By Nancy Petersen
Patients with endometriosis often go through years of symptoms before the diagnosis of endometriosis is made and even longer before finding relief. The keys to successful treatment start with three things: recognizing the symptoms of endometriosis, knowing how to properly diagnosis it (including knowledge of the many appearances and locations of endometriosis), and acquiring the skills needed to treat it.
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.
We currently have 109,000+ international patients continuing to grow at the rate of 800-1000 a week, who have failed all gynecology has to offer except expert excision of their disease. Once they reach this point, historically 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. But causative factors need to be removed before dropping everything on central sensitization. Almost all of them have persistent, painful endometriosis- and when we can find them expert help, they get long-lasting pain relief. There are a number of patients now approaching 30 years of being pain free.
The question that comes to mind around central sensitization and psychological dismissal is: are we using these as excuses for failing to bring adequate expertise to the operating room? Yes, some recurrence and some aggressive endometriosis exists. But for the majority, in my experience, that is not common when the surgeon has the experience 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. Some do not know that they do not know.
Dr. Andrea Vidali recently noted that we are coming into an era where crowd-sourced information in endometriosis for patients is rapidly exceeding the information that general gynecology and primary care providers have available to them. “Endometriosis Is So Much Worse Than A Bad Period“, from The Lily newsletter published by the Washington Post, documents the journey most patients must go through to get a diagnosis- let alone resolution.
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 it’s 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, and some are then left with permanent side effects. Many patients are put on these hormonal medications for extended periods of time, despite the medications’ recommendations for safety for less than a year of lifetime use. These drugs cost a lot of money, are not recommended to use long term, can cause permanent damage (such as bone loss), and does not eradicate endometriosis. The low term low estrogen state side effects are not sufficiently discussed (such as memory, bone loss, and heart disease). 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. 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, providers really have to recognize the disease profile. The seemingly unrelated symptoms (for example, low back pain, bloating, alternating diarrhea/constipation, and fatigue) that together give a strong indication of endometriosis needs to be recognized. 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. During that time, endometriosis can do damage, not only to fertility, but also to the quality of life for those with endometriosis (the effects of long term intense pain, lost ability to work or go to school, etc). This gap must be closed- patients need to access expert care far sooner, to reduce damage to fertility, organs and quality of life.
The red flags for potential endometriosis are pretty simple. We can teach the red flags to patients so they know to bring the subject up, but we also need providers to be cognizant of them too. Symptoms such as chronic 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 irritable bowel syndrome (IBS) and completely unrelated to endometriosis- yet they are commonly found to resolve once endometriosis has been adequately removed. 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 provider’s 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.
As endometriosis affects 1 in 10 women, it should be high on the suspicion list for these symptoms. It is common, however, to see patients with significant symptoms for 15 or 20 years before a diagnosis of endometriosis is considered. One category of patient often dismissed is teens and pre-teens. Not only do they have endometriosis, we are often seeing extensive disease as well as suspect adenomyosis based on 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, it’s just a period. Yet we find endometriosis in the bowel, the culs-de-sac, the ureters, and pelvic sidewalls. Just recently two prominent surgeons noted deep infiltrating endometriosis (DIE) in the pelvis of teens and widespread lower pelvis/bowel disease that had been dismissed as impossible due to the patients’ age (Yeung Jr, Gupta, & Gieg, 2017; Hirsch, Dhillon-Smith, Cutner, Yap, & Creighton, 2020).
Secondly, once endometriosis is considered, then the diagnosis should be based on solid evidence, not suspicions (confirmed biopsy with surgery versus “if this hormonal medicine helps then it’s probably endometriosis”). The only way to confirm endometriosis is with surgery, but a surgeon must know all the appearances and locations of endometriosis for this to be accurate. Repeatedly, members of Nancy’s Nook report normal laparoscopies despite classic symptoms. When we send them on for another opinion, they commonly have significant disease, often deep disease. Historically, RP Jansen, MD in Arizona Medicine in the 1960’s, as well as David Redwine, MD and Dan Martin, MD, have all noted endometriosis is not the so-called “classic” black disease of the ovary described by Sampson, 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 (Martin, Redwine, Reich, & Kresch, 1991).
