Kimberli is one of our new Endo Ambassador, she has a story to tell and she will help us to raise the awareness about Endometriosis:
Please visit her her blog:
Kimberli is one of our new Endo Ambassador, she has a story to tell and she will help us to raise the awareness about Endometriosis:
Please visit her her blog:
Dear EndoMarch Supporters, Volunteers, Ambassadors, and Team and Country Captains:
On behalf of all of us at Worldwide Endometriosis March and Endometriosis Day Headquarters, I would like to sincerely thank you all for your continued support of the Worldwide Endometriosis March (EndoMarch) and its mission to bring awareness to endometriosis all around the world. We have only a days until the Endometriosis Day and the 4th Worldwide EndoMarch, the leading movement in the US and around the world, to March and end the silence for endometriosis.
In the United States, we will host our national event in San Francisco. We would like to express our gratitude to Dr. Robert Wah (Past-President, American Medical Association), Dr. Linda Giudice (President, World Endometriosis Society), and Dr. Paul Wetter (Chair, Society of Laparoendoscopic Surgeons) who will join us once again, and who have all attended our Marches for the past three years. In Washington DC, Howard University will host our event and our appreciation goes especially to Dr. Hal Lawrence (Chief Executive Officer, American Congress of Obstetricians and Gynecologists) Dr. Alan DeCherney (NIH: Child Health and Human Development) Dr. James Robinson (MedStar Washington Hospital Center) Mr. Sean Tipton (Chief Advocacy, Policy and Development Officer, American Society for Reproductive Medicine), Dr. Kevin Smith (Kaiser Permanente Mid-Atlantic Group), who will join us again in our Educational Symposium.
Only three years have passed since our first Annual Worldwide EndoMarch in Washington DC, and the grassroots movement is taking off by leaps and bounds. This year for our 4th Annual Worldwide EndoMarch, cities in the United States will be holding marches from coast to coast, from San Francisco and Los Angeles to Washington DC, and everywhere in between, from Kentucky to Minnesota. We are hardly alone, though, in our growth within the US and we are pleased to announce that we have more countries, states and cities joining us for our global movement, including Switzerland, Barbados,Canada South Alberta, Stockholm-Sweden, Germany-Schweinfurt, Hong Kong, along withWorldwide EndoMarch Team Argentina, Worldwide EndoMarch Team Australia Adelaide High Tea, Worldwide EndoMarch Team Australia Brisbane High Tea, Worldwide EndoMarch Team Australia Canberra High Tea, Worldwide EndoMarch Team Australia Gold Coast High Tea, Worldwide EndoMarch Team Australia Hobart High Tea, Worldwide EndoMarch Team Australia Melbourne High Tea, Worldwide EndoMarch Team Australia Newcastle High Tea, Worldwide EndoMarch Team Australia Perth High Tea, Worldwide EndoMarch Team Australia Sydney High Tea, Worldwide EndoMarch Team Australia Wollongong High Tea, Worldwide EndoMarch Team Austria, Worldwide EndoMarch Team Barbados Bridgetwon, Worldwide EndoMarch Team Barbados St.Michael, Worldwide EndoMarch Team Belgium,Worldwide EndoMarch Team Brazil in 13 cities in 12 different states in Brazil: Sao Paulo, Rio de Janeiro, Belo Horizonte, Florianópolis, Porto Alegre, Campo Grande, Brasília, Boa Vista, Fortaleza, Salvador, Londrina, Maringá, Curitiba, Worldwide EndoMarch Team Canada Alberta, Worldwide Endomarch China, Worldwide EndoMarch Team Cyprus, Worldwide EndoMarch Team Finland, Worldwide EndoMarch Team France, Worldwide EndoMarch Team Greece, Worldwide EndoMarch Team Hong Kong, Worldwide EndoMarch Team Hungary, WorldWide EndoMarch Team Ireland, Worldwide EndoMarch Team Italy, WorldWide EndoMarch Team Jamaica, Worldwide EndoMarch Kuwait, Endometriosis New Zealand, Worldwide EndoMarch Team Nigeria, Worldwide EndoMarch Team Panama, ,Worldwide EndoMarch Team Portugal, Worldwide EndoMarch Team Saudi Arabia,Worldwide EndoMarch Team Spain, Worldwide EndoMarch Team South Africa, Worldwide EndoMarch Team Switzerland, Worldwide EndoMarch Team Uganda, Worldwide EndoMarch Team UK London, Worldwide EndoMarch Team UK Glasgow, Worldwide EndoMarch Team UK Manchester, Worldwide EndoMarch Team UK Cardiff Wales,Worldwide EndoMarch Team Zimbabwe.
