When enough is enough

You see it a lot in the Recurrent Pregnancy Loss world and even the Infertility world.  People questioning when enough is enough.  I know even I was tempted by the ‘try one more time‘ even after 6 losses mind game as we planned on a FET after losing Abby.  Often times you see the try one more time turn into a try again and again and again.

When do you stop this crazy trying to conceive(TTC) race?  Or the crazy TTC and hope you don’t miscarry again race?  When do you stop trying drug x or drug y thinking that might make it ‘work’ this time?  When do you decide that you’ve seen enough specialists and have had enough labs drawn?  How many miscarriages is enough?

This is such a personal decision- no one else is walking in your shoes or living with your relationship or parenting your child(ren)(if you have any).  No one else can know what recurrent miscarriage or repeated IUI/IVF failures have done to your body, heart and mind.  Other’s experiences may provide you with some lessons learned but ultimately you need to own your own experience.

This hits home when I realize that I’m a ‘quitter’ in the RPL world (and yes, I was called such by someone on a RPL group).  I only had 6 miscarriages and Sally over there has had 11 and she’s still trying or Jill over there has had three children and then 7 miscarriages and they are still trying.  I think many people try to be encouraging- ‘Don’t give up, don’t quit, you can do it, great things come to those who wait, maybe next time your bean will stick!’  Honestly, I’m not a huge encourager.  I have to be realistic with myself, and I tend on the slightly negative side.  I also don’t get how some women can keep doing the exact same thing over and over and over again with the same result don’t see that as insanity.  But that’s their choice- if it doesn’t drive them insane, I really should have no say over it.  I just think that in being encouraging that we should be encouraging people to be making the best decision for them, not just encouraging them to keep trying.  People shouldn’t feel bad or guilty because they say enough is enough.

Then there are the things that just tick me off-

First is when these women say that if you stop TTC anymore that it means you didn’t want it badly enough.  You must not REALLY have wanted that baby if you aren’t trying again.  This really irks me that women who decide to get off the roller coaster of loss have to feel like had they just WANTED it more, they may have ultimately had success.  I guess we’ll never know, will we?  But I do believe, that when it comes down to it- what is in our hearts and minds has NOTHING to do with what biology may or may not do.  At the end of the day, some women will not be able to carry a(nother) baby and doctors may not ever be able to offer an answer.  You can want it till you are blue in the face, but that is a sad reality for some percentage of people.   It’s bad enough to feel like your body failed you and to stop without a(nother) baby, but she shouldn’t also have to have others tell her that she should have wanted it more.

Next is when someone does FINALLY get that pregnancy success and then she decides that she’s going to swoop in and ‘save’ the rest of us from our RPL.  I’m glad for her when I read that she has a healthy pregnancy after several losses.   And I think it’s great if she says what may have worked for her this time (ie, this time she used steroids or progesterone or xyz)– maybe someone else can take that to an appointment with their doctor.  But it irks me to no end when she generalizes that ANYONE who tries another pregnancy without using what worked for her that they are not advocating for themselves enough or they aren’t seeing the ‘right’ specialist or they should just get the drug and try it anyway because its a harmless drug.  Like we are all stupid and just blindly miscarrying without trying ‘enough’ medical intervention.  I’m glad you attribute a baby aspirin or a progesterone pill to your healthy pregnancy.  But don’t presume that everyone will benefit from that or imply that their miscarriage was their ‘fault’ because they weren’t on this drug therapy or because you didn’t push your doctor enough.  Last time I checked, there are no magic bullets to prevent miscarriage.  There are some crazy (untested, uncertain, and sometimes even dangerous to mom or baby) things out there that people are trying and there are still no guarantees.

So I’m trying to be ok with my decisions and experience.  I’m not there yet and I’m not where I want to be, but I won’t feel threatened or disappointed or whatever emotion when other people take different paths. If someone else is done, I respect that she has made that hard decision.  If someone else is trying again, I respect that hard decision.  If someone is moving on to adoption or surrogacy, I respect that hard decision.   And when someone asks the question, ‘How do you know when enough is enough?’, I’ll offer the most thoughtful response I can and remind them that what’s in their heart is most important.  If they don’t know, then maybe they need some more time to figure it out.  But I owe them more than just blindly saying to hang in there and keep trying till they get their rainbow when that may not be what’s in their heart or what’s best for them.  Only they can know.

It’s my body, right?

I called and talked with my OB last week.  I had my RE send her the copy of his report detailing the scar tissue that has now taken over my uterus.  We aren’t currently seeing eye-to-eye on what’s next for me and my body.

What decisions are we allowed to make about our bodies and how do doctors figure out how to ‘do no harm’?  I remember one Grey’s Anatomy episode where a guy hates his foot and he wants the doctors to remove it.  The doctors say that it’s a perfectly healthy foot, so they refuse him.  The guy borrows a chain saw and cuts it off himself so that they are forced to listen to him.

