In the last few days, Our Journey With an Incurable Disease has been blessed with new members. I recently asked if anyone wanted to share their endometriosis story in our blog. Amber was quick to respond and send me an email of her life with #endometriosis. Amber is a strong woman to allow us into her private world and feel her pain. I appreciate you being an advocate for all of us, Amber.
#knowledgeispower
Thank you for sharing your story. – Amy
So my story starts when I was 9 years old, I know I know that’s early and I had no idea what was going on. It was a Saturday and my mom was at work, of course that leaves me at home with……. Dad, yep I woke up that morning feeling under the weather and sick to my stomach, I had diarrhea (sorry it happens) and my dad was sure I had the flu. I told him how bad my stomach hurt so he called my mom at work. She also thinks I must have the flu. So the afternoon rolls around and at this point I’m sure it was my 19th excursion to the bathroom but this time it was different and so wrong, I started crying and yelling for my dad (poor dad) he came to the door and I told him I was bleeding I thought maybe my guts had exploded (remember I was 9). So after a quick questionnaire through the bathroom door he figures out what’s going on. He told me to stay put and called my mom. Yes I sat on the toilet for the next 20 minutes crying and waiting for my mom.
Fast forward a year to the next time I was about to have my period, after that I was like clockwork every 28 days I would cry with these horrible cramps and back pain and diarrhea. Unbearable pain a 10 year should not have to go through.
As the years past I would try things to help me through the pain, I actually missed so much school my 7th grade year I had to repeat the year……. All because of my period. Of course more time passed and as I was reaching my senior year of high school I noticed a change in my cycles, not a good change , I had my boyfriend now for about a year (who’s now my husband) I had to break the news to him, yep I thought I might be pregnant!!!!! I missed my period for two months I was young and scared and wasn’t about to fess up to my mom and dad that I had been having sex. So he and I went and bought a test……………. Negative (whew!!) ok now what??? Oh no worries I’m young and have no clue that something’s wrong with me, I start missing my periods regularly. I just go about my daily business as if nothing’s wrong.
A year passes and I’m out of high school I’ve matured some and realize that something is wrong, I shouldn’t be missing my periods like this. I schedule an appointment to go see my OBGYN. I tell her all my problems and explain that I’ve been missing my cycle, so being the wonderful doctor she is, she sets me up to have a Transvaginal Ultrasound (internal sonogram). At this point we find out I have several very large cysts that need to be removed, we schedule surgery to remove the cysts. A few weeks later here we are having surgery. Little did I know my world was about turn upside-down! I came to in the recovery room and I felt like my inside were on fire. So my doctor breaks it to me once I’m fully awake and delivers the outcome and heartbreaking news to me. She tells me of this horrible disease that I have and tells me I may never have children. Yes I’m only 19 and the news was devastating. But I already had a child in my life that I loved as much as life itself, since my husband already had a daughter when we met she was only 6 months old. I was depressed a little about the great possibility of not being able to have any of my own children but as you know time dragged on for me.
I moved on with life as much as I could always thinking of the infertility as just a part of my life. I started my Lupron Depot injections about 3 months after my surgery. I had one injection every month for the entire year, let me tell you the possible side effects were all there…. Ask my mom she says I was the biggest $&/@? that year. You name it as a side effects and I had it. I literally went through menopause and I wouldn’t wish it on my worst enemy. So finally about 4 months after my last injection I had started my cycle and it was weird??!!???!!! It lasted 3 days and it was pretty mild. I was happy with the results, and again life seemed to move along.
A few more years pass and I’m still having 3 day cycles. What’s this I hear??? Wedding bells? Yep I start planning a wedding and my world is all right. So my wedding is set for August 31st, so my mind is totally fixed on wedding so the end of July rolls around and my husband (boyfriend at the time) says to me ” um you never started your period” I’m thinking hmm must be my nerves from all this wedding chaos. A few weeks later he makes me take a test…. Bam! Positive!!!??? Wait what? So yeah my world just pretty much stopped spinning, I felt sick instantly I felt tired and weak I fell asleep standing up at work leaning against a wall. I just didn’t feel right. I went to see my OBGYN as soon as she could get me in…. Yep still positive….they do some blood work and everything is confirmed. So like I said I just didn’t feel good. A few more weeks go by and wedding is nearing, I call my Dr and complain about how bad I feel, mind you all I’ve been through and I really don’t complain much. So she has me get some more blood work done. At this time it’s now the point of no return, the week of the wedding is hear and she calls me with my blood work results and says I need to come in for a sonogram. She schedules us to come see her Friday and I try to reschedule seeing as I’m getting married the day after that, no she won’t have that, and tells us to come in and tells me how urgent the issue is. So we go get the sonogram done on Friday and have the results handed to us then, she says we’re fine, she just wanted to check me for an ectopic pregnancy. So she sends us on our way. We get married the next day and my new life begins.
A month passes and I still don’t feel well. I feel like I’m in a hazed over dream. I wake up one morning and my little world flips again. I felt it the moment I opened my eyes. I felt blank and empty my heart pounded it pounded so hard I could feel it breaking. I started bleeding that morning and I just wanted to die. Of course I didn’t I just picked up the pieces and moved along. I was ok though because something took place with my body that I feared would never happen, I got pregnant and it was just the beginning.
So a year later I missed again after being on a normal cycle. I went to the dr and it was like I was a lab rat, my OBGYN watched me like a hawk she poked and prodded me. She made me take progesterone suppositories she poked me more gave me a strict diet. She was amazing and I felt amazing. I knew this was it, I knew this would work the way I wanted it to, and it did. 9 months later January 13, 2004 my life paused for a moment and I met Bean (Jillian). I fell in love and it was a familiar love it was a love I already knew, it was a mother’s love that I knew from Sara my step daughter.
Life was on track and so was my cycle for a while anyways, and then it wasn’t… My cycle got off and my body started changing, my periods became physically debilitating my ovaries felt as though they would rupture each month when I cycled. My back ached like never before. My legs cramped like they would fall off. So one more time I missed a cycle and again I couldn’t believe it. Never trying never ever having protected sex of all the years I’ve been with my husband Brent and here I am again with this gift that would change my life once again.
Yep this was it June 13, 2006 I brought a new man into my life. Kenny came along and since we knew this was going to be a C-section we had also consented to have my tubal ligation.
(Side step from my story but still part of my story, I highly recommend Do not have your tubes tide, it has been almost 10 years since I had this done. At the time I weighed all the options and just knew this was right for me I signed papers I came to an agreement and understanding with my husband and we knew this was the choice we wanted…. To this day I struggle with the choice I made. I am human and made a mistake, your body is made to reproduce and I took that away from myself. I wish every day I hadn’t, I continually dream that I’m pregnant and wake up crying when I realize it just a dream, I wonder all the time if I hadn’t had the tubal if I would have been given any more precious gifts of life.)
So we can fast forward to present day and after a long stretch of steady cycles my body has turned against me. Each month my cycle is worse than the previous, I cry and moan from the pain, my cramps are horrendous I can hardly remember being pain free. I’m just here, sometimes I feel fine and don’t think about any of it, and sometimes it’s the only thing I think about. I’ve known about my disease 18 years and I have never met anyone else who has it. I didn’t even know there was any kind up support groups or awareness groups until recently when I started following Lena Dunham on Facebook, and that is how I found this group (OUR Journey with an incurable disease). That’s my story. This is my life.
~ Amber Light
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