Thursday, October 8, 2009

Victims of Infertility

This was my guest post on Poltzie's blog a few weeks ago. It was something I really wanted to write about and even though I posted it over there, I wanted to discuss it here with all of you. Forgive me if you already read it, but I do want to see your comments.

-- I start this story with the history of my IF and what I went through, culminating into the point of this post and a request for feedback. It's so long I wanted to explain it a bit first.

I was diagnosed with "unexplained infertility" when I was trying for my first baby. I had all the initial tests like blood work and the HSG, took OPKs every month, experienced my first lap surgery checking for endo which was diagnosed as mild, had 3 clomid cycles and my husband has a good semen analysis. Everything checked out. Our 18th cycle was supposed to be our first IUI, but I missed the timing to take the meds so it turned into a natural cycle. That natural cycle turned into a BFP cycle, conceiving my first daughter, Ella.

The second round of ttc was when I tried for my second daughter, Allison. At only 5 months postpartum, I already had my cycle back although exclusively breast feeding, and we decided it was time to ttc again. I allowed one more cycle to go through, checking if I was even ovulating by using an OPK, and when that showed positive, we said we'd start trying with the next cycle. We assumed it would take no less than a year, if lucky, so when our daughter was only 6 months old, we pulled the goalie. To our utter shock, which I'm still shocked over, we achieved another BFP. We considered ourselves the luckiest people on the earth. The birth of Allison was traumatic for my uterus, having to undergo some emergency surgery at 5 weeks postpartum for heavy bleeding. We found I had retained placenta and when it was removed during surgery, I lost a massive amount of blood due to a condition called placenta accreta - Allison's placenta grew into and through my uterus. I recovered and we continued life as the parents of two little girls, 16 months apart.

Raising two little girls so close was hard. Harder than we ever expected. So we waited a bit to ttc our last child. It was only a few cycles in when I found I was no longer ovulating, instead growing huge functional cyst. I was diagnosed with LUF syndrome, which is where your body grows follicles, creates the LH surge to signal ovulation but instead of releasing the egg, my body would hold onto it, growing cysts as large as 10cms. I would be sidelined from ttc for another cycle, having to take bcps to allow the cysts to be absorbed. My OB referred me directly to an RE to deal with this problem. To force my body to ovulate, my ovulation would be triggered with HCG and under ultrasound, we would verify ovulation.

I also had another HSG to ensure my tubes were open. This time, my tube was shown as blocked. The RE ordered another test, the HSS, which saline was pushed into my uterus to check for scar tissue. It was discovered my uterus was over 70% sealed shut with scar tissue. This prompted 3 consecutive uterine surgeries to clear it all out. It was a vicious circle because surgery tended to create more scar tissue, so my RE placed a balloon inside my uterus to hold it open during healing. It was not fun. After my 3rd surgery (4th total), I was given a clean bill of uterine health and we tried our 3rd IUI cycle, but it failed.

IVF was our next step. Our 18th cycle was the IVF cycle and we made 9 embryos. The transfer was cancelled due to poor lining response, which is a side effect from my uterine walls being scraped clean of scar tissue so much. During cycle 19, we tried to get my uterine lining to respond with estrogen, which didn't work and transfer was cancelled. Cycle 20 was our second attempt at FET and we went crazy with trying to get my lining to respond. We threw everything at my uterus - injectable estrogen, viagra (yes, viagra), estrogen suppositories, meds meds and more meds, yet my lining only got to a 7 (they want 9mm at minimum). My RE wanted to cancel me but I said no, telling him I had to finish a cycle for my own well being. If it didn't work, I would go through another IVF, but I just HAD to complete a cycle.

We thawed all of the 9 embryos, 7 survived and 4 were grade As and Bs. The last three were grades C and D and arrested before they grew anymore. We transferred the Fab Four embryos and I was given a 40% chance at pregnancy. Of that 40%, I was given an 85% chance for a singleton, 10% for twins, 4% for triplets and less than a 1% for quads. And remember, this was less than 1% ~of~ 40%, so not much chance there. At 10d3dt, I was testing BFNs and was getting myself mentally prepared for IVF#2. Except at 11dp3dt, I testing BFP with a beta of only 15. The nurses told me to prepare myself for my pregnancy to end. But my betas were doubling. At 15dp3dt, my beta was 213 and an ultrasound was given to look for an ectopic pregnancy. It was too early to see anything but my lining looked thicker in one spot, which could be good news. At 19dp3dt, my beta rose to 1,073 and my RE called me to immediately come in for an ultrasound. They were afraid of ectopic pregnancy and needed to take a look to see what was going on inside me. Except instead of something in my tube, we found a baby in my uterus. Karl was born on January 10th.

