EndoFound's 5th Annual Medical Conference

EndoFound's 5th Annual Medical Conference

As an endometriosis patient and advocate, it was so exciting to attend the EFA’s Annual Medical Conference and Patient Symposium. There was a lot of wonderful information shared by some of the top doctors who are dedicating their lives to improve the quality of life for endometriosis patients worldwide. Co-founders of the EFA Dr. Tamer Seckin and Padma Lakshmi were there every step of the way sharing their insights and experiences as the days progressed. 

Here are some of my favorite insights from the conference!

  1. Liselotte Mettler, MD, PhD - Myths and realities of endometriosis today and tomorrowRealistic Expectations of Endometriosis Treatment: One of the things that struck me most at the conference was the agreement from the majority of doctors that treating endometriosis is complicated and both the patient and the doctor need to understand this fact. Many gynecologists and reproductive endocrinologists will operate on patients and tell them after, "we got most of it. You should be fine." Dr. Mettler stressed that there is no cure for endometriosis. She also stressed that endometriosis needs to be looked at as a chronic disease that needs a lifelong management plan. Dr. Salgado spoke about the high recurrence rate due to the presence of microscopic disease. He stressed that doctors cannot promise patients that they are going to cure them.
  2. Endometriosis and Ovarian Cancer: Dr. Kurman, a distinguished Professor of Gynecologic Pathology at the Johns Hopkins University School of Medicine, talked about the link between endometriosis and ovarian cancer. Robert Kurman, MD - Endometriosis and ovarian cancer: is there a connection?He finds that women with atypical endometriosis are more likely to develop ovarian cancer. There are two types of ovarian cancer that have been linked to endometriosis, clear cell and endometrioid. A few doctors at the conference, including Dr. Harry Reich, stressed that women who have completed their families should think about surgically removing their fallopian tubes to lower their risk for ovarian cancer. Lone Hummelshøj, a worldwide endometriosis advocate and educator, warned that even though there are links to endometriosis and cancer, it is important that endometriosis is recognized as a major disease in itself. She feels it doesn't need to piggyback on any other diseases to merit attention.
  3. Endometriosis and Infertility: Jeffrey Braverman, MD - Outsmarting Endo - Diagnosing silent endometriosisDr. Braverman, a reproductive immunologist, spoke about the hidden factors that may be making conceiving and keeping a pregnancy very difficult for endometriosis patients. In fact, he finds that many patients who come to him with infertility and recurrent pregnancy loss end up having endometriosis, even though they are asymptomatic. He looks at an embryo transplant like an organ transplant and asks the question, "Is the patient's immune system preventing a successful pregnancy?" He feels that reproductive endocrinologists need to understand more about recurrent pregnancy loss and the connection to endometriosis. He feels that the right surgeon can only help an endometriosis patient. He stresses though that ablation should never be done on the ovaries. In his practice, he has found that women who were treated for endometriosis, surgically and with immunological therapy, go on to have successful pregnancies. Whether endometriosis is mild or severe, immunotherapy and surgical treatment can improve egg quality, quantity and implantation.
  4. Endometriosis and Pregnancy: Dr. Mettler and Dr. Giudice were both recognized for their incredible work in Reproductive Linda Giudice, MD, PhD, Msc - Pathophysiology of endometriosis: pain, infertility, and ...unknown outcomes?Medicine at the conference. They both touched upon endometriosis and pregnancy. Dr. Mettler shattered the myth that most doctors perpetuate when they urge patients to "just get pregnant" to resolve endometriosis. She finds that statement false and recognizes that some patients go on to have painful pregnancies. Dr. Giudice urged the medical community to not only work on maximizing pregnancy rates for patients with endometriosis, but work on minimizing adverse pregnancy outcomes. Dr. Braverman also talked about many of his endometriosis patients who do get pregnant but go on to have early losses or very complicated pregnancies. They all agree that reproductive endocrinologists and gynecologists working directly with patients need to be aware of these truths and work to research and resolve them.
  5. Frank Chervenak, MD -Professional responsibility: An essential dimension in the management of endometriosisLimited Doctors: How many patients WISH that their first surgery had been with an endometriosis excision specialist? Probably too many to count. Dr. Chervenak stressed the ethical obligation for doctors to be aware of their professional limits and refer to other doctors when necessary. If endometriosis patients have bowel, bladder, leg or back symptoms, they should be seeing an excision specialist who works in a team if necessary. He feels that people should only do the surgery if they are competent to do so. Lone Hummelshøj stressed the need for physicians, as a group, to determine how to develop standards of experience and expertise in treatment for all.
  6. Listen to the Patient: Many endometriosis patients feel that when they go in to see their doctors David Keefe, MD - Societal perceptions and ethical imperatives in the decision-making for the treatment in of fertility and pain: incomplete procedures, misrepresentation, ethics in IVF issuesand talk about their symptoms, they aren’t being heard. Upon leaving their doctors office, patients feel dismissed and deflated. Dr. David Keefe stressed the importance of active listening during patient consults. He feels that doctors have an ethical obligation to leave sufficient time for each patient to make sure she understands what is being said. Dr. Keefe also encourages doctors to figure out patients life priorities and what risks they are willing to take before coming up with a treatment plan.
  7. The Truth about Robotic Surgery: I was astonished to hear the truth about robotic surgery is that there is no absolute truth! Arnold Advincula, MD -  The role of robotic surgery in deep endometriosisDoctors argued effectively for both sides of the debate regarding whether or not robotic surgery is a useful tool for endometriosis-excision surgeons. Dr. Einarsson argued that there is no available evidence that robotic surgery has any more benefit than conventional laparoscopy. Some surgeons feel the current robot is too bulky, too expensive and not a good fit for the type of meticulous surgery that is needed to excise the disease. Other doctors, like Dr. Advincula, have found great success with using this tool and advocated it will only improve over years. He did stress though that patients should NOT pick doctors just because they do robotic surgery. Dr. Advincula feels that doctors not only have to have the technical skill, but they ALSO have to have cognitive skills. He stressed that finding an experienced endometriosis excision specialist is crucial when picking out a doctor because if doctors can't recognize the disease in 2D looking at it in 3D is not going to help. He said, "Magic's not in the wand, it's in the magician."
  8. Endometriosis and Adenomyosis: Many patients who have endometriosis also suffer from adenomyosis. António Setúbal, MD - Adenomyosis: diagnosis, treatment and impact on pain and fertilityDr. Setubal talked about how an MRI, ultrasound, HSG, hysteroscopy, cystoscopy and laparoscopy are all tools used to diagnose adenomyosis. He also spoke about how adenomyosis is still an unknown disease. He finds the best way to treat patients suffering from this painful condition is to try and find a balance in how not to overtreat or undertreat the disease. He feels that conservative surgery should always be tried first, especially in women who want to preserve their fertility. A hysterectomy is considered when a patient desires it, family planning is complete and the symptoms are incapacitating. Dr. Mettler warned that some patients who have had a hysterectomy, may have relief from their adenomyosis pain, but may still suffer from endometriosis, dispelling another myth that many general doctors believe.
  9. Endometriosis and Pain: The world needs to know that endometriosis patients are in pain. Byllye Avery - Medical Conference 2014Advocate Byllye Avery stressed that patients do not need to suffer in silence. Dr. Mettler recognized that some patients who have Stage 1 endometriosis have a lot of pain and we have to pay attention. She also stressed that the pain endometriosis patients feel directly correlates to their quality of life. Dr. DeGregoris went into depth regarding endometriosis and pain. He narrowed the pain endometriosis patients feel into two types of pain, nociceptive pain and neuropathic pain. Nociceptive pain is a sharp, aching or throbbing feeling. Neuropathic feels like a burning. Even though these pains can happen at the same time, it is crucial for doctors to sort them out because each type of pain requires different medical treatment. Gabapentin or Cymbalta can help neuropathic pain caused by endometriosis. Opioids are more effective for nociceptive pain than for neuropathic pain. But a warning for patients, opioids should only be used for short term purposes, during pain flares. Using opioids over time can actually give patients a lower tolerance to pain.

