More Endometriosis Fun

Post-Surgery Update

My doc said it went really well, and there was "lots of endometriosis" on the ovary that they removed as well as some other sites that were lasered. She said she also took lots of pictures to document. I was awake enough when she came in to recovery to be relieved and validated when she told me that she found what I knew I felt. It's a miracle I remembered what she said because I was sooo tired when I woke up in recovery due to not sleeping much the night before (and having to leave the house at 5am). After my eyes fell back shut a few dozen times, it was music to my ears when the the nurse taking care of me said to another nurse, "how many kids does she have? Three? Let her sleep." Straight.up.saint, she was.

I was also more nauseous from the anesthesia than I expected to be, so the nurse gave me some Phenergan which knocked me out for another two hours. It was great. Then I was met by Peter and Ethan who was busy playing on his tablet (in order to ensure that the hospital stayed standing during the 3 hours they were waiting for me) before going home and sleeping for another 4 hours or so. I'm feeling surprisingly good physically, save for the usual soreness and some real nice side-stitches under my ribs from the CO2 they inflated me with.

Physical recovery should be about two weeks and 4-6 weeks total recovery with my body adjusting to its new normal. I'll be waiting (im)patiently to hear more details from my doc and ask more questions at my post-op, but for now I am feeling very hopeful that what she saw and removed might've taken care of some, or even a lot, of my overall pain. And now it is time for more sleep...any thanks again to all who helped with your love and prayers--I felt absolutely surrounded by your support!

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Original Post

I really haven't talked about my endometriosis here in awhile, mostly I guess because there's been nothing much to say except... it hurts. And I complain enough already about other stuff, so nobody needs more Debbie Downer.

But since my last surgery three years ago, which frustratingly didn't go the way I'd hoped, my body has unfortunately gone steadily downhill. Even though I'm trying to continue living my life at my normal pace, I've started having more bad days than good as my pain and digestive issues increase and my body quits on me more and more in the midst of the activities I love.

So, long story short, tomorrow I'm having another surgery--my third so far because of this little condition.

Shortly after the last surgery, I started seeing a different doctor at an amazing new center (if you're in the Denver area, I can't recommend Bella Natural Women's Care enough -- I have never in my life received such attentive and personalized medical care.) Ultimately, I discerned with the medical team that another surgery was the best route for me to go right now.

I know some of you are here as dear friends, some are womenfolk who are fellow women's health junkies, and others are here because you are also suffering from some mean endo or similar issues; if we're tight and you want the gritty details of the inner workings (and malfunctions) of my body and cycles, continue on. I share such personal details not because I relish airing them to the world, but in the event that they may help someone else the way other women who have shared in the past have helped me. I know how desperately I have scoured the internet for information at times. Otherwise, you may want to stop here to avoid the general awkwardness that accompanies said topics -- but I'd love your prayers as I offer my own that this will ultimately be my path that leads to healing!

Onto the details...

This surgery will be a chance to take another look, find and remove any more endometriosis sites that might be discovered, also a single oophorectomy, i.e. removal of my left ovary.  My doctor will also be taking tissue biopsies to look for microscopic endometriosis that may not be visible to the naked eye during the surgery (this was a big concern after the last surgery where everything "looked great" save a small endo site on and behind my ovary.

These are the main issues in the past three years that have led me here:

• Increase in ovulation pain, always on the left side (regardless of whether I have confirmed ovulation from the right side). It has become unbearable most cycles, and is a different, more acute type of pinching/cramping pain as compared to 'regular' period cramps.
• Severe cramping anywhere from 3 to 7 days before menses (and continuing until the last day of a 7- to 8-day period).
• Early ovulation on day 9 or 10 immediately following menses. 
• Progesterone supplementation for low progesterone that was causing a short luteal phase (this is the second "half" of the cycle between ovulation and the next period).
• Pain on contact. I cringe and want to jump out of my skin when anything puts pressure on my left side around my abdomen or legs.  This includes my kids sitting on my lap or laying their heads on me, anything nice my poor husband does like touching my leg or giving me an impromptu hug, any sort of waistband that isn't extra loose (I've been wearing more dresses and even sized up when I bought my last pair of jeans), and maddeningly my seat belt. Some days are less painful than others, but again, it never completely disappears and lately the bad days have been outweigh the good ones.
• Constant pain that accompanies and appears to contribute to digestive troubles. My GI issues are more controlled after having officially cut out all dairy, gluten, soy, garlic, and onion due to sensitivities, but cycle pain still seems to trigger lots of issues.
• Painful bloating. Some moments I look like my normal self, but only a few hours later I might legitimately look like I'm four months pregnant. Not that how I look matters that much, but it's so uncomfortable and sometimes alarmingly obvious. 
• Pain during and after running or virtually any form of exercise that involves leg/core movement.
• Fatigue. Lots of physical exhaustion and fatigue.
• Overall I've just become extremely weak and out of shape as a second-order effect because of limiting so much activity. My weight has continued to drop, my muscles have wasted away, and my joints are all out of whack--right now my neck and back, both shoulders, and one knee are pretty much shot. I jokingly blame it on getting "older" but I know I can't chalk it all up to my days in the Army or my body taking a beating as a gymnast/diver; the fact is that overall, I'm just in a very weak and unhealthy state, and I know that being stronger overall would prevent a lot of my issues. 

On the worst days, I manage the above pain with maximum doses of ibuprofen (which is the only thing over the years that has proven effective). But that's not exactly great for my system either, being that it's a blood thinner and hard on the stomach, so I try to take it only on days with the highest pain level.

When discerning the next step, my doctor and I discussed the fact that basically anything we do right now is will be process of elimination, and/or a multi-faceted approach. She talked to me about a few different options, including trying Lupron before surgery, which I'll talk about briefly because it is one of the most commonly recommended short-term treatments for pain that hasn't responded to other treatments. Lupron is a medication that essentially shuts down the reproductive system and triggers a medically-induced menopause for a time (but it can't be used long-term just for pain management because it is too hard on the body). The point in trying it prior to a surgery would be to see which symptoms resolve, if any, and then operate accordingly. For me, because insurance was actually covering my surgery though the end of the year, (unlike last time, eep $$$$) we decided going straight to the surgery and cutting out the middle of the hormonal roller coaster might be better.

My doctor ultimately recommended removal of my left ovary regardless of what it looks like on the surface, because in past surgeries, endometriosis sites have always been found on or around that ovary, and it's always been the uncontested site chronic pain, along with other problems like stiffness as well as being the side which resulted in my ectopic pregnancy. So, tomorrow I will bid farewell.

After this surgery, my doc also wants me to follow up with a colonoscopy (joy of joys) to rule out whether there's anything in addition to the endometriosis that's been contributing to my digestive issues.

Ultimately I feel peaceful about the decision, but I've still been having a few moments of freak out. I've spent so many days saying "if I had a scalpel, I'd cut out the dang thing right now" that part of me is relieved and ready to say good riddance. But as soon as it became a reality, I also got pretty darn nervous about certain things. I mean, I'm suddenly ditching a major hormone production factory. Supposedly my other ovary will pick up the slack and take over, but I admit I'm a bit nervous about how long that process will take for my brain to convince my body to flip the switch; I wonder if I'll be raging hormonal/emotional mess for a few months or more, if I'll have normal cycles, and most of all, if it will do anything to help the pain. I don't want to get my hopes up after the last ineffective surgery that left me so disappointed. But I also acknowledge the real possibility that this ovary could be the root of so many of my issues, that maybe it was going haywire already, and maybe I'll actually be infinitely more stable hormonally after it's gone. Maybe I'll finally have the freedom to be the more active, involved, attentive mom and wife I want to be.

There's only one way to find out, and I suppose I'm about to either way.

And lest this all seems completely woe-is-me, I will say that spiritually, I'm going into this in a very good place. I have spent the past week or so working with my whole heart and soul toward surrender to what is best (helped immensely by this novena) and God has given me some incredible confirmation that He sees, He knows, and He has a definite plan - even if I'm not privy to all the details.

Well, there you have it: the long-winded, crazy inner dialogue that is my reality. I will be offering for all of you who have shared prayer requests and all my friends and loved ones. I also covet your prayers - for a successful surgery, for my medical team, for my recovery, and for my overall healing if it is God's will!