#StartAsking

WHO THIS POST IS FOR:

EVERYONE YOU KNOW.

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April 24th- 30th is National Infertility Awareness Week, but let’s get ahead and #startasking now! That’s right, there is a whole month dedicated to educating the masses and holy moly, the masses need it. According to the CDC 12% of women between the ages of 14-44 are  struggle with infertility, thats an insane amount of people. For something that is so far reaching, we need to engage in more dialogue so that we can create a supportive community that fosters positivity so that this horrific process can be a touch better.

I have met countless couples who tell me that they suffered alone for so long. Their friends, their family, colleagues had NO IDEA what they were going through. I can’t imagine living my life without people knowing because infertility consumes your entire being. I am not 100% myself most of the time and for me I need folks to know what is going on so that my behavior or physical state is understood.

But  I digress, so many people keep it a secret because infertility is not discussed in the public space and thus it makes is shameful. Women are often made to feel it is their fault, providing little space to feel comfortable sharing their circumstance. For men, our culture of masculinity confines them to a box that says, “Man+ sperm + “spreading your seed”= MANLY.” Heck, one time I was chatting with someone who I know quite well and is pregnant, and she said, “He feels like a man,” when I asked her how her husband felt about the news of her pregnancy.  

WHAT CAN YOU DO?

Advocate for Legislation

Help ensure legislation passes that protects infertile couples and ensures states require insurance cover treatment. Check out the current pieces of legislation out there and learn what representatives are sponsoring what bills HERE.

Empathize

I write about this a lot but I can not emphasize it enough. If you learn a friend is going through treatment do NOT say, “Oh I know someone who went through IVF, they are pregnant now, it will all work out.” While its great you want to show support and try to provide hope, your friends experience is just that, their experience. We don’t want to hear about it, we just want someone to listen and recognize our own struggle.

Join a support group

Resolve has a great list of groups access the country, find one and join. Having a community that truly understands your feelings and thoughts is invaluable.

#StartAsking

Resolve is hosting a campaign this week to get folks engaging in dialogue around infertility awareness. With infertility comes a slew of questions from “How is this fair?” to “Does my insurance cover this?” to “Where do I start with adoption?” When we ask these questions alone, they begin to eat away at you. When we ask these as a collective, we receive a robust compilation of answers to sift through. While the answers may not always be what we want to hear and they don’t always change your situation, knowledge is power and having an ounce of power during a time when you are utterly powerless is sacred.

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-Annie

TOP 10 THINGS NOT TO SAY TO SOMEONE GOING THROUGH IVF (PART 2)

WHO THIS POST IS FOR:

  • My IVF comrade
  • The general public who means well but says all the wrong things

We IVF sisters unfortunately encounter common comments over and over. After a while your ability to see the good in people starts to dwindle because you hear the same asinine comments on repeat. I can say with certainty that if you know someone going through IVF you need to follow a couple steps:

  1. Listen.
  2. Think “Will this response make ______ know I listened?” If the answer is no. DO NOT SAY IT.
  3. Only speak if you have something that is empathetic.

AVOID (in no particular order):

10.“I am friends with another couple who is going through IVF for XXX years and they were so happy for us when we got pregnant. You should be too.”

9. “If you try to adopt, I bet you’ll get pregnant.”

8.“When you start puking when your pregnant, you think why did I do this?”

7. “When your kids are running around your house, you think why did I do this?”

6. “Sleep as much as you can now because you wont be able to when you don’t have a kid.”

5. “I wish I could travel now, but thats over since we have kids.”

4. “It will happen when its supposed to happen.”

3. The obligatory “Just relax. It will happen.”

2. The obligatory “Just stay positive.”

1. Talking about your period or your pregnancy in terms of hormones like we have NO IDEA what hormones do or feel like.

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I LOVE the friends and family guide from Resolve, I recommend emailing it to all of your friends and family as a guide to help them talk to you. It will help depersonalize it and let them know that there are some universal feelings that go into infertility.

