Recognize Endo! - Week 6 Bloggers Unite #EndoMarch2014

It is important for the world to recognize endometriosis! 

I want the world to recognize this disease so that so many others don't have to suffer in silence.  I don't want any girl or woman to stand in the shoes I have stood.  It is very difficult to be diagnosed with an incurable disease, and even more so when it's one that no one understands.  It can be a very lonely diagnosis because you feel alone and misunderstood, and I personally have even been made to feel embarrassed or ashamed of myself due to disease that I have no control over.  There have been times I felt I couldn't measure up, because I felt broken. This is NEVER okay.  Many doctors brush it under the rug, because they don't have answers or truly understand what they are dealing with.  It is discriminating. This disease is important and needs to be recognized.  Currently over 200 million women and girls worldwide suffer from endometriosis, that is roughly 1 in 10.  Effective treatments are far and few between.  This has to change, and we are making that happen. 

 I do NOT want others to suffer in silence!

End the Silence!

Goals - Week 5 Bloggers Unite! #EndoMarch2014

For Week 5, I'd like to emphasize one of the goals of the Million Woman March for Endometriosis and I'd like to explain how it would change the lives of endometriosis patients.

I would like to begin by informing you of all of the goals of The Million Woman March for Endometriosis.  They are all wonderful goals and choosing one was difficult, because they will all make such a huge impact.

Goals:

Empower

• To unite women and their supporters to take a stand against endometriosis

Educate

• To raise awareness about endometriosis and its effects on women and girls
• To educate and train members of the medical community, in order to promote early detection and improved treatment

Effect Change

• To educate the public and medical professionals about endometriosis
• To find a cure for endometriosis, and to develop non-invasive diagnostic tests
• To improve health screenings for endometriosis among girls and young women in public schools
• To educate our government and congress to allocate funding for endometriosis

You can find the goals here at: http://www.millionwomenmarch2014.org/our-goals/


The goal that I have chosen to focus on is "Effect Change".  

I feel that by effecting change in regards to endometriosis that it will greatly impact all who suffer from this disease.  By educating the public and medical professionals about endometriosis (endo), we are creating change. Many have never heard of endometriosis, therefore they have no idea what it is, what it involves, or what it means to the person who is suffering with endo. At minimum, others will have an understanding of what endometriosis is and hopefully how it affects the patients who suffer.  By educating the medical professionals, patients who suffer from endo will have more effective treatment options. 

Finding a cure for endometriosis would certainly impact every endo patient. This would mean they could live a normal, pain free life, work normal job hours, keep plans and arrangements and carry on normal daily tasks that many who suffer currently find difficult to do at times. Developing non-invasive diagnostic testing would eliminate so any surgeries.  Currently the only way to diagnose endo is through surgery. 

Improving health screenings for endomtriosis and conducting them in public schools could help to eliminate the time lapse of diagnosis that occurs.  Currently, the average diagnosis takes 6-10 years after symptoms begin to occur. This is unacceptable.  In some cases irreversible damage can already have taken place before you even have a diagnosis.  This would greatly impact an endo patients life, by saving time in diagnostics and beginning effective treatments as early as possible.

Allocating funding and working with government in regards to endometriosis would be extremely helpful as more research and treatment options would become available. It would bring more acceptance and attention to this disease. Patients who suffer from endometriosis should not be treated any differently than a patient with any other illness.  Allocating funding would open many doors for endo patients.  


I do feel that we are already effecting change!  The more awareness and attention we bring to this disease, the closer we are to more understanding and effective treatment!  We are making a difference!  I am so grateful for this event and the platform it has presented us with!  ENDometriosis!

For more information regarding the Million Woman March for Endometriosis please visit:
 http://www.millionwomenmarch2014.org/

The Interview - Week 4 Bloggers Unite! #EndoMarch2014

Okay, so I do realize that I am several weeks behind... My apologies.   
February was quite a month for me.  March is looking so much brighter! 

For this weeks blog post, I interviewed someone that I know is going to the Million Woman March for Endometriosis! She'll be attending virtually! 

