Friday, August 14, 2009

Trying to conceive made me infertile.

So what went wrong? How did we get to come back empty handed (or empty wombed) from the Mecca of Infertility? 

At first we were in the dreaded “undiagnosed” category. All my tests always came back normal, as did DH’s. The only thing the RE’s ever had as an excuse was my irregular cycles. In my opinion irregular cycles are the easiest treated diagnosis of IF. I know girls who go months without AF, but when they started TTC, one or two rounds of clomid was all that was needed.

After years of being undiagnosed, and uncategorized, we discovered DH’s Balanced Translocation. I don’t know if we were more alarmed at the discovery, or more relieved that we had finally found something! I kept asking the doctors to give me a reason why my treatment didn’t ever work. I have a scientific, logical mind. I can only buy the “bad luck” answer for that much. Not longer than that. Give me a reason, and maybe I can put closure to the questions in my head.

With PGD tested embryos, we figured there was nothing that could stop us from bringing baby home. How wrong we were.

In 2007, when I first got pregnant after IVF#2, I was on baby aspirin for the first few weeks. At about 8 weeks I had an episode of bleeding – major bleeding. Convinced that we had lost the baby, we rushed sobbing to the RE’s office. He checked, and showed us that the baby was doing fine. He showed us the spot in my uterus from where the blood was coming, and he said “Maybe you can stop the baby aspirin now – your blood may be getting too thin”

I stopped the baby aspirin that day, and that was the day the baby’s heartbeat stopped (approximately, because when the missed m/c was discovered 10 days later, the baby had not grown much in size from that emergency u/s day) 

I had a D&C, and the RE ordered a repeat loss panel for me (though it was my first loss – he wanted to make sure we didn’t miss anything)

Then we discovered MTHFR (I call it the mother fucker gene). I should never have stopped that aspirin. And I will never understand why doctors don’t check all this before an IVF procedure! Why can’t these tests be done as part of our pre IVF work up??

The next IVF resulted in a biochemical pg, and the one following that resulted in an ectopic that they could never find. I had another D&C then. And methotrexate to kill the poor embryo that was growing somewhere where it shouldn’t have. We still don’t know where it was. 

Then we went to CCRM for our last and final cycle. During the one day work up, Dr Schoolie said he thought my uterine cavity was tiny, and could be the reason why I was not being able to stay pregnant. He did a surgery on me to fix the shape and grow the size of the cavity. So, in the course of 12 months, I had had 2 D&Cs and one uterus surgery.

The result? Poor uterine lining. Dr Schoolie thinks it’s the D&C’s that “damaged” my lining. I don’t know how he can be sure the surgery did not contribute to the damage. It’s the same process right? Scraping the insides of the uterus?

Last week, after my BFN, right after the nurse from CCRM called with the news, Dr. Schoolie called to say he was “shocked the cycle didn’t work”. Yes, we were shocked too – I was getting BFPs locally, and I got nothing at CCRM!! He also said that given the fact that I have never carried a pregnancy to term before, and the fact that my lining does seem badly “damaged by the D&C’s”, it may make sense to look at surrogacy for the remaining 2 blastocysts we have. He did mention that if I wanted, we could try to prep my lining again. I told him I did not trust my uterus. He then said, “In which case, honestly, you should consider using a gestational carrier”

So from being “undiagnosed” to becoming someone that probably can never carry a pregnancy to term, what a downhill slide huh?

Bottom line – our struggles with TTC and with IF ended up making me even more infertile. Now I am definitely barren. Before this, I could dream and carry a hope in my heart that it will work - someday, somehow. Now I know it won’t.

Trying to conceive made me infertile. Perhaps I just should not have tried so hard?


Meg. said...

Niki *hugs* ~

ALL of this was entirely out of your control. How were you to know that the treatments you thought were helping you were actually harming you? There was no way you could have known! And, from the sounds of it, your doctors were in the dark as well.

I am so *so* sorry that the outcome is what it is. I truly understand the pain of literally being "barren." It's awful. It's unfair. But I try to hold out hope....

Hope that exists in the form of GS. What an amazing medical achievement! At least we are still allowed to dream. At least we still have that one last glimmer of the possibility of our bio babies.

I'm sure it will take you a long time to process all of this new, shocking information (i.e. your treatments damaging your uterus). Take as long as you need to process. I've know that I was "barren" for 10 years now....and I'm still working on full acceptance. It doesn't come easily. But I promise that you will always have my support.

Jill M. said...

2 words... heart wrenching!

I am so sorry my friend. You don't deserve this and I just don't understand why this happens. Sending love...

Shelby said...

Never, ever blame yourself. All of your actions were driven by pure love--pure love of a child you had not even met at that. If you can be faulted for that, then we all can.

I have to say, although I'm sure Schoolie is quite gifted as an RE, like you I have to wonder how much the surgery also contributed. But I'm sure there was no way of knowing this outcome at that time, especially if one of the more gifted REs in the country didn't catch it.

To be honest, when I had my D&C, I was very, very thorough in finding out the risk factors and as far as I remember, this was never mentioned. So without a crystal ball, how could you have known?

I'm so sorry. I'm thinking of you friend and hoping that the next path you step on will be much, much kinder to you.

DAVs said...

Niki--your story is just heartbreaking.
I know that you have hope in the form of a GS and I'm glad for that...if that is indeed what you decide to do. But I know that none of this is what you wanted and the unfairness of it ALL is overwhelming.
Big hugs to you. I so wish I could actually do something to help.

