New Year's Resolutions 2014

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

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

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

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

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

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

Holiday Gift Guide for Your Loved One with Endometriosis

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

Gifts that are under $10

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

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

 

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

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

Gifts in the $25-$50 range

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

 

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

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

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

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

Gifts in the $75 range and above

 

 

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

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

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

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

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

 

 

The Sunshine Award

 

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

 

Here is the catch to being nominated, I have to answer ten questions assigned by my foxy friend. I then have to come up with ten questions for ten other blogger friends to answer. I am pretty sure this is just awesome press for the sunshine award people, but I am going to go with it and be a team player since my foxy friend just had endometriosis excision surgery and rocked it.  Also the 16 year old Casey would be totally into this.

The Questions:

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

For my Ten Sunshine Nominees listed below here is what you have to do:
1. post the sunshine award logo
2. Answer the following ten questions on your blog.
3. Come up with ten questions of your own and nominate ten new bloggers!

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

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

 





Endowarriors Launch Party

Endowarriors is an up and coming non-profit whose sole mission is to support women with endometriosis. The founders of this organization, Jill Feursich, Nicole Malachi and Jordan Davidson,

The Beautiful Co-Founders of Endowarriors

through their own profound understanding of endometriosis, saw there was a gaping hole in the needs of the community in terms of support.  They started Endowarriors to provide a safe place for women to talk about their fears, their pain and everything else that comes with battling this chronic and pervasive disease on a daily basis.  They currently run a support group in New York City as well as one in New Jersey. Their dream is to one day have an endowarriors support base in every city around the world. They also have started an endobuddy program which pairs endosisters from around the world. The goal of that program is for everyone struggling with endometriosis to at least have one person in their life there to support and understand them until they have access to a support group.

Endowarriors, which started with simply a few people hanging out in one of the co-founder's apartment, is quickly picking up speed and gaining more attention from the endometriosis community. They have even been asked to be a special part of the upcoming Million Woman March for Endometriosis and recently participated in The EFA's Nurses Conference. This week they hosted a fabulous launch party to celebrate their new website: http://endowarriorssupport.com/ . The evening was filled with great food, drinks and enthusiastic chatter amongst connected endometriosis patients and their loved ones. There were four of us guest speakers, who along with the co-founders themselves, engaged the energized crowd. I was incredibly honored to be one of them. We all testified to the prevalence of isolation amongst endometriosis patients and the importance of having a support network filled with empathetic, compassionate people. Dr. Datta, a gynecologist whose focus is endometriosis, spoke about how the disease is still so misunderstood by many medical professionals. Dr. Wilson, a psychologist who works regularly with endometriosis patients as part of a multi-disciplinary team lead by Dr. Seckin,  spoke of the emotional impact endometriosis has. My endosister Rachel Cohen and I presented a patients' perspective on what Endowarriors has meant to us.

I met so many incredibly strong women last night. I was so touched to hear their stories. No matter how sick, swollen or fatigued, everyone made such an effort to get dressed up and to show up,

Endosisters all dolled up and looking fierce

not an easy task for an endometriosis patient. The co-founders have always had this dream of having a free night out for ladies with endometriosis where they can eat, drink and be with another in a positive space. They worked hard to make last night happen and it was such a successful event. I left feeling strong, empowered and with a full heart. The co-founders made each one of us feel so special and welcomed. I felt like a valued and accepted part of an incredible community. Thank you to the co-founders for a job well done and I have NO DOUBT this is only the beginning of the incredible difference they will make in this community.
       Here is my speech from last night! There was no light in the room, so it is very hard to see, but the audio is clear! After having an EXTENSIVE surgery

with four different surgeons to remove my endometriosis, only THREE WEEKS ago it felt amazing to be there! In my speech I talk about my surgery with Dr. Seckin and how I got through it all thanks to my infertility and endosisters.

         

5 Things to Do Before Your Endometriosis Surgery

5 Things to Do Before Your Endometriosis Surgery

Unfortunately, surgery is something that every endometriosis patient has to endure in order to find lasting relief for her symptoms.  The phrase many doctors use to introduce surgery, “Well, let’s go in and take a look” sounds simple enough, but there are deeper implications of what that means to the patient.

