ENDOMARCH 2019

ENDOMARCH 2019
Saturday, March 30, 2019

!SAVE THE DATE!
Join thousands of endometriosis activists from around the world on EndoMarch Day, Saturday, March 30, 2019, to keep fighting for urgently-needed endometriosis health care reforms.

TEAM USA – EARLY BIRD REGISTRATION
Click here to pre-register today for select Team USA locations so that you can get a head start on 2019 and a chance for early bird giveaways.  US-based EndoMarch events are free, family-friendly, and open to all. Full event details coming soon.


TEAM INTERNATIONAL EVENT INFO
For those outside of the U.S., click here to find an EndoMarch event in your country

(*NOTE: Some countries have their EndoMarch events on different dates. Check the above-listed page for more details).


ABOUT THE ENDOMARCH MOVEMENT
The EndoMarch movement has ignited an international endometriosis uprising that has swept across the globe in 60+ countries and counting, leading to dramatically increased awareness and inspiring meaningful policy changes around the world, including here in the U.S., where Senators Orrin Hatch and Elizabeth Warren are spearheading a bipartisan bill to increase federal funding for endometriosis research and public awareness campaigns.

Since our first campaign in 2014, the Worldwide EndoMarch has grown to be the largest, internationally-coordinated endometriosis event & coalition in the world, representing over 100 endometriosis patient advocacy organizations, groups, and medical societies from around the world, which have joined together to fight for change and address the urgent unmet needs of those suffering from endometriosis, a potentially crippling, whole-body chronic disease that is one of the leading causes of gynecologic hospitalization and school absences in adolescent girls. Visit endomarchnews.org to learn more or email us at info@endomarch.org.


STAY CONNECTED
Follow us on social media for updates, or email us at info@endomarch.org or visit our blog at endomarchnews.org (website is under construction).

FACEBOOK TWITTER INSTAGRAM ENDOMARCH BLOG


#ENDOMARCH2019 HASHTAGS
#EndoMarch2019 #Endometriosis #EndoHealthCareReformsNow #GoYellow4Endo #TeamEndEndo #CrowdSourcingfortheCure #EndoMarchFellows #HackEndoConference2019

EndoMarch work with Senators & DOD

ENDO CHAMPIONS ON CAPITOL HILL

We would like to thank the Society for Women’s Health Research (SWHR) for inviting EndoMarch and other endometriosis organizations to Capitol Hill for SWHR-organized Senate Panel Hearings sponsored by Senators Hatch, Warren, and Duckworth, to help address the urgent unmet needs of those suffering from endometriosis. As a result of everyone’s united advocacy efforts, several more U.S. Senators and Congress members are now championing the cause of endometriosis, and are working together to include endometriosis in a bi-partisan LHHS Bill and Report for fiscal year 2019 (F19).

TWITTER THANK YOU CAMPAIGN
Join our Twitter Thank You Campaign to thank SWHR and all of the following Senators and Congress Members who are taking action to get more support, funding, and awareness for those suffering from endometriosis, and who are supporting endometriosis education in schools initiatives going on now.

U.S. SENATORS
Sponsors of the DOD Bill
The Honorable Senators Orrin Hatch (R-UT) and Elizabeth Warren (D-MA)

SUPPORTING SENATORS FOR LHHS F19
The Honorable Senator Roy Blunt (R-MO)

The Honorable Senator Tammy Duckworth (D-IL)

The Honorable Senator Patty Murray (D-WA)

SUPPORTING U.S. CONGRESS MEMBERS FOR LHHS F19
The Honorable Congresswoman Rosa DeLauro (CT-03)

The Honorable Congressman Tom Cole (OK-O4)

The Honorable Congressman Rodney Frelinghuysen (NJ-11)

The Honorable Congresswoman Nita Lowey (NY-17)

SOCIETY FOR WOMEN’S HEALTH RESEARCH
Click here to give the amazing members of SWHR a shout out on Twitter!

endomarch acog corrected JUST TOP PART WITH LOGOS

Student Fellow Shayla Moore, on her First OR Rotation

Thank you to brilliant premed student, Shayla Moore, for taking time out of her busy schedule to blog about her experiences as a Student Fellow participating in the Endometriosis Fellowship program with Dr. Camran Nezhat and his fellows. You can follow these stories online using hashtag #EndoMarchFellows.

Here’s Shayla’s blog about her first day as an observer in the OR: 

OR ROTATION, TUESDAY, JULY 17, 2018
“Upon arrival, myself and 5 others were waiting for the clock to hit 6:30 to see Dr. Wood open up the doors to lead us to everything we had been waiting for.

Waiting in the staff lounge for the patient we would be observing to go under anesthesia, myself and the other student fellows began getting to know each other a little further. We all instantly clicked and were laughing together in no time. We talked about where each of us went to school, if we were planning on going to medical school, how we heard about the program, and how cool it was that we were all able to hear about it in different ways but were now all sitting in the same room.

