Wednesday, March 13, 2013

infertile again



I haven't been feeling infertile lately. It was sort of strange going to the clinic, having the ultrasounds, taking the medications. I had a child a little over a year ago. The birth went well. Nursing went well. Motherhood entered into every single moment of every single day. So how could I be infertile? Also, lots of my blogging friends have been getting pregnant with their second child, many without treatments. I've often wondered if I'd be one of the lucky ones whose reproductive shortcomings are miraculously healed by their firstborn.

Despite a sluggish response to clomid, I was pretty confident the first treatment cycle would work. But it only took one negative pregnancy test to cure my denial and make me feel completely infertile again. The nurse called, and I could tell by her hello that the news wasn't good. So with one little word from a woman I've never met, infertility came crashing back into my life. 

My ignorance is gone, but my hope remains. In fact, I feel just fine about that negative pregnancy test. I told the nurse that I wanted to take a month off, so I’ll start my next treatment cycle after a round of birth control. I have this hunch that my body needs a reset after two years of infertility treatments, IVF, pregnancy, birth, a year of nursing, weaning, and then less than two weeks off before starting fertility drugs again. I’ve also heard that cycles following a month of birth control tend to be more successful. I mentioned that to one of the nurses a while ago, and her response was patronizing – “If that was true, we’d have everybody on birth control every other month.” Does anyone have evidence for or against this claim – anecdotal or otherwise?

Another benefit to taking a break from treatments is that it will give me a chance to really focus on getting healthy again. Two months ago, I weighed less than I did on my wedding day. I felt so good, super healthy and fit. I had been eating well, exercising regularly…and nursing was a big help too. Since weaning Harriet, I have gained 14 pounds. Actually, it’s probably more like 16 or 17 pounds because I had been carrying a couple extra pounds in my chest back then…which is long gone at this point. There was a part of me that was even a little worried I’d get pregnant my first cycle because I didn’t want to start a pregnancy in a place where my clothes are already way too tight.

I am going to work really, really hard this month to get my cardio fitness, flexibility, and strength back. I’m also going to eat well – lots of protein, very little sugar. Losing weight while doing fertility treatments is not only a bad idea, it’s impossible. So having this month of birth control will help facilitate a time-limited period of focusing on my physical health.

I also told my care team that I want to try a different stimulation med next time around. We’re going to do femara instead of clomid. I also requested to be put back on metformin, which is a diabetes drug that can help regulate blood sugar (women with PCOS often have blood sugar issues). I’m curious to see if it will make a difference. I’m feeling positive overall. But those fears still creep in every once in a while – What if this doesn’t work? What if another child isn’t going to be part of our story?

The biggest questions and anxieties center around my care. What if I’m on the wrong meds? What if my doctor doesn’t really know me? What if there’s a better clinic out there?

I have a friend who survived three failed cycles with my doctor (Dr. C) before starting treatments at the Colorado Center for Reproductive Medicine (CCRM). She got pregnant there and she raves about them. Apparently her doctor said that Dr. C had her on the wrong meds at the wrong doses. What if she’s not the only one?

The Colorado Center for Reproductive Medicine has been coming up again and again and again as I read infertility blogs and do research. It seems everybody is either going to CCRM or getting a consult there. I even have a friend who is considering moving to Colorado in order to pursue treatments at this clinic.

CCRM has high success rates and their embryology lab is supposed to be exceptional. I’m not so sure about the lab at my clinic. During our IVF cycle, the doctor retrieved about 19 eggs. Once the eggs were fertilized and given a chance to grow for a few days, we only had three left. Three out of 19. They put two in my body, one of which didn’t make it. So then there were two – Harriet and the embryo they froze in the lab. But then Dr. C told us that our embryo was damaged beyond repair by some person or process or malfunctioning machinery. So now we have Harriet. From 19 to one. I just don’t trust our lab. My eggs are young! They should have been able to save more than just one embryo for us. One of my blogging friends spoke with a CCRM doc who said that their lab has success with embryos that would die in other labs…labs like the one at my clinic.

I like the fact that my clinic is allowing me to take ownership and make decisions about which meds I take. But on the other hand, I sort of want them to say, “Here’s the med and dose we want you on because we have studied you, your body, and your condition, and we are very confident that this is the best option for you.” Instead, they’re just like, “Sure, do whatever you want.” But I’m not a doctor! I have no idea what I’m doing!

