My husband, Patrick, and I met in August 2014 and soon embarked on what can only be described as a whirlwind romance. On our first date, we ended up talking for hours - or more accurately, I talked for hours and he listened. We quickly became inseparable spending most of our free time together. It was at the start of our relationship that we both "knew" that we wanted to be together for the long haul. My ah-ha moment started when I told him I was hungry while he was at a military function. He asked what I would eat if I could pick anything and I told him pizza. After several follow up questions in which we negotiated what toppings were and were not OK on pizza, a delivery person showed up at my apartment with a paid for pizza. The ah-ha moment for me wasn't so much that he bought me pizza, but that he, without any prompting or expectations, took the time to make sure I had what I needed (in this case food) and felt cared about.
At this point in our relationship, I had admitted that we were, in fact, a couple, but maintained that he was not under any circumstances moving in. By October, his tooth brush, several items of clothing, and a large flat screen TV had made their way to my apartment (joke was on me, right?). We were engaged in February and by May moved from Georgia to Massachusetts. After three months, we picked up and moved again to Maine. This time, we had jobs lined up and after two weeks of house hunting had made an offer.
Our home, a large farmhouse in rural Maine, had everything we were looking for. It was big enough for us to start a family and have plenty of room to grow, had a decent piece of land, and was still in town / close enough to civilization. As of this summer, we will have lived here for five years and to say that things played out a little differently than we had planned would be an understatement. You see, we were married in September of 2016 and had decided we would wait a bit to start trying to conceive. Our journey to become parents lasted over 800 days and started back in November of 2017. After trying for a baby for about 5 months we didn’t think anything of not being pregnant - it happens, sometimes it takes a while we thought. The chaos started shortly after my husband found a lump in his testicle one night. I scheduled an appointment for him at our primary care providers office and we were seen almost immediately. An ultrasound and referral to a urologist came next. We knew something was wrong or at least not right when the urologist appointment also happened almost immediately. This appointment changed everything.
The appointment started off normal, as normal as any high stress doctors visit could. We were told that there was a 99% chance it was cancer. That surgery was going to happen to remove it as soon as possible and then a set of full body scans would be done. Somewhere in the sense of shock and awe we had the forethought to ask about what that meant for having kids. We were told that that ship had probably already sailed, that it would be highly unlikely his sperm was viable and we could bank some before the surgery if we wanted because chemo would make that probability less likely. I wish I could say that this information wasn’t presented so... harshly but the doctor seriously lacked bedside manner. At this point, we were terrified. We were scared for his health and scared for the future we thought were slipping through our fingers.We cried in silence and mourned the family we thought we’d never have fearful of the next steps on the drive home. We left the office with one week until surgery. I called my OBGYN and asked who to call about banking sperm. They referred me to Boston IVF and in the small span of time between appointment and surgery my husband made the first of many awkward trips to make a "donation" that we could freeze for future. The surgery results came back quickly and to the shock and awe of the doctor, it wasn't cancer but a non-specific granuloma (Think of it like an envelope of cells that your body has made because it thinks something is foreign or an invader. It's the bodies way of saying hey! this doesn't belong, from what I understand).
Next step in the journey was body scans. It was at this time that my husbands lower lymph nodes and spleen lit up like Christmas lights causing surgery number 2 to be scheduled.
Apparently, you’re wide awake for a spleen biopsy and it’s rather painful from what my husband told me. Again, these results came back as non-specific granulomas. Stumped, the urologist sent us off to a rheumatologist. The rheumatologist ran his own battery of tests and scans before telling us that my husband had sarcoidosis. Sarcoidosis is characterized by the body creating masses, the granulomas, as a response to inflammation or some other trigger. Typically, this is seen in the lungs and brain. Less than 1% of cases, we were told, originate in a man parts. The good news was that nothing had to be done. His lungs were fine and he was asymptomatic. We had to do follow up scans and appointments in about 6 months to keep an eye on things but otherwise this leg of the nightmare was over.
January of 2018 we met with Dr.Lannon from Boston IVF for the first time. He ordered a sperm analysis for February to see how my husbands body was responding. At our follow up, we were told that his results were normal and to try on our own for 3 months. In May, we had a follow up appointment and sperm analysis since we still weren’t pregnant. At this point, those seemingly normal numbers had fallen. Our fears from months earlier returned in full force whispering that we’d never have a family. Luckily, Dr. Lannon doesn’t sugar coat information. He told us that our issue was that sperm and egg just weren’t meeting and that he may never be able to pin point why this was happening or why my husbands numbers fell like they did, but he could fix the problem. We were filled to the brim with hope for the next four months as we tried IUI after IUI. Failure after failure the low numbers just kept looking worse as we saw negative pregnancy test after negative. For those of you who have been graced by not staring at sperm analyses anything until 20million is considered low. There isn’t a thought that 9mil is any different than like 7mil - they’re both just low. The data nerd in me would freak out every month as the numbers got worse to be consoled by Dr.Lannon that the numbers were essentially just looked at as low each month until we had our second straight month of 1mil.
