by Casey Berna, MSW
Structural racism and implicit bias permeates many institutions throughout America, devastating the lives of African Americans. Healthcare, made of the medical institutions that reign under its umbrella, is no exception. The field of gynecology has an especially egregious history of horrific crimes of racial nature. The proclaimed “father of gynecology,” Dr. J. Marion Sims, performed torturous experiments on enslaved Black women without their consent, or anesthesia. The failure for doctors to acknowledge the humanity of African American women, and its appalling impact on patients, can still be seen today.
Recently, the Endometriosis Summit hosted two important discussions surrounding the challenges that African American endometriosis and infertility patients are confronted with due to racism and racial prejudices throughout healthcare. Advocates, Jenneh, Les, Alysia, Lauren, April, Kat, Claudia, and Dr. Thornton discuss the many harmful racist beliefs impacting care, open up about their personal experiences, while also sharing the incredible ways that they are making a difference and changing the narrative.
Myth #1: African Americans rarely get endometriosis.
While there are many myths that delay diagnosis and treatment, it seems wise to start with the most obvious one that is delaying care. Reproductive Endocrinologist, Dr. Melvin Thorton, explains that, “in textbooks physicians are taught that endometriosis is very rare in African Americans. Your average physician has that knowledge and they say, “Oh, it can’t be endometriosis because it is very rare in African American women and they miss the diagnosis and patients suffer going years and years without a diagnosis.” It took 18 years for Kat Haagenson, creator of Femme Power Health Blog, to get a diagnosis despite sharing early on with her doctors, “You know, my sister has endometriosis, maybe it could be this?” In June, endometriosis advocate Kyla Canzater called out Johns Hopkins Medicine for listing being white as a risk factor for having endometriosis. The lack of inclusion of African Americans in the endometriosis space is what led Lauren Kornegay to start her own organization, Endo Black, “When I started doing research, I was not able to find any research in reference to African American women or women of color who struggled or had endometriosis.”
Myth #2: African Americans are more likely to have painful periods and little can be done
Endometriosis advocate April Christina of @iamaprilchristina, lamented that she spent almost twenty years suffering and misdiagnosed, “because I am an African American woman, and because I am 3x more likely to have fibroids, there was nothing they could do...as if this is the known quality of life as an African American woman you have to go through...Until I saw an endometriosis expert, I didn't realize there was way much more happening in my body than I knew.” Advocate Claudia Campbell, @endofierce, also had a dramatic delay in diagnosis due to the fact that doctors told her that her pain was normal, “I was told that as a Black woman...I was going to have painful periods for my entire life. Essentially, I was told this was going to be my story until menopause.”
Myth #3: Pelvic pain must be Pelvic Inflammatory Disease if you are African American.
While there should be no shame or stigma associated with having a sexually transmitted infection, being tested for one without consent and then being misdiagnosed with pelvic inflammatory disease, leading to a delay in endometriosis diagnosis and treatment, is harmful to patients. Dr. Thornton unfortunately sees this happen frequently to African American patients who present with pelvic pain, “from a medical perspective, particularly for African American women...many women go to the emergency room or go to their private care doctors because of the pelvic pain, and the number one diagnosis they get is pelvic inflammatory disease.” Dr. Thornton warns that this misdiagnosis can follow patients for life. When patients see their fertility doctor years later, and the doctor asks them if they have ever had a pelvic infection, they say yes and then “the treatment and diagnosis goes towards a different direction, instead of the treatment of endometriosis.” Lauren laments that African American patients, “are treated off of these stereotypes that you really don’t have control over. Sometimes in the Black community it’s best to stay at home if you are not going to get the care that you need, if you are going to judge me, if you are going to look at me, and make assumptions about me.”
Myth #4: African Americans are not as sensitive to pain as white people.
This myth is perhaps the most disturbing and harmful. In 2016, the Association of American Medical Colleges reported that half of white medical trainees believe African Americans have thicker skin or less sensitive nerve endings than white people. The pain that can come with endometriosis can be quite extreme, rather traumatizing, and frightening for patients who have experienced it.
Spending a lifetime of being undertreated for pain has impacted April’s health immensely and she dreads going to the doctor for treatment for her pain as she often leaves feeling worse. She explains, “If I am coming to you and I already have a 6 out of 10, by the time I am done with you, from you not even understanding or trying to comprehend or communicate with me, I’m already at an 11 out of 10.” Kat feels that racist stereotypes played a part in her not receiving the pain treatment she needed, “the strong Black woman stereotype...was pushed on me...a lot..(the idea that)I should be able to manage this pain and suppress my symptoms without...any interventions. Never did I ever receive any prescription medication to help with pain. Nothing. It was only, “You just manage it! You're going to do fine! You got this! You are strong!””
Claudia has often been dismissed and labeled as she sought to get answers and treatment for her pain. She explains, “when I would be complaining about pain and...try to push back or get assertive in my care, I would get labeled as “the angry Black woman”...when I was upset that I wasn’t being heard I would hear maybe what I needed to do is go and see a psychiatrist because...it is all in my head.”
Myth #5: African Americans who are in pain are really just drug seekers.
Jenneh Bockari, is a nurse, endometriosis advocate, and founder of The Endometriosis Coalition. While working on a post-surgical trauma unit, she witnessed first hand how racism played into the treatment of pain, “I noticed that the label drug seeker was almost always placed on the African American patients and not on the Caucasian patients...to the point where I saw people withhold medications with the attitude, “I’m not going to feed their drug habit. I am not going to watch someone become an addict.”” Claudia experienced this label herself when seeking urgent treatment for pain, “I have been in the emergency room before where I have been labeled as a drug seeker.” Lauren reminds patients that, “We cannot continue to allow people that we are paying to not pay attention to our pain. A lot of women have been turned away...because they say they are going to abuse the drugs, even if you don’t have a...history of drug abuse! It is not their job to judge us, it is their job to assist us. It shouldn’t matter what I look like, what I am wearing, you should be coming there to assist me.”
Myth #6: African Americans are very fertile, yet, their fertility is not a priority.
When advocate Alysia complained of pelvic pain at just 19 years old, the options presented to her were to “go on birth control or get a hysterectomy.” Alysia also points out research shows the disparities in health when comparing the outcomes of Black women and white women. Black women are twice as likely to have a hysterectomy for benign conditions than white women. They are also more likely to have a hysterectomy at an earlier age, and have surgery via open laparotomy as opposed to laparoscopically. Les Henderson, founder of Endo Queer, a support, education, and advocacy group for LGTBQIA+ individuals with endometriosis, was told by her doctor, “Unless, you are going to switch teams, you really don’t need to come here,” and in response to her pain she was told, “You are not going to use your parts anyway, just get yourself gutted out. Just get a hysterectomy.” Dr Thornton explains, “A lot of African American women don’t seek treatment just because they have been frustrated and they were turned away from doctors and say I am not going to see another doctor because they are going to treat me the same way.”
