We are ENDOSTRONG

Recently, I heard Dr. Tamer Seckin, co-founder of the EFA and a leading world expert in endometriosis surgery, describe endometriosis as a disease in which the patient feels as though she is constantly being tortured.   I thought that was quite an accurate description of a disease that has plagued me since I was 14 years old. Chronic pain and fatigue, excessive bleeding and swelling, diarrhea and bladder issues are just some of the many symptoms that I and so many other women in the endometriosis community face on a daily basis.

Unfortunately, the general public is largely unaware that this disease exists, never mind the tremendous impact it has on our lives.  So we are often dismissed as constantly sick for no good reason, weak and even hypochondriacs. No one can see the way our organs are fused together or how adhesions are often pulling our insides in a way that can make even standing up extraordinarily painful.  As wives, daughters, mothers, friends, co-workers, and students we are expected to live up to our societal responsibilities and roles as we endure the physical and emotional side effects of this debilitating disease.  We often choose to suffer in silence and carry the burden of this disease alone, because honestly, it is a hard and often awkward disease to explain, “You see, it all started when the lining of my uterus somehow escaped my uterine cavity…”  But we know we are not hypochondriacs. We are simply amazing.

Endometriosis patients are some of the strongest, most determined and most resilient women I have ever met. We are ENDOSTRONG.  What does ENDOSTRONG mean?  ENDOSTRONG means listening to our bodies when we need to take a sick day or even medical leave because the disease is too overwhelming. ENDOSTRONG means choosing another doctor because we are not getting the medical treatments we need. ENDOSTRONG means bravely facing our 3^rd, 4^th, or in my case, 5^th endometriosis related surgery with no guarantee of relief, only a hope and a prayer that it will work.  ENDOSTRONG means accepting the lifestyle limitations endometriosis can bring and accepting the help of those around us when things get bad.  ENDOSTRONG means addressing the emotional impact of this isolating disease whether it’s seeing a therapist or joining a support group.  ENDOSTRONG means taking the time to take care of ourselves even though we as women have been taught from an early age to put our needs last.  ENDOSTRONG also means helping to take care of each other by forming a supportive community and sharing our stories and experiences. ENDOSTRONG also means raising public awareness and banding together to find a cure.

Who is ENDOSTRONG?  The nurse, who despite her pain, gets out of bed and works the night shift taking care of critically ill patients is ENDOSTRONG.  The young professional who passes her tax exam shortly after recovering from surgery is ENDOSTRONG.  The hopeful mother who is on her 5^th IVF cycle after experiencing multiple losses is ENDOSTRONG.  The high school senior who despite missing her graduation because of her period manages to keep a positive outlook on life and have hope for the future is ENDOSTRONG. All of the women in third world countries who cope with this excruciating disease without any healthcare, medications or surgical relief are certainly ENDOSTRONG.  We all are the faces of endometriosis and together we are a force to be reckoned with.

I am proud to be a part of this community of women. We are survivors.  Every day we accomplish the ordinary while dealing with the extraordinary. It is an honor and a privilege to be working with the Endometriosis Foundation of America and, through these blogs, to be able to communicate with even more members of the endometriosis community. I hope we can start an endometriosis revolution and combine our extraordinary strength to raise money to find a cure for this disease while raising public awareness for our cause.   My dream is one day when my daughter is grown, 20 years from now, she will say, “Wow, I can’t believe when you were growing up so many people never even heard of endometriosis.  I am so glad they found a cure. ”

To help spread awareness and raise money for endometriosis research,  I have started a store on Zazzle where any proceeds I make from the sales will go directly to the Endometriosis Foundation of America. I was inspired by my friend,  Jen Rutner , who has been selling the #hope T-shirt for years now!  We have t-shirts, we have onesies, we have furbaby accessories and we also have ENDOSTRONG stickers specifically designed to fit onto Sharps containers for ENDOSTRONG women who are cycling. Please check the store out and let me know what you think!

