Endometriosis of the Diaphragm

Protocols and Best Practices for Treating Diaphragmatic Endometriosis
Keywords: Endometriosis of the lungs, chest, diaphragm, upper abdomen

 By Camran Nezhat, M.D., Farr Nezhat, M.D., Ceana Nezhat, M.D.

Lately there have been many discussions reminding us of just how crucial it is to eradicate endometriosis as completely as possible. As a surgical imperative, this is actually a time-honored principle, one that has been observed since at least the late 19th and early 20th centuries, when progenitor pioneers like Marion Sims, Cullen, and Sampson found that patients were more likely to experience relief from symptoms when as much disease as possible was removed. Sims was so committed to this principle that he even used his own fingernails to “excise” endometriosis that was otherwise difficult to remove with the standard instruments of his day! (1 , 2 )

However, implicit in some of these narratives is the flawed assumption that endometriosis returns as a result of an incomplete and/or inadequate method of treatment (ie, ablation/excision) from a previous surgery,. While it’s certainly true that inexperienced surgeons might treat endometriosis inadequately, what’s equally true, if not more so, is the fact that endometriosis can recur despite the most thorough treatment possible.

In other words, all the medical interventions in the world, by all the world’s greatest practitioners, cannot prevent endometriosis from returning in certain cases. Since these and other similar misconceptions about endometriosis have become rather prevalent lately, we thought it was a good time to bring these issues into the conversations.

And, since we are on the topic of thoroughly treating endometriosis, we would like to add to the discussion the issue of diaphragmatic endometriosis, an extragenital form that actually is sometimes overlooked and left behind due to its propensity for hiding behind the liver and other structures of the upper abdomen. (3 )

Quick overview of the diaphragm’s anatomical features
For those who might want a quick anatomy refresher course, we thought the following review of the thoracic diaphragm’s anatomical features would be a good place to start. The most important muscle for human respiration, the diaphragm is a long and thin, convex organ located below the heart and lungs, attaching to the lower ribs, sternum and lumbar spine and forming the base of the thoracic cavity. Positioned as it is, it conveniently separates the chest cavity from the abdominal cavity. Lengthwise it ranges from 6 to 12 inches, while its thickness usually measures somewhere between one-quarter to one-eighth of an inch. With its symmetrical, lobe-like formation, the diaphragm’s right and left sides are distinctly demarcated (though still contiguous). For this reason, many physicians refer to the two lobes as the right and left hemidiaphragms. The diaphragm’s main innervating source is the phrenic nerve, which in turn is fed by the cervical nerves C3, C4, and C5. (Many of our physician friends will probably remember the mnemonic, “C-3, 4, 5, keep the diaphragm alive.”). However, there are also two peripheral innervating sources called the intercostal and subcostal nerves, located at T5-T11 and T12, respectively.

Highly flexible, the diaphragm contracts and relaxes as breathing takes place. Specifically, when a person inhales the diaphragm and its intercostal muscles contract downward, thereby widening the thoracic cavity in which the lungs are contained. As a result, air fills the lungs through the mechanical process of suction. When a person exhales, the diaphragm and intercostal muscles relax, thereby mechanically forcing air out of the lungs.

Most Common Symptoms of Diaphragmatic Endometriosis
Symptomatic diaphragmatic endometriosis can manifest as shortness of breath (dyspnea), epigastric pain (upper GI), and pain in the chest (pleuritic), shoulder, and right or left upper quadrant (upper abdomen), all of which may or may not be cyclic. The rarer but more serious and potentially life-threatening conditions of catamenial pneumothorax, hemopneumothorax, chest wall lesions, and lung parenchyma can also cause similar symptoms and sometimes occur concomitantly with diaphragmatic endometriosis as a result of diaphragmatic defects caused by the necrotizing effects of endometriotic lesions. (4 , 5 )

Congenital defects or fenestration of the right hemidiaphragm can also contribute to the development of diaphragmatic endometriosis, as well as in surrounding areas of the chest, lung, and pleural cavity. For these reasons, these conditions should be ruled out during any diagnostic investigations. Although rarer still, with fewer than 20 cases reported in the literature, liver endometriosis should also be a part of differential diagnoses, as it too can cause cyclic upper abdominal pain. ( 6 , 7 )

The good news about diaphragmatic endometriosis is that after thorough surgical treatment, studies have found that it is far less likely to recur than other forms of the disease. (4 ) While most implants are superficial and cause no discomfort, others can be deeply infiltrating, including cases of full thickness infiltration. In one of our studies, 29% of our patients had deeply infiltrating implants. (8 ) In more serious cases like these, the lesions can cause multiple small perforations which need to be surgically repaired.

Although lesions can present with varying colors and morphologies, the most common form appear to be those which have a bluish cast to them, as demonstrated by Figure 1 below. However, others have reported purplish-red lesions.

