Casey Berna

Casey is a licensed social worker with many years of experience in the non-profit sector as a counselor, advocate and community organizer. Casey does therapy with endometriosis and infertility patients from her offices in NYC and White Plains. She also sees patients globally through Skype sessions.  She runs patient support groups through her affiliations with RESOLVE and EndoWarriors.  For years, Casey has been a presence in the infertility and endometriosis  community as a writer and activist, using her own struggle with endometriosis and recurrent pregnancy loss to help others. To contact Casey email: CaseyBerna@gmail.com

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 Also if you are an infertility and/or endo patient please check out my documentary which I hope will make you feel less alone.

  • Apr 17, 15

    Endometriosis and Infertility each can be devastating in their own right. But, experiencing both at once,  often leaves patients to suffer for years through misdiagnosis and mistreatment from the medical community. By the time patients get the help they need, often their fertility has been compromised and their feelings of anxiety and depression are overwhelming.

    I reached out to the endometriosis community and asked patients to come and meet up to speak about their experiences with the disease. What came from this was 8 hours of footage of patients bravely talking about their unbelievable journeys with endometriosis and infertility. Their stories were heartbreaking, yet their spirits unbreakable. They spoke from their hearts and from their souls. They talked about how devastating the disease has been and the impact it has had on their mental health. They talked about what gets them through the day and what gives them hope, despite their pain.

    I am incredibly grateful to these brave souls who came and testified. I know their stories will help others. Many MANY thanks to Dr. Sallie Sarrel , Jen Rutner , April  , Amanda , Marin , Lauren Tait, Lauren, Colleen, Chelsea Kern and Joe Faller, our needed male perspective, for your time and for sharing your story.

    I have never been more proud of a project. I feel this represents so much of what I cover in my daily work counseling patients worldwide and through my group work through RESOLVE and EndoWarriors. The more we talk about these issues, the less patients will feel all alone.

    You are not alone. We are all in this together.
     
     
     
     
  • Apr 12, 15

    It was such an honor to talk to endometriosis patients about the affects of endo and infertility at the Endometriosis Foundation of America Patient Awareness Day. For those of you that couldn't be there here is my talk!

    Endometriosis and Infertility


    Intro: Hi there, my name is Casey Berna. I am an endometriosis patient myself; I have had two excision surgeries with Dr. Seckin and four endo related surgeries before I found him.  I am also an infertility and recurrent pregnancy loss survivor.  I am a social worker and I do therapy with endometriosis and infertility patients and I also run monthly support groups through Endowarriors and resolve.


     


    Important Things to know about Endometriosis and Infertility


    1)      This is hard and you are all superwoman. Having endometriosis, a chronic, painful disease is INCREDIBLY difficult. Navigating infertility is a devastating struggle. When you put these two things together, it creates a physical and emotional crisis that is not really recognized by most doctors, co-workers, family, friends and society in general. Handling one of these things is exhausting and all consuming, handling both at once takes superhuman powers, which in my professional experience, most endometriosis patients seem to possess.


    2)      Be gentle with yourself, take care of yourself. Just because you have superhuman powers doesn’t mean you have to use them all the time. Feel free to say no to moving your brother into his new home, skip Cousin Susie’s baby shower or opt out of visiting your friend in the hospital who just had her third baby. I give you permission, no I demand you to protect your heart, body and your spirit during this time of crisis.  When you can remove any toxic people or situations in your life that suck all of your energy and bring you more stress.  I have one patient who calls her mom right before her transfers and tells her she can’t talk to her for a week. During this time, I feel like many of us are just doggie paddling through life, you don’t need someone or something to pull your head below water if you can avoid it.


    3)      Be aware of the emotional impact endo and Infertility. Many patients struggle with anxiety and depression. Endo causes fatigue, pain and the diagnosis and treatment of the disease is not simple. Patients undergoing infertility treatments, seeking out third party reproduction or going through the adoption process, often have hope, but their struggle is real and they often feel a lack of control and uncertainty. There are real stressors, financial emotional and physical often associated.  These experiences can be isolating.  Getting involved in the endo and infertility communities changed my life. Connecting with other women online who are going through similar things or attending a local RESOLVE support group can truly help. Get connected. And parts of endometriosis and infertility are downright traumatic. If you feel like you are drowning, reach out; find a good therapist who understands endo and infertility. It will help so much.


    4)      Be your own advocate. I have worked with so many patients who, even at the top clinics, have had their endometriosis dismissed or ignored when seeking fertility treatments. Listen to that little voice inside of you when it says that something doesn’t seem right or feel right.  Listen to your body. Educate yourself. Go online. That right I am ENCOURAGING YOU TO GOOGLE. Ask questions in the reliable forums. Read the articles posted on the endometriosis specialists sites regarding infertility.  If your dr. dismisses your questions or the information from specialists or dismisses the role endometriosis can play in infertility, find a new doctor. This is your body. Believe in yourself. Remember you are superwoman.  


    5)      Keep faith in yourself. Family building is a stressful and invasive process, it is so intense. Endometriosis can also be an intense, invasive and relentless disease. So many patients come to me saying they feel broken, broken on both a physical and psychological level. There is so much uncertainty, fear and sadness that come with all of this. One of my endo patients, a staple in my RESOLVE group, is an incredible support to others, her warmth and smile light up the room.  She texted me the other day to say her latest IUI failed, and after a very long road, she only has one more left to try. She is losing faith. After cursing the universe for her, I told her that I have no idea how this is all going to come out in the end but that I have faith in her as a person, faith in her beautiful relationship with her partner, and faith that no matter what comes, she will be able to find the strength and tools to figure out her path.This process can make us lose ourselves. But the truth is each one of us is incredible individuals with gifts and strengths. Even though you may not feel it at times, you are more than your endo and you are more than your fertility capabilities.

  • Mar 23, 15

    Are YOU Excited? Because WE are SUPER Excited!!

    Are you coming to the Today Show Plaza this Saturday March 28th for Endometriosis Awareness?
        Here are some last minute details to keep in mind!
    1)      Have you registered? If not register here. Don’t forget to tell Today that you are here for Endometriosis Awareness. If you or a loved one do not register beforehand, NO WORRIES, you can register that day on the plaza.


    2)      Have you made your poster yet?  My poster is shown above! This is the poster that the wonderful interns at the EFA made. 
    Make your poster catchy and bright! You also will be able to make posters at the PLAZA, they will have paper and markers.  Have your loved ones make posters that say catchy things & tell a story like, “My Aunt Katie rocks Endo.” or “All the way from Canada for Endometriosis Awareness.”  “Jersey Girls Fight Endo.”  “My best friend fights endo.”



    3)      Yellow! Yellow! Yellow! Be fun and creative! Wear a yellow shirt or scarf. Come with a yellow hat or funny yellow glasses. We are looking to grab the attention of the Today Show. They are into fun, passionate and energetic crowds. Dollar stores have great yellow merchandise.


    4)      I am getting to the Plaza around 6am to line up. You can line up at the corner of 48th street and Rockefeller Plaza. I am encouraging all of those who want to be seen to get there early. It is a first come first serve attitude when it comes to getting your spot. They will let the crowd in just before 630.  I am requesting that we leave room for some organizations in the front row so that they have a better chance to be interviewed about their work.

    5)      Logistics: You can bring a knapsack into the plaza, it will just have to be searched by security. Food, drinks and snacks can be brought in. You can bring cameras and cell phones. Dress comfortably AND WARMLY, there is a lot of waiting around and hanging out. If you need to take a break, you can leave and come back.  Next store, 30 Rockefeller Plaza,  has a downstairs public space which has a Starbucks, lots of other dining options and public seating. If you need a break, you can go there and hang out. After the Today Show, I encourage all patients to go there to hang out for a little bit and be together.


    6)      Weather: So far, the weather looks like it is going to be good. But keep checking the weather and get a yellow poncho or umbrella in case of rain. We will be there rain or shine.
     


    7)      If you have any questions please contact me, caseyberna@gmail.com . Thank you for participating. Our main goal is to have the word endometriosis said on the Today Show on March 28th.  Obviously, it is a little discouraging that none of the major news networks have done a segment on endometriosis, a disease that effects 1 out of every 10 women and that takes 10 years of suffering on average for a women to get diagnosed. So if they won’t come to us we ARE COMING TO THEM!!!!!!!

    

  • Feb 28, 15
    Hello valued endometriosis community members! I am putting together three separate videos for Endometriosis and Infertility Awareness. Two of the videos will explore the effects that endometriosis and/or infertility have on mental health. One of the videos is entitled “think endometriosis” and will talk about the effects that misdiagnosis and mistreatment have on the patient, the quality of life and their fertility.



    These videos are for education purposes and also to help other patient feel less alone. Infertility and endometriosis have a profound impact on mental health.  Anxiety and depression are a common side effect of struggling with these diseases. Yet, it is not often talked about or it is ignored. Trauma and grief are also a big part of the lives of women suffering from these illnesses, yet women don’t always know they are experiencing these things.  It is time to shed some light on these issues to help patients understand what they are feeling. Mental health care providers need to be sensitive and aware of these patient needs so that they are not dismissive. Doctors need to not only treat the physical needs of each patient but ask the patient how their emotional health is and give them resources for extra support.


    My “Think Endometriosis” video is directly aimed at educating the medical community at large. So often the patient’s journey to seeing an excision specialist is a harrowing one filled with well meaning, but uneducated doctors that do more harm than good. I first started going to a gastroenterologist at the age or 19. Had he diagnosed me, I would have had far less surgeries, far less pain and would have made better choices regarding my fertility. I have talked with women who have gone to the top reproductive endocrinologists that this country has to offer and yet their advanced endometriosis was missed and their treatments unsuccessful and written off as unexplained.


    It’s time to bring these horror stories to the forefront in hopes that doctors educate themselves and change the way they treat endometriosis patients and think about endometriosis. Most often women do not have the energy to confront the doctors that are not giving them the treatment that they need or those who have mistreated them. They simply move on to someone who can help them and not look back.  Hopefully sharing these stories will help patients who suspect endometriosis not have to go through the cycle of trauma that other patients have endured before them. Maybe even well meaning doctors who may see this video will change their ways.



    When: Saturday March 7th from 10am -2 pm . I will have brunch available in the conference room for patients to socialize and will assign half an hour increments where I will take each patient into another room and record them.


