My life with Endometriosis

I have suffered with endometriosis for 20 years, unfortunately,

 I have lots of personal experience with this disease and this post is just a little about my experience.

How did I know I had Endometriosis?

I didn't know at first. I know that I had the most painful periods of anyone that I knew. Tylenol couldn't even begin to touch the pain. I tried all over the counter medicines, but none helped. I began spending hours in the doctors office each month, 
as well as the Emergency Room.

After a year of horrid periods, which began directly as soon as my first cycle, I went to Charlotte NC to meet with a doctor who mentioned that she thought that I had endometriosis.  I was scheduled for emergency surgery and was diagnosed the following week. I was one of the lucky ones as far as diagnosis goes because the average time for women to get a diagnosis is 6-10 years.

 

What did they find?

During my first "lap" (laproscopic surgery) the found lots of endometriosis implants. This is where endometriosis is somewhat rooted, for lack of a better word. It grows and feeds on estrogen. (think of little shop of horrors- you know, "feed me Seymour") . It feels like I have a monster with a chainsaw inside of me at times. 

  I was diagnosed with Stage IV Endometriosis which is when advanced endometrial tissue is not only on reproductive organs, but is also on other areas of the body. For more information regarding stages of endo, click here.

It spreads and reaches to other areas and attaches itself on other organs and/or parts of the body. (think of stepping in chewing gum on hot pavement, when you life your foot, it is stringy and attached to both your shoe and the pavement.)

During my procedure they found endometriosis on my ovaries, uterus, intestines, bladder, and a many other places. I was also told during my first lap that I would never be able to conceive a child due to the damage my reproductive organs had already incurred.  Following a test they do by running dye through your fallopian tubes to see how open they are, they discovered that mine were sealed shut with scar tissue. I did later conceive a child. I had two pregnancies actually. I had a beautiful red headed, blue eyed precious baby girl! She is 13 now. Don't give up, Miracle babies do happen! I had a miscarriage in 2007 

which we feel was due to endometriosis.

How I felt following my diagnosis?

Following my diagnosis, I was shocked and I didn't know what having endometriosis meant. I was somewhat sad, but mostly confused. I remember wondering if it could be fatal? My doctor told me that some women have it and it just causes painful periods and that I would need to take hormonal treatments to try to keep it under control. At 16 I began taking birth control. The doctor said that I would need more surgeries to "clean up" the endometriosis. Overall the doctor didn't act like it was much of a big deal at all. I left with little information, other than I would suffer with this and there is no cure. There were no support groups at this time, or at least none that I was aware of.  There was also little information about endometriosis. It was looked at as basically a cut and dry diagnosis. You have it, deal with it, no cure. 

What is life like right now?

Click here to read my other blog post that explains "my now".

If you have endometriosis, suspect you may have endometriosis, know someone with endometriosis, need support or have questions, please feel free to contact me.

You can find contact information in the right column. 

I would be thrilled to help you. 

  Symptoms of Endometriosis  

• Severe Pain and Cramps 
• Backache                        
• Painful intercourse            
• Painful bowel movements 
• Fatigue                            
•  Constipation or Diarrhea 

For a more detailed list of symptoms click here.

About Endo...what?

Endometriosis

What? What did you say?,

What is that?,

Endometriosis is a word that most people either 
reply or respond 
seemingly creep-ed out &/or uncomfortable.
 I hope to help change that.

Some of those who are aware of it, are unfortunately usually misinformed, which leads to misunderstanding.
Misunderstanding leads to the spread of misinformation. This isn't helping anyone. 

This is why awareness of Endometriosis is so important. More important than you probably realize, but I'm going to try my best to change that! Please hang in there, don't close the window. You really do need to know this information. Endometriosis can affect any female. It could be your mother, sister, aunt, daughter, cousin, girlfriend, your wife, or simply someone you know.. Upon this occurrence, I hope that you would want to be correctly informed and hopefully understanding.

   

The confusion of the topic or lack of knowledge of endometriosis is due to the lack of awareness and part of that is because it isn't a comfortable conversation to have. We must all inform ourselves so those who suffer, they can be understood and not suffer alone.

