Biopsy

I’m not sure why I was extra nervous to have the uterine biopsy done. I’ve been through worse procedures than this through the years of RPL, but for some reason I was REALLY nervous about this one. It just sounded like it was going to hurt. Kevin and I showed up to the clinic and I went to the back to sign the paperwork before I was allowed to take the Valium for the procedure. We at least had a laugh at the consent form. Medical consent forms always sound horrifying, so they don’t really scare me (especially with working in a hospital) but still. I did not want to be awake for this. I signed, took the Valium, and they wanted to start right away. Yikes! They agreed to give me some time for the medicine to kick in, but much to my dismay (but not surprise) it was basically a sugar pill and didn’t do anything for my nerves. Those drugs never work for me. After 30 minutes I told them I would just be brave and do my best to get through it.

The physical pain wasn’t as bad as I thought it was going to be, but I did feel a little violated afterwards as they pulled all the tools out of me. I was lying there with my feet in the stirrups thinking, “how many times am I going to endure these types of tests and not even know if the outcomes will lead to anything?” It’s all because I have so much love for a baby who doesn’t even exist yet. I cried a little after the doctor left the room. I’m so thankful for people who do these types of specialized tests. But it’s all hard to endure in the moment. I spent the rest of the day in bed until the bleeding stopped.

Then the real agony started. Waiting for results. It was a test that I mostly wanted to come back positive, because you want something to fix, something that IS fixable. I thought that's what I wanted all week, until they called me and told me my biopsy came back positive. Then it felt like a brick dropped into my stomach.

Why did I feel like this? This was a GOOD thing right? No cancer, no polyps, but those little plasma cells were all stained purple, and so, I have chronic endometritis. I guess it never feels good to hear that you’ve been diagnosed with yet another condition that causes you to lose babies. I already felt like I knew I had it- deep down. But HOW is it possible that we have SO MANY different and yet CRITICALLY important issues that cause us to lose pregnancies? What kind of a sick jackpot did we win?  (example pix below, not my own pix)

They told me I could either do a combo of two meds for two weeks and do a repeat biopsy to see if it worked, or a stronger med twice a day for a month with no repeat biopsy if I was struggling to afford another biopsy. Well first of all, I’m going to go with the stronger med at this point no matter what. Because good hell. And I can’t afford another biopsy (and I’m going to be anxious about that) but I’m trying to keep in mind that this treatment has a fantastic success rate.

I started reading some more about endometritis. I learned that you are most at risk to get it after childbirth, miscarriage, getting an IUD, or any other kind of pelvic procedure. The website instructed if you were having certain kinds of pain after childbirth, you may have endometritis and may need antibiotics, etc. My RE recently told me to think of it more as inflammation than an infection, even though it’s treated with antibiotics. 

All at once my mind flashed back to my postpartum recovery with Jack. Jack was born at 9 pounds and 4 oz to a (back then) skinny little me who didn't have hips yet. I was only a Junior in College and basically still had my teenage body. I tore and suffered a great deal in the recovery of birthing that baby who was way too big for me. I narrowly escaped a c-section with him. I remember trying anything over the counter I could to numb the pain, inside or out, taking that stuff that turns your pee orange to try and make it sting less. I used to just try and squat and pee standing up because the pain was so intense. I’m not exaggerating, I did not pee sitting down for 4 months. I went to the OB so many times, crying that I could not walk well, I could not climb into bed. They treated me for yeast infections (which we never really found evidence of) maybe 10-12 times. I remember it, picking up so many rounds of vaginal Flagyl. Over and over and over. They said we had to beat what must be a yeast infection. I was 21 years old, what did I know? After so many times, they eventually started giving me injections of numbing medications mixed with steroids straight into and around the vagina to try and "help the pain." All it did was make it worse. It bruised me. It was hell. They offered doing exploratory surgery where they would “cut everything back open” and try to let it reheal, suggesting maybe I had a trapped nerve. But everything was already stinging so bad, I couldn’t fathom it. I had an infant to take care of. I was in full time school. I stopped trying to treat it. I did more baths, walked slower. Eventually, by the time Jack was around a year old I was mostly ok again.

Last night, I sat on the bathroom floor, letting everything sink in, and with tears in my eyes, I looked at Kevin and said, “I bet that is when it started. I had it after Jack. That’s what all the pain was from. And we created some kind of superbug doing so many rounds of Flagyl. And I have probably had this for almost 8 years.”


I feel bitter, and sorrowful, and somewhat angry. But also understanding. I don’t even think this was a “thing” in 2011. I’m glad we know now. I’m glad that we still have some hope for treating it, even though there’s risk for some scarring after having it chronically (from what I’ve read.) I also feel extra thankful for Aidia. I can't imagine not having my sweet daughter. Had we lost her, maybe we would have given up. I still feel Kevin’s surgery was a major contributor to her survival. I’m trying to think back- did I maybe take antibiotics for a sinus infection or something just before she was conceived? Did that just tip the scales enough? I almost never take antibiotics.

I think of how I ended up in the ER just 4 months ago with intense pain that I thought was another burst cyst (an ovarian cyst had just burst two weeks prior, confirmed with ultrasound.) But despite a CT, they couldn't find any other cyst or any other reason, "must have been residual pain," and sent me home. So expensive, and no explanation. Is this related somehow?

I read about some of the symptoms of endometritis. Some of which include chronic fatigue, feeling sick, etc. Lots of the same symptoms as autoimmune thyroid disease. How much of my fatigue have I been accurately associating with my thyroid, and how much could have been contributed from have a low grade infection/inflammation for like, possibly 8 years? It’s a tricky thing. It was never enough to raise my white count in my blood work. I don’t fault anyone for never finding it.

The hardest part for me right now is wrapping my head around everything. I always thought for the most part, that our babies likely had something wrong with them at the very start. Something that was incompatible with life. And maybe many of them did. Especially before Kevin's surgery. Or if it was something wrong with my blood, that's something I was born with. But to think that it's possible that the babies were healthy, with strong DNA (as karyotyping suggests), and died due to an unhealthy environment in the womb... Especially one that may have been preventable had different decisions been made after Jack's birth, is just so painful. I don't feel like it's my fault necessarily, but it's so much more heart wrenching to think that Vincent was likely a healthy baby with no problems (since he was post surgery) and couldn't thrive in my womb due to a chronic issue that despite all the years of tests, we knew nothing about. So painful. So unfair. I wish I could get him back with what we know now.

I started the antibiotics last night. I’ll be doing probiotics in the middle of the day in between my two doses so I don’t die by the end of the month. It’s been a little rough in the first 24 hours. I’m not supposed to have dairy around the time I take them, so I just popped a few apple slices in my mouth when I took them this morning, before making the hour long round trip to take Jack to summer science camp. Big mistake. Not enough food. I spent the whole drive trying desperately not to vomit all over the car. Lesson learned and moving forward I will do anything to keep my tummy happy.

It’s so much guys. Emotionally and physically. Still grieving. Still hoping. Still wanting all this work to have a glorious payoff in the days to come. <3