Well, so far, this week’s score is 2:1 and Endometriosis is in the lead.
Yesterday I had the worst flare-up that I have had in years. I woke up in horrible pain, so I sent an e-mail to work letting them know that I would be a couple of hours late.
I took my meds, sat on the couch, drinking coffee and smoking cigarettes, waiting for the meds to kick in. As far as I could tell, they never did.
The pain continued to get worse, so I sent another e-mail telling my co-workers what was going on and that I would try to work the 2nd half of the day. This was very troubling to me, as my boss likes to take spur of the moment road trips and had hit the road the day before so I knew that he would not be in the office. For that reason, I had planned on going to work no matter what, but this situation was out of my control. I could hardly walk or even move without moaning in pain, let alone drive and function at my workplace.
Luckily I had my laptop with me and let everyone know that I could perform any essential functions from home, if anything urgent came up.
Within the hour things got even worse. By this time, I had waddled my way to the bathroom, doubled over in excruciating pain. The pain was so severe that I was suddenly drenched in sweat and started removing layers of clothing as they became completely soaked. At this point I was crying out for help. I could barely breathe and barely talk, but I still tried to utter the words “help me”, “please call my Mom”, “I need to go to the ER.”
My husband was sleeping and my muffled cries were not loud enough to wake him, so help never came. There wouldn’t have been much anyone could do anyway and for several reasons, I would have regretted going to the ER if I had ended up going so I guess how everything played out was for the best.
Within a few minutes, my vision started getting blurry and then I was seeing stars and starting to get tunnel vision. It felt like a serrated edge knife had been plunged into my abdomen and was been turned, plunging deeper and deeper every second. Seconds felt like minutes and minutes felt like hours, as my body was completely overcome by pain. I felt ripping and tearing, which was most likely related to pelvic adhesions from my previous Endometriosis surgeries, in addition to the Endo itself. I could no longer walk and could barely crawl. For the most part I just curled up in the floor and tried not to move.
This helpless feeling was not a new one. I had been here before. I knew the next step to avoid passing out was to run a warm bath and hope that the heat and water would calm my raging reproductive and gastrointestinal system.
Unfortunately, during my most severe Endo flare-ups, every part of my abdomen is affected so I have to stay near a toilet. The bathtub is usually close enough. Sorry for the TMI but that is the harsh reality of this disease.
I managed to drag my tortured body into the bathtub as it filled with water, that wouldn’t get nearly warm enough. I curled up as close to the fetal position as my small bathtub would allow, trying not to faint, fearing that if I did I might drown.
What scared me the most is that I was experiencing level 8+ pain while on my prescribed pain medication. The pain was just as severe as it used to get before I had meds to manage it with myself. My medications are meant to keep me out of the ER and are very strong but even with them, I could feel everything, including such horrific pain that I almost went to the hospital anyway.
Without meds, I am certain that my body would’ve gone into shock, like it did when I was hospitalized for the first time as a teenager with severe abdominal pain. Of course that was 15 years before I was diagnosed with this horrid disease and they did not know what was wrong with me but they did know that I was in shock from pain and internal bleeding, which they blamed on a ruptured cyst and Pelvic Inflammatory Disease (a common misdiagnosis for women with Endo).
During all of this, I kept my phone close-by, on the edge of the bathtub, in case I had to call my Mom or dial 911. Looking back, I am lucky that it didn’t fall into the water since I was frequently getting out, crawling back and forth from the toilet to the tub. While I was in the water, I saw an e-mail come through from one of my co-workers, letting me know that it was really slow at the office so if I could I should really just stay home. That was such a blessing because by that time, I knew I had no choice and could not go anywhere, unless it was to the hospital. I managed to hunt and peck a reply letting her know that I would go ahead and stay home, explaining the best I could how severe things were and letting her know that I would try to remain available to complete essential tasks or emergency items from home. I hope that my employer appreciates my willingness to do things from home when I am this sick because it is not easy but I think it’s the least I can do when my chronic illness makes it impossible for me to be present sometimes.
About 3 hours later, the worst pain started to ease up. It was in no way gone, but I no longer had my phone in my hand with my ride to the ER on speed-dial. After that, I slept off and on for most of the day, as is a common reaction for my body after it has experienced that level of trauma. I set my alarm to wake me up every hour and a half so I could approve purchase requests for my office and I also took care of a couple of emergency items that came up throughout the day.
I took it easy the rest of the day and night, trying to manage the remaining pain, which (while still severe) seemed a lot easier to handle after what I had been through that morning.
Endometriosis flare-ups like this are usually how I gauge that it’s time for my next surgery to clear out Endo and new pelvic adhesions. I have known that it’s time for quite a while now, but after yesterday, any remaining doubt is gone. IT IS TIME. Despite knowing this, I lack the financial resources to make it happen, especially now that we have discovered a vascular problem in my husband’s leg that will inevitably require some sort of treatment. My only hope is that the cost my hubby’s treatment will get us to our health insurance stop-loss, at which point I might be able to work in a surgery before the end of the year. That is probably little more than wishful thinking though, because it would mean we would have to come up with the money to cover the gap between where we are and the stop-loss and that is something that we just don’t have.
Well, yesterday’s events have left me utterly exhausted today so this concludes my Endo diary entry for now. I am going to try to get some R & R this afternoon, so hopefully I can try to go visit my parents tomorrow and work up the strength to work my full schedule next week. Wish me luck!
Wishing you all a low pain level day. ❤