Let's start with defining Endometriosis,
 Endo (Endometriosis) as defined by the Center for Endometriosis Care, is when tissue similar to (but different from) the lining of the uterus (endometrium) is found thriving elsewhere in the body - usually in the pelvis, but sometimes even in 
remote locations (even the brain, though this is extremely rare). 
There are great answers to FAQ as well as lots of other information about endo on the CEC's (Center for Endometriosis Care) website.
Click here!

There are four stages of endometriosis 
This chart explains how the characteristics of each stage. 

Stages of Endometriosis

 

 Symptoms of Endometriosis  

• Severe Pain and Cramps   
• Backache                              
• Painful intercourse             
• Painful bowel movements 
• Fatigue                                 
•  Constipation or Diarrhea  

For a more detailed list of symptoms click here.

I hope that we all can educate ourselves and others about Endometriosis.

Even though we live in such an advanced society, people still get uncomfortable speaking of something that we are all aware of and is perfectly natural to occur. 

Some people are more uncomfortable discussing periods than they would be arriving to the scene of a horrific accident. 

So sad, but very true.  People get very squeamish and most do not want to discuss it.

We as women are taught that it is to be discreet and at times almost as if we should be ashamed or embarrassed by this monthly occurrence of being a female.

I find this ridiculous, ignorant, and taboo. 

If you aren't aware, which I'm certain you are, every female experiences menstruation. This includes people you love and if it weren't for this "disgusting" topic, you wouldn't exist. 

It's ok for it not to be an exciting topic or one that we feel like shouting about, but it has to become more acceptable and somewhat of a comfortable topic, and I'll be happy to explain why that is. 

There are many issues including endometriosis that people suffer with, and because of this stigma, many girls and women find it difficult to discuss therefore, illnesses remain unknown and/or do not find treatment soon enough, this is unacceptable and is occurring because many are ashamed. It's ridiculous.

You can find many resources and information on The Center for Endometriosis Care's website.
Click here for resources and articles!
 

Endometriosis Myths
Unfortunately, there are many myths about endometriosis. The one I hear the most is "A hysterectomy will cure you".  This is just misinformation.  If you have heard this, please inform yourself so you do not spread misinformation. 
PLEASE READ THIS ARTICLE SO WE DON'T CONTINUE TO MISINFORM.
 Here is a great article called, 
Myths and misconceptions in endometriosis, 
written by  Ros Wood, Heather Guidone, and Lone HUmmelshoj

The Current Happenings of Me...

Today's entry is a bit of a tough one for me, but needs to be discussed so it can be more comfortable for the person(s) who may experience a similar situation at some point, that person could even be you. I certainly hope not, but you never know. 

I'll begin with what is my "Now".  

The current happenings of me are not pretty, it's actually really just awful.
It is seriously one of the darkest times in my life. We've all experienced a hard time, but this so much more.

I'm not seeking pity, just stating how things are, It is what it is, right!?!
There is a silver lining, I'll get to that soon.

I suffer from stage IV Endometriosis, which needless to say is nothing short of terrible to say the least.

If you are uncertain of what Endometriosis is or would like more information

Click here!

So currently I am dealing with severe endometriosis, which causes a multitude of symptoms which include: fatigue, severe pain, lower back pain, bowel issues, and many more.

Not only am I dealing with Endo (Endometriosis), but I am dealing with so many other things and details.
In mid 2014 in early summer I found out that I have a huge cyst on my right ovary that will most likely need to be surgically removed. This causes me tremendous pain, and puts a huge strain on that organ. This isn't the awful pain like when you stump your toe, it's actually 100 times worse. Sounds unbelievable I know. This pain will take your breathe, take your balance, and make your body bend in ways that are not normal.  I have fallen to my knees, unable to move, vomited, and passed out due to this. Somewhere around this time is when I began needing heavy pain medicine just to function and be able to get up and do daily activities.
I knew at this time that I could no longer fight this horrid disease. It was taking it's toll on my body and is now claiming my organs.

