Monday, April 1, 2013

Notes from Endometriosis Conference 2013

I was so excited to be able to go to the Endometriosis Foundation of America's Endometriosis 2013 Conference titled: The American Perspective
It was amazing being in a room with the top world experts on Endometriosis. What I found most overwhelming was how every doctor admitted as much as they know about endometriosis compared to other doctors, there is still so much more they don't know about this chronic, debilitating disease. I love that there are teams of doctors all around the world who are taking our disease seriously. I found the information overwhelming as a 34 year old woman who is now done with the fertility journey. I wish I knew all of this information a decade ago! Early detection makes all the difference.
I also found that being involved in the Endometriosis Twitter community is an amazing resource. From talking to other patients at the conference I found that being connected to hundreds of other patients through Twitter has given me more information and support than I can find anywhere else, and that is empowering. We are on the front lines of this disease. The more we communicate with each other about symptoms and treatments, the better we can improve our quality of life as an entire community!
Below are the summaries of the talks! I will try to do a "Top Ten" post this week for those of you that don't want to read four pages! Please list your reactions in the comments. If there is something that surprised you, or that you disagree with, feel free to post!

What is the Greatest Gift I Gave to my Daughter? Victor Gomel, MD

Dr. Gomel is a pioneer in both microsurgery and operative laparoscopy. He stressed how at age 35 the rate of miscarriage and chromosomal abnormalities drastically increases in women. He talked about how women are born with 2-4 million eggs, by the time of menstruation women are down to 400,000 or less. He talked about the importance of the cryopreservation of ovarian tissue, oocytes and embryos for women with endometriosis and the option of donor eggs for older women trying to get pregnant

Egg Banking: Buying Reproductive Insurance Avner Hershlag, MD

Dr. Avner Hershlag serves as Chief of the Center for Human Reproduction, where he has cared for patients for more than 20 years and established successful programs, including: donor egg, preimplantation genetic diagnosis (PGD) and egg freezing/fertility preservation. He spoke of the tough situations women with endometriosis are facing today in our modern world. Obviously, with the quality of eggs decreasing after age 35 and the continual growth of endometriosis, it is certainly better to get pregnant at a younger age. But what if you haven’t found a partner yet? What if a woman feels it is too early in her career to get pregnant? He talked about how egg cryopreservation has become a wonderful option for young women with endometriosis. Cycles using frozen eggs are just as successful as cycles using frozen embryos. For women with endometriosis, cycles using frozen eggs and embryos have an even greater chance of leading to a successful pregnancy as opposed to a fresh IVF cycle. He suggests that to have the best chance of pregnancy later on in life, young women with endometriosis should freeze up to 16-20 eggs to use when they are ready.

Egg Freezing as an Option for Endometriosis Patients Jamie Grifo, MD

Dr. Jamie Grifo, M.D., Ph.D is the Program Director of the New York University (NYU) Fertility Center. Since 1995 he has been the Director of the Division of Reproductive Endocrinology at the NYU School of Medicine where he also holds the faculty appointment of Professor of Obstetrics and Gynecology. He started off his lecture by saying, “Biological clocks tick a little bit faster for women who have endometriosis.”  He told a funny anecdote about how doctors in Italy became experts in egg freezing. He told of how the government, which is heavily influenced by the Pope, would only allow three eggs to be fertilized. They began to have many leftover eggs from patients to experiment with. They were the first to successfully freeze eggs. Dr. Grifo also stressed the importance of doing pre-implantation genetic diagnosis (PGD) on embryos to achieve a greater chance of a successful pregnancy. He also stated how it is still not that affordable to have your eggs frozen, but there is hope that patients with endometriosis will be treated similar to cancer patients in that there is a medical necessity to have eggs frozen at an early age for optimal fertility.

