The Inconvenient Truth Regarding Endometriosis Advocacy

Women's Health Facts

  •          “Big Pharma” is a term used to describe large companies that make money selling pharmaceutical drugs to patients. 
  •          Medical organizations like the American College of Obstetricians and Gynecologists “ACOG” and the American Society of Reproductive Medicine “ASRM” represent thousands of medical providers that treat patients.
  •         Medical organizations publish practice bulletins based on peer-reviewed science based-evidence and expert opinion. These bulletins summarize current information and provide definitions of and policies regarding medical conditions. These bulletins provide the techniques and clinical management issues that guide the treatments that patients will receive from providers.        
  •          Big Pharma companies finance research which provides a portion of the science based-evidence used in these bulletins.  
  •          Big Pharma companies donate generously to, sponsor, as well as financially support, medical organizations such as ACOG, ASRM, and their providers. ( )
  •         Big Pharma companies and medical organizations donate generously to, as well as financially support, and sometimes even lobby for endometriosis, infertility and other various women’s health and reproductive justice non-profit organizations.  

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For many women’s health issues, there exists a symbiotic relationship between Big Pharma, the medical organizations, the non-profits in the women’s health communities, and the patients that are being served. For instance, Big Pharma, the ACOG, non-profits, and patients all agree that birth control should be legal, affordable, and accessible to all who need it. All parties benefit from this advocacy alignment. Patients who need birth control have access to it, providers and medical organizations have access to more research and treatment options for the services they profit from and Big Pharma makes billions. Non-profit organizations benefit when their community has what it needs and their donors are able to continue to support their efforts.  

A similar alignment appears in the infertility advocacy world. Big Pharma, ASRM, and its members have been very supportive and generous to organizations that help the infertility community. Infertility patients often need access to reproductive endocrinologists and fertility medications to build their families. Doctors and drug companies profit from patients in need.

These are not unique areas of care. Right to abortion, maternal health, PPD awareness and intervention are among some of the many issues that Big Pharma, medical organizations, and non-profits work together to create solutions for in order to respond to the needs of vulnerable patients. 

Real harm arises, however, when you have a vulnerable patient population whose needs do not benefit Big Pharma or the majority of the providers in a medical organization. The harm comes when these medical organizations fail to make policies that will benefit patients, because it will not benefit them. 

Endometriosis is a disease that impacts more than 5 million women in the United States alone. 1 in 10 women have endometriosis. Patients can suffer symptoms of this pervasive, painful disease for the majority of their lives. While endometriosis is often linked to a patient's menstrual cycle, some patients can experience symptoms before they get their period and others experience continued pain even after menopause.  There is no cure. There is a 8-11 year delay in diagnosis . During the 8-11 years, on average that they suffer while awaiting a diagnosis, patients report being dismissed, demeaned, rejected, ignored and misdiagnosed all while struggling with the physical symptoms of endometriosis and the uncertainty of what is happening . The results can be devastating. Many patients arrive at a final diagnosis having suffered devastating losses to their fertility, careers, personal relationships, self-worth, and their hope.

When providers suspect that a patient may have endometriosis, the ACOG practice bulletin currently gives the following directives to treat patients:



Recently, the endometriosis patient community, backed by professional organizations such as the AAGL, petitioned the ACOG to change their practice standards and use all of their available organizational resources to educate their providers and patients. The patient community has asked the ACOG to make robust efforts in shortening the diagnostic delay by teaching their members how to screen patients for endometriosis symptoms and asking about family history of endometriosis or painful periods like they have done successfully for other illnesses. Patients are also asking that the ACOG teach their members to refer endometriosis patients out to surgical specialists who are properly trained to remove this invasive, complex disease like they do for other complex diseases . (see also: ) 

Sadly, our call to action was met with a lack of action. The ACOG was presented an entirely rewritten practice bulletin for endometriosis, reviewed by specialists in the field and built on solid, clinically-evidenced studies. While we were told the revisions, the patient testimonials, expert opinions and the folders of science-based evidence would be "passed along" to the bulletin review committee, we were also told that patient advocates and endometriosis experts will have no part in the review process and can check their website for updates. 

Experts who treat endometriosis and patient advocates agree that early diagnosis and referral to an expert surgical excision specialist, with the support of a multi-disciplinary care team, can not only help save a patients’ fertility, but it can truly save her from decades of suffering. On the petition, patient after patient testifies how their lives have been irrevocably damaged. Patients talk about how practitioners placed them on hormone after hormone for years without investigating the cause for pain.  Patients talk about enduring multiple, ineffective and partial surgeries. Patients talk about undergoing a hysterectomy only to find a specialist who could have preserved their fertility.  Patients, backed by experts in the disease, have urged ACOG to make immediate changes. Hormone medication merry-go-round, repeat, partial surgeries and hysterectomies; who are the real beneficiaries of the ACOG Practice Bulletin if not patients?

It’s not only ob-gyn’s who are missing the mark, but reproductive endocrinologists and the ASRM should be doing more to help endometriosis patients. It is estimated that 40% of women with infertility have endometriosisSeeing as 20-25% of endometriosis patients could be asymptomatic, it is possible that some patients with unexplained infertility could have endometriosis making it more than 40% of women with infertility. Many infertility patients who present with endometriomas are likely to have deep, advanced, fibrotic disease throughout their pelvis, including on their bowels. Are doctors telling patients that? Or are patients being given a quick diagnostic laparoscopic procedure, leaving the majority of the disease inside their pelvis, and then given fertility treatments? How many patients are getting referred to the quality surgical and multi-disciplinary care they need?