I knew it would happen one day...
It is time to schedule a very serious surgery and reclaim my life. My body is losing the fight.
I have so many issues with this. I am unsure of why, but I will admit that I am having a very difficult time.
I know women have hysterectomies all the time. I'm sure some of it has to do with losing parts of my body.  It is just so unfair. I am not only having a hysterectomy because a hyst alone will not "cure" or help very much, because I have widespread endo. I have Endo on my ovaries, uterus, bladder, bowels, and in many other locations in my abdominal and pelvic area. All of these areas would need to be addressed to prevent growth of endo later down the road.  *Endometriosis lives off of estrogen, many believe by taking ovaries, they take estrogen away and endo will die.  This is not the case in severe cases.  Endometriosis creates it's own estrogen. It's not the amount the ovaries produced but estrogen is still present, therefore there is still growth and complications.  Estrogen is also found in many foods*  To properly be treated in my case, I need excision surgery to remove the Endometriosis so that my other organs can be freed of the disease.

I spoke with the surgeon.
That was very exciting, after all he will be one of my heroes. He is extremely skilled and only specializes with endometriosis. His name is Dr. Ken Sinervo. He practices at the Center for Endometriosis Care. There are only a handful or two of surgeons currently in the US that are skilled enough to perform this type of operation successfully. He explained to me from my medical records and symptoms what types of procedures we will begin with, and once inside he will address other areas as needed. Currently there are 5 known procedures ahead of me. He tells me that my surgery will last at least 6 hours, but be longer. This makes me extremely nervous. I also learned that I suffer most likely, with adenomyosis, this causes sever pain involving the uterus. FYI- My husband, Jacob will keep everyone informed until I am able to post.

Over the past few months I have had numerous ER and doctor visits due to unbearable pain.
After several visits, I find out that I now have another huge cyst on my left ovary.
This revelation was so disheartening, as I was in high hopes of being able to salvage my left ovary if possible to balance hormones.  This was it, I would have to lose it as well. 

My feelings are so unlike me. I'm not a resentful or angry person. I try to be upbeat and positive, but currently I am having such a terrible time. I have never felt so helpless in my life, so fragile and vulnerable.
I do not like it one little bit. My hormones are raging due to the strain that both ovaries are now experiencing. I'm in constant pain and on medications, this makes me irritable at times.  So put that with a hormonal imbalance and that is a dangerous concoction.  I am saddened that my body is so broken. I hate that despite the fact that I knew it would happen one day, it hasn't made it any easier. I am devastated. I'm not trying to be dramatic, but I feel so jaded. I don't want to lose organs. I feel that I have failed, I've lost the battle. I know that truly isn't the case, but I can't seem to help the emotions regarding it. This is hard. This is sad.

On to more feelings, lucky you ;)
I have had to set up a crowdfunding account. Regardless of how wonderful that opportunity is, it is still so humiliating to some degree to expose yourself, the parts of yourself that you aren't happy or proud of.   How awful it is to not be able to take care of yourself. I do not want anyone's pity, I only want understanding and awareness. I have insurance, but because I am going out of state and to a specialist, there is a lot of expense up front.  This isn't even counting the expense of travel and needing to be in Atlanta for several days. It's quite costly.  I will also get smacked with the remainder of bills after the insurance does their thing.

 Over the last year, my medical bills are nothing short of ridiculous, but that is nothing new with this dreadful disease. I've had issues with medical bills as longs as I can remember. 
This disease is expensive.

I am a nervous wreck and I am so scared. I am told by my doctor to avoid stress at all costs. I've been prescribed two types of anti depressants, one is supposed to help me rest. I know we can all use some help sometimes but I truly hate having to medicate myself with chemicals and drugs. It is helping some, I suppose but I would really hate to see me right now without them. Between nerves, hormones, and severe pain, I honestly feel like I just can't cope at times.  I am not this person.

