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/
Monday, January 20, 2014
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
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