Dr. Seckin and his team at the EFA put together an exciting and informative Medical Conference and Symposium. To learn more about what was presented and to see actual videos of the presentations, go to: //www.endofound.org/video



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Patient Reviews

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  • Winnie Chan

    I’ve seen many obgyns over the years explaining my monthly symptoms during my period...but eventually it became a daily struggle with these pain. It feels like a poke here and there near my right pelvic region. I was given birth control pills for the past ten years but honestly, it didn’t help at all. I was in bed whenever I…

  • Rachel Grobman

    Dr.Seckin is so much more than a surgeon. His passion for helping endometriosis sufferers and determination to improve the quality of life in all of his patients is undeniable. I remember when my gynecologist first told me I needed a laparoscopy. Her exact words were "I can do the surgery, but if you were MY daughter- I'd send you to…

  • Esin Kocabiyik

    I was there for hysterectomy but then I found out that I also had endometriosis.My both surgeries went excellent and I feel great!.I am so thankful to Dr.Seckin and all his team for making my journey smooth!

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  • nikoletta pados

    I am a physician who suffered from deep infiltrative endometriosis. I needed laparoscopic surgery, so I went to see my former gynaecologist and he performed the procedure (a surgery which he supposedly does hundreds of times a year) last November. I had severe pain again when I had my period in January and was advised to go on taking a…

  • Grace Larsen

    After years of excessively painful periods, a serious loss of quality of life, and a series of uninformed and uninterested doctors, Dr. Seckin and Dr. Goldstein turned my life around. I was told I woke up from my surgery almost a year ago with a smile on my face, and I haven't stopped since. Before I heard of Dr. Seckin,…

  • Nicole Novakowski

  • Jacqueline Galindo

    Dr Seckin and his team gave me back my life! Tomorrow will be 1 month since my surgery and I feel great. Dr. Seckin, Dr Liu, and Dr Goldstein are not only beyond words talented and amazing Doctors, but they are also genuinely wonderful and caring people. I cannot say enough great things about Holly, Asiye and Kim as well.…

  • Anna Lu

    Dr. Seckin and his staff spared me from years and years of heavy periods and unbearable endometriosis pain. After having surgery with him (my first) I can now function like a regular human. No more eating NSAIDs like candy and calling out sick from work. Thank you, Dr. Seckin!