Dealing with IVF & Fertility Related Grief

greenhillgirl · April 2018

I've just come off my first failed transfer and have 2 failed IUI's under my belt as well. I'd love to hear others thoughts on dealing with IVF & Fertility related grief and what it is like, how to handle it, etc. beyond just the standard "It's difficult" that we all hear.

I read the book Unsung Lullabies: Understanding and Coping with Infertility a while back, which helped me cope with letting go of a natural pregnancy being something that would ever happen for us and choosing to try IVF. Has anyone read it or any other good books that helped them- even indirectly related? I liked how the authors talk about each person struggling with infertility having to let go and grieve for the stories and fantasies they told themselves about what pregnancy and parenthood would be like for them. We all have these dreams without realizing it.

Also, how long did you decide to grieve before you decided to try again or go on to a next step? These are all just things I'm thinking about these days. Thank you.

prudence9-2 · April 2018

***TW****
I had 5 failed IUIs, 4 failed FETs of PGS normal embryos (1 m/c, 1 cp and 2 bfn)
*** end TW***

I didn’t have the privilege to grieve as time is not on my side (I’m 42.5). So I jumped from one cycle to another with no breaks. What helps me usually is making plans for the next cycle and maybe making small tweaks in the protocol.

Example for protocol tweaks:
- tried adding neupogen in case it’s immune issues
- did era to find exact window and found out I need 12 more hours of PIO.

** edited to give example of protocol tweaks

[Deleted User] · April 2018

it is so hard. I'm so sorry about your last cycle. For me, I remember getting our diagnosis, and just how painful that was. I really was not in a great place for a while there, but then we had months and months of testing and things like that to draw it out and give me a chance to wrap my head around in some way. We didn't have the option of IUI available to us, so in a way, with our diagnosis, it felt pretty fatal. Like you were talking about, grieving that loss of your natural fertility as a couple, the chance to have a spontaneous pregnancy. It was a really tough thing to get through, and to be honest, took me to a pretty dark place for a while there. But through lots of soul-searching, we were able to come to a place where we were ready to try IVF. That alone was like climbing a mountain.

****TW loss / IVF success****
Our first CP was pretty devastating, but we were lucky enough to be able to just dive right into the next cycle. That really helped me to be able to move on quickly, even though of course it might not have been completely processed in my heart. At least we were moving forward and we were doing something. So while we never had any failed IUIs,

<div class="Spoiler">and were lucky enough to have our second transfer stick,</div>
we still have no idea what will happen in the future when we are trying for siblings, so that is a daunting thought. We are trying to just hope for the best, and keep it in today. But I would be lying if I said I wasn't scared about how much more loss we may have to face in our subsequent transfers. [ ETA Even last night, when the subject came up, DH was pretty adamant that he didn't want to consider another retrieval. And if so, then that's it. The fate of the rest of our future family lies waiting in a freezer. :/ ]

I do think that failed transfers have a way of being extremely hard because we know how much is on the line. How much blood sweat and tears, how much money! And we may have even more extenuating time factors going on as well.

I did a lot of praying about it, a lot of journaling, and a lot of really just leaning on women I knew that had been through it already. People that get it. I believe there is a title called, "Anchored in Hope," a book of daily devotionals for IF,
https://www.amazon.com/Anchored-Hope-devotionals-Ali-Forrest/dp/1519370075
that I have heard good things about, as well.

Please know that if you are not alone, and we're here for you, no matter what.

*autocorrect / TWs / ETA link

emerald99 · April 2018

I'm new to this stuff, just went to a bunch of doctor appointments to learn about my options. Will likely start IVF in May. Thank you for the book recommendation, I hadn't heard of "Unsung Lullabies" and I will definitely check it out.

LadyMillil · April 2018

I joined a local IF support group and just being able to talk to people going through the same things I was helped. We did treatment cycles back to back but ended up with almost a year between IUI and IVF due to moving across the country and the new clinic having a long wait list. I'm not sure how long I grieved for because it was clear I would have difficulties my first cycle off BCP so when we finally saw an RE and got diagnosed it was a relief to actually be doing something that could work.

mcgeeva · April 2018

First I'm sorry your struggling and that your last cycle didn't work. I've never read any books on this stuff. I knew I had issues before we even started trying to when we were ready to have kids I never bothered with the "let's try for a year bs then get help" and instead went to three different doctors to get it going. So going through all that I knew it wasn't going to be an easy road. Having a good man (or woman) definitely has helped. If I was married to someone who ever said to get over it or anything like that I wouldn't have turned out okay. I have no one IRL that understands my struggle. I talk to you all and my therapist sadly. After this past summer she urged me to wait at least 6 months after the last miscarriage to refocus and grieve before starting up again. I already accepted I would never get pregnant naturally years ago but when I randomly did I thought it was some gift from god. When it didn't work out I internalized it as I wasn't worthy enough to experience that natural exciting surprise pregnancy. Ovulate once in 8 years on my own definitely seemed like a miracle. Took a few steps back. Happened a second time the day before I was going to move forward with genetic testing and that's when I had to take a break. It crushed me. Spoke to our doctors and was told it would never work out. I stopped treatments but during that time I still got my testing out of the way. I think it's easy in a moment to read other people's stories and you see some have it worse then you and you see your blessings in that moment, but sometimes it's hard to see past the hell your in at that point in time. Believing in the future life I think keeps most of us going. A lot of people have deeper faiths then I and I think that's how they cope but I really don't know. Hang in there...