Fertility Conscious Endometriosis Surgery Tamar Seckin MD

Dr. Seckin is the leading world expert in endometriosis. He is also one of the founders of the Endometriosis Foundation of America who put together the conference. He talked about the findings of the many cases he has done over the years. He believes the only way to relieve endometriosis pain is through excision surgery. He spoke to higher pregnancy results in patients after excision surgery. Many doctors feel that surgery can actually harm endometriosis patients, exacerbating the endometriosis, causing more adhesions and actually lowering fertility by damaging the ovaries. He stressed that is not the case of you get an expert surgeon. Dr. Seckin felt that a regular Reproductive Endocrinologist who did not have experience with removal endometriosis would not be able to remove all of it, especially in the bowel area. This is why many women are still in pain after surgery. He also strives to preserve the ovarian tissue and carefully piece together the ovaries enhancing fertility and not limiting it more. He also stressed an early diagnosis is ideal and has been working with his foundation to raise endometriosis awareness in schools with school nurses. He stated, “The quality of surgery in a timely matter is imperative.”

Early Pregnancy Outcomes for Women with Endometriosis Jamie Knopman, MD

Dr. Knopman has extensive research experience in the areas of fertility preservation for medical and elective indications, monozygotic twinning, controlled ovarian stimulation for in vitro fertilization and ovum donation. Dr. Knopman stated that for women with endometriosis, with every month fertility is reduced. Endometriosis affects everything from the quality of the eggs, to their maturation to embryo implantation. She also stated that endometriosis eats away at the ovarian egg reserve. She also stated a study that found women who did not have endometriosis, who used donor eggs from women with endometriosis had a much lower rate of achieving pregnancy. I had always heard that endometriosis could affect the uterine lining, dramatically decreasing the chance of a successful pregnancy for women with endometriosis. But this study clearly shows that women with endometriosis had a lower egg quality as well. She explained that all women have peritoneal fluid.  In women with endometriosis, this fluid contains cytokines which causes inflammation.  This fluid affects the follicular fluid which incases the eggs and affects them adversely. She also found that women with endometriosis have a higher success rate using frozen embryo transfer as opposed to doing a fresh IVF cycle. She has found that women with endometriosis have a higher rate of pre-term delivery, pre-eclampsia, c-section and antepartum bleeding.  Women with endometriosis often have a high-risk pregnancy, although most OBGYNS do not recognize that fact.

When IBS is Really Endometriosis on the Bowel Ken Sinervo, MD

Dr. Ken Sinervo is the Medical Director for the Center for Endometriosis Care. Dr. Sinervo says, "Through the constant refinement of surgical technique, it is possible to remove all endometriosis. We try to be as conservative as possible with a woman's reproductive organs while aggressively removing all visible manifestations of endometriosis, no matter where present.” He stated that 10% of women are known to suffer from endometriosis. He has found endometriosis patients to have painful periods, pelvic pain and bladder symptoms.  One third of patients have constipation and two thirds have diarrhea.  He said it is not uncommon for him to find that women with endometriosis have both alternating constipation and diarrhea. 40% of women report to have severe intestinal cramping and bloating throughout their cycle. 20% of women have painful bowel movements.  Many women with endometriosis have blood in their stools and have palpable masses. He spoke of the importance of a colonoscopy to rule out colon cancer, which has many of the same symptoms as endometriosis. He talked about the importance of having a skilled surgeon to remove endometriosis off of the bowel to not damage the bowel. He feels that when excision is used meticulously, a patient has a low chance of recurrence of her endometriosis and can gain an excellent quality of life, something that has often been missing for years.

Endometriosis & Painful Sex Lone Hummelshoj

Lone Hummelshoj is the founder and Editor-In-Chief of Endometriosis has a profound impact on relationships. 56% of women with endometriosis reported that their relationship was negatively impacted due to the disease.  For 30% of women with endometriosis, painful sex is their main symptom.  60% of those women report that there are often/always in pain during intercourse. 54% often interrupt or avoid sex due to the pain. 67% of these women have recto-vaginal endometriosis.  The endometriosis grows in places that are irritated during intercourse. Endometriosis causes 20% of relationships to end in divorce.  Many of the drugs that women go on to help with endometriosis results in a lower sex drive. Ms. Hummelshoj encourages couples to schedule intimate time and to explore other ways in which to be intimate other than intercourse.  She encourages women to see if there are times in their cycle in which their endometriosis is less inflamed or other positions that do not exacerbate the endometriosis as much.  She encourages couples to see a sex therapist to talk about feelings of rejection, guilt, sadness or frustration.  She encourages couples to have an open line of communication.

