you think?

A recent study found that while many women are aware of the risks of declining fertility as they age, fewer are aware of the increased risk of complications during pregnancy in older women. Only about half of women experiencing infertility surveyed knew that the chance for IVF success decreases dramatically between the ages of 30 and 40. Perhaps most surprising, 85% of these women erroneously believe that IVF could “overcome” age-related infertility.

Researchers set out to “explore women’s awareness of issues associated with delayed childbearing” and concluded that women place far too much faith in the success of IVF than is warranted. They note that less than one-third of women doing IVF in their 20s and 30s go home with a real live baby, and that number decreases after 40 to about one in ten.  

The authors speculate that women’s unrealistic expectations (misguided optimism?) may be fueled by media portrayal of successful treatment in older women, prompting the need to raise awareness about the “implications and limitations of available treatment.” In other words, ‘happy ending’ not necessarily included…

An unrelated and more disturbing report I read today took my breath away and made my gut churn…

Another study found that taking a “wait and see” approach with small uterine fibroids in women of childbearing age “is no longer acceptable.” No. Longer. Acceptable. 

Fuck. Me. 

Why? Because small fibroids “have a [high] potential to grow and either to become symptomatic or to cause complications during natural or assisted conception and pregnancy.” Where their removal is safe and minimally invasive, a “see and treat” approach is strongly advised. 

This is my fucking life, in reverse, after the fact. Too late. 

In 2003, a year after my first surgery to remove a grapefruit-sized mass from my uterus, I was diagnosed with several new small fibroids. I was 34 and looking to begin building our family after finishing grad school and healing from surgery. My ob/gyn — who I had adored though have since come to question her judgment — knowing I had just been through major surgery, advised a “wait and see” approach. As I have said before and as science has just proven, this was a bad idea. Really fucking bad idea. 

Not only did this encourage us to in effect waste time trying on our own without intervention (i.e., surgery or treatment), it also failed to convey a sense of urgency about what I believe ultimately grew to cause the death of our son at 21 weeks gestation after P-PROM.    

When our son died — after 1.5 years trying to conceive him — my ob/gyn consulted multiple specialists, yet there was no consensus about the role of my fibroids in the premature rupture. I knew though. I knew deep inside that’s what happened. I had no infection, no other risk factor. But only one doctor would confirm what I believed to be true. 

Maybe they were worried about liability. Maybe they had just never heard of such a thing. After all, there are plenty of women with fibroids who suffer few (or manageable) complications with conception or pregnancy. I am not one of them. If you are, power to you, but I really don’t want to hear about it right now. 

This study confirmed the gut instinct I wished I had back in 2003 to say no, let’s not “wait and see.” The instinct I felt with every fiber of my being after coming home childless from the hospital on that crisp day in February 2006, knowing the cause when no one else would say it. 

While regret does me no good now, sadly neither does feeling justified in saying I told you so.

Tonight I shed a few more tears for our baby boy, and for me too.

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~ by luna on November 21, 2008.

26 Responses to “you think?”

  1. Oh, Luna, I’m so sorry you’re going through all this. Every time there’s a medical press release saying “wait, we’ve been doing it wrong!” I’m so sad for the people who were part of the data that let them know better, though relieved others won’t have to go through the same. It’s truly heartbreaking when it happens to someone I know, even if only online. I’m glad you had one doctor who agreed with you and that now there are more, but I’m sorry they didn’t know in time for you and your husband and your little boy.

  2. Luna, I’m so sorry. As much as I hope medical science catches up to my story, I know if it does it will be a day full of painful “what if’s.”

    (I’ve tried to write about three second paras here, re: AIDS treatment, and science finally catching up to the reality of women having children later, but nothing sounds remotely comforting. So I’ll leave it that. And just say how really sorry I am. Grief can club you over the head in the most inopportune times, in the oddest of ways.)

  3. I’m sorry Luna. . . .

  4. I’m sorry. Sometimes the hindsight really makes you feel worse. I do know it is interesting and scary how many people aren’t aware of problems etc. Even myself I knew that I would be higher risk at 40 (birth defects etc) but did not know that it would be harder to get and stay pregnant after 35 etc. I’ve also encountered many women who have no idea what is involved with getting pregnant.

  5. Oh luna. I’m so sorry. I hate the second guessing and getting information too late to do anything about it. Sometimes all these medical advances just hurt us more and make it harder to move forward. Why don’t they tell us there is never time to waste?

    Thinking of you and hoping the next part of the journey is faster than you could ever dream. Sorry we won’t see you guys this month but would love to plan something soon.

  6. It sucks so much to have your gut feeling validated so late. I’m sorry you were proved right this way. So true about the optimism with IVF bit. The stats are so sobering. A good friend is experiencing failure with the process at age 29 and it breaks my heart to read the success rate dramatically declines in the 30-40 age group.

  7. I’m so sorry. And I;m mad. I;m so mad the woman’s reproductive health is so fucked up. Between the medical establishment and the media(with their happy endings) so many women get screwed out of what I see as a God given right. I just get so mad. And sad.

  8. Oh Luna,

    i am pissed as hell for you. thank you for posting this out there; the knowledge that you were denied you do not deny others. although of no consequence my obgyn with Emi was a horror – i got certain diagnostic tests done far later than I should have and therefore did not find out that Emi was a fatal baby until very late in my pregnancy. unfortunately we put our faith in our doctors blindly at times, and have to learn in the hardest of ways that they are not always right or well informed.

    i am so sorry for your tears, I wish i were in a position to wipe them away.