radmom27 · April 2018

@greenhillgirl I'm so sorry you're going through this. The pain associated with infertility is truly indescribable until you personally experience it. I have to say that being on these boards has been a godsend for me. I really don't have many people to talk to about this in my real life so it's so nice to know that there is a safe place to compare stories and not feel so alone.
****TW****
I've been going through fertility treatments for the past 4 years and know that I've had > 10 transfers at this point but have officially lost count. I've had one miscarriage at 11 weeks and multiple other chemical pregnancies and countless BFNs. I have moved onto donor eggs.
****end of TW*****
I'm in the same camp as @prudence9-2 in that I am 41 and do not have time on my side. The thing that helps me to move on each time is having a plan for next steps. I've been adamant throughout these four years that I will not give up. I also try hard to try to consider the things in my life that ARE currently going well and that I'm happy about and grateful for.

This process is so incredibly hard and isolating. I am forever grateful that I have people on these boards to talk with that help to lift me up and give me hope.

ASabelko · April 2018

Since our diagnosis (severe MFI) last April, we've constantly been in the process of waiting. We couldn't start a protocol for IVF right away because we'd planned to go on a mission trip to Haiti. Because of the exposure to Zika, we couldn't try anything until this past January. We did IVF with a fresh transfer (1- 5-day blastocyst) which failed. Now we've decided to wait so that I'm (fx) not due during my brother's wedding next January. SO our next protocol will start at the end of this month with a FET at the end of May. The space between everything has been hard, but I think it would have been harder to make a decision without life-circumstances (planned vacations and brothers getting married 2 states away) making choices for us.

I've constantly felt like everything is not only out of my control but also like my life is being planned around the convenience of everyone else. So, I feel like I've gotten really cynical about things. One book that has sided with my snarkiness has been "Every drunken Cheerleader, Why not me?" by Kristine Waits. The one I'm just starting to read is "The Art of Waiting" by Belle Boggs. I think what's been most helpful has been learning more about other people's journey's and remember that other people are in the same boat.

sarah_fox · April 2018

This has been on my mind a lot lately too. I think everyone knows it's going to be hard not to have a baby as quickly as you'd like or to deal with losses, but I wasn't prepared for how attached I am to the idea of getting pregnant on our own and how hard it is to let go of that dream. I'm not sure I'm done grieving and getting over that. We're starting IVF in May and I'm confident my brain's going to spend all the time between now and then convincing me that there's going to be some last minute magic that saves me from all those injections.
I wish I knew what worked well and what doesn't, but for me it doesn't seem like there's any consistency. There are times I will think it's going to be a really tough month and it's not so bad, and other times I think I'm prepared for the disappointment and it still sneaks up on me. I think the biggest things I have found are:

1. Learning to be ok with whatever response I have. I have a tendency to beat myself up mentally when I let myself get my hopes up and I'm wrong, but I'm learning to just accept that it happens and it's ok, and it's actually easier when I don't fight myself about how I feel and just let myself be.
2. Learning not to plan my whole life as if I'm going to be pregnant soon. When I look back at the last three years, I mainly wish I hadn't talked myself out of signing up for fitness classes or races or working harder to find a new job, etc. because I'd hopefully be pregnant soon. I finally joined a roller derby league this past fall so at least I've got something to keep me busy and to remind me that there's more to life than getting pregnant.
3. Meditation. I'm so bad at keeping up with this, but I notice a huge difference with how well I manage my emotions when I do mediate vs. when I don't. I use the Calm app which has lots of great free meditations. I need to work on making this a habit!

I'm going to look into the books people have mentioned because they sound helpful. "Every Drunken Cheerleader, Why Not Me?" sounds EXACTLY like what goes on in my brain about all this half the time. lol

tosh24 · April 2018

I honestly think I need to bite the bullet and see a therapist. There is one near me that my naturopath recommends but I've been so tapped out financially with everything else I'm doing (treatments, naturopath, acupuncture, chiropractor, massage) that I haven't contacted her. I haven't read any books or joined any groups due to the fact that I'm TFAS, so I'm in this awkward in-between. Like, I don't fit in with the fertile myrtles but I'm not fully accepted by the IF crowd either and feel a lot of guilt about being sad about my situation (you ladies have been great though). It's a really lonely place. I do find hope in other people's stories and try to seek out happy ending stories when I can.

I've been TTC for 6 years with *TW 2 miscarriages */TW, 5 IUIs, 1 IVF cycle and two failed FETs. We haven't told any of our family that we're TTC, let alone about any of our treatments. They're all popping out babies on the first try anyway, so it's not like they'd understand. I have had some family members ask if I'm OK because I have been withdrawn, so I guess I'm not hiding it all that well.

