Tuesday, September 30, 2008

What is Infertility?

I posted this on my "pregnancy after infertility" (PAIF) message board and got great responses. So I thought I would also pose that question here. Except I need to make it a little more broad, as I'm not asking a specific group this time.

My original question was really focused on those who have graduated from the ttc world and declared themselves pregnant "after infertility". There are so many different stories on our board, I was interested in each person's own definition.

What if you experienced IF with your first and you got pregnant 'easily' with your second? Are you still PAIF?

What if you had an issue which wouldn't allow you to become pregnant on your own (ie: annovulatory or lack of tubes) and you got pregnant in just a few months with a few treatments? Are you still PAIF?

What if it wasn't a year, you had a few failed treatments and then got pregnant on a 'natural' cycle? Are you still PAIF?

Those are the blurry spots for the classic definition of infertility. And for whomever is answering that question for themselves, I will accept it whole heartedly. Infertility is such a personal journey.

Some things were brought up that I wasn't going to focus on. The levels of infertility. But I don't really want to start comparing who has it worse. How could anyone begin to judge that? What if I had a child and then had 5 failed IVFs for #2? Would I be "more" infertile than someone who was ttc#1 and had 2 failed IVFs? What if I was someone who didn't have tubes and failed my very first IVF which was only my first ever month ttc? Would I be "less" infertile than someone who had been trying naturally for 12 months without success? What about someone with multiple miscarriages? Are they more fertile than someone who didn't get a positive in the same amount of time? I just don't think these are questions that could ever be answered.

For those ttc#1, what is the definition of IF to you?

Are you infertile only if you fall into the "ttc for 12 months without a successful pregnancy"?

What about if you don't ovulate or have tubes or some other issue, even MF? Are you deemed "infertile" off the bat? Or does there need to be a few failed medically intervening tries before you get the fabulous title of "infertile"?

There is obviously no right or wrong answers here. I was just super impressed with the caliber of answers I got on the PAIF board, I wanted to expand it here. I'll put my answer in the comments.


nancy said...

When I was ttc#1, we were deemed "unexplained" after we went to the RE at the 12 month mark. The only 'treatments' I had were a few months of clomid which ended in BFNs. On our TAB cycle (#18) before our first IUI, we conceived. I considered myself "Pregnant After Infertility".

When ttc#2, I conceived on our first try. I considered myself extremely fucking lucky, but I didn't consider myself "PAIF". Technically, it was still after infertility with my first, but I didn't go to the PAIF board with my second because I didn't go through the trauma that is IF with #2.

When TTC#3, I learned of problems early. Within the first 4 months, we found I was suffering from LUF syndrome (I made follies, but instead of releasing the eggs, they grew into giant cysts) and discovered my uterus was over 70% sealed shut with scar tissue. For the LUF, I needed to be artifically triggered to ovulate and for the scar tissue, I had to endure 4 painful surgeries. It took over a year to straighten all that out, but even if it hadn't, I'd of considered myself "infertile" once again. Then, going through so many IUIs, an IVF and FET, that cemented my place on PAIF for this pregnancy.

I will admit I once thought if you didn't try for 12 months, you weren't actually infertile. Even if you had an issue like annovulation. I still thought you needed to TRY with medication for 12 months before you could grasp that title. I'll also admit when I saw someone have a failed IVF on their very first "try" ever, well, I didn't feel "as bad" as I did for someone who tried for over a year, only to have a failed IVF then. My opinion has since changed though. With all my "waiting" cycles for surgeries and healing time, I found out how much those 'no chance' cycles really hurt. Think of Io, you think that if her first IVF cycle fails I wouldn't be devestated for her because, after all, it was only her FIRST try. Yeah, fuck that. It totally counts.

Jen said...

I got pregnant after a year of trying and 3 medicated cycles, 2 of which included IUIs. So am I PAIF? I don't really refer to myself that way, because to me I haven't gone through what so many other gals have. Sure I had obstacles, but it was easily diagnosed and treated. I had just enough exposure to IF to really understand just how lucky I was.

Io said...

I, as an individual, am probably not infertile (I think/hope/pray).
I ovulate like clockwork, so bitching about stuff when other women are without eggs or a uterus or something sometimes feels asinine.
But I can't get pregnant by my husband without IVF/ICSI. So *we* are infertile. *He* is infertile. but am *I* infertile? I don't know.

I don't know about secondary...that gets complicated.

jenn said...

