Our infertility journey & PCOS

After reevaluating the purpose for these posts, I’m sharing a severely emotional and fragile story of ours that has been writing itself the past 2ish years. I write and share on here not to gain followers, not for an income and most certainly not for your approval. My goal is to share these things not for the majority, but for the one person who may need to read this. I’ll preface and say that about a year ago, I was the one who needed this story and these truths.

*Before you continue, please know i’m about to share personal details regarding birth control, conception and infertility details .*

I’d like to start in January 2019, when I officially stopped NuvaRing birth control. A little background in a quick summary: I got on birth control in 2017 to try and regulate my irregular periods. I was having very heavy and painful menstrual cycles that were consistently irregular. I initially tried the pill, but it made me severely nauseous. I then switched to NuvaRing, which did not make me nauseous but certainly never worked great for me and I still had very painful periods and no relief with acne or other symptoms that I thought it may improve.

Okay, back to January 2019. I was told that it could take a bit for my body to regulate and have a “normal cycle”, but after multiple months of no period I started to become concerned. During this time Ben is having residency match and we are in the process of moving to North Carolina. I schedule an appointment with my OB in Indy the day before we moved as I knew it would probably be a bit before I could get connected with a new doctor. Not much came from my appointment other than that I was told my body was still adjusting to coming off birth control.

Fast forward to July. I had started spotting in June and had continual spotting for months. I found an OB in Greenville and made an appointment to see what could be going on, I was fairly convinced that this could not be normal. Once again, I was told my body was just taking longer then most adjusting back to a “normal cycle.”

It’s now September 2019 and still no period or normal cycle, just occasional spotting. At this point I was very frustrated as we had been “trying” to start a family since January, but here I was not having cycles and clearly not capable of conceiving.

I called my doctor, made another appointment and demanded to get all the bloodwork done. About two weeks later as Ben and I were test driving a Jeep truck for fun I got a call back from my doctor. I was tempted not to answer for the sake of having an awkward conversation in front of a complete stranger, but I had been waiting to hear back for two weeks so I picked up.

“Hello, is this Tianna Ryan? So we got your lab results back and it appears your prolactin levels are unusually high. I’m going to refer you to an endocrinologist in Raleigh to follow up and get you checked out because I believe you may have a prolactinoma, which a basically a noncancerous tumor on your pituitary gland. Sound good?”

Me: ” Oh..okay…well thanks?”

I hung up the phone and the world was suddenly a big blur. I wanted out of that car, I wanted to be anywhere but sitting shotgun on a stupid test drive we were doing for fun, not because we were actually going to buy the dang thing. We got home and I tried to recollect the complex words to Ben the best I could. We sat at our dining room table and Ben to his best abilities tried to explain to me what exactly a prolactinoma was and all he knew about it.

We scheduled the endocrinologist appointment on a day Ben was able to go, as my doctor assured me I shouldn’t go alone (thanks for the confidence Doc). We pulled up to a tall building and made our way to the third floor, which was called a “fertility clinic”. I became even more confused. I thought I was here to see a specialist about a possible tumor on my brain, not a fertility clinic. We waited for what seemed like hours before being called back to a doctor’s office and sat down with two of the doctors. She started going on about my hormone levels and too be honest I was having a very hard time tracking. What I remember was that she was pretty confident my prolactin levels weren’t high enough too be concerned about a tumor, but she was fairly positive I had PCOS and that they were going to do an ultrasound to confirm.

We go and get the ultrasound and as the doctor said “my ovaries were textbook PCOS.” Thanks for the compliment I never wanted. I left that day very confused. Relieved to know there most likely wasn’t a tumor on my brain, but even more clueless what exactly PCOS was and what it meant for our journey of trying to conceive.

Moving forward I started taking letrozole each month, starting at the lowest dosage. I had to drive to Raleigh to the clinic on specific days after taking it to get an ultrasound to basically see if it was working. Month 1 & 2 at 2.5 mg and my body wasn’t responding. Month 3 & 4 at 5mg and although my body responded the follicles that did develop weren’t big enough to ever turn into a pregnancy.

At this point I’m drained. Driving back and forth to Raleigh by myself only to be told that it didn’t work over and over. The absolute worst part though, is having to take a pregnancy test every month and seeing the negative every single month. I felt like each time I saw that (-) I lost hope for the family I dreamt about, the pregnant belly I longed for, being a mother seemed to be slipping further away from being possible.

I was warned before starting treatment that normally letrozole treatment is only given for so many months and then take a break and reassess other options. For us, we knew IVF would never be an option because of personal choice and beliefs so letrozole was our only medical route of trying to kick my reproductive system into normality.

It was the sixth cycle of taking letrozole (at 7mg at this point) and I had decided it would be my last attempt before taking a break. It was tearing me apart mentally and ultimately taking a toll on not only me but us.

At this point I had started and even gone through a grieving process. My body wasn’t responding to the medicine even at the highest dosage, so all hope was gone and I was almost at the point of acceptance. When I found out I had PCOS I was so angry. Angry that my body wasn’t performing a function that is suppose to be part of being a woman and now it was failing to respond to a drug that my Doctor pretty much guaranteed would work.

On June 17th I took a pregnancy test after we had returned from a family beach trip. I was two days late, but that didn’t really mean anything because if the letrozole didn’t work I wouldn’t have a period anyway so I was not at all suspecting any possibility of a positive result. To my complete surprise that horrendous white little stick that I had learned to hate revealed the most shocking and miraculous sign. I didn’t know what a positive pregnancy test looked like but for some reason I didn’t feel the need to take another. It felt like a miracle and I fell to the floor in disbelief.

Ben had gone in for his shift so I waited until he got home late that night to share the news. Of course he claimed to have suspected it, but we both sat in complete awe and happiness dreaming of this little nugget and our life as a family of three. It hasn’t been smooth sailing by any means, but every day I wake up and feel like God has truly blessed us with this gift of life growing inside of me. (See my previous post for a pregnancy update)

Alright, to the main point of this post. Yes this journey was hard for the obvious reasons, but I struggled immensely with handling comments from the small circle that walked along side us during all of this. For the sake of all of those who have had a similar experience or may be going through it currently let me enlighten you on things that may have “good intentions”, but ultimately are very hurtful.

DO NOT SAY

“You’re young, you have plenty of time still.”

“You just gotta trust God’s plan”

“I’m sure it will all work out in time.”

“Are you sure you want to go down this path?” (Questioning the medical route a couple has chose)

“The medicine hasn’t worked yet so you haven’t really even started trying.”

“Well, it could always be worse.” (compares your situation to another)

These comments were all said to me with the purest intention of being helpful, but in all honesty that is what’s wrong with cliche christian responses to these type of things. First, if someone comes to you and openly shares information that is private and sensitive realize that they are entrusting you with this and please be respectful of sharing with others unless specifically asked by the person this story is actually about. Secondly, they probably aren’t sharing this with you for advice unless they are asking specific questions. The problem with the responses that we so often receive is that they create a sense of guilt/shame for having doubts or grieving and take away from the feelings that we are so deeply sitting in.

Find that person where they are and acknowledge that their situation is really hard and the emotions they are feeling are valid.

What I needed was someone to tell my I was worthy of being a mother and unfortunately that never happened. So as random and scattered as this post may seem I tried my best to gather my thoughts for that one person that I hope stumbles upon this who really needed it.

I see you and you are worthy. As always my email is available to the right of this post so feel free to reach out or comment below. Thanks for reading this, as uncomfortable and hard it was to share publicly I sure do hope to help.

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