While there are studies that show that endometriosis patients can have successful IVF’s without surgery, are doctors educating patients on the true meaning of endometriosis and giving them the tools they need to navigate the rest of their life with a chronic illness? If patients are able to get pregnant and have a baby, does it make not educating them or treating their disease okay? What about patients who cannot get pregnant or are done with fertility treatments? Are these patients being referred to specialists and multi-disciplinary care providers?  More research needs to be done to answer these vital questions to see if the vital needs of endometriosis patients are being met. 

Who is solely looking out for the health needs of the endometriosis patient? Should organizations made up of doctors who are financially benefiting from certain practice policies be the only ones making those policies? Is it ethical for medical organizations to take money from Big Pharma? How do patients know if their doctors are recommending certain treatments because of their financial ties to Big Pharma? Should research funded by Big Pharma be allowed to be included in Practice Bulletins when these companies will benefit financially from policies that encourage certain courses of treatment? While all organizations, including the ACOG, have codes on ethics, in the case of endometriosis treatment, things do not seem so clear.

Standing up to Big Pharma and powerful, political medical organizations like the ACOG and the ASRM isn’t an easy task for the healthiest of people, but it can be especially difficult for endometriosis patients. Endometriosis patients live in chronic pain. Endometriosis patients don’t have access to affordable, appropriate medical care. On top of endometriosis, many patients also struggle with other co-current diseases, including the financial, emotional and physical hardships of infertility.  Major endometriosis non-profits, fertility non-profits and advocates, non-profits dedicated to sexual health care and reproductive justice, other medical organizations like the AMA or the ACS, women’s health law advocates, celebrities or people in places of power or influence should be the ones stepping up and working with endometriosis patient advocates to help revolutionize care and offer protection.  Unfortunately, with a few exceptions, many of these entities are working with and being funded by the medical organizations and Big Pharma.  

Recently, I read a great quote that said, “The opposite of brave isn’t scared. The opposite of brave is quiet.” Is the silence throughout the adjoining women’s health communities regarding the injustices in endometriosis care thoughtless or calculated? It is nicer to think that the absolute silence of these organizations is due to a lack of awareness regarding just how serious the problem is. But the truth is that Big Pharma and medical organizations such as the ACOG and the ASRM donate a lot of money and resources to patient health and advocacy groups.  The urgent crisis that the endometriosis patient community faces continues to be ignored.  

In recent history, we have seen the patriarchal abuses of power start to crumble and women’s voices are being heard more and more.   Change only happens when everyone is willing to stand up to those in power and lend their voice to those who are vulnerable, oppressed and in need. The endometriosis community is in need. We are calling upon patient organizations and advocates that have the mission and resources to protect our livelihoods and our fertility, to stand with us and change these policies that have been causing endometriosis patients so much needless suffering.  The fates and the fertility of millions of patients are in your hands.

What does it mean to stand with Endometriosis Patients?

  •  If you are an endometriosis non-profit, standing with endometriosis patients means that if you or any of your employees or board members take money from the acog or big pharma you do so transparently and honestly share it's possible impact on mission. 
  • If you are an infertility advocate or organization you recognize that at least 40% (or likely more) of those you serve have endometriosis.  You include endometriosis patients and specialists on your boards and make sure 40% of your community is represented in positions of influence in your organization giving a patient voice in organizational programs and initiatives.  You challenge the medical organizations and providers you work with to support policies that would refer patients in need to specialists and multi-disciplinary care providers sooner. You think about endometriosis and include patients on egg freezing initiatives which could help spare their fertility from a disease that has the potential to eat away at their reproductive parts, including the ovaries. 
  • If you are a women's health and reproductive justice organization like Planned Parenthood, you create opportunities to work with endometriosis patient advocates to change internal practices and policies that can help patients attain an earlier suspected diagnosis and greater support.  You also are transparent about your relationships with medical organizations like the acog and use your voice and influence to help pressure them to make the sexual health and wellness for millions of endometriosis patients a priority.  
  • If you are a celebrity with endometriosis or a person with financial and/or political power lend your power and influence to help patients challenge those in power to change harmful policy instead of working for them. You also choose not to be used as a prop for the women's health organizations that are obstructing care to patients or remaining silent.

The endometriosis community is more organized and more educated than ever. Patients are learning to look up their providers and their associations and see if they have links to Big Pharma. Patients are starting to look at major non-profits in the community and see who is willing to fight those in power for needed change and question those who are remaining silent. We are living in a time where our voices and experiences matter more than ever. 

The Problem with the ACOG Website

The ACOG's website reflects what is stated in their practice bulletin. We know there are serious problems with the policies and practices that the ACOG maintains regarding endometriosis. Their website is a tool to help patients and practitioners receive up-to-date guidance on diseases that impact their patients. Having wrong information is quite harmful and not only contributes to the delay in diagnosis that patients face, but also obstructs their ability to get proper and timely care. The ACOG even put forth the wrong definition of the disease on the site. If the ACOG cannot properly define a disease that impacts millions of their patients, how can they possibly assert that they are doing all they can to treat the disease and help patients? 

Months ago, when our community first started talking with the ACOG about the petition and the crisis impacting our community, we alerted them to the issues on their website and even took the time to rewrite the information from a patient centered, multi-disciplinary approach. The ACOG is currently asking for feedback on their website it is our hope that the community takes the time to fill out the survey and implore them to change the information they provide regarding endometriosis. 

For those who are interested, this is what we hoped they would incorporate on their webpage to help patients and professionals treat the disease. 