-ANNIE

ERA: The Test You Never Knew About

WHO THIS POST IS FOR:

  • IVF couples who have defied every statistic thrown their way despite her body doing everything its “supposed” to do.

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Last week was a tough week to say the least. We learned Wednesday (after waiting two extra days in our 2WW— a whole other drag) that we are once again not pregnant. While I am no longer shocked by this news, this one stung a little harder because they used 2 perfect embryos (my $13,000 investment in PGD tells us this) and my lining was the thickest its ever been (around a 9.5). But despite the perfect conditions, once again the transfer failed.

LETS TALK STATS

As a 29 year old woman with no explanation for my infertility, I should have been pregnant well…. 2 years ago. But if we are going by science/stats, we are talking two transfers ago. I have now entered the zone where I am in the extreme minority of IVF parents. We know I have awesome embryos (7 out of 18 are genetically perfect) and my lining is being very cooperative. We can presume from the PGD test that its not an egg or sperm issue (although we can not say this definitively). I have had a  hysteroscopy to make sure my uterus was squeaky clean and HSNs periodically to make sure it remained polyp/scar tissue free. The only place left to examine is when my uterus is most likely to receive an embryo and now we are doing just that.

ERA TEST

I learned of the ERA (Endometrial Receptivity Array Test) test prior to our transfer when we talked potential outcomes with our doctor. He explained that 99.99999999% of women only need progesterone for 6 days before a transfer. For example if you have a transfer on a Thursday, you start your progesterone on Saturday night. The 6 day period gets your uterus to accept an embryo at the peak time for a transfer. However .0000001% (I made that up but its something like that) of women may need one or two or three days more of progesterone to give the embryo the perfect opportunity to find a new home. Thus, the next step for us is to examine if my uterus needs some extra time to bake.

WHY THE ERA TEST MAKES MY BLOOD BOIL

I know I post about this ALL of the time but I REALLY HATE BEING ON TRANSFER MEDS. I feel and look like shit. I am usually physically ill and always mentally exhausted. I wallow in a place of low self confidence when I am on meds and yearn to be off of them entirely or to be on them and pregnant (in which case I will suck it up and love each side effect).  I am a positive person and can put a rose-y  lens on most things but when I am on my meds I struggle to find the sunshine in the clouds. I have now spent over 150 days on these meds and the end is no where in sight.

In order to do the ERA test you have to do a mock transfer. Yup thats right, I have to go through an entire cycle of meds but do not get the opportunity to transfer. What this means is, once I get my period (it has arrived) I will start back on estrogen, I will go to the doctors twice a week, start on progesterone and go to the hospital for my “procedure.” However instead of having a transfer, they will scrape my uterus, grab a sample and send it to the lab to be biopsied. HURRAY! I will then have a 2WW for my test results (HURRRRRAYYYYY- can you feel the sarcasm oozing out of my pores) and then start back up on my meds for a transfer.

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IS IT THE RIGHT TEST?

Of course only time will tell but from all of the literature Ive read, I am the prime candidate. My doctor did this test with a patient recently and she is pregnant. At this point in the game, that gives me little hope because each time I go through something new, I am told a story by someone that fits this framework.

“OH so many people have a successful transfer by the 2nd time.”

“Statistically most women are pregnant by the 3rd transfer, thats why insurance covers 4 retrievals.”

“This one patient couldn’t get pregnant but once she got her embryos tested she was successful her first time.”

The list goes on.

In a month or so we will once again be waiting patiently to find out test results. The highs will be high and the lows will be incredibly low. We are still on the worst rollercoaster that never seems to end.

**** I called my insurance to ask if its covered because I was told by doctor it wasn’t. (side note: Thankfully this is not near the cost of PGD). It is such a new and rare test that they had never heard of it (neither did the genetic counseling center that manages my referrals). I asked the doctor to submit it with a letter making the case as to why I need it. We shall see if they agree. If you are on the road to the ERA its worth calling your insurance directly to ask because your doctor may presume they won’t cover it which may not be the case.

