miscarriage number two. so now what?
March 1, 2015 12:04 AM   Subscribe

This was me. It took months to heal then then a few more to get pregnant again. We knew we were pregnant for basically three days before I realized something was wrong. I feel dismissed and I need to be able to advocate for myself better. I am so full of rage. So- people who have experience more than one miscarriage- what do I need to know? What should I be asking? And hey, if you have any nice success stories of babies after more than one loss, that'll be great.

So we're pregnant again, but after some early spotting and a quick sonogram it's looking like a blighted ovum. The doctor tried to tell me that my dates are off, but a combination of traveling and illness makes that impossible. I'm really, really angry that I have to wait another week before they believe me. The sonogram doctor did say that he really doubts this is a "good pregnancy" regardless due to the prolonged spotting. My regular midwife is off for the next few days so I've got to sit around stewing in my own sad, pitiful, ragey juices just waiting anyway.

I have been going to a midwife, but after this I am going to try and find a doctor. I'm really hoping this pregnancy will be over too fast to find a new doctor at this point- so what I need to know is what I am supposed to ask for. I'm reading up as much as I can (it makes me feel a little more in control) but when I asked the midwife about some of the stuff I found, she was very dismissive. I need to know what to ask about so that I don't go home and find out a week later that I should have asked for this test or that test.

1. So assume this miscarriage is happening and now it being number two, someone will actually look into the fucking thing. What tests should I look at? The midwife said that she'd test me for thrombophilia but that was the only thing she really thought of off the top of her head. Can I insist on them testing for more than one thing at a time?

2. I asked about progesterone, but the midwife said basically all that does is prolong bad pregnancies. If you know of some science that disputes that, link me to it please.

3. I understand that about half of the women who experience this just never get to know the answer as to why. Have any of you got a definitive answer? How long did it take to get one? Months?

4. How do I even find a doctor who specializes in this? If you're going to tell me 'listservs' you are also going to have to tell me what the fuck that is because I don't know. Googling is turning up a lot of garbage clinics that advertise fertility treatments and vaginal rejuvenation in the same breath. I'm in New York City if that helps at all.

5. I'm sure that the doctor at the sonogram place has to do go by the book or whatever and make me wait for another week to double check and make absolutely sure that I didn't get magically pregnant a week later than I said I would have- but he didn't even explain what could be happening. He just said "we can't see a anything right now. We know it's not ectopic, and we can see a yolk, but nothing else." I googled a little bit and it says that usually means a blighted ovum. Am I wrong about that?

6. Do I need to wait until this miscarriage is over before I can start the testing process? We're now at square one a year down the line and I'm barreling toward 35 so I don't want to wait for anything.

Please don't tell me to look on the bright side or to keep hope alive or whatever. I am so so angry. Knowing I can get pregnant or that a lot of women experience this is not helping me right now. Right now I am so so angry that every single person, every doctor that told me I should just relax, every person who said not to worry, everyone who told me I should be happy that I know I can get pregnant? I want to stab them. I do. I'm so so so angry.

I am extra angry because my biggest fear that- that that first horrible miscarriage was just the beginning- turned out to not be unfounded AT ALL. And basically all of my friends who are bouncing babies and putting on showers have been acting like I am taking this shit too seriously. I wasn't, god damn it. I wasn't.

Sorry if this question got convoluted or aggressive. I hope it's clear enough to get some answers.

One thing I didn't address in the last question- while all of you who said that you didn't believe I was the only woman in my friend group who had experienced this, I'm sure you meant well- but you were wrong and don't do that again please. I guess maybe you all have more close women friends then me, but out of the six women that I am close to (who are all in their early thirties, recently married) three just had babies, two are currently pregnant and one is infertile due to cancer treatment. While some of them have had intentional abortions, none have experienced pregnancy loss in this way. I guess it's just my luck. I have enough people telling me I must be mistaken and you can really really believe what I'm saying is actually true, thanks.
posted by anonymous to Health & Fitness (36 answers total) 6 users marked this as a favorite
And hey, if you have any nice success stories of babies after more than one loss, that'll be great.

I'm so sorry, both for what you're going through and that I can't help more.

My sister had three miscarriages in a row, and went on to have two happy, healthy children. One's a firefighter and the other's going to college this fall.
posted by harperpitt at 12:42 AM on March 1, 2015 [1 favorite]

I'd be pissed too. I absolutely wouldn't bat an eyelash at finding another doctor - one who listens. Just reading about dismissive doctors pisses me off for you. Consider a therapist too, just to have someone to vent at in a safe place. I read an article on Yes and Yes recently about abortion doulas; if you're in NYC I wonder if you would find a doula willing to help you - go to appointments, help collect information, ask questions, help advocate for you, provide support, etc. I think that would be great.

When I was going through an angry phase exercise helped. Lots. My dad even got me a punching bag (and I used it).