The following document was created to be used as a guide to update and replace the current information at:

Furthermore, we hope this information can be used to update and replace the current patient pamphlet on endometriosis.

ACOG: Endometriosis Fact Sheet


·         What is endometriosis?

·         How common is endometriosis?

·         Where does endometriosis occur?

·         How does endometriosis cause problems?

·         What is the link between infertility and endometriosis?

·         What are the symptoms of endometriosis?

·         How is endometriosis diagnosed?

·         How is endometriosis treated?

·         How can surgery treat endometriosis?

·         What if I still have severe pain that does not go away even after I have had treatment?

·         Glossary


What is endometriosis?

Endometriosis is a condition in which tissue similar to the tissue that lines the uterus (the endometrium) is found elsewhere in the body.


How common is endometriosis?

Endometriosis occurs in about one in ten women. It is estimated to impact 5 million women in the United States and 176 million women worldwide. Endometriosis has been known to impact patients of all different ages, ranging from pre-teens to post-menopausal women.

Where does endometriosis occur?

Endometriosis most often impacts organs and structures within the pelvic cavity, although endometriosis lesions can be found in distal sites as well. Endometriosis occurs in the following places:

·         Peritoneum

·         Ovaries

·         Fallopian tubes

·         Bladder and ureters

·         Intestines, rectum, appendix, colon, bowel, gallbladder

·         Cul-de-sac (the space behind the uterus), uterosacral ligaments

·         Distal sites can include but are not limited to the lungs, the diaphragm, the sciatic and pudendal nerves and the brain.


How does endometriosis cause problems?

Endometriosis lesions are associated with symptomatic pain and discomfort.  The amount of disease present does not directly correlate to the level of pain a patient will experience. Some endometriosis patients may even present without any symptoms of the disease.  Endometriosis lesions also trigger an inflammatory response from the body. Surrounding healthy tissue can become irritated, inflamed, and swollen often causing scar tissue, called adhesions, to form. Sometimes adhesions can cause organs to stick together. The bleeding, inflammation, and scarring can cause additional pain, especially before and during menstruation, although, some patients experience intermittent pain throughout their entire cycle. Patients who have gone through menopause or had a hysterectomy and/or oophorectomy, as well as patients who are not having a menstrual cycle due to hormone treatments, can still experience endometriosis related pain and symptoms.


What is the link between infertility and endometriosis?

Almost 40% of women with infertility have endometriosis. Inflammation from endometriosis may damage the sperm or egg or interfere with fertilization and implantation. In some cases, scar tissue and adhesions from endometriosis can cause anatomical distortion which may impact fertility.


What are the symptoms of endometriosis?

The most common symptom of endometriosis is chronic (long-term) pelvic pain, especially during ovulation, just before and during the menstrual period. Pain also may occur during sex. If endometriosis is present on the bowel, pain during bowel movements can occur as well as diarrhea and/or constipation. If it affects the bladder or ureters, patients may experience frequent urination or lower back pain. Fatigue, infertility, as well as a family history of endometriosis, may also be indicators of the disease.

How is endometriosis diagnosed?

A health care provider first may take your complete medical history and listen for symptoms of endometriosis.  A physical exam, including a pelvic exam, may indicate any pain or tenderness the patient is experiencing. While vaginal ultrasounds and other imagining, such as a pelvic MRI or CT scan may indicate endometriomas or larger invasive nodules, the vast amount of endometriosis cannot be seen on imaging. While symptoms may indicate where endometriosis could be in the body, the only way to tell for sure that you have endometriosis is through a surgical procedure called laparoscopy.  During a laparoscopic procedure, endometriosis can be identified through removing the suspected tissue and sending it to pathology to be confirmed. This is called a biopsy. Suspected impacted areas of disease and inflammation can also be documented through pictures and video imaging at the time of the procedure. 


How is endometriosis treated?

Through a thorough evaluation of your medical history, your doctor can suspect through the symptoms you are experiencing, if you may have endometriosis and which systems in your body could be possibly implicated. Unfortunately, there is no cure for endometriosis. Pain relievers, such as nonsteroidal anti-inflammatory drugs (NSAIDs), and hormonal medications, including birth control pills, progestin-only medications, and gonadotropin-releasing hormone agonists may relieve symptoms for some patients for a period of time, but these drugs do not get rid of endometriosis tissue.  Surgery is the only option for treating the disease which also permits biopsy confirmation.

How can surgery treat endometriosis?

Surgery can be done to relieve pain and improve fertility. Laparoscopic surgery performed by your gynecologist can help identify the disease.  During surgery, endometriosis lesions should also be removed and biopsied. If you have endometriosis symptoms indicative of invasive disease, or you have had little to no relief from your laparoscopy, you may ask your doctor for a referral to see an endometriosis specialist who has experience in removing the disease using a meticulous, multi-organ approach that removes as much disease as possible.

What if I still have severe pain that does not go away even after I have had treatment?

Endometriosis can be a complex disease to treat and can have a significant impact on all areas of a patient’s life.  Pain management protocols, pelvic floor therapy, acupuncture and an anti-inflammatory diet are some complimentary therapies that can help patients manage continued symptoms. Patients with endometriosis also may experience depression and anxiety. Seeing a mental health provider or seeking out endometriosis support groups can also be beneficial to patients. Since endometriosis by definition is invasive tissue occurring outside of the uterus, a hysterectomy may not provide relief to suffering patients, unless they have adenoymosis, a separate disease in which endometrial glands and stroma can be found within the myometrial lining of the uterus. Even with the removal of the uterus and ovaries, any remaining disease can cause pain. Patients considering a hysterectomy should seek out the advice of an endometriosis specialist to investigate all options.



