, severe ovulation pain, severe back and leg pain to get a diagnosis and another 22 years after that to get relief from complete removal of endo.

One category of patient often dismissed is teens and pre-teens. Not only do they have endometriosis, we are often seeing extensive disease and commonly adenomyosis suspected secondary to symptoms and scans. The youngest I have seen mentioned in our group is an 8 year old seen by John Dulemba MD in Denton Texas. Many of these kids have been told to suck it up, its just a period. Yet we find bowel involvement, disease in the cul-de-sac, ureters, pelvic sidewalls. Just recently two prominent surgeons noted DIE in the pelvis of teens, (deeply infiltrating endometriosis) and a couple of patients with widespread lower pelvis/bowel disease that had been dismissed as impossible due to the patients age.

Secondly, once endometriosis is considered a work up has to be done. The only way to confirm endometriosis is with laparoscopy. But it should not be limited to that. Repeatedly, members of Nancy's Nook report normal laparoscopies despite classic symptoms. Again, where is the disconnect? When we send them on for another opinion with their classic symptoms, they commonly have significant disease, often deep disease. Well, knowing how to do a laparoscopy, and being a gynecologist, does not make one an expert in endometriosis recognition. RP Jansen MD in Arizona Medicine in the1960's, as well as David Redwine MD and Dan Martin MD have all noted endometriosis is not the black disease of the ovary described by Sampson and used to guide physicians as to the presence or absence of the disease. In fact most black disease is found to be hemosiderin or blood staining of tissue, not the disease itself. If you are looking for black disease on the ovary you will miss 75% of the disease according to David Redwine's research. Often patients are dismissed from care because their scans are negative. Despite claims to the contrary, scanning cannot rule out endometriosis. Weekly we refer patients on with negative scans who then are found to have extensive disease confirmed by independent board certified pathologists. So while scanning may be improving, it is not where it needs to be to allow us to dismiss symptoms and patients as disease-free. Mr Mohammed Mabrouk recently did a discussion in Nook on the diagnostic laparoscopy confirming what we have suspected for some time, that pristine uterus, tubes and ovaries do not rule out endometriosis. You have to look where disease is most commonly found as well as where symptoms lie, but any never bother to examine the lower pelvis, diaphragm, etc. https://endopaedia.info/origin34.html distribution of endometriosis by age groups.

So you have to understand that endo evolves in appearance, starting with clear papular disease thru a myriad of colors, (orange, red, blue, black, and white plaques often described as white burned out disease and left behind) in many cases. You have to understand what it looks like as well as where it is found. Often distribution of disease is not considered and you see references to the ovary and uterus being in pristine condition, so you do not have endometriosis, and yet the ovary/uterus are 7th and 9th in frequency of actual involvement. So looking where it is commonly found is critical as well as what it looks like. Symptoms do not always correlate with the areas involved so examiners need an open mind when searching the pelvis for disease. It is not reassuring to have a report of pristine uterus, tubes and ovaries.

Mr. Mohammed Mabrouk from Cambridge notes as do many others, diagnostic laparoscopies are not of much value in that they are improperly done using one or two port entries they miss the most common sites of occurrence.

Commonly patients are told their surgery found no endometriosis but in fact they have deep disease in the Pouch of Douglas, peritoneal pockets and other lower structures. So a previous "normal" laparoscopy in a patient with classic symptoms does need to raise the index of suspicion that something was missed.

Lastly, surgical skill is paramount. Gynecologists do not leave their residencies prepared to treat endometriosis expertly. Most have not taken a fellowship in minimally invasive surgery. That is step one, being MIGS certified means you can do minimally invasive surgery once you complete the program but it does not bestow expert skills in disease recognition, location and removal. There needs to be an endometriosis specific component to MIGS training. We see many MIGS trained surgeons using ablation to treat endometriosis. Ablation is an incomplete therapy, with a high failure rate estimated at 50-80%. Trained expert excision has a published recurrence rate of 5-19%. Recently Dr Zahn at the Mayo Clinic in Rochester told me they have stopped doing ablation as treatment for endometriosis due to its ineffectiveness. Once fellows complete a program, their learning is not over, this does not bestow expert skills. What does happen as surgeons begin to see more and more endometriosis patients, is that skills and learning progress. Dr. David Redwine in his early practice turned away some of the more complex cases as he felt he didn't have the necessary skills. However, mostly complex cases wanted to come and as he took them on, he noted his learning curve when straight up.