You will also be able to find my official EFA blogs posted in the future at  http://www.endofound.org/ . But please note this is my personal website and posts on this site may or may not reflect the views, mission and beliefs of the EFA. 

How We Soared: Advocacy Day 2013

 

I am having trouble putting into words one of the most incredible experiences of my life.  I am not the same person that I was before I attended RESOLVE’S Advocacy Day on May, 8 2013 in Washington, D.C.. I went to Advocacy Day proud to represent the infertility community and excited to advocate for those who are in the midst of their struggles. I also went to Advocacy Day to educate the fertile community, many of whom do not see infertility as a medical issue but rather as an unfortunate circumstance that adoption can cure.  Adoption is a phenomenal option for couples struggling with infertility, but medical procedures that treat the disease should also be viable, affordable options for building a family. My hope in participating in Advocacy Day was that by starting conversations with our Congressional representatives about our journey, we could chip away at the stigma placed on infertile couples so that when my daughter reaches adulthood she will not have to fight so hard to get the services she may need. More fundamentally, I wanted to break the silence surrounding this condition that so often leaves couples feeling helpless and misunderstood.

So I packed my superhero cape and my fancy new suit dress, and traveled to D.C. ready to save the infertile men and women of the world. But what RESOLVE and the amazing infertile community did when I got there was take my cape off and wrap it tenderly around my shoulders, like a blanket, and healed my heart in a way I didn’t think possible.  The night I arrived there was a reception that allowed the advocates to socialize in a more informal setting. It was there I finally got to meet some of the amazing women I had been in contact with on the internet for several years.  And I had the pleasure of speaking to other women whom had traveled from all over the country. Although I had not met any of these incredible women before, there were no awkward conversations. We all had the common thread of infertility to break the ice.  We were part of a sisterhood forged by pain, heartache, devastation, humility and loss.  Sometimes infertility can make you feel so alone, even if you are in a room with 100 people. Simply walking into the reception and feeling that I was immediately understood, down to my deepest insecurity and vulnerability, made the 5-hour train ride to D.C. worth it.

After the reception, a group of us went out to dinner. As we introduced ourselves, I was humbled and honored to be with such a strong group of women.  We sat and talked like we had known each other our whole lives. No one asked me, “Are you going to have more children?”  No one said, “Maybe if you just relaxed, it could happen.”  Experiencing infertility has changed the way I view the world, and these women had the same unique world view that I did. They too get a sick feeling in their stomach when they walk by the pregnancy tests in the local drug store.  They too have had to bravely congratulate and buy baby gifts for so many friends who are now on their second, third or maybe even fourth child.  Talking with these women about shared experiences was, for me, very uplifting and healing.

The next morning, before we left to speak to our Congressional leaders, there was an information session on the importance of being at Advocacy Day.  I cried as women got up and shared their experiences of pain and loss with the audience.  Their pain was my pain. My passion for the cause was further ignited by speakers reminding me that we had everything to gain by speaking with our representatives today and nothing left to lose.  Infertility had already taken so much from us already.  The rest of the day I walked through the offices of Congress talking to aides who can actually make a real difference in the world.  I told them my story, and how the two bills we were advocating for were so very important. I shook their hands, looked them in the eye and asked them if I had their support.  Wow.

How could I be doing all of this? There were days along my journey that I felt completely broken. Suffering from endometriosis, a disease that causes infertility and chronic pain (as if I didn't need a constant reminder of my condition), there are STILL days I feel completely broken.   Some days at the lowest points of my journey, it is so difficult to stop feeling devastated to the core. It often takes a conscious reminder to say, “Even though my reproductive parts are broken, I am not broken. I am not just my reproductive parts. Before I went to D.C. for Advocacy Day, I kept saying to my husband, “I cannot believe I am doing this. Can you believe I am doing this?”  When you feel physically sick, hormonally unbalanced and emotionally drained for so long, sometimes taking a walk down the street seems like an insurmountable feat.  After I stopped trying to conceive last year I have been slowly healing and coming to terms with the profound, lasting impact infertility will have in my life.  Going to D.C. to advocate for the infertility community helped me to heal those broken pieces.  As I got on the train back to New York that night, I felt a little more whole.