Other common features
As you’ve probably heard by now, most lesions occur on the right side, a propensity which many cite as the central supporting evidence for Sampson’s retrograde menstruation theory of pathogenesis. However, lesions have been found on all parts of the diaphragm, such as its phrenic nerve, as well as adjacent structures. Sometimes lesions are bilateral, while others form on just one side. And, sometimes the majority of lesions present anteriorally, where they lie hidden behind the liver. Given such a wide variation in locations, the entire diaphragm and adjacent areas must therefore be thoroughly investigated.

Preliminary steps for determining a treatment plan
For those who are not symptomatic but who have been diagnosed with any of these extragenital forms of endometriosis incidentally, some recommend to take an expectant approach with no further intervention, unless symptoms later occur. (9 ) However, for those patients who are symptomatic, surgery has proven beneficial when other medical interventions have otherwise failed. (7 , 10 , 11) If proceeding with surgery, however, one must take care to counsel patients well about their other options because injury can occur to the diaphragm, phrenic nerve, lungs, vessels, or heart. And, as with any other procedure, care should be individualized, taking into consideration the patient’s goals, age, medical condition, etc, as well the practitioner’s experience and availability of appropriate inter-disciplinary consultants.

A few key protocols in surgical management
While diaphragmatic endometriosis presents many unique challenges, we thought we would focus on just a few key protocols that we’ve relied on over the years to help us navigate through these especially tricky anatomical landscapes.

The first issues to address are concerns about access and visualization of the upper abdomen and the diaphragm’s entire surface. We would like to urge our community to not let these particular concerns be reasons to resort to laparotomy, which is known to most likely cause the painful and potentially intestinal-obstructing thick vascular sorts of adhesions in more than 93% of cases. (12 , 13) By resorting to laparotomy, one treatable problem would be exchanged with another potentially disabling one.

To avoid all the headaches that laparotomies can come with, the first step is to consult with an endoscopic surgeon experienced in upper abdomen procedures. Surgeons with sufficient experience will be able to utilize several different techniques and devises to help obtain a clear view of the diaphragm and adjacent areas. For example, the patient’s position can be changed during surgery, so that the diaphragm’s surrounding organs fall away from it enough so that one can see parts that would be otherwise obscured. As well, surgeons can add more port holes (the tiny incisions in which the laparoscopes are inserted) in the upper abdomen so that better visualization can be obtained. More advanced surgeons can even rely on highly specialized techniques, such as resecting the falciform ligament or using the laparoscopes to gently move the liver and stomach away from the diaphragm so that it can be better visualized. In fact, we routinely deploy these and other minimally invasive strategies in oncological gynecology, when it’s often necessary to debulk diaphragmatic metastatic disease which sometimes requires partial resections of the diaphragm and mesh placements. (14)

As for excisional techniques, it depends on many factors, including the nature of the lesion itself. However, the most essential consideration is complete removal of endometriosis. Randomized controlled studies have shown that thorough eradication of the disease is the only variable consistently associated with any measureable reductions in pain and recurrence rates. (15 , 16) And, contrary to common misconceptions, it makes no difference which technique is utilized; vaporization, ablation, hydrodissection, and scissors excisions have all proven to be effective methods. There are also many devises that can be used for complete excision, all of which have their own advantages and disadvantages. For example, compared to monopolar instruments, the laser has proven especially safe and useful for excising or otherwise eradicating both superficial and deeply infiltrating endometriosis, since it poses no danger of having its energy heat arc out in erratic ways. As a result, laser surgeries are associated with substantially fewer incidence of inadvertent injury to surrounding healthy tissue or organs. (17 , 18 , 19)

The following video of laparoscopic diaphragmatic stripping for ovarian cancer demonstrates several techniques which, even though they’re applied here in an oncological setting, nevertheless can be used for treating diaphragmatic endometriosis as well:

http://www.youtube.com/watch?v=jMXfRW-Whfc .

Of course, surgical outcomes ultimately depend entirely on the skill and experience of the surgeon. This is especially true for those who specialize in treating endometriosis, a field of such complexity and ever-changing paradigms that the only hope we have for staying ahead of such a fast-moving curve is to continuously advance our knowledge in the latest surgical tools and techniques. The availability of proper instrumentation has also proven to be critical, for no matter how great of a pianist you are or want to be, you can’t play if you don’t have a piano or if the one you’ve got is utterly out of tune.

Postoperative medical care depends on whether patients are planning to conceive. For those wishing to become pregnant, there are no further postoperative medical interventions, other than the routine postoperative care and perhaps ART treatments or the like. For patients who are not planning to conceive, they may continue with some sort of hormonal suppressive treatment.