Kat struggled for years without a diagnosis, “When I recently got my endometriosis diagnosis and I lost an ovary, it was a lot of grief and frustration. I felt like if I had been listened to when I was younger, all of this could have been prevented. I could have kept my ovary. I could have had better chances with fertility and facing the things that I am facing now at 35...Furthermore, no one told me about seeking a fertility specialist. It was all, you should be fine! Maybe it was your husband? No one ever wanted to do any extra testing on me or refer me out to a fertility specialist.” Kat felt ignored and dismissed, “I felt like no one took my questions about my infertility and about my desire to start my family seriously.”
Dr. Thornton confirmed that it is very common for African American women not to get a referral to a fertility specialist. Claudia kept hearing that she shouldn’t have a problem getting pregnant. She felt, “the general myth or misconception that Black women are very fertile alone, did create a barrier from an access perspective...it took me quite some time before I went to a fertility specialist because my doctor wouldn’t refer me...because Black women are fertile.” And when Claudia and her husband eventually connected with a specialist, the lack of African Americans in the information sessions, in the waiting rooms of the office, in the marketing materials, and in the pictures hanging up on the walls in the office made her feel more isolated. She expresses, “All of that contributes to the shame as well because somewhere along the line you feel like as a Black woman, I should be able to do this. Everybody else must be doing this...I want Black women, Black couples, to be able to get into the fertility specialist earlier...We shouldn't be waiting 18 months, 24 months and really having to advocate for our own selves and hunting down a RE on our own.”
Myth #7: All care is created equal.
Health disparities due to systemic racism and implicit bias impact many African American endometriosis and infertility patients. While wealth does not erase the impact racism has on care, where you live, what type of insurance you have, and how much you have in savings to afford endometriosis and infertility specialists do have a big impact on quality of care. Les talks about how there is a “big difference in care between not having insurance, to being on medicaid, to having private insurance.” Lauren stresses that, “when you live in a certain neighborhood, you are already classified to a certain hospital. If you do not have transportation, if you are not able to access resources, you are not able to get transported to one of the best hospitals in that town.” Some small, rural towns may not always even have an ob gyn on staff at their hospital, never mind a provider who is educated and equipped to treat complex endometriosis. Jenneh feels that, “it took me way too long, as someone who has a lot of medical knowledge and background to figure out what was going on with me I couldn't imagine what it was like for people who do not have my wealth of knowledge.”
Infertility treatments can also be cost prohibitive, with only some states mandating coverage for patients. Dr. Thornton believes that, “Infertility is a disease. We have to come to that and treat it as any other disease. Patients should have full coverage.” When it came to infertility costs, Kat feels, “There was just a barrier to entry when it came to cost...So I kind of disqualified myself because I was afraid to even go there.”
Myth #8: There is no racism in healthcare.
Dr. Thornton admits, “these stories make me very sad, because they are the same stories I heard 30 years ago and they haven’t changed. We can try and educate physicians as much as we can, but patients need to be active. The system is set up for women not to be heard.” Indeed, such a long history of abuse from medical institutions and their providers creates an understandable mistrust from patients, which hinders diagnosis and treatment of serious, life-altering disease. Lauren points out, “Going back to experimentation, those are things that unfortunately did happen to African American people...we have a clear distrust across the board of the medical community. It is very difficult for us to break that when we are going to the hospital and we are not getting the treatment or we are not getting the attention or even getting listened to.”
Claudia wants healthcare providers to know that, “Endometriosis in Black women is real. There is a phrase, we are strong Black women, and that is very true, but strong women feel pain. We need to be heard and be understood...We want you to understand us, we want you to listen to us and we want you to treat us. That is all we ever wanted.” Les feels that, “If a doctor took me seriously early on, maybe I wouldn’t be dealing with the things I am dealing now.”
What to do to change the narrative:
Jenneh urges other advocates and non-profits in the community to remember that, “there is a large population of people just like us. Put faces to these people. Keep us in mind when you are coming up with initiatives and coming up with plans...I don’t think the endo space is reflected to be as diverse as it actually is.” Claudia implores providers that, “If your patients are having painful periods, if your patient is undergoing symptoms of something, you're treating a symptom of something. It is very likely your patient may have trouble conceiving, in that case, it shouldn’t be when your patient is 30-35 that you are having these conversations.” Les, who has created an important space for not only African American patients, but for those that are in the LGTBQIA+ community, another group that is often marginalized, encourages patients to, “Keep telling your story. If you are silent no one will know. Closed mouths don’t get fed.” She also encourages medical providers, institutions and those who hold power over policies that need to be transformed to, “Really listen to this and take it back to medical practices, or wherever you are. Really mean it and take this back. Really listen to what each and everyone is saying and take this back into your offices, take it back to your practices and put it into your research.”
To listen to the entirety of these conversations, hosted by The Endometriosis Summit please check out the below links:
Endometriosis and Race
Endometriosis, Race, and Fertility
To learn more about Anti-Racist and Trauma Informed Patient Care please join the Pelvic Guru’s team (@pelvicguru1 on Instagram) for this incredible webinar https://www.youtube.com/watch?v=0A7NjsgaZVg&t=12s
Follow and support these African American advocates and their organizations:
Lauren Kornegay @ Endo Black
Les Henderson @ Endo Queer
Jenneh Riche Bockari at The Endometriosis Coalition
Claudia Campbell @Endofierce
Kat Haagenson at FemmePower Health Blog
Though not featured in this article, also make sure to check out the Sister Girl Foundation and
The Millen Magese Foundation.
The Kegel Room podcast with Lotus Pelvic Physical Therapy
Also, please mark October 25th on your calendars for the Reproductive Immunology Summit where we will be exploring Stigma and Infertility and Pregnancy Loss.
Save the Date for EndoSummit 2021: One Voice which will be held worldwide virtually March 6-7 2021.
To volunteer with the endometriosis summit please email: firstname.lastname@example.org
It’s hard to know what to say right now.
We’re always listening.
We’re always learning.
We can always do better.
As leaders among our worldwide - yet so closely knit - endometriosis community, we recognize the importance now more than ever of upholding our shared commitment towards fostering a welcoming, supportive and inclusive space for all. We are so fortunate to have the privilege of providing care to a beautifully diverse patient population between us, one comprised of individuals from every race, religion and background from around the globe. We have come together to stand steadfast in solidarity with our patients against hatred, violence, injustice and racism.
Unfortunately, the history of racial and socioeconomic bias associated with endometriosis is a long and deeply troubling one, particularly among the Black community. Although we have evolved to a slightly better understanding of the disease over the past century, the early implications of endometriosis as a condition of only ‘affluent white women who have delayed childbearing’ have led to an enduring view that the disease rarely affects individuals of color and specifically people of African descent. In fact, among African-Americans in the United States, endometriosis is one of the most common indications for major gynecological surgery and hysterectomy, and is associated with long hospitalization and high hospital charges (Kyama et al., 2007). Race and ethnicity are also associated with hysterectomy rate, route and complications, with Black women more likely to undergo the procedure than white women overall (Jacoby et al., 2010;202(6):514-521).
