Interview with Danika: PCOS & the need for Support Systems
Danika, 28, Canada.
“I am a dog mom of 2, cat mom of 1, wife, daughter, sister, auntie, and miscarriage mama. I work in the nonprofit sector and I love spending my time with my family, I love a cold glass of red wine, I love the feeling of laughing until you cry and I live for days filled with sunshine and the little moments that genuinely make you feel grateful to be in them. Oh - and I cannot forget to mention my love for a McDonald’s fountain Diet Coke!”
Thank you for joining us Danika! Tell us about when you started trying, how did you know something was wrong?
I was passively told by my healthcare provider in my teens that on ultrasound I had cysts on my ovaries. They noted it could be a result of PCOS, it *could potentially* lead to troubles conceiving, but they never did further investigating or formally diagnose it. That was really the last that it was mentioned for a decade - I was nowhere close to wanting to have children at that time and somewhat brushed it off.
When my husband (then boyfriend) and I began discussions about having children almost 10 years later, I went off my birth control and we started by not actively making attempts to prevent pregnancy.
After about a year and a half of trying, I was so worried that something was wrong that I couldn’t yet bring myself to go seek further support. I kept trying to create excuses for why that month wasn’t successful, and convince myself the next month would be. I was terrified of the idea that becoming pregnant wouldn’t be as simple for us as it had been for those around us.
I finally went to the doctor after having a period that continued on for a few weeks. I explained that we had been trying unsuccessfully, my cycles were irregular and I was afraid something was wrong. She noted based on the length of time we had been trying to conceive, she would be diagnosing infertility and referring me to an OB/GYN. It felt like both a relief and a walk of shame leaving that appointment. I felt so defeated but also hopeful that we would be able to seek treatment options and get pregnant right away.
It can be so frustrating when our medical care isn’t taken seriously when we are younger. What have you learned since then about the causes of your infertility?
Our infertility was diagnosed by my OB/GYN, and later by our fertility clinic, as a result of PCOS with the symptom of annovulation. They each completed blood work over the course of several months confirming my body was not ovulating on its own.
I’ve learned that PCOS is frustrating in that what works for one person with PCOS is not guaranteed to work for another. I’ve tried vitamins, diets, a variety of lifestyle changes and after completing blood work following, am still not seeing positive results in terms of ovulation. It often feels like you are throwing things against the wall to see what sticks, but nothing does.
How did it feel to finally get that diagnosis?
It felt helpful and affirming to get a concrete diagnosis as to what was causing our fertility issues. There are so many unknowns when it comes to infertility, pregnancy loss, and this entire process. It felt like we finally had something to go off of in terms of planning our next steps.
What has changed… I’m less curious as to why I get so many chin and neck hairs that need waxing! LOL. In all seriousness, my overall approach to my health has changed. I make a concerted effort to move my body more, even just increasing the amount of walks I do in a week. I’ve adopted a vegetarian diet which, in my case, is both for health and ethical reasons. The biggest thing impacted has been the change in how we address our fertility issues and family planning. I know I don’t ovulate naturally - on cycles we aren’t actively doing fertility treatments, I’m not constantly wondering if we got pregnant, taking pregnancy tests twice a day or being (as) hard on myself when we aren’t successful. It allows me to give myself and my body a bit more grace in this journey.
You've shared with me that you and your husband are apart a lot for work. How do you keep your relationship strong throughout all of this?
Throughout all of 2023 so far, we have seen each other 12 days and it’s towards the end of March now! Being apart for such long periods of time isn’t all rainbows and butterflies, but we have built such a solid foundation of love, trust, and support for each other. As much as I’d love to be able to spend every day together, I’d rather the distanced relationship we have than a close one with anyone else in this lifetime.
I think what makes it work is that we are each other’s biggest cheerleaders. He knows that being in such close proximity to my extended family is what makes me feel so fulfilled in life. I know that his career makes him indescribably happy - who doesn’t want a job where they go to work every single day and truly love what they do?? Unfortunately for us, those two realities don’t intersect in the same location - not for a lack of love for each other or a desire to be in the same place.
We text all day long. We call each other to say goodnight. We absolutely cherish and soak in the moments where we are in the same location. I think anyone whose partner works primarily out of town/province/state can relate to the fact you make it work because you have to, and it’s not anyones ideal, but it makes you appreciate the time you do have together so much more.