Ok, it’s extreme (and you may be able to convince me that not everything that happened on Grey’s is realistic :)), but I really feel that way about my uterus right now.  I want it gone.  I have had too many babies die in my uterus, too much pain caused by that organ, and I just want it gone.

Is this such a leap to take?  (warning- TMI)  If I don’t do anything, the Asherman’s may significantly affect my cycle, I was already struggling with not having any cycle almost 10 weeks post D&C.   It’s possible the scar tissue holds in the lining that you should shed each month and that can cause endometriosis (or make endometriosis worse in my case since I already have it).  Before these last miscarriages, I had heavy cycles and pain.  I was told it would be at least 2 surgeries to try to remove scar tissue and prevent it from returning- on top of months of estrogen therapy (which isn’t good given the endometriosis and family history of cancer).  Really, how much more do I have to try to work through with this?

If I don’t do anything, I also worry that I will get pregnant again when I don’t intend to do so.  I have gotten pregnant so easily in the past that I don’t trust going without birth control.  Between my unknown cause of Recurrent Pregnancy Loss and the scar tissue that’s clouding my uterine cavity, it’s probably almost a 99% chance I would miscarry.  I don’t want to leave that as an option.  I can’t move on and try to accept my life if that’s still a possibility to miscarry again.  The only reason I can accept never getting pregnant again as ‘ok’ is because it brings the benefit of never miscarrying again.

So I just want a hysterectomy.  I feel like that will give me closure.  I will know with certainty that I can never get pregnant again nor can I miscarry again.  We are already walking the journey of surrogacy.  I just feel like I will be able to heal better mentally and emotionally.  I wouldn’t have to have my ovaries removed, so there wouldn’t be the hormonal effects.

So, when I even broach the topic of preventing pregnancy with my OB, she said would not even consent to tying my tubes yet.  That kind of blew me away.  I know that a hysterectomy is a drastic move, but she won’t even consent to tying my tubes?  She reminded me that I only have one child (um, thanks, like I don’t think about this 2,000 times a day) and I’m still ‘young’.  Ok, I’m getting extremely close to advanced maternal age, so I hardly put myself in the category of young.

So when do I get some choice over what happens in my body?  The really f’ed up thing is that my husband could go into a clinic and schedule a vasectomy tomorrow with great ease.  And I could choose to have multiple surgeries on my uterus if I wanted to remove scar tissue, but I’m not allowed to have surgery to remove it?  Or to make a step in the direction of never getting pregnant again?  I don’t want birth control or an IUD, I hate the hormones and weight gain and I just want to start letting my body heal and move into a new chapter.

I know, most women who have to have a hysterectomy didn’t want one and they had no choice in the matter, so I’m a very odd duck.  Are there lots of people out there who wanted hysterectomies and then regretted them horribly later?  Were they removing a very broken uterus or a functioning one?  Anyone with thoughts on this to help me out?   I don’t know what my next move on this should be- I guess a consult with a different OB/surgeon will have to be next.  And it’s not like I want to do this tomorrow as a knee-jerk reaction or because I’m depressed or not grieving well or whatever.  But I feel like waiting a year or so should be more than enough to say this is not just a quick, bad decision and that at the very least my OB should tie my tubes even if she won’t remove the scarred coffin inside my abdomen.

Surrogacy Battles- Part 1 (the ‘choice’)

We have several frozen embryos left from my second IVF attempt.  When I was pregnant with Abby, I looked at that pile of embryos and actually worried that we had too many.  We didn’t lightly decide to do IVF and I don’t believe in destroying any embryos that are viable/created (personally… I know others feel differently and that’s ok, too).  So I was actually worried about needing to transfer all those embryos for future pregnancies- would I really have to do that many more frozen transfers and possible pregnancies?  (Silly me, look what happens when I worry about things like that)  Then I lost Abby and my uterus’s ability to carry a pregnancy and now I look at that tiny batch of embryos and worry if they will be enough.  Will I have even one child more from that set of embryos?

I think almost every  infertile woman who has a blog has some sort of blog post about adoption.  I would wager every single one of us has heard the ‘why don’t you just adopt?’ question from a friend or family member.  As if it’s the easiest thing in the world to do.  The reality most of us find is that adoption is a very, very difficult path that is full of rules, hoops, and few guarantees.  I looked into adoption for us after our first few miscarriages.  I was shut out immediately by several agencies- we hadn’t been married long enough, we weren’t religious enough, age was a factor, etc.  I was told by others that they had huge waiting lists and were not accepting any new couples at the time.