Kate said...

Wow, there's really nothing adequate that I can say, is there? I'm so sorry to hear that you and your RE think that you'd be unable to carry your own baby.
Everything you did was from the best of intentions though, so please don't blame yourself. You really thought that the procedures were necessary and would help (as did your doctors). What an awful situation to be in.

E said...

I'm so very sorry about your losses. Your story is heartbreaking.

That is scary that D&Cs can actually contribute to IF. Boy, they never tell us that do they? I think I have another m/c I will NOT get a D&C.

I'm so sorry. ((hugs))

Anonymous said...

:( i know what you're going through....and it totally sucks, i'm sorry. the tough part is that the D&C stuff is just their best guess at why the uterine lining doesn't thicken up. i suppose it's a pretty good guess....but i always wondered if there was something else that they were totally missing. i hated feeling that my choices about my medical treatment led to my poor lining. but you know what? i honestly think it has to be something else, too.... maybe in a few years we'll read about some new medical discovery or something that will provide us with some understanding. until that time, it sucks. and i'm so sorry that you have had to endure all that you have gone through. i think about you often and hope that one day things will be so much better...


Angie said...

I am so sorry! No words can heal your heart but know that I am here hurting for you...I hope your future path is much brighter and brings a joyous end!!!

Rambler said...

I suppose the other side of the coin is that if you hadn't done everything you have to this point, you would have always wondered if you fell short. If even one iota of a chance was possible, and you should take it.

I think you are so right that having additional tests for something like MTHFR should be conducted. The RE is trying their hardest to get your pregnant, they should be helping you stay pregnant too.

I'm sorry. It's not a fair game or fair rules that you are being asked to play by. It's all just foul.

Wishing 4 One said...

So sorry for this crazy train you rode.... so many of us are on it too and it sucks, its a long ride and seems like we are never going to get off of it. Thinking of you and try to heal your heart Niki, its not easy but it is necessary, even if just a little bit. xoxoxoxoxo

Clio said...

Niki, I don't know quite what to say. You have every right to be upset. All this scraping of the uterus cannot be a good thing, and that if by doing what the doctors, the ones who should have been protecting you, told you to, you ended up messing up the conditions of your womb, it's really, something to be indignant about. It is the saddest outcome for so much dedication.
You have a new path now ahead of you, your grieving huge. You do have the option of the surrogacy if you'd still want to pursue it, and perhaps that can be healing. I hope you can find some sort of emotional healing. You need to concentrate on yourself right now, and vent all the anger and negative emotions, Find ways to express it, to grieve this, so to get it out of you and lighten up your system before you make your decision.
big, big hugs
my thoughts are with you.

Sarang said...

You both have done exactly what you needed to during all this. Please don't judge yourself by saying maybe you tried too hard.

You can always look back and say you did all you could. That's not something that everyone can say.

I'm proud of you for all you've done and for the strength I know you have in you for what's still to come.

Caroline said...


You have been in my thoughts, and I feel terrible that you are suffering so badly at the moment. I don't understand why the TTC journey has been so tough, and you have had so many challenges to overcome. It isn't fair. Hugs to you.

Anonymous said...

oh god, sweetie - my heart is just breaking for you. I wish that there was something more that I could do or say. No matter what path you choose, I will be here to support you.

Have you read Niki's blog at myjourneytomylesandbeyond - on my blogroll - she had many miscarriages and had a son very, very early and he ended up passing away. She is using a GS, who is now pregnant with twins. Niki is sweet and I am sure she would be happy to answer any questions you may have.


Chhandita said...

Hugs Nikki... Just read the posts... Am so sorry that you have to go through this...

Lorraine said...

Wow - you have had such a long strange go of it, one rare complication after another. It just seems so unfair! I absolutely think all IVF patients should be tested for everything before the first cycle, if only to avoid the years of heartbreak, not to mention bolster the success rates of clinics. Maybe the D&Cs do damage the uterus, but the years of failure do more damage to the spirit.

I hope the GS is the answer you've been waiting for - it is truly amazing that the possibility exists!

TABI said...

I am so sorry. I feel also that my ectopics really messed me up inside so I can relate to feeling like getting pregnant made me less fertile. It's so unfair but you can't beat yourself up about your choices and trying hard to conceive. Feel free to ask my anything if you choose to go the surrogacy route. It's been a wonderful experience for me.

Anonymous said...

I'm so sorry Nikki,
you have been through hell and back.
I know it all seems hopeless right now but maybe a GS and those 2 last embryos will do the trick.
I think about u often and check in on your blog all the time. I'm truly sorry that this has happened again to you.
Don't dwell on the past, you had no idea that ttc was going to make you worse. Don't punish yourself for having tried so hard. You followed your heart and dreams of having a bio baby.

banditgirl said...

This fucking sucks. I am feeling really powerless and down about it right now, and I felt every single word of yours. In these times I try to remind myself of Peggy Orenstein's words at the end of her book that she wishes she hadn't spent so much (almost all) of her energy and time on this endeavor. I hope this is not coming across in a way that hurts or upsets you. It's something I tell myself, it's a kind of "fuck you" to the IF monster, that I will not let it destroy me completely and will try to, when I can, live and enjoy my life even now, because these times, days, years will never return, whether I will or won't have a child. Right now I am very bad at this as I am just feeling completely consumed by the IF monster, the M-F.