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! 

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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. 
https://www.theendometriosissummit.com/virtual-fertility-weekend.html

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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. 
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