So we’re considering switching clinics if we end up having to do IVF. But CCRM seems to be significantly more expensive. And then there are the travel expenses – plane tickets, long hotel stays. And the time off from work. And being away from home for long chunks of time. And figuring out how Harriet fits into all of this.

Part of me thinks, we got pregnant at our clinic! Their version of IVF brought us this priceless gift:

(I'm talking about the one on the left.)



But I just have this unsettled feeling in my gut about the care I’m receiving. Mostly, I just hope it doesn’t come to IVF. I don’t want to have to do that again. I don’t want to have to make those decisions.

Sometimes I even wonder if I should be doing my intrauterine inseminations somewhere else, not in another state, but maybe at another clinic in our area. Our clinic is considered to be one of the very best in our state, but who knows? Maybe it’s not the best clinic for us. I would love to hear people’s opinions on clinics, especially CCRM. If you have received treatments there, what did you think of them? Do you feel like you paid more than you would have paid elsewhere? I’m also considering sending my records to CCRM for a second opinion. Has anyone done that?

Nothing like a negative pregnancy test and all of these impossible questions to make a girl feel utterly infertile.

47 comments:

  1. I'm sorry you didn't get the news you were hoping for. :( Here is my two cents on what we did. I started with Clomid and had no luck, then switched to Femara and got pregnant while on it a few months later. This time around I had started taking Metformin but that was it. And it worked! I know everyone is different, but that's at least my experience. I have heard nothing but awesome things from CCRM. If it involves plane rides for you, that is definitely a big commitment to make, but if your gut is telling you your current clinic just isn't right, then I'd go with your gut. Maybe try another local clinic first just to see if it feels better? Good luck girl, and I wish I had more advice for you.

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    1. It's really great to know that femara worked for you. I hope that femara+metformin will be our ticket to baby #2 as well. Thanks so much for sharing this info. It's really encouraging.

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  2. First of all, boo for a negative pregnancy test. That sucks. I'm so sorry!

    On to the clinic scenario. I totally understand clinic frustration, and my advice is this: if you don't feel good about the care you are getting, start looking into other clinics, even for the IUI's. Even if it's possible for your clinic to get you pregnant, it's not worth the stress, and worry, and second guessing every decisions because you don't trust them.

    I totally get the CCRM debacle too. We've decided if jobs lead us to Colorado, then we will, of course, go to CCRM. Otherwise, we will stay with RBA in GA for IVF. However if the first IVF fails, I would have to seriously think about a consult with CCRM. For us, CCRM is only $1000 more than our current clinic, but the additional costs of plane tickets and travel expenses makes it MUCH more expensive, and well, we don't have the money for any of it right now. I hate that any of these decisions revolve around money.

    I can tell you this. After my three IUI's I was fed up with my previous clinic. I didn't feel like they cared and the financial and scheduling side of things was a disaster. We switched and I couldn't be happier! I love my new doctor, but better yet, I like all of the other staff as well and trust that they do what they say they will. It takes weight off your shoulders to believe in the care you receive.

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    1. This was a really helpful comment. Thanks Amanda. I am so glad that you like your current doctor and clinic. It's so important to have a good team who you can trust on this journey.

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  3. I think getting a second opinion is a wise decision. I have a friend who is going through infertility struggles (just like us) and she hasn't been happy with how her doctor has been handling her case. She's going to set up an appointment to see my doctor and to get a second opinion. It's worth a shot! Especially if you don't feel like they're giving your case the attention that it deserves. You need to be happy with your doctor. I'm praying for you, Em! God is powerful and he is in control. Give your struggles to God, he wants to take them from you and give you peace.

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    1. Thanks (as always) for this really important reminder, Karolyn.

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  4. Em-
    As you know... I love CCRM. Yes it is very very true that Dr. C had me on too much medication. This was realized after we were starting stimulation at CCRM. To compare....At Mpls CRM, I was on I believe about 450IU of meds for stim, and at CCRM, I was on like 225 and had 2.5 times the amount of eggs. Dr. C/CRM basically fried my eggs which is why we had to cancel the first 2 cycles and then didnt get many eggs on the 3rd cycle with them. Dr. Surrey at CCRM assumed I was being overstimulated from the beginning....from our first phone consult. This was a shocker to me.... I thought CRM was doing the right things and knew what they were doing... obviously not. When we were there in CO/CCRM for our stimulation, it was confirmed that my LH levels were going too high too fast. So on that first check on day 4 they cut my Menopur down even more... I really really wish CRM would have checked LH levels as I think that would have gave us more answers then.