We were cautioned at this point that IUIs were a waste of our money. At the same time, we were referred to a new urologist to just to make sure we had exhausted all options. Our first conversation about IVF happened in September. At the start of our journey, I consoled myself mentally that we were just doing IUI's we weren't going to have to do IVF. Then, when that didn't work I felt like the wheels had finally fallen off and I felt like I had absolutely no control over the situation. January 2019, we started IVF and oddly enough I feel like this part of the journey was so, so much easier than everything that came before. Emotionally, we were nervous
and scared that things wouldn’t work, but we were so optimistic. The chances we’d conceive naturally at this point were put at 1% and with IVF that jumped to about 60%. We had a path, albeit an expensive one, that could work. To add to this, my husband was officially in remission and all those pesky granulomas had disappeared. Today, my hubby is still asymptomatic, but sees a urologist, rheumatologist, and now a hemotatologist on the regular. The injections started at the end of January / start of February followed by a rather uneventful egg retrieval. My body wasn’t an over achiever producing the average number of mature eggs, which resulted in an average number of embryos.
We opted to do a fresh embryo transfer with one of our 4 embryos that made it to day 5. In retrospect, I wouldn’t do this again. My uterine lining was complete garbage. They’d like to see it at an 8 or better and for this transfer it was maybe a 6. *ah, the things you literally never think about before infertility* for 5 days I was pregnant until proven otherwise. On the 5th day after my first transfer, I experienced sudden, very heavy bleeding. I called the on call number and was told it was probably just the start of a new cycle, it wasn’t. My husband came home from work after I called him crying and I’m pretty sure I’d be described at this point as inconsolable. Four days later, I went in for my Beta HCG. It came back positive. On the low end, but still a positive. I was cautioned that it could be a late implanter or, more likely, that I had already lost it/ it failed to implant. Two days later, that number dropped more. We were devastated. I had to wait weeks before going back for another blood test. Before we could start protocol for our frozen transfer my number had to come back as not pregnant. Weeks passed, the number came, and we started again. After being on estrogen for 3 weeks my lining had only become a 7.3. I was told that maybe for my body that this was normal. The transfer took place and subsequently failed. At my WTF meeting with Dr.L he was genuinely taken aback by this result. He didn’t expect it to not work,but he had a plan. We started meds up again like we were doing a frozen transfer and instead did a endometrial receptivity array, a lining biopsy that tells you if you’re in your implantation window or not. For this, we did only 10 days of estrogen before checking my lining. On the 10th day, it was an 8. I’ve never been so proud of my uterus in my entire life. The results came back as pre-receptive, meaning that although the norm is 5days of progesterone before transfer my body needed 7. Relief - I felt such relief from these results. Everything that had happened no longer felt like my fault and what was even better, we had a plan.
August 2019, we started the frozen protocol again. After 19 days on estrogen, guess what? Yup, my lining sucked. I was called by the office and told I could stay on it and come in in a week to be checked again. I expressed concerns and ended up chatting with Dr.L the same day. At this point, he clearly knew me pretty well because he was concerned that even if I came in in a week and it was better that I’d be suspicious as hell (who?! Me?!). He put me on progesterone for a few days to basically reset my body before agreeing that we could try my hair brained idea of the same estrogen dose but shorter time span. Why was I so admit about this? No idea, but I was chasing the ERA lining dream.
End of August, I was on estrogen for 8 days before going in for a lining check. It was a 7.8 and we were a go for transfer. I’m pretty sure that this was the lining check my husband went with me for. I kept a straight face until we got to the door to leave and then threw my fists up and started crying I was so happy. With this cycle, I was also doing acupuncture. I had done post transfer acupuncture for our fresh transfer and I find it incredibly relaxing so I figured why not. I continued with acupuncture a few times a week and before and after transfer on day of. On August 29th, we transferred one of our two remaining embryos. “Third times the charm,” Dr.L said when we met that day. We left, tried not to worry, tried to just be happy. On September 4th, our wedding anniversary, I did a home pregnancy test and it was positive. Over the next few days, that line got darker and darker but still we didn’t want to get excited.
What did I learn from this journey? Health issues are scary. Hormones are weird. Fertility isn’t a one size fits all. My husband is my number one person even when he’s driving me insane. He was there for every appointment he could be even if it was a five second check or blood draw. He also would sit on the phone with me (he travels for work) when I did my PIO injections knowing that 1. the injections hurt and are awkward to self administer and 2.
how much anxiety they caused me. He shouldered just as much of this burden and pain but did so mostly in silence trying to be my anchor. Self advocacy is super important as is a good health care team. My parents are actual super heroes. They also showed up as much as possible, financially helped us when the insurance ran out, helped do injections when they visited, and kept the faith even when we were getting tired. Our tiny human is worth every single second of this journey. The moments of despair, sadness, hopelessness, stolen moments, moments filled with envy, injections, blood draws, ultrasounds, and doctors appointments have all led us to this moment where we are so thankful, future focused, and scared out of our minds because we want nothing more than to be the best parents to our little lady possible. Eila, you are the dream we never thought we’d get to see happen and are so, so thankful to be proven wrong.
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