Last but not least, each year, Worldwide EndoMarch selects one person who has contributed significantly to those affected by endometriosis, and names him or her the “Endo Hero of the Year.” We would like to Congratulations to Dr. Hal Lawrence, Executive Vice President and Chief Executive Officer of American Congress of Obstetricians and Gynecologists, who will be awarded by the Worldwide EndoMarch as the 2017 recipient of the Endo Hero of the Year award, for his outstanding contributions in the field of endometriosis research and advocacy. Dr. Lawrence joins the previously accomplished honorees, Dr. Linda Guidice, past president of the American Society of Reproductive Medicine, and Dr. Robert Wah, past president of the American Medical Association. Our Hero award to him cannot do justice to how grateful we are for Dr. Lawrence’s contributions to improving patient care. As the leader of the top organization of gynecologists, Dr. Lawrence is committed to implementing healthcare reform so that all women in this country can have access to the care that they need and deserve.
Our leading nominee for the Hero of 2018 is Dr. Paul Wetter, Chairman of the prestigious Society of Laparoendoscopic Surgeons, the largest multidisciplinary minimally invasive surgical society in the world. Among his initiatives, Society of Laparoendoscopic Surgeons has started a subspecialty surgical fellowship for endometriosis, the first ever in any academic setting. He is the pioneer and champion of Open Access collaboration in medical education around the world, he brought together top innovators in minimally invasive surgery to form the influential and highly read journal, JSLS, and is improving the health of millions through his OR Ready global initiative.
Once again, I thank all of you for your selfless dedication to this important cause over the past three years. Please join me to end the silence for Endometriosis.
Forward we go,
Camran Nezhat, MD FACOG, FACS
Farr Nezhat, MD FACOG, FACS
Ceana Nezhat, MD FACOG, FACS
Azadeh Nezhat, MD FACOG, FACS
Founders of Worldwide Endometriosis March and Endometriosis Day
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:
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 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
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.
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.
That endometriosis is a whole body disease….
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?
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?
ENDOMETRIOSIS SUFFERERS HAVE BEEN MISTREATED FOR CENTURIES
THE TIME FOR ACTION IS NOW
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.
THE TIME FOR ACTION IS NOW
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.
#STOPTHESILENCE WALL OF WARRIORS | ENDO QUILT
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!!).
HEROES RUSH IN WHERE ANGELS FEAR TO TREAD
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!
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.
WHOLE-BODY SYSTEMIC DISEASE
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.
CLASSIC VICIOUS CYCLE
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.
REPROGRAMMING GENETIC PATHWAYS
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.
PERNICIOUS, PROGRESSIVE DISEASE
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.
COMORBIDITIES AND/OR UNRECOGNIZED SURGICAL COMPLICATIONS
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 DOES ENDOMETRIOSIS SPREAD – OR DOES IT?
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.
Katja Uttinger is an amazing advocate, Endo Sister, and EndoMarch Precinct Manager for the Schweinfurt Chapter in Germany. Here are excerpts from her recent interview with us!
ENDOMARCH STAFF: Greetings to you from all of us on Team USA! We would love to learn more about you and your work. Would you mind to tell us a little about yourself!? For example, how long have you been battling endometriosis? Was there a particular experience or epiphany during your endo journey that influenced your decision to become an Endometriosis Advocate?
KU @ TEAM GERMANY-SCHWEINFURT BRANCH: My name is Katja Uttinger, I am 48 years old and the Precinct Manager of Germany/Bavaria. I was born and raised in Germany. I used to work as a paramedic and medical assistance till 2008. Endometriosis did cost me 4 jobs, since I got fired every time I needed an operation. Then I started working [in] automobile industries, working shifts in productions, where I still work. So far I have had 13 operations and hoping I will not have another one. I do have a beautiful, smart 23-year-old daughter; she is the light of my live! Couldn’t have done it without her! I did have problems with my period since the beginning of my womanhood…about age 13! Never did I think, I did have a disease, nor did my surrounding or family or doctors. I did see my first gynecologist at age 15 because of heavy periods. He would prescribe BC (not even having intercourse yet) to help with the heavy bleeding, which seemed to work for years. After becoming an adult, I would find myself in his office over and over again, because of painful sex. I do not want to write about all the answers he gave me. They were disturbing and cruel. I ended up, thinking I am just not NORMAL! I started looking for answers online, as soon as I got diagnosed with Endometriosis – only to find out, there weren’t any answers! Not in Germany. I did get diagnosed in 2000 during an appendectomy. The surgeon told me I had endo, but it is nothing to worry about, [to] see a gynecologist and you will be okay. Which I wasn’t! From there on, I decided to become a voice for women in Germany, but couldn’t find partners to work with, until I became a member of the Endometriosis Foundation of Germany. In 2013 I read about the EndoMarch and decided to participate in it.
ENDOMARCH STAFF: We are so incredibly grateful for all that you’ve done as a Country Partner for Team Germany for two years in a row! Not only were you part of the team that made history during the inaugural events in 2014, you’ve also been able to achieve even more this year! Are there any special highlights from these past two years that you’re especially proud of and would like to share?