    As far as expenses... I do not believe CCRM cost anymore than CRM. It cost more for us becuase we added CCS testing to the mix. But... I doubt you would need that, but it would be up to you and the doctor.

    If your at all thinking of CCRM, I say make a appt for the phone consult.... its free and you don't have to do anything else with them after that if you don't want too... it was nice for us to initiate the care there that way and to be able to talk things through with another doctor. Most of our work up there was covered by insurance thankfully so that helped. If you want more particulars on the cost, let me know. I do have some of it on my blog... but again you may not need the same testing/treatments, etc.

    Thinking of you...
    Hugs

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    1. You have been so helpful throughout all of this decision-making. Thanks for being such a great resource.

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    2. Some of the only advice that I have if you stick to the clinic here at home is have them check your LH if your concerned about the number of eggs your getting. Had I known what I do now, I would have asked them to add those to all the testing we already go in for Hugs

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    3. Just made a note to have them check it. Interesting.

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  5. Hi Emily - I'm sorry to hear about the disappointing news. I have TOTALLY been there. Too many times. I'm not sure where you are going, but I've known several people to recommend Center for Reproductive Medicine in Minneapolis: http://www.ivfminnesota.com/. I don't know their success rates, but a friend who first started at Midwest Center for Reproductive Health had a better overall experience at CRM. Her DR at MCRH told her after several unsuccessful rounds with injectibles that her eggs were bad. Well, even after a few IVF rounds at CRM, she conceived TWO baby boys on her OWN back to back. So, who the h*ck knows?

    AFM, I believe God is telling me and my husband to take time off from TTC (I am trying to resolve some thyroid issues, GI issues and get a better regimen to deal with my MTHFR mutation).

    This was AFTER I bought $1500 worth of injectibles that are now sitting un-opened and un-used in my refrigerator (Follistim, Ganirelix, Ovidrel, Menopur). I can't return them to Alexander's Pharmacy nor will my RE connect with me someone who wants to purchase them. Now I'm trying to sell off my un-used and un-opened injectibles at a reduced price...

    Keep us updated on what you decide to do!

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    1. Thanks so much for the comment, Carolyn. I had no idea that MTHFR could be helped. I'll have to ask you more about that sometime. I have the same thing. So sorry about the medication issue. I really hope you're able to find someone to purchase them. And if you haven't sold them by the time we need them, I'll let you know! We'd definitely be interested.

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    2. Ask about being on Folgard and Lovenox for MTHFR.

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  6. So sorry to hear about your BFN!!! I assumed having a baby would "cure" my body as well, but it took 2 failed IUIs, a failed IVF, and a 3 month break before we got our "natural" BFP. I still don't know if pursuing #3 will involve IF treatment or not.

    Anyways, for us we went with our local clinic for IVF #1. After going from 17 eggs to 3 embryos on day 2 and being told one more bad cycle would equal donor eggs, we decided to switch. We went with a clinic an hour away from my parents that was rated in the top 25 in the nation. We went ahead with their IVF guarantee program and got pregnant on the first cycle with them (as in we paid more than we would have, but wouldn't change the experience for the world!). We went back to them to get pregnant with #2 and got a BFN and I feel like it may have been lab error as we went from 8 growing day 3 embryos to ONE. Then we went to CCRM. The testing alone cost $5,000, but Dr. Surrey was everything I could have asked for in a doc. He was attentive and promised that if nothing else, they would be able to give me answers. I just felt like he knew how to deal with infertility patients well. He got that we were looking for both another THB and answers as to why we were struggling in the first place (even now I'm *only* 27). We got pregnant after going out there for testing and they helped coordinate early ultrasounds and Dr. Surrey himself called with congrats. If we were to pursue IVF again, I would definitely consider going there! The cycle would have cost us significantly more than our other clinic, but it would have been worth it.

