The Ones To Watch: Endometriosis Support, Research
Endometriosis is a complex, and very often, a misunderstood GYN condition. Mild cases can affect one woman to the point of crippling her for days, while another woman with a more severe stage may not show any symptoms. It can affect personal relationships, work, self esteem, and fertility.
Unless endometriosis is experienced first hand, it is hard to convey just how all consuming the symptoms are. Many women’s health professionals can be mystified by the arbitrary nature of the disease.
- It runs in some families, but not in all.
- Some women experience severe pain.
- Some women experience abdominal bloating.
- Pregnancy may help temporarily relieve the symptoms for one woman, while another woman cannot get pregnant because endometriosis has ravaged her womb.
- It primarily affects the pelvis, but lesions can spread to almost any area of the body.
General practitioners and OBGYNs may dismiss the severity of the symptoms, classifying severe menstrual pain and heavy bleeding as normal, or attribute the cause of the symptoms to another condition, like irritable bowel syndrome or kidney disease.
Women are told by board certified professionals that they are neurotic. Some health care providers may see repeat visits by patients as pill seeking rather than a serious effort to find a solution to pain. Once a patient is put on the defense, it can be hard for them to find a physician to trust, or even want to try. The emotional burden of bearing this condition can bring women to the point of giving up. It has cost some women their lives because they could no longer live with the pain, or continue feeling like a burden to their families.
More than 176 million women worldwide are estimated to have been diagnosed with endometriosis, however diagnosis is starting to improve, which could push that number up much higher.
The number of medical professionals who are experienced at diagnosing and skilled at effectively removing endometriosis are limited. The need for research, awareness and better medical training is great. Hysterectomy is often performed, and women continue to suffer. Minimally invasive endometriosis excision is the most effective long term treatment of pain, but few doctors are trained to perform these procedures thoroughly. Putting women in touch with minimally invasive GYN specialists to perform endometriosis excision (also known as endometriosis resection) is imperative for finally getting relief from constant pain. Efforts to increase access and awareness are expanding.
Endometriosis Champions Provide Resources, Support For Women
Efforts to help women get the information they need about endometriosis have had a groundswell over the last decade. Organizations like Endometriosis Foundation of America, Endometriosis Research Center, Nancy’s Nook on Facebook, EndoSupport, and The Endometriosis Network Canada all share information with each other and have been drawing together to get more recognition for endometriosis within the medical industry.
These organizations provide support and the most up-to-date information available. They create materials for outreach to young women who are just beginning to experience symptoms, and guidance to women who are ready for surgery on how to choose a true GYN surgical specialist whom they can trust to perform excision or resection of endometriotic lesions. They work to debunk out-of-date endometriosis therapies and myths and create networks to share information on a broader scale.
Dr. Tamer Seckin, MD, co-founder of EFA
“I started the Endometriosis Foundation of America after spending more than 25 years treating women with the disease, and after seeing first-hand the struggles they faced trying to get a proper diagnosis that would lead to effective treatment,” said Dr. Tamer Seckin. “I knew that something had to be done to create awareness. I founded EFA with the support of my patients, and it was brought into the public eye in 2009 when Padma Lakshmi joined me as a co-founder choosing to tell her story to the world in an effort to turn her pain into something positive by creating national awareness of the disease.”
The EFA is the first research and advocacy foundation of its kind organized by a private physician, and it mission is to increase disease recognition, provide advocacy, facilitate expert surgical training, and fund landmark endometriosis research.
“As we bring more awareness to the disease we will see more diagnosis,” said Seckin. “Early diagnosis is the best prevention for endometriosis because it allows for early intervention. Currently, a staggering 176 million women worldwide have this disease. While this number is significant, there are not enough research monies to grasp the full burden of this disease, and we suspect actually that these numbers are much higher. The disease costs society an estimated $110 billion annually and is one of the top three causes of female infertility and hysterectomy.
“It is a shame that gynecologists are missing this disease regularly. They are misdiagnosing it and in some cases they are even telling women that it’s not real and that their pain is in their head. Many women with endometriosis are depressed because no one understands them. Doctors have to have more compassion, more empathy. They need to understand endometriosis so that they can treat their patients! It’s that simple!”
The importance of early diagnosis and timely intervention is one of the EFA’s core values and is consistently reflected in all of the organization’s programmatic activities.