Such bias stems largely from the early works of Dr Joseph Meigs, a prominent Boston gynecologist who linked the disease to delayed pregnancy among white, middle-class women in the late 1930s - based on conclusions drawn solely from his almost exclusively white patient population. These assertions were echoed in perpetuity by his later colleagues, confounding disease research and treatment for decades. As Bougie et al. wrote, "...it followed that endometriosis would be rare among nonwhite women. Implicit in this formulation was the racist assumption that women of color were less civilized than their white counterparts and therefore less susceptible to the stress of modern life" (Bougie et al. 2019). It was not until much later when accomplished physician Donald L. Chatman, MD challenged such prevailing assertions, correctly calling out diagnostic bias in which Black patients were subjected to their symptoms being overwhelmingly misdiagnosed, dismissed and incorrectly attributed to pelvic inflammatory disease (PID) and other conditions. Admonishing his peers to “strive to eliminate any residual prejudicial diagnostic posture with reference to pelvic inflammatory disease,” he called for “routine rectovaginal examinations and diagnostic use of Laparoscopy” to hasten more timely and accurate diagnoses (Chatman, 1976).
Recent works examining the beliefs associated with racial bias in pain management have also revealed that some people in both the lay and medical communities maintain false beliefs that continue to shape the way in which pain in Black people is perceived and treated. As a result, Black Americans are systematically undertreated for their pain overall (Hoffman et al., 2016). In gynecology, such disparity stems in part from the works of Dr. James Marion Sims, known as the “Father of Modern Gynecology.” Dr Sims, whose practice was deeply rooted in the slave trade, conducted gynecologic research and performed surgery on enslaved Black women without anesthesia – an abhorrent decision based on his incorrect belief that Black women didn’t experience pain the way white women did (Axelsen, 1985).
These are just a couple of historical injustices.
Endometriosis affects millions of individuals, including outside the stereotyped white, female-identified space. Though far from the only condition with a legacy of inequity - maternal mortality, infant mortality, heart disease, diabetes, cancer and many other diseases factor large as well - data shows that Black people are less likely to be believed, diagnosed and effectively treated in a timely manner. We can and must do better. While it is true that significant health disparities occur among many groups, research indicates such disparities are more likely to occur among those who are members of racial and ethnic minority groups (Department of Health & Human Services, 2011). Discriminatory practices persist at the institutional and professional levels as well, with racial, gender and cultural biases reported across the ObGyn workplace (Melville, 2018).
Racism has been declared an ongoing public health crisis, one that is perhaps amplified more so now during the current pandemic, with data demonstrating that communities of color are facing inequities in everything from a greater burden of COVID-19 cases to less access to requisite testing, treatment and care (Benjamin, 2020). The historical impact of racism continues to influence sexual and reproductive health outcomes, and these resulting health disparities must be addressed through timely research programs and treatment efforts to reduce further inequity - particularly in endometriosis. For a disease already so poorly diagnosed and managed for millions from every background, flawed and prejudicial misconceptions can lead to additional, painful challenges for many.
Together, we embrace a continuous culture of shared reflection, always listening and learning so that we may be able to best support the most marginalized among us, and our commitment to championing the health of all people within the endometriosis community has always been more than a #hashtag. It is an intrinsic part of who we are as healers, evident in our works every day as we continue to create a safe space through the dedicated care of all of our patients who entrust us with their treatment. Our collective activism remains ever-present, and we continue to initiate, participate in and represent the community across countless endeavors intended to create substantive changes in the failed standards of endometriosis care and access. We will not waver in our dedication.
Black Lives Matter. Always.
In Unanimity, The Center for Endometriosis Care | GYN Laparoscopic/Robotic Associates LA | BRI Reproductive Immunology & Endometriosis Surgical Center
Further Reading & Resources:
Endometriosis is a systemic, inflammatory disease clinically defined by the presence of endometrial-like tissue found in other areas of the body. While somewhat resembling native endometrium, the tissue is not identical.
American Public Health Association
Racial and Ethnic Disparities in Obstetrics & Gynecology
Donald L. Chatman: A Giant in His Profession, A Pillar in His Community
Racism, African American Women, and Their Sexual and Reproductive Health: A Review of Historical and Contemporary Evidence and Implications for Health Equity
The Trevor Project
Black Women’s Maternal Health: A Multifaceted Approach to Addressing Persistent and Dire Health Disparities
Black Women’s Health Imperative
National Center for Transgender Equality
Lauren Kornegay Is Using Her Struggle with Endometriosis to Create a Community for Other Black Women with the Condition
The Resilient Sisterhood Project
Why It's Harder For People of Colour to Get Diagnosed With Endometriosis
How Race/Ethnicity Influences Endometriosis
I’m Black. I Have Endometriosis - and Here’s Why My Race Matters
Prather C, Fuller TR, Jeffries WL 4th, et al. Racism, African American Women, and Their Sexual and Reproductive Health: A Review of Historical and Contemporary Evidence and Implications for Health Equity. Health Equity. 2018;2(1):249-259. Published 2018 Sep 24.
Prather C, Fuller TR, Marshall KJ, Jeffries WL 4th. The Impact of Racism on the Sexual and Reproductive Health of African American Women. J Womens Health (Larchmt). 2016;25(7):664-671.
Bailey ZD, Krieger N, Agénor M, Graves J, Linos N, Bassett MT. Structural racism and health inequities in the USA: evidence and interventions. Lancet. 2017;389(10077):1453-1463.
Axelsen DE. Women as victims of medical experimentation: J. Marion Sims' surgery on slave women, 1845-1850. Sage. 1985;2(2):10-13
Benjamin, G. Racism is an ongoing public health crisis that needs our attention now. Web: https://www.apha.org/news-and-media/news-releases/apha-news-releases/2020/racism-is-a-public-health-crisis
Bougie O, Healey J, Singh SS. Behind the times: revisiting endometriosis and race. Am J Obstet Gynecol. 2019;221(1):35.e1-35.e5
Chatman DL. Endometriosis and the black woman. J Reprod Med. 1976 Jun;16(6):303-6
Department of Health and Human Services. U.S. Department of Health and Human Services implementation guidance on data collection standards for race, ethnicity, sex, primary language, and disability status. Washington, DC: HHS; 2011
Hoffman KM, Trawalter S, Axt JR, Oliver MN. Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites. Proc Natl Acad Sci USA 2016;113(16):4296-4301
Jacoby VL, Fujimoto VY, Giudice LC, Kuppermann M, Washington AE. Racial and ethnic disparities in benign gynecologic conditions and associated surgeries. Am J Obstet Gynecol. 2010;202(6):514-521
Kyama CM, Mwenda JM, Machoki J, Mihalyi A, Simsa P, Chai DC, D'Hooghe TM. Endometriosis in African women.Womens Health (Lond). 2007 Sep;3(5):629-35
Melville N. Racism, Sexism, Other Forms of Discrimination Persist in Ob/Gyn. Medscape, September 25, 2018. Web: https://www.medscape.com/viewarticle/902466
By Casey Berna, MSW, Endometriosis Advocate
This week marks National Infertility Awareness week, a time devoted to bringing awareness to and educating the greater community about a struggle that impacts millions of individuals in the United States alone. Although not all patients with endometriosis will struggle to conceive, some studies suggest that up to 50% of women with infertility also struggle with endometriosis. Unfortunately, the percentage of trans and non-binary individuals struggling with both endometriosis and infertility at this time is underresearched, but we know these communities are impacted as well.
