PLEASE READ THIS POST!

I want everyone to read this post and I think it is imperative. 

If you knew there was a disease affecting millions of women, but no one would talk about it,

would you help???

There is a disease affecting 176 million women, but most people have never heard of it.

How does this happen?

It's because many find the topic of this disease uncomfortable.

For the sake of these women, please educate yourself so that you may be able to help them.

At the rate of 1 in 10 women suffering with this disease, you most likely know someone who suffers with it.

You may not even be aware of it because many women with this disease are embarrassed and feel misunderstood, so they don't discuss it openly.

One of these people could be your mother, grandmother, sister, aunt, daughter, or any loved one or friend.

This must stop, millions of women are suffering a pain many have never experienced, 

and they are ashamed. That doesn't seem right to me.

It doesn't seem okay to me that 176 million suffer with this disease and most people have never even heard of it or know what it is. How can this be?

I want this to end, so it is my request that you please educate yourselves so that if you are ever faced with this disease or know someone who is, you will have some understanding.

This also needs to happen so these women can receive the help and 

medical treatment they desperately need.

This disease is Endometriosis.

Here's the part no one wants to hear, I'll keep it brief and we will move on to how you can help.

Endometriosis is pronounced END-O-ME-TREE-OSIS

Endometriosis occurs when endometrial cells (cells from the lining of the uterus), exist outside of the uterus. They can be found on the outside of the uterus, ovaries, fallopian tubes, or on surrounding organs in the abdomen such as the intestines, bladder, appendix, or rectum. 

In rare cases endometriosis has been found on the lungs and brain.

 Think of roots on a plant, how they reach out and grow, endometriosis is a lot like that. 

It causes lesions and scarring wherever it is located and with all of this comes severe pain.

There are four stages of Endometriosis

Stage I: Minimal

Stage II: Mild

Stage III:  Moderate

Stage IV: Severe

Symptoms of endometriosis vary but can be:

Fatigue

Pelvic Pain

Severe Cramps

Nausea &/or Vomiting

Chronic Lower Back Pain

Diarrhea &/or Constipation

Pain with Sexual Activity

Infertility or pregnancy loss

Headaches

There is no known definite cause of endometriosis and there is NO cure.

To confirm a diagnosis of endometriosis, a procedure called laproscopic surgery would need to be preformed so that a biopsy of the tissue could be tested.

This surgery is minimally invasive.

Treatments of endometriosis include:

Birth Control

Other horomonal therapies (use caution and research)

Diet and Exercise

Excision Surgery

The best known treatment as of now is excision surgery, not ablation. 

Excision surgery offers a low recurrence rate.

In the past, a hysterectomy was thought to cure endometriosis. This is one of the biggest misconceptions regarding this disease. This should not be considered a cure!

 Now you have an understanding of what Endometriosis is.

There are many misconceptions regarding this disease and this has to stop! If you do not have accurate knowledge of endometriosis, please do not suggest to others things that you may have heard.

This could lead a person in the wrong direction, and only continues the confusion regarding this disease.

My personal experience with this disease has led me to advocate for others and myself.

If you are a sufferer of this disease, you will have to educate yourself and stand up for your health.

Unfortunately, even many physicians are not well informed regarding this disease, again due to 

misconceptions and misinformation.

Let's all stop the misinformation and start educating ourselves and others.

176 million women are relying on it!

I was diagnosed as a teenager. I went into surgery because I knew something was not right.

I knew that I shouldn't hurt so badly. Please listen to your body.

I was diagnosed as stage IV.

Stage IV is severe and means that it is widespread.

I suffered endlessly with this disease, I tried birth control, injections of a medicine that was made to treat prostate cancer, very bad drug. In my opinion this is an unsafe drug and should not be on the market.

If you choose to use this treatment, please take caution and educate yourself.

I had multiple surgeries, all to no avail. 

The pain with endometriosis is like no other I have ever experienced, including childbirth. 

This pain is like what I would imagine being shot feels like. It feels like something is inside of you slicing you into pieces. The pain is ruthless and inhumane.

It is hard to get under control even with some of the strongest pain medications.

This disease stole many moments from my life, many special events, many memories that should have been made. It stole my well being, at times my emotional stability and finally it stole some of my organs.

This disease is serious and should be treated as such.

I recently was extremely fortunate to go to one of the few surgeons that are skilled enough to excise endometriosis, currently there are not very many at all. Less than a dozen in the USA.

I went to Atlanta, GA where I was operated on by the admirable, Dr. Ken Sinervo. 

I am in less pain recovering than I was going in, so I am very grateful. 

Before going into this surgery I knew that this disease had progressed and was doing so rapidly.  Things were never right, but I knew that it was far worse. I was so afraid because I thought it was getting the best of me. I honestly at times wondered if it was going to kill me. There were times I was even afraid to fall asleep.

During the surgery Dr. Sinervo found that many of my organs were bound to each other, several had to be dissected apart. They actually had to correct my anatomy before they could proceed with my surgery. My appendix was ruined, obliterated by endometriosis and had developed a tumor. I am so thankful that it wasn't cancerous. My ovaries were both mutilated, one with a mass the size of a babies head. It had been pressing on my other organs for a few months prior to surgery causing even more sever pain than I had already been experiencing. My urethra was attached to my abdominal wall and had to be dissected away so it would be able to function properly. This disease was on almost all of my abdominal and pelvic region wreaking havoc on my life. 

