Tuesday, September 23, 2014

The Monster Inside Me

Ovaries. The subject of many-a-blogs on here. The subject of many frustrations for me.

I had been feeling this ominous "something is really wrong with me" for several months. A couple weeks ago I began feeling some aching ovarian pain that increased when getting up from a sitting position or using the muscles needed to pee or do a bm.  I knew it was my ovary/ies. I also knew it would cost thousands and thousands to fix whatever was wrong. About 3 weeks ago I scheduled an appt with my husband's physician, a lady, and she said she'd allow my new patient exam to be my lady annual exam also. Which meant it would fall under my 1 allowed preventative visit per year and insurance would pay for all of it. It was scheduled for Sep 26. I told myself, just power through and make it to the 26th.

Sunday morning, the 21st, I felt even more "off". I hoped a quiet minute alone in the bathroom would help me. I asked Craig to keep an eye on the kids and I locked myself in the bathroom. Within minutes the pain grew exponentially. And then kept growing. Uninvited tears sprang from my eyes. I left the bathroom and told Craig I needed to go to the ER; this was serious. I could hardly walk. Sharp knives were doing a cruel dance in my right ovary and the pain rendered me paralyzed. It was beyond explanation.  In my heart I feared cancer and that this was the end. After losing my mother in law and then 10 months later, my dad, to cancer, I know I have a deep fear of that being my fate.

Craig called my mom for her to take me to the ER while he stayed home with the kids. I hobbled into the shower to rinse off and put on fresh clothes. I sobbed the whole time, both cussing and ask God to help me. The knives in my ovary got bigger and more mean. I toweled off, whimpering and moaning, and got dressed. I walked out to the living room, hoping my mom would be waiting, ready to take me. She didn't arrive for another 35 min. I feared I would die before she appeared. Around 10:15am, 45 minutes from the onset of the knives, something went terribly wrong. The pain was so agonizing I wished someone could kill me. My tongue, arms, hands, and feet started tingling and wouldn't move. It was scary and something I'd never experienced. I was dripping sweat, yet chilled, and my body began dry heaving. The 800mg of ibuprofen I'd taken at 9:30 didn't make a dent in the sharp stabbing pains racking my body.

I was ready to call 911 when suddenly the pain level of 15 stopped and gave way to a 7...still awful but I no longer hoped someone would murder me. The tingling stopped, my tongue started working, I could walk again. Then my mom arrived. I debated what to do. The grey cloud lingering over my tsunami was the insurance dilemma. I knew the ER would cost thousands. The pain continued and after double checking that no Urgent Care facilities had an ultrasound machine, my mom drove me to the Harrison Emergency Department.

At arrival I was in tears. It was hard to stand at the counter and tell them my name.  My blood pressure was 175/101 and my hands were shaking. The nurse explained that extreme pain can make blood pressure react that way.

They got me a bed in about 10 minutes. A couple nurses rotated asking me my history and about the day's events. The pain would go away nearly completely and then rear it's head and leave me in tears again. It made me feel weak and I hated having to ask over and over and over for pain meds. It took quite a while, maybe 45min to an hour but they finally got me Zofran for nausea and Dilauded for pain. It made my head feel spacey immediately but the knives continued to dance in my ovary. An ultrasound was ordered and we waited. About 40 minutes later the tech arrived, another dose of Dilauded was given, and we looked at my ovaries. The tech said she was not able to tell me anything as she worked. So I watched, in horror, confusion, and amazement, as my right ovary measured over 12cm. It should be the size of a walnut! I felt the same way I did 2 years ago when we discovered a Dermoid Tumor and 9cm of cysts- WTF.

 Why does my body torture me?

The ultrasound tech made a comment about me handling this monster quite amazingly...that women with 1-3cm cysts are often seen freaking out, asking for pain meds. I told the tech, "I wish I had a penis"!

Then we waited another hour for radiology to review my ultrasound and the ED Physician to come talk to me. She told me she'd consulted with the on-call surgeon and because this was not life or death, they would not do surgery on me that day. I felt panicked, wondering how I was supposed to survive the pain and take care of my kids while waiting for surgery. 2 calls in and an hour wait later my mom spoke directly to the on call surgeon and was again told no, as the cost of bringing in the whole surgical team was not warranted in a non-emergent scenario. Everyone said they empathized, but no one would help. After 5 hours in the ED, I was discharged. I limped to the car in the parking lot, holding back sobs. Totally confused how they could send a woman home in such incredible pain and with such a huge growth. We picked up narcotics from the pharmacy on the way home.

I got home, put on jammies, nursed my baby, hugged my girls, and waited the 1 1/2 hours it took for the meds to bring any relief. I felt better for a while, then woke around midnight with excruciating pain, then took another pill and went back to sleep. 

When morning came I felt nearly fine. Only a dull ache and soreness remained. I waited til 8:30 for the surgeon's office to open and was told they had to order my report from the ED, wait til 9:30 for the surgeon to come in, and then call me back to schedule. They called at 10:20 and scheduled me for a consult at 1:15.

This is what I learned at my appointment:
The waxing and waning of pain is consistent with torsion, which is the twisting of the cyst with ovarian tissue. It can cut off blood supply to the ovary and kill the organ.

The cyst was easily palpable to the surgeon and extends all the way to my belly button. It is as if I am 18 weeks pregnant. 

The cells of an ovarian cyst release their own hormones and this being a 12 1/2cm cyst it is releasing A LOT. These hormones mess greatly with my mental health and my ability to function normally, lose weight or maintain a good weight. 

Antidepressants (like Zoloft) butt heads with the cyst's hormones (I quit Zoloft over a month ago after feeling crappy on it, now I know why)

My body doesn't want this cyst, so it spends all the energy it has trying to fight it. There is nothing left for my other needs- emotional or physical. 

The bulk of my PolyCysticOvarianSyndrome issues may be blamed on my right ovary. Removing the ovary might make me feel better than I have in years. It may not. 

The remaining ovary might ovulate and function semi normally. It may not. 

There may be a tumor or cancer or any number of things going on, we won't know until the surgeon is in and poking around. Removing the sickest ovary, which appears to be the right, looks like our best option with the knowledge we currently have. 

I asked if removing both ovaries would be better for me. The surgeon said doing so would put me into menopause and she would not do that to someone so young. 

Surgery is scheduled for the 26th. I am anxious to have it done and to begin recovery. I want to feel like myself again. It's been a very long time since I have. 

I am nervous to start receiving medical bills, estimated to be about $12k. We are a single income family with three kids 5 and under. That's a TON of money to us and we certainly don't have it laying it around. I will fill out all paperwork I can to have costs reduced. We do not qualify for much so far. Not broke enough for Medicaid, ya know?

At this moment my baby is asleep on me. His chubby body melted into the body that grew and sustained him for 9 1/2 months and has now fed him for 13 1/2 months. This moment is precious and I will smell his milky breath and savor this, knowing the God of Angel Armies goes before me into each day. He knew about all of this before I did. It's not fair, I didn't cause this pain, but I have it and I'll survive it. The knives can find someplace else to dance.

~Diana



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