-Annie

IVF approved Workout Part 2

WHO THIS IS FOR:

  • Women who are in IVF and are told to do low impact exercises while on a cycle
  • Women who overstimulate but want to workout leading up to a retrieval

WARNIG: I am not a doctor.  The advice I am providing is from my own experience. You must listen to your body and do what is right for your treatment.  Of course consult your doctor before participating in any of the exercises, if they give you the go-ahead, indulge and enjoy!

I wrote about working out a while back, check it out HERE. What makes me qualified to chat about workouts? I am a 200 RYT yoga instructor but more importantly, I am a work out nut. Prior to IVF I went hard, really hard with HIIT workouts. That unfortunately has changed over the past 1.5 years because of IVF and a big ol’ broken big toe. Speaking of which, I learned yesterday that I may never run again… add that to the file of shit I have been handed as of late. But I digress… the workouts below have a big impact with a few small movements.

This post is focused  on TRX workouts. If you haven’t taken a TRX class, I recommend finding one in your city. Definitely let your instructor know if you can’t do high impact exercise because of doctors orders.  Some classes use jumping (usually with squats) but you could easily modify with regular squats.

If you cant make a class, here are some great circuits to try. I recommend using the app Seconds so that you can have consistent circuits.

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TRX-Workout

See them in action here: https://www.trxtraining.com/train/exercises

I found a great article on keeping form in the case you can’t get to the class. 

-Annie

Is a failed retrieval the end?

WHO THIS POST IS FOR:

  • Couples who are about to start IVF
  • Couples who have had a failed retrieval

A quick recap, a retrieval is when the doctor removes eggs from your ovaries. You may have this done to retrieve eggs for a later use or use those eggs to create embryos. You can learns the ins and outs of the procedure HERE. This post though is not about the basics and the minutia of a procedure, rather its about what happens if things go wrong. Sadly I can tell you about this experience. I am not a doctor, do not take this as medical advice. Rather, this is post to let you know there is hope and you have some control in this situation.

FEBRUARY 2015

I was scheduled for my first retrieval. I was prepped and ready. I was told things were “perfect” days leading up to it. I went in for surgery with 48 or so follicles. I woke up from surgery and my doctor was sitting in my room. She said she had bad news. I looked at my husband and he confirmed (he was told while I was out). She wasn’t able to retrieve a single egg.

I was in shock, how could this be? It didn’t make ANY sense. She said she hadn’t seen this happen before and told me she was so sorry.

Suffice it to say I was devastated. This was a complete whirlwind going from exploring infertility to IVF to a failed transfer all within 4 months.

We scheduled a meeting with her shortly after to discuss options. She let us know she consulted other doctors because she hadn’t had this happen in the past. She didn’t have a  definitive plan, she did have some ideas though. Her uncertainty made me uneasy, I left and made an appointment for a second opinion.

CHECKING YOUR HORMONES THE DAY BEFORE THE PROCEDURE

We met our new doctor and immediately were compelled to switch. While he was surprised at the outcome, it didn’t stump him. He had a slew of potential reasons and explained in great detail what most likely happened.

He then asked one key question, “Did they check your hormones the day after your trigger shot (day before surgery)?” I let him know that was the ONE day I didn’t go in. He looked perplexed and then explained that this was not standard practice. It IS standard practice to check your hormone level the day before to ensure the trigger worked. If your hormones indicate it didn’t work, no big deal, they will give you another and let you bake a few more days.

I have had 3 incredibly successful retrievals since switching doctors. My doctor has retrieved 72 eggs.

TIME IS OF THE ESSENCE

The switch in doctors taught me how incredibly important timing is for a retrieval. As you prepare for a retrieval it is SO important you understand the timeline so that you can advocate for yourself. It is your body and you should have the ability to make the call as to wether you need your blood taken, etc.

