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.  

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

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.

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.

My Infertility Story

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!

 

Endometriosis 101: The Basics

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:

https://www.youtube.com/watch?v=lw2DuJweCZU&feature=youtu.be

What's Happening: Endometriosis Awareness Month

 

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.

Week 6: Blogging for Endomarch 2014: For Future Generations

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.

Week 5: Blogging for Endomarch, Wake up Medical Community

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.

Week 4 for Blogging for Endomarch: Interview with fellow marcher Melanie

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!