Don’t you forget about me...

Did you read the title? Are you singing with me? Hi, you’re my people. Anyway, let’s get down to business. I know it’s been a while since my last post—it’s been a crazy whirlwind of recovering from the excision surgery and presacral neurectomy (or PSN, which is much easier), trying to finish this master’s degree (two months left!), working full-time and traveling for said job, running my side biz, AND judging... Whew. But since today begins Endometriosis Awareness Month, I thought it would be a good time to let you know what’s been going and also remind you that March is Endometriosis Awareness Month! 💛

So, my surgery went well. According to my doctor, there was a lot more damage than he expected. He went well over the time he had allotted for the surgery: He originally set aside two hours for it but told Dave he didn’t think it would take more than an hour, hour and a half, tops. It ended up taking three. But he did a really thorough job. He removed endo from under my ovaries, behind my ovaries, my bladder, my bowels, and my diaphragm (MY DIAPHRAGM, y’all) as well removed a fibroid from my uterus and a bunch of scar tissue from previous surgeries. After all was said and done, he classified my endo as stage 3. I didn’t even know that endo was classified in stages, because none of my other doctors in previous surgeries had bothered to do that. So, if you’re like me, now you’re asking, “What the heck is stage 3 endo?”

Basically, endo is classified in four stages, with stage 1 considered minimal, stage 2 mild, stage 3 moderate, and stage 4 severe, though I don’t think those descriptions accurately capture the extensiveness of the pain they can all cause. Stage 1 and 2 are the most common, in case you were curious. I won’t get into the details of how each one is classified, because honestly, I don’t think y’all want to know that. But if your morbid curiosity is killing you, check out this article from the Endometriosis Foundation of America (it does have pictures, consider yourself warned). Just knowing how painful my endo is (was? I don’t really know at this point) at stage 3, I need everyone to stop and give mad props to those living with stage 4—y’all are some real warriors. I can only imagine how painful and debilitating that stage of endo is. Anyway, hooray, you learned something today! But now, back to the story.

I stayed in the hospital overnight, which I was pretty nervous about, given that I had never stayed overnight in a hospital before, but it really wasn’t that bad! My doctor was amazing. I wish he could be my doctor permanently, but alas, that is not how it works. The hospital staff was great. They took excellent care of me, the facility was nicer than some hotels I’ve been in, and they went out of their way to make sure Dave was comfortable as well. Speaking of Dave, he was also amazing. He even went to the hotel while I was in recovery just to get my face wash and moisturizer, because, as he put it, “I thought you might want to feel like an actual human in the morning.” Plus, he knows what a soap snob I am, lol. I was discharged the next morning after breakfast (chocolate pudding because I couldn’t stomach anything else 😂🤷🏼‍♀️). We stayed in our hotel that night, because I wasn’t quite ready for a long car ride yet, then went home the next day.

Recovery was pretty easy, though it has been terribly boring and a bit frustrating for me—I’m used to being on the go all the time, running, going to the gym, traveling, etc., so being confined to the couch and needing help just to get up is a big blow. I guess I shouldn’t complain too much. It could have been worse, and I could have had complications or an infection or something like that, but aside from an awful rash caused by an allergic reaction to the glue over my incisions (leave it to me, right?), recovery has been pretty uneventful. It’s slower than I hoped, but that’s just because I have really high expectations for myself, and those expectations were not realistic considering the average recovery time for this surgery is three months. But me being me, I expected to be back to normal in like three weeks. Go ahead and laugh at my expense, it’s fine. I’m starting to get back to normal now, though. I’m back to judging, I’m currently headed back from my first work trip since surgery, I’ve been walking regularly (I’m up to three miles!), and I’ve recently started some personal training sessions so I can transition back into the gym. As it turns out, life will go on. More importantly, though, I ACTUALLY FEEL BETTER. This is probably the least amount of pain I’ve had since I was 16. To put that another way for you, this is the least amount of pain I’ve had in 20 years—TWENTY YEARS. I’ve actually been in pain for more years of my life than I haven’t. It’s bananas. I’m only two months out from surgery, so it may be too soon to really make a final judgement, but for the first time, I feel really, truly hopeful. Even more so than when I started the drug trial, which I am now so happy I failed. I have even more scars to feel self-conscious about now, but hey, they tell a story—my story. Slowly but surely, I’m getting my life back, and I really wish that this surgery were accessible for every single person struggling with endo. But it’s not. Which brings me to Endometriosis Awareness Month.

As you know, March is Endometriosis Awareness Month. Why do we need an awareness month? I’ll tell you.
💛 Because despite the fact that 176 million people worldwide are affected by endo, we still don’t know what causes it, how to cure it, how to prevent it, or even how to treat it.
💛 Because despite the fact that 176 million people worldwide are affected by endo, and despite the fact that excision surgery (what I just had), in which the surgeon removes the whole legion including the tissue beneath the surface, is the gold standard for treatment and greatly reduces the chance of the endo growing back, most doctors cannot and will not perform it nor is it a procedure covered by most insurance companies. Rather, most doctors perform and most insurance companies cover ablation, cauterization, or hysterectomy—none of which really address the problem at hand. Ablation and cauterization get rid of the surface lesion but not any that might be present in the underlying tissue, while hysterectomy does nothing at all for endo, as endo does not occur in the uterus (when the lesions occur in the uterus, that is adenomyosis, which is also incredibly painful and can be cured with a hysterectomy or treated with a PSN, which is the other procedure I had). We actually had to pay out of pocket for this life-changing surgery.
💛 Because someone you know is probably suffering silently, not knowing what to do.
💛 Because despite the fact that pregnancy does not cure endo, doctors still recommend it as a treatment.
💛 Because every patient is different in the treatments they respond to, yet it can be incredibly difficult to get your doctor to hear you out if birth control isn’t working to control your symptoms.
💛 Because research has shown that endo can be present during FETAL DEVELOPMENT and merely activated during puberty and that there is likely a genetic component to endo, but more research is needed to fully understand these findings.
💛 Because I could go on and on and on about this, but I know we all have a limited attention span, and if you've made it this far, you're probably reaching the end of it, ha!

If you want to read more, visit endofound.org. And if you're feeling called to support a cause this month, please donate to the Endometriosis Association.

March is Endometriosis Awareness Month. Don't you forget about me (or us).

Until next time.

Yours,
Robyn

P.S., and completely and utterly unrelated, but did you hear The Babysitters Club is coming to Netflix?!?! What a time to be alive!