A little over 2 weeks ago, I packed my bags and flew down to San Francisco, CA to gather with an amazing group of men (okay, man) and women who are passionate about making a difference in our infertility communities.
(Sidenote: Our friends from FertilityIQ.com, Jake and Deb, made this all possible. Their passion for the infertility community amazes me. Jake and Deb have beat infertility. They have the sweetest little 4 month old son, Lazer, but it took work for them to get there. They struggled themselves, faced loses, and realized the infertility community needed a unified voice to help them get from here to there. This family did NOT have to start FertilityIQ.com. (A free service where patience leave verified reviews on their doctors anonymously so that other potential patients can select the right clinic for them from the start.) This family did NOT have to fly us out to CA and sponsor this FertilityIQ Basecamp, host us so graciously, and advocate to get us into some of the best conversation spots possible. They didn’t have to – but they did because they care. And that, my friends, is pretty awesome. In no way is this post, or any of my continued work with them sponsored. It is my personal opinion that they are the bees knees and if you haven’t already left a review on your clinic on FertilityIQ.com, I would run, not walk, over there to do so.)
Okay, back to the Basecamp:
Our stories all look different. Some of us have pursued IVF treatments, others haven’t. Some face male factor infertility issues, PCOS, recurrent pregnancy loss, while others are labeled with the big old “unexplained” stamp. Some of us have experiences miscarriages, some have beaten infertility, and others are still patiently waiting for their miracle. Each face around the table held a story – and represented an army of women with questions that needed answering. In addition to our awesome hosts, Jake and Deb, meet Caroline, Elisha, Lisa, Nikol, Katie, and myself. Once we said hello, it was like we had known each other all our lives, and the chemistry came alive. And so, we rolled up our sleeves and got to work.
Remember that survey I asked you to fill out earlier this summer? Well, you guys filled it out in DROVES. (We drew our $125 Amazon winner in San Fran and because there were so many responses, we decided to draw TWO names! A huge congrats to Leanna D. and Jane R. for being our winners! I hope you are already spending your winnings in fun ways!). And what was so interesting was that out of the HUNDREDS of responses, there were some really identifiable themes – questions you all asked – and so we took those questions, set our agenda, and here we are!
Now, there is A LOT of information to be shared. And I want to dish it all out to you in digestible pieces, so watch for many other posts to come in the weeks ahead. However, for today, I want to chat with you guys about the themes we saw, who we met with, and then point you in a direction today to read a summary of all these meetings from the eyes of the different ladies around the table. Will all of the FAQ’s be hit today? Probably not, however, you have the chance to blog hop and learn A TON! Then I will spend some time tackling each of these highlights for you too, so feel free to leave more specific questions below if you have them, so I can be sure to answer!
Here are the main grouping of questions that you asked:
- COMMUNITY / SUPPORT NEEDED
- FINANCIAL ASSISTANCE, GUIDANCE, INSURANCE, EXPENSE
- 3RD PARTY NEEDS – WHAT DO I DO?
- EMOTIONAL SUPPORT – HOW TO GET IT AND WHEN
Looking at this list, more specifically, the themed MEDICAL questions asked were:
- Why is there so much disagreement between doctors on tests, protocols, treatment order
- Why are the costs so high and success rates so low?
- Why is unexplained so frequently a diagnosis &; what should one do with that?
- How do you think about when to progress from IUI to IVF to donor egg to deciding to live child-free?
Lifestyle & BMI:
- How much of a role does BMI play in success rates (does 25% vs 30% vs. 35% make a difference)?
- How does diet choices (specifically: gluten free, red meat, organic) play into fertility?
Recurrent Pregnancy Loss:
- After how many miscarriages should they get genetic testing?
- What role does immunology play in infertility?
- What about Natural K cells? A lot of women are being diagnosed and treated for it.
Male Factor Infertility:
- Why would my husband’s sperm count go from high to low with no obvious cause?
- Talk to me about varicoceles. Is it genetic?
- With Male Factor, when is IVF necessary and when is it not necessary?
- What can a man do to boost his sperm count, or improve his motility or morphology?
- Besides adjusting the diet, what else really works for PCOS patients trying to get pregnant?
- What are the most promising tests or treatments for PCOS?
- Any promising treatments coming for endometriosis?
What better place to get these answered then by meeting with the top doctors at Stanford Medicine?! We first got to spend some time at their embryology lab, watching freshly retrieved eggs just post ICSI, and observing where the embryos are stored and monitored carefully. We then sat down with Board Certified doctors, like Reproductive Endocrinologist, Valerie Baker, MD and Urologist, Michael Eisenberg, MD and asked your questions. Want some answers today on what our time there looked like? HOP ON OVER TO NIKOL’S BLOG NOW TO READ HER FULL REPORT ON OUR TRIP TO STANFORD!