The Endometriosis Summit Co-founder, Dr. Andrea Vidali, is a reproductive immunologist and endometriosis specialist who has devoted much of his time and energy to improving both fertility and quality of life for the many that struggle with infertility, miscarriage, and endometriosis. Inspired by his dearly departed partner in practice, the world renown Dr. Jeffrey Braverman, Dr. Vidali embraces the complex needs of patients who struggle with endometriosis, infertility, and recurrent pregnancy loss- all while challenging the status quo when in the field of Reproductive Endocrinology.
People with endometriosis are at a greater risk for infertility. Egg quality and quantity, fertilization and implantation can all be impacted by endometriosis and potentially associated autoimmune conditions. Patients can also experience recurrent pregnancy loss, as well as complications during pregnancy. The reasons for these challenges can be multifactorial in nature.
Over the years, Dr. Vidali has seen many of his patients struggle to get an endometriosis diagnosis to begin with. While up to 25% of endometriosis patients can be asymptomatic, often only presenting with infertility or pregnancy loss, more obvious symptoms of endometriosis are often missed and not always investigated. There is a pervasive belief throughout the reproductive endocrinology community that many of the presenting clinical challenges of endometriosis and infertility can be avoided through IVF, so why bother with diagnostic laparoscopy at all?
With endometriosis, infertility, and recurrent pregnancy loss, one size does not fit all. Each struggling patient deserves an individualized approach, as well as a complete understanding of potential challenges faced. A simple, thorough clinical history can help a provider suspect endometriosis from the start. Physical symptoms such as painful periods, pain with ovulation, painful intercourse, gastrointestinal and bladder issues, back and leg pain can be indicators that endometriosis is present. A family history of endometriosis, infertility, or pregnancy loss can also be indicative of potential disease, as patients are 7x more likely to have endometriosis if a family member struggled with it. Upon examination and testing, patients may also present with poor egg quality, low AMH for their age, and a restriction of blood flow to the ovaries and the uterus.
While endometriosis is not an autoimmune disease, Vidali’s research has found that many patients have associated autoimmune diseases or early positive AMA indicators that could eventually develop into autoimmune diseases. In particular, associations are high with Hashimoto’s Thyroiditis, Rheumatoid Arthritis, Lupus, and Antiphospholipid Syndrome to name a few. Changes seen in endometriosis patients on the cellular and immune level, such as an increase in inflammatory factors (Tc17) and significant disruptions in the amount of Treg and Natural Killer cells can have a devastating impact on fertilization and implantation. These factors can further complicate fertility and pregnancy for patients trying to build their families and cannot always simply be addressed by IVF.
The good news is that there are interventions that have shown to be successful for those struggling with the devastating physical and emotional impact of endometriosis, infertility and recurrent pregnancy loss. Wide excision surgery performed by an endometriosis expert can remove endometriotic lesions from all impacted organs, thereby removing the source of inflammation and inflammatory factors, improving egg quality, fertilization, implantation and overall quality of life. For those who may still struggle with fertility and pregnancy loss after excision, immunotherapy treatments can help regulate autoimmune and cellular factors associated with challenges ranging from implantation and carrying through to helping patients have a successful pregnancy and even delivery with less complications.
Reproductive Endocrinologists, similar to obstetrician gynecologists, handle an array of reproductive challenges that patients face. Endometriosis and potential associated autoimmune conditions with their resulting family building challenges, can be incredibly difficult to treat even for those who spend each day, all day, primarily treating and studying this patient population. Patients confronted with these physically and emotionally grueling issues can face a lifetime of delayed diagnosis and dismissal from providers before seeking out intervention. The Endometriosis Summit strongly believes that practitioners who treat these patients have a moral and ethical obligation to strive to investigate a potential endometriosis diagnosis. Each patient must receive the informed consent required to learn about ALL multidisciplinary and multifactorial care available, not only presenting them with options and treatments limited to the practitioners general knowledge and abilities.
During National Infertility Awareness Week, the Endometriosis Summit is committed to providing support and education to those in the community struggling with infertility and pregnancy loss. For more information and support please check out our events this week.
Wednesday April 22 2020 at 7pm EST join Resolve New England and The Endometriosis Summit for a Facebook Live on The Endometriosis Summit Facebook Page. With Dr. Antonio Garguilo from Harvard and Brigham and Women’s in Boston, MA and Dr. Andrea Vidali from the Braverman Reproductive Institute in New York and Hoboken NJ.
Friday April 24 2020 at 430pm on Instagram LIVE @endometriosis_surgeon will host a Reproductive Immunology and Male Fertility Issues
EndometriosisSummit on April 23 2020 will host an all day question and answer period on Fertility and Endometriosis in InstaStories. Post your theory based question and get your answer (please note individual cases will not be discussed)
On October 25 2020 The Endometriosis Summit launches its first Reproductive Immunology and Preventing Miscarriage ONLINE conference
by Corey Hazama, PT, DPT, OCS, CFMT, PRPC, WCS. Corey guests on this weeks blog from her office in Downtown Manhattan at Beyond Basics Physical Therapy. She will join Amy Stein as our Self Care Workshop Leaders at the Endometriosis Summit. Sleep can be crucial to combatting pelvic pain and for brain health. Corey writes:
In recent years, with the advancement of social media, Self-Care has taken on a life and meaning of its own. Self-Care is more than a face mask on a Friday night; it includes a variety of strategies that people undertake to establish and maintain their own physical and mental health. The World Health Organization defines Self-Care as “the ability of individuals, families and communities to promote health, prevent disease, maintain health, and to cope with illness and disability with or without the support of a healthcare provider, based on their knowledge and the information available.” It encompasses many different categories, which includes hygiene, nutrition, lifestyle, environmental and socio-economic factors, and self-medication.
Now that we understand the bigger meaning of Self-Care, this brings us back to the topic of Sleep. Sleep is the ultimate Self-Care act. Poor sleep has been implicated in a number of negative health consequences. But as individuals, we can empower ourselves to take the responsibility to make changes to ensure a good night’s sleep. Self-Care is also not just something that the healthy do to stay healthy, but also something that is essential for those with chronic disease to be able to self-manage their condition and symptoms.
More and more evidence supports the importance of sleep and its effect on our well-being, physical health and ability to heal, cognition, and how much pain we feel. This makes sleep the ultimate Self-Care act because it is something we do every day and there are so many ways to alter to increase the likelihood that our quality of sleep is improved so that we can reap the benefits of a good night’s sleep.