I just recently had my 6^th endometriosis related surgery, an endometriosis excision with Dr. Seckin.  The idea of having surgery means something very different to me now than when I first learned I had to have my appendix out almost a decade ago.  I don’t know if it that I have gotten better at having surgery or it is just that I now have a better surgeon, but these past couple of recoveries has been a lot smoother overall. I also attribute my post-op success to knowing what to expect during surgery and being able to physically and mentally prepare for it makes all the difference.

Here are 5 things I do before every surgery:

1.       Get my body ready: My past surgery was an extensive one, so I wanted to make sure I was in the best shape possible going in. I tried to go for walks when I felt up for it just to get my body moving and feeling strong. I made sure I drank at least 64 ounces of water every day starting two weeks before the surgery to be nice and hydrated. Drinking so much water also made my bowel prep go smoother! I went to my chiropractor faithfully leading up to the surgery knowing that surgery and recovery is often rough on my back. I made sure I had enough sleep and tried to eat as best as I could.  I made sure I remembered to eat my multivitamin daily and tried to eat foods rich in iron. I also take the time to get a bikini wax. After my first emergency laparoscopy in the dead of winter, I was shocked to learn that a nurse had to “prep my pelvic area” via a bic razor. I now go in prepared.

2.       Get my house ready: Before all of my surgeries I have certain chores I like to do beforehand that will my make my life easier when coming home from the hospital. I wash all the bed sheets in the house the day before surgery. I love coming home from the hospital to clean sheets.  I also make sure I have fresh towels available. I also do all of my laundry and make sure I have a top dresser drawer dedicated to post-op clothes. In it I have loose pants, cotton shirts, clean underwear and comfortable bras. I also like to give the house a good cleaning pre-op, knowing it will be awhile before I have the energy to do so.  If you can have a friend or relative gift you a pre-op and post-op cleaning service, even better!

3.       Shopping List: About two weeks before surgery, I like to create a master shopping list of things I will need post-op. I make sure I have the all food I need in the house in order to prepare for my bowel prep and other light foods I will eat immediately post-op. I take an inventory of my clothing and note if I need an extra pair of sweat pants or a new pair of slippers.  I make sure I have my favorite shampoo, deodorant and moisturizer on hand. These little things make such a difference. I also make sure the house has plenty of things like toilet paper! Few things are worse than running out of toilet paper in the middle of bowel prep!  I also make sure I have things to entertain myself. I often will go to the library beforehand and get a few good books to read or DVD’s to watch.

4.       Preparing Work: Hopefully your job is understanding and respectful of your needed surgery and leave. It is so unfortunate that endometriosis is such a misunderstood disease and is not recognized by so many. I think the following questions are good to ask yourself when thinking about postop work: Are you able to work from home postop? Can you start back with half days? Is there work you can do ahead of time to make things run smoother when you are gone?  Are you able to be honest with your boss on what kind of surgery you are having?  Can a co-worker cover for you? I always find having a work plan before the surgery leads to much less anxiety postop.

5.       Preparing Emotionally: A patient often feels a lot of anxiety and sometimes even sheer panic when faced with an impending surgery. For weeks leading up to my past surgery, whenever I would became anxious I would do a little medication. I would take a deep breath in and say in my mind, “Breathe in peace,” and as I exhaled I would say, “Breathe out stress.” I would repeat that until I felt calmer.  I also made it a point to schedule a meeting with my therapist to talk about the stress and anxiety about the surgery a few weeks before.  Reaching out to family and friends is also a big part of being emotionally supported.  About a week before surgery, I made sure I sent an email out to close friends and family explaining what I was going through and how they could help.  Like many other endometriosis patients, I value my independence and have a hard time accepting a lot of help. Obviously, when you have surgery accepting help is inevitable.  I am not sure what I would have done without people cooking for me and my family, going shopping, sending me cards and taking me to postop appointment in those first weeks.  It was nice to feel their emotional support.  

Excision surgery is currently the best way to help improve the quality of life for an endometriosis patient.  Although it can seem daunting, I have found often the anticipation of the surgery is sometimes worse than the actual surgery and recovery itself.  Mindfully preparing for surgery, both physically and emotionally, can often help with those pre-op jitters and lead to a less stressful recovery period.