    Where: Maria Droste Counseling Services 33rd and Madison http://mdcsnyc.org/


    What: I will ask patients a series of questions regarding their journey to diagnosis. I will ask patients to open up about the emotional toll endometriosis/infertility has taken on their lives, their relationships, the way they view themselves and their overall mental health.


    I am going to post the video on my youtube channel and share over social media. I will also present it at a lecture I am doing at Fairfield University.


    If you are able to attend or have any questions, please send me an email caseyberna@gmail.com.  I may be able to also do some skype interviews. I am working on that possibility.

  • Mar 03, 15


     
    March is Endometriosis Awareness Month! Why is awareness so important? Endometriosis is a horrible, invasive and painful disease. Unfortunately, not many people know about endometriosis or “think endometriosis”.

    This lack of awareness is pervasive, effecting the medical community, family, friends, employers and society at large. This lack of awareness and understanding only further devastates patients that are already suffering. Doctors fail to diagnose patients in a timely manner and often use treatments that further harm the patient instead of help. Employers do not understand when patients need time off. Family and friends sometimes do not understand the disease and fail to support patients in meaningful ways. Society as a whole does not understand or take endometriosis seriously. Yet, this disease has a serious, profound impact on the life of a patient. 



    Turning your facebook page yellow may seem simple and maybe even silly, but it will help start a conversation with those you are connected with. Sharing your journey with endometriosis, or the journey of someone you love on social media or in your community, can help someone else get diagnosed, get proper treatment or feel less alone.  Participating in organized events near you helps create a larger impact. The more voices that join together the louder we can be heard. It is time to end the silence.


    Here are some ways to participate. If you have any questions, feel free to email me caseyberna@gmail.com.


    Events You Can Do From Your Living Room


    1)      Turn Facebook Yellow for Endometriosis : Really simple, for the month of march let’s have facebook turn yellow! Ask all of your family and friends to do it too.  http://www.endochallenge.com/

     
    2)   Thursday, Mar 5, 630pm EST  http://on.fb.me/1CdcZDC Let's Talk about Endometriosis! Join Dr Sinervo from the esteemed Center for Endometriosis Care in Atlanta and The Endo Challenge  Details and RSVP at link - http://on.fb.me/1CdcZDC

    3) Participate in Knock Out Endo’s powerful social media campaign by joining their facebook page and share why you pledge to Knock Out Endo… https://www.facebook.com/Knockoutendo

    4) Are you on Instagram? Follow Endometriosis Advocate EndoHappy this month and take her Awareness Month Photo Challenge!
     

    5) Advocate Ask Me About My Endo is encouraging folks to take pictures of Ruby the Endo Roo out and about to raise awareness and qualify for prizes.
     
     
    6)      Donate Money to help Endometriosis Patients or Endometriosis Non-profits. There are awesome non-profits who are campaigning this month who would appreciate your support. I am focusing on helping two specific patients in need.  An endometriosis patient and a dear friend of mine, a military spouse, has emptied her life savings to fight to keep her forever family together and is now in desperate need of excision surgery.  If a certain amount of money is raised, I get a pie in my face! Win-win! http://www.gofundme.com/pieface4family 


    In addition, a personal patient of mine is about to be homeless, is a single mother and has severe endometriosis and adenomyosis. She needs help getting on her feet again and quickly. If you are interested in helping her please email me at caseyberna@gmail.com
     
    Global Events


    1)      On March 28th, communities across theglobe will be working in conjunction with Worldwide EndoMarch to participate in awareness events. Check out their website to see what is going on in your community. EndoMarch is organizing two main events this year in Palo Alto California and Washington D.C. To register for these events and get more information at http://www.endomarch.org/  If you plan on attending the D.C. event make sure to go to the social event the night before run by some of my favorite leaders in the community: http://www.eventbrite.com/e/endosocial-2015-tickets-15783198973
     I had so much fun in D.C. last year. I made a video of the experience!
     
     
    2) Endometriosis.Org has put together an extensive list of endometriosis events happening around the globe. Go to http://endometriosis.org/news/support-awareness/endometriosis-awareness-2015/ to check it out!
     

    New York City Events


    1)      On Saturday March 7th, from 900am-3pm, I will be interviewing patients at Maria Droste Counseling Services to be put in a series of awareness videos. I will be lecturing at Fairfield University regarding the impact infertility and/or endometriosis has on mental health and I am looking for women to come and share their stories to present to the class.  I am also formulating a video called “think endometriosis” highlighting the medical mismanagement so many patients get and the devastating it effects it has.  If you can make it email me caseyberna@gmail.com


    2)      Come hear expert endometriosis excision surgeon Dr. Seckin and celebrity and women's advocate Padma Lakshmi, co-founders of the Endometriosis Foundation of America, speak about endometriosis on March 10th. http://www.92y.org/Event/Endometriosis.aspx


     

    4)      On Saturday March 28th, EndoMarch in conjunction with the EFA, are encouraging endometriosis patients and their supporters to storm the Today Show Plaza to make some noise and get some attention for this silent disease. Sign up here: http://www.chancesour.blogspot.com/2015/01/participate-in-endomarch-through-ny.html
     If you do not have anything yellow to wear to the Plaza, buy one of these cute t-shirts here and in doing so your donation will support the amazing programs the EFA leads in educating young people and supporting patients.  

     

    5)      From April 10-12 the EFA will be holding its annual Medical Conference and Patient Day.  Urge your doctors to attend the medical conference to hear the best experts come and discuss the disease. Come to the EFA’s free patient day to get invaluable resources and the latest information regarding endometriosis. Make sure to plan to come out afterwards for a drink with fellow attendees!  


    6)      Sometime in the fall I will be hosting an endometriosis retreat! If you are interested in more information and would like to be put on the mailing list, email me at caseyberna@gmail.com
    Hooray for Endometriosis Awareness! Looking forward to seeing some of you at these events and seeing all the yellow awareness spread across the globe to honor our stories and our experiences!
  • Mar 01, 15
     


    Are you super excited about promoting Endometriosis Awareness in the Tri-State Area? Did you want to participate in EndoMarch but can't make it to California or DC this year? Do you like wearing yellow and are free on March 28th?

    If you answered yes to any of these questions, then you are in luck because on Saturday March 28th endometriosis patients and their supporters are flooding the Today Show Plaza in their best yellow gear to make some noise for endometriosis awareness.

    The Details

    What: Storming the Today Show Plaza in conjunction with EndoMarch and the Endometriosis Foundation of America to raise some awareness for Endometriosis.

    Who: Anyone and everyone are welcome. We want a huge crowd in yellow to make quite an impact. The more people that sign up in advance, the better chance they might be able to do a segment about the disease and raise even more awareness.

    When: Saturday March 28th in the morning. Today recommends showing up by 6am and they film 7am through 10am.

    Where:The TODAY plaza is located in Rockefeller Center between 48th and 49th streets and 5th Ave. and the Avenue of the Americas (6th Ave.). https://www.google.com/maps/preview#!q=The+Today+Show%2C+New+York%2C+NY&data=!4m15!2m14!1m13!1s0x89c258ff308b962b%3A0x8c78f178e4a5e9d2!3m8!1m3!1d227878!2d-73.979681!3d40.697488!3m2!1i1315!2i452!4f13.1!4m2!3d40.758293!4d-73.978925

    How:
    Step One: Register here is advance: http://visit.today.com/ Put your date as March 28th. Make sure you put you are part of a large group. When it asks for more information write, "Filling the plaza with Yellow for Endometriosis Awareness. I will be coming as a part of the Global EndoMarch." Also feel free to share a brief personal story. You never know, they may ask you to be interviewed!  When choosing a picture, if you have one of you in yellow, or you post op, feel free to post it. I used this picture.


    Step Two: Ask a friend, family member or two to go with you and have them register ASAP.

    Step Three: Share on social media that you are coming.
    Facebook: Share this blog with friends and family on facebook. Invite them to join.
                      Like https://www.facebook.com/todayhealth on Facebook and message them
                             and tell them "I am coming to the TODAY show on March 28th in solidarity with     
                           EndoMarch to promote endometriosis awareness because.....Please shed light on our  
                           disease!"
    Twitter: Tweet this out if you are on twitter: Hi  get ready 4 ladies in yellow storming the plaza on 3/28 for Endometriosis Awareness   
    For more tips and information go to these Today Show Sites:
     http://www.today.com/allday/visit-today-plaza-what-you-need-know-6C10518085
    http://visit.today.com/plan-your-trip/
       When you sign up make sure to tweet me, leave a comment for me on this post or let me know on my facebook page https://www.facebook.com/CaseyBernaMSW
       
                                                              Time to end the silence ladies!
    Check out my EndoMarch Awareness videos here to get pumped:
    https://www.youtube.com/watch?v=KSc4j7KzOis
    https://www.youtube.com/watch?v=lw2DuJweCZU
    This is a Patient Video that Worldwide EndoMarch put together last year. My mom and myself are included! http://youtu.be/HewURbuVR0s
    Make sure to check out the EndoMarch Website to see all the amazing worldwide events happening.
    Need something yellow to wear? Support the incredible awareness projects of the EFA and buy one of these awesome t-shirts to wear on the plaza that day!
  • Dec 30, 14
    Can't we all learn to get along?

    A usual tweet from a member of the infertility community looks like this, “Surprise natural pregnancy announcement on fb, ON Christmas, ultrasound included—ARG.” Then the community would rally and say things like, “Blerg,” “HUGS,”  “Sending love and strength,” or “Sending wine.” There would be virtual eye rolls and immediate empathy and compassion given to whoever was faced with the post on an already difficult day. For that person still in the trenches, for that person whose pain is fresh and deep, we all would support them and say, “I am sorry you are hurting. I am sorry you had to face this today on top of everything else.”

    But the person who posted the ultrasound was Jay @thetwoweekwait. Jay is a beloved pillar of our community and a compassionate advocate. She works tirelessly to improve the lives of those struggling. She struggled to have her son. Against most odds and without mindfully trying, she is pregnant. She is also terrified. She is older. She is worried. She is excited. She is grateful.  She is conflicted and has survivor’s guilt.  Her husband posted the ultrasound picture on facebook, on Christmas, with zeal and gratitude. Jay allowed it on her timeline. 

