October 26, 2011

Post Traumatic Reproductive Stress Disorder

Click on the image to read more about PTSD. Also, is it just me, or does she look like Molly Ringwald?

My old RE called me the other day to check on me (she’s so sweet and I will never be able to replace her). We were talking and she said something that I think was meant as half joke/half serious. She said if there were such a thing as Post Traumatic Reproductive Stress Disorder then I had it. Although I’m pretty sure this diagnosis is not officially part of the ICD9/DSM medical codes I think this is a REAL THING. Although my doc was sort of joking… she also sort of wasn’t. She was recognizing that I have been through a TRAUMATIC experience with my girly parts. TWICE.

When I mentioned this on twitter I got quite a response and several people asked me to blog about it. So I am. First, my story. I think most of you have heard my story but here are some old posts.
The Spiraling Insanity part one

During my most recent “pregnancy” (I struggle to even call it that) I spent my entire 5th week reliving last year’s nightmare. I recently moved and was having A LOT of difficulty finding early pregnancy medical care. My first ectopic pregnancy gave me almost NO symptoms so I was worried that if it happened again, I wouldn’t know to go to the Emergency Room. It’s scary to think that you could actually DIE with little or no warning.

[My apologies if I sound overly dramatic, even I think I sound overly dramatic. But those are the medical facts.]

So I was FREAKING OUT. I couldn’t sleep. I was reliving the nightmare in my head. And being a general pain in the ass to the docs. That abject FEAR is probably why I barely even think of myself as having been pregnant or as having lost another baby. I never allowed myself to even consider the possibility that this pregnancy could work out. Or maybe I’m just still in DENIAL. I’ve been camped out in DENIAL-land since 6w0d when they said it was likely in the tube.

It also doesn’t help that I have some other PTSD on top of all this. I watched my father die a few months ago. I literally watched him struggle for and take his last breath. I stayed up all night giving him morphine and hoping that he was in enough of a narcotic haze to not know how much he was suffering. I still don’t know what he felt – hopefully nothing. But for several months (it’s finally starting to dissipate) I couldn’t think of him without thinking of his last few hours.

So. There you go. I’m a little wonky in the head. Understandably so, I think. But do I have an actual medical/psychiatric condition? I don’t know. But sometimes giving a name to something helps us fight it. That’s why I think those with “Unexplained Infertility” suffer a little more. Having a diagnosis is half the battle of curing the illness.

But I know, that regardless of whether this is officially recognized, it is a real thing. And I know I’m not alone.

Apparently Lisa (of Three Cats and a Baby) has IF PTSD. She writes about it here. Lisa is a CANCER survivor and has lost her uterus. Um… I can’t think of anything more reproductively traumatic. Not only can she not bring herself in to the doc’s office for a much needed check up and Rx refill, she freezes if she even picks up the phone to make the appointment. I can still make phone calls and get myself to the doc. Lisa can’t. I can only hope that little Jay, her long awaited adopted son, provides some comfort to her.

Miss Ohkay is a Recurrent Pregnancy Loss survivor. She also has difficulty making and keeping doctor appointments. She has decided to adopt and it sounds like she may have a baby early next year. But still no doctor appointment.

Waity Katie is a new twitter follower who has also experienced pregnancy loss and urged me to blog about IF PTSD.

Jen (of This Is More Personal) also asked me to write this. To my knowledge Jen has not experienced pregnancy loss. In fact, I’m pretty sure she’s NEVER been pregnant. Which is it’s own traumatic hell. How do you keep going after so many BFNs? For those of us with multiple losses, at some point, we call it quits. It becomes too dangerous, too emotional or even just impossible to continue trying.


But where do you draw that line when you’ve never seen that second line? The fear of never seeing that second line must be just as crippling as the fear of seeing it after loss.

Anyway, I guess the bottom line here is something we all already know. That infertility bonds us, binds us and stays with us long past any successes or failures we have. Everyone’s story is different but yet we all experience the same emotions. And that is why Jay (of The 2 Week Wait) has EVERY right to blog about #IF even though she is currently pregnant. IF I choose to try again and IF I’m successful, the pain and the trauma I’ve experienced will most certainly not disappear. It’s a part of me. For better or for worse. And I will always be afraid of that pain. And that’s NORMAL. NOT crazy. NORMAL.

All we can do is help each other. So… who wants to make some phone calls for Lisa and Miss Ohkay?


11 Responses to “PT(R)SD or IF-PTSD”

  1. E Says:

    Wow, beautifully written, speaking straight to the IF’ers deepest thoughts. You have my heart. Thanks.