We then looked at your questions about forming and finding community, specifically looking at the TTC community that’s formed on Instagram, and how we can maximize it! So what better place to visit then the Facebook and Instagram campus, and spend some time talking with the Director of Community at Instagram! We had a blast there! (And seriously, what a dream job! The campus alone is insane. Rock climbing walls, tennis courts, FREE FOOD EVERY WHERE (you seriously don’t pay for anything!), tons of coffee shops and ice cream shops (again free). The campus looks like the Main Street of Disney World, filled with people doing bike meeting or walking meetings, pop up boutique shops, etc. Such a cool place to see!). To learn more about what our conversations were like at Instagram, HOP ON OVER TO CAROLINE’S BLOG NOW TO READ HER FULL REPORT ON OUR TRIP!
Next, the financial questions – and those were endless! I am giddy to get into all the details of this meeting. We got the chance to meet with a highly reputable clinic, (privacy given), to discuss “Saving Money When Going Through Treatment”. The tips and tricks she gave us were INSANELY awesome. We KNOW finances hold you back from seeking the medical care you need. We know insurance companies are terrible at providing coverage to those in need. We want to help you find ways to making it more reasonable and affordable. I will say, there’s still a lot of work that needs to be done here, but we got some solid saving money tips for you to start! HOP ON OVER TO KATIE’S BLOG NOW TO READ HER FULL REPORT ON OUR CONVERSATION!
One area many of us didn’t have direct experience with, was 3rd Party Reproduction (ie: donor eggs, donor sperm, the need for a surrogate or gestational carrier, and embryo adoption). Great news though, we brought in Donor Concierge, a husband and wife expert team, Gail Sexton Anderson, Founder and Terrell Anderson, COO to get the scoop on how this process works. It was fascinating and I walked away with so much insight on the process. HOP ON OVER TO JAKE AND DEB’S BLOG NOW TO READ THEIR FULL REPORT ON OUR MEETING WITH DONOR CONCIERGE.
And lastly, we had to tackle the emotional questions you guys asked. Questions like:
- How do I find local support?
- When is the right time to see a counselor?
- How do I know when it’s time to walk away from this journey and find peace living child-free?
- How do I protect my marriage during this time?
- How do I grieve properly?
Ohhhhhh, friends who are still reading this, this session was IMPACTFUL. (I felt like I went through a therapy session myself, there were tears!). It was led by Beth Jaeger Skigen, LSCW, who oversees many of the RESOLVE Support Groups. I can’t wait to dive into my notes on this, but for your immediate satisfaction, HOP ON OVER TO ELISHA’S BLOG NOW TO READ A FULL REPORT ON THIS SESSION.
We also know many of you asked how to start and lead your own local infertility support group, so HOP ON OVER TO LISA’S BLOG NOW TO READ TONS OF TRICKS AND TIPS.
Then, with so much swirling in our minds, we took some time to step back and regroup, with a little bowling of course! Truly, the friendships formed were pretty awesome. We were able to casually chat about what we were learning, before heading into our final night meeting – WHAT TO DO NOW?
And friends, we have SO much good stuff planned in the weeks, months, and year ahead. We HEARD YOU! This whole infertility thing, it’s hard. Without the right resources, couples are spinning their wheels for far too long. Without financial reason-ability, some people have to walk away from their dreams of starting a family forever. With the stigma of infertility being so silenced, way too many women are suffering alone, without the help of a community or encouragement around them. All of this, it has to end. And we are doing our best to make a difference, one step at a time, so stay tuned.
Now before I close, I wanted to share with you my TOP 3 Takeaways from the weekend. Random things that stuck out that I just can’t wait to share with you. So here they are:
1) The Stanford doctors told us this – “Your voice (the patients!) will be stronger and more effective to continuing advocacy for fertility topics than doctors. So don’t be afraid to make your voice heard!”
2) 76% of women suffering from infertility have clinical anxiety and 53% have depression, although many will go undiagnosed. Depression and anxiety levels peak between years 2-3 of trying to conceive. Don’t wait too long to get help processing your emotions! Infertility is constantly entering into a world of grieving and unmet expectations. Remember that your doctor is not your therapist, that’s not what they are trained for, so take time to find a good one counselor. (RESOLVE offers so many resources for local support groups, both peer and professionally led!)
3) Patients CAN ask for a discount if paying out of pocket, especially if they have gone through multiple cycles. (Clinics may be able to give up to a 20% discount depending on size and status.) Tell your story to your patient billing rep AND your doctor. And if you refer friends, mention that!! Explain your financial hardships … it’s very possible to get numbers cut!
Now, I could go on and on about what an awesome weekend this was (it was!) and how bucket filling it was (it was!) but now, since I’ve rambled enough, I’ll close with some more pictures from our trip.
Until next time friends!