 It was then that I started thinking about how getting a bill passed is actually very similar to an infertile person trying to conceive. That is why the RESOLVE advocates are the fiercest, most competent advocates to hit Capitol Hill.  There will be times when we will have to navigate lots of red tape and do a lot of the leg work ourselves and yet we will channel the patience and tenacity to get the job done.  There will be times when we may have to convince other professionals WHO SHOULD KNOW BETTER that there is absolute truth in what we are saying and yet we will stand by our convictions even though we may be dismissed or even persecuted for our beliefs.  There will be times on our journey that we may have to compromise to reach our ultimate goals and yet we will find a way to work with what we have been given for the greater good.  There will be times that we are willingly acting under the uncertainty that all of our hard work and fighting may lead to nowhere and yet will keep strong our focus and determination. There will be times that we will feel hopeless and discouraged by this difficult process and yet we will dig deep and stay afloat.  Sound familiar? This is what infertile women do every day.

Allow me to re-word a quote from Dr. Martin Luther King, Jr., “The ultimate measure of a (wo)man is not where (s)he stands in moments of comfort and convenience, but where (s)he stands at times of challenge and controversy.”  I would like to thank all of the women whom I was privileged to stand beside on Advocacy Day.  I would like to thank RESOLVE for doing an incredible job of organizing this event.  I am a better person for having met all of you and for having been there.  I am so incredibly grateful for the opportunity to change infertility from a condition of powerlessness and despair to a cause for empowerment and strength, when for so long it has led me to feel broken and inferior. Here’s to seeing even MORE of you for Advocacy Day 2014. Next year I will not bother packing my super hero cape. The ability to stand united and tell our stories is what allowed our hearts to soar.

How to Help:

I urge you to check out the two bills we are advocating to get passed. Write to your Congressional Leaders and ask them to support these measure that help those in the infertile community.

The Family Act: This bill makes infertility treatments more affordable to middle class families.

http://www.resolve.org/get-involved/family-act-of-2011.html

The Women Veterans and Other Healthcare Improvement Act: The bill gives access to the needed infertility treatments that wounded veterans need to conceive and start a family.

http://www.resolve.org/get-involved/women-veterans-and-other-health-care-improvements-act.html

Meet Your Advocates!

I am so honored and grateful to be traveling to Washington D.C. next week for RESOLVE Advocacy Day 2013. http://familybuilding.resolve.org/site/PageServer?pagename=advday_home I have been struggling with infertility for almost 8 years. I spent the first four years of my struggle suffering in silence, afraid to speak out. I was the only one I knew who was having infertility problems while so many family members and friends got pregnant and had their first and sometimes even second and third children, while my husband and I waited for our baby.

It wasn't until after I had my daughter, and we continued our infertility journey to try and conceive another child, that I found the online infertility community and was able to draw support from and give support to other women who knew exactly what I was going through. A whole new world opened up to me and I am so grateful to have found it.

After a very difficult road filled with much loss and heartache, we have decided to stop trying to expand our family. But I remain here in the infertility community as an advocate to support other women and to try to change society's views on infertility through our own personal story. I am not alone. Advocating with me are women from not only around the country, but from around the world.

Below I have answered questions about why I am going to RESOLVE Advocacy Day 2013. I have also listed the blogs of the brave women I am proud to be standing beside on May 8th. Check out their blogs to find out why they are going to RESOLVE Advocacy Day 2013.