Endometriosis and Miscarriage

October 15th is a yearly date in which those who have experienced pregnancy loss are remembered. There is still so much taboo and silence regarding these losses. The American Pregnancy Association states that miscarriage "is the most common type of pregnancy loss, according to the American College of Obstetricians and Gynecologists (ACOG). Studies reveal that anywhere from 10-25% of all clinically recognized pregnancies will end in miscarriage."  Many endometriosis patients are often at a greater risk for miscarriages, preterm labor and ectopic pregnancies due to the effects of this disease and have experienced great loss.

There are many reasons that a woman with endometriosis can have a miscarriage and luckily, through medical intervention, some of the reasons can be helped.

Egg Quality

At the Endometriosis Foundation of America’s last Medical Conference, there was a lot of talk about infertility and early pregnancy loss in endometriosis patients.  Endometriosis affects everything from the quality of the eggs, to their maturation to embryo implantation.  Doctors have always suspected that endometriosis can affect the uterine lining, often interfering with embryo implantation. But now doctors are realizing endometriosis can even affect the egg quality itself.  A recent study 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. This study suggests that women with endometriosis have a lower egg quality. One reason for this lower egg quality may be that women with endometriosis have cytokines in their peritoneal fluid, which is caused by inflammation. This fluid is part of the follicular fluid which encases the eggs and can affect them adversely.  Doctors at the conference suggested that egg freezing is an option for young patients worried about their future family building. It is also recommended for endometriosis patients, especially those with recurrent pregnancy loss, to use in-vitro fertilization and preimplantation genetic diagnosis to help achieve a healthy pregnancy. These techniques will allow doctors to see the genetic makeup of an embryo to see whether it is genetically sounds. Only transferring healthy embryos will allow patients to have a better chance at avoiding pregnancy loss.  Studies have also shown that women with endometriosis have a higher success rate using frozen embryo transfer as opposed to doing a fresh IVF cycle.

Immunological Component

It is the belief of Dr. Seckin, along with other authorities in the field, that endometriosis has been found to have an immunological component that can lead to miscarriages.  This immunological component is again due to excessive inflammation caused by endometriosis. The body's own impaired immune system can result in rejection of the early implanted embryo.  He believes any patients who have gone on to become pregnant and miscarry after surgical intervention should arrange for a reproductive immunological profile.  An expert reproductive immunologist can help correct or strengthen a women’s immune system leading to a better chance for a healthy pregnancy.

Anatomical Reasons

Unfortunately, endometriosis can leave a destructive path in a patient’s pelvis. Scar tissue and adhesions can form on the fallopian tubes which can lead to an ectopic pregnancy. This loss is not only devastating, but dangerous because it is very important to terminate the pregnancy before the tube ruptures. Also some women with endometriosis often have a uterine defects such as an abnormally shaped uterus (heart shaped, or with a septum [wall] dividing it). This abnormality may interfere with maintaining a pregnancy. Dr. Seckin asks many of his new patients who have had children if they have had atypical births. Many have experienced pre-term delivery and emergency C-section. 

 

After complete excision of endometriosis in the pelvis all inflammation sources are eliminated. Dr. Seckin has seen a great number of his patients go on to have healthy pregnancies. He takes great care in carefully removing endometriosis on the uterus and the ovaries to help patients with their family building. He often can surgically correct uterine defects and also free up the fallopian tubes to help patients get pregnant. For those still have issues, he works with some of the best Reproductive Endocrinologists and Immunologists to help patients have the best chance at achieving a healthy pregnancy. 

Endometriosis is a disease that forces patients to live with chronic pain. It is cruel that is also can lead to the devastating experience of pregnancy loss.  Please know that you are not alone. October 15^th is a day to remember these losses and reach out to other women who may be suffering these losses in silence.

Radio Interview With Victoria Hopewell on Miscarriages

I recently spoke with therapist, author and infertility advocate Victoria Hopewell about my experiences with miscarriage. The American Pregnancy Association states that miscarriage "is the most common type of pregnancy loss, according to the American College of Obstetricians and Gynecologists (ACOG). Studies reveal that anywhere from 10-25% of all clinically recognized pregnancies will end in miscarriage." A miscarriage can happen for many different reasons. RESOLVE has a great information regarding why a woman may miscarry:  http://www.resolve.org/diagnosis-management/infertility-diagnosis/common-causes-of-miscarriage.html  Unfortunately, some women may never know exactly whey she miscarried. Miscarriage for anyone is devastating, but when a woman is also struggling with infertility and then miscarriages after finally becoming pregnant, it seems especially cruel.

