My Endo story began OFFICIALLY in August 2015 during a diagnostic laparoscopy after about a month of chronic pain in my back and pelvis. As I was going under - a blur of doctors and nurses above me, wires everywhere, non-stop beeping noises... I remember my fearful thought that followed me the whole time I was in pain - "What if they don't find anything? What if it's all in my head?".
Turns out not only was it NOT in my head... what they found was too complex for the surgeon and at that moment on the operating table... all I was going to get was a diagnosis and another surgery.
They found my pelvis frozen completely in place by adhesions caused by endometriosis. My ovaries were wrapped and stuck behind my uterus. Finally... and explanation for my pain. Followed by a whole host of questions as to why I didn't know about endometriosis sooner. But, that's a blog post for another day.
I had surgery again in November 2015. Four months later I was back in pain. Several ER visits, doctor appointments, and research later, we found another surgeon who was willing to take my case. This surgeon does the surgeries in two parts due to a protective coating she puts on organs to prevent scar tissue from forming. So in December 2017, I had two more surgeries - the first of which lasted 8.5 hours. My body told the same story as before - frozen pelvis, ovaries attached to the back of the uterus... but this time, the adhesions started pinching my bowels. I needed a bowel resection.
For 9 or so beautiful months... I lived in a normal world. I no longer felt like my body was attacking me constantly. I was able to make plans and keep them. I could travel without experiencing pain in my back and pelvis. I was no longer constantly aware of how my body felt. I thought I finally was as free from endometriosis as I could be thanks to an excision surgery (excision is the gold standard for treating endometriosis).
Unfortunately, this feeling didn't last forever. The return of the pain came on slowly for a couple of months. Just some random back or pelvic pain here or there. Some fatigue returning. Then, seemingly out of nowhere, the flare-ups returned.
What's a flare-up? It differs from patient to patient. For me, a flare-up feels like someone is squeezing my backbone and pelvic cavity to the point where I can barely move. When I do move, it feels like everything is being pulled - somehow, something in my pelvis feels like a tugging sensation any direction I move. This time around, I also have nausea. And lots of it. Zofran has become my best friend. I started taking B6 in the morning as a preventative measure. Doesn't matter, though. Because during a flare-up, chances are my already tired and sore body is hunched over the toilet, either full-out vomiting or dry heaving to the point my stomach muscles ache.
For a month and a half I was completely out of work because my flare-ups were lasting so long. My life felt like one, long, non-stop, stupid flare-up that wouldn't go away. I tried to push through the pain and tell myself that I'm going to have to learn to live with it. That only made things worse.
Things got so bad I seriously considered ending my life. By seriously I mean I ended up in the hospital and was admitted. The pain had gotten so bad, doctors were brushing me off, and it felt like there was absolutely no end in sight to my misery.
I was put on a nerve-blocker during my absolutely HORRENDOUS stay in the Psychiatric Unit. It seemed to help with my day-to-day pain. It didn't help at all with the flare-ups.
I pushed myself to go back to work. My doctor decided part-time was best to start. I wasn't really ready. I didn't feel like my pain was really under control enough to go back. But, I was tired of feeling like a burden to others, so I went back to work.
After a week of part-time, I pushed myself even harder and convinced myself and my doctor that I was ready to go back to full-time. I wasn't, but I didn't want my husband to worry about me losing my job, I didn't want to let down my team, and I didn't want keep inconveniencing my coworkers.
The week I went back full-time, I ended up in the ER with bad pelvic pain on my left-hand side and uncontrollable nausea. Zofran wasn't touching it. I had taken B6 that morning. I didn't think I could keep a pain pill down. Earlier in the week, I also had some pretty intense flare-ups. But, I did everything I could to power through them and fake it until I made it through the day, even though every part of my body - especially my back and pelvis - wanted to shrivel up and die.
As part of a recommendation from an excision specialist during a phone consult for a second opinion, my nerve-blocker (Lyrica) was doubled and I was put on a suppository that contains Valium and Baclofen. I had already started some physical therapy after a recommendation from one of the MANY doctors I have seen this time around.
During all of this, so far, nothing has changed except the "good" days where my baseline pain is now a 1-2 instead of a 3-4. Progress, I suppose.
Since I experienced increased flare-ups and I had yet another ER visit this go around, I was medically advised to go back to part-time at work. I know that's what my body needs. I've been told I need to take care of myself. But, when I feel like I'm letting other people down AND I'm causing extra work for others... it feels super crappy.
Not only that, I feel judgement. I feel judged. I feel like people look at me - a seemingly healthy individual - and wonder why I don't just suck it up and deal with it.
I hate that so much. If they only knew the level of pain I endure on a daily basis. If they only knew how often I've cried, how often I've missed family events, how often I have to spend my weekends doing ABSOLUTELY NOTHING in order to try to recharge for the next week AND try to avoid anything that would cause the flare-ups to happen or worsen, how I have had to choose to not go see my family that lives 3 hours away because the trip would put me into misery... maybe they wouldn't judge me so harshly. Or maybe they would.
I'm working on getting to the Mayo Clinic next. I'm so, so sick of dealing with being sick constantly. I'm tired of messing around, running in circles and getting nowhere.
Endometriosis sucks. That's all there is to it. It feels like this story truly began in Junior High/High School... when I would take 3 ibuprofen a day for days leading up to when my period started. Where I was taking 3-4 ibuprofen at a time and prayed for relief. A time when I thought my pain was "normal". In college, I had the option of not going to class on those days. And I chose that option and would sleep. Because sleep is when I wouldn't feel pain.
There is no cure for endometriosis. So for me - and women like me - this journey might never truly end. We may get some relief if we are treated properly, but sadly, many women don't get the proper care due to the lack of providers that TRULY understand the disease and how to treat it. (That is a whole different blog post for a different day - and frankly one I'd likely avoid in order to not offend any providers.).
I hope one day I won't have to live with it as much. But until then... this remains my seemingly ongoing battle for answers, relief, and treatment.
Kristy
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