By Casey Berna, MSW, Endometriosis and Infertility Advocate
Statistics show 1 in 4 pregnancies miscarry and 1 in 6 couples will struggle conceiving. Despite the frequency of these challenges, needed multidisciplinary care to support those who struggle remains elusive for the majority of patients. Pregnancy loss and infertility not only take a physical toll on the body, but they also impact mental health, especially if there are underlying, chronic conditions. Depression, anxiety, feelings of shame, isolation, intense grief, and a loss of control often afflict those who struggle. But for so many, the stigma of seeking support during these hard to talk about times, and the inaccessibility of mental health care and other supportive services for all persons, makes healing from these often traumatic experiences harder.
Erica M. McAfee, a birth and bereavement doula, is also the founder of Sisters in Loss, an organization dedicated to providing support, education, and awareness surrounding pregnancy loss and shattering the stigmas that can leave so many persons struggling with these issues in silence. As a bereavement doula, Erica shares, “My goal is to always hold space for them creating memories and maximizing the last moments they have with their baby before they have to say goodbye.” Erica decided to become a doula after the stillbirth of her son at 39 weeks and a 2nd trimester loss of her daughter at 18 weeks. She also almost lost her life giving birth to her one living son, which left her unable to have more children. Erica explains, “Becoming a doula for me was giving back to the community that I knew needed the support of going through perinatal loss, bereavement, grief support and healing. Being a bereavement doula serving clients is a unique position because I personally know the pain of losing children and can help walk families on how to navigate those first moments, weeks, and months after their loss.”
Brandon Johnson, a licensed social worker, is a mental health therapist, and infertility coach for men and couples experiencing infertility and pregnancy loss. For men, the stigma of infertility can lead to significant mental health challenges. In Brandon’s work he has found, “Men approach infertility in two different ways depending on who has the diagnosis. If it is the male who is diagnosed, men tend to enter depression almost immediately...Due to the depression, men will slowly begin to isolate themselves, thus ignoring their partner and begin to lose interest in their activities.” Brandon also finds that men will struggle even if it is their partner who is the one diagnosed with infertility, and still may ignore his own feelings. Brandon warns, “Once his own feelings are ignored he can become angry or depressed; in either case he is likely to isolate, and not be forward with communication.” Brandon’s work, which also includes speaking engagements and webinars, focuses on helping “to make men comfortable in their own skin.” In therapy together, he explains, they “walk through the grief of infertility (and pregnancy loss) and help them to regain their identity.”
Parijat Deshpande, a clinically-trained somatic trauma professional and author of the book, “Pregnancy Brain, A Mind-Body Approach to Stress Management During a High-Risk Pregnancy,” helps patients heal from their losses by working with them to release grief through their body and teaching them how to support their bodies after loss. Parijat explains that she also helps “them to navigate the medical system to ensure they’re getting proper medical care the next time they’re ready to pursue fertility treatment or the next time they are pregnant, to reduce their risk of medical errors and help them prepare for a healing birth, instead of a birth that retriggers some of that grief.” When part of a multidisciplinary medical team, her work can create needed spaces for patients to heal and work through their trauma to create a forward moving path of healing.
Unfortunately though, vital services such as bereavement doula care, and therapy are not always available and accessible to all persons in need. An article from Patient Engagement HIT explains, “Limited health insurance access or in-network care are keeping many patients from visiting a mental healthcare professional. And even when a patient can find an affordable provider who will accept insurance, clinician shortages, fragmented care, and societal stigma are getting in the way of adequate care access.” For African Americans, access to care is much harder with one study citing, “a diverse mental health workforce, as well as provider and patient education, are important to eliminating mental health care disparities.” Erica, whose organization is planning an upcoming digital summit, “Breaking Cultural Misconceptions on Infertility and Miscarriage,” sees first hand the impact of health disparities on the physical and mental health and well being of her patients and their babies every day. She explains, “Many patients aren’t given options based on their social economic status, type of healthcare, and how they are perceived by the way they look or carry themselves. Then in turn when they have challenges throughout their pregnancy or delivery not having options costs them their lives or their babies lives.” Black women and Black birthers are most at risk for mental and physical trauma with Erica alerting, “Many patients, rightfully so, put so much hope and trust in our providers not knowing the structural and institutional racism that exists creates a barrier to receiving quality healthcare.”