Which all brings me to my point, but I first wanted to show you what I went through to get my 3 children. All said and done, I went through 4 surgeries, 3 HSGs, 4 HSSs, 3 IUIs, 1 IVF, 1 FET, ~24 medicated cycles and 39 cycles total. Was I "infertile"? Was I "subfertile"? Based upon the definitions, I was. Do I consider myself blessed? Hell yes.

I've received countless numbers of comments from anonymous readers (like anyone would admit to these terrible comments) of my blog pretty much condemning me for calling myself infertile. Although I should simply ignore these comments, they hurt. They hurt because I went through a lot for my children and I don't think succeeding should erase the war I fought. It's not the pain olympics and I would never try to compare who has it worse, but I do know that to me, I paid my dues.

Consider this ... If a woman had breast cancer and beat it by having her breasts surgically removed, would she still be able to call herself a victim of cancer? Of course she would be. So why would it be any different for a woman who suffered and beat infertility? Just because you won doesn't mean you didn't fight the war.

Have you been a victim of hurtful comments about your infertility? Do you know anyone who has? Please share your experiences!

22 comments:

chicklet said...

One of the worst ones I received was indirectly through a friend, who said her "husband" didn't understand why I couldn't just "get over" the fact that I couldn't have kids and move on. Like it was something I could just flick a switch on or off.

This came from a guy who knocked up his wife on the FIRST TRY with both their kids.

Kristin said...

Having kids does not negate infertility or the desire for more kids. People who think that are the same ones who don't think secondary infertility is as bad.

Luckily, I never got any really hurtful comments about my secondary infertility. I did, however, get some thoughtless comments. One person looked at me after our fourth loss (second in a row) and said, "I just don't understand why you are so desperate to have another kid." Then there was someone who told me "You just get too invested too soon." Well, excuse me but what the hell am I suppose to do...not give a shit until I'm in my 3rd trimester.

DenverNanny said...

I'm brand new to this whole scary world, so I've only spoken to my mom, my sister, and a close friend about it.

My friend conceived while on the 3 month depo provera shot. She told me I just needed to find a random rich guy to marry, have him pay for IVF, and then divorce him. She was serious. For a number of reasons including that statement, she's no longer a close friend...

My sister conceived via injectibles/IUI so she's somewhat understanding, but when I called her with my AMH results (really the first "proof" that something was going on), she asked "Well, are you ok not having biological kids?" Well, NO! Not at this point anyway... but if I was ok with it then I prob wouldn't be calling you stressing out about my results...

My mom had 7 children in 12 years, 3 were conceived while on bcps. She's convinced I'm seeing a bad doctor who justs wants to make a profit, and there's nothing wrong what. so. ever. Thanks for the support mom!

So yeah, just now trying to work through these emotions and after those 3 experiences, it seems as though I should avoid talking about the whole thing.

WiseGuy said...

Whoa...I was not aware that you had been brickbatted like that...

No, I have never been targetted like that, and maybe what keeps them off is my failure to show even one Unicorn for the whole circus I have spun.

Kate said...

in my experience, having kids, or even beign able to concieve, doesn not make you a blissful "Fertile". while some may not agree, recurrent miscarriage IS (in the medical world & in my opinion)a form of infertility. i cannot describe the pain of losing child after child, with no answers and no explanation, & having to listen to idiots who have the nerve to say things like "well at least you can get pregnant." it hurts. it hurts bad. & although now i can look at my beautiful baby boys & feel joy and gratitude, the pain of our past losses never goes away.

mommybird said...

Not about infertility because I have not experienced that first hand but with pregnancy loss people have been very insensitive. I lost Layla's twin early in the pregnancy and we barely were able to hang on to her. I got a lot of insensitive comments including "at least you got one out of the deal" "it doesn't really count as a loss because one held on" "you didn't even know the sex of the baby so it doesn't really count as a loss" As if one child can replace another, or that I wasn't entirely in love with the other baby even before the gender could be determined. Once I see that positive sign on the test, I'm attached 100%.

You worked your butt off to have 3 kids and now that you're done that suffering just doesn't count? It doesn't make any sense to me, you suffered, you get the credit for that suffering even if the end outcome was positive. I think you stand as a source of hope to those who have not yet acheived their goals yet. I would look at your 3 children and the road you took to get them and think at least there is a hope that this can happen for me too.