I was honestly just starting to consider myself infertile after 19 cycles of trying naturally, HSS, HSG, initial consult & beginning labs with the RE, then cycle #20 & our one clomid challenge + iui miracle cycle. But do I consider myself PAIF? Not truly.
I can understand & sympathesize & empathize to an extent with those that are, but I think I was on the cusp. I was facing down being 'unexplained' & coming to terms with it, but didn't really have time for it to become an integral part of me. Just enough to know how truly blessed we are.
Don't get me wrong though- 20 months still fucking sucks, but all my bits & pieces work & so do his, & we only needed one treatment cycle. I would still consider someone in my exact shoes as dealing with IF. If that answers it at all!

Sara said...

Great question. I used to have a different idea of infertility. To tell you the truth, I wasn't sure what true infertility was until I started reading WebMD and see you and many other women struggle to have a baby. It broke my heart.

As for what I consider infertility, I think - to me - it means that there is some medical issue that is preventing pregnancy. However, I know that there are women who have no apparent medical issue and they are still unable to get pregnant.
It is such an emotional topic.

I have not had trouble in the past getting pregnant, and I hope that I don't this time either. But my heart goes out to women who do.

hkleineweber said...

I didn't consider myself infertile. It did take us 23m to conceive our 1st. I was waiting for our 2yr anniversary of ttc before talking to our doc. I consider myself extremely lucky to not have to endure painful treatments. The only thing that pissed me off was the people who had kids already constantly on our assess to have kids, we never told anyone our struggle, maybe we should have.
Our 2nd took only 5m, I did speak to my OB during those 5m and he wanted to wait until we had been trying 6m before he would run any test.
I guess I see IF as those who have had the testing and were going through treatments.

Simply AnonyMom said...

With my first husband, we were trying for 8 years and never got pregnant. We tried "naturaly" for 6 years, then after 6 years we went to an RE and we both were deemed fine. "Unexplained" infertility. We were on different meds on and off for a year then we went through 6 IUI's (4 with donor semen) and still nothing.

Our IF was a major part of our divirce.

I considered myself "infertile" but then got PG too quickly with my 2nd husband that I stopped calling myself that and instead say I was simply with the wrong person before.

Cate said...

I considered myself PAIF with Lex because I tried on my own for 3 1/2 years before asking for medical intervention and even then it was still another year before I concieved and it stuck.

When we agree to ttc #2 I will begin the infertile phase again. I ovulate so rarely that Lex was the 5% chance of me getting pregnant on my own that my doctor gave me. Other than the first six weeks after Lex's birth I haven't used birth control and it's been a year... We'll see if I'm luckier this time or if my fertility impairment brings me down again.

MrsSpock said...

Mt story is similar to your first child, Nancy.

After a year with no luck, we started getting testing. I ovulate supposedly- though my day 21 progesterone was mildly mediocre, my husband has A-OK sperm, HSG was clear, arcuate uterus- but that shouldn't affect anything, 4 plain Clomid cycles, 1 Clomid IUI, and then during cycle #20, the rest cycle before my follistim IUI, I became pregnant. Officially, we were unexplained, and the RE said the research showed a 3-4% cycle fecundity rate with that.

I consider myself PAIF.

I can honestly say that I cried every day from the 10th month of failure to the day of my BFP. I left my job as an L & D nurse after 3 months, because I couldn't bear it. We went to an adoption seminar. I am still distrustful and angry with my body. Watching my friends getting PG with child #2 now is still a punch to the gut. Could it have been worse? Yep. Could it be worse in the future? Yep. Could it be easier next time? Yep as well. That's the trouble with the "who the hell knows" diagnosis.

I think the "12 months ttc with nothing to show" is too narrow. Like you said, some folks already know they will have issues, like from a long history of endo or PCOS, or, like a friend of mine, who had cancer in the past. Getting pregnant easily, but having miscarriages counts too.

Anonymous said...

I have no tubes and can only get pregnant through IVF or FET. "I" consider myself more infertile then someone who tried on their own for a year, did 1 or 2 IUI's, and then got pregnant. "I" don't consider a 2nd pregnancy (after IF the first time) that is an "oops" to be an IF pregnancy. If you are in this situation "I" don't feel like you belong on the PAIF board. You have then envied "oops" I say soldier on and go to the "regular" pg boards.

Anonymous said...