KU: I am very proud of all my Endo-Sisters who supported me! Also one of the highlights was, my “coming out” in the newspaper. I felt released and happy, that everybody knows now, what is “wrong” with me. And all the phone calls from women, or mails, asking about endometriosis, helping out in finding experts to help them! Also EndoMarch 2015 in Schweinfurt was so awesome, I think we had the best speaker – Prof. Dr. Renner from Erlangen – he taught us a lot of things I didn’t know!
ENDOMARCH STAFF: We were so inspired by you when we learned that you were going to stay on board for another year, especially knowing that trying to effect change like this is not easy and doesn’t happen overnight. So, what keeps you going? What inspires you to keep fighting for change?
KU: What really keeps me going is actually right now, the experience I keep having with the local doctors! Being invited to a professional event with guest speakers experts and not attending is driving me insane..lol…I want to get the Ob/Gyns in my area to pay attention to Endometriosis and the women suffering from it! Get to know the symptoms, the treatments and to send them over to specialist to take care of us! We are coming to them to seek help, not pity! We are not sure yet, where we will hold our next event. Could be in Würzburg, where there are a lot of medical universities plus med students, or in Schweinfurt again, maybe even in both towns! Plans are on the way…
ENDOMARCH STAFF: We know (from experience now!) that there are countless obstacles one encounters when trying to organize awareness events like this. However, there are always amazing and unexpected wins, too. What was one unexpected good outcome that you and your team achieved this year, despite the odds?!
KU: Best outcome was actually the recognition of endometriosis in my town and people asking for advice about it: My next door neighbor would finally get operated and diagnosed with endo after years of pain. Girls asking about it; this makes me really proud and gives me the feeling of achieving something. I am also very happy about meeting the right people at the City Hall in Schweinfurt; without them, this could have never been as successful as it turned out. Plus meeting all my awesome endosisters in person for the first time; we developed a great friendship!
ENDOMARCH STAFF: A lot of Country Captains told us that one of the most wonderful outcomes of the EndoMarch experiences these last two years has been having a chance to meet other endo sisters from around the world. What was that experience like for you? Do you have special new friendships that were forged?
KU: Yes definitely; I met so many Endosisters around the world via Facebook and have a lot of support from them! I love them all and some of us are planning to meet one day, just like my best Endosister Eylin Perez from Peru! She is my little sister and I love her dearly.
ENDOMARCH STAFF: Did you get a chance to work with medical professionals from your country again this year? What was that like? Do you think they listened to your concerns? Did they speak at your event? Do you think they’ll be on board for next year?
KU: Well, as I mentioned earlier, I was very lucky to get my specialist Prof. Dr. Renner from Erlangen to speak at my event. He is just awesome and works hard on recognition of endometriosis in Germany. Also my other gynecologist, Dr. Gericke, who did my treatment with Chinese medicine, which has been very helpful with pain! I am still so glad they joined us and did spent their Saturday afternoon for free to support this cause! Not sure yet which doctors we will find for next year, but I have a few in mind! Maybe even Prof. Dr. Renner, but I haven’t asked him yet.
ENDOMARCH STAFF: On the tactical front, any tips that you’d like to share with this year’s new Country Partners? For example, how did you recruit volunteers to join your team? Did you have any luck getting in touch with journalists, elected or government officials? In general, what do you think was the most effective outreach strategy for just getting the word out? What was the least effective strategy?
KU: I did get to meet Diana Fuchs from our local newspaper which was one of my best moments this year! She was very interested and wrote a great article about me; haven’t had the time to do more due to my full-time job. I have talked to on elected government official, but didn’t get any answers yet; still working on that one. I would think that going public with my own personal story was the best I could do and effective. The least effective is to ask for help and having to ask over and over again, even just friends who just don’t want to commit. Don’t waste time asking [again] if their answer isn’t yes the first time! Find somebody else. A big help is also using social media like Facebook. I do not use Twitter or anything else, but Facebook really did a great job finding volunteers!
ENDOMARCH STAFF: Any other highlights you’d like to share?
KU: The amazing donations I got during my planning for printing flyers for example. Even my daughter gave me a cup for endo support filled with money for Christmas. She has been a big supporter! Also my best friend, and oh my God all the Endosisters attending; I was overwhelmed with all the gifts and flowers they brought! Amazing moment, they donated so much, because they want to do this again.
ENDOMARCH STAFF: Thank you so much for taking time out of your busy day to share your experiences!! Team USA salutes you for persevering and contributing so much to the endometriosis community, not only to those in your own country, but to those of us around the world who’ve been so inspired by your team’s hard work and sacrifices. We are honored to have you as a cherished partner in this important cause.
TEAM GERMANY – SCHWEINFURT CHAPTER
If you would like more information about the Team Germany – Schweinfurt chapter, please do feel free to contact Katja or her teammates here:
Contact Katja at firstname.lastname@example.org