It is critically important for people to recognize endometriosis as the serious disease that it is. Endometriosis will steal me of my organs, it has caused me to have multiple surgeries, and I'm awaiting a huge one. It has stolen birthday parties, holidays, and lots of special occasions that I should have been a part of. It has stolen memories and so many days of my life. It has taken jobs and opportunities. I plan my life around a calendar that I know without a doubt 7-10 days of each month will be a living hell inside of me.
Endometriosis will try to take my life. Slowly it will attach itself to my organs and insides, where it has made it's home. It will invade areas of my body and implant itself as if it has found a new land.  It will squeeze my organs, it will cut of blood flow. My body will scream for relief but that is so hard to find. Heating pads, medications, narcotics, and scalding hot baths/showers
help, but still the pain will remain.
 Any relief is temporary and short lived.

The current happenings of me are not pretty, it's actually really just awful.
BUT SOON THAT WILL CHANGE.
You will read a post before long about one happy lady. 
 She will be free and She is Me.
I will have a life changing surgery, in just a short number of days (12 to be exact) It will be thanks to so many people who cared enough about me to help. I had to go out of my comfort zone, and when I did I found the most amazing people. They are the people who truly care about the being of my life, my existence. There are still wonderful people in the world who care. I was beyond touched by you all, a place in my heart is reserved for each of you. Complete strangers reached out to help me. My heart is so full of thanks and joy.
The thing that I most dreaded to have to do, to ask others to help me in ways that I couldn't help myself, turned into so much love. Humiliation was turned to an outpouring of love and support. I am honored to know you all. There are not enough words to express my gratitude.  Soon I will return to a time before pain, I'll feel 14, ;) I will again be able to exercise, I will be able to exert myself and not have to rest for days. Overdoing it won't be so easy! Get ready everyone, positive and upbeat Krystal is coming back!

Endometriosis awareness will forever be very important to me, This disease needs awareness so that young girls and women don't have to suffer unnecessarily as many others and myself have. If you or someone you know may be experiencing anything similar to Endo, you are concerned, or would just like more info, Please feel free to contact me. If you have endometriosis, I know of many support groups and other women who would love to be there to support you through your journey, me included. It isn't easy and you are not alone.

The Silver Lining...
The silver lining for me is you, the one's of you who have cared enough to follow my story and support me. You have no idea how amazing you are, I never imagined that I could experience this wonderful feeling of an outpouring of support and love.  I know that I am loved and I want you to know that I love you!
Thank you from the bottom of my heart! 

EndoMarch 2014!

This post is crazy overdue!  Almost a year to be exact.  Geez!  I want to tell you all about a wonderful movement by the name of The Million Woman March for Endometriosis, better known as The EndoMarch.  

As stated in my previous posts, this movement has been long overdue and being able to participate in this event was life changing! We arrived in Washington D.C. the day before the march.  Can I just say that driving around D.C. is not a good idea!  We didn't realize what we were getting into and we actually wound up in the district and Oh my Goodness!  Never ever attempt it, you've been warned.  Enough about that, let's get to the wonderfulness that is The EndoMarch 2014!

The 2014 EndoMarch took place in Washington D.C. at the National Mall on March 13, 2014

 I was one of the Precinct Managers for North Carolina. I was honored to help, it truly was so rewarding to help this movement grow.  I met many women with endometriosis that live in our state.  It is not very often that you meet people who are going through and share the same experiences with endometriosis.  Maybe because many don't talk about it, because we have been taught to be ashamed and/or embarrassed, and sometimes that lesson comes from society. Through this event I have met some amazing women, we call each other endo sisters. We share a bond through our situation and suffering that many don't understand.  I loved meeting them and putting faces with names and seeing our work come together to bring awareness to end endometriosis. It was nothing short of amazing.  Many of these women will always hold a special place in my heart!

This is Cherrelle, of Her Yellow Ribbon (HYR) and I.
We were two of the precinct managers for NC

Please visit HerYellowRibbon at:
http://www.heryellowribbon.org/

On March 13, 2014 the day began with everyone meeting and registering at the at the Andrew Mellon Auditorium.  There was an educational symposium held here following a nice breakfast. The symposium featured some wonderful speakers including Dr. Nezhat, who founded this event with his siblings who are also in the medical field.

