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!





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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.

Losing Myself While TTC - Lindsay's Perspective

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When I was seven I wanted to be a butterfly.

At ten I thought I'd run for President.

When I was twenty-one I worked toward becoming a teacher.

Now I'm 36 and none of those things.

The one thing that has been a constant for as long as I've thought about my future? Wanting to be a mom, to have the two kids and the partner, to feel secure that the reason I do anything has more purpose than myself.

Yep, read that again.

Somewhere in my journey I stopped dreaming about what I could be for myself and started dreaming about what I'd be for everyone else.

We treat people who don't have kids like they're selfish or like their dreams and goals aren't as important because they aren't attached to little people, their genetic code not being passed along somehow invalidates everything they do. Sure, society doesn't directly state this to anyone. But we all know it's true: somewhere along the line, when you were trying to conceive, your worthiness as a human came into question in your mind.

You wondered if you'd ever truly get the title of becoming a mom.

You remembered back to that one time someone invalidated your family of two by saying you weren't actually a family yet. 

You questioned who you'd be or how you'd cope if what if became a reality and you had to walk away from treatment and take a different route, no matter what route that might be.

We get so wound up in fear of it all that we're willing to sacrifice a lot of good in our lives because babies are "worth the wait."

Right?

When we found out we needed IVF I immediately started researching the trauma pieces of the journey. The truth is, the outcome felt so out of my control at that point. Sure, I could do my best and fight for what I wanted, but I also had to stop telling myself that a biological kid might be in the cards. We were at one of the final stages of treatment, when everything else had failed, and if I convinced myself it was definitely going to work I knew I'd start acting insane. I'd go one too many rounds or resent my husband if he wanted to stop.

I've been known to go so hard after the things that I want that everything else gets neglected and wrecked, because if I believe in something, I believe in it with all of my being.

Plus, my mind is a bitch sometimes. I take things too hard or too personally when others are hateful, and having a background of abuse makes me question if those thoughts are true OR if I'm crazy for believing them. I hardly ever give myself the benefit of the doubt when I'm struggling, so combine my give-it-everything tendency with my you-suck brain, and you could say I took on infertility like it was all my fault, my issue to fix, and every time I got a negative it confirmed how much I was failing.

Legitimately, on my worst days, when I wanted to lay in bed all day and sulk, because that's the kind of depressed person I am: I will lay in my own filth for days at a time and validate my own negative beliefs of unworthiness:

"How can you raise a kid when you can't even take care of yourself?"
"You're gross inside and out; you don't deserve to be clean."

I hadn't felt the heaviness in my soul for a few years, but I knew that pain, the isolation and longing to be understood and heard and held up, and I knew my own identity was going to take a massive hit if I didn't do something to process and move through those feelings.

We hadn't even started cycling yet.

That's when it hit me, that I knew these feelings because I'd survived them before, and so I thought back to my trauma therapist and what she would ask me about those beliefs and my behaviors.

"How are you taking care of yourself, Lindsay?"

In that moment I made two promises to myself:

Practice some kind of self care every single day, no matter what.

Let go of the idea that being rigid and forceful could change the outcome.

Self care, for me, isn't luxurious most days, because even though I practice it each day it's still work. I always feel better after completing it but always question if I should. On my worst days (in bed), I'd simply force myself to get up and do basic hygiene, like brushing my teeth and showering. On better days, I'd meditate or go on a walk, and on the best days, when I was doing all of the above for myself anyway, I would find a way to help someone else struggling.

Helping other people has always been a way for me to feel good about myself, if I'm honest. Mostly, because my soul knows what it's like to want or need assistance and then to receive it; to feel seen, heard, understood, and validated. To give someone else that moment of hope or grace felt like an easy way to ramp up my feel good endorphins.


And this type of commitment to myself is still necessary now, even after having success.

Because pregnancy after infertility can be very traumatic (and was for me).

And delivering your babies after a healthy pregnancy can also be traumatic (and was for me).


And parenting, no matter how much perspective you have or how happy you are to finally be a parent, still comes with its own unique set of challenges and heartbreak. And it's hard to wrap my brain around that, still. I feel guilty saying I struggle.

Life, with or without kids, is going to throw trauma on your lap. We don't get to control that. What we do have control over is our movement within those painful moments. We get to choose how to show up both in the world and within ourselves, and if you're practicing self care while you struggle you will not feel so drowned by the pain, at least not all of the time. Yes, you'll have hard moments. Yes, you'll still have to consciously make the choice to show up for yourself. But it will get easier and you will feel better.


You deserve to come out of this journey and feel good about how you showed up in it, no matter whether or not you have a baby on your hip. Society's bullshit ideas about who should be celebrated and who shouldn't should NEVER be where you base your worth, because each of us will always find a reason to feel invalidated, whether it's because of our infertility, our sex, our weight, a beauty standard, a political leaning...whatever...we're all inundated with bullshit that tries to make us feel like crap all of the time, and it's time we take back the power over who gets to tell us how we should feel.

Because you should be the one making those decisions.

You deserve that and so much more.

XO

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Feeling stuck with life during or after Infertility? 

We get you, honey. Let's work it out together. 

Consider facing your fears head on surrounded by healing scenery and a tribe of like-minded women in Arizona this September at the Immersion Experience. 

