The latest obsession 

 

Source: gratisography.com

 
With every loss, I want answers, I want explanations, I want doctors to say why this happened and how to fix it. They don’t offer any reasons why. All they keep repeating is: just bad luck. That makes me especially angry. Isn’t it bad luck when someone gets melanoma? But won’t the doctors run tests and treat it anyways? Isn’t it bad luck when someone has a car accident? But won’t the doctors help this person regardless of their luck? So why is it only with pregnancy loss that “bad luck” is an acceptable diagnosis? I want all tests and all possible treatments available. I want, no, I need to know I’m giving my babies their best chance. 

I think I know the reason doctors believe it’s enough to say “just bad luck” regarding pregnancy loss. It’s because they follow it with a “just try again”. They can’t say just try again to someone with melanoma or whom has had a car accident. What doctors don’t seem to realise though, is that trying again is not so easy. Sure, physically it can be fine. But, at least in my case, I feel that each loss takes away a little piece of my heart and of my soul. And I don’t know what the limit is, before there’s nothing left. I hope I’ll know when to stop before it’s too late, but I’m afraid I won’t see the signs, so desperate I’m to have a living, healthy baby in my arms. 

In my last ultrasound, while I sat across the doctor, hearing she repeat this baby I’m still carrying will not survive, I couldn’t hold my tears. To console me, she reminded us that we still have 6 frozen blastocysts. I know she meant well and I’m grateful for my little embies. But all I could think about at that moment was: I can’t go through this 6 times more! There will be nothing left of myself by the end of it! And that is what most doctors can’t understand, because only those who have felt this kind of heartache understands. 

I know we all hear stories of these very strong women who had 14 miscarriages or even 28 (!!!). I admire their resilience, no doubt, but everyone’s limit is different and as long as you can handle, sure, keep trying. I never thought I could have 4 losses either, so maybe I can do it 6 more times, I don’t know. What I’m certain of is that my soul would suffer, my marriage would suffer, my carrier would suffer. How much suffering is acceptable before it isn’t worth it anymore?

It’s easy to acknowledge that I have had trouble trusting doctors these past years. When they refused to give me answers, I started searching for them myself. I read blogs and articles and scientific papers and whatever I could put my hands on regarding recurrent miscarriage. I sought a second and a third opinion. But since I had one ectopic pregnancy and two missed miscarriages, I didn’t fit the criteria, so only basic testing was done. 

I became obsessed with immunological reasons for recurrent miscarriage and was convinced it was my issue. I still think it can be the issue and I’m hoping I’ll finally get some testing in this area soon. But back then, there’s nothing I could do on my own without a doctors approval on this matter, so I had to turn elsewhere. 

I bought and read “It starts with the egg”, from Rebecca Fett. Cleaning myself and my house of toxins became my new obsession, along with vitamins and supplements. I strictly followed the author’s recommendation of stripping the kitchen off of any plastics. It wasn’t easy, I must say. I also changed all my personal hygiene products and house cleaning products to natural ones. My new mantra became: not put on myself anything I wouldn’t put in myself. Of course, I also followed the suggestions for vitamins and supplements. All of this without the supervision of my doctor. I’m not proud of it (I’m actually ashamed) nor I recommend anyone doing this. I tried asking my doctor which vitamins and supplements could help me, and all they recommended was folic acid. They clearly said there was nothing I could take to improve my eggs’ quality. I simply disagree with that statement. 

All of that was implemented (together with the obvious no alcohol, no caffeine, no exercise) months before this pregnancy was conceived. But it still failed. Not that I’ll go back to the plastics and all that, but I need something new to obsess about. Something to give me hope and a little sense of control over any of this. I know it’s irrational, but if doctors won’t give me that glimpse of “let’s try this new something, maybe it will work”, I go looking for it myself. 

And my latest obsession is MTHFR mutation. I’ve read many blogs and articles connecting it to recurrent miscarriages. I don’t know if I have the gene or not and I don’t think the doctors here will accept my request for testing for it, since studies on this are not yet conclusive. So again, I decided to take measures on my own hands and ordered a personal genome test online (23andme). Regardless of the results, the “treatment” is very simple, so I’ll follow it no matter what. It consists of taking bio-active forms of B-complex vitamins, instead of the usual ones. I’ve already ordered a new pre-natal multi-vitamin with these bio-active substances to substitute the one I’m taking now. 