In the following radio interview I talk to Victoria about my experience having 4 miscarriages and the road to diagnose my balanced translocation, a genetic mutation affecting the majority of my eggs that causes recurrent pregnancy loss.

http://webtalkradio.net/internet-talk-radio/2013/09/16/in-search-of-fertility-miscarriages/

Endometriosis and the 5 Stages of Grief

Endometriosis is a chronic, painful disease that has a profound impact on every aspect of a woman’s life. Sometimes a woman can suffer with symptoms for more than half her life, depending on when she starts to menstruate and when she goes into menopause. That is a long time to be in pain and ultimately it can alter a patient’s emotional well-being. Adding a mental health provider who understands the disease can have a positive impact on your overall care. When your life revolves around a chronic illness such as endometriosis, there exists a loss of health and quality of life that you have to cope with.  Endometriosis patients deal with grief on a daily basis.

Dr. Elisabeth Kübler-Ross (July 8, 1926 – August 24, 2004) was a Swiss-born psychiatrist who first discussed the Stages of Grief as a pattern of adjustment that is now known as the Kübler-Ross model. In her book, On Death and Dying, she proposed that the five Stages of Grief are denial, anger, bargaining, depression, and acceptance.  As an endometriosis patient myself, who has often turned to a mental health professional for support, I find that these stages of grief can also be applied to endometriosis patients. What Dr. Elisabeth Kübler-Ross states for dying patients is also true for those of us facing endometriosis; “individuals experience most of these stages, though in no defined sequence, after being faced with the(ir) reality.”  Below I explore how the Stages of Grief can be applied to endometriosis patients in order to illuminate the complexities of how an endometriosis patient can be feeling on any given day.

Denial

Merriam-Webster defines denial as a “psychological condition in which someone will not admit that something sad, painful, etc., is true or real.” For a patient, denying that endometriosis is a serious disease that can impact a person’s daily life is sometimes easy to do when our society as a whole is completely in denial regarding the gravity of endometriosis.  Sometimes our families, co-workers and friends belittle endometriosis due to their own ignorance about the disease.  Our own gynecologists and other doctors are also in denial as to the gravity of the disease or sometimes even the existence of the disease! As patients we want to believe them. We wish that our pain was manageable and that our bodies were not failing us. As our symptoms get worse, we take more pain medications and keep going, not wanting to face the reality of yet another surgery.  We try to ignore the disease. We don’t want to believe that this disease can have lasting impact on not only our fertility, but our urinary, digestive and sometimes even our respiratory symptoms.  We deny until our symptoms finally make us feel scared or completely broken.

Anger

Endometriosis is one of THE most frustrating diseases out there, and there are many legitimate reasons for patients to be angry.  For myself, I know anger comes and goes.  It takes a lot of energy to be angry, and energy is not something many endometriosis patients have a lot of. There are systemic reasons to be angry:  “Why aren’t there any excision specialists in my area? Why won’t anyone take my disease seriously? How come no one has heard of my disease? Why isn’t there a cure? Why is no one talking about this disease?” There are also very personal reasons to be angry, ranging from the frustrating to the profound: “Why didn’t my first gynecologist properly treat and diagnose me a decade ago? Why can’t I JUST have sex with my partner without negative repercussions? Why can’t I go out when I want/eat what I want/exercise like I want?  Why can’t I take care of my kids like they need?  Why can’t I keep a job? Why do I need to have surgery all the time? Why can’t I leave my bed?” And for many women with endometriosis, one of the greatest losses to be angry about, “Why can’t I ever get pregnant or carry a baby to term?”

Bargaining

When trying to bargain with a disease like endometriosis, I feel like we are trying to bargain with the devil. Patients are constantly trying to bargain with this disease to no avail. We bargain for health, energy, and the ability to go places and do things. We bargain for fertility and the chance to have babies. If I eat right, exercise, try herbs, get rest, drink water, cut out caffeine,  go to acupuncture, yoga, or physical therapy, stop drinking alcohol, take all of my vitamins, and take awful prescribed drugs, maybe I will be okay? If I do all of these things, maybe the disease won’t spread and maybe I won’t have to have another surgery? We bend ourselves backwards and alter our lifestyles for the small hope that we can control the endometriosis, keep it at bay, beat it into submission. Although all of these tips may help daily symptoms and improve a patient’s quality of life, endometriosis is an insidious disease that for the most part cannot be bargained with.