I'm like Lo. I've never missed a period as long as I've been a "woman" and since we've been seeing an RE I've ovulated every cycle. We had MFIF and even though the fertility issue is on his side of things, WE are infertile and WHEN we get pregnant(notice I said when) I will most certainly be on PAIF. After all it's my body that's being pumped full of hormones and my coochie that gets poked and proded. It'll all be worth it in the end!

Anonymous said...

I was diagnosed with Unexplained Secondary IF. Ive seen 2 OBS, and now an RE. I had 2 miscarraiges before I had my son. I was young and got prego by accident. Little did I know that I would face worse issues later. But I knew that I would have some problem because I had only taken birth control like 1 or 2 times in my life and lord knows I wasnt careful like I needed to be and I went from 1998 till 2001 and didnt get prego. I was with one of my exes for over a year with no protection and I never got prego or even had a scare. Then I met DH in 2000 and we were together for a year to the day that I found out I was prego with DS. I had DS in 2001 I wasnt able to get prego again until 2003, had a m/c, then couldnt get prego again till 2006 with 50mg of clomid, had a m.c with this one too. Then didnt get prego again till 2008 out of the blue with no meds or anything and m/c again. Then I had my LAP surgery on 9-9 and Im now waiting to go back on Femara and TTC again. So I have had 5 losses and have 1 son. I do think that I am in the IF catagory but Im sure that I will be more on the PAL (pregnant after loss) board since that seems to be more of an issue for me. I can get prego but it takes a long ass time. And then when I do get prego it doesnt stick :( I hope all of that changes soon.

I wouldnt say that one womans journey is any better/worse then the next either I mean its all a big huge pain in the ass to deal with. But I also dont think that someone who has tried to get prego for 4 or 5 mths with no issues at all can say they are infertile. I think that it just may not have happened for them yet. Thats one of my biggest pet peeves is to see someone who is just starting out bitching that they arent prego yet. Well shit Ive been trying to get baby # 2 for 5 1/2 yrs now and you dont hear me moaning and complaining.

Ive spent $1000s on medical stuff to try and find the cause. Ive had all the blood work and tests that there are avaliable for IF. I even had the DNA testing. All have come back normal, Ive had an HSG 2 times, I had the LAP, DH has had the S/A, we have done it all and still no answer. Ive been told that there is no reason why I shouldnt be concieving and having a baby.

One thing I have learned is that no news is good news. So if all of your tests are coming back ok and they cant find anything wrong with you then that is kinda a good thing because you know that there isnt any issues it just isnt happening. In a way I consider myself lucky in that aspect that I dont have a cause like blocked tubes, or bad ovaries or something. I just dont O like I should. Even after 8 rounds of clomid and 2 rouns of Femara I still didnt end up KU. So dont ever give up hope no matter how bleak the journey looks, there is a light at the end of the tunnel you just have to keep searching for it. Sorry this is a book :)

Not in the Water said...

Infertility by a doctor's definition is unable to conceive after 12 months naturally (less as you age.) and/or without ART.

Def by a TTCer/IFer...it is something that is a challenge to us to get PG and can get us really down if we let it. And sometimes it's so evil we can't help but let it get us down.

Some can defeat this evil easily and some can't...but it is still infertility.

Anyone that struggled to get PG (and if it's natural and took at least 1 year) is an IFer to me.

So hopefully I am PAIF NOW!

Geohde said...

It's the old 'pain olympics' standard.

I say you can't compare- if someone feels they were infertile and went through the emotions that entails, then they were/are.


BethH6703 said...

I think "infertility" comes with some type of medical intervention (or need for it).

If you were diagnosed with endo (or pcos, or or or) before even attempting ttc, then I think you can claim the title (do any of us really WANT it though?).

Trying for 18 months, but not going to the doc (even a gyno)? Quite possibly infertile, BUT not wanting to face that as a reality. No title for you! (strong opinion? yup... but you know me!)

For me, taking the TTC out of your bedroom and in to ANYONE's office (gyno, RE, whatever) changes the game entirely. Even if you ARE one of those miracles that gets pg on a TAB cycle, you still added someone else's agenda into your family planning.

For me, THAT is the line that has to be crossed...

calliope said...

After 13 failed IUI's with 4 different sperm donors I was given the fancy "unexplained infertility" diagnosis. I was ovulating, I had clear tubes, I had a short luteal phase- but it was being treated...nothing was working and I was told IVF would be my only hope.

I finally got a lasting + after 1 canceled IVF cycle, one IVF cycle that didn't have doubling betas and an FET.