Drug Use or Abuse? The Need for Responsible Pain Management Donna Kesselman, MD

Dr. Kesselman is an expert in treating pain and endometriosis at the Integrative Pain Center in New York. She serves on the Advisory Board of the Endometriosis Foundation of America and recently spoke at their Third Annual Congress. She is presently co-authoring a book about living with endometriosis from the patient’s perspective. She suffered from endometriosis herself.  She talked about how many times women with endometriosis deal with untreated pain. They live a life of chronic pain.  Many women try and treat the pain themselves with the overuse over the counter drugs that can really hurt other parts of the body. She talks about the importance of going to a pain doctor, like herself, to find the right medicine to help.  She said there are many, many options out there for women. She even mentioned a “vaginal valium” that can be given before intercourse to help with pain. But she stressed that treating the underlying cause is most important and that surgery may be needed to excise the endometriosis. She also stressed that physical therapy can also be quite helpful for endometriosis patients. She also stressed that sometimes after surgery patients still feel pain and that is because your brain establishes pain pathways over time and has to be re-programmed.

Endometriosis & Mind: Psychology of Pain Arnold Wilson, PhD

Everyone patient who gets surgery to remove endometriosis at Columbia School of Medicine also has to go for a psych consult and many see Dr. Wilson. Dr. Wilson spoke compassionately at length regarding the profound impact living in chronic pain has on a woman. He talked about the importance of having someone who believes in your pain and listens to all your symptoms. Endometriosis is not a well-known disease, yet it is a disease that causes chronic pain and debilitating symptoms. The disease can be very hard to diagnose and often doctors, friends, relatives, and employers dismiss the cries of endometriosis patients. They are seen as crazy, weak or hypochondriacs. This is psychologically so harmful to the suffering patient.  One woman woke up after having extensive surgery to remove her endometriosis asking, “Please tell me it was in there! Please tell me I am not crazy!” 

Current Research Priorities in Endometriosis Stacey Missmer, PhD

Stacy Missmer is the Director of Epidemiologic Research in Reproductive Medicine at Brigham and Women’s Hospital. There are very little research studies regarding endometriosis despite the fact it affects 10% of women. Some interesting facts that were stated were leaner girls were found to be at a higher risk for endometriosis. Women with endometriosis have twice the risk of getting ovarian cancer than other women. But in reality, she said it was 2% higher as compared to 1%, so still not that high. There have not been studies that researched the effect that fertility medication has on women with endometriosis in regards to cancer. She found that women with endometriosis on average spend 18 days a year in bed due to the disease which obviously very much effects employment.



  1. Wow. This sounds like a GREAT conference. So glad you have been able to gain info and support from this community. As someone without endo (I have PCOS), I have really appreciated all of the bloggers who have been talking about endo lately. I'm grateful for the education and awareness. So thanks!

  2. Thank you so much for your thoughts - I so appreciate you taking the time to blog about this! Since I don't have an endo support group in my community, I rely on twitter for information. Blessings on you and yours!

  3. Endometriosis was the first real struggle my husband and I had to endure when we first were married. We wanted children so badly and the hurt of not being a mom was very difficult to endure. One outpatient surgery procedure nearly killed me when I had difficulties with the anesthesia and ending up in ICU. Thankfully, after 5 years, I finally got pregnant with our first boy whom we named Nathan meaning "Gift from God." We have 3 boys, all in high school now. But we cherish them all the more because of years of infertility.

  4. Thank you all so much for reading and commenting! Em it was a great conference. I feel like I need to learn a lot more about PCOS. SO many women in our community have it. Brandee twitter is my support group as well! It is so wonderful to be connected to so many women. Blessings to you as well. 3 boys kcarlisle! That is so wonderful. Seeing as they all are in high school, it tells me you went through all of this when there was even LESS info out there and less support. I can only imagine how much harder you had it a mere 15 years ago. So glad to connect with you.

  5. Great one Casey. Your creative ideas and innovative thoughts are really appreciated. Thank you for sharing such a lovely experience of Endometriosis. GOD Bless.

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  6. Very interesting and helpful. Well done.