advocate

Learning to Advocate for Yourself During Your Infertility Journey

My initial gyno experience was a complete nightmare. As we stumbled through back-to-back Clomid cycles without any sort of monitoring, my doctors were always quick to pass the baton as to whose responsibility it was to monitor me as I shoveled the Devil’s pills down my throat, eager to do anything to make a baby.

There was never an explanation about temperature monitoring, never a mention about progesterone, timing, testing….simply “take these pills on these days” and off I went.

Shockingly, all three cycles were a bust.

When I went in for my follow-up consultation with one of the doctors to find out what went awry and what we could do moving forward, she shrilled, “You didn’t follow the instructions (there were none) Don’t you want to get pregnant as quickly as possible?!”

With that, I learned a valuable lesson.

You MUST find your voice and be your own advocate if you want to be taken seriously.

It also doesn’t hurt to have SOME sort of working knowledge about the medical shit-show you’re heading into so you’re not completely blind-sided by professionals that are supposed to be giving you guidance about your body.

I switched gyno’s and started doing A LOT of research. Turns out, there were a few more steps that were supposed to occur with these relatively simple Clomid cycles. Regardless, I was already sitting in an RE’s chair as they walked us through IUI and genetic testing.

Side note - if I ever take another Clomid pill it will be FAR too soon. Those things truly are made in Hell.

Then, as our first IUI was cancelled before take-off, our genetic results coming back as matching carriers for MCAD, and we were fast-tracked to IVF, I realized this wasn’t going to be a passive effort at baby-making.

This was becoming serious business with a seriously high price tag. If we were planning to shell out tens of thousands of dollars, I felt obligated to prepare as much as I could. To me, this meant I needed to toughen up a bit and find my voice.

If you find yourself struggling to make sense of your diagnosis, your treatment, your mental health, insurance, bills, ANYTHING….here are a few guidelines that helped me through those sticky situations.

  1. Ask Questions - at the initial IVF consultation, when we learned about shots, when I showed up for monitoring appointments, when I was incoherent after egg retrievals, and any time a concern popped into my head - you better believe I was rattling off as many questions as I felt necessary. You don’t know what you don’t know until you ask. What works for one person and one doctor and one protocol may not work for you so you better find out all you can.

  2. Put it in Writing - If you’re anything like me, you can’t remember what you ate for breakfast, so I always find it best to e-mail the responsible party and copy MYSELF on the email, then file it away for a rainy day. Literally writing out your questions to bring with you to any meeting with your doctor is crucial as well. This will help keep tabs on #3.

  3. Demand Responses - You are the paying patient. The person shelling out thousands upon thousands of dollars to be poked and prodded and shuffled around like cattle. The very least the Receptionist, Nurses, Techs and your RE can do is respond in a courteous and timely manner. If not? Be sure to call again. Re-forward the email. Show up at their house (j/k…sorta) Whatever makes them fully aware YOU. MEAN. BUSINESS.

  4. Go to the Top of the Food Chain - Have no idea what your insurance coverage is? Need help deciphering the codes on that $5,000 bill? Confused about your balance due? Can’t remember your protocol, shot schedule or follicle count? Besides the obvious of KEEP ALL THE THINGS (filed neatly in a cabinet or on your computer) I go straight to the top of the department. Not sure who that is? It’s likely one of the first people you were put in contact with when establishing your account as a new patient. Clinics tend to have the higher managers reach out first, then afterward you are left with their assistants. This goes back to #3, but if you aren’t getting the right responses from the assistants….go to the top of the food chain and get annoying. Trust me, they’ll listen.

  5. Practice - Not sure you’re ready to ask embarrassing questions about your body to your doctor in his or her presence? Worried your face will flush, your voice will crack or you’ll forget what you planned to say? Look yourself in the mirror and practice saying each questions OUT. LOUD. Then, when you’ve mastered the mirror, practice on your spouse or partner until it becomes second nature. Rinse and repeat with any sticking point along the way.

  6. Find Your Tribe - If there is one major missing component at the clinic, it’s any sort of community with the women and men, nervously avoiding eye-contact as the minutes tick down until their date with Wanda. But online? We feel safe behind our screens. There is an entire community of like-minded individuals walking similar infertility journeys as you. Don’t know where to start? Feel free to check out our Instagram page for sources and inspiration (@infertileAFcommunity) We have found complete strangers empower others with advice, resources and even medication!

So there you have it. Tangible tips for the person on a mission to make a baby with science.