- Specifically, The ENPOWR Project is the country’s first educational program focused on raising endometriosis awareness among the adolescent population for the purpose of early diagnosis. ENPOWR stresses the importance of self-advocacy when dealing with reproductive health, and arms both boys and girls with the tools needed to navigate a challenging healthcare environment.
- Padma Lakshmi, one of the EFA’s co-founders, speaks publicly about her experience through an array of channels including mass media, political arenas, and public events, allowing her to reach a wide audience.
- The EFA also hosts an annual medical conference that Dr. Seckin spearheads, gathering the foremost thinkers in both the clinical care and research of endometriosis. This three-day event boasts two days dedicated to education for professionals in the field, with the third day focused on patient education.
- Additionally, the EFA collaborates with partnering hospital systems to host intermittent educational events for both patients and professionals. In conjunction with The ENPOWR Project’s implementation, the EFA has educated clinicians from accessible and affordable reproductive health care clinics. This ensures adolescents receiving ENPOWR’s education can seek appropriate treatment. The EFA also distributes its educational literature across the country through a public awareness campaign.
- The ENPOWR Award recognizes both an individual and an institution who have demonstrated commitment to women’s health education. Senator Jeffrey Klein (Bronx) and The Young Women’s Leadership Network were honored last year as each exemplify these values. Given the under-representation of endometriosis in the public health and research landscape, these leaders in the field are invaluable for moving the disease forward and should be recognized as such.
Heather Guidone, ERC Board Member
“I came on the (Endometriosis) scene long before the internet was the portal it is now for the endo community,” said Heather Guidone, ERC board member. “Isolation was far more common as a result and the best we had in the early days was snail mail through the endo association. No one in my family understood, and so there was not a lot of support forthcoming.”
Since Michelle Marvel founded the Endometriosis Research Center in 1997, it has grown from a local support group to an international organization with tens of thousands of members from every corner of the globe.
It is a staunch supporter of individuals with endometriosis, leading the way in legislative awareness, media outreach, advocacy, and authoritative education. The ERC is a volunteer run organization, funded solely on donations which are used only for developing research projects and materials. They do not charge their members for access to information or programs. Many of their publications are used by other endometriosis groups for informational outreach.
The ERC created a collaborative effort called ADOPT-A-DOC/EndoMed.
“Adopt-a-Doc has helped increase awareness and networking on the disease at the professional collaborative level across hundreds of physicians,” said Guidone. “They have come to know us as a valuable resource, and were able to in turn, point their patients towards our robust education, support, and encouragement programs.”
“I was diagnosed in 1969 after 17 years of pain and ruptured cysts,” said Nancy Petersen, Nancy’s Nook, RN retired. “I had endo for a total of 36 years, 22 of which were after my total “curative hysterectomy”. Working with patients taught me I likely still had endo.”
Like many women who had no support in the 60s and 70s, her journey was harrowing. A hysterectomy was performed, but the pain remained for more than 20 years after. In 1984, her encounter with Dr. David Redwine and his research on endometriosis excision led her actively broaden the scope of what women understood about the condition. Her experience with all of these women who were suffering led her to believe that even after her hysterectomy, her endometriosis was still active. After undergoing excision surgery, and finally being free of leg and back pain, Dr. Redwine went on to publish a series of 75 cases of active endometriosis post hysterectomy.
Nancy volunteered at the Endometriosis Research Center for their website. She wrote articles on Dr. Redwine’s research, and it was there that Heather Guidone recommended she start Nancy’s Nook on Facebook.
Nancy’s Nook is social network on Facebook that provides community support and information on excision surgeons.
“At first there were several hundred members. Now we are approaching 9,000. The group is made up of women who have had failed most medical and many surgical therapies. When I can get them into skilled surgeons hands, we find they still have active endo. For most women, their symptoms are relieved with expert excision. Our group has members from all around the world, and we are constantly identifying expert excision surgeons in other countries, and posting that information.”
Nancy’s Nook is a community that has seen success for so many women. ” I think what gives me pleasure is relief of pain and restoration of quality of life. But, also, there are those women who have been able to conceive when they never thought possible after excision of their disease. I consider those my babies.
Join Nancy’s Nook on Facebook.
Danielle McDowell, co-founder, Endo Support
“I’ve probably had endometriosis my entire life, with very painful periods,” said Danielle. “In 2008, the pain changed to constant chronic pelvic pain. I was diagnosed in 2008 when I was 30 years old.”