Leaders in the community have combated some of the barriers to accessing support through creating virtual and in person groups where patients can come out of isolation and be in communion with others who understand what it is like to go through infertility and pregnancy loss. Black Women and Infertility Founder, Shervonne Coney, started her organization, dedicated to supporting women of color through infertility and pregnancy loss, because she had difficulty finding spaces where her experiences were shared and amplified, stating, “I did not see women who looked like me, sharing their infertility journey openly.” She first created a private facebook support group where patients could convene and share support and resources and is now building a directory for patients that includes providers who can give culturally competent care to patients in need.
Executive Director Kate Weldon LeBlanc, whose organization, Resolve New England (RNE), provides many different support groups for individuals and couples struggling to grow their families, has found that having a community is even more vital than usual. "Since the pandemic began, RNE support groups shifted to all virtual, and the response has been great“ said LeBlanc. "We look forward to being together again in person someday, but we will keep offering online groups since they are so convenient. Covid-19 has only amplified the stress, sadness and worry related to family building challenges." Resolve New England has found many safe ways to best support their patients during the pandemic, also presenting their upcoming annual conference virtually.
Patients have often suffered in silence without the quality multidisciplinary care they require for far too long. Advocates are working to increase awareness, reduce stigma, and create support to help reduce trauma for patients, especially for communities that are particularly vulnerable due to racism and discimination. Erica shares, “My hope for the future of care is that all Black women and Black birthers are listened to, empathized with, understood, and quality care is given to all. Equality is not equity and my hope is that equitable and quality care is given to all no matter their race.”
For more discussions, education, and support regarding infertility and pregnancy loss make sure to sign up for our Virtual Fertility Weekend where you can attend workshops with these speakers and so much more!
Reflecting back on infertility, pregnancy loss, and the impact of not having access to a reproductive immunologist.
By Casey Berna, MSW
How many incomplete surgeries and rounds of “medical management” need to occur until an endometriosis patient gets a diagnosis and the expert, multidisciplinary treatment they need to improve quality of life and fertility? How many pregnancy losses does a patient have to endure for their doctor to change course? How many fertility treatments have to occur without a desired ending? How much money has to be spent? How many years have to go by without answers? How much physical, emotional, and financial devastation has to happen before a patient is given more resources to learn more about their health? Reproductive Immunologists can be a crucial part of the multidisciplinary care team that can find fertility answers sooner, lessening diagnostic delay, leading patients to the individualized treatments that can help alleviate the challenges of family building.
I, like so many other patients, endured incomplete endometriosis surgeries and experienced multiple fertility treatments, that either didn’t result in a pregnancy or soon resulted in a miscarriage, before understanding why my body was having so much trouble doing something society touts as “natural”. Trying to conceive did not feel at all natural or easy for me. At the time, I was in my early thirties and my doctor continued to explain away my challenges as simply bad luck because “everything looked great.” I kept hearing, “You are young. It will be fine.”
It took so many years of failed treatments for someone to even consider endometriosis as a part of my problem. No one ever checked me for BCL6, a marker of inflammation commonly associated with endometriosis. People with positive ReceptivaDX tests, a measure of these markers are 5 times more likely to have failed IVF cycles. Endometriosis was an incredible burden on my life and on my fertility.
Through diagnostic laparoscopy, my reproductive endocrinologist found and ablated what he referred to as a “mild” endometriosis. After surgery, we continued to try and conceive on our own and he was befuddled as to why it wasn’t working. We started with clomid and then proceeded to IUIs. I eventually got pregnant and had my daughter. We tried conceiving again as soon as it was safe. Clomid cycles led to multiple IUIs, which led to multiple IVFs. After transfering a pristine looking, “textbook embryo,” I had my third miscarriage in the span of 5 months with still no answers. While I was incredibly lucky to have insurance that covered my treatments, I was quickly reaching my limit for how many more covered treatments I could pursue as my doctor continued trying to “figure things out.”
On a hunch, the physician’s assistant in my reproductive endocrinologist’s practice took me aside privately and told me that I may have a balanced translocation, the same miscarriage causing genetic issue her college roommate had. My doctor was skeptical, but I fought to get tested and tests showed it was the reason I kept miscarrying. Heartbroken, I had to come to terms with the fact that because of my endometriosis, much of which remained in my pelvis post operatively, and my balanced translocation, all of the treatments I went through were most likely to fail and some of my miscarriages possibly avoided if I had been treated by a doctor who specializes in endometriosis and reproductive immunology.