  2. I’m sure your heard this but… I’m so sorry for what you’ve been through this last year. This post is so eloquent and sums up what so many of us are feeling. It’s all so very traumatic. My mc last summer at 12 weeks was sudden and bloody and as traumatic as a car wreck. We all have our PTSD issues. I’m 7 weeks pregnant but over analyzing every twinge. Every symptom. Or lack there of. I feel in my heart that this pregnancy won’t end well. I can’t help it.

    We need a twibbon.

    • Stolen Eggs Says:

      Aw sweetie. I know. I’m so sorry you’re not able to enjoy it right now. I wish that weren’t the case. With every fiber of my being I wish you could just relax and enjoy being pregnant. Like a normal person. We were cycle buddies on this one, with embryos the exact same age. So I will be here for you every step of the way.

  3. missohkay Says:

    I did make and keep an appointment for my yearly exam back in February, so yay me! I don’t know why I can’t seem to make the RPL one… I even wrote a very persuasive blog post trying to talk myself into it! Thank you for writing this post. I know you’ve been through so, so much. I hope the traumas start to fade a little.

  4. IVFJess Says:

    I know I have PTSD. Even though I’m in my third trimester, I’m still not “cured” from my previous losses and IVF trials. It’s so hard. Thanks for blogging about this and raising awareness. Hang in there- we are all here for you. xxx

  5. While it’s not the same as your father, my grandmother and I were really close and I was there for her final hours…and it still weighs on me. It forever changed me. And I am still years later moved to tears when I really think about it. You took care of your dad through so much of his sickness and I know that will stay with you and changed who you are.

    And I really related to what you said about feeling like you are being dramatic about being in a life or death situation….but the reality is those are the medical facts. It’s easier sometimes to tell yourself you are just being dramatic or silly rather than face how serious of a situation you were in. I’ve done that in two ways- –

    My cancer was caught early and all I needed was surgery to have it all be gone. So, it makes me feel like a fraud to even say I had cancer. It makes me feel dramatic to talk about it at all…other than to say I have no uterus and that sucks.

    The other way I pretend I’m beng dramatic (but really I almost died) was years ago when I lost half of all the blood in my body. I had a serious allergic reaction to fertility meds I was on…which caused s systemic blood infection…and a stopping of my treatment in mid cycle. That really screwed with my body and caused me to hemorrhage blood. I put off going to the hospital and told myself it was no big deal (mostly b’c one time I did go for bleeding and they made me feel stupid and said I was fine)…but when I finally went they told me that if I just went to sleep (my real choice before family made me go) I could have died in my sleep that night. That’s the fact. But, if I ever talk about it (rare) I like to pretend that’s just a dramatic re-telling of a story. It actually wasn’t until I requested my medical records in order to dispute a bill that I realized how serious that whole thing was.

    Anyway, I think you are right that we need to acknowledge it to fight it. And so many of us have varying degrees of it. Sometimes doctors are so focused on the physical treatments that our fragile mental states get overlooked– especially the long lasting effects long after treatment ends. Although your doctor sounds better than most.

    (I’ll stop rambling on your blog now!)

  6. sassyntubeless Says:

    Like, IVF Jess, still feel PTSD even in the 3rd trimester! There is no cure for IF and there is no healing from it!! you are not being overly dramatic 😦 I’m still scarred from my ectopic and I doubt I will ever heal from it. Hugs xoxo I’m here for you whenever you need me

  7. Jay Says:

    First off, thank you so much for your very kind words. You have always been nothing but BEYOND supportive to everyone in the infertilty community… even when you have been dealing with seriously f*cked up stuff (forgive me cursing but it’s appropriate). Second, I think it’s extra thoughtful that the RE called you to check on you. I love when doctors actually have compassion & go beyond the usual protocol. And frankly, really, who can blame you at all if you DO in fact of post traumatic stress disorder. Even still, I’m still VERY proud and utterly blown away by how much you’ve been through and how hard you fought tooth & nail to get through it all. You have my sincerest love and respect. Infertilty is NOT for the weak and no matter what happens on our journey, if you end the day any level of sane, you should pat yourself on the back.Thinking of you my friend…

  8. […] and at the same time I feel numb at this point. Alex at Fox in the Henhouse recently wrote about Post Traumatic Reproductive Stress Disorder (not technically a “real” disorder as per the DSM, but as a semi-professional in the […]

  9. Mali Says:

    Hi. I’m not sure I’ve read you before, but saw that you had suffered two ectopics, and wanted to come by. Some years ago now, I also had two ectopics, and wanted to say how sorry I am. It really stinks being on the wrong end of the odds.

    And on the Ectopic Pregnancy Trust website ( – which has been a godsend to me over the years – they actually have a link about PTSD, because the symptoms and flashbacks women have after eps are so similar to PTSD.

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