Collaboration with other sub-specialists is crucial
All of these protocols will prove nearly meaningless, however, without the element of multi-discipline collaboration, especially critical for treating such a multi-organ, systemic disorder as endometriosis. For example, even though we were the first to report on the laparoscopic treatment of liver endometriosis and have to our knowledge performed more of these surgeries than any other surgeon or institute, after over 3 decades of experience we have had only 3 such cases. For this reason, we’ve always advocated seeking out collaboration with experts from other fields. The same goes for endometriosis of the lungs, chest wall, and diaphragm, which collectively have accounted for no more than 40 of our cases over the years. Again, even though these 40 cases represent the first and largest number ever treated laparoscopically, it’s still a comparatively small volume relative to the other types of surgeries we routinely perform. Given the rarity of such cases, collaboration with other sub-specialists is therefore an absolute imperative for the safety and well-being of patients. We hope we’ve been able to provide some helpful perspectives on some of surgery’s most complex and contested issues. For further reading on these subjects, please see our list of references below. And, stay tuned for an upcoming white paper on lung endometriosis, which can have similar symptoms as endometriosis of the diaphragm, but which poses even greater potential for dire, life-threatening consequences if not treated correctly.

1) Nezhat C. Nezhat’s History of Endoscopy: A Historical Analysis of Endoscopy’s Ascension since Antiquity. Tuttlingen, Germany: Endo-Press; 2011.

2) Nezhat C. Pelvic pain, infertility, endometriosis: Old diseases, old treatments. Fertil Steril. In press.

3) Nezhat, Camran; Nicoll, Linda M; Bhagan, Lisa; Huang, Jian Qun; Bosev, Dorian; Hajhosseini, Babak; Beygui, Ramin E. Endometriosis of the diaphragm: four cases treated with a combination of laparoscopy and thoracoscopy. Journal of Minimally Invasive Gynecology. 2009; 16(5):573-80.

4) Nezhat C, et al. Bilateral Thoracic Endometriosis Affecting the Lung and Diaphragm – Case Report. In press. JSLS.

5) Endometriosis: Science and Practice. Linda C. Giudice, MD, Johannes L. H. Evers, David L. Healy.

6) Nezhat, C. et al. Laparoscopic management of hepatic endometriosis: report of two cases and review of the literature. Journal of Minimally Invasive Gynecology 12, 196-200 (2005).

7) Nezhat F, Nezhat C, Levy JS. Laparoscopic Treatment of Symptomatic Diaphragmatic Endometriosis: A Case Report. Fertil Steril, Vol. 58, No. 3, Pp: 614-616, 1992.

8) Nezhat’s Operative Laparoscopy, 3rd ed. Cambridge Press. 2005. p 289-291.

9) Falcone T, Lebovic DL. Clinical Management of Endometriosis. Obstet Gynecol. 2011;118(3):691- 705.

10) Nezhat, C. C., Seidman, D. D. S., Nezhat, F. F. & Nezhat, C. C. Laparoscopic surgical management of diaphragmatic endometriosis. Fertility and Sterility 69, 1048-1055 (1998).

11) Mangal, R. R., Taskin, O. O., Nezhat, C. C. & Franklin, R. R. Laparoscopic vaporization of diaphragmatic endometriosis in a woman with epigastric pain: a case report. Journal of reproductive medicine 41, 64-66 (1996).

12) Parker MC, Ellis H, Moran BJ, Thompson JN, Wilson MS, Menzies D, McGuire A, Lower AM, Hawthorn RJS, O’Brien F, et al. Postoperative adhesions: Ten-year follow-up of 12,584 patients undergoing lower abdominal surgery. Diseases of the Colon & Rectum. 2001; 44(6):822-9.

13) Redwine DB. Diaphragmatic endometriosis: diagnosis, surgical management, and long-term results of treatment. Fertil Steril. 2002; 77(2):288-96.

14) Nezhat FR, DeNoble SM, Liu CS, Cho JE, Brown DN, Chuang L, Gretz H, Saharia P. The safety and efficacy of laparoscopic surgical staging and debulking of apparent advanced stage ovarian, fallopian tube, and primary peritoneal cancers. JSLS. 2010 Apr-Jun;14(2):155-68.

15) Healey M, Ang C, Cheng C. Surgical treatment of endometriosis: a prospective randomized doubleblinded trial comparing excision and ablation. Fertil Steril 2010; 94:2536-40.

16) Wright J, Lotfallah H, Jones K, Lovell D. A randomized trial of excision versus ablation for mild endometriosis. Fertil Steril. 2005; 83(6):1830-6.

17) Sutton CJ, Pooley AS, Ewen SP, Haines P. Follow-up report on a randomised controlled trial of laser laparoscopy in the treatment of pelvic pain associated with minimal to moderate endometriosis. Fertil Steril 1997; 68: 1070–4.

18) Luciano AA, Whitman GF, Maier DB, Randolph JF, Maenza RM: A comparison of thermal injury, healing patterns and postoperative adhesion formation following CO2 laser and electromicrosurgery. Fertil Steril.1987;48:1025-1029.

19) T, Vilos GA: A comparison between laser surgery and electrosurgery for bilateral hydrosalpinx. Fertil Steril. 1985; 44: 846.