 

 

 There are some amazing photos of the Educational Symposium captured by Audrey Michel at 

 http://audreymichelphotography.pass.us/mwmfendo-endomarch2014/c-9xDcx1050893

We then all took to the National Mall! It was bitterly cold that day, I don't think I have ever been so cold, and I don't think I would have remained in the cold for many other reasons! We heard various speakers which included, The Nezhat family,  Stephanie March, Mika Brzezinski, and many other medical professionals and some fellow endo sisters! Sheryl Crow preformed for us and concluded the ceremony.

More of the outdoor rally photos captured by Audrey Michel can be found here:
http://audreymichelphotography.pass.us/mwmfendo-endomarch2014/c-VGbmB1050898

We braved the wind and the cold and we marched the National Mall and let Washington know that we demand attention and awareness to this disease. The emotions during this march were incredible. Many held signs and banners, some of  us held hands, all while many of us had tears streaming down our face.  We were no longer alone. We were demanding to be recognized and on that day a sense of hope flooded the National Mall and a change was made that will forever be remembered.

 There are some amazing photos of the march captured by Audrey Michel at
http://audreymichelphotography.pass.us/mwmfendo-endomarch2014/i-9mRjm89400556

Following the march, we joined together back at the Andrew Mellon Auditorium. We enjoyed some wonderful food and danced together.  There was an acknowledgement of the "Endo Hero of The Year". I was one of the many recipients and I am so proud! We chatted and got to know each other better! This was a wonderful experience and I encourage everyone to help us. Be a part of the change.

 Some after party photos captured by Audrey Michel can be found here:
http://audreymichelphotography.pass.us/mwmfendo-endomarch2014/c-QpT4g1050962

Too many women are suffering this disease for it to remain silent. Silence is causing suffering. 

You should not be ashamed, or embarrassed if you suffer with this disease. It isn't your fault or caused by something that you did. You are not alone. It is not all in your head.  It isn't just extremely painful periods. A hysterectomy alone is not a cure.  If you feel something isn't right, please speak up. Reach out, there are so many of us that want you to know that you are not alone and we will help you in anyway that we can.
 We understand.

Join us and help us bring awareness to endometriosis.  I will always advocate for Endometriosis Awareness and for those who suffer with it. I do not want any other woman or girl to suffer the way I have.  I will not sit back and let others suffer and  feel alone and ashamed. No more silence. 

I do not care it is an uncomfortable conversation or topic, it is one that must be had. 

Get out of your comfort zone and let's get real! 

There are some wonderful images that a very talented endo sister captured, her name is Audrey Michel. She is also the founder of Rewired Life and is soon to release a book! You can view some of her work here, 

http://rewired-life.com/million-women-march-for-endometriosis-photos/

The 2015 EndoMarch will be held in Washington, DC as well as in Palo Alto, C.A. on
March 28, 2015
 More info can be found here:
 http://www.endomarch.org/
Feel free to email me to endomarch.northcarolina03@gmail.com

A couple of cool candid photos of my family and myself captured by Audrey Michel

 

I want to thank everyone who was a part of creating this event, the ones behind the scenes, the paperwork, all the precinct managers, the journalists, the participants, and everyone person who was involved at any moment!  You all helped make a tremendous difference in the Endometriosis community. Something very important happened on that day, change began.

Again, thank you.

The EndoMarch is Near!!! - Week 7 Bloggers Unite #EndoMarch2014

The Million Woman March for Endometriosis is 10 days away!  I finally got our room booked and we got a great deal!  YAY! 

I'm feeling very excited and slightly nervous!  I'm really not sure what to expect, but I think it is going to be a moving experience and a lot of fun!  I am looking forward to meeting women who I've become friends with online through this experience.  I also look forward to being surrounded by people who understand endometriosis and to be embraced by the people who support us!  This is truly almost like a dream come true to me, This event just flows with HOPE and joy and I couldn't be more thankful for this opportunity!

I'm also going to get to see Sheryl Crow in concert!  WHAT?!?! That's right, don't be jealous, come march with me!

Now, the nervous part! I have never been to Washington, D.C. before and it seems like it might be a little intimidating...   I am however looking forward to the experience and plan to fit in some sightseeing afterwards.  I am certain overall it is going to be a memorable and moving experience to be surrounded by hope and change! I am thrilled to be a part of it!