Adhesions: Scarring that binds together the surfaces of tissues.

Biopsy: A minor surgical procedure to remove a small piece of tissue that is then examined under a microscope in a laboratory.

Bladder: A muscular organ in which urine is stored.

Endometriosis: A condition in which tissue similar to that normally lining the uterus is found outside of the uterus, usually on the ovaries, fallopian tubes, and other pelvic structures.

Endometrium: The lining of the uterus.

Estrogen: A female hormone produced in the ovaries.

Fallopian Tubes: Tubes through which an egg travels from the ovary to the uterus.

Gonadotropin-Releasing Hormone Agonists: Medical therapy used to block the effects of certain hormones.

Hormone: A substance produced by the body to control the functions of various organs.

Hysterectomy: Removal of the uterus.

Infertility: A condition in which a couple has been unable to get pregnant after 12 months without the use of any form of birth control.

Inflammation: Pain, swelling, redness, and irritation of tissues in the body.

Laparoscopy: A surgical procedure in which an instrument called a laparoscope is inserted into the pelvic cavity through small incisions. The laparoscope is used to view the pelvic organs. Other instruments can be used with it to perform surgery.

Ovaries: Two glands, located on either side of the uterus, that contain the eggs released at ovulation and that produce hormones.

Pelvic Exam: A physical examination of a woman’s reproductive organs.

Peritoneum: The membrane that lines the abdominal cavity and surrounds the internal organs.

Progestin: A synthetic form of progesterone that is similar to the hormone produced naturally by the body.

Rectum: The last part of the digestive tract.

Ureters: A pair of tubes, each leading from one of the kidneys to the bladder.

Uterus: A muscular organ located in the female pelvis that contains and nourishes the developing fetus during pregnancy.

If you have further questions, contact your obstetrician–gynecologist.

FAQ013: Designed as an aid to patients, this document sets forth current information and opinions related to women’s health. The information does not dictate an exclusive course of treatment or procedure to be followed and should not be construed as excluding other acceptable methods of practice. Variations, taking into account the needs of the individual patient, resources, and limitations unique to the institution or type of practice, may be appropriate.

Copyright October 2012 by the American College of Obstetricians and Gynecologists.

Related FAQs 

Petition to ACOG to Improve Standards of Care for Endometriosis Patients

Below is a picture of what ACOG uses as the standard of care for the management of endometriosis: 

If you do not agree with this standard of care or if you or someone you love has suffered because of a delay of diagnosis or a lack of effectual care, please sign this petition.

ACOG needs to:

  • Immediately confer with the endometriosis community to update their standards of care and management of endometriosis. We are asking that ACOG set up a public meeting with a panel consisting of patients, advocates, non-profit leaders and medical experts, to learn how their current standards are harming patients and how to move forward with more effective standards.
  •   Work with endometriosis excision experts at AAGL to create coding for endometriosis excision techniques so that the gold standard of endometriosis care is accessible to all patients.  
  • Commit to educating practitioners on the new standards of care agreed upon. 
  • Commit to help acquiring more funding for endometriosis research separate from those done by pharmaceutical companies that  have conflicting interests. 
  • Commit to being a leader in endometriosis care and help patient advocates change standards of endometriosis care for other medical organizations such as ASRM, AAP and ACNM to name a few. 
  • Continue to work with patient advocates and endometriosis experts on the standards of care and management of endometriosis and make changes as needed. 

For further information, read The American Congress of Obstetricians and Gynecologists:Improving Healthcare for Endometriosis Patients



ACOG Proposal: Improving Healthcare for Endometriosis Patients

The American Congress of Obstetricians and Gynecologists:

Improving Healthcare for Endometriosis Patients

Casey Berna, Patient Advocate

Proposal: By combining the knowledge and experience of endometriosis advocates and medical professionals, with ACOG’s dedication to “continuously improve health care for women and lead advocacy for women’s health care issues,” new standards of care can be set to treat endometriosis patients that will empower both patients and practitioners.

Current Challenges in Endometriosis Healthcare

Endometriosis can be overwhelming for both practitioners and patients. Endometriosis patients experience an average delay of diagnosis of up to ten years, despite the fact that 1 in 10 women suffer from this disease [Weintraub AY, Soriano D, Seidman DS, Goldenberg M, Eisenberg VH (2014) Think Endometriosis: Delay in Diagnosis or Delay in Referral to Adequate Treatment? JFIV Reprod Med Genet 2:127]. In his March 2017 article, ACOG’s Tom Gellhaus, MD shared that up to 63 percent of general practitioners feel uncomfortable diagnosing and treating patients with endometriosis, and as many as half are unfamiliar with the three main symptoms of the disease.” It is also not surprising that women of color, transgender patients, and women in underserved communities often experience a greater delay in diagnosis and more obstacles to care.

Part of the delay of diagnosis can be attributed to the endometriosis myths that are prevalent among the medical community. Endometriosis does not only impact women in their 30’s and 40’s, endometriosis symptoms can be experienced at the time of first menstruation, and for some patients, even before. Early diagnosis and intervention for young endometriosis patients is crucial to improving their physical and emotional well-being, their fertility and their overall quality of life.