Pain, Redefined

quotes CORRECT Pain-with-menstruation

“Pain with menstruation is not normal.
Pain with bladder function is not normal.
Pain with bowel function is not normal.
Pain with sexual relations is not normal.
Pain with sitting-standing-moving-breathing is not normal.

Pain with basic biological functions is not normal and deserves to be investigated by a caring physician who believes you.”

– Dr. Camran Nezhat
#EndometriosisAwareness #EndoMarch

Dear President Obama

Dear President Obama:

We would like to thank you very much for supporting the 21ST Century Cures Act and spearheading the Precision Medicine Initiative, policy measures that would surely help usher in a new era of improved health outcomes for our nation’s citizens.

However, we would like to bring to your attention the plight of the 8-10 million American citizens who suffer from endometriosis, a potentially devastating disease which we believe has been left out of these health policy conversations.

Endometriosis is an incurable, estrogen-dependent chronic disease that can potentially cause incapacitating pain, organ damage, infertility, and other severe and sometimes life-threatening medical consequences if inadequately treated. In fact, endometriosis (and adenomyosis) is the third leading cause of gynecologic hospitalization and is the leading cause of the estimated 600,000 hysterectomies performed each year in the U.S.

Although one rarely hears about it in the news, endometriosis is actually common, affecting at least an estimated 1 in 10 women and girls; that’s roughly 8-10 million in the U.S., 200 million worldwide, and about eight times the prevalence of autism. While endometriosis most commonly affects the reproductive system, it can develop on and cause damage to essentially every part of the body, including to the lungs, bladder, bowel, diaphragm, nerves, muscles, kidneys, and blood vessels.

Thanks to the tireless awareness efforts by patients themselves, endometriosis is also finally being recognized as one of the most painful chronic diseases on record, causing pain levels reported to match or exceed those of child birth labor, heart attacks, kidney stones, and appendicitis. And, though theories abound, the cause of endometriosis is still unknown and there is no cure.

Eve’s Curse
There’s also the staggering weight of institutional inertia standing in the way that has made it difficult to uproot the many medical mythologies  about endometriosis that have stood unchallenged for centuries. For example, for thousands of years, endometriosis pain has been accepted as normal. Thus, mothers teach their daughters that it’s normal, and teachers from high school to medical school teach their students that it’s normal. And, because those suffering from this poorly understood disease have been historically stigmatized, many have been too ashamed to speak up about their condition or have been discouraged from seeking medical care.

Urgent Yet Ignored Public Health Issue
As a result of these lingering myths and ancient taboos still making menstruation practically an untouchable topic, endometriosis continues to be one of the most urgent yet ignored public health issues of our time, and those afflicted face unacceptably lengthy diagnostic delays of up to 10 years – or sometimes even longer.  The end result is that millions of women and girls suffer for years with excruciating pain and preventable organ damage before receiving the proper medical care that they need.  By the time those afflicted do receive a proper diagnosis, sometimes it’s simply too late; organs and fertility and lives will have already been severely, and often irreparably, damaged.

The EndoMarch Movement
This is truly a concerning public health issue that needs to be addressed, which is why dozens of endometriosis organizations and support groups from around the world joined together to organize a global awareness initiative – the Worldwide EndoMarch & World Endometriosis Day – which now has over 25,000 supporters across the globe and chapters in 50+ countries and counting.

How You Can Help
We’ve certainly come a long way since the days when endometriosis was referred to as the ‘career woman’s disease’ or ‘Eve’s Curse.’ However, we still could use your help. With gynecologic diseases still steeped in stigma, it’s been an uphill battle to get the issue of endometriosis covered in mainstream news outlets. That’s why we hope you’ll consider championing our cause by including endometriosis in the conversations happening now at the Precision Medicine Initiative summits and 21st Century Cures Act meetings. Women and girls with endometriosis need a cure, non-invasive diagnostic tests, awareness initiatives in public schools, and increased funding for endometriosis research.

Endometriosis Activists of Note
Endometriosis sufferers in particular have been the driving force behind the EndoMarch movement, making great sacrifices to travel long distances to attend the annual EndoMarch events, even though many are often in excruciating pain or just recovering from their third or fifth or tenth surgery.  I cannot think of any group more deserving of your support and we hope you will join us, so that, together, we can be the generation that finally takes a stand against endometriosis.  In so doing, you would become the first President in U.S. history to address one of the most neglected women’s health issues of our time, a change that would indeed finally help deliver 21st Century medicine to the millions who’ve been living in the shadows of silence for far too long.

Thank you very much for taking time to consider our cause.

