BMW has asked that I share her Endometriosis journey with you today. She was diagnosed when she was 13 years old and is now 32. We live in the same area, so I look forward to getting to know her better!
Where to begin… As I lay curled up in the fetal position holding my stomach with one hand typing with the other. I find myself just wanting to talk to someone anyone… Wait no not anyone someone who understands. I’m in pain.
And not take a ibuprofen and lay down pain. But mental and physical anguish.
I deserve an Oscar, an Emmy, shoot I’ll take a Tony. Every last one of us who fake it. No not sex but like we deserve a kindness award for not breaking balls when it comes to that. But fake being fine. Fake that smile of “I’m fine” when in reality we are not. Hollywood has nothing on us!!
I was diagnosed with this unwanted guest at 13. My father died a year before from cancer. Before I was diagnosed I was in and out of the hospital. My mother was told numerous times that my pain was in my head. I was lucky though my mother had suffered the same pain prior to having me. She fought for me! She didn’t care how many doctors said it was nothing she knew it was real. I on the other hand began to think I was crazy. I mean they are doctors they know stuff. I was 13 what else was I suppose to think. My first surgery was at 14. I was on my period and in pain but they did the procedure. They found the pot of gold or pot of never ending poop, depends on who you ask.
Even after being diagnosed I was informed that I didn’t look or act sick. When I heard this I always wondered what does Endo sick look like? My Dad worked with last stage cancer. We didn’t find out until it had spread everywhere almost. He didn’t “act” sick. But I was told if I wanted doctors to believe me I had to look the part.
I had one issue: how do you look like you want to rip your own insides out. I did end up acting though I began to act “fine” I thought if I could pretend hard enough the pain would stop. Or at least everyone but my mother would stop looking at me like I was a drama queen when I said I hurt. I was put on birth control at 14. It gave me menopause symptoms. Night sweats, heat flashes, you name it I had it. So they changed my meds to the birth control shot. And boom no more periods. But now I was depressed and scared because I was still in pain. So they gave me two types of antidepressants. Which gave me suicidal thoughts and ended up with me being locked up for about two weeks in a mental ward. So in roughly two years I lost my dad, I lost my mind, and I lost myself. I began letting Endo control me.
At 15 I had my second surgery because I was still having pain. The doctor informed me and my mother that the Endo had spread “everywhere”?!? I was not sure what that meant. He showed us photos pointing out red dots and saying that it was endometriosis. My pain was cause by a dot was all I could think. He informed us that there was nothing he could do. He put me back on the shot. He did mention the pregnancy might help with the pain. Yep he told a 15 year old girl that having a baby might help. Needless to say my mom was quite pissed. He smoothed it over by informing her that I most likely would never be able to have kids.
I was sitting right there.
He said it so casual, I cried when I got home my mom reassured me that 1.That the doctor was an ass. 2. Nothing is written in stone. I, in return, pretended to be fine.
Endometriosis had just shoved me in the locker and dared me to tell someone. By sixteen I was mentally drained I had two laps, many different meds I put on antidepressants and topamax. And I started dating. I wanted to be normal and I was for the most part. At 16 I honed faking it. I became a flake because I didn’t want to tell anyone I was in to much pain to go out. I sucked it up and pretended if my boyfriend so me in pain I played it off. Because “No guy wants a sick girl” yep someone told teen me that. I felt so small I didn’t want to be sick. I wanted to be okay, I wanted to do what my friends did and not pop ibuprofen like candy to attempt to get through a day.
But I wasn’t okay but again I pretended. Endo was pushing me around and I was letting it. I stayed on the shot for seven years. After getting off I didn’t have my a period til two years after I stopped the shot. Then bang the pain increased. So they gave me the ring. I was 23 Great I thought I just have to keep one up there at all times.
I got married at 23 and moved cross country my husband is in the military. Still pretending I was fine. I stopped telling doctors I was in pain. One told me I had to have a period to clean myself out. (Yea, sounds real stupid right?) So I believed him I did it and by the third month I couldn’t get out of bed. I was alone in Washington State I knew nobody. My husband was on deployment. I was in so much pain I had to crawl to the bathroom I couldn’t make it to the kitchen at all .I was pretty sure I was dying or an alien was gonna jump from my stomach. By day four of only eating crackers that I had in my room and drinking water from the faucet in the tub because I couldn’t stand at the bathroom sink. The alien jumping out of my stomach started to sound good. I was terrified but I never said a word not to my husband in emails. Not to my mom in phone calls not even to my friends in phone calls. I would tell them I didn’t feel “well”. I acted as if the pain hadn’t changed.
When I did inform a female doctor of the horror I had gone through, she assured me it was normal sometimes females have”bad” periods. I tried to explain but swallowed my voice maybe I was overreacting. Endo had taken my voice again. Maybe it wasn’t “that bad”.
Looking back I could slap me! It was bad; it hurt inside and out. But I remained silent.
I got a new doctor who told after I explained to him my pain that I only needed to have a period to have a kid. And since I wasn’t trying to at 24. I could keep the ring in. So I did and life went on and so did I. I worked and cried in the bathroom when the pain got bad. I pushed through I had to I wasn’t gonna be weak.
Who wants a sick wife, friend, co-worker, employee. Nobody.
So I still let the pain bully me into silence. At 30 me and my husband decided to try for a baby. I removed my ring. And all hell broke loose! From period anxiety to bleeding bellybuttons. My symptoms are worse. And it’s scary doctors still don’t listen.
But I’m not going to be quiet anymore.
I lapse into faking it from time to time. But in all honesty I’m tired of being in pain. I’m tired of remaining silent because people might look at me strange. The hell with them!
I spent the majority of this illness blaming me. Hiding scared and alone. Not because I was actually alone but because I was ashamed of being in pain. Ashamed of being scared and looked at as weak or not good enough. Or seen as over dramatic. I will be damned if my nieces or God willing my daughter goes through what I went through. Nope!!!
Somebody is going to listen to me.
Words of Advice:
Don’t remain silent! Don’t let anyone make you feel crazy or less than because your in pain. You are more than your pain if you wanna cry. Then cry, scream , yell. Just don’t let the bully win.
If you would like to reach out to BMW, you can email her directly.
I want to send a special Thank You out to BMW for being brave enough to share her personal story, struggle, and strength with us today. We are so glad you will no longer remain silent!!!
And if YOU would like to share your story, please submit it to me. The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.