Biology is not what’s most important to me (in fact, with my family history of cancer and depression and endless other health issues, I wonder sometimes if an egg donor wouldn’t have been a better choice for future children than using my genetic material… but I digress).  Biology does matter to my husband, and I respect his opinion.  So honestly, adoption is just not the best decision for our family.  And we turn to surrogacy.  We have the biology (our embryos) and we have the ‘guarantee’ that no one is allowed to change their mind and parent our child.

I do feel that our embryos that we created should have a chance, I can’t just decide to destroy our little frozen embabies.  It was going to be a chance in my uterus, but now that this is not an option I’m certain that they will have better odds in a gestational carrier’s uterus.  And face it, I feel like I deserve the odds being just a little bit in my favor now, right?

I don’t expect surrogacy to be an easy road.  I don’t know how it will feel having another woman carry my baby.  I have to give up a  ton of control (even more than you give up when you are dealing with infertility and RPL).  I don’t get to feel my baby moving inside me, which was my favorite part of pregnancy.  I don’t get to give birth, which was my second favorite part of pregnancy.  But when I worry about missing those things, I know that what’s important is having the baby and raising the baby.   For me, pregnancy is just a means to accomplish that, nothing more and nothing less.  Maybe I would feel differently if I had never carried a baby to term, I guess it’s just not something I feel I have to do anymore.  I know I don’t watch Sweetie run around like a crazy toddler and immediately think back to being pregnant with her.  I’m not any less of a mother because I didn’t do the pregnancy piece.  So while there will be a small hole of time missed by not carrying my future baby, it’s a sacrifice that makes sense.

I will still get to participate in appointments and ultrasounds (as much as travel allows).  I want to try to induce lactation (and given that I nursed Sweetie for over a year and my milk came in after my 16w loss, it’s highly likely I can do this) so I can hopefully breastfeed my future child.  It won’t be the ‘same’, but honestly, I’m so burnt out on the ‘same’ that this isn’t the worst thing.

I will get some piece of mind and hopefully a little healing.  It feels so relieving to think that the success or failure of a pregnancy will no longer have anything to do with my body.  That alone is worth going through the process of surrogacy.  I think.  (I guess I’ll evaluate when/if we come out on the other end, right?)

No more decisions to make

Decisions that sometimes seem agonizing in the moment become even more so when they are taken away.

I had been torturing myself trying to figure out if we should try a FET, when we should try a FET, if we should transfer one or two, etc.

Well, that decision was taken away from me this morning.

I had a hysteroscopy to look at my uterus and I have developed significant adhesions/scar tissue (Asherman’s Syndrome).   My RE said he could attempt to operate and ‘fix my uterus up a bit’, but that given my history it would be against his better judgment and he’s ‘happy for me’ that we are attempting surrogacy.

Just like that, I’m done.  I’ll never get pregnant again.  I’ll never even have the potential to carry a baby to term.  I won’t get the chance to beat this RPL.  And worse yet, it’s 100% the cause of MY bad decision I made in the hours after I found out my sweet Abby was dead.  I didn’t think I could bear to be induced, so I chose the D&C that did this to me.  The OB said she was using ultrasound and would be extremely cautious given my history.  Guess that didn’t help.

At least when my miscarriages happened, I never felt like they were (really) my fault.  I knew I had done everything I knew how at the time to be taking care of my baby.  And now I’m hit in the gut with this diagnosis and it’s 100% my fault.  I don’t even know what more to say.  I guess that’s what happens when you ask ‘what’s the worst that can happen?’.   It just gets worse.

Back to our regularly scheduled programming

What a week.

I had a nice vacation with my Sweetie.  I also remembered that traveling with a toddler is not very predictable, so I obviously did not get a chance to update over here. 

We finally heard that our agency has a surrogate candidate for us to talk to.  Hopefully we can get that scheduled ASAP (I would have done it today if possible!  Yes, I’m just slightly anxious and eager to keep the ball rolling).  Even a bigger hope is that she will like us.  I can’t even devote enough time here to the anxiety I have about talking to a surrogate.  It’s like internet dating on steroids.  I may have a slightly skewed vision of the current industry of surrogacy, but it seems to me that there are many, many Intended Parents (IP) to every Gestational Surrogate (GS) out there. We are definitely not the ones in demand, so I feel very helpless in this all. I guess I don’t really know how a surrogate chooses who to carry for, and it is just beyond my capability to put myself in her shoes (given my history of being a failure at pregnancy). 

Provera started working, finally.  So, if we want to, the clock is ticking on me deciding about doing a FET.  I say ‘me’ because my dear husband thinks this is just a non-question.  Of course we should try again in my body that has killed multiple normal babies.  Yep, makes total sense. (end sarcasm)  Yes,  we fortunately have a handful of embryos to work with, but by no means do we have unlimited options.  I refuse to do another complete IVF retrieval cycle, so once our frozen embabies are gone, we are done. 

So I need fingers crossed that we make some progress.  Any progress.  Towards a healthy, living baby at the end of 9 months.