    Some still in the trenches saw the post and it hurt them.  I know this because I had many unsolicited private facebook messages about it and I tried to soothe the hurting feelings. Jay came to twitter to announce her pregnancy and apologize for the hurt she may have caused by announcing it. The announcement meant a lot to her husband. He wanted the ultrasound to be posted on Christmas. Advocates who have been a part of the twitter infertility community for a long time criticized Jay for allowing the ultrasound picture posted to her timeline on Christmas. Although excited for her on a personal level, from a professional perspective, they felt disappointed in Jay as an advocate. Christmas Day is hard and ultrasound pictures are notorious triggers for the infertile and for those who have suffered loss. There were other mean and hateful things said to Jay by unreasonable, horrible people whose motives could only be adding more negativity to the universe. I won’t even address these people, because they are unreasonable, illogical and hateful.  They deserve an immediate block/unfollow.

    What I also found hateful though, was some of the messages from members of our own community in Jay’s defense. There is a lot of talk about how the infertility community on twitter isn’t a “safe space” anymore. It sure wasn’t safe the other day. I have always seen the infertility twitter community as an extended virtual support group.  In an infertility support group, you wouldn’t bring pictures of your babies unless you were specifically in a support group that addresses secondary infertility. In an infertility support group, you wouldn’t talk about pregnancy or breast feeding. In an infertility support group, you wouldn’t talk about how hard parenting is. For the most part, you aren’t true friends with people in your support group. You are tied to them by a shared experience of pain or loss. Sometimes true friendships form and blossom, but that is the exception, not the rule.

    When I run my monthly RESOLVE group, my members come in and bring their pain and heartache. When they talk about how hard it is to see other women get pregnant, even other women who were once a part of the group, I don’t say to them, “Listen, if you can’t be happy for her, fuck you.” I don’t say to them, “Hater’s going to hate, stop being a hater.”  I don’t say to them, “I mean she deserved to get pregnant, so be happy for her.”  I don’t say to them, “You are being a fair weather friend, you love her more when she is struggling? Well, fuck you. ” Or “Stop being a bitch about it or I will show you another ultrasound picture.” I don’t tell them to, “Get OVER it and yourself.” I don’t dismiss them by saying, “Stop spreading your fucking misery and be happy for her. This isn’t about you and your pain.” Lastly, I would not lecture by saying, “I mean come on, can’t you for a second think of how much support this person who just got pregnant naturally needs?”

    Now, I am supporting Jay 100%. Jay is my friend. I know she needs support right now. I am in a place where I can give her support.  I think many people also adore Jay and feel protective of her. My instinct when all of the drama went down was to wrap her in a cocoon of love and protect her and her family. I know she would do the same for me. But I don’t think it is fair to criticize those who could not be supportive because they are in pain. All of the quotes above are taken directly or paraphrased from members of the community during this latest twitter war. We MAY NOT say these things to one another. This is a therapeutic community.  I don’t think it is fair to criticize long time advocates who challenged Jay’s timing and the way she shared. Because if they got some of the private messages that I got, they wanted to protect their struggling friends in a cocoon of love.  Jay is an advocate.  As an advocate myself, I often find the lines of our personal and professional lives blur at times. It can be messy and confusing. We are making up a lot of these rules as we go and we are learning how to balance these things daily. Jay ultimately made a choice that was best for her family, a decision that was understandably challenged by some in the community.   If the headline simply read “Woman gets grief from infertility community for posting ultrasound picture on facebook on Christmas,” this would not even be news.  Jay will continue to do excellent work for our community. I am sure she has all the support she needs on line and off line. She has taken a needed break from twitter to take care of her physical and mental wellbeing and will hopefully come back with crazy work stories from FertilityAuthority. No ma’am, you cannot get impregnated by a unicorn even while ovulating with a good egg reserve.

    I am not so much worried about Jay, as I am worried about our community. I am not sure how we move ahead as a community. Clearly, there are people who feel that it is mean and hateful not to continue to offer support to our community members who get pregnant. I might argue it is mean and hateful to talk a lot about pregnancy in an infertility community.  There has to be a balance. You want an example of someone who does it right? Look at long time twitter community veteran @Pregnant_Pause. She is a master at being sensitive. Now I personally would like MORE pictures of her babies, but that is why I have her email address so I can harass her for them offline.  We are friends. She is wise enough to know, not everyone o twitter wants to or can see a million pictures of her babies. While I know firsthand the stress and trauma of “being pregnant and/or parenting post infertility,” I also know there needs to be a balance in talking about these issues to not upset others.  I see things in my feed about labor and breastfeeding and wonder why they are in my feed? I know these are quite triggering to various groups in our community, including adoptive parents or those who have late term losses.  I know those who are not parenting after struggling with years of infertility do not even feel like they have a voice at all.
    I don’t like the attitude, “Well, if they don’t like what you are saying, they should just unfollow you.”  I think there is room for all of us in this community. Only growth can come from hearing each other’s stories and holding each other’s pain. We need to be aware and sensitive to triggers. Some of those who have been around here a long time have been encouraging others to be especially gentle with those who are hurting most.  If you feel you can’t do that without compromising yourself, if creating a safe space for those in the trenches isn’t your first priority on twitter, then just be honest about it and put it in your profile. Feel free to put up, “I worked my ass off to get pregnant/have a baby/adopt and if people have an issue with me talking about it or can’t be happy for me, don’t follow me.”  I think it would be an effective way for others to know where you stand. But certainly if you are choosing to be a part of our community still, do NOT curse out those who are down and out. Don’t make them feel bad about their feelings of envy, anger or pain in what is supposed to be a “safe space” dedicated to infertility.  


  • Aug 03, 14

     
    Whether is for a diagnostic colonoscopy or to prepare for excision surgery, many endometriosis patients have to endure the dreaded bowel prep.  For some patients who have not experienced “bowel prepping,” it can seem like an extremely intimidating task.  Patients that have endured bowel prepping multiple times know it is more of an unpleasant inconvenience as opposed to the end of the world. Listed below are tips that can help make the bowel prep experience more tolerable and less daunting.


    1.       Eat lightly sooner than later. It is never too early in the week to start thinking about your upcoming bowel prep. The saying, “What goes in, must come out!” certainly applies in this case. There has been many a patient regret over having a large Mexican feast as the last meal the night before bowel prep festivities begin! A decadent meal might be better had a week before your procedure rather than the day before!  A few days before the bowel prep, it is smart to start eating lighter and healthier than usual. Most importantly, start hydrating your body by drinking a lot of water.  The actual prep will go so much smoother if you are completely hydrated.


    2.       J-E-L-L-O.  What is your favorite kind of Jello? What broths or teas suit your fancy? Do you have a favorite Gatorade flavor? These are the questions you need to be asking yourself the week before your bowel prep. Make sure to get to the grocery store and have everything in place for fasting day. Make your Jello the night before so it can set. The day before the actual procedure, patients are usually allowed a very light breakfast and then encouraged to stick to clear foods and liquids for the rest of the day.  Some patients opt to skip the light breakfast and have their last light meal the night before the prepping starts. Some doctors discourage eating or drinking items that are red or purple. Some patients have found that mixing their bowel prep with lemonade or Gatorade can help make the often gross taste that it has seem less pungent. Again, Keep drinking water!  Also, make sure not to eat or drink after midnight to prepare for the procedure the next day.


    3.       Get clear directions from your doctor.  Dr. Seckin gives his patients clear pre-operative directions which includes the directions for bowel prep. If your doctors’ directions aren’t as clear, it is important to read the directions in advance of the bowel prep and ask any questions or concerns that come to mind. One question I always encourage patients to ask their doctor is, “If the assigned bowel prep isn’t working after a multiple hours, what should I do?”  Some doctors will encourage you to take another dose of the bowel prep, but it is good to know that ahead of time instead of having to call their service panicked after hours.  Some women also battle severe nausea and cannot get all of the bowel prep down. Ask your doctor what you should do if you happen to throw up some of the bowl prep.  


    4.       Get where you need to go. Although every patient is different, in general, most patients spend a good amount of time in the bathroom or waiting around on the couch close to a bathroom, after drinking the prep. Even though it may take some time for the prep to kick in, it is wise to get where you will be for the night before taking it. Also, if you have small children, it may be wise to ask for help taking care of them once the prep is in full effect.  If you have a dog that needs to be walked at a certain time, ask someone to come over and help you.


    5.       Little Luxuries can make a difference.  Some recommended items to buy to make the experience a little more pleasant is:  nice hand soap, a candle for the bathroom, a fun magazine or reading material for the evening, flushable wet wipes, movie rentals. Also, make sure you have enough toilet paper for the evening. It is not the time to run out!


    Some patients experience uncomfortable cramping during the bowel prep. Check with your doctor before you take any medicine to ease your cramps as it may not be advised. Also a heating pad and a warm bubble bath can help reduce the stress and discomfort that the bowel prep can bring. Doing a bowel prep isn’t ideal, but it is manageable and you will be okay! For a good laugh read what comedic writer Dave Barry said about his: http://www.miamiherald.com/2009/02/11/427603/dave-barry-a-journey-into-my-colon.html
  • May 16, 14
    I always get incredibly emotional around Mother’s Day. For so many years, as I battled infertility, that day would bring me more sadness than joy. It seemed like everyone around me was easily getting pregnant as I became more deeply entrenched in fertility treatments. Life was so uncertain. I didn’t know if being a parent was in my future. 



     

    I vividly remember my first diagnostic laparoscopic surgery for endometriosis. I was terrified that something would happen to me, leaving my husband all alone in the world. I was terrified that the doctor would not find endometriosis but would instead tell me that the pain and the suffering that I had been experiencing all these years were in my head. I was terrified that even after surgery I would still not be able to get pregnant and the surgery would be all for nothing.



     

    Later that day, after I had recovered from my surgery, the hospital aid pushed my wheel chair through the halls toward the exit as my husband walked beside me. Trying to make conversation, the aid asked, “Oh do you have any kids at home?” The question stung and tears started rolling down my eyes. “No,” I replied sadly. “Well that’s good” she said, “They would be jumping all over you and hugging you. At least you can go home and rest.”  I remember thinking that I would give anything for that problem!