I'm not going to lie, I'm not doing that great emotionally. I'm angry, bitter, jealous, defeated, scared, riddled with anxiety....but it's not in my DNA to give up. I've never been able to walk away from any obstacle I've faced, I'm too stubborn. It scares me that I may not have a choice this time, but what does make me feel better is to have a plan. Since Nov 2016, I've only taken the one cycle off after my D&C. It makes me more anxious to take a break. I need to be marching forward or I start to spiral. I've jumped right back into treatments/TTC the cycle after every failure and each loss. I'm always planning my next few cycles before I even know if I'll need them. I don't think I'll ever get to a place where my grief has been dealt with - it will always be with me and living with it will be a constant process.

I think a good guide is to really listen to your gut and know yourself. I know that it's worse for me to have time off, but for someone else, that's exactly what they might need. I have a coworker who had a failed transfer in August and she didn't feel ready again for a FET until the next January. It's OK to need/want a break and take one. It doesn't mean you are any less strong. It means you're smart and taking care of yourself and giving your heart and mind what they need to continue to fight this fight.

mcgeeva · April 2018

tosh24 do it! I swear by mine. Sometimes it's hard to find a good one you love but when you do it offers comfort for sure and some ways to push forward.

Bababatty · April 2018

@greenhillgirl I'm so sorry you're going through this. I remember how devastated I was when our first transfer failed. I mean, I basically had a nervous breakdown when our first IUI failed, but this was so much worse because we'd invested so much more time, money, pain, and emotional energy into it. So I understand what you must be going through.

*TW -- CPs mentioned*
Since then, we've done two more FETs, both of which resulted in CPs. After the first, I wondered how I could ever do another transfer again because you have to get through so much just for the "privilege" of having a loss. With the second one, I went into a deep depression (refusing to eat, refusing to move from the couch, watching sad movies, so. much. crying.) that luckily lasted just the weekend, although I spent the next two weeks periodically bursting into tears. When I started crying over something stupid at work, I knew it was time to call a therapist (I'd been seeing her for a year up until the fall in a group setting, but there weren't enough people to sustain the group, so I hadn't seen her in almost 6 months). The worst thing has been the loss of hope; now I can't even be happy when I get a good beta number or a strong HPT because that happened the second time and it was all snatched away two days later. How strange it is to go from never seeing a positive test until November to not even being able to be happy when I see one.

I cannot tell you how helpful it has been to see a therapist one-on-one who specializes in infertility. I highly recommend it. One thing we've talked about is my feeling that IF has taken so much more away from us than hope and time; we've also neglected friendships out of a fear that someone's going to drop the pregnancy card on us. She's encouraged me to, essentially, suck it up and reach out because sometimes hiding to protect your heart actually makes you hurt more.

My therapist says that however you're reacting now (even if it's the lowest you've ever been in your entire life) is not necessarily the way you will react the next time it happens (if, God-forbid) you have another failed transfer. There are so many environmental, emotional, and hormonal factors that dictate your response. That didn't necessarily make me feel a ton better, although it can be helpful to know that you won't always be wallowing on the couch (if you're me). In the case of a loss, she also said that in their next cycle, most people tend to be very nervous right up until the point when they previously suffered a loss and then things get better. (That doesn't really help you deal with your situation now, but it might help quell any fears that you'll be a nervous wreck for your entire pregnancy.)

In terms of time off, personally I've found that a one cycle break is all that I need but inevitably I end up missing 2-3 cycles because of additional testing or life getting in the way. I hate the waiting, but it does actually help my nerves and I get more excited as it gets closer to a transfer (rather than dreading a transfer for the potential bad news it might bring).

For books, I also read "The Art of Waiting" about a year ago and liked it very much at the time. I will warn you that she does finally get KU from an IVF cycle and talks about how she knew well before the beta, which just means that every cycle I SS like a crazy person. So that was really not helpful. Personally, I now have a hard time hearing even IF success stories if they don't take multiple IVF cycles and lots of heartache. I hate that I've become that person, but it's hard to control. So take an honest look at yourself and what "triggers" or upsets you in terms of the kinds of things you can read about. I mostly avoid reading anything now because either the author finally gets KU or they moved on to adoption, surrogacy, etc., and neither is helpful to me. However, the "Unsung Lullabies" book you mentioned sounds very relevant to me, so I might look into that.

Sorry, that's very long, but hopefully somewhat helpful!

greenhillgirl · April 2018

sarah_fox I agree that while you are waiting for IVF you will still be holding out hope. The very last period I had before starting IVF I was like "Wouldn't it be great if just at this time I spontaneously..." each thing like that was a little loss but also moved me closer to full acceptance that it wouldn't happen.

greenhillgirl · April 2018

I agree with @mcgeeva that a therapist is great and wish so many more people had the privilege of being in therapy @ tosh24 I have made sacrifices to continue seeing the same person for over 10 years and she's amazing since I suffer from major chemical depression that is very hormonal and genetic. She doesn't specialize in infertility, though, so I can definitely tell sometimes she doesn't get it as much as I would like. But she knows me and how I cope and deal so she's great for me to feel like I'm taking care of myself as much as I can.

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