There are many retrievals that fail for other reasons (egg quality and quantity) which are difficult/near impossible to prevent or predict. Timing can be managed. I hope this is helpful as you prepare to talk with your doctor.

-Annie

Spring Trends for that IVF Bodacious Body (Dress Edition)

WHO THIS POST IS FOR:

  • Women drugged out of their brains and bloated

My newest cocktail of meds is wreaking havoc on my body in a whole new way, YIPPEE! I was switched from Endometrin to Crinone. I have felt like a slug in the past but Crinone comes with a whole new slew of delightful side effects. Headaches, intensive cramping, increased urination, and of course bloating.. these are just the tip of the iceberg. Nothing makes ya feel better about life than your stomach looking 5 months pregnant when you are not.

With spring around the corner and my anxiety in full force, clothes that make me forget I am bloated have been on my mind. Plus, looking at spring clothes is just simply exciting.

I bring to you a few options that will hide whatever is happening to your body and make ya feel fly. The majority of these items were tried on while in full bloat, thus they are bloat approved.

(Click on images to shop the look)

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Mayan Uterine/Abdominal Massage

WHO THIS POST IS FOR:
  • Women starting infertility treatments
  • Women who are going to transfer an embryo
  • Women who are doing IUIs
  • Women who are struggling to get pregnant and are trying natural remedies

When I first realized something was wrong, I texted my mom my concern. Her name is “ma” in my phone. Instead of it going to her, the text on accident went to my friend Mary (who is Mexican). The text sparked a conversation and she mentioned Mayan massage. She told me her family members swear by it and have gone to small villages in Mexico whenever there was a fertility issue. Fast forward  to my IVF group and my leader mentions that she went to get a Mayan massage before her successful transfer. It sparked a curiosity in me and I made some moves and got one! Below is the who, what, where, and why of Mayan Abdominal Massage.

WHAT/WHY

Mayan abdominal/uterine massage is an ancient technique that helps move the uterus back into place and increase blood flow. Most women’s uterus is tilted one way or another from all sorts of reasons. The way you stand, how you sleep, injuries… you name it. There is no direct link to a tilted uterus to infertility. The way I see it though, there is no harm in getting things back in line. More than just aligning organs, the massage is supposed to help get blood moving.

In Mayan culture, the uterus is the center of the body and where emotions are kept. This is similar to the eastern cultures and a lot of the Mayan philosophies align to the ancient Chinese thoughts (same stuff talked about in acupuncture).

In addition to the massage the therapist also provided me a number of options to try afterwards. This included: a vaginal steam (yep!), castor oil pack, daily massage routine, and uterine meditation cd. The vaginal steam (which apparently Gwyneth Paltrow is into but with crazy technology) is meant to help clear out any old “junk.” You do this before the transfer. I didn’t have time to do it but it didn’t sound too tough. The castor oil also has to be done before a transfer. Once again, didn’t have time due to travel.

I did however maintain the daily routine. She taught a step-by-step massage. It was super interesting because I now know where my uterus is and how to identify it when pressing my abdomen. After the transfer the routine changes because you don’t want to move the uterus. You do continue a light routine to help blood flow after transfer.

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WHO

There are practitioners who are trained under other folks who have been trained in this form of massage. The massage therapist I worked with lived in South America for a while to learn the technique.

I was incredibly happy with my massage therapist because she offered me the option of an additional half hour to learn the techniques. She sat with me and explained the reasoning and purpose behind each move. She even gave me a massage ball for my neck and glutes!

WHERE

I researched Mayan Uterine Massage and read reviews of different practitioners. Most of the reviews I read mostly talked about the effects the massage had on their bowel movements (another reason people get this massage) but overall it sounded like she was a great listener and was considerate. She was indeed both of those things.

She also gave me follow up documents that included additional things to try. I took each thing with a grain of salt and kept the mindset of, “If it doesn’t hurt, why not try it.”

