My endo story
All of it started with me thinking I am dramatic. With me essentially gaslighting myself (oo and by others too, but I like to just ignore those) that my pain is normal, and that it is something I have to tough out because I am a woman. When really, what I was "toughing out" was bed-sentencing pain and near blackouts. Poor digestion, which led me to even skip eating for a while. I toughed out hair loss, and unnatural bloating, and crying silently at my desk at work. I toughed out ruining countless pairs of pants because I was bleeding too much to manage...
It is so true that we know ourselves best. And no matter how many times I tried to convince myself I was just weak, and I was a baby, I knew deep down that there was something far worse going on than just a pain tolerance issue. I started going to doctors after two hard years of living life like this. I did blood work, breath tests, urine tests, POOP TESTS EVEN (do you know how gross that is???). Nothing. No answers. I tried countless diets because maybe I was just lactose intolerant, or maybe even I had celiacs. Nothing helped! I had visited the urgent care countless times when the pain was all consuming, all sent me right back home. I finally got into a gastroentologists office. And got prescribed anxiety medication (???). Obviously, that didn't help either. And mind you, I didn't get a break from life while searching for answers. I had to cancel plans on days that were too painful for me to slap a smile on top. I had to medicate and push through on the days that were bearable. Attending school, dating, working- all of this was still going on. And after trial and error, trial and error, trial and error, I finally went into an obgyn. I thought they would understand and work real hard with me to figure this out. Once I got there, they were very quick to prescribe me oral birth control and get me out of that room. A year or so after all that, I was visiting with a new doctor who was asking about my stomach problems and about my painful periods, and he was the very first one to say- hey, maybe these are connected.
I ran with that. Researched so much and realized, wait, I think I might have endometriosis. (World Health Organization defines it as "Endometriosis is a disease characterized by the presence of tissue resembling endometrium (the lining of the uterus) outside the uterus. It causes a chronic inflammatory reaction that may result in the formation of scar tissue (adhesions, fibrosis) within the pelvis and other parts of the body. Several lesion types have been described.") I looked into the symptoms. Everything lined up. Looking through different social media communities, I felt so seen. I was excited! Not excited to think I may have a chronic illness, but excited because I felt I had finally gotten some true answers.
Before deeply diving into the possibility of getting a larascopy (the surgery performed to diagnosis/treat endo), I got an IUD. And WOOF, if anyone of you have gotten one, you know just how painful it is. Lowkey inhumane if you ask me. And while doing that procedure awake (yes boys, awake!), the doctor repeatedly checked in with me verbally. I just kept responding "yes I'm fine!", and yeah it hurt like HELL, but in reality, it didn't compare to my monthly periods. And when I told my doctor that very thing, her jaw dropped... and continued on explaining that that is indeed not normal. Driving back to work, because yes, I did this on my lunch break, I felt validated at last! A doctor! Telling me my pain is not normal! When I have been saying that for years! I felt a weight off my shoulders, and I decided to get my surgery done that very same year.
Since there is no other way to verify endo, you only can be medically diagnosed once the surgery is complete. It is honestly kind of a gamble! And the surgeon I was meeting with really made that clear. But at that point, I was certain but also desperate. So, I went in for surgery. And came out with answers.
They found growth on the outside of my uterus, covering my intestines, and actually coating my ovaries so badly, they had adhered themselves to my pelvic wall. They were able to remove all growth, and kinda put all my organs back into place. And hearing that, seeing the procedure report, the feeling was indescribable. I had been experiencing this pain for years. And it finally was summed up and confirmed in a paragraph right before me. I could finally explain it to people in a way that they may be able to understand better. Validation. I was overwhelmed with the feeling of it. And it was great.
That surgery was just over three months ago. Since then, I have also been on hormone treatments and still been in and out of doctors' offices for ultrasounds and checkups. I am still in pain. And I am coming to terms with the fact that I probably always will be. There are a lot of burdens that come with having endo. But I have good, strong days and I also have bad, weak days. And that is okay. I get the endo belly worst of all, but I just ended up buying jeans two sizes too big to make room for that every day. Life with a diagnosis is all about learning and compromise. Not just for me, but my loved ones too. My husband has done great at supporting me and doing what he can to learn more about the disease in general. Education is the most important thing to those close in my life. I'm lucky to have such resources and such a loving family. But I am even luckier I had such strong gut instincts guiding me to do the right thing so I can be properly taken care of.
