A Long Road & A Late PCOS Diagnosis: Megan's Story

1 in 10 women have PCOS. Around 50% of those with PCOS say they have had to visit two (or more) healthcare providers before being properly diagnosed. Megan is one of those women. This is the story of how she navigated a delayed PCOS diagnosis while trying to conceive.

Article originally published September 10, 2021. Updated September 5, 2024.

In this article:

• Meet Megan & Jeff
• Why They Switched Fertility Clinics
• Finding Answers Through Her PCOS Diagnosis
• The Long Road to Pregnancy
• Transitioning From IUI to IVF
• Their Most Life-Changing Decision Yet
• The Risks of Transferring Two Embryos
• Preparing for Twin Motherhood
• Adjusting to Pregnancy After Infertility
• Megan's Tips for Fellow Fertility Patients
• Don't Underestimate Yourself

Meet Megan & Jeff

"It was always my dream to become a mom," Megan says. "When I was a little girl and someone would ask me what I wanted to be when I grew up, my answer was always 'A mommy.'" But once she started trying to conceive, Megan realized that making that dream come true might be a bit harder than she originally thought.

"My husband Jeff and I have always been on the same page with wanting children," Megan says. What they didn't expect was such a lengthy journey. After nearly four years of fertility struggles, the couple decided to take the leap and call Illume Fertility.

But Illume wasn't their first fertility clinic experience...they'd been down this road before.

Why They Switched Fertility Clinics

Megan and Jeff had been under the care of two other practices prior to finding Illume.

At first, Megan says she felt nervous to leave her previous fertility clinic, worried it would feel like starting over from scratch. But she also felt very 'stuck in the mud' with her current providers and knew a second opinion was likely needed in order for them to find success.

After careful consideration, Megan and Jeff took the leap and switched clinics, trying to stay hopeful as they navigated the next phase of their journey. Once they left their previous clinic, Megan says she knew it was the best decision they had made on their quest to start a family.

L to R: Megan ready for embryo transfer; embryology report post-retrieval; first pregnancy ultrasound.

Finding Answers Through Her PCOS Diagnosis

As with many polycystic ovary syndrome (PCOS) patients, Megan lived the majority of her life undiagnosed. "My OB/GYN's office never diagnosed me, and put me on a medication I never should have been on for nine months - it was really harsh on my body and my mind," she says. "I wasn't actually diagnosed until I was a full year into [fertility] treatment."

PCOS caused Megan to be anovulatory (put simply: this means the body does not ovulate regularly or predictably on its own - a common symptom of PCOS). This made it nearly impossible for her to track ovulation, because most of the time, it wasn’t even occurring.

"I learned a lot about my hormones and the way my body operates because of this diagnosis," Megan recalls. "Everything started to make sense." After making a lot of PCOS-friendly diet and lifestyle changes, she started to feel better, both physically and mentally. "I had been fueling my body with the wrong foods for a long time," she says. "And my hormones were very clearly out of whack."

As Megan learned how to successfully navigate life with PCOS, she continued to search for answers as to why she and her husband were still having trouble getting pregnant. 

The Long Road to Pregnancy

During her nearly four years of fertility treatment (first, under the care of OB/GYNs, and later, reproductive endocrinologists), Megan went through more than 20 medicated cycles. 

Unfortunately, for the first nine treatment cycles, Megan was on a medication that she later found out wasn't appropriate for her PCOS diagnosis. After finding no success with medicated cycles, Megan and Jeff moved on to intrauterine insemination (IUI). But their journey was far from over.

Transitioning From IUI to IVF

After doing five unsuccessful IUI cycles back-to-back, the couple were in disbelief that their next step was now in vitro fertilization (IVF). "But we weren’t willing to stop," she says. "Very shortly after our last failed IUI cycle, we jumped right into our first IVF cycle."

Unfortunately, as is the case for many fertility patients, Megan and Jeff's health insurance wouldn't cover IVF. After they learned they would need to cover the entire cost of treatment out of pocket, they got serious about putting their finances in order.

Megan got creative, enlisting the help of the fertility community she had cultivated online (and off) in order to raise funds for their treatment cycle.

Meet Kristen & Jeff

Hear one couple's journey through infertility and how they battled PCOS and male factor fertility challenges to become parents.

Their Most Life-Changing Decision Yet

After careful consideration and conversations with their doctor, Megan and Jeff decided to transfer not just one, but two Day 5 embryos. "We transferred two embryos to increase our chances of at least one of them 'sticking,' knowing very well we could lose one or even both of them," Megan says.

"We were blessed that both 'embabies' stuck," she says. "We actually didn’t even know if we would have two embryos ready on Day 5 (until we got to our embryo transfer appointment), since only two of our embryos were at the blastocyst stage at that point."