We all had a mutual feeling of gratitude for everyone who made this program happen, as opportunities as hands on as this one don’t come by often at all for undergraduate students. We laughed and said it was almost too good to be true!

There was a younger girl with her mother within our group who we later found out was unable to take part in the shadowing because of her age. We asked her mother, who stayed with us, if her daughter was interested in medicine and she said yes. She also let us know that she has been diagnosed with endometriosis and told us her story, that after 7 surgeries and a great bond with Dr. Nezhat, she was there with us today to spread awareness and allow herself and her daughter to learn more about the disease. We all thought it was amazing to hear firsthand experiences from someone. It’s one thing to watch an operation but it’s another to communicate with the patient after the operation is complete and get a better understanding of everything they have overcome thus far. Hearing her story strengthened our bond further and reminds us of the impact we want to one day have on the world and the lives we hope to one day be able to change.

Dr. Wood and Dr. Nezhat came to pick us up and we listened to Dr. Nezhat explain how much he enjoys helping the youth in furthering their education. He said that he does it in hopes that one day we will do the same when we are doctors and in a position to help, and that is something I know will stick in my mind forever. He spoke of research opportunities and made it clear that he was there to help us.

After listening, we went into the locker room to get our scrubs on and that’s when reality began to set in for us. We all felt a sense of reward and accomplishment for being in that moment, with our scrubs, face masks and hairnets on, ready to observe. A kind nurse led us to the OR and in my head I still couldn’t believe this was all really happening. I walked in and felt the cold air on my skin and the adrenaline began to set in. I looked at my fellows and everyone’s eyes were glowing. It’s such a nice feeling to share this experience with people who are in similar positions as I am. We all have something to relate to.

While watching the operation every doctor in the room gave us insight in some way, we could tell how excited they were to have us and how eager they were for us to learn. This made us all feel even more welcomed.

After each operation Dr. Wood and Dr. Nezhat were sure to check in with us, asking if we had any questions and made it clear that if we did we could always contact them any time.

Once the day was over and it was time to take off the scrubs, we all couldn’t stop talking about when our next visit would be (we were obviously beyond excited to come back). Dr. Wood and Dr. Nezhat checked in with us one last time and introduced us to a few other doctors who welcomed us warmly. They then let us know they had other appointments to attend and would be leaving but had lunch on the way for us.

Overall, the experience was amazing and I know I can say that for everyone who was observing with me that day. We walked in as strangers but through a mutual love of medicine and changing lives, we left as good friends ready to meet again and learn more. I especially appreciate the doctors for being so kind and open when it came to having us around. They made the environment open for an endless amount of learning and I look forward to being with them soon enough!!”

 

 

Interview with Autumn Mendoza Montgomery

ENDO WOMEN MAKING HISTORY SERIES

Interview with
AUTUMN MENDOZA MONTGOMERY

endomarch share your story Autumn Montgomery picture 1

ENDOMARCH HQ (HQ): Autumn Mendoza Montgomery, thank you for agreeing to be interviewed for the Endo Uprising Digital Magazine! We are so excited to be able to get to know your story and shed some much-needed light on this horrible disease. What were the first symptoms you experienced with Endo? How did your symptoms progress? Do you have classic endo symptoms or atypical? When did you first hear about endo and when did you think you may have it? How long did it take you to get diagnosed?  What is the hardest part about your Endo?
AUTUMN MONTGOMERY (AM): I had been on birth control since I was 14 after having a very abnormal and bedridden menstrual period, so it is unknown how long I have actually had it. When I was almost 25 I got off of birth control because it was affecting me emotionally. Then a few months later, as I was in the airport waiting on an international flight, I got the worst pain in my abdomen. I was so confused and concerned about what it was. The pain shot down through my legs making them almost numb, yet painful. I was crying and in the fetal position on the uncomfortable airport chairs.

Finally, when I got on the plane I realized that I had started my cycle. The pain didn’t minimize to a tolerable state for about 4 hours. A month later the same thing happened, at home, alone, as I was lying on the living room floor unable to move to get medicine or a heating pad. That’s when I made a doctors appointment. The doctor told me I PROBABLY had endometriosis, but there was no way to know for sure without surgery, which they wouldn’t do for diagnosis reasons only.

The hardest part about my endo now, is the unknown. Having to look at my calendar any time I make plans hoping it doesn’t fall on the first few days of my cycle while I am in immense pain. I am constantly on edge at work during those times just praying it won’t flare up until I am home.

 HQ: What is your craziest doctors story? Either positive, negative, or neutral. Did you almost die from surgery or have you ever experienced severe adverse side effects from medications?

AM: I don’t really have a crazy story regarding Endo. Nothing in particular at least. To me, every monthly cycle is crazy because it is almost like I forget how unbelievably bad the pain is until it hits again.

 HQ: The birth control pill or other synthetic hormone contraceptives are often prescribed as a first treatment for those with endometriosis. Have you had different hormonal treatments? If so what was your experience? 

