How do we navigate fertility planning with a chronic condition — without panicking?
😱🎙️ Let’s talk about cutting through fear-based decision making and reframing absolutes when dealing with conditions like PCOS, endo, and fibroids.
Many of the conditions we’re focused on at MyAdvo like PCOS, fibroids, endometriosis, and adenomyosis impact fertility. Whether it’s our ability to conceive or to carry a pregnancy to term.
I’ve heard a range of stories from women who’ve been diagnosed and are either immediately told they may never be able to get pregnant and they should consider IVF — or are never told about how their condition could affect fertility.
In my case, at age 21, I was told that my uterine septum would probably prevent me from carrying a pregnancy to term — with a high likelihood of miscarriage. In fact, my OB/GYN said that most women didn't find out about their septum until they tried to get pregnant and experienced a miscarriage. This ends up being the reality for many people: not getting an official diagnosis UNTIL running into issues trying to get pregnant.
In honor of National Infertility Awareness Week, which just ended, I’m thinking a lot about what preventative care could look like for fertility.
Ideally, people could rely on their providers to share the realities of fertility planning and present the options available in an unbiased, straightforward way. This information could help empower patients to make their own decisions based on their goals. But tone is critical. The way a doctor approaches the fertility preservation conversation with a patient who’s just been diagnosed with endometriosis, for example, makes a huge impact on how much agency the patient feels when deciding what to do next.
During an emotionally and physically stressful situation, it’s even more overwhelming to add the pressure of a theoretical biological clock, which is often reinforced by not just doctors but TikTok influencers, movies and TV, even from well-meaning friends or family members. “Freeze your eggs by 30.” “Endo means IVF is your only option.” “You’ll regret waiting.”
For someone who hasn’t yet thought about when or even if they want to become a parent, having an open conversation with a trusted resource who isn’t framing the scenario in absolutes is extremely valuable. Because it’s hard, if not impossible, to make grounded decisions from a place of fear or panic. The reality is that there ARE options and they look different for everyone for a whole range of reasons. For example, IVF is expensive and often not covered by insurance. For some, going straight to a reproductive endocrinologist for fertility assistance is the option they want. For other women, working to get to the root cause and supporting their bodies with diet and lifestyle modifications before conceiving is their preference. It’s not about prescribing what’s best, it’s about tailoring the journey to your individual needs, which means having choices — including the ability to change your mind.
Fertility in stats
Only 12% of patients experiencing infertility need IVF. Many conceive through less-invasive and lower-cost treatments.
The cumulative pregnancy rate over multiple cycles of non-IVF treatments such as ovulation induction and timed intercourse or IUI (intrauterine insemination) can approach 40–50%, which is comparable to one IVF cycle for some age groups.
About 25 to 50% of infertile women have endometriosis, and 30 to 50% of women with endometriosis are infertile, but women with endometriosis still can get pregnant spontaneously.
When it comes to PCOS, it’s estimated that 70-80% of women experience infertility. It’s also important to note here that many women with PCOS can still conceive naturally or via less invasive medical interventions like ovulation induction.
There isn’t as much research on adenomyosis, but there is a pattern of lower clinical pregnancy rate, higher miscarriage rate, and a lower live birth rate. It’s also noteworthy that 90% of people with endometriosis also have adenomyosis.
With fibroids, the issue is more about implantation of the embryo and depends largely on the size, location, and number of fibroids. Many women can still have a healthy pregnancy although some fibroids can cause complications like preterm labor or the need for a C-section, which is important to discuss with an obstetrician.
Secondary infertility, which is the inability to conceive after previously giving birth, happens to 11% of couples in the US and accounts for more than half of all infertility cases in the United States.
Male factor is solely responsible for infertility in 20% of cases and contributes in up to 40%.
Knowledge is power.