I am all better now with less than a 1% chance of a recurrence, I am blessed.

This disease is a serious condition!

When I say that those of you who were gracious enough to reach out and help me in any way saved me, 

I want you to know that you really did.

It wouldn't have been possible without you all and your support.

You made a difference, you changed my life.

I pray that God blesses each and every on of you and know that I am so grateful and that 

you mean the world to me! 

If you or someone you know has or suspects that they may have endometriosis and would like more information, please share my contact info with them.

If you have endometriosis and you need more information or need support, please reach out. There are support groups and many people who will help you.  If you need someone to talk to or just some support, please feel free to reach out to me. I completely understand, no judgement.

Thank you to all who took the time to read and educate yourselves! 

 

 

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

30 days of Thankfulness

30 Days Of Thankfulness...
Thanksgiving is soon approaching and as this is a time to give thanks, I thought that I would share daily something that I am thankful for over the next 30 days. I am also doing this on Facebook, but instead of a status update, I thought it might be nice to take the time to really embrace and take some time out of each day to reflect and appreciate the things in my life that I am truly thankful for, things that God has so graciously blessed me with. These are things that make my life extremely special.

‘Enter His gates with thanksgiving and into His courts with praise! Give thanks and bless
His name for the Lord is good; His mercy is everlasting; His faithfulness and truth endure to all generations’.
Psalm 100:4 & 5

~Day 1~
Today, I am thankful for the blessing of my daughter. My miracle! Her existence has brightened my life in countless ways.

As a teenager I was diagnosed with Endometriosis, which caused me to be infertile. I was told there was no chance, even surgically that I would ever conceive a child. This was difficult for my family, and myself to accept at first, but just simply became a harsh reality. Years later, after meeting and falling in love with another one of my blessings in my life, we we're expecting! This also came as quite a shock, considering this wasn't physically, or surgically possible, but of course, became the best thing to ever occur in our lives!
Explanation:
So not only am I thankful for my daughter, but I am thankful for the miracle it took to make me her Mommy!

On that July day, selfishness, and irresponsibility was gone, and in it's place was joy, and a love that I never knew existed. A love so strong that is indescribable. So today, I take the time to appreciate and respect the blessing of my daughter and the opportunity God gave me to be her Mommy and experience a love like no other!

She is my sunshine!

Random Ongoings....

So, it has been a while...
Guess I haven't got into the swing of blogging yet, I'll get there, hopefully! Things have been either super busy or out of commission in our home lately (speaking on my own behalf). I homeschool my daughter so naturally August became overwhelming with preparations for our upcoming school year, and that is a pretty continuous task throughout the year! I have found myself already longing for a holiday! ;) Teaching and staying on task keeps me really busy throughout the week, and doesn't leave as much time for my other tasks usually, but I manage. So my lack of blogging, I will blame on time management for now! ;)

Onto other happenings,
I have endometriosis, (diagnosed 16 years ago) which equals a short walk through woman-hood HELL once a month! Emotions all over the place, frustration, continuous pain, tears, agony, feeling trapped inside of a crazy body. MISERY. Not only do I feel sorry for myself at this time, but more so for all those who have to deal with me!!! YES, it can be that bad!
NO EXAGGERATION NEEDED!
I can't help myself.... This is no pity party, just venting I suppose! So last weekend I spent several hours in the ER due to pain that had me totally dysfunctional, but they were able to help me with pain management. I have got to start exploring and researching my options to rid myself of the wrath mother nature seems to find me the perfect candidate for!

On a brighter note, our family has purchased a new car! We are the proud new owners of a sweet Dodge Caliber. We love it! I thoroughly enjoy it! Music is a very important and needed element in my life, and it seems to have endless options to jam, so ROCK ON! Of course, we have our AM/FM stereo, but then there is a 6 cd/dvd player, an AUX adapter for my MP3 player/smartphone, and XM radio! So I am in music heaven in my car, on top of a banging system! Great stress relief for me, not to mention fun! So, if you happen to drive up to a traffic light with a sweet YOUNG LADY jamming next to you, having too much fun, singing badly LOUD, and dancing, it could very well be me! It's ok to laugh, I laugh at me too!
There are many other things about the car I love also, it is super roomy, economical (very important these days), sporty & classy at the same time, awesome interior, & very cool displays, not to mention super great get up and go, and brakes! LOL! I love it!!!

I have been really busy practicing the four letter word lately!!! Alot of it going on! It has it's ups & downs for sure! Sometimes, It makes me wanna scream loudly and pull my own hair!!!
HOLD IT! Where is your mind going with this!!! Unfortunately, it isn't what you're thinking of!!! It is the dreaded DIET! For most of us, it isn't easy to keep a body in great condition without alot of work &/or discipline, and sometimes if you're anything like me, it can easily get out of hand. So lately, I have been getting busy getting myself back in shape and healthy! So far so good, but still a work in progress! We all fall down occasionally, what matters is that you get back up!!!

For now I'm gonna end this scattered session of my random topics and enjoy a little TV time with the my wonderful family!