In my last entry, I mentioned at the end that endometriosis wasn’t done with me yet. Well, it might be, but not the lasting effects that endometriosis can have on the body.
It is not 100% certain that a patient will be completely pain-free following excision surgery for endometriosis, even in the absence of disease. (Keep in mind that even the best excisionists have recurrence rates ranging from, let’s say 7-15% depending on where you look.) There are multiple factors that can contribute to continued pain after surgery, including other pelvic pathologies such as uterine fibroids and adenomyosis (the latter of which only a suspected diagnosis can be made unless the uterus can be examined upon hysterectomy). However, one of the most common causes of continued pain following excision surgery is the formation of adhesions, or scar tissue.
In February 2015, not long after I finished healing from my excision surgery, I noticed a familiar sensation creeping back into the area where my right ovary was located. This was a feeling I had noticed prior to both of my endo surgeries. It was a tugging, pressure-like sensation. It felt like my ovary was a lump of hot coal, burning through my abdomen (or was that my heating pad trying to squash the pain?) I had a feeling I knew what was: adhesions.
I knew adhesion formation was a risk, even though it’s overall less common in lower stages of endo (I’m stage II out of IV, although the staging system is outdated and doesn’t adequately correlate operative findings with the effect the disease may have on a woman’s life). In addition, surgeons nowadays use barriers in various forms to keep adhesions from forming as best they can. But no method is perfect and it’s bound to happen sometime. Adhesion formation cannot be 100% prevented, no matter the barrier method used or how skilled the surgeon is (although there is no substitute for excellent surgical technique). You can’t blame the body for trying to heal itself as quickly as it can!
I was able to ignore the pain for a long time. It was more of a background nuisance than anything, with a constant 3/10 pain. (Believe me, when you’ve dealt with endo at its worst, 3/10 pain is nothing). However, in August 2015, I started to have spikes of pain up to 6-7/10. That was definitely a noticeable change. I asked my primary care physician to order an ultrasound in case I had a rogue cyst on my ovary, but the scan was completely normal. That led me to believe it must definitely be scar tissue. The problem with that is the only way to remove scar tissue is to have another laparoscopy to cut the scar tissue. But damaging tissue with more surgery can cause…you got it, more scar tissue. That wasn’t a vicious cycle I was willing to enter just yet, so I decided to just tough it out. I had leftover pain medication from my surgery to use if the pain got really bad. Still, being in constant pain, even at a low level, was indeed challenging and at times draining and there were some days I just wanted to scream. But I didn’t know what else to do at that point.
I’m going to briefly touch on another, more emotionally painful, aspect of my life for the sake of continuity. Around this same time, late summer/early fall 2015, my husband and I were trying to conceive a baby now that the endo was behind us (and would you believe sex was no longer painful for the first time in my life? Boy, was that a relief!) To make the longer story (which will be told in a later blog post) much shorter, we were unsuccessful after over a year of trying on our own, so I started taking Clomid to tell my brain to stimulate my ovaries to let go of some eggs. Three cycles of the medication did nothing but make me a depressed, psychological mess and grant me 4 ovarian cysts, who I named Eenie, Meenie, Mynie, and Moe. (Rather fitting, wouldn’t you say?) The cysts were found on an ultrasound in December 2015. When I finally had a follow-up ultrasound in March 2016, only one cyst (Meenie) remained, and it was much smaller than before.
At this point, I had numerous other medical issues that had arisen since the start of 2016. I will talk more about these in other posts, since they are all complex enough to deserve their own posts (and there’s more awareness to raise, yay!) Ever since the cysts happened, my pelvic pain had gotten out of control, mainly on the right side, but sometimes the left side joined in too, not to be left out of the party. I was now taking a lot of pain medications to control the multiple pain-causing problems I had. I was becoming tethered to my heating pad again. I was reaching a breaking point, physically, mentally, emotionally, and psychologically. Nothing was controlling my pain anymore and the medications I had to use to get any measure of relief made me feel ashamed and stigmatized.
It was at the end of April 2016 that it finally hit me that I had to do something. I had so many issues that needed to be dealt with and I had to start somewhere. So I decided to start with the problem that had been going on the longest: my chronic pelvic pain, which was only continuing to worsen. After my husband David and I had extensive discussions and prayers about what it would mean for us financially, I called up the CEC and asked about a surgery to perform adhesiolysis. They said my local OB/GYN could do it if he was certain he could attain complete hemostasis (cessation of bleeding). That made the decision for me at that moment. While I trust my OB/GYN with a pregnancy, I didn’t trust him to do this surgery properly. So we decided we’d be returning to Atlanta for another surgery.
So how did it turn out? Well friends, you’re in luck because it hasn’t happened yet! The big day is July 13, 2016, which, big yikes, is next week! You will all get to follow along this journey with me as I go through a second surgery that will hopefully take care of any adhesions as well as anything else Dr. Sinervo might find.
How do I feel about this surgery? I’m terrified, to be honest. Why? Because I don’t even know for sure that I really do have adhesions. What if this is all in my head somehow? What if he opens me up and finds everything just as it should be? That will be a very expensive waste of time for everyone, especially us. And then I really might need to have my head examined.
Stay tuned for our return to Atlanta!
Update: check out my post about my surgery in Atlanta, Always a Zebra!