Depression

Many women battling endometriosis are also battling clinical depression.  Many of the symptoms of endometriosis are eerily similar to symptoms of depression.  The Mayo Clinic states the following symptoms as warning signs for clinical depression: Irritability or frustration, even over small matters. Loss of interest or pleasure in normal activities. Reduced sex drive. Insomnia or excessive sleeping. Changes in appetite.  Slowed thinking, speaking or body movements. Indecisiveness, distractibility and decreased concentration. Fatigue, tiredness and loss of energy — even small tasks may seem to require a lot of effort. Feelings of worthlessness or guilt. Trouble thinking, concentrating, making decisions and remembering things. Frequent thoughts of death, dying or suicide. Crying spells for no apparent reason. There are physical limitations and exasperations that come with being in chronic pain and living with endometriosis, like slowed thinking, irritability and fatigue, which also mimic clinical depression.  There is also a natural sadness, fear and uncertainty when coming to terms with having an incurable, chronic disease and all of the lifestyle implications that follow. Feeling all of these emotions and more are so important.  It is vital for endometriosis patients to seek out support through mental health counseling, especially if there are thoughts about suicide or overwhelming hopelessness. 

Acceptance

Acceptance is a general feeling that although things are bad they are going to be okay. Acceptance is also the idea of embracing the disease instead of resisting it. This idea seemed foreign to me at first. We are always talking about how we are Endwarriors and how we will fight the disease with everything we have.  The problem with fighting or resisting the disease is that it is exhausting.  My own therapist recently said to me, “Surgery is like food and water to you. You need it to not only survive but thrive, so why not embrace it instead of fighting the need for it.” I am learning I have to choose my battles.

When I have the energy I will fight for endometriosis awareness. I will fight to educate those around me, my family, doctors, and others in the general community about endometriosis. I will fight for women who do not have access to good, quality care. I will fight for a cure. These are all positive outlets for my anger and helplessness. But I am through fighting with my endometriosis because I will not win. It exists in my body and I will accept that I cannot change it. The harsh reality is that with the exception of having an excellent and knowledgeable excision specialist, there is little more I can do.  I will embrace my next surgery with because as hard as surgery is, it will help me. I will embrace my endodiet when I can because I know it will help to ease my symptoms. I will try and face this disease with courage, dignity and grace and survive it to thrive.

 

Many people feel that endometriosis is only a physical illness and they don’t recognize the emotional toll that a disease like this takes on a patient.   Mental health is just as important as physical health, and patients are encouraged to seek the support of a mental health counselor to help cope with this disease. Dr. Elisabeth Kübler-Ross documented the Five Stages of Grief many years ago when having conversations with patients who were dying. As endometriosis patients, although we are not dying, we have many limitations to our quality of life. It is no wonder that we too feel grief when facing the daily challenges endometriosis poses.  These Stages of Grief can help us all understand our emotions as we strive to accept our disease and seek out the proper surgical treatment that will help us.

EndoDiet Cook Book Review: Gluten Free Mediterranean Gourmet Cuisine: Invaluable Recommendations for a Healthy Immune System.

Following a gluten and dairy free, organic diet can help endometriosis patients manage their symptoms. I recently had the chance to chat with Aslihan Sabanci, an author and entrepenuer, who has written an excellent cookbook and gluten free guide that is great for endometriosis patients. Her book is called, “Gluten Free Mediterranean Gourmet Cuisine: Invaluable Recommendations for a Healthy Immune System.”

 

Mrs. Sabanci was delighted to answer questions and give tips on how to start eating gluten free. She started eating gluten free many years ago for her the benefit of her own health and wrote this cookbook out of her need to find tasty and practical recipes.  Here is what Mrs. Sabanci had to say:

 

Q: I read that from the time you were a little girl you were experimenting in the kitchen and using your friends and family as taste testers! You take pride in your recipes. How important is it for you that your food not only be gluten free, but taste good?

 

A: I think it is very important that my recipes taste great. Great tasting food is the key to eating a well balanced diet. Don't forget, if your healthy food does not taste great, you will always prefer the fried, super fattening and super tasty unhealthy food over the healthy food.