Very Respectfully,

A Concerned Citizen, Endometriosis Activist & EndoMarch Member
Worldwide EndoMarch | World Endometriosis Day
www.endomarch.org  | info@endomarch.org


Even the ancients knew…

That endometriosis is a whole body disease….

quotes endo whole body disease april 2016

For many years, Dr. Nezhat has been spreading the word that endometriosis is a whole body disease, an understanding that even Hippocratic physicians from 2,500 years ago had come to believe about an endometriosis-like disease they called “strangulation of the womb.” Similar observations were made by physicians from more than 300 years ago, including from the preeminent 17th century physician, Thomas Sydenham.

Yet, despite the ancient observations and endless trails of whole-body somatic destruction so plainly – and histopathologically – evident in modern times, many today still somehow overlook all the signs and symptoms that have stretched back for centuries. It seems to be a clear-cut case of “what the mind doesn’t know, the eye doesn’t see.” In the next phases of our team’s awareness work, we’ll do our best to help bring (back) the ancient understanding – that endometriosis is a whole body disease – out from the fringes and to the forefront of medical and societal discourse.



How many more women and girls will be harmed before #endometriosis is recognized as an urgent public health issue? Sadly, it seems, apparently a lot more than the 200 million worldwide who have already been living lives awash in anguish – and permanently disabled in some cases – because of this devastating disease.

How many more women and girls will be harmed before #endometriosis is recognized as an urgent public health issue?

Let’s be the generation that puts an end to this appalling, centuries-long status quo, which has left millions of women and girls suffering unnecessarily – without a proper diagnosis or adequate medical care – for up to 10 years in some cases; or sometimes even longer.

Let’s be the generation that says enough is enough to colossal surgical and pharmaceutical failures – happening on a massive global scale – that have left millions of women and girls permanently disabled – and thereby driven to such despair, that some end up committing suicide  – at a rate that is significantly higher than the general population.

Let’s be the generation that says it’s absolutely unacceptable – indeed scandalous – to let the federal systems that our taxpayer dollars pay for, stand idly by, when they are supposed to be protecting patients from such serious and tragic adverse medical outcomes as these.

Sign this petition – Coming Soon!
Write to the media.
Contact your elected officials.
Or click here for other immediate actions you can take to stop the silence now.


These are the faces of endometriosis sufferers and supporters from around the world who are organized on a global level and coordinating to launch international social media campaigns, to put a stop to the silence.

Thank you to all of the EndoMarch Chapter Presidents, Precinct Managers, Committee Chairs, Ambassadors, Country Captains & Partners, and other EndoMarch volunteers who are making this impactful ENDO QUILT project happen. (And a special shout out to TEAM SPAIN for sending in the most pictures so far! Wow and thank you from Team USA!!). 


We’d like to take a moment to express our immense gratitude to and admiration of the TEAM USA & TEAM INTERNATIONAL EndoMarch chapter representatives & founding members. Despite the odds, despite the staggering weight of institutional inertia standing in the way, these are the indomitable few who rushed in to fight for justice where others feared to tread. One day historians will know the names of these fearless, selfless activists. We are so proud of our teammates and we will keep marching alongside of you until the “empire of medical mythology is shorn of its power to imperil people’s lives.”

Indeed, we are the generation that finally said, enough is enough. Go Team End Endo!




Trail of Somatic Destruction: This is Your Body on Endometriosis

Endometriosis is a chronic estrogen-dependent disease that can potentially cause incapacitating pain, organ failure, infertility, and other severe medical consequences. It was described in medical literature more than 300 years ago and was even alluded to in ancient medical texts from nearly 4,000 years ago. And, far from being a rare disease, it’s estimated that as many as 200 million women and pubescent girls from around the world have endometriosis.

For centuries the symptoms of endometriosis have been dismissed as a supposedly normal part of womanhood, nothing more than painful periods or cramps. However, endometriosis is a serious disease which can lead to serious medical consequences if inadequately treated. In fact, endometriosis actually shares some features with non-fatal cancers, such as the ability to spread throughout the entire body, potentially causing irreparable damage and disability (for an example of a non-fatal cancer, see http://www.ncbi.nlm.nih.gov/pubmed/11880756). Recently, one study even cited endometriosis as one of the top ten most painful medical conditions.

While it’s true that extreme, incapacitating pain with menstruation is one of the most common symptoms of endometriosis, it can also cause chronic and disabling pain in essentially any region of the body and at any time during the month. Subfertility/infertility, excruciating pain during sexual intercourse, silent kidney loss, searing lower back, hip and leg pain, and severe bowel and bladder dysfunction are among other symptoms experienced by women with endometriosis. Endometriosis has been found in every organ and anatomical structure in the body except the spleen. However, the lower abdominal cavity (pelvic cavity) is the most common general area where endometriosis occurs, and the most common cites include the peritoneum (lining of the pelvic area), rectouterine pouch (also called the Pouch of Douglas or cul-de-sac), rectovaginal septum, uterosacral ligaments, ovaries, fallopian tubes, all over the outside of the uterus, including underneath it and behind it, the appendix, bowel, bladder, and rectum. Meanwhile, adenomyosis, thought to be at least a cousin of endometriosis, if not simply another form of the disorder, occurs when endometrial glands, putatively from the basal layer of the endometrium, invaginate into the muscular wall (myometrium) of the uterus itself.

