Saturday, March 14, 2015


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:
Pelvic Pain
Severe Cramps
Nausea &/or Vomiting
Chronic Lower Back Pain
Diarrhea &/or Constipation
Pain with Sexual Activity
Infertility or pregnancy loss

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!