PLEASE NOTE: If you are struggling with infertility or are trying to conceive and you DON'T want to readabout my pregnancy (which I totally understand), I recommend starting at thebeginning of the blog (March2010) and reading from there. I find out I'm pregnant in June 2011 so thereis a lot of trying to conceive posts in between that you might find funny,helpful or especially relatable. Wishing you all the luck in theworld!

Tuesday, January 21, 2014

Infertility Confidential: Infertility Info That You Need to Know and May Get Me Killed



Do you ever meet up with a friend for dinner or coffee and they are like, “Oh my god! I have SO much to catch you up on!” That’s exactly how I feel. Although I have no big news, I did want to fill you in on the latest in my life in general. That will have to wait for another time though. l felt so inspired to write the below post that it took priority over the ever continuing and amusing events of my own life.

Next week, my son will be two years old. I know, I know… I can’t believe it either. Since then, as you all may know, I’ve become a hard core infertility advocate both professionally and personally. Because of this, I’ve learned so much that I sincerely wish I knew when I was still peeing on ovulation prediction kits thinking I was going to get pregnant the first month of trying.

*Cue studio audience laughing*

So, here are a few of the bigger lessons that I’ve learned that I wanted to share with all of you. I hope it will empower and inform you but really, more than anything, I hope it helps you be your own kick ass advocate.

Here we go…

On Average, Most Patient Cycle an Average of 3.2 Times – I posted this on Twitter (my account is @the2weekwait. Feel free to stalk me!) and it got retweeted quite a few times. According to the ASRM, most patients going through IVF around 3 times before they have a baby. As daunting as that sounds (especially when you’re at the beginning of your TTC journey), I wish I knew that back then. I wouldn’t have felt like such a failure for not getting pregnant on the very first IVF. And the reality is, at least for me, I did get pregnant on my third IVF so if anything – I was the average (although in many other ways, I’m fabulously exceptional!)

I should note though that if you haven’t gotten pregnant on your third time, that doesn’t mean you never will. I have known plenty of people get pregnant on their fourth or fifth and even in one case, their ninth (I still have no idea how they afforded that many cycles!) Every case is different but again, this is the average.

Success Rates Aren’t Everything – Did you ever see the movie Silkwood where the main character Karen Silkwood (played by the freaking awesome Meryl Streep) gets killed after exposing worker safety violations at her plant? Drama! Oscar nominations! Well, that’s how I feel about bringing to light this particular point so I’m going to speak in general terms before a clinic sends a hit man after me.
Aside from the fact that some clinics refuse to treat certain patients because they feel they will hurt the clinics success rates, if you look carefully at SART, some of the numbers don’t actually add up. If you look at the number of cycles a clinic says they did up top and then manually go through all of the cycles one by one adding up what's reported below, chances are they will not equal the same number.

Plus, let’s just say some clinics get "creative" in what numbers they report (only the embryos transferred and not all that were produced, etc.). I do know efforts are being made to improve this but I wanted to mention it because some live and die by the SART data and I gently wanted to suggest you base your decision on other factors as well (insurance, how far it is from you, when they can see you, online reviews).

Really, nothing can replace your gut. I suggest you meet with a doctor before making a decision.

And before I do get run off the road under mysterious circumstances (good thing I don't drive), let me make clear that if the numbers are off or questionable, that's NOT SART's doing. Again, it's how it was reported to them and both clinics and SART (from what I understand) are sincerely making efforts to improve this in the coming years.

There Are Only a Handful of Clinics that will Treat You if you’re Over 42 and Want to Use Your Own Eggs – I can’t begin to tell you how many women I have to say that to in a day. If I took a shot every time I told a woman this, I’d be drunk by noon. Women are shocked when I tell them this and honestly, I was too when I first found this out.

Clinics all across the country feel that over 42 (some clinics cut off age is 43, others 45 but overall, 42 seems to be the magic number), there is such a decline in egg quality that they either:

A) Don’t want to affect their success rates (see above point)

B) They genuinely care about you and don’t want to put you through cycling over and over again OR expose you to the risk of having a miscarriage (which can happen when your egg quality has diminished).