    If you get to the point where you want to pursue IVF at CCRM, I highly recommend doing all that you can to build up airline miles and hotel points. You can get a credit card that rewards you with those perks. We were able to travel to Colorado for very little as we had frequent flier miles as well as hotel points. CCRM also coordinates with several hotels in the area to offer fairly competitive prices.

    I'll be praying that you don't have to think about any of this and instead get pregnant from your next IUI!!!

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    1. Another SUPER helpful comment. Thanks so much for taking the time to share your experience. It's good to have the name of a doctor, too.

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  7. I so hear you with suddenly feeling infertile again. Since we've talked about 2.0 timings, and especially since I went into the clinic, it's been on my mind too. And I, too, have lots of infertile friends who had second babies naturally. I wanted that for me as well. It was tough to let that daydream die, but the truth is despite being great at being pregnant, having an uneventful birth, and nursing for 13 months, I still have no menstrual cycle to speak of. Sigh.

    I can't offer any assvice about care but if you are concerned about yours I would definitely seek a second opinion. My clinic is great, and I trust my doctor, but I have to be proactive too in keeping on top of things.

    I am curious as to why they would put you back on IUIs if you needed IVF to conceive Harriet. Was there a specific reason why they think IUIs might still work? We went through four IUIs plus one failed cycle before converting the sixth IUI cycle to an IVF when I overstimmed. My f/s really pushed us to use ICSI on 50% of the eggs since we hadn't yet had a pregnancy and he was not happy about this. He was absolutely right- basically none of the non-ICSI eggs fertilized. So I know a return to the IUI route wouldn't be an option for us.

    best,
    T.

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    1. That's a really good question. We actually never did IUI before moving to IVF the first time around. We did a bunch of rounds of timed intercourse, then tried one IUI. But that IUI wasn't even a real IUI because the sperm sample had too many white blood cells in it (my husband had a cold or something), so they were only able to shoot it as far as my cervix. After that, we decided just to do IVF. We were really sick of the 13% success rate. That's really interesting about ICSI too. And I've never heard of an IUI cycle turning into IVF but it sure makes sense. That must have been some fast decision-making!

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  8. There is nothing worse than that initial realization again that, "I am infertile." I, like you, felt like maybe I'd be one of the lucky ones to get pregnant without treatments post-baby - because "everyone else was." Well, we have severe MFI so all the birthing in the world wasn't going to reset my body that didn't need resetting. Yet, I still believed that I could get lucky too. And then I didn't. And it was so, so hard on me.

    I'm sorry about your BFN.

    BUT - you are infertile and you've walked this path before and I truly believe that you will have another child. You've been successful once, and you have to assume you will be successful again (because the odds are in your favor).

    In regards to CCRM - I believe you should setup a consult immediately - and here's why. My very close IRL friend went to the same clinic as me and just felt like she wasn't getting the care that she wanted. We would swap stories and the doc I was seeing was very much a team member with me, where her doc (different doc, same clinic) just made decisions and they didn't really discuss them. Now - I always told her the difference was because she didn't ask enough questions (she just goes with whatever the doctor tells her in every situation), but she still wasn't satisfied. So - she went to Iowa City (2.5 hours from home) for a consult with their clinic and they told her that they would not do a thing differently from what her doc was already doing. They said that the protocols her doc was trying were being done in the same order they would do them, based on all the testing. There was no testing they suggested beyond what she'd done at her current clinic. She came back feeling very good about her care, and all went well after that. Sometimes, a second opinion can really put your mind at peace. AND - sometimes it convinces you to change docs - and that is OK!

    You need to feel comfortable with the care you're getting, and I don't think you're going to be comfortable until you talk to, and possibly move to, someone else.

    Good luck!

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    1. Thanks so much for this comment and for sharing your friend's story. I think I'm going to set up a consult...for sure. I just have to decide on a doc.

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  9. I don't have any experience in this or advice to give but I just wanted to drop you a quick comment that I'm praying for you, Andrew, and Harriet's future sibling. Someday (hopefully sooooon!!), a little one will be lucky enough to call you their mommy.

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    1. Thanks so much for your prayers Crystal!!