The field of reproductive immunology fills in the gaps that many reproductive endocrinologists miss. As an endometriosis patient, I had no idea that my endometriosis can not only cause anatomical challenges to family building, but it can also cause inflammation that impacts egg quality or prevents fertilization or implantation. While I do not have an autoimmune disease, some patients do which can also impact fertilization and pregnancy viability. The immune system serves an important role in fertilization and implantation that often goes overlooked by reproductive endocrinologists. While up to 20% of pregnancies end in miscarriage, the chance of miscarrying again after experiencing two pregnancy losses increases to 40%. I didn’t realize that once I had two pregnancy losses, my rate of continuing to miscarry became significantly higher and that the immune system plays a vital role in accepting the embryo, allowing for implantation, and ensuring the continued growth of the fetus.
Knowing what I know now, I wish I could have gotten diagnosed and treated for my endometriosis as a teenager. Not only would my quality of life have been vastly improved, I could have been mindful and proactive regarding potential fertility challenges which would have given me more options. Having a reproductive immunologist as part of my team from the beginning would have saved time, money, and fertility treatment resources, most of which were spent before we even knew what health challenges I was facing. The recommendation is that a patient should seek care if they have suffered two pregnancy losses. But, by the second loss, the chance of staying pregnant dwindles. Why not give patients access to information, testing, and needed treatment at the start of their journey with pelvic pain or infertility? Why not work to identify all possible causes right away? All too often it feels like the hopes, dreams, and health of patients are deferred due to current standards of care and the lack of information for patients and providers alike.
I am excited to be a part of the upcoming Reproductive Immunology Summit because they are working to put the power back in the hands of the community by presenting the latest research and information. Reproductive immunologists thoroughly investigate the patient’s genetics, reproductive health, and immune system to understand how they are each working together, or maybe working against one another, with respect to family building.
Our time is precious. Our health is precious. Our resources are precious. The more we know about our bodies, the more empowered we are to make decisions about our health and our future. We hope you join us!
Register for Virtual Fertility Weekend with an entire day on Reproductive Immunology here.
By John F. Dulemba, MD, FACOG
Gynecologist specializing in minimally invasive robotic surgery
The Women’s Centre, Denton, Texas
When I first meet with patients who have endometriosis, they often cry. It’s usually the first time a doctor has really listened to them, validating complaints that have been brushed off for years or explaining why hormone treatments and surgeries haven’t worked in the past. After I’ve listened, I offer a clear plan to help.
I perform CO2 laser (AcuPulse DUO, Lumenis) excision with the robot, which many consider to be the gold-standard surgery for endometriosis. The procedure is not inexpensive—the robot and the laser may add to the costs of surgery—but a truly effective procedure is cheaper than having repeated treatments that do not work. The highest-priced surgery is one that’s ineffective, requiring additional surgery, more out-of-pocket expenses and lost work or school days for patients, as well as the high emotional toll of continued pain, frustration and depression. Patients all deserve to get treated for endometriosis and move on with their lives, and that is possible—and most economical—with the right surgery.
CO2 Laser Excision with the Robot
To treat endometriosis effectively, we need to perform surgery to remove the abnormal cells. How well we do that will determine whether surgery is a long-term success. If we leave cells behind, there will be greater inflammation, pain and damage to adjacent tissues, as well as greater need for further surgery in the future.
In CO2 laser excision with the robot, the robot allows the key function of 3D and 10-times magnification, which in turn permits me to see all of the endometriosis (I need to see the cells to remove them). Once visualized, the work of removing the endometriosis is accomplished using the CO2 laser energy through the FiberLase waveguide. I can remove the endometriosis very precisely, damaging adjacent tissue at a thickness of less than one cell, as opposed to the harmonic scalpel, which can easily damage thousands of cells next to the disease I’m trying to remove. As a result of laser use, there is minimal damage to the nerves, blood vessels, organs, fallopian tubes or ovaries.
The laser also cauterizes as it cuts, so there is very little bleeding, which makes it easy to always see the endometriosis and keep track of where I am. And by reducing bleeding and collateral tissue damage, we reduce pain and limit stimulation of the body’s inflammatory response, which would trigger an increase in formation of scar tissue and adhesions that could cause additional pain and repeat surgeries. All of these advantages make CO2 laser excision with the robot well worth the additional cost, as well as the most cost-effective choice long term.
Less Chance of Additional Surgery
After CO2 laser excision, a patient is less likely to need a repeat procedure compared to other surgical options, but it is possible. We can only remove the cells we can see, and hormones (natural and artificial) can stimulate more cells to become active and visible later. In addition, even with such a precise procedure, there can be some adhesions as the body heals. I want my patients to understand that if they have a problem with endo or adhesions, we can address it with a repeat procedure, but they will not be having an endless series of ineffective treatments.
