Saturday, February 28, 2015

Endometriosis and Infertility Awareness Videos 2015

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.

Wednesday, February 25, 2015

2015 Endometriosis Events to Look Out For



 
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)      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
 
3)      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!

Thursday, January 15, 2015

Participate in EndoMarch through NY TODAY SHOW TV Brigade

 


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!

Tuesday, December 30, 2014

Safe Space and Communities Turned Toxic

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.  

Sunday, August 3, 2014

The Dreaded Bowel Prep


 
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

Sunday, May 11, 2014

The Challenges of Parenting with Endometriosis

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.

Friday, April 25, 2014

RESOLVE to Know More About the Link Between Endometriosis, Infertility and Recurrent Pregnancy Loss

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.