     

    I was so lucky to be able to eventually get pregnant after my surgery, through the help of fertility treatments. But, in the last six years since my daughter was born, I have endured four miscarriages, countless more fertility treatments, a laparoscopic cholycystectomy and, after years of suffering, finally two excision surgeries with Dr. Seckin, co-founder of the Endometriosis Foundation of America,  that have brought back my quality of life. Dr. Seckin and his team of surgeons removed endometriosis from my entire pelvic area including my colon, rectum, bladder, and ureters. During my last excision surgery this past fall, Dr. Seckin even removed endometriosis-related scar tissue from my diaphragm. 



     

    Even when my family building attempts were long over (I was never able to get pregnant again due to a genetic defect with my eggs) --the challenges of living with endometriosis while raising a child lingered on, proving that endometriosis is not just a reproductive health issue, but a quality of life issue. Often left unspoken are the challenges of parenting while suffering from a debilitating chronic illness like endometriosis.



     

    Parenting with endometriosis can be incredibly difficult and at times heart breaking. Like other babies of endometriosis patients, my daughter was born 6 weeks premature via c-section. Every day she spent in the NICU I blamed my body for failing her. Since my daughter was born, I have endured three surgeries. Before each surgery, just as the anesthesia was about to take me away, I thought of my daughter and pleaded with the universe to allow me to wake up and be able to be a capable parent to her. When she was smaller, it was very hard for her to understand why I couldn’t pick her up, play with her and be with her as I struggled to recover. I remember how my husband and I prematurely put her in a toddler bed right before my first excision surgery, in order to make life easier for me post-op. I thankfully had supportive family and friends who helped me and my husband take care of our daughter in this time of need.  My heart goes out to all of those moms who are not so fortunate.



     

    Before my excision surgeries, my periods were so horrendous that I couldn’t take care of my daughter on Day 1 or 2 of my cycle. I would wake up in excruciating pain, swollen beyond belief and bleeding heavily, and I would have to scramble to find help for the day. I would beg my husband to work from home or ask my parents if they could help out. I can remember my sister-in-law calling to invite my daughter to my nephew’s birthday party. I was embarrassed as I told her I couldn’t leave the house because I was in so much pain due to my period. Leaving the house seemed like an impossible task.



     

    Infertility and endometriosis have made me more hesitant to make new friends and agree to events or playdates. It was so hard to explain to other people what my husband and I were going through. I isolated myself and in turn isolated my daughter. I feel like for much of her life my husband and I have been in crisis, all due to my health issues. I worry how that has impacted her. 



     

    It is hard to try not to focus on all of the things my endometriosis has deprived my daughter of. Since my excision surgeries, I have a great quality of life. I no longer need help during my period. My issues of leg and back pain, diarrhea and frequent urination have improved greatly. But I still battle endometriosis. I am not the most active mom. You will never see me hiking or bike riding with my daughter. I get anxious going for long walks without a bathroom nearby. My daughter asked me the other day, “Mom, why are you always so tired?” Although I have been told that my daughter has more energy than most kids, I feel badly that I constantly struggle to give her the energy she needs. Oh, and the hormonally induced mood swings! I have resorted to marking on the calendar the days in my cycle when I am super impatient and grumpy. I always make sure to explain to my daughter, “Mommy’s feeling really grumpy today. I am sorry if I lose my patience with you.” Or lately I have said “Mommy’s super tired today.” My daughter also gets frustrated with my “endobrain” and my tendencies to be forgetful or distant at times. 


     

    There are greater, more profound things that weigh on my mind. I have not been able to give my daughter a sibling, something that causes my husband and me great sadness. I also worry about passing on endometriosis to my daughter. This disease is something my mother and my aunts have struggled with. The fact that one day my daughter will have to battle this horrendous disease is unthinkable. 



     

    These are heavy burdens I carry in my heart but are completely out of my control. Moms can be really good at feeling guilty and are notoriously hard on themselves. I am no exception. I often wonder what my life would be like without the burden of endometriosis. What does it feel like to not be fighting against your body all the time? What would I be able to accomplish if the veil of fatigue were lifted? How much more could I give of myself to my daughter if I weren't battling this disease? 



     

    At the end of the day, my overwhelming gratitude overrides my guilt. I know I am so lucky to have my daughter. I try to think of the positives that have come from this disease. Meeting and working with other incredible patients on a daily basis, who struggle like I struggle, is one of those positive things. This disease has also given me a perspective on life that I think others may not have. I know I am doing my best, and that has to be good enough. My shortcomings do not define me, but they do make me stronger. Because I struggle, I have more compassion for others who are struggling. If I can impart this wisdom on my daughter, I know it will help her in the future to face whatever may come her way.


  • Apr 25, 14
    My Community! Survivors of all things endometriosis, infertility, RPL related!
    Incredible, strong women at RESOLVE Advocacy Day.

    My need for support and companionship during my struggle with infertility and endometriosis led me to join the online patient community. Through my involvement in this community, I have met some of the strongest, most inspiring women. Some of them have become my closest friends and confidants.  A good many of them started struggling with infertility in their 20’s. Years passed as they tried many treatments and suffered miscarriages. Some of them did receive an endometriosis diagnosis sooner than later. But what is most astonishing is some of them are just starting to get their endometriosis diagnosis, years after they have moved on from infertility treatments.  The majority of these friends are now parenting through adoption or are in the process of adopting.  Some of them are choosing to use an egg donor or end their family building journey altogether. They have worked to find peace in their decision.  But in some of these cases, I can’t but help feel their doctors failed them, like mine failed me for so many years. 
    The Endometriosis Foundation of America states that “Approximately 176 million women and girls worldwide suffer from endometriosis; 8.5 million in North America alone.” RESOLVE, the National Infertility Association, reports that “40% of women with endometriosis will struggle with infertility” and “In about 30% of women, there are no symptoms except infertility.” The truth is, on average, it takes ten years of a woman shuffling around to different doctors for her to get an endometriosis diagnosis. It took me ten years and I have obvious symptoms of endometriosis, such as painful periods, infertility and chronic digestive and urinary issues. How about women who do not have the obvious symptoms? What about women with unexplained recurrent losses, low ovarian reserve or poor egg quality? Many of these women have “silent endometriosis.”


    Endometriosis can have a profound effect on a woman’s fertility in many different ways. Anatomically speaking, the disease can warp and encase the reproductive organs. Scar tissue and adhesions can obstruct the fallopian tubes, ovaries can adhere to a patient’s pelvic wall or attach to other organs and chocolate cysts can also form on the ovaries. All of these things can impede conceiving naturally. Endometriosis can also be found in the recto-vaginal area of a patient, making sexual intercourse extremely difficult. Also many women have a lot of pain and bloating around ovulation, which also makes the actual act of trying to conceive quite uncomfortable.


    There are many more elusive ways endometriosis can impact infertility. Dr. Jeffrey Braverman, a Reproductive Immunologist, gave a fantastic presentation about “silent endometriosis” at the last EFA Patient Seminar. He talked about how he sees patients who have been through years of infertility treatments with no success and no official diagnosis. These patients have issues ranging from never being able to conceive at all, to conceiving and suffering recurrent pregnancy losses, to having poor implantation rates in an IVF cycle. He believes this failure to conceive is due to an altered state of the patient’s immune system, which many times is linked to endometriosis. Many of his patients complain of no pelvic pain or other classic symptoms of endometriosis.  Yet, he is able to use other methods to take a clinical look at whether or not their inability to conceive is endometriosis related.

    One of the many tests Dr. Braverman performs on a patient is measuring her cytokine production.  Elevated levels of certain cytokines in a patient can indicate endometriosis. The peritoneal fluid of an endometriosis patient can be saturated with these inflammatory chemicals. This same fluid makes up the follicular fluid which encases the eggs. Cytokines can adversely affect their quality. Many endometriosis patients also find they suffer from low ovarian reserve for their age.  A recent study, sited at last year’s EFA Medical Conference by Dr. Jamie Knopman, found that women who did not have endometriosis, who used donor eggs from women with endometriosis, had a much lower rate of achieving a healthy pregnancy.



    The presence of endometriosis can also affect the patient’s tolerance to allow an embryo to thrive in her body. Dr. Braverman talked about how the embryo is seen as “foreign” to the mother’s immune system due to the male sperm component of the embryo. If the patient is using an egg or embryo donor, those components are also seen as foreign. In a healthy patient, immune privilege is given to the embryo, so the body does not reject it.  Inflammatory and autoimmune conditions, such as endometriosis, can disrupt the mother’s immune privilege, leading to the inability to conceive or achieve a healthy pregnancy.  He has also found that endometriosis has its own HLA genetic finger print. There are three common HLA haplotypes that occur with endometriosis that can be tested for.  If patients test positive for these haplotypes, it is yet another indication that endometriosis is the cause for the otherwise unexplained infertility.



    Dr. Braverman knows that when patients have no pain, there aren’t a lot of doctors who are going to diagnose them with endometriosis. Most doctors do not have the immunological understanding of the relationship between endometriosis and recurrent pregnancy loss and infertility. He has sent suspected endometriosis patients to various excision specialists in the NY area, like my surgeon and EFA co-founder Dr. Tamer Seckin, who after excision surgery, were diagnosed with Stage 4 endometriosis. Elevated FSH levels and low AMH levels as well as a family history of endometriosis can also be indicators of the disease.  Also many patients who have adenomyosis, which usually can be spotted on ultrasounds or MRI’s, often also have endometriosis as well.



    I wish every gynecologist and reproductive endocrinologist had this information. It is important that patients struggling with infertility get proper and timely care. Dr. Braverman stressed that excellent excision surgery only improves a women’s fertility. He has witnessed a significant improvement in egg quality and embryo quality once the majority of the endometriosis in the pelvic cavity is removed, which then removes the cytokine load that the ovaries are bathing in. The removal of the disease also helps with the immunological implantation issues and helps the patient develop a tolerance for the embryo. Excision surgeons routinely see patients go on to get pregnant after surgery.  Dr. Braverman also finds that many of his patients thrive with surgery coupled with immunological therapies and fertility treatments.



    This week is National Infertility Awareness Week. Endometriosis is one of the leading causes of infertility in women.  Infertility is a devastating hardship. The medical community and the endometriosis patient community need to be aware of the pervasive ways endometriosis can impede conception. Patients need to be diagnosed and treated at an earlier age to try and boost future fertility. Fertility preserving treatments such as egg freezing also need to be covered by insurance companies for endometriosis patients as well as routinely recommended by doctors.  As heartbreaking as it is to say, for me and my friends, it might be too late. But it is important for this information to get out there to help future generations of patients and to raise the standard of care for all.