Commonly our patients have been told their disease is inoperable because it is on the bowel, or near a blood vessel or on a nerve or near a nerve. What is true is that there is almost no endometriosis that has to be left behind if the skill in the surgeon is great enough. These patients also commonly are told that having their ovaries or uterus or both removed will cure their endometriosis as it will dry up and go away. This is not true, endometriosis makes its own estrogen supply and there are now published cases reported of persistent endometriosis following surgical or natural menopause some as long as 22 years after surgery. Castrating a patient does not treat endo, nor does pregnancy, nor does medical suppression, all leaving them at risk for continued pain. AAGL in their member and patient teaching materials has been quite clear that normal organs should be left alone to reduce risks related to lower estrogen states. Medical suppression in fact does nothing for endo aside from quiet some symptoms. Yet patients are told it is curative, will dry up or eradicate their disease. Not true, but what medical therapy does do is put patients in low estrogen states which has its own set of issues. By using medical therapy, we push the impact of low estrogen states on down the patients life span to be ignored in the present. (small vessel heart disease, memory loss, bone pain, bone loss, ovarian loss, fractured hips in young patients which then cannot be pinned due to the fragility of permanently damaged bone. This results in the rest of their life off their feet, perhaps bed bound and all of the complications that come from permanent bed rest which can lead to premature death) This is never addressed as we simply ignore it in the present. Skilled surgery eliminates the impact of low estrogen states.

Excision skills can be taught and more and more fellowship programs are going beyond just teaching MIGS, but in fact including key skills in recognition and removal of endometriosis. This does not confer expert status, that comes from doing a lot of endo surgery, applying the skills learned and being willing to look again if symptoms recur. Missed disease is common in early surgeries, even among experts we see the occasional missed lesion. But being open to the idea of persistent or recurrent disease gives the patients the best chance for restoration of the quality of their lives and resolution of their endo. More and more we are seeing a call for laparoscopy to be the primary approach and open laparotomies left to the past due to their higher complication rates.

So knowing what the disease presentations are, what it looks like, where it is found and lastly having had endometriosis specific training and mentoring lead to the best outcomes and the best opportunity to restore quality of life, preserve fertility, save jobs, save relationships, and to be able to actually manage a family if one wishes to have children. It is really apparent that completing a ob/gyn residency does not prepare doctors to do effective endometriosis treatment. It is such a devastating disease on the quality of life, career impact, relationship impact, fertility, that we should seriously begin to move to speciality centers for treatments. Its way past time.

****. With Dr. Gabriel Mitroi's permission have added his overview on gaining skills in endometriosis management

Dr. Gabriel Mitroi

23 hrs

Endometriosis specialist, what does it mean??

As you might know, there is no speciality for endometriosis and I agree with Prof. Roman suggestion of having endometriosis listed as sub-speciality. Based on my medical degree, I am an obstetrician-gynecologist. After I have finished my residential training, I have done a couple of training courses in laparoscopy, urogynecology and onco gynecology.?

I often see online questions about “how do I tell my gynecologist to do excision”? And what is an endometriosis specialist? One of my patients highlighted a comment from a health/politician person saying that all obstetricians & gynecologists learn about endometriosis diagnosis and management in medschools, therefore all know how to treat it.?

I graduated in 2003 followed by 5 years of residency. In those 5 years, I have learned a lot about obstetrics and general gynaecology health issues. Endometriosis back then was not discussed or taught us enough to be able to treat it (correctly). Therefore, when I started practising, all I knew about endometriosis is what most obs-gyn know, a reflux menstruation disease, rare, and so on. It wasn’t until I was introduced to laparoscopy and endometriosis by Prof Wattiez among others, that I have learned the basics needed to treat endometriosis correctly.?

All I know today about endometriosis, 17 years after I graduated, is due to my personal and professional interest in this disease. I wanted to know more about endometriosis, I wanted to learn how to treat it correctly, so I have done quite a few training courses to be able to do so.?