 

Q: You stress how important it is for your recipe ingredients to be practical and expressed your frustration in many gluten free recipes having bizarre, hard to find ingredients. 

 

A: Today, especially in big cities like New York and Los Angeles, there are more gluten free options to choose from. However, many gluten free ingredients are still hard to find when you are traveling or when you are not living in the cosmopolitan cities. That's why for my book,  I wanted to use easy to find ingredients, from any regular grocery store or supermarket.

 

Q: Dr. Seckin believes there is an immunological component to endometriosis. Some women who are diagnosed with endometriosis also suffer from other autoimmune inflammatory diseases. Women with endometriosis also suffer from chronic fatigue.   In your book, you talk about ways to boost your immune system through diet.  What is an easy way an endometriosis patient can boost their immune system on a daily basis?

 

A: To boost the immune system, it is very important to eat a well balanced diet full of whole foods and plenty of antioxidants. I mention all of these valuable antioxidants, their resources and how much they are found in which nutrients in my book, and I worked with an award winning doctor and a dietitian, and a nutritionist to figure out the antioxidant values of each and every recipe in my book. These doctors then formed charts to graphically present these calculated antioxidant values. This way my readers can be informed about the health benefits of my recipes.  To help boost the immune system, the most valuable antioxidants to consume are: Fiber, Vitamin A, Vitamin E, Vitamin B1, Vitamin B2, Niacin, Folic Acid, Vitamin C, Calcium, Magnesium, Iron, Zinc. The most efficient way to increase antioxidant intake is to increase the daily  consumption of fruits, vegetables and legumes. I also dedicated a chapter in my book on these nutrients and their natural resources.

 

Q: Many women reach for gluten/dairy/sugar filled foods when they are stressed or when they have their period, which can only inflame their endometriosis. It can be a physiological response, just as much as an emotional one. What is your “go to” recipe in your book that can replace any chocolate/salty/fried comfort foods?

 

A: When I am craving chocolate, it usually works for me to eat a handful of pistacchios to harness the craving. In addition, fruity deserts are an excellent way to stop cravings for the high calorie deserts and in addition, by consuming fruity desserts you will also get plenty of antioxidants as a bonus! For example, Kabak Tatlisi, a savory and sweet pumpkin dessert, has plenty of vitamin C, A,B1, B2 and magnesium in it.

 

Q: For the woman just diagnosed with endometriosis, what would be staple items from the supermarket you would pick up right away to get started on a gluten free diet?

 

A: Quinoa flour (to make bread or any other pastries), quinoa pasta or

the actual quinoa, all kinds of rice to make variety of rice dishes, so you do not get bored with cooking only one type of rice (wild rice, basmati rice, risotto rice....) and plenty of fruits and vegetables.

 

               

Q: When you first started eating gluten free, what was the hardest to give up?

 

A: Pastries....

 

Q: How did eating gluten free change how you feel?

 

A: I felt less swollen and bloated. I started fitting into my jeans again.

 

 

Q: Gluten free eating is hard, although your wonderful book makes it easier! What words of encouragement do you have for people taking on gluten free eating?

 

A: Do not be scared! Go beyond the books and experiment for yourself. Do not forget to exercise and to get enough good night sleep. Try to make best out of it, and have fun!

 

 

   Mrs. Sabanci’s cookbook is excellent. You can find simple and delicious recipes that are great for the Endodiet. Within the pages, one can find a multitude of easy, fresh recipes from Guacamole to Sesame Chicken, to delicious desserts and smoothies. Although some of the recipes contain dairy, many of the dairy ingredients are optional or can easily be substituted with almond milk or Earth Balance.  You can find Mrs. Sabanci’s cookbook on Amazon: http://www.amazon.com/Gluten-Free-Mediterranean-Gourmet-Cuisine-Aslihan/dp/6058882613

My Truth about the Endodiet

                I can remember my first appointment with Dr. Seckin like it was yesterday. For the first time, I was meeting with a doctor who completely understood the ins and outs of a disease that had always been misunderstood and misdiagnosed by all of my doctors for most of my life. Dr. Seckin not only understood endometriosis and how to treat it, but he also had extra information about the disease that I had never been exposed to before. As I was leaving my initial appointment I remember him saying to me, “Remember, no gluten or dairy, eat organic and try to stay away from sugar, caffeine and red meat.”  In that moment, my whole world changed.