    To see Dr. Braverman’s presentation on Silent Endometriosis check out this link: http://www.endofound.org//video/Jeffrey-Braverman-MD-Outsmarting-Endo/447
    A version of this post was also written for Dr. Tamer Seckin's Blog.

  • Apr 25, 14

    This article was originally posted on Everyday Health
    It is difficult to describe to the fertile world what infertility feels like and the profound and lasting impact that it has on your life.  I have been struggling with infertility for over a decade, and I work as an infertility counselor and advocate. Yet I still have trouble putting into words the pain and loss that struggling to conceive has brought to my family. A friend of mine from the infertility community described infertility perfectly in two words: soul crushing.


     
    My husband and I married in our early 20s.  For the first two years of marriage, I was on birth
    See this young bride?
    Already unknowingly pretty infertile.
    control, but we knew we eventually wanted a big family. When I was 24 I had my appendix removed, and after skipping a few birth control pills while in the hospital due to my surgery, I decided to stay off the Pill entirely. For the next two years we had no “happy accidents” and in fact my periods became quite painful.  I thought it might be time to check in with my gynecologist. I had a sinking feeling that something wasn’t right.


    My gynecologist told me it was normal to have terrible periods and painful ovulation, that I had a “low pain tolerance” and that I was overreacting. She asked to see me again in 6 months and told me not to worry, that I would be pregnant in no time. I also got a lecture on how stress and anxiety could hinder pregnancy. She told me to “just relax.”


    For the next 6 months my husband and I tried REALLY hard to get pregnant. I peed on every ovulation predictor stick I could find. I charted my basal body temperature and noted my cervical mucus. I slightly elevated my hips for at least an hour post-coitus. And of course, we made sure NOT TO STRESS OUT. I did not get pregnant, and my periods were getting worse. I went to my gynecologist’s office 6 months later and said I wanted a referral for a reproductive endocrinologist. 


    I was officially worried. What if we could never have kids? We didn’t know anyone else at the time going through infertility. My husband came from a large family, so I was sure our trouble conceiving was my fault. I felt guilty and scared. All of a sudden, something that I took for granted all this time was so uncertain. All around me friends and family members were getting pregnant, some with their second and third babies. People kept asking us casually in social situations the heart-breaking question, “So, when are you guys going to have a baby? Come on! What are you waiting for?”


    I remember sitting in the reproductive endocrinologist’s office with my husband for our first appointment. I felt physically ill. I felt like a failure for not being able to do what so many women do effortlessly. I felt alone. I felt broken. What if I couldn’t be fixed?


    To escape I read Harry Potter. At least I
    didn't have Voldemort chasing me.
    That day was the start of a new era in our life--infertility treatments and all that comes with it. My reproductive endocrinologist’s office became my home away from home.  In the span of six years I had 3 IUIs, 3 IVFs and 34 embryos tested and I suffered 4 miscarriages. I was finally diagnosed with endometriosis, which explained my painful periods along with a host of other problems that doctors could never explain.   I was also diagnosed with a balanced translocation, a genetic issue that causes the overwhelming majority of my embryos to miscarry.


    In an ideal world, making a baby is a decision between two consenting adults.  Sex is meant to be an intimate and tender occurrence. When you struggle with infertility, making a baby is not a private affair anymore; it is a stressful, scientific experience now shared with receptionists, doctors, nurses, drug companies and ultrasound technicians.  For years, my life consisted of daily hormone injections and vaginal ultrasounds, speaking with surgeons and geneticists, and fighting with insurance companies.


    Our whole life became a cycle of waiting. We waited to get approval from our insurance company in order to proceed with our IUI or IVF procedures. We waited for my medications to arrive. While going through a medicated cycle, I waited every morning in the reproductive endocrinologist’s office
    Sad about our wedding anniversary & no baby
    I convinced my DH to go to Trapeze School.
    to get monitored. I waited that afternoon for the phone call to see what medications I had to use that night based on my tests results that morning. I anxiously awaited my next appointment to see how I was responding to the medications and see if I could go through with the procedure. After every IVF, I waited to see if our embryos that were formed were healthy. Most often they were not, due to my genetic translocation. If I was lucky enough to be able to have an embryo to transfer, I waited to see if the embryo was going to turn into a healthy pregnancy. Then I waited to see if the pregnancy test results were positive.  Twice I miscarried after getting positive results.


    My husband and I were finally able to conceive our daughter with the help of our reproductive endocrinologist. We are incredibly grateful for our daughter, but I still feel sad for all we have gone through.  Struggling with infertility changed us.  We do not take life for granted and we do not sweat the small stuff. Yet, those stressful years always seem to be lurking in the shadows. 


    April 20-26 is National Infertility Awareness Week. According to RESOLVE’s website, “Infertility affects 7.3 million people in the U.S. This figure represents 12% of women of childbearing age, or 1 in 8 couples.” Spreading awareness of infertility is critical. Patients mustn't feel alone like I did.  The general public must learn to be sensitive toward those who are struggling with infertility. Don’t dismiss their pain by saying, “Don’t worry, it will happen,” or “You can just adopt.” It may or may not happen for them; you do not know. They may end up adopting, or using an egg, sperm or embryo donor or even a surrogate. They may choose not to pursue other family building options after infertility. But that doesn’t mean they are not still hurting.
    Me and my friends and fellow advocates at Advocacy Day!

     
  • Apr 25, 14

    This post was originally written for my friends at Bloggers For Hope.

    Endometriosis 101


    March is Endometriosis Awareness Month! Despite the fact that it affects 1 out of every 10 women, it takes an average of ten years for a woman to get diagnosed. Most people, including some medical professionals, will give an endometriosis patient a blank stare when they mention their disease.  The lack of awareness regarding this disease is appalling. The mistreatment of women on their journey to get properly diagnosed may be considered criminal or at the very least medically negligent. So in the spirit of the March, let’s talk about the basics of this disease.

    Endometri-what?

    ENDOMETRIOSIS is when tissue, very similar to the lining of the uterus, escapes the uterus and starts wreaking havoc in a women’s pelvic cavity as well as surrounding areas causing scar tissue, adhesions and painful lesions. How the disease originates is still disputed, but this tissue, that is reactive to a women’s hormones, can be present on the outside of the uterus, the ovaries, the bladder, the ureters, the rectum, the colon, and can go as far up as the diaphragm and the lungs and as far down as the sciatic nerves. There are also cases of endometriosis found in very odd places like the brain, but we won’t go there for now. 

    How do I know if I have it?

    Have you ever had to schedule events around your period because you were in so much pain? Do you have severe constipation or diarrhea around your period? Does it hurt to poop? Do you regularly feel like someone is stabbing you in your pelvis or back during any time in your cycle?  Do you need to have a bottle of wine before you have sex with your partner because the pain is so bad? Do you pee a lot or get frequent UTI’s? Do you have pain in your leg or hip that can be correlated to your cycle? Do you have unexplained infertility and pregnancy loss?  Do you have other weird immunological symptoms that are unexplained?  Have you seen 8 million doctors and yet have no explanation of why you feel the way you do? Have you been told you just have a low pain tolerance or that the pain is just in your mind? If you have answered yes to ANY of these questions, you may just have endometriosis.

    Now what?

    Here is the tricky part, getting a medically professional to believe that any or all of these symptoms are related and could be endometriosis.  Many doctors cannot see the “whole picture” of endometriosis. You need to find an endometriosis excision specialist. Excision surgeon is really the best way to get relief from the disease. 

    How do you know if your doctor is right? 

    You need to ask them the following questions: Do you use solely the excision method to remove endometriosis? If I have endometriosis symptoms that imply I may have it on my surrounding organs, like my bowels, bladder or diaphragm, will you work with other expert surgeons, during my operation, to remove the endometriosis? Can you make preserving my fertility a priority? If your surgeon answers “NO” to any of these questions, find another surgeon who will say yes to all.

    But I can’t afford an excision surgeon right now, what can I do to help my disease in the mean time?

    Not many excisions surgeons take health insurance. It is horrible. But they are worth every penny because you will feel so much better and have such a better quality of life. But in the meantime, eating gluten free and dairy free and all organic foods and going to see a chiropractor and acupuncturist could help lessen the inflammatory symptoms a little bit. Hormonal therapy and intervention help some women, but only for a short amount of time. Women who want to get pregnant, cannot get pregnant while on these drugs, and delaying conceiving to take these drugs could negatively impact a women’s fertility. Also, some women have bad side effects from this type of therapy and they need to research it thoroughly before agreeing to go on it.

    Get involved.

    Endometriosis is a very isolating disease. No one gets it. People think patients are just big whiners and can’t handle their “period pain.” I have heard these same people cry when they have gum boils on their lip. Well imagine 1 million gum boils all over your pelvis. That only begins to describe what endometriosis patients go through. If you are an endometriosis patient, connect with other patients on line in facebook groups like “endometropolis.” Come find me on twitter, @Chancesour, and I will introduce you to the amazing online community. Get involved with the non-profit, Endo Warriors, and see if they have a support group in your area or through their website buddy up with someone who lives near you and is also suffering with endometriosis to get community support. 

    The Endometriosis Foundation of America has started the ENPOWR Program and is reaching out to teenagers in the school setting to teach them about the disease to hopefully promote early diagnosis. There is the first ever Million Women March for Endometriosis in Washington D.C. THIS WEEK to spread awareness about the disease. This initiatives bring me great hope.

    In ten years, my ultimate hope is no one will say, “Endometri-what?” when a patient tells them about their disease. They will instead respond, “That is awful. I am so sorry you have that disease. Let me know how I can help you.”  March is Endometriosis Awareness Month. Consider yourself more aware.
    Check out my endometriosis awareness video here:
  • Feb 28, 14
     


    We are three days away from March, the start of Endometriosis Awareness Month. There are a lot of amazing Education and Advocacy events near and far for patients to participate in. Even if you cannot travel for these events, there are ways you can participate!

    Endometriosis Foundation of America March 7-8
    The EFA is a non-profit founded by Dr. Tamer Seckin and PadmaLakshmi to improve the lives of endometriosis patients through education, awareness and research. They host a weekend every year that brings patients, doctors and celebrities together to raise awareness for endometriosis.

