One of the biggest fears Endo patients have is if there really is Endometriosis inside of them. You cannot see it on an ultrasound, truly you cannot be diagnosed officially until they cut into you. You read stories of some women with such severe pain but then the doctors find very little Endo and some patients with little pain that had a lot of Endo. Luckily for me, I have what was a confirmed Endometrioma before every surgery I have had, so I knew there was at least that going for me. But still, there is this nagging feeling of what if there is nothing? Is it all in my head? Is it worth the pain, the money, and the stress to have surgery? Maybe the doubts come from all of the years of invalidation from doctors: telling you that you just have bad periods, telling you to just take some Advil and use a heating pad, telling you to just get on birth control already.
I was especially nervous this time around since my last surgery was only a year and a half ago. The pain these past few months with my period has been insurmountable, the type of pain you feel in your teeth, the type of pain that makes you want to rip your hair out. This pain is a different pain than previous. Before my first surgery I had consistent pain all the time, an unrelenting wave that washed over me all day, knocking me back onto the sand so I had to keep standing up. This new pain is so debilitating during my period, and always at 2 or 3am when the Advil and Tylenol run out, that nothing abates it until the new dosage kicks in and my heating pad and my tens machine are on. It is so bad that I have to take the Advil a little bit earlier than I should during the day and wear my tens machine for 24 hours. So there has to be something inside of me doing this, right?
When I woke up from anesthesia, I was so nauseous, I knew I had been under for a long time, and I could not ask for Zofran fast enough. I felt woozy, a combination of drugs and the amount of questions swirling in my head since my surgery was the day after the election (more on that later!) I felt a huge brick on my belly and an ache I knew all too well. My doctor had done a lot of work in there, I could feel it even though the anesthesiologist did Lidocaine injections in my abdomen at the end of my surgery. Endosisters, I would highly recommend this for any of your future surgeries! It made a world of difference when I came home.
My doctor checked on me towards the end of my post-op stay, and at that point, I was on some serious pain meds and very out of it. But I remember every word, every feeling in my heart and brain as she validated all of my pain and suffering.
Endometriosis- everywhere in pelvic cavity. On my ovaries, on my uterus, on my colon, on my bladder, and that my endometriosis had nodules on them which implanted them a little deeper into their host. Multiple cysts, a decent size Endometrioma in my right ovary with a second cyst next to it. Cysts in my left ovary as well. All of this grew so quickly, in less than a year they had identified via ultra sound that my Endometrioma had grown back in my right ovary. I was on the tip of naming that girl, the unrelenting, stubborn cyst that just did not want to leave my body. But I am hoping she is gone forever now.
So what does this mean for me? Someone who severely struggles with any type of birth control or hormone therapy? Lifestyle changes. I have to see how much I can control my estrogen with lifestyle changes and supplements. Working on my stress (eek- that is so scary to me!) needs to also be a focal point as well as what food I am putting into my body, what products I am using to clean or put on my body, how much I am exercising and sleeping. My road to recovery and healing will also be a road to self discovery. I do not want to keep traumatizing my body with surgery or put the weight of recovery on my family, friends, and co-workers shoulders again or deal once more with the financial toll it takes on my family.
So on this road to self discovery came this idea for a blog… Maybe because I need a place to vent and express my feelings, but more importantly because I want others to know they are not alone. I feel you, Endosister. And I am here for you. We will get through this together, working on a plan to kick Endo’s ass before it kicks ours again.