Sleep is needed to sustain life. Studies show that poor sleep actually shaves years off of our lives. There are also a number of conditions that are affected by insomnia. A study of 1,869 cases of migraines showed that sleep protects against migraine attacks and that 29% of migraines were directly related to insomnia. Another study in 2016 found a relationship between insomnia and absences from work due to illness, demonstrating a connection between decreased sleep and decreased immune function. Numerous studies have shown that sleep disturbances are related to an increased prevalence of obesity, insulin resistance, type 2 diabetes, cardiovascular disease, and also to metabolic syndrome. Metabolic syndrome is a subtle systemic inflammation which can occur when there is increased stress, anxiety, depression, insomnia, as well as obesity and inactivity, resulting in a potential driver of chronic pain. Insomnia preceded 40% of psychiatric mood disorders and sets in at the same time as another 20% of mood disorders. Lack of sleep can affect athletic performance, whereas better sleep improves it. In addition, there is a negative impact on healing and recovery..
A 2019 study found that sleep deprivation boosts responses to pain in the areas of the brain that sense pain, and it suppresses activity in areas that modulate pain experiences. This means the brain perceives more pain coming from our nerves, and has less ability to dampen the response. A study in 2016 on 133 patients with knee arthritis compared those who slept well versus those who did not, and it found a high degree of certainty that decreased sleep, or fragmented sleep, strongly affected the pain and central nervous system relationship, what we know as central sensitization, or when the inputs into the central nervous system are amplified.
There are two types of sleep: REM (Rapid eye movement) and non-REM sleep. During the night, we cycle between these two types of sleep, completing on average four to six cycles. The type of sleep one gets is more important than the amount of sleep. You could sleep for eight hours, but if you are not entering REM sleep, the benefits will not be the same. There are a number of factors that determine our daily rhythm of being awake and sleeping, as well as other body functions, otherwise known as our circadian rhythm. Light stimulates this rhythm as well as hormones. It is generally recommended that we get about 6-10 hours of sleep, but it varies between individuals. Most adults need about 7-8 hours to feel fully rested.
The major factors that disrupt sleep are acute Stress (major life changes), physical illness (that causes pain) and psychological problems (depression/anxiety), but a number of specific habits or activities also can affect sleep.
-Going to bed and waking up at different times every day
-Taking naps during the daytime or in the evening
-Drinking caffeinated beverages after 3 PM
-Smoking nicotine, which is a stimulant
-Sleeping in a noisy bedroom
-Sleeping in a room that gets a lot of light (good luck New Yorkers!)
-Drinking alcohol in the evening may relax you at first, but alcohol does lead to disturbed sleep
-Having heated arguments with significant others or roommates before bed
-Using the bedroom for working or watching TV
-Sharing the bed with a snorer or restless partner.
The question to ask yourself is, which of these activities do you feel you have control over and you can change? There may not be much you can do, for example, if you have a snoring, kicking bed mate, besides urging them to seek medical help, getting ear plugs, or trying one of those mattresses that claim to minimize movement (anyone remember the wine glass and the bowling ball commercial?)
What helps sleep?
-Getting exercise every day
-Taking a warm bath 45 minutes before bedtime
-Drinking a caffeine-free herbal tea 30 minutes before bedtime
-Learning relaxation/tension release exercises like deep breathing or progressive muscle relaxation
-Unplug an hour before bed (including your phone!)
-Get up if you can’t fall asleep within 20 mins and return to bed when you are sleepy
-Set the alarm for the same time every morning
-Dim the lights before bed
-Try lavender aromas and self-massage for relaxation
-Unwind by doing something relaxing like reading a good book (no thrillers, people!)
-Write a journal to get all the things in your head that are running around and causing you more stress on paper and out of your brain
We can all also benefit from locating the stressors we can eliminate. If we are still having problems we can’t overcome on our own, it could be time to talk to a mental health professional.
In addition, if there is musculoskeletal pain that is prohibiting you from getting enough sleep or finding a comfortable position to sleep is a problem, a physical therapist is a good place to start. A physical therapist can work with you to decrease musculoskeletal pain and help with strategies to find improved posture and better alignment to decrease strain to your body, which will help to promote better sleep by allowing your body to relax and decreasing pain.
-What is Self-Care? -ISF isfglobal.org/what-is-SelflCare/ -Sleep Self Care University Health Services Tang Center S:/handouts/Clinical/Insomnia.doc 6/23/16 12:16PM
-Paul Ingraham, Pains Therapy Theory New Books Contact; Insomnia Until It Hurts: The role of sleep deprivation in chronic pain, especially muscle pain. http://www.painscience.com/articles/insomnia-unil-it-hurts.php
-10 Self Care Habits to Relieve Stress Before Bed-Awake & Mindful. Awake & Mindful (httyps://awakeandmindful.com/)
-Jo Nijs, et al. Sleep Disturbances in Chronic Pain: Neurobiology, Assessment, and Treatment in Physical Therapist Practice. Physical Therapy, Volume 98, Issue 5, May 2018: 325-335.
-Barbara Rigel, et al. Poor Sleep and Impaired Self-Care: Towards a Comprehensive Model Linking Sleep, Cognition, and Heart Failure Outcomes. Eur J Cardiovasc Nurs. 2009 Dec; 8(5): 337-344.
-Patrick H. Finan, et al. The association of sleep and pain: An update and a path forward. J Pain. 2013 Dec; 14(12): 1539-1552.
Joining the Endometriosis Summit all the way from Oregon, Dr. Amanda Olson, PT DPT, PRPC is a specialist in all things pelvic floor and exercise. A long time faculty member for the APTA, she will share her expertise on running and endometriosis. Amanda also created, designs for and own Intimate Rose, a pelvic health products company for dilators, kegel exercise weights, pelvic wands, and pelvic health supplements. She writes:
As many people with endometriosis (endo) know all too well, exercise and physical activity are important in managing symptoms of pain, inflammation, as well as maintenance of bone, musculoskeletal, and cardiovascular health. On the other side of this coin is the fact that it can be difficult to get up and move in the fits of an endometriosis pain episode. “Motion is lotion” as they say, and gentle yoga, Pilates, and cardiovascular exercise can help reduce inflammation and decrease pain. Endorphins are released with exercise and these “happy” chemicals can also help with coping strategies for endometriosis symptoms. The amount and intensity of physical activity needed for optimal health varies for each person living with endo, however these tips can help provide an overall guide. Working with a physical therapist who specializes in pelvic health and who has education in endometriosis is also helpful in curating a program to fit your unique needs.
When considering an exercise routine, it is important to remember that endo adhesions can cause disruption in the orientation of the pelvic organs, and in the abdominal muscles themselves. Additionally, laparoscopic surgery and other abdominal and pelvic surgeries can result in scar tissue in the abdomen. Endo adhesions and scar tissue can result in the disruption of the normal length, tension, and tone of the abdominal muscles. Retraining the muscles and the pelvic floor how to properly contract in co-ordination is key to restoring stability to the body.