Another delay in care is that endometriosis is often seen as a fertility disease only impacting reproductive organs. This leads to the failure of the treating practitioner to adequately assess the patient for the many symptoms of endometriosis. Endometriosis can be present on the bowels, the bladder and ureters, the appendix, the gallbladder, the pelvic sidewalls and even in distal sites like the lungs and the sciatic nerve. Endometriosis does not only present as painful cramps, pain with ovulation or pain with intercourse. Endometriosis can also present as constipation, diarrhea, extreme fatigue, frequent urination, back and leg pain. These symptoms must be assessed and suspicion of endometriosis must be vocalized to the patient by the practitioner as soon as possible.

Another challenge for practitioners, especially those who serve patients at subsidized health clinics in underserved communities, is how to officially diagnose and treat endometriosis patients. When patients present with extreme pain, usually ultrasounds or pelvic MRI’s are ordered. Patients exhibiting bowel symptoms are sometimes referred out to gastroenterologists to have a colonoscopy. Some practitioners are unaware that endometriosis does not show up any of these tests (with the exception of ovarian endometriomas and significant bowel nodules) and assure patients that they do not see anything concerning, leading to further delay inaccurate diagnosis and critical intervention. Sometimes practitioners will find endometriomas during an ultrasound and are unaware that it is often a sign that a patient has accompanying disease throughout her pelvis.  Ideally, a practitioner will go over a patient’s symptoms and have an idea as to which areas in the pelvis endometriosis is potentially impacting. It is important for the practitioner to empower the patient by sharing these thoughts.

The next great obstacle for endometriosis patients is getting an official diagnosis and access to proper treatment. Endometriosis is tissue present throughout the pelvis in places where it shouldn’t be and does not naturally occur, resulting in fibrosis, adhesions, an altered immune response and inflammation throughout the body. The gold standard of treatment, which is currently not recognized by ACOG or insurance companies, is to excise the disease, including meticulously removing it from the bowels, bladder and any other implicated organs including the appendix or gallbladder. The tissue removed is sent to pathology for an official diagnosis where confirmation of the disease can be attained.  Completely removing the disease in a timely manner removes the source of pain and inflammation, improves fertility and leads to a greater quality of life.

To avoid multiple surgeries, which can cause greater physical and emotional trauma, the patient’s first surgery should be with a dedicated, high volume endometriosis surgeon whose goal is to be able to remove all of the disease in one surgery via excision, instead of primarily going in to look for or partially treat some of the disease. If a patient has suspected cancer they are sent to an oncologist to have all of it removed. Endometriosis patients need to be sent to a specialist to get the same level of care they need and deserve. Unfortunately, due to a lack of standards in care for treating endometriosis, many patients undergo non-excision surgeries which can result in an under treatment of the disease which can profoundly impact the quality of life and fertility of patients. Moreover, many of these patients will also be placed on costly suppressive medications, which do not treat the disease and often result in negative side effect profiles.

The greater endometriosis advocacy community struggles with the question of how to get appropriate surgical intervention to patients, especially patients in underserved communities who do not have excellent insurance or the financial resources to pay a specialist out of pocket. The first hurdle is recognizing all of the implications of disease in endometriosis patients in a timely manner and making the patient aware of the disease. Once disease is suspected, unfortunately, access to excision surgery may not be available to all patients at this time. The challenge ACOG must undertake is not only to work with advocates on changing insurance policies to recognize excision surgery and reimburse surgeons appropriately, but to also teach practitioners who do not know how to perform excision, how to care for endometriosis patients using the skills they do possess and the limited tools accessible to their patients.

Meaningful Interventions

As discussed above, going over a symptom check list with a patient and giving them a possible diagnosis can be life changing. Patients can go over the span of a decade, suffering severe pain and other invasive symptoms, all the while not having a known cause for their pain. Thinking about endometriosis and saying the word endometriosis to a patient will make all the difference.

While there are many complexities to pelvic pain and various reasons as to why a patient could be experiencing pain, endometriosis is often the most common cause of pelvic pain and needs to be a primary consideration. Suspecting endometriosis and then validating the patient's pain and experience will also be life changing for a patient. Having doctors understand the many implications of the disease is extremely encouraging for patients who in the past have often been made to feel that they are crazy or that their suffering is in their head.

Birth control can be an effective first line of treatment for patients, especially those without access to proper surgery. However, as with all medical therapies indicated for the disease, it is important for practitioners and patients to both understand that this is just palliative care, as it will just mask the symptoms of endometriosis. Again, practitioners need to stress that the gold standard of treatment is excision surgery with a specialist. Drugs such as GnRH agonists and antagonists may offer palliative care, but can have serious side effects and are not curative nor do they improve fertility. Being on more than two doses of Lupron®, for example is considered off-label usage and can have devastating long lasting effects on patients. Pregnancy also does not cure endometriosis and neither do radical hysterectomies. If the ovaries and uterus are removed and the disease remains throughout the pelvis, it will still cause pain. Endometriosis lesions contain very high levels of aromatase enzyme, which leads to production of significant quantities of estrogen, which is also produced in adipose tissue, and patients take in estrogen from the food they eat or the chemicals around them. Endometriosis is experienced in women who are postmenopausal for those same reasons. [Bulun et. al.]

Endometriosis patients can also benefit from nutritional changes to their diet to reduce inflammation. Pelvic floor therapy, acupuncture, yoga and other multi-disciplinary treatments can also help support patients until they have access to excellent surgery.

Endometriosis patients are often in physical and emotional crisis and can benefit from mental health support through both individual counseling and through support groups. Patients need to be directed and encouraged to join quality support groups with other patients both online and in person. Connecting with other patients who understand can be empowering and help combat the depression and anxiety often associated with the disease. There is a hopelessness that comes with the physical and emotional symptoms of endometriosis. The pain, fatigue, infertility can cause patients to withdraw from social activities, cause tension in their relationship, causing patient isolation. Patients are also forced to miss work due to ramifications of the disease causing further isolation. Difficulty in obtaining and maintaining employment, combined with the lack of affordable and appropriate interventions for patients, causes financial hardship for many patients.