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THE VERDICT

I have no idea if it worked (I guess we can speculate when we the 2WW is over). I do know my lining was great but I could not say definitively it was because of the massage since I was already on my estrogen in preparation for a transfer.  The only “cost” was financial and thus I say go for it. Worse case, you get a great massage and time to chill out.

-Annie

It’s not your fault.

WHO THIS POST IS FOR:

  • Women going through IVF
  • Supportive friends of folks going through infertility treatments

 

In February 2014 I was a proactive planner, I went to my gyno and let her know we wanted to make a baby. We decided that I would go off the pill in May. I recall the visit so clearly. She said, “I love that you are responsible and are planning. I wish more people did that.” HA!

In June 2014 I didn’t get my period. In July 2014, I didn’t get my period. I went back to my gyno because this was unusual. Before birth control I ALWAYS got my period. I hopped on my bike, road to the office and entered her room. I sat down and let her know what was going on. She pointed towards my helmet and said, “Is this a new thing?” “What riding a bike? No. I have done spin 3 or more times a week for the past two years,” I replied. She scratched her head and explained I might just be exercising too much. In my gut I knew this wasn’t right. My workout routine hadn’t drastically changed in the months leading up to the summer. I knew that me riding a bike a mile wasn’t what was keeping my period. But it was hard not to doubt myself.

Fast forward to September 2014, I still didn’t have my period. I was put in touch with a fertility doctor through a family friend. I hopped on a call with the doctor and she asked me a few preliminary questions. First up, how much do you weigh? At the time I weighed 117 and I am 5’6. There was a long pause, “That’s probably it, you don’t weigh enough. You should gain 5 pounds.” Mind you, she hadn’t seen me, she was purely going on numbers. Also, at the start of summer when I didn’t have my period, I did weigh 5 more pounds. I know my body very well and I know that when I don’t have estrogen in me (which feels AWESOME) I loose weight much quicker and am able to maintain my weight. My weight was a result of my situation, it was not the CAUSE. I got off the phone feeling like it was my fault.

Throughout this process again and again I have been made to feel that my infertility is my fault. Just a few snippets of the “wisdom” thrown my way:

  • “You just need to relax.”
  • “Well if you were just doing XYZ.”
  • “If you just thought about it less.”
  • “When you stop thinking about it, it will happen.”
  • “If you just ate meat, you would get your period.”

There is always an underlying tone of blame. While all of these statements are made with a hint of innocence, the result is shame.

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Women are made to feel that they SHOULD have control over their fertility. That if we just tweaked this, or did that, this would all go away. If we put women’s health in historical context we can say definitively that women’s bodies are still quite a mystery. This comes from years of not prioritizing women because women were not in positions of power within the medical field. Centuries of biases and misinformation feed into the reasons why women put pressure on themselves.

Turning the voice off in your head that says, “I am doing everything I can and this is not my fault,” becomes increasingly difficult as the meds start being pumped into your body.

I can’t speak for everyone but I know from my experience with friends going through IVF, we are all beating ourselves up… we don’t need another voice telling us what else we could  or should do. My therapist and husband are voices of reason and I am so grateful to them.

I would like to offer some “counter” mantras/bits of wisdom for all of those who struggle keeping the voices at bay. I hope you take them, savor them, hug them, and USE them:

  • From my therapist: ” I have never met ANYONE who wants something so bad and has worked tirelessly for it that wasn’t anxious. That is part of the territory. It has no effect on your ability to become pregnant.”
  • There are thousands upon thousands of vegetarians who have kids. Meat wasn’t what helped them get there. UPDATE: Approximately 31-40% of India is vegetarian. Last I heard they were doing pretty okay with population. In fact word on the street is, they have a lot of people.
  • Emaciated people all over the world have kids, its not your weight.
  • Does everyone who has kids not have any stress? No, its ridiculous to think everyone who got pregnant was cool as a cucumber.
  • From my therapist: “People can handle adversity, but suspended adversity is a whole other beast. It is normal and expected to be angry and anxious.”
  • I am healthy.