Providing stability to the body during exercise and functional movements of daily living is a matter of mechanics. If the trunk is thought of as a house of our organs, the diaphragm forms the ceiling, the pelvic floor forms the floor, and the abdominals and deep back muscles form the walls. When the abdominals are affected by endometriosis, the walls of our “organ house” become weaker, which provides less stability for the ceiling and floor. This alters our intra-abdominal pressure (IAP), and can affect the piston-like mechanics of the diaphragm and pelvic floor, which work together to create efficient breathing.
Furthermore, it is important to note that the abdominal muscles work in symphony with the pelvic floor muscles, diaphragm, and small muscles in the spine called the multifidi to stabilize the trunk, promote effective breathing, and maintain IAP. The diaphragm and pelvic floor work in a piston-like manner wherein as the diaphragm drops drawing breath into the lungs, the pelvic floor also drops. To expel air it is vital that the diaphragm returns to its resting point and the pelvic floor lifts back up. This requires that the muscles maintaining the walls of the trunk are strong and hold form. Thus, the abdominal and other core muscles are important in maintaining proper intra-abdominal pressure (IAP) for breathing, posture, and bracing the spine during functional movements as well as when you cough, sneeze, have a bowel movement.
Retraining the core muscles to contract in coordination with your breathing for optimal exercise requires some practice. One exercise to get you started is the pelvic brace exercise:
Pelvic Brace exercise: lie down on your back with knees bent and feet shoulder width apart. Inhale gently. Then exhale and contract the muscles of the core by imagining that you are shutting off the flow of urine while drawing your abdominals slightly inward. Your gluteal muscles should not be contracting, and your pelvis should remain perfectly still, not rocking or tilting. Initially, try to hold the contraction for 3-5 seconds. Rest for 5 seconds. Repeat 10 times, and do 2-3 sets.
Conversely, it is important to master the co-ordination of relaxing and expanding the pelvic floor, also referred to as a pelvic floor “drop”. To perform a pelvic floor drop:
Pelvic drop exercise: lie down on your back with knees bent and feet shoulder width apart. Inhale and feel the pelvic floor expand gently away from your sits bones. It might help to envision that the muscles around the urethra, vaginal opening, and rectum are a bubble gently expanding down and outward. Try to maintain the drop for a count of 3 (without holding your breath), then relax and allow the muscles to return to a resting position. Repeat this 10 times and perform 2-3 sets.
These basic exercises are cornerstone exercises which allow for flexibility, co-ordination, and control of core. These can implement throughout the day and added to a pre-existing exercise regime. A pelvic physical therapist can provide additional exercises, manual therapy, and modifications to help you find a routine that honors where you are in your stage of endo, to help you reach your goals.
By Antonio R. Gargiulo, MD
Dr. Gargiulo is a reproductive endocrinologist and reproductive surgeon at the Center for Infertility and Reproductive Surgery and the Boston Center for Endometriosis at Brigham and Women’s Hospital. He is the Medical Director of Robotic Surgery for Brigham Health and an Associate Professor of Obstetrics, Gynecology and Reproductive Biology at Harvard Medical School. He will be moderating a panel discussion called “Attacking Adenomyosis” at the 2020 Endometriosis Summit. He writes:
Of all the patients I see for fertility treatment or gynecological surgery, patients with endometriosis are the most likely to come in with a very clear idea of what surgery they want. They have read the blogs, done their research, and often heard the opinions of several other doctors. They grill me about my specific surgical experience. Many have already had surgery in the past and face the prospect of an endo re-op. They want this surgery to be the last. Most of them are now demanding excision surgery – and I couldn’t be happier.
Since 2006, I have performed minimally invasive excision of endometriosis with the assistance of a surgical robot, using a miniaturized flexible CO2 laser as my only cutting device (Lumenis UltraPulse Duo CO2). The robotic surgical platform and the flexible CO2 laser each offer distinct advantages for preserving fertility during excision. The robot allows me to operate with 3DHD vision through small incisions with exceptional dexterity and the flexibility to articulate my instrument tips in every direction, which I cannot do with the instruments of standard laparoscopy. This means I can see, reach and excise endometriosis cells located throughout the abdomen. Because the robotic approach is easier to learn, compared to traditional laparoscopy, I’m hopeful that the technology will encourage more surgeons to offer true excision surgery for endometriosis as their primary approach.
The synergy between the enabling nature of the surgical robot and the precision of the flexible laser device defines my surgical technique. By using the CO2 laser as the primary cutting tool, I can excise disease without burning adjacent tissue. Both actions (excision and lack of collateral damage) are critically important for preserving fertility. I can work around the ovaries or fallopian tubes without destroying healthy cells. In contrast, older lasers and classic thermal ablation techniques can damage tissue beyond the intended target (endometriosis cells). Another option, classic laparoscopic scissors used without thermal energy, also avoids collateral damage. However, scissors cause more bleeding than the CO2 laser, and this in turn means increased difficulty in visualizing the pathology (and the possible need for secondary coagulation).
Even after full excision by a capable surgeon using such advanced technology, there is no guarantee that a patient will not have a recurrence of pain and need additional surgery. However, excision is by far the best option available, with results above and beyond any other treatment. Medication to functionally antagonize one’s own estrogen (the hormone that “feeds” endometriosis), such as progestins, in my opinion, may help reduce pain and inflammation. It may be considered as an adjuvant to excision surgery in patients that can tolerate them. Specialized pelvic physical therapy is also considered a fundamental complementary treatment.
Nevertheless, most surgeons still offer older surgeries like ablation, which causes more pain, endangers fertility, and virtually always leads to re-op. At the other end of spectrum, pharmaceutical commercials are trying to persuade women to avoid surgery altogether and just take expensive medication that, even when not stopped due to the nasty universal side effects, only offers a short-term remedy (it must be discontinued in a matter of months).
Fortunately, any effort to steer women with endometriosis towards conventional ablation surgery, or towards a medication-alone approach, underestimates the awareness and shared experience peculiar of this patient population. People with endometriosis will keep researching and continue to demand the right surgery. It’s my hope that by doing so – in effect, holding doctors accountable to always offer the best surgical option – they will increase the ranks of surgeons trained in robotic CO2 laser excision.
Dr. Allyson Shrikhande is a board certified Physical Medicine and Rehabilitation specialist. She is Chief Medical Officer of Pelvic Rehabilitation Medicine. She is also the Chair of the Medical Education Committee for the International Pelvic Pain Society. Dr. Shrikhande is passionate about endometriosis and pelvic pain . She is dedicated to helping those who suffer and has traveled the world teaching gynecologists, urologists, physiatrists, and interventional pain specialists about pelvic pain. Endometriosis Summit Founding Faculty, Dr. Shrikhande will analyze causes of pain in our Pelvic Pain Panel at our Second Annual Town Meeting on March 1, 2020.
Vulvodynia means simply pain in the vulvar area. Frustrating for many patients, as it is more of a description of symptoms rather than an explanation of the underlying cause and pathophysiology. There are numerous underlying
Contributing factors to vulvodynia including hormonal influences, recurrent infections and neuromuscular influences. The connection between vulvodynia and Endometriosis is through neurogenic inflammation around the pudendal nerve. The pudendal nerve innervates the lower two thirds of the vulva. Therefore, if the pudendal nerve is irritated and inflamed vulvodynia can occur.