Recognizing the disease, validating patients’ pain and educating patients about the disease would transform healthcare for endometriosis patients.

Moving Forward Together

The endometriosis community is facing a public health crisis due to the abundance of misinformation circulating about the disease, even from perceived thought leaders and influential organizations, a significant lack of awareness, continued delays in diagnosis and mistreatment of patients. ACOG has the opportunity to be a trailblazer as to how endometriosis is being talked about and treated in the exam room. With the help of endometriosis educators, social workers and expert medical professionals, the many medical professionals you serve can be better equipped to help the one in ten women that suffer with endometriosis.  With ACOG’s help, patients will have better access to endometriosis resources, as well as a hope to have an early diagnosis. Together, the statistics,  63 percent of general practitioners feel uncomfortable diagnosing and treating patients with endometriosis, and as many as half are unfamiliar with the three main symptoms of the disease” can be changed.

Women in their thirties and younger can’t remember a time when their gynecologist didn’t check their breasts for lumps or give them annual pap smears to screen for cancer or other diseases. But, there are probably many women who are much older who do remember such a time. These prevention methods were put in place by doctors and advocates dedicated to making sure that patients didn’t go without being diagnosed, because they learned that early diagnosis and intervention could change the course of a patient's’ life. Research has shown that early diagnosis and intervention is also life changing for endometriosis patients.

It is unrealistic to think that ACOG can immediately educate all of their practitioners in the art of surgical excision. This impactful endometriosis surgical treatment is difficult and takes years to master, just like treating and removing cancer.  But there is a desperate need for new standards of care for all practitioners and this proposal is a call to action for ACOG to immediately start working with the endometriosis community to improve healthcare for patients. Practitioners need more tools to adequately recognize the disease, validate patient's’ pain, educate patients about the disease and treat the disease in an appropriate and timely manner.

It would be fairly easy to create tools to support and educate ACOG’s members and the patients they treat. An in office checklist can be created and supplied for practitioners to use in the exam room with patients to check over their symptoms. This checklist would easily screen whether or not the patient has the possibility of having endometriosis. This quick screening could take as long as a breast exam. There are also tools in which patients can track their period symptoms as they may relate to endometriosis to provide more information to practitioners. Brochures could be easily created for suspected endometriosis patients for them to bring home in order to do more research.  

Giving something a name is a very powerful thing. Many patients wish that they had heard the word endometriosis sooner in their tumultuous health journey. Many patients wish that they had known sooner that their bowel symptoms, fatigue, bladder symptoms, leg pain, back pain, painful cramps, painful intercourse and infertility could all be related. Can you imagine feeling so sick, for so long and not knowing why? Can you imagine having many doctors do countless tests and exams and finding nothing? Can you imagine getting a hysterectomy with the hopes of feeling better, only to still have pain? Can you imagine how that can impact a patient emotionally? Many patients cry after waking up from surgery when they hear they were diagnosed with endometriosis. They attest to finally feeling like they were not just being “crazy” all of those years. Recognizing the disease, validating patients’ pain and educating patients about the disease would transform healthcare for endometriosis patients.


In Conclusion

By working with dedicated endometriosis advocates and professionals, ACOG can make health care for endometriosis patients safer and more effective.  ACOG has always been a leader in women’s healthcare, an unapologetic champion of advocacy for women’s needs. The ACOG Code of Professional Ethics states that “obstetrician-gynecologists have an ethical obligation to serve as the patient’s advocate and exercise all reasonable means to ensure that the most appropriate care is provided to the patient.” Endometriosis patients, advocates and expert medical professionals in the field are asking ACOG to change their standards of care for patients and put in place commonsense policies that will not only alleviate the burden of care on practitioners, but most importantly, alleviate the suffering of endometriosis patients nationwide. This call to action aligns with ACOG’s core values of access for all women to high quality safe health care, high ethical standards and advocacy for women.  ACOG has established their role as the authority on women’s health information for patients, providers, organizations and governments.  As the authority on women’s health, ACOG needs to immediately start working with advocates and experts in the endometriosis field to change standards of care for the 176 million women that endometriosis impacts worldwide.


EndoWhat New England Premiere

We all know that endometriosis is physically invasive, but the reality is, endometriosis invades all aspects of our lives. Many patients experience the debilitating symptoms of endometriosis from the start of menstruation through menopause. This means that patients can spend up to 40 years of their lives dealing with a painful, chronic disease. Being in physical crisis for so many years has a profound impact on not only the relationships patients have with others, but most importantly, it can affect the way patients feel about themselves.

Patients and loved ones who are here today know that endometriosis is pervasive and can have a significant impact on the family unit, school experience, the ability to acquire and maintain employment, friendships and of course romantic relationships.

Endometriosis can be an isolating disease and patients desperately need a positive, healthy support system to thrive. When endometriosis patients do not feel supported in a relationship, tension starts to develop within that relationship. While there could be many reasons for a lack of support, I think it is important to understand on a sociological level why other diseases and illnesses rouse more compassion and support than endometriosis does at this time.

We all know there is a lack of awareness for this disease. Too many people still do not understand what we mean when we say we have endometriosis is the same way that they understand breast cancer or diabetes. The burden of proof is on the endometriosis patient to explain and sometimes even try and convince emergency room staff, employers and even family members that their symptoms are real and that their pain is real. This is exhausting and discouraging for patients.