Heather had her first birth featured on One Born Every Minute, and in her blog she talks about having multiple miscarriages like her mother. She has two little girls now.

posted by jrobin276 at 12:59 AM on March 1, 2015

Miscarriage, child #1, abortion, miscarriage, miscarriage, child #2, child #3, child #4.

In that order. All except the first miscarriage were conceived while ON the pill!

Child #2, I had LOTS of spotting through the first four months... along with some horrendous morning sickness. (That they offered me NOTHING for - I lost weight those months! And I was at my perfect weight to start with!)

I'm 13 years past my last childbirth, so I don't know what to offer as for advice...
But there is almost always hope.

Good luck.
posted by stormyteal at 1:13 AM on March 1, 2015

Progesterone is a often debated thing. My understanding, based on what my OBGYN said during my own attempts to get (and stay) pregnant, is that if you have a short or irregular luteal phase, taking progesterone supplements starting shortly after ovulation may reduce the risk of miscarriage--the theory being that if you have a short phase, the zygote doesn't have sufficient time to implant before your body starts clearing things out. (I realise you asked for links, but this isn't a thing I'm emotionally able to deal with googling right now--sorry.)

I'd get a second opinion to see if they think that it might help you. My experience with this is that I strongly regret the things that I didn't try, because at least if I'd tried them I'd know, for sure, that they didn't work for me.

Your anger here is entirely justified. Fertility struggles are dreadful at the best of times, and for people to be dismissive of you like this is inexcusable. You deserve to be listened to, and for your healthcare providers to be sympathetic to your needs and feelings about what's happening with your body, even if it's not how they'd feel about it happening to their body.

I had a miscarriage, a child, and then several more miscarriages, no more children, but I had other health complications, too. I know more than one woman who had several miscarriages, and then suddenly managed multiple viable pregnancies. Most notably, I had a friend some years ago who'd had nearly a dozen miscarriages. We drifted apart, but by the time that happened, she had two healthy children--and having just googled her, it looks like she's had a total of five, now. It must have taken her more than fifteen pregnancies to get there, but it obviously worked out, in the end.
posted by MeghanC at 1:17 AM on March 1, 2015 [1 favorite]

I'm really sorry for what you're going through. I think you are entirely right to be angry. And fuck anyone for telling you you're taking things "too seriously".

And hey, if you have any nice success stories of babies after more than one loss, that'll be great.

My own mother had several miscarriages, then she had me. She had another miscarriage after me, and then she had my sister.
posted by Enchanting Grasshopper at 1:52 AM on March 1, 2015 [1 favorite]

My sister in law had several losses and it was heartbreaking- but now she's the mother of an 18 month daughter.
posted by catspajammies at 2:23 AM on March 1, 2015

From the experience of my friends and family, four miscarriages (in a row) is the threshold where they start really really testing. And in those few cases the women I know went on to use progesterone because it was some luteal phase thing, although one of them hadn't had that confirmed. The testing tended to be about hormone levels, uterine health, things like that. They all used obstetricians - not a 'special' one just the one they were comfortable with.

One or two, even in a row, even first time trying, is within the realms of normal, I'm sorry. I'm sorry for what you're going through and that it is a shitty shitty waiting game. For doctors, for your body, for everything.

Even the testing now has to allow for not only women who aren't as sure as you but also for weird statistical outliers (so women who are as sure but their bodies work on different schedules). I had an early scan at 5w3d and it was still a sac (I had spotting) and we had to wait a week for a scan - I ovulate WAY later in my cycle than 'standard' and combined with 'able to get pregnant from sex a day or two ago' there is a larger space to play with when days/weeks matter so much. That's what they're waiting to see.
posted by geek anachronism at 2:38 AM on March 1, 2015 [1 favorite]

I'm sorry you are going through this, it sucks and no you're not taking it too seriously, of course you're allowed to be sad and angry and paranoid. I'm getting that you feel like "the other shoe had to drop" before anyone takes you seriously, and they're still not doing so.

I lost my three month old baby almost a year ago and while there are absolutely no words to describe that pain, the memory of my two first pregnancies that resulted in miscarriage still hurt as well. It is all right to feel sad and angry and completly pissed off at the injustice of it all.