Endometriosis can contribute to neurogenic inflammation around the pudendal nerve in three ways; 1) Endometriosis can cause a chronic guarding of the pelvic floor musculature and ultimately a neural ischemia around the pudendal nerve 2) Endometriosis in and of itself is a pro-inflammatory disease contributing to the pro-inflammatory cytokines release around the pudenda nerves 3) direct innervation of the endometriosis plaques along pudendal nerve (less common). Persistent neurogenic inflammation along the pudendal nerve which innervates the lower two thirds of the vulva can ultimately lead to vulvodynia symptoms. Perhaps as a community we should think of Endometriosis more often in the refractory vulvodynia patients?
Tickets for the Endometriosis Summit are on sale
Isn’t it maddening when people tell you to breathe and relax more to help ease the pain associated with endometriosis and pelvic floor dysfunction? If it were only that easy.
I’m Dustienne - a pelvic health physical therapist and yoga teacher. I have also had experience with debilitating dysmenorrhea - vomiting trying to get home, experiencing the pain that makes you rub your feet together...you get the picture.
Let me be honest - breathing during this time did not make my pain go away or prevent me from a vomiting extravaganza.
It did help to have a strategy. It was useful for me to have a place in my mind to go to when I would get so frustrated because I needed to stay home and miss out on work, travel, or family time. Training my mind with a meditation practice offered me some solace during this time...and so did the Gilmore Girls ;).
In my experience, my body would tighten secondarily to the primary issue of pain, cramping, diarrhea and vomiting. After the flare would end, I was left with multiple areas of my body gripping and hanging on for dear life. My pelvic floor would be super tight, which you know can set you up for constipation. My back would be stuck in flexion so that I would not be able to stand up straight.
Working with the breath, gentle yoga postures, mindfulness, and supporting the nervous system are strategies that helped me and hopefully will help you.
Supporting your nervous system
Think of putting coins into a piggy bank. Each little bit you put in adds up. Some days you might need to take a bigger withdrawal than other days.
MeditationMeditation is not for everyone, but those who enjoy it find it super helpful. I’ve had the pleasure of attending Tara’s workshops and she is an absolute delight. I love her basic body scan: https://www.tarabrach.com/meditation-basic-body-scan/
Supporting your nervous system by attending to your senses can be helpful and enjoyable. The experience of pain and the stress of not being able to attend to your responsibilities can trigger a fight-or-flight response. Nurturing yourself with a restorative yoga practice can be helpful, especially in the week before your symptoms escalate (if that is predictable).
When people experience pain, especially deep pain near the organs, the body hugs itself by tightening around where the pain is felt. This is called the viscero-somatic reflex. We can use visualization techniques to encourage the body to soften.
I find asking my patients to soften the pelvic floor is a little ethereal. If you ask someone to contract and relax their upper traps (just above your shoulders), it’s pretty easy to do, especially with the visual feedback of a mirror. The pelvic floor muscles are a little trickier to connect with since we aren’t usually looking at them!
Finding the bony landmarks of your pelvis to orient where the pelvic floor muscles are can be helpful. Find your sitz bones, pubic bone in the front, and tailbone in the back. This diamond shape houses the pelvic floor muscles. When you inhale, your pelvic floor muscles lengthen towards your feet. If you experience pelvic pain, your muscles will probably be on the tighter side and have a harder time lengthening on your inhalation. By utilizing the visual cues, you use your mind body connection to encourage the lengthening.
A little research
For the scientifically-minded folks, there was a study done in Brazil that revealed yoga reduced pain and improved the quality of life. It was a randomized control trial that looked at the use of hatha yoga to treat pain caused by endometriosis. The goal of the study was to evaluate chronic pelvic pain, menstrual patterns, and quality of life.
How does yoga help?
Postures to try
Here are a few of the many posture options to try. See how they feel in your body!
Reclined Goddess Pose
I love restorative yoga postures for a number of reasons, but especially because of the chance for us to rebalance the autonomic nervous system. The sympathetic nervous system (fight-or-flight) gets stimulated with persistent pain, and activating the parasympathetic nervous system can help reduce pain. You can create restorative postures with pillows, bolsters, blankets, blocks...whatever is around. I have found creating a restorative Child’s Pose or Puppy Pose was helpful when I was bedridden and wanted to shift my nervous system.
When people are flaring they will usually not want their abdomen to be on stretch. Child’s Pose is helpful for calming and grounding, lengthening the fascia in the back body, and softening the fascia in the front.
Try this posture to open up the side body and abdominal wall. It offers sidebending at the thoracolumbar junction (where the mid and low back meet) where the diaphragm inserts. Breathing into the ribs, especially on the elongated side is a nice additional benefit.
When you are not flared up, offering extension into the low back will allow your abdominal wall and fascia surrounding your organs to lengthen. Sphinx pose is a nice place to start with extension poses, unless that is too much. Click here for my favorite extension progression.
I hope this blog post offers you some ideas that help make your journey a bit more easeful. I wish you peace in your mind, your heart, and your body.
Dustienne Miller, PT, is a physical therapist practicing in Boston, MA. She own Flourish Physical Therapy and Your Pace Yoga. A supporter of The Endometriosis Summit right from our start, Dustienne will conclude Endo Summit Workshop with a guided meditation and yoga program. She will also help the Town Meeting crowd find their breath in a group activity. Ticket are now on sale for The Endometriosis Summit
The Endometriosis Summit's Mentor and Friend, Dr. Maurice K. Chung, RPh, MD, joins the blog this week. Dr. Chung is an absolute pioneer in pelvic pain, preaching to the world that there are multiple generators of pain in the pelvis when someone has endometriosis. He is the Director at Mercy Regional Center of Excellence for Endometriosis, Pelvic Pain & Urogynecology in Canton, Ohio, and Clinical Professor of Obstetrics/Gynecology at the University of Toledo School of Medicine. Dr. Chung has served as President to multiple societies including SLS and IPPS. He is the founder of the "evil twins" concept of painful bladder syndrome and endometriosis being present together. He is also an amazing friend and, along with his World Team of Pelvic Pain experts fantastic conference companions, Pelvic Pain would be no where without Dr. Chung and it is an honor he has joined our blog. He writes:
The pelvic neural network is complex and interconnected, with multiple factors that affect the expression of pelvic pain. For my patients whose pelvic pain is related to endometriosis, the central focus of treatment begins with complete laser excision, removing the initiating source. This minimally invasive surgery does not damage adjacent tissue, thus preserving the ovaries (and fertility) while mitigating pain. In addition to this essential procedure, I take a multi-step approach to addressing all contributing sources of pain throughout the pelvis.
What Causes Pelvic Pain?