In the broadest terms, many researchers hypothesize that the body’s immune system recognizes that these endometriotic growths are not growing where they should and therefore launches an immune response in order to destroy them. (Others believe that the immune system does not recognize them until it’s too late). As a result of this continued battle between endometriosis and your body’s immune system, the cytokine-prostaglandin response, inflammation, and other immune system factors appear to become chronically dysregulated.

It’s a classic vicious cycle. Partially as a result of this immune response and other factors, severe pain with menstruation, chronic pain independent of menstruation, inflammation, subfertility, infertility, tissue necrosis, and scar tissue (adhesions) can develop. In severe cases, endometriosis causes such extensive damage that serious complications ensue, like life-threatening bowel obstruction, bladder dysregulation, kidney dysfunction, silent loss of kidney, collapsed lungs, and destruction of the ovaries and fallopian tubes.

Meanwhile, scar tissue formation also damages organs by encasing them together in abnormal ways -in a sense strangling them – which, in severe cases, leads to the so-called frozen pelvis which can cause chronic pain and even loss of organ function. Like the rogue agents that they are, it appears that these clever little endometriotic growths can also reprogram genetic pathways, allowing them to continue migrating throughout the body and even produce their own hormones, nerves, and blood supply. It’s as if endometriosis is determined to live and will do anything to ensure its own survival. In this sense, endometriosis behaves in similar ways as some cancers, even though it’s classified as a benign condition. (Endometriosis does, however, increase the risk of certain cancers). A combination of genetic predisposition, epigenetic mutations, stem cell dysregulation, immune system dysfunction, and environmental triggers have all been proposed as potential factors in the pathogenesis of endometriosis.

Through all of these potential pathways, endometriosis can be a progressive disease; that is, it can continue to grow throughout the body and become worse, despite medical and/or surgical interventions and even if the uterus and ovaries have been surgically removed. Unlike normal endometrial cells found in the lining of the uterus, these errant endometriotic growths do not get expelled from your body each month as a period. Instead, many (but not all!) of these aberrant growths implant and begin reacting to the monthly hormones that trigger menstruation, causing them to bleed and shed and grow, month after month and year after year if left untreated. Although these endometriotic growths are benign (not cancer), it appears that the body still recognizes that they shouldn’t be growing outside of the uterus, and therefore usually launches an inflammatory response in order to try to destroy them. As a result, the affected areas become extremely inflamed and therefore potentially extremely painful. This chronic pro-inflammatory environment eventually leads to elevated cytokine-prostaglandin levels which contribute to the chronic pain. Blood and pus-filled endometriotic cysts may also form, which can become twisted (called torsion) and/or burst open and cause still more pain, bleeding, infection, and another cascade of acute inflammatory responses. Endometriosis can also grow directly onto nerves, which can cause excruciating pain, similar to the way that the nerve-invading disorder shingles does.

As mentioned, endometriotic growths can generate their own supply of blood vessels and nerves, which increases the number of pain receptors and therefore contributes to heightened pain responses. Eventually, scar tissue and other symptoms of endometriosis develop. In fact, scar tissue itself can cause severe pain. For example, in cases when endometriosis has invaded the ureters, scar tissue can cause these organs to close up (constrict), which can lead to severe kidney infections and an inability to completely void when urinating. Bowel endometriosis, on the other hand, can cause severe bowel obstructions and/or tiny perforations (holes), allowing the contents of the bowel to leak out into the pelvic cavity, which can cause an extremely painful, life-threatening medical emergency. In severe cases endometriosis can even completely destroy organs. For example, while most know that endometriosis can totally destroy the ovaries, in rare cases some women have even lost a kidney due to this confounding disorder. In rare cases endometriosis has been found in or on the heart, brain, skin, spine, eyes, liver, kidney, and lungs.

