If you follow me on Instagram, you may know that recently I had to visit the hospital due to some new kinds of endo pain.
Here are some updates and a few prayer requests...
During our first night in Portland a few weeks ago, I started experiencing some abnormal stabbing pains. In the past, all my experiences with endometriosis had consisted of general pelvic pain that is hard to narrow down to a more specific spot, but these pains were so sharp and direct that I could literally point on my abdomen to where it hurt. Although these spasms came and went over the next few weeks, I never worried too much about them and I was able to handle the discomfort.
Two weeks ago, I was lying on the couch, watching a movie when all of a sudden the pain was unbearably sharp. I sat up, clutching my stomach, shouted an expletive (sorry mom) and my eyes began watering. It was a really uncharacteristic type of pain for me and the part that concerned me was how it was concentrated in that same location that had been bothering me for weeks.
After a day of playing Should-We-Go-To-The-ER-Or-Not, I decided that it would be a good idea - just to make sure nothing too seriously wrong was happening inside my body.
After chatting with a really idiotic nurse who criticized my use of Percocet for my endometriosis ("That's a really strong medication you know…" "Yeah… It's incredibly bad pain…") and then felt qualified to make comments about my possible infertility ("Endo and PCOS? Wow, good luck having kids." - apparently I need to send him this article haha) I finally saw a doctor who ordered a variety of tests. And hours later, a while after midnight, all the results came back normal.
That was obviously great news, but for the first time since my diagnosis, I felt that same let down of every test coming back normal, but being stuck without definite answers. The doctor chalked the pain up to most likely being new endometriosis growth on the ovaries and recommended I schedule my second surgery. Which I agree with, but it really frustrates me for a variety of reasons.
After my last surgery I completely changed my lifestyle. I heard the statistics that most women with endo had these laparoscopies every 2 years and I swore that I was not going to be one of them. I did the diet, regularly practiced yoga, started cycling, saw a naturopath, took the hormones, ingested a boatload of vitamins twice a day, my mom gave me shots on my hips, I put drops under my tongue, consulted with an acupuncturist, slept on an earthing sheet, switched over to entirely natural beauty products… and still, a year and a half later, (even sooner than average!) they want to cut me open again.
That's what drains me of my hope. Why did I do all of those things just to find out I was not going to beat the statistic? It wasn't an easy year and a half. It was really, really hard. We spent tons of money and time and effort on all these treatments just to find out the endo is still growing. And it almost seems like it's growing faster than it used to.
I don't really know what I'm going to do now. I feel like I'm driving a car, blindfolded, trying to get to a destination where I can finally relax. I'm being bombarded by other people's opinions and suggestions but what I really need is their support.
My parents are really passionate about me finally seeing an endometriosis specialist. I've seen fertility specialists and I've seen good gynecologists, but my parents are suggesting that I fly up to Stanford to see one of the highly regarded endo doctors up there, since we don't really have any local ones. Seeing a surgeon who really knows what they're doing is obviously ideal but I hate the idea of having to recover from surgery in a hotel room, in an unfamiliar town, away from Weston, my family and friends. It would be so much more expensive too, with all the travel costs - and we don't even know for sure that it would work better than just having the surgery down here, which makes it even harder to make that decision.
One thing I'm sure of, is after this surgery, I don't want to take the hormones anymore. I want to see if that is what caused the endo to grow back so rapidly. They were my surgeons recommendation and I started taking them a week after my post-op appointment but my naturopath has always been against it and the acupuncturist said it contradicts what she knows about treating endometriosis successfully. Stopping them is a really hard thing to do though, because it was the one thing that kept my pain at a minimum this past year. I had a few bad flare ups and lots of random painful days but it was nothing compared to what I went through in the year before my surgery. I'm really afraid of going through that again. In the short run it's going to suck, but I truly believe it will be best in the long run.
I'm also trying to figure out the best timing for surgery. The new school year is almost here and I don't want to miss any of the first couple months with my new students. I also don't want to have the surgery right before the holidays because I haven't had a pain-free Christmas in 3 years. There is a better chance for me to feel well before the surgery than after - especially when I won't be taking the hormones. So I'm praying for a wonderful holiday season and then a successful surgery. There's no real "good time" but for right now, that would be the most ideal for me, if I can make it until then.
Anyway, lots of updates. If you are the praying kind, please ask God to give me peace as I'm making these big decisions : timing, doctor, location, new treatments, etc. If you aren't the praying type, I also believe in the power of positive thoughts, so a few of those wouldn't hurt either. ;)
Thank you, as always!
Love you all.