AM: I was given the IUD about a year after the diagnosis. The insertion while having Endo is a whole other thing. It eliminated my periods, therefore eliminating endo pain for almost two years. Unfortunately, IUD’s often cause ovarian cysts. It did this for me. I had several painful ones, but one that grew the size of a peach that rendered me practically immobile. I was on leave from work for weeks before finally getting surgery. The benefit from the surgery was that they were able to identify and remove endo from my ovaries. The recovery was not as I expected, and instead of missing 10 days of work like I was told, I ended up needing almost 3 weeks. They said that it is probably do to the fact that it wasn’t only a cyst removal, but scraping the endo probably left scar tissue that was taking longer to recover from.

 HQ: The opioid crisis is at an all time high and very prevalent in the news. As a chronic pain sufferer, what is your opinion on the use and reported abuse of opioids? Do you think the crackdown on opioids should pertain to those with Endometriosis, why or why not? If you had chance to speak on Capitol Hill to lawmakers about this issue, what would you say? If not opioids, what alternative therapies do you think women with endo need to be informed about and that need more attention?

AM: I personally do not like taking any medications except Ibuprofen or Tylenol.  However, these do not work for Endo. They don’t even take the edge off. I have Norco prescribed to me, but rarely ever take it simply because I do not like the way that I feel on it. Also, even the norco does not eliminate the pain completely. I would say for me it probably takes it to a healthy women’s very bad menstrual cramps. Not fun, but manageable. My doctor has recommended acupuncture to me but unfortunately it isn’t covered by my insurance so it is just not affordable.

I think the opioid crisis is a very real and serious issue. Unfortunately women with endo simply do not have a choice when we have a flare up unless you want to just endure the pain.

HQ: What do you want people to know about Endo and being an Endo Sister?

AM: This disease affects your whole life. It may seem minimal compared to other horrible diseases, but it needs to be considered one of them. No matter how spiritual, healthy or on top of it we are, it is always there. Sometimes I think it is a good thing that no one knows how it starts, so that I don’t blame myself. However, it is beyond frustrating when there is so little known about a condition that affects my whole life and puts me in such severe pain several days out of every month. Those of us who have it, please do not stay quiet. Talk about what its like, share your story. Because you are most definitely not alone.

Also, one thing that I haven’t read about anywhere but both my doctor and myself have experienced is pain during any other female procedure. Pap smears, although uncomfortable for all women, are extremely painful for me. IUD insertions, tampons, sometimes sexual intercourse, literally everything that has to do with that part of my body is painful most of the time.

HQ: Can you tell us about the journey that inspired you to tell your powerful story and fundraise for endometriosis? Was there ever a time where you were uncomfortable telling your story? Why? 

AM: I am a very open person so I have never felt uncomfortable sharing my story. And I have always wanted to do more and help in any way I can. But this past February was really the pushing point for me. I was able to get pregnant, relatively quickly for someone with endo. But at 10 weeks, I lost the baby. There is no way to know for sure if it was natural causes or if endo caused me to lose my child. But at that moment, I promised my baby that I would do everything I could to help others with this condition so that they may never have to suffer the pain of a miscarriage because of this disease.

HQ: Where would you like to see yourself in 5 years?

AM: I would love to say that I will have a child by then. But with this condition, that is unknown. I would like to participate more and fight for awareness and a cure. And, on a far less happy note, if I have had a child, I will most likely be on a surgery table getting a hysterectomy. As hard as it is to make a decision to take out what I feel encompasses so much of my womanhood, I can’t imagine continuing to live my life in this kind of pain. I want my freedom. And at this point in the progress for a cure, a hysterectomy at 35 years old is my only option.

HQ: What is an insight or a piece of advice you wish someone would have told you when you first got diagnosed? Is there anything else you wish to say about endo, advocacy, awareness, or life in general? 

AM: I am far luckily than most to have a wonderful doctor who suffers from endo herself (not that I am glad she suffers, but the care is so much more empathetic). When I was told, she was very informative and compassionate, giving me all the information she had as well as everything she herself had experienced.

There is one thing that I wish I would have known. I wish I would have known how much it would truly affect all aspects of my life. I was told it would be painful during my periods, but I never put together how much that would affect my planning, vacations, work schedule, relationships, etc. Perhaps it was better to not scare me all at once with this information, but it may have helped me sooner.

The one positive thing that I have gotten from dealing with this condition is an overall understanding of my body as a woman. I am so in tuned with my cycles, my pain, the overall state of how my body is feeling that it has given me a deeper understanding of myself. I can sense when the pain is coming, I can sense when I am going to have a flare up one day. Many women live without truly understanding what is going on within their body, endo has forced me to figure it out. I suppose you have to try to find the silver lining in anything, even pain.

HQ: Thank you so much again, Autumn, for taking time out of your busy day to bravely share your story, which will no doubt be a source of strength and inspiration for other Endo Sufferers, but can also help physicians and researchers gain further insight into the heterogeneity of symptoms & effects of treatment, which is absolutely crucial for improving treatments and steering us one step closer to the cure.