I consider myself pregnant after infertility because the infertility was over 3 years of my life. It was hell. It has forever ruined me. I think I will always have the emotional scar and even though I am so effing happy to be on this side of things, those 3 years are still with me.

Tricia said...

I honestly think that once you make that trip to the RE and you start treatments, any treatments.. you are dealing with infertility.

Marie said...

If you struggle with building a family. Experiance the longing of having and child but lack the physical ability in any way, then ,to me, you are infertile.

The degree of pain is different but a burn is a burn.

(I don't think I used my commas right :()

Tara said...

It took me 3 years and $20,000 to get pregnant.

I am PAIF.

Anonymous said...

Hi Nancy! I saw this post while lurking PAIF & am happy to see you have it here too. I think we all know the "medical definition" of IF- TTC on your own for 12 months (6 if over 35) with no success.

I do think though that there are those who are considered IF before they even start TTC. For example, those who already know that they have PCOS, Endo, missing tubes/ovaries, past cancer treatments, etc. So, I think that IF is defined any thime that you NEED medical intervention in order to get & stay pg.

I, for one, have had blood sugars problems my whole life & also had 2 m/c before we started TTC. So, I was hopeful that "if I really tried" everything would be ok. WRONG! It's been almost 3yrs. I still need to go figure out what's wrong, but I was in denial for a long time, then we moved 7 states.

So, all I've had done so far is a u/s that confirmed that I have cysts. Don't know why or how to treat. I will try the "easier" dxs first & count myself very fortunate if I don't have to do more.

But DH & I have still dealt with the emotional effects of this. Those 3yrs (so far) count. So do my previous m/cs. We have also discussed our limit w/treatments & decided that there's only so far that we will go.

I think of IF more like cancer, you may or may not overcome it, but it's always part of who you are. Yes, there are degrees, skin cancer is not the same as Luekemia, but it still alters you & your outlook on the world.

~Steph (my_teffie from WebMD)

tammy said...

Well, let's see...

DH and I have been trying for 6 years. Even if we were not trying we would both earn the title of "infertile" based on his sperm issues and my PCOs. Biology is not on our side.

I knew in my heart before the journey began I was an infertile.

I think it is not only a dx and treatment but a mindset and a feeling. Because of that, I would still feel like we are IF even if a second child was an "oops" or even a first child.

Anonymous said...

I agree with one poster that if there is a medical reason (like PCOS, endo) for difficulty ttc, that you get to claim the title. I know that I felt "infertile" even before we started ttc because my cycles had always been long and irregular. I knew that I wasn't going to get pregnant without medical intervention, even if it was just taking Clomid. Even though we started with the Clomid before a year of ttc, after 3 cycles of 70+ days, I figured why waste time? My PCOS wasn't magically going to go away. I needed help to get pregnant, and to me, that made me infertile.


Misty said...

Well I guess after reading your post I consider myself infertile. LOL Here's my history: 5 m/c's, 3 C's Clomid, 1 IUI, 3 C's Femara w/ Injects (Follistim, Repronex), some C w/ HCG trigger where I didn't O but formed cysts. If I ever have a *successful* PG I am def going to PAIF. After starting to see my RE in Jan. 2008, he discovered many issues that were unknown until then FVL, MTHFR (both DH & I), Ovulation dysfunction, poor endometrium quality and MFIF. After learning DH's ABO type, we now have RH factor issues to worry about once we get PG. Sheesh At this point I am seriously doubting if I will ever have a successful PG where I get I bring home a baby.

Misty said...

Oops I totally forgot about having Endo too. That also was playing a big role in my IF battle. Had a lap/hysterscopic Procedure July 2007 to remove the Endo from the front and back of my uterus and bladder. Also have had multiple biopsies and a colposcopy due to an abnormal pap in the REs Office.

Matthew M. F. Miller said...

Just because you get pregnant doesn't mean you're no longer infertile. Anybody who has battled a major event, addiction or illness in life shouldn't forget about the past because it has become part of who they are. And to deny that is, in my opinion, disrespectful to those who come after you who deal with the same issues.

When you focus so much of your life and energy on "getting well" you are forever changed.

Penny said...

Sometimes I feel less of an infertile because it "only" took me a year and a half of TTC for #2. But the entire time, it was medically assisted. So if most folks start "naturally" for about a year, than is my adjusted IF timeline 2.5 years?

I think anyone reaches the Infertile label as soon as they start with medical interventions, no matter how early or for what cause.