Rationally thinking, I know probably it won’t help. But if it can’t hurt, I’ll try. And I’ll keep trying until stopping is the only option. 

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23 thoughts on “The latest obsession 

  1. Thinking of you.. I know these feelings all too well. I’m so sorry you’re going through this and this is truly a battle I wouldn’t wish on my worst enemy. This is exactly why I took an entire year off because I didn’t know if I could try again either.. there is a limit and you start to not even recognize who you’ve become because you’re surrounded by so much grief. It’s so unfair and I often question why I could even get pregnant to just lose them. Seems so cruel.

    I didn’t really have an answer either because all of our Karoytyping and chromosomal testing (from Good Start genetics) came back normal. All of my other testing came back pretty normal too. The only thing they could find was hypothyroidism and PCOS and that my hormone levels weren’t right. What testing have you done? Although I don’t have the MTHFR mutation, I still changed all of my vitamins to the active forms too. I totally understand your thought process here. I sent your blog link to a good friend to see what she thinks. She’s had 7 miscarriages and is now 30wks pregnant with her 8th pregnancy. She has a lot of stuff going on with her body, but is really knowledgeable. Are you on Twitter? There are a lot of us with RPL there too and it’s so nice to be able to throw out a question quick.

    Sorry for the really long reply. I just want you to know you’re not alone and if there is anything you need, let me know. ❤ Sending love.

    Liked by 1 person

    • Thank you for commenting. You’re so right, I feel overwhelmed with grief, locked in this infinite cycle of finding the strength to try again, getting pregnant, anxiously waiting to see if the baby develops, then loosing it and being thrown back into grief. How can this not overtake our lives? At first they would only do basic day 3 hormonal testing, all normal. Not even my progesterone levels after ovulation where checked. They insist is not important (!!!). Then after fighting a lot and seeing many different doctors, they agreed to check my thyroid, some antibodies (APA, ACA, Lupus), some thrombophilia, but don’t know exactly what, and my karotype. All came back normal. But I have no idea of the levels or anything, because the results go straight to the doctor and he only gives me his interpretation (normal). My husbands karotype was tested but we never heard the result, so we assume is normal. The babies (or products of conception) were never tested because I was never allowed a D&C or D&E, always managed it with Cytotec. I’m hoping they’re will take me more seriously now and run more tests. I don’t have a Twitter account yet, but could make one if you say it’s helpful. Than you again for reading and sharing, I really appreciate it.

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  2. I know how you feel. I’ve done all those things – read that same book, bought all new products, tried the CoQ10, new vitamins, etc. All on my own too. I was never tested for MTHFR with my first two losses but am being tested now, finally. I don’t know if it will matter much but at least I’ll know. I often wonder how much will be too much, when will enough be enough, and I don’t have an answer. You’re right it is different for everyone. Just remember to be your own best advocate and to make sure your voice is heard. Hang in there.

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    • Thank you for sharing. Sometimes I feel like I’m loosing my mind, trying these things and thinking they can make a difference. I mean, none of my sisters or my friends or my cousins have done any of that and they have perfectly healthy babies with no difficulty. They all use mainstream beauty products full of chemicals, don’t eat organic, don’t take any vitamins, etc, so how it doesn’t affect them? But I keep trying and hoping it might help me, that’s all I can do for now…

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  3. There is so much I want to say about this! First off, I am just so sorry again. Second, I can totally relate to how you are feeling. I hate not having answers, I hate how drs think you can just try again, its just bad luck, or that you havent had enough loss to qualify for testing according to their systems. All BS in my opinion, and Im sure in anyones who has gone through the hell we have.
    I was actually diagnosed with MTHFR before any of my losses, and they put me on Folgard, which is supposed to be the “gold standard” for treating it. I still miscarried 3 times. I am glad u are advocating for yourself through all of this, bc we know ourselves better than any dr does. Sending much love to you!!

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  4. You definitely have to advocate for yourself in this world we are in. Have you heard of Dr. Braverman (men)? He is an RE immunologist (not sure if that’s the right terminology) out of NYC. I know of few blogging friends that have consulted with him. I don’t know if that’s an option for you financially, but might be worth checking into if you can.