I’ll admit that I was angry and frustrated to be told at 21 years old that I had to think about my fertility. I was frustrated that I needed surgery in the first place. Why was this happening to me? It wasn’t happening to any of my friends. Why did I have to go through something so scary before I was ready? It was my decision when to get the septum surgery, but I was advised to get it a few years before trying to conceive to account for recovery time and the emotional stress of trying to get pregnant immediately thereafter, if that ended up being my plan. I knew I wanted a family, but I hadn’t yet given it much thought, and that “one day” seemed very far away. I first wanted to build a career, find a partner, and live LIFE before even thinking about that chapter.
Looking back though, I’m grateful I had over five years to process this information before deciding to get the septum surgery. As a twenty-something, I was able to make an informed decision to wait until my mid-thirties before thinking about having children. I thought that I would probably want two children, which meant I’d likely try for a second in my late thirties. I also decided that I wanted children with or without a partner, but if I did it without a partner, it would likely mean having children closer to my late thirties or early forties. It was with that mindset that I decided to save up and freeze my eggs.
Time went on and I got diagnosed with fibroids, adenomyosis, and PCOS, which presented their own reproductive challenges. I actually wasn’t told much about how they would affect my fertility. However, the initial conversations with my doctor, and the decisions I was originally frustrated to have to deal with, helped me hold on to the feeling of being in control of my fertility. It spurred me to research how my new diagnoses impacted my ability to get pregnant and further dictated when I wanted children and how I wanted to maximize those chances.
This is my personal experience — which is just one example across a huge spectrum of experiences. I’m sharing this because I think it’s important that fertility be something we speak openly about as part of general health education without framing it in prescriptions or absolutes. Knowledge affords us time and illuminates options.
But what about when you haven’t had years to think through fertility options? Or it’s been several difficult years of trying to get pregnant, maybe including losses, and you’re only now getting an infertility diagnosis? How do you make informed decisions under such pressure?
Tips from the MyAdvo community for taking control of fertility decisions:
Take note of whether you’re feeling rushed into a decision because of outside pressures, a lack of options, or if it’s because it’s what you really want.
Discuss your preferences with your partner or a friend, such as if and when you ideally want to become pregnant, how many kids you want, your budget, etc.
Ask your doctor about why they recommend a certain protocol or what additional alternatives may be available.
Ensure your partner is also evaluated for fertility.
Consider getting a second opinion, especially if treatment still doesn’t feel right.
I’d love to hear your thoughts, experiences, or any other tips you have for putting it all in perspective.
MyAdvo is also collecting stories and anonymous anecdotes about how to advocate for care when it comes to fertility, particularly around:
wanting to have children
making the decision to be childfree
being told early on that getting pregnant will be difficult, even if you’re not trying yet
finally getting an answer for why and being left with the question of what now?
…and/or whatever else you’ve experienced
Email your stories and comments to me at esther@hellomyadvo.com and check out this month’s Advocacy Snapshot for a first look.
In this issue
MyAdvo community news
Advocacy snapshot
Women’s health in politics
Reflection question
MyAdvo monthly reads
MyAdvo community news 👥 💭
📣 I’m excited to announce the official launch of the MyAdvo blog!
In a particularly poignant first post, MyAdvo member Cait Reeves opens up about her long journey to endometriosis diagnosis and recovery — another example of why it’s so important to listen to our bodies and to keep pushing for the care we need.
👉 📚 Resources to support fertility planning and informed decision making:
…and more available for download at HelloMyAdvo.com.
💬What we’re talking about 🗣️
In our members WhatsApp chat, we have a few different channels so people can connect more deeply by condition.
Here are highlights from the PCOS chat this month:
What even is a “normal” cycle length?
How symptoms manifest when we feel like we’re making all the “right” lifestyle choices
How to get regular testing done — and with whom
Comparing PCOS online health services
Join the conversation by becoming a MyAdvo member.
Advocacy snapshot: fertility shamed by my doctor
A MyAdvo member shares her experience.
THE ISSUE
Dismissive, shame-driven fertility advice after an endometriosis diagnosis
THE SITUATION
I was searching for the right doctor to perform my endometriosis surgery, and I met with one doctor in particular who was very insensitive to my needs. I was adamant about preserving my fertility, but she told me I would likely need to remove my right ovary and fallopian tube with the probability of also having to remove the left side depending on the severity of my endometriosis.