So you have to understand that endometriosis evolves in appearance, starting with clear papular disease through a myriad of colors such as orange, red, blue, black, and white plaques (often described as white burned out disease and left behind). You have to understand what it looks like as well as where it is found. Often distribution of disease is not considered. 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, but no where else being examined. The persisting confusion regarding the treatment and natural history of endometriosis suggests that some of our clinical impressions may need modern restudy. Mr. Mohammed Mabrouk from Cambridge notes, as do many others, diagnostic laparoscopies are not of much value if they are improperly done using one or two port entries and 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.
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.
Thirdly, surgical skill is paramount. It takes time, training, practice, and a keen interest in what you are studying to develop the surgical skill and knowledge needed. Gynecologists do not leave their residencies prepared to treat endometriosis expertly. Most have not taken a fellowship in minimally invasive surgery. Being MIGS certified means you can do minimally invasive surgery once you complete the program, but there is still much to be learned in order to develop expert skills in disease recognition, location and removal. There needs to be an endometriosis specific component to 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.
As surgeons begin to see more and more endometriosis patients, their 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, as he took on more complex cases, 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. This doesn’t mean that it can’t be removed- it means a surgeon with enough practice and skill and who works with an interdisciplinary team is needed.
These patients also often 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 removing those organs. Castrating a patient does not treat endometriosis, nor does pregnancy, nor does medical suppression. All these can leave the patient at risk for continued pain and other symptoms. The American Association of Gynecologic Laparoscopists (AAGL), in their teaching materials, has been quite clear that normal organs should be left alone to reduce risks related to lower estrogen states. Medical suppression may quiet symptoms, but it does not resolve the disease. Patients are often told it is curative and will dry up or eradicate their disease. Not true! Long term hormonal therapy does put patients in long term low estrogen states, which has its own set of issues. The impact of protracted low estrogen states can have long term effects- small vessel heart disease, memory loss, bone pain, bone loss, ovarian loss, or fractured hips in young patients (which then cannot be pinned due to the fragility of permanently damaged bone). This impact is not often adequately addressed.
Skilled surgery eliminates the impact of low estrogen states. Excision skills can be taught. More and more fellowship programs are going beyond just teaching MIGS, but also including key skills in recognition and removal of endometriosis. This does not necessarily confer expert status- that comes from doing a lot of endometriosis 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 patients the best chance for restoration of the quality of their lives and resolution of their endometriosis. 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, difficulty in controlling organs and lack of magnification to see more subtle disease.
How do you get to the best outcomes? By knowing how the disease symptoms present, what it looks like, where it is found, as well as having endometriosis specific training and mentoring and the right specialists as part of the operative team. This leads to 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 an ob/gyn residency does not fully prepare providers 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 specialty centers for treatments. It’s way past time.
References
Hirsch, M., Dhillon-Smith, R., Cutner, A., Yap, M., & Creighton, S. M. (2020). The prevalence of endometriosis in adolescents with pelvic pain: a systematic review. Journal of Pediatric and Adolescent Gynecology. Retrieved from https://pubmed.ncbi.nlm.nih.gov/32736134/
Martin, D. C., Redwine, D. B., Reich, H., & Kresch, A. J. (1991). Laparoscopic Appearance of Endometriosis, Color Atlas. Retrieved from https://www.danmartinmd.com/files/coloratlas1990.pdf
Yeung Jr, P., Gupta, S., & Gieg, S. (2017). Endometriosis in adolescents: a systematic review. Journal of Endometriosis and Pelvic Pain Disorders, 9(1), 17-29. Retrieved from https://journals.sagepub.com/doi/abs/10.5301/je.5000264?%20journalCode=peva
With Dr. Gabriel Mitroi’s permission have added his overview on gaining skills in endometriosis management:
Endometriosis specialist, what does it mean? “As you might know, there is no specialty for endometriosis and I agree with Prof. Roman suggestion of having endometriosis listed as sub-specialty. 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 medical schools, 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 practicing, all I knew about endometriosis is what most ob-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 specialty 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. We also teach patients that other pelvic pain generators can be an issue. We never suggest a patient should accept central sensitization as the issue when they still have endometriosis. A recent study in China noted that central sensitization shows resolution once endometriosis has been properly excised. But patients need help, skilled, compassionate help, while endometriosis may not be a terminal disease despair can be, and we lose patients every year simply because skills are lagging behind patient needs.”