Endometriosis. Diagnosis And An Answer To The Pain.

I was standing at the stove, cooking dinner and suddenly I felt this ache and I thought, “Man, here comes my period”.  So I went to the medicine cabinet and grabbed some extra strength Tylenol and went back to cooking dinner.  A few minutes later I was in so much pain I could barely move.  I told Matt I wasn’t feeling well and that I needed to sit for a moment.  I tried to relax and let the Tylenol kick in but within minutes I was curled on the floor in the fetal position.

The only thing I can liken it to is if someone was repeatedly stabbing me in the stomach. “What is this?!” I thought.  Matt, doing the normal thing that guys do when they don’t know how to fix something that’s going on with us said the most ridiculous thing that could have come out of his mouth at that point. “Does it hurt?”  “Does it hurt!  I’m lying on the floor in the fetal position.  Yeah, it hurts!”  That was eight years ago.  It would take almost three years from that day before I received the diagnosis of Endometriosis.

Endometriosis is a disease of the female reproductive system that affects approximately 1 in 10 women worldwide. Endometriosis occurs when the endometrial cells, or uterine lining cells, exist outside of the uterus.  ~Endometriosis Foundation of America

Endometriosis.  Diagnosis And An Answer To The Pain.

Endometriosis is a highly misunderstood disease. As a result too many women go undiagnosed. This is my diagnosis journey.

It took me, 3 gynecologists, almost three years, and continuous suffering before I finally found a doctor who didn’t write my symptoms off as just my body changing.  They didn’t believe me, they thought I was being dramatic and overthinking my symptoms.  I knew something was really wrong, though.  I knew my body.  I knew that it wasn’t normal to writhe on the floor with a pain that felt like you’re simultaneously being stabbed and having boiling liquid thrown on you.  I knew it wasn’t normal to have that pain accompanied by days of extreme exhaustion and an intense bodily ache that hurt all over.  I also knew that it wasn’t normal to go through countless tests to find out why I wasn’t able to get pregnant, just to be told, it was “unexplained infertility”.  I knew, but I couldn’t get a doctor to listen to me.

Did you know that it can take an average of 10 years for a woman to be diagnosed with Endometriosis, all due to a lack of knowledge?  I’m so glad that I refused to listen to those doctors.  Instead, I kept switching doctors until I found one that would listen to me.  I will forever be grateful to the doctor who finally stopped and really listened to me.  She had the bedside manner of a porcupine and was a little too blunt for my taste but I can forgive her for that because she listened and she gave me a real answer.

Endometriosis cannot be diagnosed with a CT, MRI or an ultrasound and there is no test to diagnose it.  The only way to diagnose Endometriosis is through a diagnostic laparoscopy.  So when my doctor offered me this potential diagnosis and mentioned the surgery I went for it.  It seemed simple enough, a small incision in my belly button and a scope to find out what was going on in there, out the same day.  Easy peasy, I’d be back to work the next day.

The Diagnosis

1 in 10 women is affected by Endometriosis. In this post I'm sharing my journey to diagnosis as one of those 1 in 10.

I did have the surgery, and it was as described above but when I woke from the anesthesia and was listening to the doctor confirm her suspicions I realized that that little incision had knocked me on my ass.  Mine was just an exploratory surgery to diagnose the Endometriosis but man did it do a number on me.   I couldn’t even put my own pants on it hurt so much!  Then there was the reaction to the morphine they gave me.  I had never had any pain killer above extra strength Tylenol so when they pumped my 12 hours fasted body full of morphine my empty stomach said, “F This!” and I couldn’t stop throwing up!  This was just one more way this disease was negatively affecting my life.

At the same time that I was trying to get an answer to what was physically wrong with my body, Matt and I were also desperately trying to have a baby.  As a result, Matt and I were under the care of a fertility doctor, another wonderful symptom of the Endometriosis.  After I recovered from my surgery I went back to my fertility doctor in the hopes of beginning an IUI treatment.  I waited until my next cycle began and went in for my initial ultrasound before beginning.  The news I got was devastating, I had developed a large cyst on my ovary that threatened to burst if not taken care of.  The solution, you guessed it, another laparoscopy.

Back to my gynecologist, and in for another surgery.  This time, they were going to remove the endometrial tissue and drain the cyst.  I went in expecting the same as last time but at least I was prepared.  I knew to tell them not to give me morphine and I knew that I was going to have a few days of being pretty uncomfortable.  No big deal, “I got this”.  Wrong again!  This time, because they actually removed the tissue and the cyst they had to make two incisions and they scraped around inside.  I thought I was in pain before!  Basically, I was beaten to a pulp and then was beat again.  Fun times, let me tell ya.  In the end, though, that pain was worth it because we ended up with our beautiful angel, Addison.  For too many women, though, these surgeries and invasions of their bodies are the only brief relief they receive from their symptoms.

Where I Am Now

Too many women suffer in silence.  This is my Endometriosis story.

There is a light at the end of my Endometriosis struggle, though.  Amazingly and thankfully, my pain from my Endometriosis has not returned since the birth of our daughter.  It has been almost 5 years now and I no longer fear the pain each month.  My other symptoms have begun to return slightly though. Fatigue the first couple of days of my cycle, mood swings, and infertility; still infertility.  I have learned to manage my physical symptoms with lifestyle changes and a mostly all natural diet.  I have cut out, almost completely, gluten, dairy, and processed foods.  I gave up coffee for a few months but went back.  I didn’t need the caffeine once I stopped drinking it, but I missed the “moment” it gave me.  So I’m back to small amounts of coffee each day.

There is no cure for Endometriosis but through God’s Grace, I have found a way to manage and live with it, mostly symptom-free.  Many women are not that lucky though and suffer continuously, with only surgery or treatments that would otherwise prevent a woman from getting pregnant.  If you are one of the 1 in 10 women suffering from Endometriosis, I’m with you.  If you are a teen or adult woman who has been struggling with some of the symptoms I mentioned above with no answers please educate yourself on this disease and don’t give up until you find a doctor who listens.

If you would like more information or would like to know ways you can get involved please visit the Endometriosis Foundation of America.  I would love to hear your stories of your own struggle with Endometriosis.  Please leave your comments below or feel free to contact me personally.

 

 

 

 

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My name is Tasha and I am a 30-something Wife, Full-Time Working Mom, Midwest Girl, Blogger and lover of coffee, fashion, books, chocolate & yoga. My family and I live in Small Town, Iowa, where I was born and raised. Cookie Crumbs was launched as a way to express my creative needs and to share my journey as we navigate our new life in Iowa as a little family of three.

7 thoughts on “Endometriosis. Diagnosis And An Answer To The Pain.

  1. Beautiful article. I suffered with pelvic pain from 12-35 years old. Never heard about endometriosis until I was 33, and got a laparoscopy surgery at 35 which removed lesions on the uterus, ovaries and bladder; allowing me to get pregnant two months later! For many times I heard that my pain was “psychological” or that “it was normal for some woman to have pain”. Long story but with a happy ending: 2 children later, almost pain free. Let me know how I can help! I plan to write my story, I’m putting my thoughts together so should be able to do it soon.

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    1. Thank you for your kind words! It’s so sad that so many women go through the pain and suffering simply because a doctor doesn’t want to listen or doesn’t understand the condition. Congratulations on your happy ending! My husband and I have been blessed with one daughter after my second laparoscopy. I can’t wait to read your story.

      Like

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