Other incredibly confounding aspects to treating those with endometriosis is that there can be a host of comorbidities or unrecognized surgical complications that the patient may have, which can also cause chronic pelvic pain. For example, ovarian remnant syndrome, non-endometriotic ovarian cysts,adenomyosis, ovarian torsion, ovarian hyperstimulation syndrome, adhesions, vulvadynia, chronic obstructive uropathy, fibroids,degenerating fibroids, fibroid torsion, pyelonephritis, fistulas, hernias, post-hysterectomy disorders, appendicitis, inflamed fallopian tubes (endosalpingiosis, salpingitis, etc.), ureterohydronephrosis, post-surgery pain from unrecognized complications, endometritis, adhesion-induced bowel obstructions, post-surgery bowel disorders, abdominal wall disorders, irritable bowel syndrome, severe proctitis, rectovaginal fistulas, rectus sheath hematoma, celiac disease, diverticulitis, colitis, Chrohn’s disease, gastroenteritis, ulcerative colitis, urinary tract obstruction, hydroureter, interstitial cystitis (also called painful bladder syndrome), bladder cystocele (prolapsed bladder),rectocele (prolapsed rectum), other prolapsed organs,neurogenic bladder, other neurogenic pain, other genitourinary disorders, pain from the muscles of the abdominal wall, bladder, or bowel, other pain from other muscles or joints (myofascial pain), pelvic floor disorders, pudendal neuralgia, , urethral disorders, ectopic pregnancy, post-childbirth complications, pelvic inflammatory disease (PID), other infections, chronic pelvic pain syndrome, endometrial hyperplasia, cervical stenosis, irradiation damage, infected or displaced intrauterine device (IUD), gynecologic malignancies, and many other conditions can be associated with chronic pelvic pain or co-exist with endometriosis.

Suffice it to say, this is certainly an unwieldy list, and, it isn’t even comprehensive! With so many potential disorders to sort through, this is why we encourage you to seek out a chronic pelvic pain specialist with expertise in recognizing these and dozens of other disorders that may be contributing to your pain.

How endometriosis spreads – or whether it even does! – is a highly contested subject. Like many other diseases, its pathogenesis is likely multi-factorial. For example, many believe endometriosis can spread through the blood stream – hematogenously as the scientists like to say – or through the lymphatic pathways. Of note, these are the same pathways that most metastatic cancers take to spread – i.e. metastasize – to other parts of the body. And herein lies the controversy, because some scientists are hesitant to use the term ‘metastasize’ when referring to a benign condition like endometriosis. There is much more to be said on this subject, entangled as it is in a seething cauldron of academic debate. However, we’ll sign off for tonight to return to EndoMarch affairs, but we will revisit these and other popular hypotheses next time.

Thank you to a Facebook friend, who recently re-posted this long-forgotten white paper of sorts, written a few years ago by Barbara Page for Dr. Camran Nezhat’s website. It’s a compilation of a few different pages from http://www.nezhat.org, which can be found here and here and here.


Dear EndoMarch Supporters, Volunteers, Chapter Presidents, Precinct Managers, Ambassadors, and Country Captains:

Thank you all for your continued interest and support of the Worldwide EndoMarch. We would like to share some good news with everyone. Since first announcing the Worldwide EndoMarch in 2013, we set several goals to accomplish in the next ten years, including:

1) Worldwide Awareness of Endometriosis:
We hope endometriosis becomes as recognized by the general population as is diabetes and hypertension, which will help reduce diagnostics delays.

2) Endometriosis Education in Public Schools and Universities

3) Discovery of a non-invasive test to diagnose endometriosis

4) Research into potential preventive measures

5) Collaboration with medical schools and societies to bring advanced training to the forefront of their curriculums

6) And finally, discovery of a cure for endometriosis

We are on our way toward making impressive changes regarding endometriosis awareness, as is evident by the recent uptick in media attention. Endometriosis affects young girls and women of all ethnicities and we are starting to hear more about the global impact of this disease. As such, we’ll continue expanding globally so that there can be chapters around the world, led by passionate advocates who are dedicated to making a difference. Toward this end, we now have on board EndoMarch representatives from China, the most populous country in the world, who have held three EndoMarch events and educational symposiums this year alone, and are in the process of planning their forth one for the 2015 year. Cyprus has also just recently joined the EndoMarch, and in the U.S.A., a steady stream of individuals, medical professionals, schools, universities, and organizations join the cause daily, so that we can all work together to bring the needed attention to this perplexing disease that has devastated so many people’s lives.

As we have been saying for years, endometriosis is a disease of adolescence. As such, endometriosis education in schools & universities also remains one of our highest priorities. Toward this end, we have worked hard to recruit & train nationwide and international teams of Education Ambassadors & Community Partners, who are now establishing education programs in schools and universities across the U.S. and throughout the world, using curriculum created by our team of endometriosis experts.

Concerning collaboration with medical schools and societies, we are very excited to announce that the Society of Laparoendoscopic Surgeons (SLS), the largest, multi-disciplinary minimally invasive surgery society in the world, has for the first time ever, established a fellowship program specifically for endometriosis, to train the future generation of specialists. (Since endometriosis affects so many different organs and tissues of the body, the multi-disciplinary nature of this fellowship will really begin to make a difference). You can click on the following link to learn more:


Concerning progress on finding a non-invasive test, we share again with you the recent NIH report on groundbreaking achievements in this area:


Thank you again for your passion and dedication to improving the lives of millions of women and young girls around the world. With your continued support and involvement, we know we’ll truly be able to make a difference.