It sounds like you have such a wonderful foundation - so important in fertility challenges. What have you done most recently to address your infertility?
I’ve completed an HSG test, an endometrial biopsy, many ultrasounds and heaps of blood work in confirming our infertility diagnosis. My husband has done a semenanalysis along with blood work.
We have done 6 rounds of Letrozole with timed intercourse - 5 of which were unsuccessful and 1 was successful but ended in a miscarriage at 5w3d.
We recently froze a sample of my husbands to be able to complete IUI cycles with him being out of town. Unfortunately, the cryopreservation procedure wasn’t successful and we weren’t able to use the sample for future cycles.
Right now - we are on our 7th Letrozole cycle. I am CD8 and finished my last dose yesterday. I am flying out to where he is working during the window I typically ovulate on Letrozole as one last-ditch effort of the medicated timed intercourse cycles! If unsuccessful, we are looking at Summer 2023 to try to freeze another sample and move ahead with IUI cycles.
What do you wish more people knew about what you have been going through?
I wish there was more education surrounding infertility and pregnancy loss. In my sex ed in school, the emphasis was on how *not* to get pregnant, which is also important, but infertility and miscarriages were never discussed.
I wish peoples first reaction to hearing someone struggling with infertility wasn’t to give them unsolicited advice. Infertility is a tough freaking journey. When folks try to talk about it and make it more commonplace, they’re often met with:
“You just need to go on vacation and it’ll happen”
“Just relax. Stress is what’s causing your infertility”
“My second cousin did XYZ and it worked for them - you need to try it”
“You can just take my kids!!! Hahaha!”
“It’s God’s Plan”
“Get drunk and you’ll get pregnant”
I think it will take a lot of work to change the narrative that infertility is solely because of reasons that are within the individual or couple’s control. People need to recognize that infertility is a diagnosed medical issue, it’s a disease.
Yes, there will be the cases where someone struggles with infertility and spontaneously gets pregnant. There always will be. But those are the exception - they aren’t the rule. People feel less inclined to talk about their struggles when they are constantly met with unsolicited advice, platitudes and hope peddling. People need to meet folks where they are at and not assume they have this magical cure to someone’s infertility because it worked for their neighbour they lived beside in 2009.
Who are the greatest supporters to you throughout this journey?
I am beyond fortunate to have so many folks who support me in this journey.
My Mom - She was the person whose house I drove straight to on a Friday morning when I got my positive pregnancy tests.
She attended my follow-up pregnancy appointment with me when my husband couldn’t. She heard that my pregnancy was not viable at the same time I did. I still don’t know how I made it through that day; but she was with me through it all.
My Husband - he’s not only an active participant in this journey, but a huge support. The number of times he has *literally* picked me off the floor when I was in a puddle of my own tears. Infertility has given us such a bond in both the best and worst ways.
My Family - Everyone has allowed me to share our infertility journey, unfiltered. It’s amazing to have a vast support system to lean on and I am so grateful.
My Boss - I feel like an unexpected mention. She has allowed me to be transparent in what I am going through, what I need, and rooting for me every step of the way. I know telling your employer you are doing fertility treatments is not the right choice for everyone. But I cannot imagine a reality in which I could feel more support from a boss than she has given to me. I’m very, very fortunate.
The TikTok Community - I started posting about our infertility journey out of desperation to feel connection to those who *get it*. I have made lifelong friends and am constantly in awe at the number of folks who validate my feelings and help me feel supported, and vice versa. Putting yourself and your journey out into the entire internet is scary but has been so rewarding overall.
Anything else you would like our readers to know about your experiences?
Infertility changes everything. The things you want it to, the things you don’t. Not having control over your own life and future is terrifying because we only get one lifetime, as far as I’m aware. It’s the worst club with the best members and I wouldn’t wish this path upon anyone.
Cry when you need to. Celebrate the little wins. RSVP ‘no’ to that baby shower if it’ll protect your heart to do so. Be as blunt as you want when people ask “so when are you having kids?!?”
Hold on to hope but not to the point that you need it to breathe. No one knows what the outcome of this journey will be for them. And that is fucking terrifying. Regardless, know you have an entire community rooting for you. I know I am