There is a collective, intuitive social knowing of what to do when we hear a loved one has breast cancer and is undergoing chemo, or if your nephew has his tonsils out or even if you knew your elderly neighbor had the flu. We as a community know how to appropriately rally around the individual or family unit in their time of need. Part of why this doesn’t happen for endometriosis patients is the lack of awareness, but I also think it is because there is a still a social taboo around women’s periods and reproductive health issues. The breast cancer advocacy community did a phenomenal job removing social taboos so that now businesses, politicians and even football players will rally around patient health care needs. We have a lot of work to do to raise the awareness and understanding of endometriosis in society.

I know this is seems a bit bleak! 40 years of pain that no one understands! There is hope and ways to make change to strengthen support and relationships.

I love Ghandi’s quote, “Be the change you want to see in the world.” Change starts as an inner journey for patients. I work with patients to accept that they have a chronic illness that causes pain and fatigue. This is a really hard process that is an ongoing challenge. Endometriosis patients are fierce and determined. We don’t want to be sick! But, coming ot terms with endometriosis and all that comes with it helps patients to become advocates for their own needs within their different psychosocial systems, family, school work ect…

Next, patients have the exhausting task of educating those around them. Kudos to patients who brought their loved ones today and kudos to the loved ones that came! Loved ones, KEEP coming to events, check out some of the amazing resources online , including the CEC website which was mentioned already as well as the online private support groups.

And the work doesn’t end there. It is one thing to know something on an intellectual level, but we have these pesky feeling that complicate matters. I encourage patients, as well as their loved ones, to go talk to a mental health professional for support.

One reason to go seek extra support is that having a chronic illness is a loss. For some patients who struggle with infertility on top of endometriosis, there is even more to grieve. But, parents and spouses of patients also suffer loss. It is incredibly difficult to watch your teenager struggle with such a debilitating disease. For spouses, there may be the challenge of fertility as well, but there is also social isolation, caretaker fatigue, loss of intimacy and maybe even an extra financial burden on the relationship.

Another reason to seek support is that we all have defense mechanisms that we are not aware of. Some of these coping strategies may be causing undue stress on your loved one who is already carrying the burden of endometriosis. Ask yourself these questions: How do you react when you are fearful or anxious? How do you react when you feel fearful or powerless? Do you get angry or defensive? Do you try to control the situation? Are you a doer? Are you a diehard optimist? Do your coping mechanisms support the patient or cause more tension?

Also, it is important for both patients and loved ones to examine which biases and coping strategies were taught to them growing up. When you were little and got really hurt, were you told to shake it off? Were you allowed to take time to be sick? Did you have good role models for self-care? Endometriosis patients not only need to be allowed to be sick, but they need to make rest and self-care a priority. Patients need to learn to be their own advocates for self-care, but they need loved ones to support and encourage these needs within the family unit.

I want to take the time to thank all of the health care professionals who came today. Your relationships with your patients have a significant impact on their physical and emotional wellbeing. How you treat your patients and their pain can directly affect their self-image and self-esteem. That is why it is vital that you are also aware of your own defense mechanisms and your own biases.

As a patient myself and as a mental health provider for patients, I know intimately the frustrations of the disease. I can only imagine that treating endometriosis as a physical is also difficult and frustrating. There is a reason why “enigma” is in the title of today’s event. I am sure treating this disease can leave you feeling helpless and powerless. How do you react to feeling helpless? When this disease makes you feel unsure or maybe even inadequate at times, how do you react? DO you get angry or defensive? DO you have a hard time referring out or asking for another opinion when you have exhausted all the options you are aware of? Can you admit it when you have made a mistake? Do you have any biases towards or patients in chronic pain?

These are tough, yet essential questions to reflect on. The more self-aware you are, the more capable you will be at providing a strong support system for endometriosis patients.

In closing, I truly believe that healthy relationships with others starts with a healthy relationship with ourselves and an acceptance of our disease. When we love and accept ourselves we are less likely to get hurt by others who don’t understand. I tell my patients to try and “excise” all of the unhealthy relationships out of their lives and in doing so it will reduce stress and inflammation!

I want you to take a look at this beautiful woman! Can you tell that last night she was in the emergency room because of endometriosis.  Absolutely not!


Now take a look at her. Many patients feel like barbed wire is wrapped around their pelvis.

If doctors, nurses and other healthcare professionals saw this patient, would they tell her that her pain isn’t real?

If Teachers and School Administrators saw this young woman, would they admonish her for not handing in a paper on time or not being able to participate in gym class?

Spouses, take a look at this woman. Do you think her inability to be intimate with you has to do with her not being attracted to you or that she doesn’t love you?  No, it is because she is in horrific pain.

Now patients, if you were friends with this woman, this woman with the barbed wire strangling her pelvis, would you berate her for falling asleep after a long day at work and missing the party? Would you shame her for not doing the dishes or keeping her house clean?  Would you make her feel less than for gaining weight?

Absolutely not!  You would have compassion and show empathy. You would be kind. Patients, you need to be kind to yourself. Sometimes the voice inside our heads is the worst critic. So if there is anything you take away from today is to be kind to yourself, be gentle with yourself and do not tolerate anything less from those around you.

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Endodiet Resources and Anti-Inflammatroy Diet

Lately, many patients have been reaching out for info on the Endodiet. I have to start this blog with a disclaimer that I am not a nutritionist and any and all dietary changes should be discussed at length with your physician. That being said, I am happy to pass along information that has helped me as a patient and that has helped the patients I work with.