She also told me that before we scheduled the procedure I would need to freeze my eggs to ensure I have at least some insurance that I could have a baby in the future.
I was devastated. I cried. But her response to me was “if you had already had your kids by now this wouldn’t be so difficult.”
SELF-ADVOCACY PROCESS
At 32, I felt like I was being shamed for not having kids yet and my punishment was endometriosis facing a possible hysterectomy.
I eventually met with a reproductive endocrinologist who advised a completely different protocol and said that I wasn’t a candidate for egg freezing anyway because of the size of my endometriomas.
THE OUTCOME
For over two years I was going crazy trying to find the right doctors who would listen with compassion and understanding. I eventually did, but the trauma still haunts me.
Women’s health in politics
Kicking it off with a win, ICYMI: House Speaker Johnson was thwarted by new moms in his attempt to block a proposal that would allow parents in Congress to vote by proxy as they care for newborns. Nine Republicans joined Democrats to keep the proposal alive.
While there continues to be an influx of women’s health-related bills at the federal level concerning issues including Medicaid, contraception, maternal health, PCOS, fertility, breast cancer, child care, and trafficking, it also feels like an attempt to distract and overwhelm the masses with legislation that perhaps won’t even make it out of committee.
Ultimately, for me, it underscores how important it is for us to continue to make our voices heard in our fight to retain our right to choose — whether with regard to fertility planning and reproductive care or simply our ability to access healthcare.
📤 Write to your Congressperson
Women’s Health Advocates, a bipartisan advocacy group, is asking people to contact their Congresspeople in support of the following initiatives:
$5 million for Women's Health Innovation Program at the FDA
$200 million for Women's Health Research
If you have a few minutes, visit this site and add your address and ZIP code to be connected to the right place.
New York State Initiatives to Protect Reproductive Freedom
While everything feels out of control, we shouldn’t overlook the impact we can have on a local level. For example, as part of New York State’s 2025-2026 budget negotiations, there are several key proposals that seek to codify reproductive rights and secure funding.
Reproductive Freedom and Equity Program: The Executive Budget proposes $25 million to support abortion providers and nonprofits. The Assembly seeks to increase this to $37 million, allocating $2 million specifically for clinical training of reproductive health providers.
Flexible Funding for Abortion Access: A proposed $20 million fund would help providers adapt to potential federal policy changes and ensure fair reimbursement for abortion services.
Infertility Treatment Coverage: The budget includes nearly $5 million to expand Medicaid coverage for infertility treatments, including IVF.
Ending Mandatory Abortion Reporting: New York State is actively considering legislation to eliminate the mandatory reporting of abortion patient data — a requirement unique to abortion services among healthcare procedures.
If you’re a New Yorker, there’s still time to contact your representatives and assembly members. If you’re feeling the itch to act, I encourage you to check out opportunities to make an impact in your local community.
💭 Reflection question🪞
I want to leave you with something to think about — maybe even start a discussion with friends about over dinner tonight:
How do you sift through the pressure of absolutes to make decisions true to you?
🔖 MyAdvo monthly reads
From policy to podcasts, research updates, trends, and other news to support your self-advocacy journey.
🌐 Milken Institute Launches New Women’s Health Network to accelerate breakthroughs in women’s health through global lifesaving research.
✂️✅ Funding was cut — and then restored — for landmark study of women’s health
🧪Trump officials quietly move to reverse bans on toxic ‘forever chemicals’
👮Georgia Woman Arrested After Miscarriage Amid Growing Criminalization of Pregnancy
☕Major endometriosis study reveals impact of gluten, coffee, dairy and alcohol (Study linked here.)
🔭Driving Fertility And Perimenopause Innovations For Women’s Health
🥗Mediterranean diet lowers breast cancer risk by 13%, postmenopausal women benefit most
🥼New reproductive health restrictions have not driven OB-GYNs out of states with abortion bans