Any which way, if you are over 42, I’m not at all suggesting to lose hope, not try or that no doctor will see you but I will say that many doctors will most likely suggest donor eggs. If you’re not comfortable with that, you can either ask the front desk what their stance is on that before making an appointment OR you are welcome to contact me and I can tell you the doctors that will see you. You may have to travel (just wanted to warn you).

Some Doctors Don’t Know What the Hell They are Doing – I've lost track of how many stories I’ve heard through this blog, my job or the infertility community at large where I hear what they are saying and it throws me into a homicidal rage on their behalf.
If you’ve had more than several miscarriages and your doctor says that you’ve just had "bad luck", if you have PCOS and were severely overstimulated to the point where you have over 30 something follicles, if you’re over 35 years old, have been TTC more than a few years and your OB/GYN is telling you that you have nothing to worry about – SEE ANOTHER DOCTOR.

What’s CRAZY is if you read any of the above and thought to yourself, “Is Jay talking about me????”, that’s the thing – I’ve heard all of the above more than a few times. That's how often these things happen. I can’t believe it myself. I’m particularly taken aback by how many stories I’ve heard about OB/GYN’s “keeping” the patient and not referring them to an RE. I honestly don’t get it.

Two Things About Surrogacy – Here are two things I didn’t know about surrogacy that I know now and that I found interesting:

1. You can’t be a surrogate if you’ve never had children previously. They are not only worried about the emotional attachment you may form but they also have no historical data (to put it clinically) on how your body responds to pregnancy.

2. The majority of clinics (if not all) will not do “true surrogacy”. This is when you use a surrogates eggs AND uterus (so, in effect, it’s her baby). It’s only donor eggs and a totally different woman for a surrogate. Same as above, they want to avoid emotional attachments and possible legal drama down the road.

Some Doctors Truly Do Care and Can Help – I’ve had the opportunity to connect and meet with many doctors now that I’m on the other side (so to speak) and I’ve been blown away by how truly caring some doctors can sincerely be. Years ago, an infertile friend of mine who had been around the infertile block more times than most said to me, “In the end, I’ve learned that these doctors don’t care about me. They just want my money.”

Although I can’t say that there aren’t doctors out there who do feel this way (there are many top doctors out there that won’t accept patients with insurance or who only want cash paying patients), I’ve met many fertility doctors first hand who will email me back right away about a patient expressing genuine concern. There are also doctors who really do want to figure you out and get you that baby. To be fair, I can’t mention their names but I do adore them and love referring friends and patients their way.

You Shouldn’t Cycle with Clomid More Than 6 Times – Again, I’m stunned at how many women I’ve connected with who are doing Clomid cycles over and over and over again. Research shows that if you are going to conceive with Clomid, it would roughly happen by the third time AND women who used Clomid for more than 12 cycles developed an increased incidence of ovarian tumors. If your doctor keeps giving you Clomid past 6 months, please break up with them immediately.

Sperm Sorting and the Ericcson Method Aren’t Done in the United States – Mostly people who are interested in Gender Selection ask me this but I did feel the need to mention it as it’s come up A LOT. It’s not FDA approved and it’s not conclusive so if you’re dying to do this and you’re possibly in the mood for a burrito, you would need to go to Mexico which is the only place I know that does it.

Shared Risk Products May Be Slightly Suspect – Mind you, I’m not talking about multi-cycle discounts. It’s the ones specifically marked as “Shared Risk. This is a program where you prepay a certain amount, and in return you get a package of around 3 IVFs. They usually state that if you don’t have a baby after those three cycles, you’ll get a refund. 

However, you have to “qualify”. (Note that I’m putting qualify in quotes which is my form of using punctuation for sarcasm.)

When you “qualify”, the odds are that they know you will most likely get pregnant on the first try. A very small percentage that they even accept in to the program will actually need all 3 cycles nor will they ever get their money back.

If you do not “qualify”, that means that you, like the average, will need all three cycles. So, the clinic feels they may lose money if they offered you the shared risk deal... which is why you wouldn't "qualify". Perhaps your blood work shows a high AMH or that you have premature ovarian failure. They would say you can’t be accepted.

