My Hidden Disease

The month of March is Endometriosis (Endo) Awareness Month, and I thought, there is no better time for me to open up about the disease which has accompanied my life for over 15 years.

en-do-me-tri-o-sis
a condition resulting from the appearance of endometrial tissue outside the uterus and causing pelvic pain.

For all of you reading this who suffer from Endo, this is the definition. Can you believe that? If I had the opportunity to change the definition, this is what it would say:

A condition resulting from the appearance of endometrial tissue outside the uterus that violently and aggressively sticks to the rest of your organs, joins them all together and reeks havoc on your reproductive system. Oh and don’t forget you will have a chainsaw working on overdrive inside your abdomen until you finally decide to have a hysterectomy, and free yourself from hell on earth which occurs each and every single fucking month.

What do you think ladies? Does that sound better?

Don’t worry there is hope, and I will get to it.

One out of ten women gets diagnosed with Endo. I believe this number would be significantly higher if women were actually properly diagnosed sooner. On average it takes ten years for a proper diagnosis, and this means most women will see at minimum five doctors before even hearing the word endometriosis.

Dealing with Endo is mentally and physically exhausting. Not to mention extremely inconvenient.

I remember the first time I went to my OBGYN and said, “I think I might have endometriosis.” I believe I was about 20 years old and had been doing my own research. I realized that my pain was out of control and I was slowly beginning to learn that this was not something that the rest of my friends deal with on a monthly basis.

I remember way back then I had canceled plans with a friend and said it was because I had insane cramps. She said, “just take a damn Midol and come out.” Okay, let me get one thing straight, over the counter drugs do NOT work, neither do prescription pain killers for that matter. The only thing that brings any bit of relief is rolling up in the fetal position with a hot pad and howling out in agony.

Accurate right my endo sisters?

Anyway, this is when I realized this wasn’t normal and I had to mention it to my doctor which is when I began my many years of hormonal treatment. Oh, how I would love to go back to that doctor and tell him how he legitimately ruined my life because of his lack of interest in doing some basic research.  (okay thats a bit dramatic, he didn’t ruin it but you get the point). I asked him about laparoscopic surgery at the time, and he said that type of surgery could cause other complications and he didn’t recommend it.

So living in misery and pain for the rest of my childbearing years is recommended?

I said, “but that’s the only way it can be diagnosed,” at which point he said, let’s just deal with the pain with the hormonal treatment. The hormone treatment was not effective in the least, and only caused me extreme mood swings, and absolutely no control over my emotions. This doctor wanted to mask the pain and forget about the root problem, as do many doctors when they are dealing with women who have endo.

We grow up learning to trust our doctors, but we really need to be taught to trust our bodies and fight for our own health, and that is exactly what I did for a long, long time.

Now don’t get me wrong, there are amazing doctors out there, and I found one many many years later, but it took a lot of perseverance, a lot of tears, and a lot of excruciating pain before I met her, and by that point the damage was extensive.

Fast forward to when I met Nick. As I had mentioned before, I was single for quite some time before meeting him and had learned ways of dealing with my endo and managing the days that were so debilitating, but now all of a sudden there is someone there to witness it.

Now what?

I remember it was a week after Nick and I met, we went to Banff. I know I know, this probably wasn’t safe, but I had people on stand by and they knew where I would be. 😉

Anyway, we were laying in bed and (I won’t go into detail because my parents are reading this), but the pain started. At this point, I did what I always do and placed myself in the child’s pose and began to breathe it out. I would flip back from child’s pose to fetal position multiple times, but I just kept breathing similar to what a woman in labor would do.

Nick was mortified, and he wanted to call 911. Aww, I love that man.

I told him I would be okay, and that is the moment I introduced him to what would now be our permanent third wheel.

Endometriosis.

Huh? How the fuck do you even spell that.

Eventually, the pain subsided, and by that time my body was exhausted, and I fell asleep. The next morning I told him all about endo, and his response was:

“I am so glad I am a man.”

On December 18, 2015, I had my first surgery, and I was diagnosed with stage four endometriosis. It was a chaotic mess in there, and I wasn’t sure if I would be able to keep both my ovaries and I was likely going to need a partial bowel resection.

Remember when I said the doctor ten years ago said the laparoscopic surgery wasn’t recommended because it could cause other complications? If only he knew the complications, I had now.

One month after my first surgery I met the most amazing doctor on this planet. I have often referred to her as an angel sent from God. I bawled in her office for over an hour, and she looked me in the eyes and said, “honey, you have seen a lot of doctors haven’t you.” I bawled even more.

We came up with the plan, booked the surgery, and she promised me she would do absolutely anything she could to help Nick, and I have a baby. The only problem was, as you all know, I lost Nick less than one month later.

I just had my surgery a few weeks ago and will meet with my surgeon again on April 18th. I don’t know whats in the books for me as far as my health and whether or not I will ever be able to have my own babies. I don’t know if my pain will go away, or if I will have to have another surgery to remove the parts of my bowel that have been covered in endo. I really just don’t know at this point, and I can’t stress over it. Life is way too short.

What I can do though is raise awareness.

Ladies,

Painful periods are not normal.

Extreme bloating is not normal.

Pain during or after sex is not normal.

Painful bowel movements are not normal.

Extreme fatigue, back pain, and leg pain are not normal.

Uncontrollable bleeding is not normal.

These are only a few of my own personal symptoms that I have dealt with my entire adult life.

So many doctors told me that maybe I just had a lower pain tolerance than most women.

FUCK THAT.

Women with endometriosis have the highest pain tolerance on the scale because they have to. If they didn’t, they would spend a good majority of their lives curled up in bed. There is a reason most people don’t know their friends, sisters, girlfriends, classmates, and co-workers have endo; it’s because we are damn warriors and we hide it well. Also, please remember, that it’s not only adult women suffering from this pain, but it is also our young girls. Our beautiful young girls who are not only going through the stages of life but are now having to deal with such a paralyzing disease that they likely don’t even know exists inside them.

That takes an extraordinary amount of strength and next level pain tolerance.

To the women out there who have been diagnosed with Endo, I see you. To my endo sisters who walk beside me each day, I love you, and I am so blessed to have you in my life. To the young girls who are struggling and aren’t sure why, please talk to someone and don’t stop fighting.

For those with daughters, their pain is not just a part of being a woman.

Know your own body and fight for your health because no one should be 31 years old with the mess I have inside me. I will overcome this as I do everything else that erupts in my life, and I will continue to raise awareness in hopes that this disease will become a priority in the health care system.

If anyone is curious to learn more about endometriosis please contact me and please read my dear friend Aubree Deimler’s book, “From Pain To Peace With Endo.”

This book is brilliant, and I read it for the first time in 2015. I read it all in one sitting and shed a lot of tears. I kept saying to Nick; I wish someone would have given me this book when I was 16. I also remember thinking this poor woman. She also lost a man she loved suddenly. I couldn’t relate at the time and just cried for her as I read this part of the book.

I have been lucky enough to connect with Aubree, and her passion for raising awareness about this disease is admirable. Thank you, Aubree.

“Endo is resilient, and it continues to grow. But women with endo are also resilient, and we continue to fight.” – unknown-

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