                I love to eat. Maybe it is the Italian ancestry pumping through my veins or maybe it is because for a lot of my life I have used eating as a coping mechanism to deal with stress. Having a bad day? A milkshake will surely make me feel better. Ice cream, pizza, Frappucinos, mozzarella sticks, chicken parmigiana are just some of the foods I loved to eat. Yet, I would always notice these foods did not love me. Bloating, cramps, immediate diarrhea and sometimes even vomiting would often come after I ate these foods. In high school, my friends and I would always go to a pizzeria and Starbucks before going to a Wednesday night meeting for an after school activity. I would almost always spend the first 20 minutes of the meeting in the bathroom because I would feel so sick, suffering from what I thought was irritable bowel syndrome. My husband always thought I was lactose intolerant. We knew that if I ate certain foods I would have a certain amount of time to get home to use the bathroom. But it wasn’t just dairy products that made me sick. Eating bagels or too much Italian bread would also make me feel ill.

                When Dr. Seckin told me about the Endodiet years of feeling ill after eating certain foods finally made sense to me. Endometriosis is such a pervasive disease that affects all aspects of my life. I shouldn’t have been too surprised that endometriosis and diet were also connected, but I was. It never crossed my mind. Furthermore, after talking to many women in the endometriosis community, they verified that they too felt better after staying away from certain foods.  Many women through the process of trial and elimination had figured out just what Dr. Seckin had told me and were already doing the Endodiet. I am continuously amazed and impressed by the ingenuity and wisdom of patients and their drive to improve their daily lives as they cope with this chronic mysterious disease.

                It is really hard eating gluten free, dairy free, organic and staying away from caffeine, alcohol and most sugar. There are times I do really well with the Endodiet. There are other times where I do not do as well and then pay the price for eating as I wish. Can eating right cure my endometriosis? I don’t think so. But, I do feel that when I eat right my quality of life improves dramatically. Unfortunately, endometriosis in of itself causes a lot of stress, which then tempts me to eat things that are unhealthy! It takes a lot of discipline for me to cope with my stress in a healthier manner and I fear it is something I will probably be working on for the rest of my life.

Three Questions to Ask Your Surgeon Before Being Operated On

Three Questions to Ask Your Surgeon Before Your Operation

Most endometriosis patients have similar experiences when it comes to finally being diagnosed with the disease. It starts with the appearance of a host of inexplicable unpleasant symptoms that show up a few years after menstruation begins. Many women go from doctor to doctor, trying to figure out what exactly is wrong with them. Some women will come across a knowledgeable gynecologist and figure out early on that it is endometriosis. Some women will not be diagnosed with endometriosis until they are having fertility issues. 

For most women, their first surgery to treat endometriosis is not performed by an expert endometriosis surgeon. For most women, their first surgery is performed by a well-meaning gynecologist or reproductive endocrinologist.  These doctors go in and ultimately do more harm than good.  They use surgical techniques that actually cause the endometriosis to spread in the future.  They will prematurely do hysterectomies on patients because they feel it is the only solution. They can damage vital organs in the body while trying to remove the endometriosis due to their inexperience. Or they simply leave endometriosis in places they do not feel comfortable operating on.  Some doctors open a patient up and quickly close them up after seeing how bad the disease is. They realize immediately that they are over their heads. Patients may get temporary relief from these surgeries but often, within months, they feel worse than they did before the surgery.

Here are three important questions to ask your surgeon before agreeing to be operated on:

Do you use the excision method to remove endometriosis?

Dr. Seckin, expert endometriosis surgeon and co-founder of the Endometriosis Foundation of America, uses the excision method to remove the endometriosis. This is the best way of removing endometrial implants. Endometriosis is like an iceberg. Doctors can only see the tip of the disease when looking at it, but the majority of the disease lies deep below the surface. Most gynecologists and reproductive endocrinologists use laser ablation and vaporization to remove the endometriosis. Not only can heat damage the ovary, but when a doctor burns away the endometriosis it turns the tissue black, making it very hard to see if there is endometriosis that needs to be removed from the surrounding tissue. More importantly, this method does not remove the deep infiltrating endometriosis that lies beneath the surface. Only excision can address that. Some experts believe that vaporizing the endometriosis can actually spread it to more places in the abdominal cavity. This method also does not remove the majority of the disease.