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    • Thank you. I try my best to advocate for myself, but it’s hard… I don’t live in my home country, so there’s a cultural clash and a language barrier to overcome too. I’ve even been yelled at by a doctor once, he kept yelling at me for a good 10 min while I just sat there crying. All because I was asking for more testing. It was horrible. Maybe I’ll blog about it another day. I’ve heard about Dr Bravermen before from other blogs and thought about getting an appointment, but being in Europe it’s quite far and I’m pretty sure I couldn’t find a doctor here to follow his treatment plan. I’m hoping this time they’ll send me to the only specialist in RPL in the country, otherwise I’m looking at some clinics in the UK, so it’s a little closer.

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      • Hey gals. Dr. Braverman is a reproductive immunologist. There are others in the U.S. He was the only doc who seemed interested in and was able to help me stay pregnant in the past 3 years. His website is a bit kitschy but he knows his s**t, takes questions and does short free Skype or phone consults: http://www.preventmiscarriage.com. There are other RIs who cost less. Their testing is less comprehensive and protocols sometimes less aggressive but they cost less too so are something to think about. Happy to email if you wish. spirit.baby.please.come.home (at) gmail (dot) com.

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  5. I am so sorry for your losses. It’s just heartbreaking. And, I know it’s so hard not knowing the answer the why question. I too became obsessed with the MTHFR gene mutation and it turns out that my husband and I both have it. My doc told me that the most important thing was a higher than normal dose of bioavailable folate and one baby aspirin per day, starting before we conceive. If you do have the mutation and need direction to resources, let me know. I could teach a course on the MTHFR mutation at this point.
    Thinking of you and sending love!

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  6. I am so sorry you are going through this and wanted to let you know you aren’t alone. I can speak from experience when I say that there is absolutely no way to know how many losses you can endure. IF you carry multiple copies of the MTHFR mutation you are doing the right thing, and even if you are not, you are still doing the right thing by changing your vitamins. Most doctors are incredibly dismissive of it, so you have to be your own advocate, even if it’s just silently switching up your vitamins and supplements. I am also wondering whether your doctors are checking your uterus post miscarriages to rule out the possibility that your uterine lining is contributing to your problems (an embryo won’t always thrive if it implants on a poor spot). SO many hugs to you.

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    • Thank you for your suggestions! This baby was conceived with IVF, so they checked my lining at the transfer and said it was fine. But no details, so I don’t really know. They’re not as open to discuss these things here, unfortunately. I try not to complaint too much, because I feel grateful for having the treatment basically for free, but there are downsides.

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  7. Hmn. With all due respect to the green folk out there I do not personally believe that avoiding all toxic products in your home or diet is likely to alter whatever is causing your losses. I don’t know how old you are but you don’t suggest advanced maternal age (over 35 or, God forbid, over 40) is at play here. If not and you’ve had the sperm tested and it is within normal ranges in terms of morphology (clearly motility and count are functional even if lower than normal ranges given you’ve had at least four pregnancies and I assume no ART), I think you may be dealing with chromosomal or immune issues. Let me know if you want to talk about either. My thoughts and deepest empathy are with you meanwhile.

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    • I agree with you. I didn’t really expect these changes to “cure” me, but since doctors were not willing to do anything, I just felt I needed “something”, anything to give hope that I’m going forward somehow. Don’t know if I explain it well enough. Anyways, I’ve just turned 33 yo and we’ve been trying for almost 3 years. The first 3 pregnancies were naturally conceived, but this last one was IVF. My husbands semen analysis always came back normal, so we didn’t even do ICSI and got 10 eggs fertilised out of 12 mature (IVF policies are a little different here, they aim at no more than 12 eggs). I guess that’s indicates his sperm is fine? One embryo was transferred on day 2 (again, policy) and 6 more made to blasto by day 5 and were frozen. So I tend to think that fertilisation is not our issue. I also suspect immunological and I’m hoping to get some testing on this, at last. I appreciate any suggestions you may have. Thank you so much for reading and commenting.

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      • I agree with you I do not think the sperm is at issue unless you have antisperm antibodies but that is exceedingly rare. In your other response to me you said they will not do any testing. If you let me know where you are I can make some suggestions.

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