Saturday, February 14, 2015

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.

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