It is not our fault. We were dealt a really shitty hand. We did not do anything to cause this.

-Annie

 

IUI 411

WHO THIS POST IS FOR:
  • Couples who starting fertility treatments

Its been a hot minute since I had an IUI. I have met a lot of women recently who are just starting the fertility process and thus I thought it might be helpful to talk about what an IUI is and what to expect during your procedure.

THANK YOUR LUCKY STARS

IUIs are a piece of cake. I say this now but I know at the time I was a nervous wreck. Although in hindsight, I had a hell of a lot more hope. I thought I would go in, wham-bam and be done with all this. IUIs seem like a breeze now because it was the beginning of it all. I know starting infertility is scary but I promise you, be thankful that you are only doing IUIs. If you get pregnant off of one, you are super lucky.

Now that that’s out of the way, what is an IUI?

IUI: Intrauterine insemination

Before heading down the IVF road, your doctor will make you undergo an IUI (or several). Insurance actually requires this. IUI is non-invasive.  During an IUI the sperm has to find the egg, think its sexy- become an embryo,  and implant. In IVF the job of the sperm finding the egg happens in a petri dish (not your body) and is carefully monitored as the embryo grows, the embryo is then put back in your body to implant. With an IUI everything happens inside of YOU. Its less lab like, only one person stares into your vagina. Like I said, in comparison its a cake walk. HOWEVER its still unfair and not comparable to creating babies the “natural” way.

If you have a limited supply of sperm or don’t react to meds, you will be fast tracked to IVF because the probability of you becoming pregnant off an IUI is 20- 25% (the same as two people just trying at home in their comfy bed (age related of course)— I imagine this is how children are made) and time and resources are precious.

Also, according to AmericanPregancy.org, you will not have an IUI if you fall into one of these categories:

  • Women who have severe disease of the fallopian tubes
  • Women with a history of pelvic infections
  • Women with moderate to severe endometriosis
CHLOMID

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To prepare you for your IUI you will be put on the infamous Chlomid or something like it. I have met only one woman in my life who wasn’t affected by Chlomid. Most people complain that it makes your mood insane. I personally didnt have mood issues, I had issues with my brain completely malfunctioning. During this period of my life I: yelled at strangers thinking they were friends, walked into walls, showed up to appointments that didn’t exist, triple booked meetings, etc. On Chlomid my brain was like a mush of cotton candy who flew to Phoenix for winter, it was checked out.

Once you know how you will react you can plan accordingly. Maybe you hold off from being super social for the weeks leading up to it.

DOC APPOINTMENTS

You will have a lot of doctors appointment to check your follicles and lining. Right when they think you are going to ovulate, you will have your procedure. This means you will need to be ready to drop your schedule and make it work. Its a lot of pressure because the sperm has to be perfect which means you will have to have sex on specific days leading up to the procedure. Personally for us it was weird because it completely stripped the romance out of creating a child (once again that notion is now long gone).

DAY OF PROCEDURE

When you arrive you will either have your partner provide a specimen or you will give them some from earlier that morning, or the freezer. They will clean the specimen in a machine for about 40 minutes. Essentially they are removing any extra “junk” so that its the purest sperm going towards your eggs. My recommendation, go get brunch so you aren’t sitting there twiddling your fingers.

Once the sperm is “clean”  you will go into the room for your procedure. There are a lot of jokes about being turkey basted BUT that is essentially what they do. Your nurse will place a catheter into your uterus so that the sperm can meet the eggs. This is not comfortable, shocker!

Recommendation: Have your partner hold your hand. Its the most intimate you will be able to get during this.

Once the sperm is inside of you, you will lay there with your booty in the air for 15 minutes (dreamy, right?!). You will then get dressed and wait for two weeks. Its nerve wracking but in the grand scheme of things, its not too bad 🙂

I will be honest, I can’t remember what the aftercare was like. I do know that I ran a 5K while I was waiting so I don’t think it was a lot.

 

-Annie