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

It's Never Boring

Do you ever feel like you are spending most of your life just trying to figure your life out?  It's been like that lately.  Logistics.  Being a PRN at work I feel like most of my job is just trying to nail down my schedule and find hours I can actually work.  I'm a stay at home mom 50 hours a week, and I have to go to work outside of those hours, day or night.  In addition to that I've been trying to schedule the kid's summer activities, manage our finances, go to counseling, and solve all our medical mysteries.  Adulting, am I right?  On the medical mystery side of things, life has been quite interesting this past month.  Even more so than I expected.

I spent a lot of time as we waiting for our karyotype results preparing myself to accept what fate had handed to us.  If we had something frequently fatal written in our chromosomes, in our very DNA, it explained so much, and there's little we could do about it.  By the time our results finally came in, I fully anticipated seeing an abnormal marker, and was ready to embark on the journey to acceptance of what this might mean for our life.  Imagine my surprise and confusion when we learned that not one, but both of us had normal karyotypes. How?  How do we have normal chromosomes and yet, 7 losses?  That in combination with Kevin's DFI result really meant that genetically speaking, we should be able to have a viable baby.  It was shocking and thrilling, to feel that little spark of hope again, that just maybe, we could complete our family with one last rainbow baby.  Even with that hope, the medical side of my brain was spinning.  I could blame 6 losses on Kevin's DFI before surgery.  Was our loss of Vincent just a "chance loss"?  Did it have to do with my blood or MTHFR?  Somehow tie into autoimmune?  Was it something else entirely? 

After our results came in, we set up a consult with our fertility doctor.  We've been working with him since 2014, but we haven't sat down to talk with him and go over everything in years.  We wanted to make sure we weren't missing anything and everyone wanted to be on the same page.  For the appointment, I tried to summarize our history into one page.  Everything we knew was a problem and everything we had ruled out.  It kind of turned into a horrifying type of resume.  I wanted to lay everything out clearly and ask the doctor if there was anything I had missed or anything more I could do.  We waited about a month before he had an opening to see us.   

When we sat down with our doctor it was a comforting place to be.  It's probably not a good thing when the fertility clinic feels like home, but those people have been so good and kind to me for so long and I trust them.  The appointment was at least an hour of the three of us just talking in his office.  He told me on the one hand, I seemed more well read in this area than some of the physicians he knows, but on the other, he was sure I had gotten to that point out of necessity, and he was very sorry for that.  We discussed all the theories.  "The more we learn the less we understand about all of this" and that type of thing.  I expressed how unless there was something brand new I just didn't think there was anything left.  He looked up, like with a twinkle in his eye y'all, and said, "Actually there is."

I was just like...wait, what?  And he explained even since the time I had been in last this was new.  At a conference he was at he learned about this new study that suggested 25-30% of women with recurrent pregnancy loss were testing positive for endometritis.  Now don't confuse that with endometriosis, you've heard of that before, it comes with fibroids and bleeding and major symptoms.  That was ruled out for me ages ago.  Endometritis is more at the cellular level.  They test for it by doing a uterine biopsy and looking for CD138 cells (I believe they are plasma cells.)  I had so many questions.  Could I have had this my whole life or was this a flare up thing?  He really didn't have the answers, it's all SO NEW.  But one thing I do know is that inflammation is so highly correlated with autoimmune and that blew my mind.  He said that was a very good point.  When this was introduced to him he thought 25-30% of patients? Impossible.  Until he started testing his own patients with 2+ losses.  He told me about a fourth of them have come back positive.  And the treatment is simple, it's basically an antibiotic treatment.

SO.  My mind is blown.  Could I have possibly been on an antibiotic for something before we got pregnant with Aidia and forgotten?  I want to get this information out there.  I'm not excited about a uterine biopsy but I've done lots of painful procedures that I've had to be awake for, what else is new.  It has been such a headache to work this out.  Between the insurance and job schedules (and then there are only certain cycle days you can have the biopsy done.)  But my doctor is an angel and offered to do his portion of the biopsy for FREE so I could focus on paying for the pathology portion (it's a send out lab.)  He really wants to know if I have endometritis.  So my biopsy is in like, 4 days.   

Meanwhile, life has pressed on.  I think for many people, miscarriage may seem like a short term hardship that ends, but for many parents it doesn't feel like that.  We continue living it.  I go to work and stand outside the door of a newborn baby and its mother, and I have to take a little breath of courage to myself before going in to do my job.  My heart shatters just a bit every time, as I smile and congratulate them.  Not because I don't feel joy for them.  But because I feel so aware of how empty I am.  How I am not almost 5 months along as I should be.  The grief doesn't stop and the struggle to continue to look to the future with hope is just that, a struggle.  It's work.  It takes a lot of energy.  Sometimes you're hanging in there by a thread and it's just a normal Tuesday. 

Sometimes all Aidia wants to watch is the "Big Brother" episode of Daniel Tiger where they get everything ready and then his mom has a baby at the hospital.  She will cry until I change it to that episode because she's so fascinated and excited by it.  That part doesn't make me sad, I love her for it.  She adores babies and she's only 2.5 years old.  I hope someday I can give her that experience. 

Some nights I stay up and cry half the night.  Sometimes it feels like it just barely happened.  Like just today, I got a bill from an OB I saw during my pregnancy that wasn't processed correctly.  It doesn't just stop for me.  I've been asked if I'm "feeling better" as if having a miscarriage (or 7) was like having the flu or something.  No.  I'm not feeling better.  But I'm being as strong as I can be and having faith even on the days that I feel the most sorrowful.  It seems like having children is difficult and sacrifice enough, it shouldn't be this difficult to actually HAVE them.  It's a sentiment I've heard expressed often in the infertility community. 

For me, it's hard to be baby hungry and know I have the ability to get pregnant, but I'm so afraid to be pregnant and gamble if they would survive or not.  It's the worst kind of gamble.  It's your health, the baby's health, your sanity, your family's stability, your finances.  All of it. 

I lost a lot of ink when my tattoo healed because it had such fine lines, so I had it touched up/ redone a bit and that was healing for me a bit.  Sometimes when everything hurts a lot emotionally it helps to have something physical or tangible with me to represent all the memories, work, love, hurt, for all my babies.  It's been such a journey.

forget-me-nots

The longer I've been off any medication to manage anxiety and depression, the more difficult it is to run a normal life and keep a happy environment for my hubby and kids.  I can still manage it but it takes much more effort and comes with more breakdowns.  It's a sacrifice I'm willing to make when growing a healthy baby, but it's a harder sacrifice at the moment.  My meds can't be taken while pregnant so I can't restart them now (it takes a few months for them to work and it's very hard on the brain chemistry to start and stop them if we're going to try again.)  So it's actually easier to stay off for now since I'm already off. It's one of the reasons we don't want to put off trying if we're going to try again.  I'm already doing one of the hardest parts.  I've been working at counseling but it is hard to feel yourself slipping and gradually declining.  If the unthinkable happened and we had another loss, I would definitely take like a year off from all of this at least and go back on my meds.  But hopefully with everything we've learned, and however the biopsy turns out, we will have our last rainbow baby on the way later this year. <3