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  10. There are so many "what if's" during this process it seems. You just wish someone would tell you exactly what to do about everthing or at least that's how I feel. I think the most important part is listening to your gut feelings, you should be at a Dr you are totally comfortable and happy with :) Keep praying and God will guide you in the direction you need to go. Hopefully you get that BFP soon :)

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    1. Thanks so much for the prayers and encouragement. I really appreciate it!

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  11. So was questioning my care as well. The cost is not much more than our current clinic but the wait time to get a consult is at least a few months out. So if time is of the essence, I would book your phone consult now. You can always cancel it if you decide to stay where you are at.

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    1. I am so interested to hear how your consult goes, Jessah!

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  12. I'm sorry for the BFN. Thos always suck. Always.

    I totally know what you mean about seeing other people's good news of easy roads to number two and hoping it will be the same for you. There were three "holy sh*t I just found out I'm 5 months pregnant and didn't even realize" announcements from IF veterans when I was embarking on TTC#2 and I was sure we'd have an easier time of it too. A year and two IF diagnosis later, I was just so devastated that their stories were not my stories. It's a legitimate loss, one that deserves to be mourned.

    The clinic stuff sounds hard to figure out. I think previous posters had great advice. I always recommend going with one's gut, even if it's just to take first steps.

    Good luck with everything.

    Abiding with you.

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    1. Thanks so much, Esperanza. Five months pregnant and didn't even know it!?! Whoa.

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  13. First, I am so sorry about the negative test. So upsetting. It is amazing how fast all of those 'old' IF feelings come tumbling back when TTC#2.
    While we now live in Colorado, we lived in Washington State when we were TTC#1 - we briefly considered coming to CCRM since I have family here and so we wouldn't have to pay for hotel, etc. But, the cost was prohibitive and I didn't like that they would make us repeat every single test we had already had done, even though some were just weeks/months beforehand.
    We actually went to 3 different clinics in Oregon (we lived right across the border). We were not happy with our first clinic, which was supposed to be very good, for various reasons - not the least of which being every time we saw our doctor we had to re-explain everything from day one, it was like he had no idea who we were. And they did an IUI one time after I am certain I had already ovulated, talk about a waste of money.
    The second clinic we went to had a great reputation and we were happy with them, we likely would have stayed with them, but opted for our third clinic due to cost (they offered a 'cash discount' for patients without IF insurance coverage, making DE IVF within reach MUCH sooner than it would have been otherwise). But, had we not been so comfortable with that clinic, we would have gone back to the second.
    Ultimately, it came down to finding a doctor and clinic we were comfortable with and could afford on the timeline we wanted. I think, if nothing else, it is worth getting a second opinion. Go with your gut, this is too important not to.
    Good luck!

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    1. That first clinic sounds just miserable. I can't imagine having to constantly re-explain everything. Good for you for switching. That cash discount thing sounds amazing! Glad that worked out for you!

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  14. Gah, I'm just petrified of getting back into this exact same quagmire of fear and doubt. Just knowing that I'm actually IN a cycle right now makes me freak out. *sigh*

    Also, I hear ya on the weaning weight - it was a little shocking to me how quickly it piled on! Good luck taking the next month to really focus on your health and yourself - I think that's a great plan!!!

    We used CCRM for our injectibles IUI cycle, and I have nothing but GREAT things to say about them. The initial testing cost us $2,500 (they call it the ODWU - One Day Work Up), but it's worth it. Here's a breakdown of our costs - http://mycheapversionoftherapy.com/ttc/the-cost-of-ttc/ The initial phone consult was $250, but Dr. Surrey totally sold me on using CCRM. Their success rates for IVF are just SO much higher - it seemed silly to not use them since we had to drive 6 hrs to an RE either way.

    http://apps.nccd.cdc.gov/art/Apps/FertilityClinicReport.aspx

    Good luck!

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    1. Also, they are SO used to working remotely with their patients, and that is super helpful. Once we did all of the testing and meetings with them and got a plan in place, I did the monitoring at my local OB's office (which was super handy and saved us money) and they just faxed the lab and u/s results to Denver after every appt. Of course it would have not been as feasible to do that with an IVF cycle, but for IUI it was fine.

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    2. This is all really good to know, Josey. I'll have to check out the links you shared too. I was under the impression that the phone consult was free though...hmmm.

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    3. According to their website: The initial consultation takes about an hour and costs $235. For our out-of-state patients, we offer an initial consultation via phone for $250. For international patients, we offer an initial consultation via phone for $295.