This gold-standard surgical approach offers patients the best opportunity to feel good with the fewest surgeries possible, so they won’t always keep paying the exorbitant price of managing endo. I hope to see more people with endometriosis find doctors who are performing CO2 laser excision so they can experience the best long-term outcomes for their health and quality of life.
Here Dr Dulemba present on the role of adhesions in endometriosis on March 7, 2021 at Endo Summit 2021, held VIRTUAL.
Why might an individual experience unexplained infertility, IVF failure, or recurrent pregnancy loss? Why might someone with endometriosis not be able to conceive even after expert excision? What can help someone have a baby, even when they have tried everything and still don’t know what’s happening?
Reproductive Immunology studies the interactions between the immune and reproductive systems. Reproductive Immunology may help answering these key questions.
30% of infertile couples worldwide are diagnosed with unexplained or idiopathic infertility. The problem is defined as the lack of an obvious cause for a couple's infertility and their inability to get pregnant after at least 12 cycles of unprotected intercourse or after six cycles in for those above 35 years of age for whom all the standard evaluations are normal. The American Society for Reproductive Medicine has defined recurrent pregnancy loss (RPL) as “a distinct disorder defined by 2 or more failed clinical pregnancies.” For those experiencing the issue, even one loss is challenging, filled with grief, and disheartening. IVF failure can be devastating for people trying to conceive. It is frustrating and discouraging.
Pregnancy could be considered as a triad involving the embryo, the endometrium, and the immune system. The maternal immune system may play a pivotal role during pregnancy, protecting the mother and the fetus from deleterious environmental pathogens. During pregnancy, the maternal cellular immune responses need to be modulated to prevent embryo rejection.
For a viable pregnancy to occur, a mediation switch must flip- the maternal immune system needs to move toward a more tolerant, low inflammatory state. This decreases the production of inflammatory cytokines and increases the production of cytokines that are more regulatory. Cytokines are any of a number of substances, such as interferon, interleukin, and growth factors, which are secreted by certain cells of the immune system and have an effect on other cells. There are good cytokines and bad cytokines and each will affect implantation and pregnancy. If the mediation switch does not flip or if there are too many of either kind of cytokines, pregnancy will not happen, be it naturally or through IVF. Often times, this reaction is slowed due to many factors from endometriosis, to uterine inflammation and abnormalities, to sperm issues, to genetic translocations.
Some people with infertility may have a challenged immune system from underlying conditions such as an autoimmune disease, PCOS, silent endometriosis, or any form of endometriosis- excised or not. Systemic inflammation may damage oocyte quality, prevent embryo implantation and increase miscarriage and pregnancy loss. For those with unexplained low AMH it is important to explore the immunological causes of why, while doing everything that can be done to increase pregnancy success rates.
Reproductive Immunology explores these issues. Additionally, tools have been created in recent years to assess embryo quality and the embryo’s potential to develop. The receptivity of the endometrial lining to allow implantation can be evaluated. The evaluation of the immune system continues to be a work in progress.
No one should have their childbearing decisions made for them by their bodies. Anyone who wants a child or does not want a child should be able to make that decision themselves, not because of “unexplained” factors, a condition, or a disease made it for them. Reproductive Immunology is a unique field of reproductive science to help you understand why pregnancy, either naturally or through IVF, may not be happening.
Worldwide Leaders in the field- those who have paced the reproductive world will head The Endometriosis Summit’s Reproductive Immunology Day during Virtual Fertility Weekend. Do not miss this opportunity to learn why you may be able to encourage pregnancy, improve IVF implantation rates, and avoid pregnancy loss.
Tickets are on sale https://www.theendometriosissummit.com/virtual-fertility-weekend.html
Scheduled to Appear- Dr. Ole Bjarne Christensen, Dr. Henriette Svarre Nielsen, Dr Fabio Scarpelini, Dr. Bruce Lessey, Dr. John Zhang, Dr. Melvin Thornton, Dr. Robert Klitz, Dr. Joanne Kwak-Kim, Dr. Jonathan Scher, Dr. Antonio Gargiulo, Dr. Patrick Yeung, Dr. Mona Orady, Casey Berna, Jessica Drummond, Christopher Butler, April Christina, Perijat Deshpande, Brandon Johnson, Shervonne Coney, Dr Nadera Mansouri-Attia, Michele McGurk and your hosts Dr Andrea Vidali and Sallie Sarrel.
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: email@example.com
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.