This is the just the tip of the iceberg when it comes to using your voice for good during your infertility journey. As always, we are always a quick message away if you need more guidance and support!

XO, Tia


Remember, babe, your seat is waiting at our first Immersion Experience next month.

Claim your seat HERE and we’ll see you in Arizona!


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Our 2020 InfertileAF Summit is launching early bird ticket sales in September!

These $99 tickets are limited in quantity and will only be available to our mailing list subscribers.

Advocating for Myself While TTC (and beyond).

Because while they are medical experts, they are NOT experts of your body.

Because while they are medical experts, they are NOT experts of your body.

It’s interesting to write this today, as I had one hell of a day advocating for myself in my OB’s office yesterday. If you missed my IG story rant, here’s what you need to know:

  • I’ve been with the same OB for over a decade (and genuinely love him).

  • I left him while pregnant because he had just changed partnerships and had lots of new partners I wasn’t comfortable with delivering the twins, should he be unavailable.

  • My endometriosis was found by the OB I saw for my pregnancy, not my regular OB, but I had my file sent over to him so he should have my medical records.

So, the short version is:

I believe pain I’ve felt over the last decade was treated as a symptom for a back injury I sustained in my twenties, but it is actually associated with the endometriosis I have that was diagnosed on 11/1/17. Because of this, and the fact that the pain is regularly increasing, I fear the endo has reached a stage where a laparoscopy is necessary.

The best way I can describe the pain level is:

It’s so bad my mouth waters like I’m going to vomit, and then I feel like I’m going to pass out. Last month I laid on the couch for eight hours without help while the twins entertained themselves. I couldn’t lift them, couldn’t medicate the pain away, and couldn’t find a comfortable position.

Nothing helped.

And though it’s not as long lasting as recovering from a c-section, the pain is more intense and debilitating than anything I felt while giving birth or recovering.

But my OB does not believe it to be a clear enough symptom to diagnose it as endometriosis and gave me three months of birth control yesterday, indicating he thinks I’m merely feeling ovulation pain.

Before I move on, I’m not a doctor, I’m not an expert, and I’m fairly new to endo. I could be wrong, but I don’t think I am. I am the one who is living, breathing, and enduring the pain, not him. Maybe, and only maybe, if he could feel what I’m feeling, he’d know exactly what is going on.

Of course, that’s not an option.

And I’m stuck in this weird place of feeling frustration because I’m not getting the help that I need.

He offered birth control, he offered Lupron, and he offered a new drug on the market.

All drugs. No actual solutions.

Infertility taught me how to advocate for myself and what I think I need. It also taught me that I damn well know my body better than anyone else, and so if I think there’s a problem, I shouldn’t just let a doctor tell me what it is or isn’t, especially when it doesn’t make sense to me.

If you feel you aren’t being understood by your doctor, be persistent. In fact, I think it’s perfectly fine to expect to be seen as often as you’d like to be seen until they actual hear you. I’ve seen my OB this year three times, and at this appointment he made it clear that I didn’t need to be seen after I “tried” my birth control, but could just call him and we could talk on the phone, and while that might be more convenient for him, the squeaky wheel gets the oil, my friends.

And I’m going to squeak my ass off until I get some answers.

So will I call him with the results? No.

I’m making an appointment.

Because I’m serious about this.

In the meantime, I’m also advocating for myself by getting a second opinion and seeing a naturopath to work on my hormones in a more wholistic way. You know, without synthetic hormones.

Sometimes advocating for yourself is openly communicating your disappointment or disagreement with a doctor. Sometimes it’s seeking help from someone else when you don’t think you’re being served well. Other times, it’s looking for different paths to the same outcome.

Ultimately, I cannot function with the pain I’m experiencing and I don’t care who tells me what they think it might be, if you cannot give me a better solution than a pharmaceutical, you’re no longer my people.

So he’ll see my vagina for my annual pap but I think I’ve decided to seek help elsewhere for everything else lady-bits related.

Because we all deserve to be heard, seen, believed, and helped.

This might have frustrated me beyond belief but it has also really opened my eyes.

Just because someone speaks to you like they have your best interest in mind doesn’t mean they actually do, especially when they refuse to believe you.

Don’t let someone’s disapproval or dismissal of your feelings invalidate you.


Remember, babe, your seat is waiting at our first Immersion Experience next month.

Claim your seat HERE and we’ll see you in Arizona!





IFAF_ConfGraphic_2020.png

Our 2020 InfertileAF Summit is launching early bird ticket sales in September!

These $99 tickets are limited in quantity and will only be available to our mailing list subscribers.