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 www.Endometriosis.org. 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.
