Sometimes, It’s Complicated

Photo copyrighted by Single Infertile Female

Single Infertile Female recently published a post which has generated a tremendous discussion and even personal fallout.

If you are unfamiliar with S.I.F., she’s a beautiful person (on the inside and outside) whose writing is always honest, sincere and from her heart.

Recently she posted about why pursuing IVF again is not for her, at least at this present time. She brings up the scary bugaboos of birth defects (specifically linked to progesterone) and generally worries about all sorts of things related to the science. If you are feeling raw or worried about your pregnancy, I would probably NOT recommend reading it.

Those fears lurk silently in the back of my brain. When I pursued IVF, I was informed of three risks: premature births, ovarian cancer (which science has not entirely proven: those who pursue fertility treatments already have ovarian problems and might be more susceptible to ovarian cancer) and multiple births.

I didn’t know of the risks linked to the prometrium I took, although there’a probably some paperwork somewhere that delineated them. My doctor was very transparent about everything.

I made peace with those risks and I had a lucky, lucky experience my third time around.

I know that many others did not.

Obviously, the scariest risks are those we don’t know about. We have no long-term studies about progesterone yet. The oldest IVF child is only in her 30s.

Here’s the thing: I think discussion and difference of opinion in our community is right. Healthy, as long as the discussion doesn’t tear us apart. I think S.I.F brings up valid concerns. In my mind, support is not just mindless nodding of heads about everything I say. My favorite bloggers often take me to task for things I do and say. Support is often trying to help someone figure things out. Gently. So I do not think S.I.F. should be ostracized for her post.

Obviously, we all run into the wrong kinds of reactions in the outside world, and I don’t want to bring that kind of energy into our community either.

Clearly, it’s complicated.

What does support in the ALI community look like in your mind?

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14 Comments

Filed under Infertility

14 responses to “Sometimes, It’s Complicated

  1. Mel

    Support looks like saying something when you can and stepping back when you can’t. I read some posts like a therapist, holding my face expressionless and letting them know I heard without stating anything more than that. Because sometimes I think people just need to know that they’ve been heard. They don’t need their mind changed or their problem solved or even their thoughts agreed with. They just need to know they’ve been heard; that their words met someone’s ears.

  2. Wow- thank you for linking her blog. That was a great post- honest, respectful and eye opening. I will most likely have to do IVF with embryo selection (because of my son’s genetic disease) if we want any more biological children, and this definitely gave me a lot to consider. I think this girl deserves and has earned as much support as someone who is choosing to do IVF.

  3. I guess I am on the flip side of the coin because I believe that a post like this can cause unnecessary fear to women undergoing IVF. If you have ever read my blog you will know that in this pregnancy (twins via IVF) I am being VERY vigilant about what I put in and even on my body. Pregnancy after loss is just a very different experience and one that changes views drastically.
    The fact is that millions of babies have been born to mothers who underwent IVF (and progesterone use). The issue I take wit this author is that she only has half the story.. synthetic progesterone is what was linked (in the 70’s) to birth defects- the progesterone therapy RE’s prescribe as follow up to IVF is natural progesterone therapy- not synthetic. Below I have attached the wording on this issue from my own fertility center’s literature:

    “We currently recommend progesterone therapy in early pregnancy for women who have deficient progesterone production during the latter part of their menstrual cycle, or who have been given medications to induce ovulation for In Vitro Fertilization. The natural progesterone compounds used for this therapy are either identical or very similar to the natural hormone. You may be concerned about the safety of using progesterone in early pregnancy. There is no accurate figure, but well over a million children worldwide have been subjected to such therapy during their mother’s pregnancies. There has never been any pattern of birth defects reported in patients so treated. However, there can be no guarantees that there will be no birth defects since 2% of all births are associated with some sort of birth defect (usually mild). But, we can say there is no reported increase in the rate of birth defects with progesterone therapy prescribed in early pregnancy. Please feel free to discuss this situation in more detail with your doctor.

    Package Labeling:

    In the 1970’s, a series of reports appeared that linked synthetic progestins with birth defects. Shortly thereafter, the Food and Drug Administration required that a warning be placed in the package insert of all progestin and progesterone- containing compounds, stating that these compounds should not be used during early pregnancy. Most of the data that linked progestins with birth defects have been withdrawn. In fact, the major study that made the connection between progestins and birth defects was found to have misinterpreted their data. Natural progesterone has never been associated with birth defects in these studies or any others. This makes sense since progesterone is the dominant hormone produced naturally by the body during pregnancy. Nevertheless, the package insert still contains the warning and it is uncertain how long the FDA will continue to require this labeling. Naturally, one would become concerned after seeing this warning and therefore we are providing this explanation.”

    I think that women need to educate themselves when it comes to things like this. My fear is that one person can easily start a firestorm of unnecessary worry and fear in a place where it is unfounded. On the other hand, I also feel that sometimes we as humans are often too lax when it comes to certain things- esp. in pregnancy. I have heard of women whose Dr’s tell them it’s OK to have a drink or two in pregnancy… and onward. In my opinion education is the key. I suspect that if the woman who wrote this post had sat down and discussed her concerns with her RE she might have gotten a better explanation as to why those warnings are on the box.. and in my opinion that can make all the difference in the world. ;o)

    • THANK YOU for this information!! I know I’ll sleep better tonight.

