Around 176 million women worldwide suffer from Endometriosis, 85 million in North America alone….. yet when I was diagnosed in 2009 at only 20 years old I had no clue what it was or what I would be battling for the rest of my life.
My name is Roxanne and my story starts in 2008.
My husband Eric and I had just welcomed our first child Kaleb into the world December 2 .In early 2009 I started having pain during intercourse. I pushed it off calling the doctor thinking with being a new mother it was just my body changing. It finally got so bad that I could hardly get out of bed or be intimate with Eric.
I finally put my fear and embarrassment behind me and called. Even now 5 years later I can remember the pain and crying so hard during the exam. He couldn’t tell anything so we scheduled the exploratory surgery.
On the Hunt for Answers
In late 2009 I went in to try to get some answers. I remember reading one of the handouts they gave me about endometriosis and praying to God that’s not what it was. I kept seeing the word infertile and it was terrifying. We only had one child and wanted more. The surgery only lasted about 15-20 min. When I came out to the room where Eric and my mother were waiting I knew just from looking in their eyes what was wrong with me. I broke down …thinking to myself “I’m only 20!!! Why me!? I want more babies!”
Come to find out I wasn’t infertile but I had so many lesions the doctor wouldn’t touch them.
We set up my follow up appointment and home we went. When we went in to discuss our options and the doctor wanted me to start the Lupron shots…now those scared me to death.
I didn’t want to risk our chances of having more children so Eric and I decided to wait on any treatment and start trying for another baby. We figured with how bad the Endometriosis was it might take a while to get pregnant , but in December 2010 we announced that we were expecting. August 2011 we had our daughter Kaylen.
Soon after that horrible “invisible monster” returned in full force and we started those dreaded Lupron shots.
I made it through one shot and told the doctor is wasn’t for me. I tried talking to him about a hysterectomy but he wouldn’t even consider it because I was so young so we decided to try the IUD Mirana instead.
I had it for about 2 years and was silently battling the pain day in and day out. After about a week of the worst pain I had ever had I went back into the doctor. At this point the pain was so bad I could hardly walk and I couldn’t even wear jeans.
After he examined me he said “Well… I don’t want to blame every pain that you have on the endo..and there’s nothing wrong I can tell from the exam ..So let’s just hope it goes away over the weekend”
My jaw dropped…REALLY?!?! Hope it goes away!?!?!
I hobbled out of his office with my mind made up I needed a new doctor but had no idea where to start.
God Works In Mysterious Ways Though
God works in mysterious ways is all I have to say!! Not even a week after all this I was listening to Hot96 on the radio when something messed up and Shawnda thought she was off air and wasn’t.
She was talking to someone about her battle with Endometriosis and I thought Holy cow!!! I’m not alone someone else has this!!
So, I took a shot in the dark and sent her a message on Facebook, thinking I probably wouldn’t hear anything back. I think it was the next day I checked my phone and there it was – the start to our endo-friendship.
I told her what all was going on with me and my doctor and she gave me the info to her doctor.
Now don’t get me wrong I loved my doctor, couldn’t have chosen a better one to deliver my babies…but when it came to treating me as a endo patient instead of a mother to be I felt like I wasn’t getting the treatment I needed. So I called and made an appointment with the new doctor Shawnda had recommended.
In early 2013 I went into that office with high hopes I would finally get some relief. Went through the exam and he wondered if it could have been my Mirana causing the pain so we started antibiotics. Long story short they didn’t help so we took it out.
Our only options then were him going in and remove any lesions he found or a hysterectomy if we were done having kids. The doctor was concerned that only removing the lesions would be a very short term fix, considering how much pain I was in.
After some long talks and lots of tears we decided on the hysterectomy.
We had previously decided that we were done after two kids, but to actually speak those words out loud was one of toughest things we ever had to do. We had talked about adopting a child early in our relationship so we at least had that to give us a little peace with our decision. It was just hard for me, as a woman..its our purpose..our meaning we were put on this earth to have children. Our bodies are amazing things..we can create and carry life. But all this is being taken from me.
Here I am 24yrs old having to make this life changing decision when all my friends are either getting married or just starting their families. But there’s only so much pain you can take. The pain had turned me into someone I wasn’t. I couldn’t enjoy life anymore. I was ready to be the mother and wife I knew I was meant to.
At this point, Shawnda and I hadn’t talked in a while so I texted her to tell her our plans and to thank her for everything. I told her the date of surgery and come to find out her and Dave had made the same decision and we would be having our hysterectomies back to back on the same day! I’m so sorry for everything that she has gone through but am also so thankful to have someone there with me that doesn’t tell me there’s nothing wrong or to just suck it up.
She understood, listened, and gave advice when I needed it.
August 23, 2013 was the day I went in to start taking my life back from Endometriosis. We drove an hour to the hospital with sweaty palms and a pounding heart. I kissed Eric and headed back. The surgery didn’t last too long and everything went just as it should have. I left that hospital thinking I was done with Endometriosis. But here I am not even a year later and the pain has returned.
We made the decision for the hysterectomy being told that after this everything would be fine. I wouldn’t have to worry about it anymore… little did I know I would. I went into it blind and looking back now I should have done some research and not just trusted the doctor.
Do I regret my hysterectomy?
No…not at all, BUT I still worry that I might not have made the same decision had I known I would have still been battling it. That’s why I think that this organization is amazing!! Women need to know they are not alone.
Women battling endometriosis need to know that they can reach out and get advice from women that have been there…through the countless doctor appointments…the late nights sitting up from pain.
We are here for each other…and we WILL survive.
We are Braave!!
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