From day one, I had the worst periods.
Then, I think I was 18 years old when I experienced my first real tragic symptom. A miscarriage. Of course, I didn’t know it at the time because I was so young and had never heard of endometriosis, yet alone that endometriosis could be a cause of failed pregnancy.
It haunted me. Even though it was with my high school/college boyfriend and we were broken up at the time, I wanted to be a mother. I’ve always said I was put on this earth to do two things: Talk on the radio and be a momma.
But, I dealt with it. Moved on, sort of. However, I didn’t realize there was an underlying cause and that the underlying cause would come back to haunt me years later.
Officially Trying to Get Pregnant
Fast forward a year or so and I met my husband Dave. We dated for a couple of years and got married in 2004. We started trying for baby a couple of years in to the marriage.
No luck. Feeling discouraged, we gave up. Then, the following year, we tried again. Still no luck.
Finally, after 3 1/2 years, we got pregnant. Howie Wayne was born a healthy 9 lbs.
That underlying cause though, like a ghost in the dark, she was lurking waiting to come back and get me.
And get me she did. After giving birth to Howie – that’s when I really started to go downhill.
What is Happening to Me?
Like I said, I always struggled with very painful periods.
But, now I was extremely tired, dizzy and some days it was even difficult to do very small tasks. Then, it all came to a head one day while getting out of the shower. I became so dizzy I completely passed out. When I finally came to, I started crying. I felt so bad and I was terrified, I had no clue what was happening to me.
After many tests and doctors’ visits, I found out I was half a point from a blood transfusion because my iron was so low. They claimed it was “anemia” and from that point forward, for the next 3 months, I spent every Friday hooked up to an IV for 6 hours at a time.
This began the chase for a diagnosis.
Following the transfusions, I felt a little better but still not quite myself. Eventually, I started to fall again and when I hit rock bottom and couldn’t function any longer I went back to the doctor.
Again, the doctor ran some blood work and it came back abnormal. My ferritin levels were off the charts. Just so happens, off-the-chart ferritin levels are one of the markers of Lymphoma.
So, that’s what I was told. It was potentially Lymphoma.
I was terrified. My family was terrified.
The Cycle of Misdiagnoses
Turns out though, it wasn’t lymphoma. And since it wasn’t lymphoma, it was back to the doctor for more tests and the start of a vicious cycle of misdiagnoses that would last me almost 4 years and thousands of dollars.
Next in the misdiagnosis cycle was breast cancer.
Mammogram came back normal though. Turns out, it could possibly be multiple sclerosis.
Ok, it wasn’t multiple sclerosis.
The doc really thinks it’s cancer, so back to another cancer specialist.
Welp, the cancer specialist says it isn’t cancer. He says that it’s anxiety and that I need to “see a Psychiatrist…”
For the record, I still want to punch that guy.
Little did I know I had a savior waiting in the wings…my hero…Dr. Sandefur. He told me on my first visit, without hesitation, that he could almost guarantee I had endometriosis.
But, the only way to positively diagnose it is to do exploration surgery.
Two weeks later I was getting prepped for surgery, went under the knife, AND what do you know…he removed 40+ endometriosis tumors.
After the surgery, I felt a little better BUT eventually I started to go downhill again. My husband and I made the decision to move forward with the hysterectomy.
Although there is no cure for endometriosis, for some, a hysterectomy can help with the pain and make life a little easier.
Getting a Hysterectomy
I remember sitting in Dr. Sandefur’s office talking to him about my decision. I wasn’t even out of his office before the tears just started running down my face. I had to accept the fact that I could not have any more children. I would never be able to see my son, who has the biggest heart, be a big brother.
It was and IS still truly heartbreaking.
That very moment though, I stopped being afraid to speak out about my health. It’s like I could finally see light at the end of the tunnel. There was hope.
Up until this point, I had got up at 3 AM to trudge into the station and do a radio show every day. Every day it was my job, while enduring extreme physical pain and mental anguish, to entertain others.
Behind closed doors though? My life was in shambles.
A Weight Lifted
The day I decided to share my health issues, I got hundreds of emails…thousands of facebook messages from women who were dealing with similar problems. Some of them already diagnosed with endometriosis.
I was overwhelmed. Part of me felt a weight had been lifted, that I wasn’t alone in this. At the same time, with the radio platform I have, I also felt a sense of duty to help.
It was during that time that I made the decision to be a voice and help others that were either undiagnosed or currently battling endometriosis. I had to wait years to get diagnosis. Maybe I could help someone shave time off and get them a diagnosis in week instead of 10 years?
That’s what Braave is aimed to do. To help women get the help they need while encouraging them to keep fighting and to be their own health advocate.
I had a complete hysterectomy August 2013. Although the physical pain is gone…I live with endometriosis every single day. I struggle every single day BUT with the support of my family, friends and co-workers…I know I’ll power through because they have my back.
Do you or someone you know have endometriosis?
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