    Medical Conference March 7: The EFA has been holding a medical conference annually for the past five years in New York City. Every year they bring many experts from around the world to come to this conference and talk about the latest studies and best medical practices related to the diagnosis and treatment of endometriosis. Some of the topics being explored this year are, "Endometriosis and Ovarian Cancer: is there a connection?", "Robotics vs. Conventional Laparoscopy" and "Tackling Human Complex Diseases: A Journey from Autoimmunity to Endometriosis."  This event is geared toward medical professionals, but patients are welcome to attend and can register for FREE here.

    The Blossom Ball March 7: The Blossom Ball is a fun event that has been held every year for the past five years. It is one of the main fundraisers for the EFA. Celebrities such as Susan Sarandon, Whoopi Goldberg and Tyra Banks amongst others, have attended in the past. Tickets for the event can be purchased here.

    Patient Day: Knowing that not all patients will be able to afford to go to the ball or be able to take off of work to attend the Medical Conference, the EFA holds a free Patient Day on Saturday March 8. The theme of this patient day is, "Outsmarting Endo: A Multi-disciplinary collaboration for women and their loved ones." From 10am-4pm, patients will listen to a panel of experts present on relevant topics related to endometriosis. My notes from last years conference can be found here. Patients can register here.

    If you cannot attend these events have no fear! I will be taking great notes throughout the conferences and will post them here. Also, follow the EFA on twitter to get live tweets from the event. The EFA also has on their websites past videos from previous conferences and will post the videos from this year as well. If you are interested in helping support their teen education programs you can "Check the Box" to donate to Teen Education on your tax form and the EFA teen education program will benefit.

    The Million Women March for Endometriosis March 13
    The goals of the Endomarch are to empower, educate and effect change. Women from all over the country and all over the world are coming together to gain the attention and promote awareness and education for what is often called "the invisible disease." Patients and their loved ones are traveling to Washington D.C. to gather on the National Mall to support the efforts of the Endomarch. The event is free and includes all meals for the day. It was just announced that Sheryl Crowe will be performing that day. The itinerary for the day looks really exciting and you can register here.

    If you cannot make it to Washington D.C. that day have no fear, there may be an event happing happening close to you. Contact your Endomarch State Representative to see what may be happening in your neighborhood. Also if you want you can be a virtual marcher and be matched up with someone who will march for you on that day in D.C. register here! Also any tweets made with the hashtag #endomarch2014 will be shown on the jumbotron tv live at the event! Another way to support the Endomarch and make a difference from home is to write a letter to your local and state representative making them aware of endometriosis and asking for their support in imperative to promote change. You can also create a flash mob video for awareness.

    I am working with  Endo Warriors this month to bring discounted mental health counseling to endometriosis patients. Part of the session fees will be donated to Endo Warriors.  Endo Warriors are also holding events in March, to learn more about what they are doing, follow them on facebook.

    These are just some of the amazing ways to participate in Endometriosis Awareness Month. There are even smaller ways, Change your facebook profile to yellow, send an email out to your friends about endometriosis, ask your local church or civic group if you can speak at a meeting about the disease or do something simple, like wearing a yellow ribbon on your jacket. Every little bit helps! If you have any questions about any of these events you can contact me CaseyBerna@gmail.com.





  • Feb 24, 14
    I cannot believe we are already in Week 6 of Blogging for Endomarch. The Million Women March for Endometriosis will be here before we know it!
    This week's question is: Why is it important for the world to recognize endometriosis?
    Since a picture is worth a thousand words, I recruited my daughter to help me.





  • Feb 24, 14

    Week 5 of Blogging for Endomarch: Pick one of the goals of the march and write about how it would change the lives of endometriosis patients.


    All of the goals of the Endomarch are amazing. I picked the below goal to write about:


    • To educate and train members of the medical community, in order to promote early detection and improved treatment


                    Every time I go for my yearly gynecological visit, the doctor checks my breast for lumps and does a pap smear on me to make sure I do not have any pre-cancerous cervical lesions or early cervical cancer findings. In the past, I have had concerning breast lumps found. I was immediately referred to a breast care and surgeon specialist. I have never had an abnormal pap smear, but friends who have had concerning results were advised to have follow-up testing and were treated with appropriate care and follow up. So why when I told my gynecologist about my horribly, painful periods, she just told me I had a low pain tolerance and dismissed me?


                    Here is what she should have done. I am so sorry to hear you are experiencing pain. Let me ask you some questions:


    1)     Do you have pain any other time in your cycle or is it mainly during your period? I would have told her, “I also have tremendous pain during ovulation.”


    2)     Do you have any digestive symptoms, like constipation or diarrhea? Do you notice these symptoms to get worse during certain time of your cycle? I would have told her. “Yes, I have horrible diarrhea at the onset of and during my period.”


    3)     Do you have any urinary symptoms such as frequent urination or frequent UTI’s especially during different times in your cycle? I would have told her, “I suffer from both of these things.”


    4)     Do you have pain during intercourse? When I first started having my symptoms I wasn’t having intercourse, but I would have told her, “When you put the speculum in my vagina, I want to cry out in pain.”


    5)     Do you find that certain foods trigger your symptoms or make them worse?  I would have said, “Yes, gluten and dairy often make me feel worse.”


    6)     Do you have any back or leg pain related to your cycle? I would have said no at the time, but I later developed this pain.


    7)     Do you feel more fatigued during your period or other times in your cycle? I would have told her, “Yes I feel extremely fatigued right before and during the first few days of my cycle.”


    8)     Does any over the counter pain medicines bring you any relief? I would have said, “No, no they do not.”


    9)     Does anyone is your family have a history of endometriosis or any notable gynecological occurrences? I would have said, “Yes, my mom had very painful periods and miscarriages.”


    10) I then wish my doctor would have said, “Based on your painful periods alone, I would have sent you to get checked out by an excision specialist for more testing. But you seem to have many symptoms of endometriosis. I am going to refer you to a specialist to get further testing if that’s okay?”


    THESE are the conversations that need to be occurring in the offices of gynecologists and reproductive endocrinologists everywhere. This conversation also needs to start happening in the offices of gastroenterologists, immunologists, neurologists and family practitioners. This especially needs to be going on in pediatric offices when young teenagers are first getting their periods and having pain.


     Instead, my doctor shamed me into thinking I was less of a woman because I couldn’t handle my painful periods because I had a low pain tolerance. Instead my gastroenterologist told me I had irritable bowel syndrome caused by anxiety. Wouldn’t you be anxious too if you were worried about having diarrhea all the time? 


    It is time to wake up medical community and start recognizing endometriosis and helping women with this invisible illness, the 1 out ten.

  • Feb 19, 14

    Week 4 for Blogging for Endomarch: Interview someone you know who is going to the march and post the interview.


    I have interviewed my Endosister Melanie from Long Island, New York. She and her husband are heading to the March. Melanie is a staple in the Endometriosis Twitter Community. You can learn even more about Melanie’s struggle with endometriosis and infertility on her wonderful blog:


    ·         When Melanie first diagnosed with endometriosis? Melanie was officially diagnosed with endometriosis in June of 2010.


    ·         How many surgeries have you had so far for endometriosis? Melanie has had 7 surgeries for endometriosis.


    ·         Why are you attending the MWMFE? Melanie is attending the MWMFE so that the community can come together and educate everyone else in the world who does not know about endometriosis. She also hopes this will help find a cure for those women diagnosed in future generations.


    ·         What do you wish everyone knew about endometriosis? Melanie wishes everyone knew that endometriosis is NOT just a once a month occurrence. Endometriosis is a life changer. Melanie says, “I am not the same person I was before my struggle with endometriosis. It can take a lot away from you.”


    ·         Did you know what endometriosis was BEFORE you were diagnosed or AFTER? Melanie had heard about endometriosis before she was diagnosed. She had two friends that had been diagnosed with endometriosis. But Melanie admits, “I did not know the extent of it.”


    ·         What frustrates you the most about endometriosis? Melanie exclaims, “Everything!” frustrates her about endometriosis. Melanie spoke a lot about how it is unforgivable that doctors who treat patients with endometriosis are not mandated to go for continuing education to be aware of the latest and most effective treatments for the disease. It exasperates Melanie that doctors that practice near her do not even like to be questioned by self-educated patients. She feels that so many women have endometriosis, 1 in 10, and most of the medical community does not even make an effort to stay on top of the best way to care for a patient.


    ·         What is a common misconception people have about endometriosis? Melanie feels that most people are not aware that the pain from endometriosis can come at any time, and often women with endometriosis are in pain every day.


    ·         How has endometriosis affected your life in a negative way? Melanie describes how her confidence has been greatly affected by endometriosis. Growing up she felt certain of many things in her future, one of which was becoming a mother. Now endometriosis has taken a lot of things away from her, including having biological children. Melanie states that she is working on her self-confidence and it is slowly coming back.


    ·         Who in your life has been the most supportive of your battle with endometriosis? Melanie feels that her husband and her parents have been most supportive to her during her battle with endometriosis. Both of them have supported her emotionally and financially.  She feels that her husband is her best friend and her rock.


    ·         How has having endosisters in your life affected you in a positive way? Melanie is extremely grateful for her endosisters, especially the ones from Twitter! Melanie gushed, “They are life savers! Mostly everyone thinks we are crazy. But they know exactly what I am talking about all the time!” She feels that they are always there for her, especially through the tough times.


    ·         If you could say something directly to medical professionals about endometriosis what would you say to them? Melanie pleads with doctors to get better diagnostic tools and treatments for endometriosis. She implores doctors to continue their education and stay on top of the latest treatments. She also wants excision surgeons to start taking insurance so that those who do not have the monetary means can afford treatment.


    ·         Which body parts were most damaged by your endometriosis? Almost everything in Melanie’s pelvic cavity has been impacted by her endometriosis. Melanie’s tubes are gone and her ovaries and uterus are in bad shape. Her culdesac has been obliterated and her intestines have never been the same since endometriosis has been found on them. Her ureters and bladder are also affected. She also lives with constant heart burn and acid reflux.


    ·         If you could describe the pain caused from endometriosis…..what would you say? Melanie feels that there is not only physical, but emotional and mental agony from this disease. But if she could describe the physical pain she said, “It feels like being stabbed in the vagina, kicked in the back and that someone is wringing out her uterus, like a wet towel.”


