period. problemS.

🌷Kasey Musgraves has this great lyric, “healing doesn’t happen in a straight line…” That pretty much sums up (in)fertility journeys. 

My period has been MIA for 2.5 years. The last time was before I was pregnant. After our loss, the reason we knew something was wrong was because it wasn’t coming back. Asherman’s Syndrome was the cause of the absentee menses. My uterus was/is scarred. With the scarring, no, or very little, endometrium (aka lining) can form. The endometrium is what women “shed” each month (aka, a period,) but more importantly, it is what an embryo attaches to (which then grows into a baby). In other words, scarring = no endometrium; no endometrium = no period and no possibility of a baby developing in my uterus. Hence, the message I would never be able to carry my own children.

Imagine my surprise when I got my period this week.

There are a couple shocking things about this. First, last year, after my final surgery at Mayo, I was told it was advisable to start IVF, freeze embryos, and start the gestational surrogacy process because my scarring was so severe (multiple surgeons had tried to remove the scarring, but it kept reforming). I was told, it could take decades for any endometrium to be present, if ever. Second, during my second IVF cycle, an ultrasound tech said she was seeing endometrium on my daily ultrasounds during the stim process. On the day of my egg retrieval, my fertility doctor said that my uterus might still form a bit of endometrium, but she didn’t think there was much. Regardless, she would “look in my uterus” when I was put under. When I woke up from the retrieval, she stated that she “couldn’t get through my cervix,” implying that my cervix was too scarred to even get into my uterus. She went one step further to state that I would not get a period, even if my uterus started to form endometrium, because my cervix was scarred, and wouldn’t let it “come out.” I remember thinking that was so strange because my cervix has NEVER been scarred, only my uterus (Asherman’s can also refer to scarring in the cervix, but that wasn’t my condition). Of all the doctors and surgeons that had [literally] went inside of me, not a single one found scarring in my cervix. Either way, at this point in our fertility journey, we were DEEP in the gestational surrogacy process, had already done 2 transfers with our carrier, and that particular retrieval was to get more eggs to make embryos, one of which we wanted to use for the third transfer. I didn’t give her comments much thought.

 I’m giving them thought now.

My fertility doctor never went inside my uterus. She lied. She never tried. Clearly, my cervix is not scarred, otherwise I would not be getting a period.

So, what does this all mean? Good question. That’s all I’ve been able to think about. This past weekend was also Father’s Day. Despite spending time with my dad and Phil, my mind was somewhere else. As much as I wanted to celebrate my dad, and celebrate Phil (who, more than any man I have ever met, deserves to be a dad, and will, 100%, be the most amazing father and thus, deserves to be celebrated) I was irritable and preoccupied by the sudden arrival I never thought would come.

When I told Phil, his immediate reaction was, “I don’t understand. This doesn’t make sense.” He’s right, it doesn’t. Did my uterus somehow correct itself, removing the scar tissue? Did my body somehow correct itself and regenerate endometrium? Not much is known about Asherman’s, it’s extremely rare; it causes infertility, miscarriages, all kinds of terrible things. There are a lot of things doctors try to prevent re-scarring when they discover someone has Asherman’s, all of which are hypothetical solutions (in other words, not proven, medical solutions), and all of which I tried. I have had multiple “balloons” placed in my uterus for weeks after each surgery, (trying to prevent the walls of the uterus from sticking together); I have been on various hormonal treatments that were supposed to help my endometrium regenerate and rebuild. For me, the scarring always reformed, and the endometrium didn’t reform.

The conversation with Phil went further down a dark Alice-in-Wonderland rabbit hole. The only way to know what is going on in my body, is to be put under anesthesia and have a doctor look inside my uterus (again). Surprisingly, this doesn’t bother me (I’ve been put under so many times over the past two years for surgeries and egg retrievals, anesthesia is old news to me.) But it bothers Phil. He worries every time I’m not going to wake up. He knows, logically, I’ll be okay, but I get it, we’ve had so much heartbreak and loss, the thought of something happening to me is unbearable. I would feel the same about him (in fact, I do, every time he drives a car). I’ve been knocked out seven times. That’s seven times Phil has had to stay in a waiting room, worrying about whether I would wake up.

Even more than the fear of having me sedated, is his fear of my hopes getting slashed again. When we lost our son, we were told over and over by doctors that we would be able to have children…miscarriages happen…we’re healthy…we got pregnant, we would get pregnant again. Then, when my Asherman’s was discovered, we were told over and over by the surgeons, that they could fix me, and I would be able to carry. It wasn’t until we went to Mayo, where a doctor FINALLY gave us real advice – I was not going to be able to carry children, and we should explore other options if we wanted biological children. Phil was there every time I got excited for the future, and every time I was faced with a failed surgery, an uncertain future, and my dreams of motherhood being massacred.  The devastation that accompanies the high highs of hope being destroyed over and over again, Phil was right there with me.

I have tried, and failed, to describe what it is like as a woman to have my ability to carry my children ripped away. As woman, even if we choose not to have babies, it is inherent in our physical being, that we can do this remarkable thing – we can create and carry life. When that is torn away, it feels like apiece of your person has been stolen. One of the hardest things I have ever done is accepting I would never be able to carry my children. But when I did, Phil and I were able to move forward in our lives, pave a new path with gestational surrogacy, and see a really bright, beautiful future (even if getting there looked so very different than what we had envisioned for years).

Now, Phil is seeing this little glimmer of hope in me [again]. I’m getting my period. In all the years of medical procedures, tests, surgeries, new protocols, theoretical ideas…. I never got my period. What if my body CAN carry a child? I keep telling myself, this is so unlikely, but Phil is 100% correct, I’m starting to have hope.

Despite my spark of hope, I am not wearing rose colored glasses. The reality is my uterus is almost certainly still scarred. Maybe it’s not completely scarred, but any scarring will prevent pregnancy. And more importantly, even if I technically got pregnant, if there is scarring, I would be at an extreme risk of miscarriage. Even writing that is scary. The idea of putting myself, my body, and Phil in the position of another loss, is unimaginable.

This whole situation brings up so many questions. The obvious – what is going on with my body? But also, the “what ifs” – what if I got pregnant? (I’m not on birth control because I was told I couldn’t get pregnant.) What risks am I facing…what risks am I subjecting a potential baby?

Unfortunately for Phil, the only way to get any answers, is for me to be knocked out for an eighth time.

Infertility journeys don’t have a start and stop. Once you are in one, it will impact you for the rest of your life. The struggle is real, but there can be beautiful moments (finding a gestational carrier, hearing that first heartbeat, seeing your husband talk about being a daddy,) but there are also so many unknowns. So many questions, always. Phil and I thought we knew what we needed to know – my body was broken, so we were always going to need a carrier. Now, my body is acting “unbroken,” we still need a carrier, but we don’t know what is happening once again.

Even when we thought we had a clear path forward, we have been thrown back in the gray, uncertain area, and the only way to get answers is to put our trust in the same people that put us in this position in the first place.

In other words, To Be Continued…..🌷