#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

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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

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

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

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

 

Accupuncture

WHO THIS POST IS FOR:

  • Women going through IVF

I am well versed in acupuncture for two reasons. First, I have regularly gone to acupuncture for 5 years. Secondly, at each appointment I ask a million questions. At this point I know my acupuncturist quite well, thus she knows I need to understand why were doing what we are doing in order to proceed. That being said, I am not a medical professional. Consult your doctor before pursuing acupuncture.

ACUPUNCTURE AND ME

I started going to acupuncture for pelvic floor issues that began when I was 16. I had endometriosis surgery to see if that was the root cause and after years of speculation we learned that I did not have endometriosis. By this point I had every test imaginable done and had been to physical therapy. My gyno threw her hands in the air and declared, “I don’t know what else to do, try acupuncture.” She handed me a card and off I went.

I did intensive treatments for months on end and slowly my pain started to go away. At this point in my life I only have pain right before getting my period and know through my IVF journey that my pain is linked to a fluctuation in hormones. 

When I went off the pill, I immediately let my acupuncturist know that it was baby making time. She started me on a cocktail of herbs and worked to get my body moving. Unfortunately I never got my period. I worked with her for about 4 months before going to a fertility doctor.

Throughout my first year of IVF I went before and after each treatment. At this point I think acupuncture helps to relieve stress with IVF but for me personally I cant say definitively that it helps with my lining or egg production. I don’t have anything to compare to make a conclusion. I do know that during my past two retrievals I did fewer treatments and my results were actually better. This all though is a crap shoot and I can’t really determine where the results come from.

ACCUPUNCTURE AND IVF

Many people pursue acupuncture during IVF for the following:

  • Thicken lining
  • Egg quality/ egg numbers
  • Reduce stress

I cant guarantee the first two will work but acupuncture is great for stress relief. For an hour, you chill out, relax, and may fall asleep. When you are gearing up for a procedure and your mind is racing, this time away from reality is lovely.

Many friends came to the idea of it after their doctor recommends it as a stress reliever. From the research I’ve done and from talking to doctors/acupuncturists, there is no conclusive study that says “YES THIS WORKS!” What we do know is that it doesn’t hurt to try.

WHAT IS ACUPUNCTURE?

Acupuncture is a eastern medical practice that uses very thin needles to move energy (qi) throughout your body. The acupuncturist is trained to understand the different points within your body that align to different pathways. They evaluate where you need movement based on the  body types in ancient Chinese medicine. Based on your diagnosis your acupuncturist will select locations to place needles. The needles do not go far into the skin and should not hit a vein or muscle.

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WHAT TO EXPECT

I know acupuncture sounds scary and super hippy dippy. It is not scary but yes it can be hippy dippy at times. Its important to distill what you want from it. Sometimes I am like “yes! This makes logical sense,” and other times I just have to just nod my head and smile.

People are most scared of the needles, here is what you need to know:

  • They are SUPER thin.
  • You don’t feel them.
  • You may feel a weird sensation here and there, acupuncturists chalk that up to the qi moving. 

When you arrive you will go through a series of questions. Your specialist may ask to see your tongue (go with it). They will then asked you to get undressed or remove clothing. You will place blankets over you to cover yourself. You will lay on a table and the acupuncturist will place needles in strategic locations. Ask about the locations they are choosing, it is fascinating!

Once the needles are in, you will lay for a specific amount of time. During my treatments a heat lamp is placed over my belly area to help with blood flow.

I fall asleep during my treatments, it is wonderful. After your treatment is over, your acupuncturist will come in and remove the needles. You shouldn’t have bruises.

Depending on doctors orders and your acupuncturist you may be prescribed herbs. It is super important you ask your doctor first because you don’t want to mess with your cabinet of meds for treatment.

Some insurance companies cover treatment (although this is rare). You can find acupuncture schools where they will discount the fee although if its your first time doing acupuncture I would stay away. Don’t want to add any extra stress. $60-$90 for an hour session seems to be the going rate if you go to a licensed professional.

EASE YOUR MIND

Acupuncture may or may not help. If you think it will, try it out. You have nothing to loose. The way I look at it, rule it out so you can ease your mind. If you know you may say to yourself, “Well If I just tried…” then try it and see how it goes. No harm, no fowl.

-Annie

Finding a Therapist

WHO THIS POST IS FOR:

  • Couples going through IVF
  • Women going through IVF

I love therapy. I believe everyone needs it because we all have our own shit. The world would be a better place if we were all a little more self reflective and proactive. But I digress!

I have been in therapy for years and along the way have changed therapists depending on what I needed. When I first started IVF I was with a hippy dippy mediative sort of therapist. While this methodology worked for some parts of my life (like family dynamics) it was not serving me well for IVF. After a suggestion from my doctor I switched therapists and it was the best decision I could have made.

I learned there are therapists who specifically focus on IVF. This means they are well versed in the lingo, know how to empathize with you and can help you navigate the process. You don’t spend your hour explaining procedural information, rather you can dive into the emotional wreck you have become.

I know switching can be daunting. It takes forever to build rapport with your therapist and when you have been with someone for a really long time they know the ins and outs of your family. To me IVF is a whole new beast and having someone who really gets it is essential and worth laying the groundwork.

WHY GET A THERAPIST:
  • They can help you sort through your feelings. Having a third party who isn’t on drugs but understands the effects of the drugs on your mental state can be super helpful.
  • IVF is tough on every and any couple. Ive never met a couple who was like “Yes IVF was the sexiest time in our marriage. It was pure joy!” Having someone to help you navigate those dynamics so you can show love to one another will set you up for long term success.
  • Sometimes you need to be put in your place. When I would get crazy about weight or why things weren’t working, my therapist was my voice of reason. She appealed to me with logic and an empathetic tone.
  • ADDED BONUS: If you can find a therapist who has had infertility issues it is even better because she will truly understand your pain. We have many a laughs during my sessions because of this unfortunate commonality.
TIPS FOR LOOKING FOR A THERAPIST:
  • Search for terms like IVF, medical speciality, medical trauma.
  • Ask your doctor for a recommendation.
  • Call your insurance company to see if they have someone in network that specializes in medical trauma or IVF.
  • Call several different therapists for a phone consult to learn about their philosophy. You are the patient and the one with the $$$, you can ask them how they work with their patients, what drives their work, etc.
  • If you dont like the therapist after the first appointment, switch! You need to be comfortable with being you in front of them.
CASH IS TIGHT! I CANT AFFORD THERAPY!
INSURANCE

In Illinois you get the best coverage for IVF with an HMO. HMOs suck for just about everything else including therapy. Through the IVF process I actually learned that 50% of my therapy costs could be reimbursed for out of network therapy. Shockingly this is not advertised. I recommend calling your insurance provider to find out all options before giving up on therapy.

HEALTH CLINIC

In Chicago there is an amazing organization here called the Chicago Women’s Health Center. When I was going through a crisis years ago and was strapped for cash they let me come in for therapy for only $15 a session! They have a sliding scale based on income. If you are fronting your IVF costs I would imagine most amazing non profits for women would consider your costs. Google women’s health clinics in your area and call to see what recommendations they may have.

-Annie

IVF Clinic - "All I want is a womb somewhere"
IVF Clinic – “All I want is a womb somewhere”