      I love your blog too ūüôā

      • XO mamma.. I wish she still allowed comments on her own blog because I would have posted in a second.. It pains me to think that other women- (hormonally juiced up from IVF) might find her post and have an unnecessary panic attack from what she posted. In the end it is what it is though- hopefully they will do like me and call their Dr. stat! LOL!!! Hugs to you mamma…

  4. i think it’s true there is still a lot we don’t know about infertility drugs & procedures. It’s also true that different people have different bodies & will be affected differently (& have different success rates) using the same regimes. I will admit that concern about what the drugs I was taking were doing to my body was one of the reasons we decided to stop treatment when we did. (Not the only reason, but one of them.) The last IUI injectable cycle we did, in particular, was not pretty, & the physical side effects weren’t helped by the stress & anxiety I was going through.

    But that was ME. Your situation could be completely different. I think the thing is to be as well informed as you can be, ask lots of questions of your dr, & make decisions together that are the best ones for YOU & your situation. Paranoia may not be helpful — but neither is sticking your fingers in your ears & singing lalalalala as you race off in hot pursuit of a baby at all costs. ; ) I’m all for making a plan, setting limits at the outset (even if you eventually decide to go beyond them), and aiming for a healthy balance & happy medium. : )

  5. I think the best way to ensure support, and not retaliation, from other bloggers, is to make sure that when we tell our truth, through our story, we make sure to word it in a way that makes clear we realizing we are telling our, and only our truth. The minute we start generalizing what we’re experiencing and expressing those experiences as universal truths, that is when we get ourselves into trouble and people are less likely to support us and more likely to defend themselves. I learned that the hard way with my SAHM piece. And I think that was the problem that SIF ran into with her piece. While I believe she intended to tell her own story, some of her declarations were sweeping and others took what she said as presentations of universal truths, not her own personal truths. While I believe she didn’t intend that, many people read it that way.

    Ultimately, you are right, it’s complicated, so, so complicated. Luckily we have thoughtful, well informed bloggers like yourself writing posts like this to get us thinking about this stuff. Thanks for this.

  6. Thank you for the link to that blog – I think the ALI community is right here! I’ve only been blogging since July, and I can’t believe the support that’s out there. I’ve been trying to find it, as it greatly helps me. This is how I found you, as well! I’m signing up to follow your journey.

  7. For me, support in the ALI world depends on the person you’re supporting. While some people can handle being taken to task and learn and grow from differences of opinion, others can be in a place where an attempt at debate would crack them into a million pieces. I saw an example of the latter this week and can’t stop thinking about it. I try to tell this difference and respond accordingly.

  8. To be honest, I don’t see her post as being supportive at all. Yes, I think it is crucial to be honest about the possible side effects of fertility drugs, but I agree with the above commenter. She started off the post by saying that it was her own opinion, her own story, but she made a lot of generalizations about pregnancy after IVF. I’m assuming the reason she mentioned her friends losing their babies after doing IVF is because she thinks the two are connected. She then goes on to say that she thinks that maybe things happen (or don’t happen for a reason) and, personally, I just don’t subscribe to that mindset. If fertility was given to those who most deserved it, there wouldn’t be crack whores out there parenting child after child while good people are left childless (or are left with fertility treatments as their only option).

    And I think it is hurtful that she doesn’t allow comments, because like a past poster said, someone going through IVF may read her post and start to panic about her choice to do so. I’m thankful for the poster that shared the information on progesterone support, I just wish she could have linked to that information on SIF’s blog.

  9. Courtney

    I, personally, liked her piece because of its rawness and honesty. I didn’t read it at all as sweeping and generalized. Because she stated up front that it’s only in relation to her, I kept that tone in mind as I read the whole thing. I, like you, truly enjoy reading opinions differing from my own. I find it very mind-opening. It forces me to remain introspective and constantly re-evaluating my own thoughts, opinions, and most importantly, my own actions.

  10. I read her post with my usual analytical mind and tried to keep in mind that she is talking specifically about how she feels about IVF. That being said, I agree that some of it was generalized, but I think we’re all guilty of that at one time or another. When she was talking about pregnancies I didn’t read it as specific to IVF, rather she seemed to be pointing out that there are no guantees and every situation is different. As far as support goes, I can see it can be difficult to support bloggers sometime because it’s so emotional and some nuance is lost in writing. It’s just a fact. Unless I think someone is factually wrong, I try to let whatever hits me the wrong way to slide.

  11. I’m having some mixed feelings about her post but I agree she deserves support because it is her experience & her opinion. Once you go down the IF path, you are constantly weighing the ramifications of one decision against another. The bottom line is that if you pursue treatment, there are no guarantees that any of the medicines won’t impact you negatively in some way. Clomid likely worsened my endo & destroyed my only tube. Injectibles for our IUI cycle left me w/ an endometrioma. Our IVF cycles worsened my endo. But I did all that because my goal was a child & I believed that dream was worth it. Moving on to donor eggs, surrogacy and adoption, there are major decisions and issues with all of those options too. At some point, you have to throw the dice and hope it will work out. Maybe 100 years from now, doctors will know 100% what they are doing and the impact of all these treatments, but at this time, I’m thankful to have been a guinea pig.

  12. How funny to come read this after just sending SIF an email of support. I never read SIF’s blog before coming across the link in the comments of last week’s roundup at Stirrup Queens. But the way she was attacked in comments on other blogs bothered me all weekend. Whether I agree or not with what she wrote, I wanted her to know that I understand she was just talking about where she is now in her own mind and heart and she was explaining how she got there. It’s a terrible thing to lay yourself out bare and have people basically spit on you.

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