Bottom line, if you are selected, you may have just overpaid for your IVF. 

And yes, I'm worried about the Shared Risk people are no hiding in a bush outside of my home so again, I'm not saying ALL shared risk packages are like this but just be aware and ask a lot of questions.

You are NOT in a Committed Relationship With Your Doctor – If you haven’t gotten the message by now, if you’re not happy or satisfied in any way with the treatment you’re getting, go see another doctor. Really. It’s just that simple. You can love your doctor and think they are a sweetheart but it’s your uterus, it’s a big effing deal and it’s better to take your reproductive parts elsewhere in the hopes of getting the results you want.

Many have told me that they feel bad doing that but this is me telling you not to. You have no loyalty to any doctor, you can easily ask for a copy of your records (you can say you want to have them for your own file) and again, this is too important not to feel like you’ve exhausted all of your options. You never know what a fresh pair of eyes and a new perspective can bring to your case!

It May Not Be ‘IF’. It May Just Be ‘How’ – I say this probably 20 times a day. It may not be if you’ll become a parent, it may just be how you will become a parent. There’s adoption, surrogacy, donor eggs, donor sperm and so many options that if you are somehow lucky enough to afford it, it may help you get to where you are hoping to be. When I was cycling, I don’t think I really know all the options I had available to me. That sounds silly but it’s true. Of course, you may not want to do any of the above which is totally fine as YOU have to be comfortable but it is comforting to many to know they do have many resources open to them.

It’s OK To Stop Treatment – I’ve mentioned a lot recently on here about how much I would have loved to have had a second child. Granted – I’m in the fortunate position of having had one child through IVF but no matter where you are in the infertility journal, if you feel you just can’t do it – that is ok. You’re not giving up. You are just putting your hope and future down another avenue.

This is sort of how I feel about not pursuing treatment to have a second child. My husband and I just feel we can’t go through all of that again (nor can our bank account). I recently wrote myself a letter on this so years from now, when I wonder or possibly regret what I didn’t pursue it further, I can read it and remember how I came to this conclusion, that I did think about it and that I have very good reason.

I’m sure there’s more I could list but those are the ones that come to mind. I do want to add one more though but I say this often on here and I did know it back then. Still, there are many who have asked me about this so I want to say again that if you are trying to have a child or expand your family to some extent and you haven’t see a doctor, please do. That sounds simple but quite often, when I suggest this to people, they’ll say, “Let me try one more cycle on my own.” Or “After the holidays…” Or “I’m hoping to get pregnant on my vacation.” If you’re under 35 years old and have been trying for over a year or you’re over 35 years old and have been trying for over six months, please, please, please see a reproductive endocrinologist. I sincerely want to spare you the regret you may feel years later for not getting started sooner.

Now, all of those are the serious, educational points I wanted to share. On a lighter note, I’d like to throw in the following mini-list:

- You are NOT a horrible person if you don’t go to baby showers or occasionally not have the nicest thoughts about pregnancy announcements. You’re human, this sucks, stop beating yourself up.

- FOR THE LOVE OF GOD – HAVE A SENSE OF HUMOR ABOUT INFERTILITY OR YOU WILL LOSE YOUR MIND. IT'S UTER-US PEOPLE! WE'RE ALL IN THIS TOGETHER!

- It’s ok to indulge in a Golden Girls Marathon and eat chocolate if that will keep you sane (not that I did that every Saturday night while trying to conceive. Ahem. *Cough.*)

- Take comfort in the infertility community at large. They are an amazing, supportive group that will claw anyone’s eyes out if they so much as look at you funny. I recommend my friends at Twitter (let me know if you need me to introduce you to people!), FertileThoughts and of course, the phenomenal, supportive people of Resolve.

- If you can (and I know this is easier said than done), please don’t feel ashamed of having infertility issues. You did nothing to deserve this, it’s a medical issue, you’re still fabulous and don’t you dare let anyone tell you differently. I will be happy to smack them for you.

And if any of YOU have any lessons or things learned that you'd like to share - PLEASE COMMENT!