This wonderful person I speak of is Mirah Jo Cuthbertson, also known as MJ to her close friends and family.  Mirah Jo currently resides in Aberdeen, N.C.
MJ was born in Adak, AK but was raised in Oak Harbor, WA on Whidbey Island until she was 21. Mirah Jo has helped me with other projects as well (see photo to the above)! This cause is very close to both our hearts. 


Here are the questions and responses from our interview.

When were you diagnosed with endometriosis?   
I was diagnosed with Endometriosis in October of 2007 after having my first laparoscopic surgery and months of being on narcotics for "unknown" pelvic pain and cysts.

Did you know what endometriosis was before you were diagnosed? 
I knew very little about Endometriosis before being diagnosed simply because my mom and cousin had both suffered from the disease. 

What do wish everyone knew about endometriosis? 
I wish that everyone knew that hysterectomies are NOT the answer, BC pills are NOT the answer, that it is definitely okay to get 2nd, 3rd, and 4th opinions, and that you are never ever ever alone in this fight! And also that it is MORE THAN OKAY to cry!

What have you found to be the most difficult part of having endometriosis? 
One of the most difficult parts of this illness is letting people help me. I am a "do it myself-er" and to be able to ask and accept help, and allow those I love to see me vulnerable has proven to be extremely rough.

How important is the support of others and what does it mean to you personally?
It is one of THE MOST important things, and personally it makes me feel loved and "normal". Like I'm not broken or a misfit, but that I'm lovable and a whole person. 

What are your feelings about the Million Woman March for Endometriosis? 
I think it is one of the greatest opportunities we as women with Endometriosis have to raise awareness and share our stories and raise our voices to help find a cure! 

If you could say anything to medical professionals about endometriosis, what would that be? 
I would simply ask that they take a step back and remember to have compassion for those of us who are in pain, I would ask them to take the time to try and learn even one specialized skill that would help further our care, and I would ask them to ask themselves if we were their daughters, their mothers, their wives, how far would they go? What would they do to find relief, to find a cure, some of us are those women. 

Lastly I just want to express my utmost thanks for the opportunity to share my story. Each of us has one, mine is no more important than any other woman, so thank you for listening.


Thank you ever so much Mirah Jo for all of your help!  I consider getting to know you, although not in person yet, to be a true blessing.  It is truly wonderful to work with you and to spread endometriosis awareness! I appreciate you sharing your story with us, I know it isn't easy to do and I thank you from the bottom of my heart!  



For more information about the Million Woman March, please visit: http://www.millionwomenmarch2014.org/
If you are unable to attend the march please register here to virtually attend! 
https://events.r20.constantcontact.com/register/eventReg?oeidk=a07e8x0p4e56b251872&oseq&c&ch

Week 3, Bloggers Unite #EndoMarch 2014... Letter to my Representative.

So this week as part of the Bloggers Unite for Endometriosis we wrote our Representatives,  I decided to go ahead and write my Senators as well,  The more the merrier right!?! :) 

If you are interested in writing to your representative to help with the cause you can find out how to contact your representatives here: http://beta.congress.gov/members

I decided to put some flyers about the event in with my letter as well.  

I wrote to my Representative:

Congressman Mike McIntyre
2428 Rayburn House Office
Washington, D.C. 20515

Dear Representative McIntyre,

My name is Krystal Agic and I am a resident of Carolina Shores of Brunswick County, NC. I am writing you today to invite you to be part of a movement that will impact women’s health significantly.  This movement is The Million Woman March for Endometriosis and it will take place in Washington, D.C. on March 13, 2014. Women have long suffered in silence with this disease, including myself.  We hope for a change that will lead to better understanding, education and medical care.  On this day many will gather to create that change and let their voices be heard.  Due to a lack of awareness and knowledge in the medical profession many women suffer for up to ten years without diagnosis, left to wonder what is wrong with them and without answers.  Many of these women are misdiagnosed and therefore are inaccurately treated. In many cases by the time of a correct diagnosis irreversible damage has occurred and her health has been severely affected.  Over 176 million women currently suffer from endometriosis.  Statistics show that at this moment 1 in 10 of your female constituents are currently suffering. 