“Nobody wants to hear about period problems, and many don’t want to hear about women’s health. Everybody has an opinion, and it gets more and more difficult to hear them. We’ve heard them all. ‘She just needs to take Vitamin E’ to ‘Why doesn’t she JUST get a hysterectomy.’ There is no easy route for endometriosis treatment. You MUST become your own advocate if you are truly going to understand this disease and treatment options.
Endo Support began in 1996 by women who were struggling with endometriosis. Endo Support created a supportive network, where women could talk about treatment options, doctors with whom they’ve found success, and anything endometriosis related.
The website was launched by one of their members back in 2006. There have been a few group leaders. In 2008 there were 2 women leading the group, both with Endo. One of the woman was living well, busy with her only son. The other soon got sicker and bedridden, and Danielle offered to take over in 2011.
“Our primary focus is helping local women find help in Minnesota with our in-person support meetings,” said Danielle. “We focus on successful treatments and always discuss how not all treatment options are right for everyone. Many of us are busy with our careers and families. We focus more on treatment to get you back on track living your normal life.”
Endo Support has a network of local doctors who attend the in-person support meetings and give presentations. Physical therapists also come to talk about Pelvic Floor Dysfunction as it relates to Endometriosis.
“I suffered for 27 years before getting involved in advocacy,” said Philippa Bridge-Cook. “I was diagnosed at 34, 9 years ago. I started symptoms with my first period at age 13.
My biggest challenge was getting diagnosed. Once I knew I had endo, I found the amazing in-person Toronto support group right away, because I knew the facilitator from working with her previously. Luckily because of that group, I was right away connected with people who understood the impact of endo. It took some time to educate my family and friends, but now I have a very supportive circle of friends and family.
TENC was founded in 2012, by some members of the Toronto support group who felt that a more organized effort for support, education, and awareness for endometriosis was needed in Canada. We started with the ambitious project of the first ever patient symposium for endometriosis in Canada, which was held successfully with sold out attendance in 2012. The follow-up symposium in 2014 was equally successful.
TENC started an online support group on Facebook, which now has over 1,200 members. Their website connects people across Canada with any in-person support groups run by volunteers in their area. Their education efforts all are aimed at creating awareness for all women.
TENC is planning the next symposium for 2017. In addition, they have launched a seminar series focusing on different aspects of endometriosis, including a seminar on endometriosis and infertility in early 2016. To date, these smaller seminars have all been held in Toronto, where TENC is based. Videos from the next seminar will be shared online, and eventually they will expand to hold seminars across Canada.
Diagnosis of endometriosis in teenage women is an important effort. TENC is developing a program for education about endometriosis in schools. This article is directed at young women: http://www.theperiodblog.com/guide-to-periods/endometriosis-everything-you-need-to-know/. Using social media, they are reaching some young women, who participate in support groups and seminars.
About The Center for Innovative GYN Care
The Center for Innovative GYN Care is dedicated to providing information and materials for women to help navigate the complicated healthcare system. Our minimally invasive surgical specialists have seen firsthand the pain and anxiety women with endometriosis face before getting a proper diagnosis, evaluation and treatment. We have also seen what delaying a diagnosis and surgery performed poorly can do to a woman. The longer a woman suffers with endometriosis, the likelihood of extensive damage to her reproductive organs increases.
Until there is a cure, it is essential that advocacy and research efforts like those mentioned above are expanded. CIGC works closely with endometriosis awareness organizations to ensure that our patients have access to the support they need, and have the most up-to-date information about the most effective minimally invasive endometriosis removal to manage pain, bleeding and infertility.
Patients need tools to help them make the best choices about choosing a surgeon. We have created a list of questions for women to take with them to a doctor’s office, with guidance on what to expect. This one-sheet helps patients decide if the doctor and treatment is right for them.
CIGC minimally invasive GYN surgical specialists Dr. Paul MacKoul, MD and Dr. Natalya Danilyants, MD developed techniques to perform endometriosis excision or resection using only two 5MM incisions. Using DualPortGYN, our surgeons can thoroughly remove all endometriotic implants and lesions in an outpatient setting, allowing women to return to their lives faster, with less pain.
CIGC’s specialists also train GYN surgeons around the country in innovative techniques and procedures that optimize GYN surgical care.
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