Endometriosis tried to kill me. I’m not going to let it win. This isn’t a sympathy story. This is a story to bring awareness about a horrific, debilitating disease that’s affecting millions of women all over the world. About me. I’m the one that jumps in to help on silent auctions, to raise money, to volunteer on boards of any kind. I don’t ask for help. I can’t. I am now. Not in my community though. I’m going to put this out there, alone in the world, amongst strangers and leave it in God’s hands.
My journey with endometriosis started in 2010. I didn’t know it was endometriosis. Smack me in the head because I am a nurse. I didn’t have the normal symptoms of heavy periods, painful cramps, clots etc. I had severe groin pain inside my right hip and right flank pain. Sometimes it was in my left hip. Occasionally it wandered up to my right rib cage. Over the span of two years I was in and out of my ob/gyn’s office. I got the typical comment. You’re a women. You probably had a cyst that burst. You will be okay. We can’t find anything. In 2011 the pain started to get really severe, to the point that I was in fetal position on the floor in tears and then throwing up. I ended up in my local emergency room a few times (where I had previously worked as a medic before I was a nurse). I knew the protocol. Right sided pain always gets a CT scan because you for sure have appendicitis. Well I had appendicitis probably 8 times. I’m not shitting you. Sorry about my trucker mouth, as my dad would say. They always wanted to do the “down there” exam”. That was an instant- hell to the no. It’s all good down there. Can’t have sex cuz it feels like someone is shoving a knife up there so ya-you ain’t going there either. Well I hit my breaking point early 2012 when a ER doc that I didn’t know came back to my room as I’m writhing in pain, begging for a diagnosis...and proceeds to tell me I’m there for narcotics. Yup-know that protocol as well. I told him to pull my pharmacy records. I get all my scripts filled at one place. I go to one hospital. I didn’t even fill the RX they gave me from the week before because they don’t HELP AT ALL. It take me a lot to cry. Did I mention I’m a military wife and mom of 4. We cry ALOT during the first deployment. After that we are one tough mama. But I cried. Because he was telling me that I was something I wasn’t. I marched my fat ass. Yes it was fat because I had been sick (pre-eclampsia, I’ll get to that later) anyways I marched my fat ass across the street to my ob/gyn at 4:45. One doctor was left. I squatted. Not literally but you know what I mean. I refused to leave until he put me on the surgery schedule for Monday (it was a Friday and he refused to do it that night. No idea why?) I said I was done with two years of pain. I did not have any cysts, nor was I going to be tested for appendicitis ever again. I told him I knew something was wrong and I was not leaving until he scheduled an exploratory laparoscopy on Monday.
Well I got my lap on Monday. She told me she would probably find a cyst on my right ovary. I told her to give me the papers to sign for a hysterectomy and to take out whatever she needed because I was in pain and I wanted it all gone. My great surgeon that was going to only find a cyst ended up in over her head. I woke up from surgery and not only did she do NOTHING!!!! I found out that I had stage 4 endometriosis. My entire uterus was bleeding on the outside. She cauterized a few active spots. She found endometriosis in my pelvic cavity, hips, my ovaries were glued to my hips. It was everywhere. I ended up in the hospital for 7 days in excruciating pain just from her going in and causing more inflammation and not even taking my uterus out. That’s the short version.
7 surgeries later and I’ve had every organ removed due to endometriosis with the exception of my left ovary. About every 18 months my new surgeon that has attempted to save me from this debilitating disease, has to go in and pry my ovary from my hip. Since I don’t have anything else I hold it in place it’s suspended. I’m hoping to keep it as long as I can. I’ve been in acute liver failure and currently acute kidney failure all due to endometriosis. Just last October I had to have my left kidney and ureter rebuilt due to scar tissue and endometriosis. Just to add to our fun, my firefighter/military husband had an aortic aneurysm in 2012 as well and needed open heart surgery to replace his valve so he didn’t blow up. He’s not part cow. Which he thinks is cool. Unfortunately for him we had to go with the cow valve which is a temporary fix because of his jobs because the permanent fix requires patients to be on Coumadin, a blood thinner-which would put him out of work as well. He’s only lucky guy to be able to recover from that and still be able to back back to firefighting. That was a tough one.
So needless to say. I’ve been out of work a long time. My family is struggling. We are a hot, semi-functional mess with a crap ton of debt barely able to buy groceries and putting bills on credit cards. I don’t complain because things can be way worse. I don’t complain because I don’t teach my kids to live and be like that. My husband on the other hand is so stressed he’s aged 30 years. But for the love of my family. I need to do something. If this works it does. If it doesn’t, it wasn’t meant to be. I will continue to tell my story. Insomnia is another nice symptom! I have a test on my kidneys on Monday! Fingers crossed! Oh and we just found out my husband is deploying again this fall for a year. He’s been to Iraq twice, and Afghanistan once.
If you can’t donate please share so you and I can help create awareness about endometriosis! Its a life changing, debilitating disease that nobody can see. It’s exhausting. Some days you can’t get out of bed. Some days you’re in excruciating pain. And no, a hysterectomy does not always cure it. For me it was too late. It covered almost every organ in my body. I will live with chronic pain from adhesion and recurring endometriomias popping up for the rest of my life. I now I have to worry about bilateral hydroneprosis (enlarged kidneys) and both of my ureters being compromised from having endometriosis scraped off of them. One of which was rebuilt along with my lower kidney and bladder and hopefully will hold up. My creatinine and GFR may never go back to normal, which leaves my kidneys compromised and in failure. This disease is no joke. But I won’t ever let it win. I will create awareness and help other women.