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    4. EM,
      Mine was free.. and I think my friends who are in MN were free, it depends on the state you live in.

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    5. Yep, you're right about that. If they don't have any any doctors licensed in your state, it's free.

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  15. I don't really have any advice other than if you are feeling unsettled about where you are at, I would encourage that second opinion. I have to say, I would rather have doctor's be more involved rather than telling you "whatever you want." No, tell me what is going to be our highest chance of success! From everything you've written, I would question them a little too.

    Also, you have totally motivated me to MAKE time for my run today! I just went and plugged in my Garmin (running watch) because the battery was dead. It's been awhile since I've used it, but need to get going because I've signed up for a race in May.

    And that is such a cute picture! How did you ever get them both to pose so nicely? Love it!

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    1. Thanks Amber! I think we got lucky with that picture!

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  16. Sorry I don't have any advice on the clinics but I am glad to see lots of other ladies above have commented with their experiences. I hope you figure out what works best for you and your family. I am also really sorry to hear about the BFN this month with the Clomid. Part of me is happy that AF hasn't returned yet because until then I can still hold out hope that I will be one of those magically pregnant with #2 after a couple months of trying, cases. We'll see. I really hope you don't have to go as far as IVF and things happen for you sooner rather than later. I am sorry you are back in the world of IF right now :(

    You're scaring me with the weaning / weight gain talk!! I am finally so happy with my weight / body that I am considering never weaning... EVER!! ;) I barely exercise.. I mean BARELY.. so I know the nursing is keeping me where I am. Scary to not have that anymore!

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    1. The weaning/weight thing is definitely to be feared! (-: I wish I would have had a better plan going into it. That really would have helped. I expected to have to make some changes in my diet/exercise but I didn't realize how much I'd have to change. Ugh.

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  17. hi!
    i just found your blog. first, big hugs.
    second. i want to tell you that for 22 months i tried a whole lot of crap to get pregnant. what i truly believed made a difference in getting my first positive, was a month of birth control. being on metformin. and letrozole (which im told is just like femara).
    all in all. i will be thinking of you. and hoping for you!
    stay strong mama

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    1. This is SO GOOD to hear, Sarah! Thanks for sharing your story. That gives me a lot of hope and confidence that we're doing the right thing!

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  18. I went to a clinic for 4 IUIs and started feeling like they were missing something. I was told over and over again by my original RE that I was young and healthy so there was no reason why I wasn't getting pregnant. After 3 failed IUIs I started researching and I found a ton of information about natural killer cells, autoimmune issues that could impact fertility etc. I asked my RE about it and he brushed me off as if I was a silly school girl and that he was the expert. We decided to give it one more try and it failed. We began researching other clinics who tested for the things that I was inquiring about and found a doctor 3 hours from our house. I was tested for everything that I had asked my former RE about and all came up positive. This doctor was able to treatWe did a fresh IVF cycle with 2 embryos that failed, then we did a frozen cycle, I got pregnant and miscarried. 3rd time was the charm for us. We got pregnant with twins after the 3rd try. Honestly, I know that I wouldn't have gotten pregnant if I would not have trusted my gut. If you think that they are missing something or that you don't trust the lab, I would look elsewhere. Even if you decide at the end of the day to stay there, at least you know that you researched and looked at all of your options. Trust your gut.

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    1. Excellent advice. Thanks so much.

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  19. What a great blog, truly inspiring.
    It's so great to see you've gone into detail, and aren't afraid to be honest and open. The IVF process can be a highly emotional one, and does not always have a happy ending, so it's refreshing to see someone speak so openly about it.
    This would be an invaluable resource for anyone looking to take the first step on the IVF journey, and because it's your personal journey, this will really help those people associate, and could convince them to start the journey

    Inspiring words.

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  20. Useful information shared. I am very happy to read this article. Thanks for giving us nice info. Fantastic walk through. I appreciate this post.
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  21. Infertie again discussion is very helpful for me and another benefit to taking a break from treatments is that it will give me a chance to really focus on getting healthy again so I have to say that for the last few of hours i have been hooked by the impressive articles on this website. Keep up the wonderful work and if you want more info about this topic then visit pregnancy miracle system

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