#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

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

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

 

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”