I am one of the many women who endure this terrible misunderstood disease.  I was diagnosed through surgery at the age of sixteen.  I have suffered with this disease for twenty years now.  Currently, there is no cure and many treatments prove to be ineffective.  Despite numerous surgeries and a confirmed diagnosis I am still untreated and at times made to feel that because I am woman, this is just something that should be expected. This is a result of a lack of knowledge.  This disease is highly misunderstood and that has to change.  No one should suffer through daily life without help or understanding.  This disease can be very debilitating and it is extremely painful.  I, as well as many other women want to be productive citizens in society who can function normally because we receive adequate medical attention.  We want to continue our educations, keep plans, work productively, etc. but with this disease there are times that these everyday tasks are not possible. 

I will be joining many women from across this nation in Washington, D.C. on March 13, 2014 for the Million Woman March for Endometriosis to help create the change that has lacked for far too long.  I march in hopes to raise awareness and for future women and girls so that they will not have to suffer in silence as so many have.  The goals of this march are to unite those with endometriosis and their supporters to take a stand against this disease that has been misunderstood for so long.  This march will also educate others by raising awareness and letting this disease and its effects be known.  We hope to encourage education and training in the medical community in order to promote early detection and improved treatment.  Finally, this march will create change.  We want a cure and to develop non-invasive diagnostic tests.  Currently surgery is required to diagnose endometriosis.  We want improve screenings and work with government to allocate funding for this disease.  

I hope you can join me in Washington, D.C. on March 13th as my representative and as individual who cares about women’s health.  I would be proud to march with you as you show your support and help millions of women around the world.  For more information please visit http://www.millionwomanmarch2014.org/

Thank you for your time and kind consideration.

Sincerely,

Krystal Agic

 

So off they go to spread awareness and inform others!

What ‪#‎endomarch‬ means to me personally..

Today I would like to let you know why this movement (Million Woman March for Endometriosis - MWMFE) is so extremely important to me.  I have suffered from Endometriosis for quite sometime now. I began suffering from it as a young girl at the age of fifteen, and was diagnosed at seventeen.  I have been surviving this disease for 20 years.  Being diagnosed with an invisible illness is horrible, but being diagnosed with one that has no cure is simply devastating.  I have lived with a sense of hopelessness since that diagnosis. I felt that this was a disease that I would suffer from as long as I live.  I felt there was no hope because most people don't even know what it is or that it even exists, and unfortunately most doctors don't understand the disease or know how to treat it effectively. Learning of this march sent joy throughout my entire body!  I'm not sure that there are words to describe the flood of hope that rushed through me!  I am forever grateful to the team who put this magnificent movement in motion.  I know now that we are going to find a cure, and that when people hear of endometriosis, they will know what it is.  We will not suffer alone in the darkness anymore! We will end the silence and finally be understood.

Currently the only treatments for endometriosis are surgeries, hormonal treatments, and pain medications to help deal with the pain.  Hysterectomies are commonly recommended, but this is not a cure or fix in the majority of cases.  It requires a very skilled excision doctor to make a hysterectomy successful, and unfortunately there are very few of them.  You see if endometriosis has implanted anywhere in your body and it isn't completely excised, it will continue to grow and feed itself. Contrary to many beliefs endometriosis does not need your ovaries to produce estrogen for it to grow, because it produces it's own.

Being diagnosed at a young age was devastating, not only to myself, but to my family as well.  I had been seeing a doctor from the very beginning of my menstrual cycle, I went in every month in agonizing pain.  The doctors told me that periods are sometimes really painful and that I had a low tolerance for pain.  I was made to feel that I was exaggerating, when in fact I felt as if my insides were attacking my body.  They would send me home with Naporoxen and I would cry and lay in the fetal position for days.  Periods were long, never less that seven days and some up to fourteen.  Nothing helped, but a heating pad and lots of meds would sometime take the edge off.  I would pray to God for it to end, I was in extreme pain that physically made me sick, fevers, vomiting, fainting, etc.  I continued going in every single month and finally I requested to be sent to another OB/GYN  in a larger city in hopes they would have more knowledge or technology and possibly could help me figure out what was wrong with me.  I knew at sixteen that something was really wrong.  I saw a gynecologist in Charlotte, NC who after the first visit said she thought that I might have endometriosis. She explained what it was to my mother and me, which didn't explain much at the time.  She scheduled me for an emergency laproscopic surgery and I went in the following week and the diagnosis was confirmed.  I was diagnosed with Stage IV endometriosis, during this procedure they found that my fallopian tubes were completely sealed shut with endo and scar tissue.  I was told that I would never, even with medical assistance be able to conceive a child because there was significant damage to all my reproductive organs.  This news was devastating.  My bladder and intestines were significantly affected as well.  I did later conceive a child which was a huge surprise as you can imagine, she is my miracle baby (She's 12 now, so I guess she isn't a baby, but she is and will always be my baby). I am one of the lucky ones who were able to conceive despite the odds against my body. Throughout my journey with endo, I have had many surgeries, hormonal treatments (side effects made things worse in most cases), and thousands upon thousands of dollars in doctor bills and unsuccessful treatments.