To surgically treat endometriosis you need a few things; knowledge about the disease, a thorough knowledge about the pelvic anatomy and the ability to remove it safely from all areas/organs affected. The lastest comes with experience. Therefore, if a patient with endometriosis tells the gynaecologist that excision is better than ablation, and asks him/her to excise, even though the doctor agrees with the patient, to be able to do it, s/he needs quite a lot of experience.?

The pelvis is a very narrow space and it has numerous blood vessels and nerves, some are attached to vital organs. Endometriosis comes under different shapes, colours and can be found pretty much anywhere in the pelvis. So any surgeon that wants to treat endometriosis in all its shapes, needs through training and then experience. Doing endometriosis surgery a couple of times a month, or every now and then is not enough.?

After my self-introduction to endometriosis, my experience was a beginner. For the last 4-5 years, endometriosis is my main activity. I have developed my skills and knowledge by allocating time to treat endometriosis and investing in my training. Because I have an interest in endometriosis I attend different endometriosis conferences and I am part of endometriosis societies.

In terms of numbers since I deal mainly with endometriosis, I have done hundreds of surgeries so far. It might be a small number for some, but I, same as the other endometriosis specialists, take all the time needed for surgery. I have never compromised on the quality and I will never do it due to the lack of time. I rather do fewer cases and give all the time needed, than do more with less time. I operate 3 days a week and I can do up to 2-3 endometriosis surgeries a day. I have had days when I could only do a single surgery, meaning that it was a complicated case. Such case I operated on was a few weeks ago, intestinal and urinary endometriosis, so that was the only surgery that day. My most recent surgery lasted 9 hours.?

In a nutshell, while I do not hold a speciality in endometriosis, a big part of my time at work and outside work is spent dealing with endometriosis. I do about 20 surgeries a month, I travel for endometriosis conferences, I keep up with the latest information on endometriosis, I work with a team to be able to treat all types of endometriosis in one go, I make efforts in making sure that my patients needs are met, I invest time and money in my training. And yes, is not always easy at this end either, but I do all of this cause I want to offer endometriosis patients the treatment that they need.?

#endometriosisexcision

#bucharestendometriosiscentre

#deependometriosisexcision

#specialistendometrioza

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#centrudeendometeiozabucuresti

We also teach patients that other pelvic pain generators can be an issue. Here is the outline of that process but we never suggest a patient should accept central sensitization as the issue when they still have endometriosis:

One size does not fit all: excision is step one

One size does not fit all: by that I mean excision will address endo, assuming the surgeon is truly trained in disease recognition, distribution, and removal. That is one aspect of pelvic pain and it has to be expertly addressed to eliminate endo as a cause. (not many gyn's are in fact trained for this level of surgery). Other pelvic pain generators need to be addressed when pain persists after EXPERT excision. It is common for the disease to be missed by general gynecology at surgery, or for the disease to be intentionally left when the surgeon does not have the skills or training or when they believe they can "clean up" endo with medication. (not true, meds do not treat endo).?

Other pelvic pain generators need to be identified and a treatment plan devised for each. You cannot remove endo and expect pelvic floor dysfunction to fully resolve. Nor does the removal of endo address a painful uterus with adenomyosis, nor does excision resolve ovarian cysts which can return by pushing up from the body of the ovary with cycles. Bladder issues such as Interstitial Cystitis will also need their own treatment plan if present. Wellness is a journey, while some will feel well with endo excised, others will have other issues that need attention.

Likewise having been in chronic pain for years, you may need some emotional support to get past the impact of treatment failures, anger at the system (which did not fail you on purpose, rather did not know what it did not know so did what they thought would help). Learning to let go of the anger, and victimization one can sometimes feel from being chronically ill, once resolved also can take a plan for many. The nature of relationships also changes after the disease is resolved. Family members roles will change as you become healthier, and your role will as well. This can cause conflict and counseling can help.

There is a sense of victimization patients can feel when the system fails them, but you can get past it rather than continue in that mode. Its a decision you make, or not.

But patients need help, skilled, compassionate help, as endometriosis may not be a terminal disease but despair can be, and we lose patients every year simply because skills are lagging behind patient needs.