Losing Myself during IVF - Tia's Perspective

I remember the moment I realized just how far down the rabbit-hole I had gone with our attempts to make our baby. I had been feeling off all week, knowing I was likely pregnant, but unwilling to take a pregnancy test yet as my beta was days away. I had been down this path before. When I was pregnant with my son, walking gave me asthma attacks. I had difficulty breathing at times and it always felt like my heart was racing. The same thing was happening now, only at a less hectic pace. My intuition told me this pregnancy wouldn't stick around even if it was positive.

My husband, Mark, was on his way to our rental property to check on the progress of our tenant move-out. We had been anticipating this day for a while as their willingness to pay on time or communicate had come to a stand-still. 

The phone rang. It was Mark. "Tia this place is a complete disaster. Can you get off of work? Bring all the cleaning supplies and garbage bags we have with you. Oh, and gloves. HEAVY gloves. It's not good."

Shit.

What if I AM pregnant? I shouldn't be around heavy chemicals and lifting a lot of stuff, right?

I took a test.

At the end of the three-minute mark, the second line finally popped up but I didn't believe it.

Last time it was blazingly positive as soon as my pee hit the stick. 

Something's wrong.

I started shaking, knowing I needed to help Mark. Knowing I was sort of pregnant.

I looked up at the bathroom mirror and didn't recognize my face. I couldn't really remember the last time I really took note of how I looked. All I saw this time was fear. Sunken eye sockets.

Long, unkempt hair that limped around my temples. Dry, chapped lips.

I tugged at the bottom of my shirt. It was more snug than it used to be.

All the IVF medications injected into my body over the last couple of years didn't really make a dent in my weight, but my miscarriage did, and I never really put any effort to try and get the weight off since I insisted we dive right back into another cycle. 

The cycle I was currently in. The one that took all year to complete because I just couldn't bring myself to accept this journey was over. I wasn't going to be a mom. I wouldn't be getting the biological baby I worked so hard for. The one I poured every second of every day into achieving for the last six years.

I had become this lifeless, exhausted, pale person. 

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Is this who I was going to be if I became a mom? 

Is this how I was planning to show up for my child?

Is this the person my husband saw?

Is this my life now?

Because it sure wasn't who Mark married. And it sure as Hell wasn't the same person that started trying to make a baby in 2012.

What. the fuck. happened?

I'll tell you what happened. I took my Type A personality to the extreme, dove in head first, and went all in on the bigger life goal I wanted. I held myself hostage to keep fighting.

I pushed aside everything single thing that wasn't TTC related because I believed it was just background noise. Not worthy of my time.

I chose not to invest money into my appearance, my clothes, or my self-care routines if it meant there was more money for IVF.

I chose not to connect with friends, family or even Mark because there was so much research to complete in between clinic phone calls.

I was restricted from working out, my main source of relief in an already chaotic world, so became restless and irritated with no tangible outlet.

I stopped planning weekends, trips or parties. The only planning I was doing was for every possible due date. When maternity leave may take place. What I needed to save for baby. Which daycare would I choose? 

Projects on hold.
Hobbies on hold.
Fun on hold.
LIFE. ON. HOLD.

I lost everything that made me ME in the process of baby-making, and that last early miscarriage was my tipping point. I wanted to take the reigns back on my life and the only way to do is was to stop the addicting cycle of TTC. For me, it was all or nothing. So I finally chose to walk away.

Having gone through the wringer in a way that didn't serve me well, here are some alternatives if you find yourself more aligned with how I went through IVF.

It's necessary to come up for air between cycles. If you find yourself needing more than one IUI or IVF cycle, there is NOTHING wrong with taking time between them to actually lean into and process your emotions. In fact, I would encourage it. This in-between is an excellent time to reconnect with your partner, plan a fun outing, reconnect with your friends and family or simply pick-up the hobbies you love.

Your reproductive system isn't going to turn to dust if you don't commit to back-to-back cycles.

I always felt like time was against me. As if my eggs were going to shrivel up if the clinic didn't suck them all out of me as soon as possible. The reality is; there will always be more money if this is what you choose to spend it on. There will always be a reputable clinic available for your next cycle. Your biological clock may be ticking but it's not the frantic downhill slope that outsiders may lead you to believe. 

Set a budget for self care and use it. I completely understand that fertility treatments can trump any and all available money you have. Of that amount, I encourage you to set aside a monthly or quarterly budget for things that make you feel good. Whether it's a new outfit, a hair cut, a massage, a book, ANYTHING that reminds you of the badass woman you are is money well spent, in my opinion. Set it aside and DIP INTO IT.

Write it out. Whether it's in a journal, on a blog or simply a series of calendar invites to yourself with details of the day, documenting your days before, during and after treatment give a sense of clarity to just how long each season has been going on. I try to highlight the fun stuff AND the trying stuff because to me, it's ALL important and worthy; equally.

Be honest with yourself. What IS the goal of this? What IS the bigger picture? Do you want to become a mom to a child or to your biological child? Would an alternative route be more suited for you? What do you miss about life before TTC? How's your mental state? Do you think you just need guidance or do you think you have exhausted your boundaries? This type of honest gut-check is crucial to evaluate your quality of life. I would recommend doing it every few months or at the very least, yearly, based on where you're at in your journey.

Thanks for reading :)

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Feeling stuck with life during or after Infertility? 

We get you, honey. Let's work it out together. 

Consider facing your fears head on surrounded by healing scenery and a tribe of like-minded women in Arizona this September at the Immersion Experience.