Endodiet Friendly: Grilled Shrimp with a Black Bean, Nectarine Salsa

Endodiet Friendly: Grilled Shrimp with a Black Bean, Nectarine Salsa

Why Endodiet?

When I first went to see my endometriosis excision surgeon, he asked me if I had given up soy, dairy, gluten and cut down on red meat to help with my endometriosis symptoms. It was the first time I had heard that a change in diet could have an impact on how terrible I was feeling. Although, when I reflected back on my life,  I noticed that when I ate an excess of gluten and dairy, I felt very ill.

It's been five years since I started following the endodiet and it really has brought me relief. Granted, diet is not a substitution for excellent excision surgery. I truly feel that when I had a lot of disease, no matter how strictly I followed the diet, I still felt very ill. But following the endodiet post excision has benefited me greatly. I saw a decrease in my bowel related symptoms as well as a decrease in bloating. Also, eating better helped give me more energy and reduced my endo related fatigue.

The endodiet means different things to different people. Some encourage patients to follow the FODMAP diet. Others recommend doing Whole 30. Others encourage patients to stop eating alcohol, caffeine and sugar on top of gluten, dairy and soy. After consulting their physician, I always encourage patients to start with cutting out gluten, dairy and soy and then branch out from there. Having a chronic illness is stressful and dieting can be very stressful for some people. In the end, I always tell patients to be gentle with themselves and do their best.

There are also food intolerances tests that can be done by your doctor that can actually measure the inflammatory reaction your body produces to certain foods. I did the ALCAT test and found it very helpful.

Tortilla De Patatas

Tortilla De Patatas

Tackling the Impossible

As a lover of food and an admitted stress eater, I found following the endodiet was and still IS no easy task. I had to start following it gradually, cutting out banned foods one by one. I actually did a pizza and bread goodbye tour! I would say goodbye to pizza with bell peppers and then cut it out. I then would say goodbye to Sicilian  pizza and cut it out! I then would say goodbye to Sicilian pizza with bell peppers and cut it out! I found this technique to be helpful as cutting out foods I loved felt like a loss that had to be acknowledged.

Not the same as the Pizza in Little Italy, but still tasty!

Not the same as the Pizza in Little Italy, but still tasty!

Once I started paying attention to what I ate, reading all of the ingredients listed in prepared foods, I couldn't believe how gluten, dairy and especially soy, were hidden in so many items. For example, who knew that all of the spray olive oil and canola oils have soy in it? Did you know that some frozen hamburger patties and even Twizzlers have gluten in them?  Often you will see the words "contains milk" in items that I never would have guessed had it to begin with.

Every Day Challenges

Unfortunately, things on the endodiet aren't always affordable or easily accessed. There are very few fast food restaurants that have options that are gluten, dairy and soy free. Not everyone has access to stores like Trader Joes. Whole Foods is another option for those looking to follow the endodiet but the prices at Whole Foods can be quite high. Following this diet often relies on patients to cook their own meals. Managing daily life stressors while managing a chronic disease can make it hard to find the time and energy to cook. Finally, for those who do love to cook, having plain grilled meats and vegetables doesn't always satisfy the food lover or the stress eater.  Even though I cut many foods out and do my best, I would say I follow the endodiet 95% of the time and try not to beat myself up for that 5% of the time I get off track.

Tips and Tricks

What I have found most helpful is to make lists of my favorite foods and do my best to find substitutes that are not harmful to my body. I have found endo friendly treats for when I am stressed and have those cravings that will not go away. I have discovered fast food restaurants that I can go to when I need a quick meal. Dominoes gluten free pizza with no cheese and bell peppers in no way compares to the local pizza I love in NY, but it can satisfy my craving. Chipotle is also a great option for patients. My local supermarket makes fresh to order sushi. It is delicious, quick and also healthy! When I need a quick meal, I sometimes buy an organic rotisserie chicken at my local grocery store and pair that with a salad or frozen vegetables.

I have found some great substitutions for dairy. I love Trader Joes unsweetened almond milk. I can even use that when making mashed potatoes and no one knows the difference! I now use soy free earth balance as a butter substitute. I have found that I can substitute almond meal for flour in baking or in making a rue for my chicken pot pie. Some patients really like the Daiya products as a cheese substitute. I am sad to say that I have yet to find a yummy and satisfying substitute for cheese.

Rice Pudding make with Almond Milk and Coconut Cream.

Rice Pudding make with Almond Milk and Coconut Cream.

More Resources

Below are some of my favorite resources for the endodiet. Just remember to be gentle with yourself. Say kind words to yourself as you try to change your diet and lifestyle, it is not easy. Be your own biggest supporter and source of encouragement!

What Top Endometriosis Excision Surgeons are Saying About the Endodiet

Dr. Tamer Seckin

Center For Endometriosis Care

Vital Heath Institute

Awesome Nutritionists Who Know a Lot More About Endodiet Than I Do:

Erin Luyendyk RHN

Dian Mills:

My Favorite Blogs I Send Patients to For Recipes, Ideas and Inspiration:

Fellow Endo Warrior: Jessica Murnane

Allergen Mom

My Favorite Endo Friendly Finds:

Love Simple Mills Chocolate Cake Mix, Pizza Dough Mix and Chocolate Chip Cookie Mix:

Love Ancient Harvest Pasta:

Love So Delicious Coconut Products, especially their whipped cream and yogurt:

Trader Joes Guilty Pleasures: Chocolate Coconut Milk Ice Cream, Snickerdoodles, Kettle Cooked Potato Chips