1. Where are you in your infertility journey right now? In one sentence! 

After enduring 3 IUI's, 3 IVF's--2 with PGD, 4 miscarriages, 5 endometriosis related surgeries my husband and I are done TTC and are so grateful for our 5 yearold daughter.

 

2. What inspired you to go to RESOLVE Advocacy Day 2013?

As a social worker, it has been my dream to speak with Congress about an issue I am passionate about. I can't imagine being more passionate about anything else. Then I heard about all the ladies from Twitter who were going! I was sold.

 

3. What do you want Congress to understand about infertility?

Infertility is a medical issue. Infertility is a disease.  The infertility community must NOT be dismissed.

 

4. What are you most looking forward to about Advocacy Day?

Honestly, laughing and socializing in person with friends I have met through the infertility Twitter community.

 

5. What is one thing other advocates will be surprised to learn about you when they meet you?

  When I start talking passionately I become a typical New Yorker-- hands flying everywhere. I can get unintentionally loud and my accent shines.

Meet some of the other advocates who are going!

Fran Meadows
www.secretinfertility.com

Jen Rutner
http://jenrutner.com/

Miss Ohkay
http://missohkay.wordpress.com/

Whitney Anderson
http://www.whitneyanderick.com

Lauren
http://notjustanarmywife.blogspot.com/

Holly
http://ready2bmom.blogspot.com/

Carrie
http://pregnant--pause.tumblr.com/

Katie
http://www.fromiftowhen.com/

And we have an advocate from Canada! How awesome is that! So impressed by her courage to come such a long way! Introducing....
Kelley
http://readyformymiracle.wordpress.com/

My Endo OTC Meds

So these are just a sampling of the OTC meds I will be packing in my carry on bag on my flight. What OTC meds save your life when dealing with endometriosis?

Uterus Transplants: A New Hope

Amazing, hopeful news for infertile patients around the world! The first successful uterus transplant was performed in Turkey on 22 year old Derya Sert, a woman born without a uterus.

Here is a video interviewing her doctor!

 

 

After healing from her transplant, Derya was ready to try and get pregnant. She was in fact born with healthy ovaries, so she went through IVF.  After her egg retrieval and embryo transfer,

Derya is now two weeks pregnant!

http://abcnews.go.com/WNT/video/successful-uterus-transplant-recipient-now-pregnant-18948813
        Doctors say that she may be at high risk for miscarriage and they are taking one day at a time. But even to get this far is amazing and very hopeful! What does this mean for the many women who because of imperfections or disease in their uterus cannot get pregnant or cannot carry a baby to term? I think it opens up a whole new world of possibilities!
        The infertility community talks a lot about hope. Most often, hope is all we have to hold on to.  Hope is what gets us through.  There is a great quote by Dr. Martin Luther King, Jr. that I keep close to my heart, "We must accept finite disappointment, but never lose infinite hope."  This new medical breakthrough certainly will restore infinite hope to those who have endured great disappointment along their journey with infertility.

Why I Am Still Here

Ever since my husband and I ended our seven year battle with fertility treatments and decided not to pursue adoption, I have been trying to figure out what to do with my life. I am incredibly grateful that we were able to have a baby with the help of intrauterine insemination, and that I have been able to stay home with her for the past five years.  But my baby is no longer a baby anymore! My daughter is headed to Kindergarten in the fall and I am headed back to work. I have been trying not to think about all the what-ifs and could-have-beens with respect to our repeated attempts to have a second biological child. What if I didn't have endometriosis? What if my pregnancies hadn’t miscarried?  What if one, just one, of our embryos didn't have a genetic mutation? What if the embryo adoption had worked out?  Then I would have a baby right now.  But I am trying to steer far away from the past and instead focus on the present.  What now?