A study of women’s pelvic pain showed that 30% of cases were related to the bowel, 30% involved the bladder, 20% were musculoskeletal, and 20% could be attributed to the reproductive organs.1-3 As a gynecologist, I can’t just focus on the reproductive organs, knowing that they only account for 20% of pelvic pain cases. When a patient has pelvic pain, I evaluate all the potential sources, even if another practitioner has already made a diagnosis.
Patients with endometriosis often have interstitial cystitis (IC), or bladder pain syndrome, pudendal neuralgia, and pelvic myofascial pain syndrome. Some physicians diagnose them with pelvic floor dysfunction and order physical therapy. In my approach, I identify all the sources of pain and treat them individually. First, I evaluate the urinary system and ask patients questions that could point to IC. Next, I evaluate the pelvic floor muscles and the nerves that innervate those muscle groups. To gauge potential bowel pain, we discuss symptoms such as diarrhea, constipation, dietary changes, or a previous diagnosis of gluten sensitivity, irritable bowel, or inflammatory bowel.
Treating All Sources of Pain
Once I understand the source(s) of my patient’s pain, I explain the total picture of pelvic pain as a neighborhood. The endometriosis is a burning house. If some of the neighboring houses (the bladder, muscles, nerves, or bowels) are burning as well, then they add more fuel to the fire. The neighborhood is burning hotter and out of control. We can’t put out the fire by just treating one house – we need to treat the whole neighborhood. Here’s how we do that:
Endometriosis is a complex and painful disease, but a combination of laser excision and a systematic approach to other common sources of pelvic pain has been very effective for my patients. Three months after excision surgery, 80-90% of my patients have at least 50% less pain, and it continues to decrease as the pelvic network quiets down. We could not achieve these results by treating endometriosis as an isolated problem – we need to address the pelvic pain as a whole.
1. Zondervan KT, et al. Patterns of diagnosis and referral in women consulting for chronic pelvic pain in UK primary care. Br J Obstet Gynaecol. 1999 Nov;106(11):1156-61.
2. Howard FM. Chronic pelvic pain. Obstet Gynecol. 2003 Mar;101(3):594-611.
3. Chung MK, Chung RP, Gordon D. Interstitial cystitis and endometriosis in patients with chronic pelvic pain: The "Evil Twins" syndrome. JSLS. 2005 Jan-Mar;9(1):25-9.
Niva Herzig PT, of Core Dynamics Physical Therapy
chose to interview one of her patients with endometriosis as #EndoSummit2020 prepares for its Sex and Relationships panel. Niva writes:
I thought this would be a perfect follow up to the first blog about relationships and Endometriosis. A real story about a real person and life with endometriosis. This is how it affects them and their relationship. How courageous for this remarkable person with endometriosis to share this story. We explored personal questions about her diagnosis, surgeries, emotions and of course relationship and sex with endometriosis. First a little about her:
“I'm 43 years old. I was born in Queens NY and raised in New Jersey. I was diagnosed at 28 years old. Before my diagnosis I was a behavior therapist for autistic children and teens. I loved every second of that job. I loved going to work every day. Unfortunately, the job was a bit too physical and I had to resign 3 months after my first Lupron shot.
I was bedridden for 6 months following my last shot of Lupron. But I eventually made it back to being a per diem case worker in the autism field again.
Unfortunately, around 2013, I was deemed permanently disabled because of numerous other conditions.
It's a life changing experience. Before this, I was a very active person. I went hiking weekly, traveled, and had numerous social circles.
Now I'm trying to manage my new life. I use photography as an outlet now. Music, my dog, walking, and photography are my saviors. I still love being out in nature. It brings me peace. I just wish my body would allow me to live life again and not just survive it. But I'm working on it.
When did you know something was not right?
I knew that something was not right in high school because I used to throw up from my period every month. I would get fevers. The pain in my lower back and down my legs was so bad, I would often crawl around my house.
When were you diagnosed?
I was not diagnosed until I was 28 years old. I was tested for Crohn’s Disease, had a colonoscopy, was told I was just anxious, etc.
How many surgeries have you undergone?
I have had a total of 5 surgeries. My last surgery was less than 2 years after a total hysterectomy. I was recommended to the CEC in Georgia because my case was too complicated. I had my hysterectomy with a regular gynecologist. It wasn't until I joined social media that I even found out about excision. All my previous surgeries had been just ablation. My gynecologist kept missing my pain after my hysterectomy, so I had to start advocating for myself.
When was your first surgery?
My first surgery was January 2005.
Are you in a relationship?
Yes. I'm on my second marriage.
Were you in a relationship when diagnosed?
I was less than a year into my first marriage when I was diagnosed.
How did you explain to your partner?
Honestly, I didn't really. He was pretty active in coming to doctor appointments with me. I was not aware or knowledgeable enough about how severe endometriosis was. For some reason, I didn't think it was a big deal at the time. I was just happy to finally have a diagnosis.
Did your diagnosis change your relationship?
Absolutely! My first marriage ended because I couldn't have children because of endometriosis.
We tried for years with no luck. It really put a strain on us. I wanted to adopt, he didn’t. It got more complicated than that. I remarried several years later. And unfortunately, the worst times of my Endo diagnosis happened during my second marriage. I was recommended to have a total hysterectomy by a regular gynecologist. After my hysterectomy, I was still in constant pain. I was back and forth to the ER almost every weekend for 6 months. My bladder and bowel issues were so much worse. It was during a 12-hour visit to the ER that we discovered that I had ovarian remnant syndrome. I was devastated, realizing I had a hysterectomy for no reason. I then began to realize that I needed to advocate for myself. I went to an endometriosis specialist locally. He told me that my case was too complicated and didn't feel comfortable performing the surgery. I appreciated his honesty so much. My last surgery was 8 hours in Georgia. My husband came with me. It took a toll on both of us mentally. I've had severe PTSD ever since. Sex is now extremely painful. I'm constantly terrified of ripping or harming my vaginal cuff since I had to have my first one completely removed and repaired. Living in fear is not exactly healthy for one's sex life. We manage in our own ways. But, endometriosis has definitely affected both of my marriages and not in a good way.
What changes have you made as a couple to overcome pelvic pain?
I go to pelvic floor physical therapy every other week. My husband has been extremely patient and understanding and never forces sex on me. We are intimate in other ways now. But I hope to one day be able to not be traumatized enough to get my "regular" sex life back. I've also just started psychotherapy to help deal with my PTSD better.
Do you ever feel guilty or you have let your partner down?
Absolutely. All day every day. I never not feel guilty. It all adds to the trauma. It's an endless cycle. My second husband did not want kids, so that guilt is not there, thankfully. But I feel guilty all the time for my many health problems. I feel like a burden. I feel like he deserves a healthy wife who can participate in all the things he wants to do. I have many issues because of a drug I was given for endometriosis in 2007 called Lupron. It pretty much destroyed my immune system. I lost my career and I made pretty decent money. It's hard living on one salary now. I feel it puts a ton of pressure on my husband and I constantly feel that is my fault. Endometriosis bleeds into every aspect of your life. It affects intimacy, friendships, income, ability to participate in daily activities. I constantly think my husband would have a better, stress free life if only he had a healthy wife.