With hope and humor… always,
Jay

34 comments:

  1. I would add to the part about Clomid: Do NOT take Clomid unmonitored! OBs like to give Clomid without following up with ultrasounds or bloodwork to make sure you're responding appropriately. That's a terrible idea. Demand to be monitored or get thee to an RE!

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  2. I recently learned about the "true surrogate" bias when sharing my mother's information with my RE. She actually was a true surrogate (her uterus, her egg, my half sister that I see every few years or so) 14 years ago and my RE was shocked and thought out loud that this isn't legal or at least isn't allowed anymore. Also, the irony that my mom was SO fertile she could have a kid for someone else is not lost on me ;)

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  3. Thank you for this. I'm fortunate that my bfps have been natural but i have had 2 mmcs, and your points at the bottom about dealing with infertility issues made me smile :-) xx

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  4. Great post Jay! I conceived Molly on cycle 3.3 (third fresh after two fresh and three frozen had only resulted in one m/c) the advice about moving on if they keep telling you that everything is ok is spot on and also move if you feel your current FS / RE is not providing you with the right support or protocol. That's what finally got my daughter. This community was my saviour during three years of hell. I feel fortunate to have found it.

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  5. Great points. I'm finally past the infertility testing and treatment, but it's amazing how many people I know act like they have all the time in the world. Even though they know me!

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  7. What a great post! I wholeheartedly agree with all your pointers and advice. I wasted too much time with a GYN who told me that heavy midcycle bleeding was due to stress (turned out I had a huge polyp) and an RE who didn't seem to really give a s**t about why I wasn't getting pregnant. So glad I followed my gut and changed docs. Keep up the great advocacy!

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  8. Hi Jay, As I read your post, I was astonished to read about the age limit imposed on women trying to have babies.Our eggs age but the science is advanced enough now that we've seen women in their 50s carry a fetus to term. That said, another thing that weighs on my mind is the exorbitant cost which immediately narrows the field on who can/can't take advantage of the great information you shared.
    Elizabeth from ICLW

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  9. I am so in love with this post! I am hoping that I am a first and only 1 time IVF'er, but it is good to know that if it doesn't work it does not mean it wont work another time. Love this!

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  10. Love this post and will be sharing it with my IF community! :-)

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  11. i should have found your blog three years ago. my infertility story had a happy end (two happy ends!) but before that i had severe problems with the laughing part!! i admire your spirit, thank you for reminding the ladies of what is probably most important during the time in which we are impatiently waiting...

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  12. I LOVE THIS! Thanks for sharing! Great info!

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  13. What a wonderful post! A lot of these things I wish I had known at the beginning of my TTC journey, but thankfully I learned a lot of them through the IF community and my own researching. I'm happy I can point people new to IF your way so they can read this post!

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  14. Going with your gut and getting the HELL away from a doctor you don't feel is right is KEY. I am SO GLAD and eternally grateful that I did this. I am convinced I would not have my boys with finding the doctor I tearfully embraced for "believing" me on my first visit to her clinic.

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  15. Shared Risk plans also don't usually cover the costs of meds which can be thousands on top of what you're already spending. Meds costs are not refundable - something else to consider when pricing out these plans.

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  16. That's a lot of information to process! I'm glad you can take it all in with humor!

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  17. I'm investigating surrogacy right now (to become a surrogate after infertility - figure that one out!) and was surprised to learn that laws about surrogacy vary by state. It is actually illegal in some states; including New York and Michigan. I live in Illinois, which is considered one of the most "surrogacy friendly" states.

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    1. I'm kind of interested in this as well. While my eggs and hubs sperm aren't great, my uterus knows its stuff. I wondered if that was a possibility as I'd love to be able to help others going through IF.

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  18. Thank you for this post. I unfortunately learned them all along the way. I do wish we had been ready to visit a RE earlier in our 4+ year journey, but we weren't ready. We really thought, "a few more months to try a natural cycle" or "after the holidays".

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  19. Wow, what a comprehensive post. This is really useful. I learnt a lot of this the hard way too, but that's life. I also really like what you said about breaking up with your doctor - that certainly worked for me. In my case I had to do it twice!