If I have endometriosis on my bowels, ureters, nerves or any other places that is not related to my reproductive system, will you remove it? Will you have other experts involved in my surgery who know how to treat endometriosis?

Most doctors are not endometriosis experts. Most often, gynecologists and reproductive endocrinologists will ablate endometriosis off reproductive organs in hopes of giving their patients temporary relief or helping them achieve pregnancy. When they go in and see that a patients’ bowel is connected to her uterus or her ureters are attached to her pelvic wall, they don’t know how to handle it. Doctors will do what they can, but will leave the bulk of the disease. Ultimately this just creates more scar tissue and more pain for the patient.  Dr. Seckin will gather a team of professionals that are adept at treating endometriosis. He will have an urologist, a gastroenterologist, or a neurologist involved with the surgery if a patient needs extra care. It often takes a team of experts to combat this disease.  It is important that your doctor has a plan for treating ALL of your endometriosis.

Can you make preserving my reproductive organs a priority?

The old school way of treating endometriosis was to offer patients two options, Lupron or a hysterectomy. It is extremely surprising to hear that so many doctors still only offer these solutions, whether a patient is 19 or 46. Expert endometriosis surgeons will try their best to free and preserve the fallopian tubes, ovaries and the uterus of their patients. Dr. Seckin has not only helped many patients live a life that is more pain free, but has helped them achieve pregnancy after surgery. Sometimes the endometriosis is so wide spread or adenomyosis is so severe that even the best expert will have to perform a partial hysterectomy or a full hysterectomy on a patient.  It is one of the many devastating, lifelong impacts of this horrible disease.

Search for the Best Care

For many patients, when their doctor finally puts a name to their lifelong symptoms, there is an immediate sense of both gratitude and fear.  There is the attitude that since this is the one doctor that could finally put a name to my misery, than he/she must be able to fix it. In this time of crisis and acceptance, endometriosis patients must behave like patients being diagnosed with cancer. They must seek out the best, most knowledgeable endometriosis surgeons to ensure quality care and treatment of this debilitating disease. Hopefully one day, expert care will be available in every city, covered by every insurance plan, to lessen the already heavy burden of the patient.

 

EndoWarrior The Song!

Some of you may be surprised by this, but I like to write music! I know, I know, crazy right? I am a social worker!! But sometimes I am lucky enough to be on the side of inspiration. Sometimes the angels whisper in my ear, sometimes they hit me over the head with a frying pan. This is one of the frying pan situations. As many of you know, the Million Women March for Endometriosis is happening this March in DC and in cities all over the world. I feel like there needs to be a rally song, a song to unite us all, to make our voices heard, to explain to the world what we feel on a daily basis. I titled the song after one of my favorite Endometriosis Support Groups and a popular hashtag on twitter that explains how fierce and brave us endometriosis patients are. Below is a link to the song.  A fellow Endowarrior, Rachel Cohen, is performing it with her beautiful voice. She is not only a singer, but an author and is compiling a book of stories from endometriosis patients from around the world. Check out her blog at http://endofromtheheart.blogspot.com/

EndoWarrior Working Lyrics

People say I’m crazy,

That I’m just not strong enough.

People say I’m lazy,

That it’s time that I get tough.

They don’t understand,

This pain I can’t ignore.

It hurts with every breathe,

I can’t take it anymore.

Chorus:

I may not be strong enough or tough enough for you.

You may not choose to see my reality as truth.

But, I’ll no longer listen to your words that are only hurting me.

I am a warrior you will see.

 

Surgery after surgery

The many scars run so deep.

And yet it always seems,

Nothing brings relief.

Hard to keep my head up,

Feel so all alone.

Countless hours spent,

With my heating pad at home.

Chorus
I may not be strong enough or tough enough for you.

You may not choose to see my reality as truth.

But, I’ll no longer listen to your words that are only hurting me.

I am a warrior you will see.

Bridge

It’s time we come together and stand as one in pain.

It’s time for once our cries aren’t heard in vain.

If we lean on each other our power will not wane.

 

The mountains I have climbed,

One day you will understand

Then you’ll finally know

How strong I really am.

Chorus:

I may not be strong enough or tough enough for you.

You may not choose to see my reality as truth.

And I’ll keep fighting this disease that has completely ravaged me.

I am a warrior you will see.

Endowarrior you will see.