    I am so grateful Melanie spent her lunch hour speaking with me to raise awareness for the MWMFE. She is a fighter and a survivor and it was amazing speaking with her. Make sure to check out herblog!
  • Feb 14, 14

    I had the absolute pleasure of speaking with Julie Chang of Zen Fertility this past week. She is a lovely person to speak with and she has an incredible passion for helping women in the infertility community. We talked about endometriosis, one of my favorite topics, especially with March, Endometriosis Awareness Month, around the corner. We also talked a little bit about my own journey with infertility, to include my road to getting diagnosed with my translocation and my history of miscarriages.


    http://zenfertility.com/blog/2014/2/12/podcast-casey-berna-endometriosis-patient-counselor-and-advocate
  • Jan 30, 14

    Week Three of Bloggers Unite for #Endomarch2014 is upon us and I am so inspired when I read the blogs of other participants. This blog task may be one of the most important yet, writing a letter to your Congressional Representative regarding the march.

     It is so important to invite your Congressional Representative to the march and to give them information regarding the march. Upon contacting their representatives, some other women have actually been contacted and invited to a meeting with their representative to talk about the march and endometriosis. Maybe your representative cannot make the march, but maybe they will wear a yellow ribbon that day in support and post it? Maybe they will post information regarding the march on their social media sites? You never know what can happen and what doors may be opened! Feel free to cut and paste my letter and make it your own! Check out some of the other letters posted and feel free to borrow from them as well! Find out how to contact your representatives here: http://beta.congress.gov/members


    The Honorable Eliot L. Engel


    Member of the House of Representatives


    2161 Rayburn House Office Building


     Washington, DC 20515  


     



    I invite you to be part of an exciting worldwide movement on March 13, 2014 to support women with endometriosis. For far too long, women have been suffering with this disease in silence. Let this year be the year we leave our pain, hopelessness and despair behind. On March 13th we will bring our strength, resiliency and determination to the streets of Washington, D.C. to have our voices heard. It takes an average of ten years for a woman to be diagnosed with endometriosis due to the lack of education and awareness among medical professionals. By the time a woman is diagnosed, her health has been damaged, in many instances irreversibly.  Did you know that New York State Department of Health has recognized endometriosis to be one of three diseases that causes significant harm to young people? Statistics show that right at this moment, one in ten of your female constituents are suffering from endometriosis.  


    I am part of that statistic. I was misdiagnosed and misunderstood by many medical professionals while I was in my late teens and early twenties.  Despite the fact that endometriosis was present throughout my pelvic cavity, I was told by doctors that I had a low pain tolerance and that my symptoms were either just in my head or were caused by mental health issues. Finally, when I was 26 years old, a fertility doctor properly diagnosed me with endometriosis after performing an exploratory laparoscopic surgery. I have had a total of six endometriosis-related surgeries, the last of which occurred in October 2013 and was performed by 4 different surgeons: an endometriosis excision specialist, a colorectal surgeon, a urologist and a cardiothoracic surgeon.


    I am joining women gathered from across the nation in Washington, D.C. on March 13, 2014 for the Million Women March, to better educate medical professionals and spread awareness to the greater community, so that the disease can be more easily and timely recognized by doctors and patients alike.  One of our goals is to make endometriosis education part of school curricula to help young girls get diagnosed early and accurately. As we work toward our ultimate goal of encouraging research to find a cure for this disease, we will also advocate for better diagnostic tools for doctors and better treatment options for patients.


    I hope that you can join me in Washington, D.C. on March 13, as my representative and as an individual with compassion toward women suffering with endometriosis. You have a great record for championing healthcare for your constituents, and I would be proud to march beside you that day. For more information regarding the march, please visit: http://www.millionwomenmarch2014.org


    Thank you very much for your kind consideration.


    Sincerely, 

    Casey Berna
  • Jan 21, 14

    Hey Everyone!
      First of all, I am SO EXCITED to see fellow bloggers coming together for the Million Women March for Endometriosis. If you are just hearing about the Bloggers Unite for Endomarch 2014, or you have not done your first blog yet, have no fear, it is not too late! Come along and join us!
      For this week's blog post I decided to do a video on why I am Endomarching on March 13th in our nation's capital. The endomarch team is looking for women to make videos just like this one. There are a few parameters you will need to fill so there is a theme running htrough all of the videos. I will post them below. Here is why I am endomarching, I can't wait to hear why you are endomarching!

     
     
    Here is what the Video documentary team needs you to say! 
    1. Hi, My name is ___________

     

    2. I  have suffered from endometriosis for ______ number of years.
    3. I’m Endomarching because _________­­­­­­­

    4. I hope my story will move others to join our cause.


    5. Endometriosis: Time to end the silence.

     
    If you have any questions, feel free to email me, caseyberna@gmail.com or the video team
    endomarch.video@gmail.com ! Also, feel free to write the blog post out as well!
    
     
     
     
     
     
     
     
  • Jan 13, 14

    I advocated last year for RESOLVE. Cannot wait to go to Capitol Hill for Endometriosis Awareness.
     
    What: Endomarch 2014 is an endometriosis awareness event that is happening in cities worldwide.


    When: March 13th


    Who: Dr. Cameran Nezhat and his team have worked hard to organize this movement. They have recruited volunteers from all over the world to help make this happen. On March 13th, professionals, patients and their loved ones will come together to stand united with the desire to improve the quality of life for patients everywhere with endometriosis.


    Where: The march will take place in cites all over the world.  You can see what is happening in your city on the Endomarch website. I will be attending the Endomarch in Washington D.C.  There is a full day of events taking place that goes into the evening. The staff has secured hotel discounts for participants traveling into D.C. and even some airlines have participated in giving participants discounts. All of that information can be found under “files” on their facebook page.


    Why: Endometriosis is a disease that effects at least 1 in every ten 10 women, yet it takes on average ten years for women to get diagnosed due to the lack of education and awareness in the medical field and the general population. There is very little in the way of public awareness for the disease. Women with endometriosis often suffer in silence. Women often are left misunderstood and lose their jobs, friends and the support of their family while left in chronic, debilitating pain. Women lose their organs, their pregnancies, and their fertility as well. Endometriosis has a profound impact on the lives of its patients and those near to the patient. The only way we will see improvement in awareness of the disease, money raised to find better diagnostic and treatment for endometriosis is to come together as a community and make some noise. We need to be heard.


    How: Register to attend the march today. Contact a march precinct manager to see what is happening near you. Come join me in Washington D.C.. I will be giving out hugs to all the ladies I connect with online. I can’t wait!

  • Jan 14, 14



    10 weeks of Blogging until the EndoMarch


    Thank you for your interest in being an EndoMarch Blogger! You don't have to be going to the Endomarch to participate, you just have to be passionate about helping others and spreading awareness. To participate start completing the following blog tasks starting the week of January 12th.  Make sure to always add a link to the Endomarch website after every blog. If you are active on twitter and facebook, please share your blogs on social media. We hope to have an official “endomarch button” in the near future. Check back to grab it to add it to your blog. Thank you for participating and spreading awareness.


    Week 1 January 12th-18th

    Basic Info Post: The What When Why Who How of the Endomarch. Check the Endomarch website for details.


    Week 2 January 19th-25th


    What does the Endomarch mean to you personally?


    Week 3 January 26th- February 1st


    Write a Letter to Your Congressional Representative about Endometriosis, the Endomarch and why he/she should participate. For an example letter check back here to see my post. Click here to see who your representatives are.


    Week 4 February 2nd-February 8th


    Interview someone you know who is going to the march and post the interview. If you don’t know anyone else who going, have a friend interview you and post it. If you are not going and do not know someone who is, write about a celebrity that has endometriosis, or find a story online.


    Week 5 February 9th- February 15th


    Pick one of the goals of the march and write about how it would change the lives of endometriosis patients. Check out the goals here.


    Week 6 February 16th- 22nd


    Why is it important for the world to recognize endometriosis?


    Week 7 February 23rd- March 1st


    The Endomarch is three weeks away….How are you feeling about going? What are you most looking forward to/most nervous about! If you are not going to the Endomarch, write about ways you can spread endometriosis awareness in your immediate community.


    Week 8 March 2nd- March 8th


    Did you tell your friends, family, co-workers that you are going to the march? What were their reactions? If you are not going to the Endomarch you can answer, do your friends family and co-workers know about your struggle with endometriosis? Are they supportive?


    Week 9 March 9th-13th

    Last minute blog before the trip!  What are you packing? Do you have plans to meet up with any other women? Are you volunteering? What are your expectations of the day? What are you most looking forward to/nervous about?


    Week 10 March 14th -22nd

    Write about your experience at the Endomarch.  Post a picture and tell your story. What did the Endomarch mean to you?


    Please remember to share your blog on social media sites. If you are participating in the Endomarch Blogger Initiative please email me your name, where you are from and a link to your website so I can post a master list of all of those participating. You can email me the information at CaseyBerna@gmail.com or simple leave it in the comment section of the block.
  • Dec 29, 13

    Many people make New Year’s Resolutions around this time of year.  The definition of resolution is “The state or quality of being resolute; firm determination.” In the past I have made resolutions to exercise more, spend more quality time with friends and family or to eat better.  But as 2013 comes to an end and the start of a 2014 is imminent, I find myself simultaneously reflecting on this past year and thinking ahead to the future. I want to make attainable goals that really mean something, not only to me, but the entire endometriosis community.


    Simplify My Life: Endometriosis is a very complicated disease. Even the experts in the field admit there is still so much more to know about endometriosis in terms of the origin of the disease and how to diagnose and treat it. Just this past fall, I had a complicated surgery with Dr. Seckin and his team of three other surgeons. I cannot change that I have endometriosis, nor can I immediately change how complicated the disease is and the pervasive way it impacts my life. So I have decided to simplify everything in my life that I can. I find myself repeatedly asking the questions, “Do I need it?” and “Do I love it?” If the answer to both of these questions is no, then I am letting go of it. I am determined to live more simply.