There is a perceived notion that when you struggle with infertility and then have a baby, you are done being infertile.  Though that may be true for some people, it was not true for me and my husband.  Many of our friends and family members wanted us to ride off into the sunset and never look back.  They often said they just wanted us to be happy.  But my husband and I wanted more children.  I remember, after my third consecutive miscarriage, sharing the news with a close family member, who responded; “Don’t be sad. Look at your beautiful daughter and just be grateful that you have her.”  I can only imagine her own grief over what my husband and I were going through led to her dismissive remark.  Maybe she told me what helped her make sense of our sad news.  I wasn’t crying on the phone to her.  I wasn’t angry. Not in that conversation, and not ever in my journey, have I uttered that what was happening to me was not fair.  I have worked in homes for the dying in Calcutta and have worked with families in Mexico who had no clean water to drink.  Those situations are not fair. What is also not fair is that so many people I love and have grown to cherish in the infertility community do not have their one miracle to hold and love.  

But for a person to tell me to be grateful for the gift of my daughter is like telling my heart to beat.  Of course I am grateful for my daughter!  My gratitude is heightened by knowing how much the odds were against her coming into this world.  Infertility is like wearing a permanent pair of sunglasses.  It colors your entire world, including the way you parent. The love and the depth of gratitude I feel for my child is a richer, more vibrant shade, fashioned by the years of desiring her presence in our lives and by the long journey that got her to us.  My infertility also causes my gratitude for my daughter to be mixed with a grief over my miscarriages and unviable embryos.  Infertility teaches us all that anything can, and most often will, go wrong, that loss is a part of life, and that life doesn’t work out as we hope or plan. These darker hues are ever-present and constantly haunt the thoughts that occupy my mind. My husband tells me that infertility is something that will be with us always.  I think he is right.

So the question still remains, “What now?”  Where do I go from here?  These last few months I have been taking a look at the things in my life that define me.  I am a grateful mother to my daughter.  I am a wife, married 11 years.  I am a social worker who has helped people through therapy and advocacy.  And I have been a campus minister at the high school and college level.  I am an infertility survivor and endometriosis patient who is constantly trying to make more sense of this awful, chronic disease. 

Lately I have been thinking about expanding my role as an advocate in the infertility world and starting groups for women going through infertility treatments.  I have recently started a retreat program for women struggling with infertility.  All my efforts make some of my family members a little nervous.  They view it as my being stuck or wallowing in my infertility struggles.  Maybe they are afraid I am missing my chance at that beautiful ride into the sunset?  Paulo Coehlo, one of my favorite authors, writes “Don’t allow your wounds to transform you into something you are not.”  I believe in my heart that my desire to continue to be a part of the infertility community is not dwelling in my past or transforming me in a negative way.  My hope is that my wounds will help me transform the lives of others struggling with infertility, which in turn will help me heal.  I have always been an advocate.  I have always looked to help others who are struggling.  Now that I am no longer undergoing fertility treatments, I feel that I can be a light for others and help them navigate their own path through infertility.

So I am joining the movement staying a part of the movement.  I hope to use my skills and experience to make a difference in the lives of other women who are struggling with what I have struggled with.  I am excited for the opportunity to go to Washington D.C. in May, as part of an effort organized by RESOLVE, the National Infertility Association, to speak with elected officials on many infertility issues.  I am especially looking forward to meeting many of the strong, amazing women in the infertility community that I have come in contact with over the years, many of whom are still fighting hard for their miracle.

I will never forget the pain and hopelessness that I felt before I had my daughter and the feelings of loss that I still feel after the realization that after five additional years of unsuccessful fertility treatments, I will never have another biological child.  I will never take my daughter's life for granted.  I will never take lightly the pain of others, especially those who are struggling to have their first child.  I will never stop educating others about infertility.  I will never stop fighting for answers.  I have learned through my journey with infertility that I will never be the same, but hopefully, in my new reality, I can bring hope and comfort to others.

To find our more about RESOLVE and Advocacy Day check out:

http://www.resolve.org/infertility101

http://www.resolve.org/national-infertility-awareness-week/about.html

 

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 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.