EndoTruths: Infertility and Mental Health

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

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

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

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

You are not alone. We are all in this together.

 

 

 

 

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.

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

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!

Become an Endomarch Blogger and Spread Awareness

10 weeks of Blogging until the EndoMarch

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

Week 1 January 12th-18th

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

Week 2 January 19th-25th

What does the Endomarch mean to you personally?

Week 3 January 26th- February 1st

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

Week 4 February 2nd-February 8th

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

Week 5 February 9th- February 15th

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

Week 6 February 16th- 22nd

Why is it important for the world to recognize endometriosis?

Week 7 February 23rd- March 1st

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

Week 8 March 2nd- March 8th

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

Week 9 March 9th-13th

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

Week 10 March 14th -22nd

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


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

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. 

 

 

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.