Forward We Go,

Camran Nezhat, MD, FACOG, FACS
Farr Nezhat MD, FACOG, FACS
Ceana Nezhat, MD, FACOG, FACS
Azzi Nezhat, MD, FACOG
Founders and Supporters of Worldwide EndoMarch

Devastating Disease Still Largely Ignored

One day in the future, when someone invents a Geiger meter-like devise to measure pain in quantifiable units, the world would finally know the truth; that endometriosis pain is truly off the charts, so absolutely mind-blowing that women and girls cannot even move, so absolutely excruciating that the afflicted are rendered unconscious, crushed to the floor by staggering shockwaves of unimaginable pain. Despite the millions living in such an unending abyss of unbearable anguish, endometriosis continues to be one of the most urgent yet ignored public health crises of our time. Hundreds of years from now, future generations will look back at this time in history with utter disbelief (and disgust) that such profound suffering could have been ignored for so long by so many.

Let’s be the generation that ends this nightmare once and for all. Email us at info@endomarch.org to join the fight to end the silence about endometriosis, as well as the social injustice of gendered medicine, a factor which contributes to the significant disparities in research funding and health outcomes we continue to see in women’s medicine.

4,000 Years is Long Enough!

The medical history article called ‘Endometriosis: Ancient Disease, Ancient Treatments’, by Drs. Nezhat et al, was actually the catalyst for the EndoMarch. It was the first article published in a peer-reviewed journal to uncover evidence that many cases of so-called hysteria, the now discredited psychological disorder of lore, may well have been endometriosis all along. Several other disease profiles from pre-modern times were also identified for the first time as sharing striking similarities with endometriosis symptoms, including the so-called disease of virgins, love sickness, furor uterinus (uterine fury), strangulation of the womb, suffocation of the womb, catamenial hematoceles, and many more. The article even found that the retrograde menstruation hypothesis (aka, Sampson’s Theory), once the darling theory of the 20th century, was nothing new: As early as 1697, Dutch Anatomist Ruysch (and others before him) proposed it as a possible cause of a mysterious endometriosis-like disease he was studying at the time.

These and other fascinating details can be found in the following summary of the article:

Demons, witches, madhouses, and leeches
Dr. Camran Nezhat’s et al recent medical review of history dating back nearly 4,000 years has found evidence of women with endometriosis-like symptoms being subjected to ghastly treatments involving leeches, straight-jackets, bloodletting, caustic chemical douches, genital mutilation, being hung upside down, astronomical numbers of surgical fatalities, and even accused of demonic possession and killed – all because their crippling yet invisible pain was so misunderstood by medicine and society alike.

Mad, immoral, or imagining it all
Another surprising finding is that it seems we have gone backward in terms of treating chronic pelvic pain. Nearly 2,500 years ago the Hippocratic doctors recognized chronic pelvic pain in both women and teenage girls as an organic disorder deserving of compassionate treatment. Yet, by the Middle Ages women with chronic pelvic pain were accused of being mad, immoral, or imagining it all. And, teenage girls were viewed as simply misbehaving cranks. Sound familiar? So-called “bad behaviors” like reading too many books, eating too much, exercising too little, or expressing sexuality were presumed as causes of their pain. They were ridiculed in literature by the likes of Shakespeare and were accused of faking their symptoms in order to malinger, manipulate, or shirk work.

Freud was wrong; the pain was real
Even prominent thinkers like Freud began subscribing to some of these myths, necessitating the invention of imaginary illnesses like hysteria. In fact, one of the paper’s most significant findings was that hysteria, the now discredited mystery disorder presumed for centuries to be psychological in origin, was most likely endometriosis in the majority of cases. In other words, Freud was wrong; the pain was real. The authors found that this centuries-old notion linking chronic pelvic pain to mental illness exerted tremendous influence on attitudes about women with endometriosis in modern times, contributing to diagnostic delays and chronic indifference to their pain for most of the 20th century.

Most colossal mass misdiagnosis in human history
As Dr. Nezhat noted, such mistreatment constitutes one of the most colossal mass misdiagnoses in human history, one that over the centuries has subjected women to murder, madhouses, and lives of unremitting physical, social, and psychological pain. Faced with such injustices, historical records demonstrate that women with endometriosis have been contemplating or committing suicide for centuries.

After 4,000 years, little progress
Women have truly paid a staggering price for this appalling indifference, for at least 4,000 years and counting. It is in part because of this shameful legacy that even today endometriosis is, for the most part, still an enigma, and treatments have remained essentially the same for centuries, with only minor variations. By documenting the fact that such mistreatment has been going on for thousands of years, Dr. Nezhat and his team hopes this research will serve as a wake-up call. Clearly, something has to change; something must be done to end this centuries-long saga of unconscionable inaction. As the authors conclude:

“The clock is definitely ticking, as we know millions of women still live lives awash in anguish, just as they did thousands of years ago and just as they will centuries from now unless we steer ourselves faster toward the long-elusive cure. Four thousand years is long enough; the time has come to end the empire of endometriosis.”

Click HERE for the PowerPoint
Click HERE for full article