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  20. Hello from iclw. This was a fantastic post. I especially related to the first one about 3.2 cycles (unfortunately we did 3, and didn't want to do it anymore, so went the adoption route). But I remember reading forums where it seemed like EVERYONE got a take home baby the first try. It's so good for people to realize that is NOT the average! Thanks for being such an advocate.

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  21. Excellent post! 2 REs and an MFM all told me that my 4 consecutive m/c (in the span of 1 year, I might add) were "bad luck." Infuriating. Ironically, it was my OB/GYN who took me the most seriously of them all and didn't make me feel brushed off. She nor the other docs were ever able to figure out the problem, but I did appreciate her helpfulness. We are moving on to adoption so it's all the past now. Still frustrating though.

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  22. What a great post! I have been around the block myself--earned, it seems, an honorary degree in fertility, switched doctors several times, etc.--and I would find it maddening when girls in my support group or whom I'd connected with in forums online would do the same ineffective treatment over and over again as if they were married to their doctor. Or whose doctors were making decisions that were so clearly medically unsound that I thought I might scream. A girlfriend of mine did 4 ill-fated IVF cycles (among other treatments) before I (almost, but not literally) shook her and said, "You need a new doctor! I'm sorry. You do." She did one cycle with Davis @ Cornell and is 5 months pregnant after seeing the best egg quality in her whole history and was even able to stick a frostie in the freezer despite her DOR Dx. Sadly Davis did not get me pregnant, but he is one of those doctors who cares and wants to solve your difficult puzzle. Thanks for writing this!

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  23. Good point about the shared risk programs. It's like insurance - the rates are set so that the company makes money, so on average they don't think you'll need their services. I actually don't know anyone who has used them that felt they got value, either because they didn't need all the cycles or didn't have any embryos to freeze for FETs.

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  24. Not to sound like the Xfiles or anything, but
    Question everything!!
    What is that test for? Why do they want to run it? What would the results mean? Why are they choosing this protocol over that protocol? The better informed you are, the better you can advocate for yourself!

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  25. Wowsers. Here from ICLW... this was super informative and helpful (and scary at times, haha). Thank you!

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  26. Thanks for the reminder that you can break up with a doctor. I tend to be loyal, but don't want to waste time with a doctor that doesn't listen.

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  27. I so admire you for your advocacy and being so outspoken. I really try to be open and honest and not feel ashamed about my infertility. What I struggle with most is how uncomfortable it makes other people when I mention it or tell them about it. I feel guilty for putting them in that position where they feel like they need to say "oh I'm so sorry" or give stupid advice. So I often don't mention it to spare them from their own awkwardness. It's tough!

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  28. Uter-US? Genius! I've never heard that before. Thanks for the laugh.

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  29. I am new to your blog and love it already--thank you for the information and doses of reality and humor. We have been trying to conceive for 3.5 years. We had an easy, uneventful, naturally-conceived pregnancy with our daughter 4.5 years ago so the fact that we have been struggling to get pregnant again has been frustrating to say the least. I am on fertility doctor #4, and though they all (including the current) have said that since I've been pregnant before and all our tests have good results we should be an 'easy' case, my gut finally agrees in the hands of this doctor. So, after several IUIs, several months on Clomid/Femara, and a surgery for suspected endometriosis with the others, we are getting ready to spend the rest of our borrowed money on IVF. I was not aware that average IVF success took 3.2 times--am glad to know that. I was also not aware of the infertility support groups; I have felt so alone for so long. So thank you for that as well.

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  30. This post is the most helpful and informative thing I have ever read. You are my new hero. I took notes and am going to kick my conception attempts into high gear.

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  31. I'm a long-time reader but am here for ICLW. The idea that you can break up with your RE was a tough one for me, as my RE and his partner were the only two in the STATE! Had IVF #2 not worked, I was truly torn as to whether I was going to be willing to travel hundreds of miles to the next RE, or throw more money at the current doc.

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  32. Hi from ICLW! This is a great post with lots of info! Thanks for sharing :)

    waitingforbabybird.com

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  33. Hi from ICLW. This has such great information! I really enjoyed reading.

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