The Risks of Transferring Two Embryos

Transferring two embryos during an IVF cycle is a big decision that requires careful thought and professional counseling. The risks of a multiple pregnancy (i.e. twins, triplets or more) are significantly higher than a singleton pregnancy, which is why our team at Illume strongly advocates for having "one healthy baby at a time."

While multiples can be an exciting, welcome surprise, it is now standard practice at fertility clinics to perform elective single embryo transfer (eSET) in most cases, in order to reduce potential risks wherever possible. 

For some patients paying out-of-pocket for IVF treatment, the risks of a multiple pregnancy may be overshadowed by the knowledge that they only have one chance to achieve their family-building goals.  

L to R: Megan & Jeff announce the good news; at their gender reveal; Megan during pregnancy.

Preparing for Twin Motherhood

When asked how she felt about becoming a twin mom, Megan explained the special significance that twins have in her life: "Ironically, I have been seeing the number 11 everywhere for years," she says. "I never really believed that the universe sends you signs until it became undeniable - 11 was (and still is) everywhere."

Megan and Jeff had previously discussed how amazing it would be to have twins in case they were only able to get pregnant once. "And now we feel twins have always been part of our fate - I was meant to be a twin mama," she says. 

Adjusting to Pregnancy After Infertility

Like many expecting parents who previously struggled to conceive, finally being pregnant was an emotionally complex milestone for Megan. "Navigating pregnancy after infertility has been a struggle," she admits. "The truth of the matter is this whole journey is difficult, from start to finish - no matter where you are in the process."

After building a community of fertility warriors and knowing many of them are still 'in the trenches' of infertility, finding a balance between sharing pregnancy updates and staying sensitive to the needs of others was challenging at first. "It’s really hard to express the ups and downs [of pregnancy] without sounding ungrateful to those in waiting," she says. 

Even so, Megan embraces her progress and tries to stay present as she anticipates meeting her two baby boys. "Every day seems like a marathon and a milestone," she says. "I am learning to give myself a lot of grace as I navigate week to week, and I am truly enjoying every single baby kick and flutter!"

Update (9/4/24): Megan and Jeff's fraternal twin boys, Shane and Dante, arrived via C-section on November 4, 2021. Dante had to spend almost two weeks in the NICU before being discharged, but both boys were healthy and are now thriving, busy toddlers.

Megan's Tips for Fellow Fertility Patients

Throughout her entire fertility (and now, pregnancy) journey, Megan has been incredibly open and honest - sharing her experiences, feelings, and challenges with her online community. 

We asked her to give us her best advice for others going through fertility struggles, and she delivered! Here are a few of Megan's top tips for fertility patients:

Don't Suffer in Silence

"I feel extremely lucky to be living in a time where the science has become advanced enough to help people like me," Megan says. "I am a huge advocate for seeking help, and believe no one should be suffering in silence."

With that in mind, she encourages everyone who is having trouble conceiving to explore their options and reach out to professionals for help.

Trust Your Care Team

When you begin your journey, go in to appointments with an open mind, Megan advises. "It’s easy to go down the rabbit hole with scary statistics, but always trust your doctor and your Care Team, because they always have your best interest at heart," she says. "They want to see you succeed and they want to succeed with you!"

Look Good, Feel Good

While you may not have it in you to put together a nice outfit for every appointment, it can really boost your mood and confidence, Megan says. Like my great aunt always told me, "Get up, dress up, and show up!"

Embrace Community

"It’s important to connect with others who are in similar shoes," Megan says. "I've found so much comfort (and even made lifelong friends) within the infertility community on Instagram - you just have to find your tribe." 

Making fertility friends also reminds you that you're not alone, Megan adds. "Try to soak up each other's wisdom and experiences!"

Don't Hide Your Feelings

"Talk about your happy days, your sad days, and your angry days," Megan advises. "All of your feelings, no matter the day, are valid. Celebrate every single milestone, and take care of your mind, body, and soul!"

Don't Underestimate Yourself

After navigating years of disappointment, anxiety, and physical and emotional obstacles, Megan says she has learned just how resilient she truly is. She now encourages other patients who are still in the trenches of infertility with this new perspective in mind:

"There will be days that are extremely difficult and dark, but you are stronger than all of this," Megan offers. "Rise above it, stay above it, and when it knocks you down, get right back up! You are so much more powerful than you think."

Whether you are in the process of finding answers, working to accept a new PCOS diagnosis, or adapting to big life changes like new motherhood, remember to be kind to yourself, advocate for what you need, and know that you are worthy of support and care.