I'm getting ready to celebrate my 35th birthday and I still suffer immensely, but now I know that there is hope, and that does make it a little more comforting.  Through this experience I have become a Precinct Manager for the state of North Carolina, and I'm honored that I can help make a difference, not only for myself, but for all the others who suffer. I also march for the women and young girls who will one day stand in the unfortunate shoes that I have stood, and for them it won't be so hopeless. 

This march means the world to me!  It means that someone cares, that someone took the time to say "These women and girls need our help" and for that I am eternally grateful.  It means that we may not have to suffer our entire lives.  It means we will not continue to be misunderstood and judged unjustly. It means HOPE!  I will stand united with women like me and we will make a difference, and for that, there simply aren't enough words to say THANK YOU! 

For more information on the march please go visit http://www.millionwomenmarch2014.org/

Million Woman March for Endometriosis, Bloggers Unite! Week 1...

 

Hi, I'm Krystal!  Endometriosis affects millions of women, and I'm one of them. 

 I am really excited about the Million Woman March for Endometriosis (MWMFE) and will be sharing information regarding this wonderful upcoming event and information about endometriosis.  It's time to Empower, Educate, and Effect! 

What:  Million Woman March for Endometriosis is an event that is scheduled to occur in dozens of capitals around the world to help raise awareness about endometriosis.

When: Thursday, March 13, 2014

Who: Dr. Camran Nezhat, and his team have coordinated this event.  They have recruited volunteers from all over the world to work together to make this event a success.  Some of our other co-sponsers that we are excited to have on board are: 
The American Society for Reproductive Medicine (ASRM)
The American College of OBGYN (ACOG)
The Society of Laparoendoscopic Surgeons (SLS)
The World Endometriosis Society (WES)
American Association of Gynecologic Laparoscopists (AAGL)

American Medical Association (AMA)
World Symposium on Endometriosis (WSE)

Where:  Demonstrations will take place at the same time throughout the world in different locations.  I will be attending the event in the United States, which will take place in Washington, DC.
Other international demonstrations will occur worldwide in dozens of capitals, including Amsterdam, Belfast, Berlin, Brasilia, Buenos Aires, Copenhagen, Dublin, Helsinki, Kingston, Lisbon, London, Madrid, Oslo, Reykjavik, Rome, Stockholm, and Valleta.  Visit the website http://www.millionwomenmarch2014.org for more location information.

Why:  Endometriosis is a disease that effects 1 in 10 women and girls. Most receive inadequate care and misdiagnosis's for many years due to a lack of education and awareness throughout the medical community, as well as in society.  Endometriosis effects and in many cases destroys women's reproductive organs, but it can also effect many other organs causing irreversible damage to the lungs, liver, heart, eyes, kidneys, brain, bladder, bowel, diaphragm, nerves, and muscles.  We must create awareness so those who suffer from this disease no longer have to suffer in silence.  We also need to educate our health professionals so that women who suffer can find adequate health care.  I am in hopes this will lead to more research and spark the finding of a cure!

How:  You can REGISTER to attend the March! Contact a Precinct Manager or Country Captain to see what is happening in your area.  Please join us in spreading Endometriosis Awareness!

I am a Precinct Manager for North Carolina, feel free to contact me with any questions you may have.  I would be happy to help connect you or answer any questions you may have.  Email me at endomarch.northcarolina03@gmail.com

I hope to see you in Washington, DC on Thursday, March 13, 2014!

Please visit http://www.millionwomenmarch2014.org/ for more information