    Be Gentle With Myself: I, like ALL other endometriosis patients, am a tough survivor.  But I also find, like MANY other endometriosis patients, I am tough on myself. Sometimes I think it stems from my own denial of the disease and other times I think it is from a deep desire NOT to let this disease cripple me or impact my life. I am constantly pushing myself to the point of exhaustion and often ignoring my endometriosis symptoms until they are debilitating. In 2014, I am determined to be gentle with myself. I am going to accept that I have a disease which makes me fatigued and sore. I WILL give myself a break. I am going to keep reminding myself that being aware of the impact of my disease and giving my body a rest, does not make me weaker, but makes me more awesome. I am determined be more awesome in 2014.


    Be More Vocal About My Disease: I am determined to talk about endometriosis whenever it seems appropriate. For example, a group of my husband’s and my high school friends came over for a holiday gathering.  The mostly male group asked me how my year was. After taking a deep breath, I briefly talked about my epic surgery with Dr. Seckin, the same as I would if I had a knee replacement. They listened and wished me well and then the conversation moved on. We all survived the conversation and were better off for having it. I am determined to be brave and talk about my endometriosis, because my friends, my family, my co-workers, my community and the world at large will ALL be better off for having this conversation.


    Reach Out to Other Women with the Disease: When I was first diagnosed with endometriosis, I did not talk about it and I did not know anyone else with the disease. Through the Endometriosis Foundation of America, Endowarriors, social media sites like facebook and twitter and even while sitting in the office of Dr. Seckin, I have connected with so many other women with the disease and have helped others get diagnosed. I have learned that reaching out not only helps others, but enriches my life is so many ways. The sharing of information and support is the only way we will get through the complexities of living with this disease. I am determined to make something beautiful come from this horrific disease.


    I am wishing and hoping that all of those who struggle with endometriosis find some moments of peace and happiness in 2014. With the resolution of 2013, may we be a year closer to a cure, to global awareness and general understanding of endometriosis.

  • Dec 13, 13

    Is the one you love struggling with endometriosis? Would you like to give her a gift this year that says, “I love you and I am thinking about you”? Here is a list of thoughtful gifts for the woman in your life that suffers from endometriosis.


    Gifts that are under $10


    You don’t have a lot of money to spend? Have no fear, you can still provide a thoughtful, loving gift for your friend.


    1.       A pair of fun socks: Comfy, cute or cozy, a nice, warm pair of socks can put a smile on anyone’s face.

     

    2.       Homemade baked goods: Baked goods are comforting, especially if they follow the endodiet and are gluten and dairy free.  Gluten and dairy free recipes can be found online and are easy to make. My favorite sweet recipe is this brownie recipe.


    3.       The gift of music: Look through your music collection and make a CD for your friend. Having endometriosis means often spending time alone while feeling sick.  Having a thoughtful playlist can make a person feel less isolated.


    Gifts in the $25-$50 range


    1.       Treat your friend to a manicure and pedicure by buying a gift certificate to a local salon.

     

    2.       Don’t like baking? Find a gluten free dairy free bakery on line and ship your friend some Christmas cookies.


    3.       Buy your friend something cozy to wear, like a nice scarf, or an extra comfy pair of pajamas.  Get her a new pair of slippers or a soft pair of yoga pants.


    4.       Endometriosis patients are often going back and forth to doctor’s appointments. If you know she has an ipad or a kindle, get her a gift card to purchase games, apps, movies or books to keep her busy in the waiting room.


    5.       Write your friend a certificate for a “girl’s night in.” Bring in take out and a movie on a night of her choice when may not be feeling well.


    Gifts in the $75 range and above


     
     
    1.       A heating pad is an endometriosis patient’s best friend and an excellent one is the gift that keeps on giving. You can find heating pads for less money, but there are some top of the line heating pads that can get pricey.

    2.       A gift certificate for acupuncture or massage therapy.  Endometriosis is an expensive disease and often treatments that can help with the symptoms of endometriosis are too expensive for patients to afford. Giving the gift of acupuncture or massage therapy would mean a lot to patients.


    3.       A donation to your friend’s “egg freezing,” “infertility treatment” or “surgery” fund would be an everlasting gift. Has your friend told you she is struggling to pay for needed treatments? Any donation would be a thoughtful gesture that shows you are aware of her struggles and care.


    You can find many products on line made by women with endometriosis for endometriosis. Some products even benefit charities worked to improve the lives of women with endometriosis, like the Endometriosis Foundation of America. Honestly, even the smallest gesture, like a simple card saying that you care, would mean the world to someone who is in pain and suffering during the holiday season.


    Casey Berna is a patient of Dr. Seckin’s and an endometriosis and infertility counselor and advocate. To learn more about her story and her practice go to www.CaseyBerna.com. 

     


     

  • Nov 24, 13
     
    One of my twitter besties and fellower endosister, @furrowedfox has nominated me and a list of others for "The Sunshine Award" after she was nominated by a friend for her own excellent blog.  You should know that it is not the first time I have been nominated for a sunshine award. At the end of every high school year, awards would be given out for attendance, high academic achievement in each subject, sports and other high achieving endeavors. I was in the honors program in an academically competitive high school and was by no way on the ivy league track like many of my friends. I didn't do sports. Certainly a young woman with endometriosis did NOT have a chance at perfect attendance. I usually didn't get any awards during these programs unless it was a participation certificate. That is until my junior year. That year, our class voted on The Christine MacMenamin Memorial Award, which has since been turned into a scholarship. Christine MacMenamin was a beloved junior who died in a car accident miles from school. The award was presented to, "The junior whose smile and gentle nature touch all who know her." I knew I had been nominated, but I didn't think I was going to win. But, I did win and the whole class stood and cheered. I was so touched. I came back to my seat and one of my best friends made a snarky comment, "Oh, wow, big deal, so you got the smiley sunshine award."  There went my moment. I felt embarrassed and deflated. If 34 year old-not as gentle-Casey could go back in time it would tell 16 year old Casey to tell her friend where she could stick her snarky, hurtful comment and our friendship. (Not so sure if 34 year old Casey would be nominated for that award, but I digress....)
     
    Here is the catch to being nominated, I have to answer ten questions assigned by my foxy friend. I then have to come up with ten questions for ten other blogger friends to answer. I am pretty sure this is just awesome press for the sunshine award people, but I am going to go with it and be a team player since my foxy friend just had endometriosis excision surgery and rocked it.  Also the 16 year old Casey would be totally into this.

    The Questions:
    1. Who/What’s your go to music/song/artist when you’re feeling down and need a pick-me-up?When I am feeling down I tend to listen to mellow music and wallow. In high school you would have caught me listening to Billy Joel's Greatest Hits Volume 3. If you want to get more depressed you listen to, "And So it Goes." In college you would find me listening to the entire Counting Crows Album, "August and Everything After." I dare you to listen to "Raining in Baltimore" and try to feel happy. During my infertility years I listened to many "mixes" that I put together. I wrote a blog post about it. These days I will put on the Lumineers album if I need to mentally vegetate. I saw them in Central Park last summer, they were awesome.
    2. What accomplishment are you most proud of?                                                                     Raising a little girl who is kind, thoughtful and polite enough to get her own smiley sunshine award, but fierce and confident enough to tell her friend to shove it when faced with a snarky comment.
    3. What is your go to comfort food?                                                                                                   I could write a whole blog on this. Basically anything that has dairy or gluten in it, extra points if it has both, like pizza. Also anything fried and salty. Anything with chocolate. None of these things are good for endometriosis by the way.
    4. What advice would you give your 20 year old self if you could?                                                   I would tell my 20 year old self to go to see an endometriosis expert immediately. I would tell her to tell all of the bajillion doctors who had no idea what was wrong with me to shove it. I would tell her to freeze as many eggs as she could as soon as she could.
    5. To date, what was your happiest moment in life?                                                                      My happiest moment was when I saw my daughter's heart beating at 6 weeks. It was a tiny blob that was flickering. After surgeries and procedures, we were finally pregnant. I was relieved. I didn't really know about miscarriages. I didn't really know about preterm labor. I didn't truly appreciate how fragile that moment was and how things could turn so poorly so quickly. My ignorance at that moment allowed me to be truly happy and enjoy the moment. It was a luxury that my next four pregnancies that would end in miscarriages didn't afford me. Enjoying the moment and not being fearful of what could come next is a luxury I know so many of my friends that are still fighting hard in the infertility trenches will never experience.
    6. And what was your saddest?                                                                                                           I think it was the final realization that we will never ever have any more biological children and probably will never have any more children through other family building options.
    7. If you were a Muppet which one would you be and why?                                                         Strangely,  I asked this SAME question to student applicants who were applying to be a part of my Fordham Global Outreach team to Tijuana Mexico to do service learning on the border. I feel like I am a combination of a lot of muppets! I took a Muppet personality test and got Kermit. But I surely think as a Leo there is some Miss Piggy to my personality.
    8. Dark chocolate or milk chocolate?                                                                                                 I love milk chocolate but stupid endometriosis has me eating dark chocolate because it doesn't have dairy in it.
    9. Who – person, character, alive, dead, fictional, cartoon – would you most like to have a conversation with?                                                                                                                          I think it would be Jim Henson, creator of the Muppets. He was an incredible soul.
    10. Cake or pie?                                                                                                                          Neither! Again in trying to be gluten and dairy free I avoid both of them. I do make great gluten free dairy free brownies and a mean gluten free apple crisp though.
    For my Ten Sunshine Nominees listed below here is what you have to do:
    1. post the sunshine award logo
    2. Answer the following ten questions on your blog.
    3. Come up with ten questions of your own and nominate ten new bloggers!

    My Ten Questions:
    1. Do you like your name?
    2. What is your most prized possession?
    3. If you were to treat yourself, what would you do?
    4. What is one of the defining moments in your life?
    5. What is your favorite recipe?
    6. Who is the first person you call when you have important news good or bad?
    7. What breaks your heart?
    8. Vacation on a beach by the ocean or by a lake in the woods?
    9. What is your favorite smell?
    10. Name your favorite non-profit and why.

    My Ten Sunshine Nominee Bloggers:
    http://www.fromiftowhen.com/
    http://www.secretinfertility.com/
    http://endendoforever.blogspot.ca/
    http://ourlastembryoblog.wordpress.com/
    http://journeywithendometriosis.wordpress.com/
    http://endofromtheheart.blogspot.com/
    http://mischiefmanagedblog.com/
    http://jenrutner.com/
    http://dellaquella.wordpress.com/
    http://onfecundthought.com/
     
    
    
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