  9. there’s nothing worse than regret. I hate that for you, for me (diagnosed with “menopausal ovaries” at age 31) and all other women who’ve been cheated out of the most natural gift.

    Unfair does not even BEGIN to describe it.

    I’m so sorry.

  10. Oh, Luna. I am so sorry for your tears and pain from yet another punch in the gut from IF. It is just so unfair.

  11. Luna, speechless, I’m sorry, I’m mad for you. I feel you experiencing the helplessness of losing your precious baby without answers all over again and it’s just wrong. Love to you.

  12. Yeah, I had fibroids too and no one said they should come out. They all said it was no reason for me not getting pregnant. I was so scared about losing my entire uterus, that I didn’t choose the surgery. I regret that I didn’t do it because 5 years later, I ended up doing a uterine embolization anyway. I still think I would have had a better shot at conceiving without them.

  13. So sorry luna. I wish I had better words to offer you, but I know there are none.

    xo

  14. Oh, Luna. I feel for you. The knowledge available today makes us all look and feel like such naive, gullible girls. I find these studies so hard to read now that the time when they might have made a difference has passed. Sigh.

  15. The science was there in my case, but the anticardiolipin antibodies in my blood remained undetected until C died. And I am totally tortured by the idea that I. could. not. save. my. son. I hate it. And I will spend the rest of my life running a course of what-ifs through my head. Much like you, I’m sure. I’m so sorry that science did not save your son, Luna, and that you could not be spared this heartache and loss. I wish I had more to offer you. XO.

  16. I wish medicine had more definitive answers for you. I can only imagine how hard this new research is to digest given its implications for your previous path. I have seen the widespread and erroneous belief about the inevitable success of IVF and it sadly sets so many up to be even more broken hearted. I’ve known all along how low the odds are and this is precisely why I’m so terrified to throw my money and hopes in this direction. There are no guarantees. Thanks for sharing this research.

  17. That’s really hard news to hear Luna.
    While it might be well and good for those that come after (and good luck to them) it’s a tough thing for you to carry.

    I’m sorry

    Barbs

  18. I am so sorry and I am so pissed to hear this too. How infuriating as I know we all can’t help sometimes looking back on our path and thinking, “What could I have done differently?” We trust the medical advice we get but so often our gut tells us something different. I’ve struggle with that too and I know how horrible it is to feel like you should have gone with your gut, but you were making the decisions the best you could at the time. I am sorry and I pray that in 2009 you feel like things are moving forward and not have to ever feel like things are happening in reverse.

  19. Oh Luna, I’m so sorry. It’s so frustrating to look back on how naive and trusting I was … always believing I’d end up on the winning side of the statistics. To have lost your son, though, that’s a whole new level of unfairness. Wishing you peace, as always.

  20. Crap, I’m sorry. It is absolutely not fair. I knew all those things and was anxious to start trying and started at 34 just like you. Like you, my OB said it was ok to delay testing. I was fertile at the time, DH was not. Then we conceived Ernest and my mom had a baby at 40 . . .I was only 38 and had a miracle baby. I must be super fertile. Fuck that.

    You can’t fix the past. It doesn’t help to wish otherwise. I still do it – perhaps every day.

    I’m sorry again. I didn’t mean this to be about me when I stared to comment. It just sucks.

  21. Finally getting some answers as to why it might have happened does not in any way make the loss of your son any easier to bear.

    I am so, so sorry, dearest Luna.

  22. Wow. That really sucks. I mean, really, really, really sucks. You’d think that the universe would run out of ways to make you ache for your lost little boy, but there seems to be a limitless supply….

  23. My experiences and interactions with other women have lead me to believe that the first article is 100% dead on!

    As for second article… I have a few small fibroids… and my mother has several LARGE ones (that she developed in her 40s and 50s) … hmmmm???

  24. This study actually irritates me for another reason. Why, oh why do they only include women? Men are a very real part of the problem. They are just as affected by the media portrayals.

    They are also finding out that male fertility declines after age 35 as well – with higher risks of miscarriage associated with advanced paternal age.

  25. I am 37 and just starting to plan on trying for a baby next year. Unfortunately, I have been dealing with fibroid issues also. I had a new procedure, the MRI ablation, and it did not work. The large fibroids are back! Now I’m trying to decide between myomectomy and uterine artery embolization. It seems like both have possibile risks for fertility. Does anyone have experience with either one of these?

  26. Luna-WOW! DITTO FOR Me!! I had 4 fibroids and didn’t know about it until I was pregnant. My husband and I were trying to conceive for 1.5 years and we were having intra-uterine inceminations. Docs say fibroids USUALLY don’t bother the pregnancy but from day one I had problems. My water broke when I was 18 weeks gestation…I gave birth to my son at 23 weeks. He was born the morning of Dec 6th, 2008 and died that evening.

    Worst pain ever.

    Last Tuesday I had an abdominal myomectomy to remove the 4 fibroids and in a couple months we can try again. I am 38 years old and I don’t have long, so taking the wait and see is not going to work for me. I am going to try IVF now. It is covered by my insurance so at least I don’t have to worry about the expense.

    I am sorry for your loss. I truly know what you are going through. I just want to know…when will the pain go away? My heart is broken.

    Tonight…I shed tears for my baby boy, myself and you too Luna!

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