Sarah R said...

You are definitely a victim of infertility and I cannot imagine going through all that you did (nor would my husband go through any of the measures)...I remember all those failed cycles and the pain and heartbreak you had to endure.

I am glad you are where you are at now, but no--it doesn't take away what you had to go through to get there. (((hugs)))

Hollie said...

PPs story about losing a twin also applies to me. I got some harsh comments about that while I was still grieving a loss that in my heart, was a child that should have been born. Like, "Thank God you aren't having twins!"

I do think that having a healthy pregnancy and a healthy baby boy lessened the loss a little bit. But it was still a loss.

I feel that wanting a sibling for your child and having a hard time conceiving would be a terrible heartached to endure. Maybe some people don't mean to be insensitive, they just don't understand.

Poltzie said...

Thanks again for posting it!

I've never personally dealt with IF so maybe it's different if I had but I cannot understand why anyone would but upset about you saying that you were (are?) infertile. It just does not make sense? How could someone go through all of the surgeries and treatments that you have gone through without actually being infertile? How then do you become infertile, if you aren't considered infertile?

You can have a disease (sorry, that isn't the right word but I'm not sure what else to use) and beat it. Just like you can have IF and still have children!

I think that generally ignorance breeds hatred. I also think that often people just say stupid things because they don't know any better.

I remember before I ever met you or knew anything about IF, I met a woman at a Christmas party who told me she had been trying for three years. I still cringe when I think about how I told her that I heard taking a break often worked. What an idiot I was!!! I'm glad she didn't slap me but I wish she would have educated me a bit about what a horrible statement that was.

It's the same as my friend who had a miscarage. I told her about the one I had after I had Chicken. Her response "well at least you have a kid". Wow, that hurt! Like my pain was any less.

Ok, enough about me. I'm sorry you had to deal with all of it and I'm sorry that uneducated people made you feel bad!

Tabatha said...

Nancy, I have been a follower for a long time. I can't remember if I commented before or not but I felt compelled to coment now. I to was a member of the infertility treatment board on webmd. I have a son born 3/21/08 and we are trying desperatly to conceive #2. Not many people know about this but someone who does actually said to me after I told her I have been back to the RE and doing Injections for a while now, "I don't get it, you have a son, how are you actually considering yourself infertile?" I was floored. This came from a person who new the journey I went through to have Tristan. It was emotionally and physically hard and my betas and progesterone were so low that my doctors told me that they coudn't believe I was able to keep the pregnancy. Everything I went through to have my son and just because I DID conceive him she thinks my infertility journey should be null and void. That comment hurt me like hell. I wish I hadn't done it now, but I felt like I had to explain my infertility (PCOS) and the fact that I go through 4 u/s a month and at least 3 rounds of blood work a month on top of Metformin that makes me feel like I have the stomach flu EVERY single damn day since April, oral meds, and injections in my stomach. She never even said sorry. I just wanted to let you know that I feel your pain. I try to remember as hard as I can that people who don't deal with infertility, have no idea what it is about and how hard it is. And the fact that it is basically with you forever. So when you have these bad days and deal with inconsiderate people just remember they don't realize how ignorant they are. Much love to you Nancy! I love reading your blog! (Please excuse any spelling errors. My keyboard is doing funky things these days. Not that I don't mispell on my own!)

jenn said...

I have been very fortunate in the insensitive comments area- I think the worst I ever got was- 'you could always adopt' by a very well-meaning friend who was really just trying anything to comfort me after a particularly brutal cycle letdown. It was said out of love- not hatred/anger/ignorance, but I think it still shows how little the average person ~not~ dealing with IF really knows about it.
Even though I have reached the prize- does that mean that I'm not infertile? By all medical definitions I am. Unexplained & able to conceive with clomid/acupuncture/iui/miracle, but still- those 19 cycles of failure didn't go away. And who knows if this was primary only or if I am in store for secondary as well.
I think you said it perfectly that cancer victims are not stripped of the title when they go into remission- treating IF is still a murky imperfect science- but that doesn't make the condition any less real.

areyoukiddingme said...

My mom was the only one who said anything really offensive, but that's to be expected of her. Plus it was before we realized we had issues, and miscarriage wasn't just a fluke occurrence.

