What's Happening: Endometriosis Awareness Month

 

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

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

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

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

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

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

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

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

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

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

Week 6: Blogging for Endomarch 2014: For Future Generations

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

Week 5: Blogging for Endomarch, Wake up Medical Community

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A podcast with Zen Fertility: Spreading Endometriosis Awareness

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

http://zenfertility.com/blog/2014/2/12/podcast-casey-berna-endometriosis-patient-counselor-and-advocate

Week Three of Bloggers Unite for #EndoMarch2014: Letter to my Representative

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

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

The Honorable Eliot L. Engel

Member of the House of Representatives

2161 Rayburn House Office Building

 Washington, DC 20515  

 

Dear Representative Engel: 

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

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

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

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

Thank you very much for your kind consideration.

Sincerely, 

Casey Berna

What #Endomarch2014 Means to Me Personally

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

 

 

Here is what the Video documentary team needs you to say! 

1. Hi, My name is ___________

 

2. I  have suffered from endometriosis for ______ number of years.

3. I’m Endomarching because _________­­­­­­­

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

5. Endometriosis: Time to end the silence.

 

If you have any questions, feel free to email me, caseyberna@gmail.com or the video team

endomarch.video@gmail.com ! Also, feel free to write the blog post out as well!