Having children doesn't make you less infertile. You win the infertility lottery when they can figure out what the problem is and how to fix it. And once the fix is figured out, you're simply infertile with a protocol. But there's no guarantee that the problem will remain the same or that the protocol will work twice in a row. Nancy, you're living proof that a body will find new and different ways to mess with you.

Caitlin said...

Nancy, I first want to thank you for sharing your story. You've definitely been through a lot and I bet it's even painful to recount.

I am fortunate enough to not have had any hurtful comments about considering myself infertile. I think the only comment that sticks in my mind is from my mother. she likes to remind me that having children isn't as important as my health and I shouldn't try so hard. My mom has never really wanted to be a grandmother...

Jennifer said...

People say the meanest things!!

I haven't had to deal with infertility (thankfully), but this was said to someone I know. Someone told her that God must not want her to have a baby otherwise she'd have gotten pregnant.

You did suffer infertility(imo)!! You did manage to get very lucky with number to, but you were/are infertile.

I probably shouldn't post this one one since it's not about infertility, but our secretary told a coworker while she was pregnant and sick with morning sickness that "she was a daughter of God and that if she was living her life the way she should she wouldn't be sick."

Robin said...

You ~totally~ are an infertile. What kind of jerk would say otherwise? From what I have read you have been through hell to have your kids. All worth it now of course.

I haven't had too many insensitive comments yet but not many people know that we are ttc. I think they think we aren't because of Alli's special needs. I think she sort of shields us from people asking or commenting. The only stuff I do get that annoys me from those who do know is the old "just relax" speech. I hate that one.

Io said...

People are rude bitches, even people I love. I've been given a lecture about why i was selfish for not adopting, told by my mother I should just use my brother in laws sperm and get over it (ha! turns out he got tested and has the same thing as Al!), and all that jazz.

Tanya said...

You need help... you're infertile... There is no way that I'd consider that number of tests and surgeries part of the "normal" process of getting pregnant.

Yes, you're fortunate that you managed to have 3 children but that doesn't change what you went through to have them.

'Murgdan' said...

People suck sometimes. Rude commenters (who are less than people) also suck sometimes. I was recently told my blog really 'pissed' a bitch off because how could I have claimed to have been so sad or felt so 'left behind' when I only had one failed cycle. Essentially I didn't deserve my pain...because I hadn't been through what someone else had been through. Why, after saying that, anyone would bother to say 'congratulations' I never understood. That bitch commentor can shove her congrats up her pie hole. And that's all. I'm just sayin'.

JamieD said...

I've never had a really hurtful anonymous comment but I think the most hurtful thing said to me was by a good friend. Isn't that how is always is? When you just want someone to hug you and say their sorry, you get some well meaning but not thought through very well comment.

This friend is very religious and she told me I was causing my miscarriages because I didn't believe in God's work and my disbelief allowed the devil into my life. That is how I took it anyway.

Thanks for this post. Sometimes I feel like an infertility 'fraud' because I didn't go through that many treatments - just meds. But every time we would get ready to step it up, I would get pregnant, then miscarry, then start the whole damn cycle over again. I may have my baby now, but it took over three years and a lot of heartache to get here.

MrsSpock said...

I just can't understand how someone can see how many surgeries you've been through,along with IVF, and not think you're infertile.

Just like you, I had a spontaneous pregnancy on a rest cycle, and conceived after 20 months. I'd been through about 5 treatment cycles, and was getting ready to start follistim. We just hit that lucky 3-4% of unexplained infertiles who conceive on their own. It doesn't mean it will happen that way next time- but I hope it does. I still don't want anyone pumping sunshine up my ass and saying it will, however.

Anonymous said...

"just relax" "you're still young"
"you have plenty of time" "quitting thinking about it" "stop trying so hard" "what are you waiting for" " you're not getting any younger" " when the time is right, it will happen" "it's god's will" "you ain't PG yet" "what's wrong with you" " you can always adopt" " how about a surrogate"

I HAVE HEARD THEM ALL... from so- called friends, family, coworkers... and sometimes people i just met at a party or get together.... IT SUCKS.... i'm 35 and i have been TTC for 12 years.... i don't even go to functions anymore.... not when teen and young adult family members are getting PG on BC or first time out of the gate... 3 or 4 just this past year.... IT MAKES ME SICK!!!!!!!!!!!!!

Geochick said...

You went through hell and back to have your children and I think you are absolutely within your rights to describe yourself as infertile. I hate it when women try to be "more infertile" than another woman. It's not a competition! Personally I haven't had comments directed at me but if I ever get pregnant on my own, I'm sure I'll hear something stupid.