Definetly look for a new doctor. If you meet one soon, maybe you can get a new ultrasound and a blighted ovum confirmation sooner than with your current midwife. I know that a lot of mefites swear by midwives (they are practically unheard of where I live), but this is probably a good time to get an OBGYN involved in your process.
Yes, there are a few more things you can get tested for. I had a miscarriage on my first pregnancy where we had seen a heartbeat and all that and then I had some spotting and went to see my doctor and he didn't find a heartbeat anymore. My doctor gave me the option of taking a pill and going home, or doing a D&C. I went with the D&C cause I just wanted to get it over with quickly. As with most first miscarriages, I was told it was normal and probably my body rejecting a defective "product", etc.
With my second pregnancy we didn't see a heartbeat on the first appointment. Doctor said it could be too soon and gave me another week but we came back and no heartbeat again so it was probably a blighted ovum from the start. Went with a D&C again. I was heartbroken and scared to death of not being able to ever have a baby. I was 29 at the time.
My doctor said that technically speaking, a diagnosis of recurrent miscarriage happens after three failed pregnancies, but he didn't want to wait for a third one before starting to look for something. I remember him showing me a pie chart of the most common causes of recurrent pregnancy loss. I'll have to look for it, but I remember I was tested for most of those, except one or two where the tests were too expensive so he wanted to cross off the other possibilities first. Of course a big chunk of the pie chart was "no known reason" so there's always that.
What came up with me were a few thyroid problems so I was referred to an endocrinologist who was very good to me and told me "you'll have a baby in your arms by this time next year". Probably not a smart thing to promise, but she was right. I had a third, succesful this time, pregnancy and a healthy baby almost a year exactly after that. He turns three today.
I'm writing this while in bed with insomnia so I don't really want to get up and make noise, but I can go look for my files and tell you which things my doctor tested me for after the second miscarriage.

Please Memail me. After a few of my own AskMes other women have been in touch with me and it really helps to be able to talk to someone who understands.
posted by CrazyLemonade at 2:48 AM on March 1, 2015 [12 favorites]

My mom had a softball sized non-malignant tumor removed from her uterus when she was 16 and was told she would never have children. I popped out on my parent's 9th anniversary after a bunch of miscarriages. I can't give you details on those.

Mom had two more before my sister was born a few years later, so I had some idea when the same thing started happening with my SO. This is one of the most traumatic things that can happen in a relationship. Just searing. Scalding.

We did get one to term without any fertility treatments and he is wonderful and took all that pain away with his presence.

She was 37. Don't give up. And do not read anything that mentions "geriatric pregnancies."
posted by Mr. Yuck at 3:18 AM on March 1, 2015 [4 favorites]

I don't know what area you're in, but could you ask your GP for a referral to a reproductive endocrinologist? It definitely sounds like it's time to talk to someone with solid expertise in fertility issues.

I'm so sorry you're going through this, and I'm so sorry that your caregivers aren't taking this seriously.
posted by nerdfish at 4:00 AM on March 1, 2015

Miscarriages are, sadly, incredibly common, so it's not that you need help getting your OB/GYN to take you seriously, so much as it's up to you how proactive you want to be about this.

Doctor - wise, you are looking for a Reproductive Endocrinologist. I can personally recommend one in NYC if you memail me (or ask a mod to, if you prefer). They will take you seriously. If you make an appointment now, and end up miscarrying after all, they can also take tissue samples if you choose, to potentially help with a diagnosis.

Best of luck, and a hug from someone else who's been through it.
posted by Mchelly at 5:10 AM on March 1, 2015 [2 favorites]

I haven't had your precise experience, but here's what I've learned as a "medical consumer."

- There is a huge difference between bedside manner and actual technical proficiency. Jerk doctors can sometimes be giving you totally appropriate care
- But the problem is that those jerk doctors sometimes don't communicate all the information you need to feel like you are taking the appropriate steps
- Conversely, sometimes overly friendly, overly communicative medical professionals are not actually giving you the best care, and you can easily mistake their great bedside manner for competence
- Specialists tend to give you more personalized attention than general practitioners (this is just my experience - not sure if its universal)
- So sounds like what you are looking for is a highly interventionist, highly communicative professional - maybe an RE is the way to go.
posted by yarly at 6:19 AM on March 1, 2015 [5 favorites]

I'm sorry for what you're going through. I was happy with my obgyn, I'm sure they could refer you to a good RE (reproductive endocrinologist) if needed.
posted by cestmoi15 at 6:30 AM on March 1, 2015

I am nursing a baby right now, a baby conceived and carried to term after three miscarriages in a 10 month period. After the third I sought out a Materrnal-Fetal Medicine (MFM) doctor who treats women with recurrent pregnancy loss (RPL). Those are the keywords you should be using in your searches. An RE will help you get pregnant, if that's your problem. In my case, I don't really need help getting pregnant but staying pregnant. As it turned out, I didn't need much in the way of intervention but having a full slate of testing (looking for everything from various thrombophilial disorders to thyroid problems to any acquired viruses, to genetic disorders -- including karyotyping me and my husband) helped rule out the major causes of RPL -- and showed me that someone gave a shit about seeing me successfully stay pregnant. And once I did get pregnant, she provided "tender loving care" throughout my pregnancy -- which was otherwise not high risk. Note that some research suggests TLC has a better effect on women suffering from RPL than any other treatment.

In the end, my testing didn't uncover anything that was a clear cause but I went on baby aspirin and high doses of bioavailable folate anyway, and when I got pregnant again, I asked for progesterone and got it. I wanted to be doing everything I could possibly do to sustain the pregnancy. Did any of those things make a difference? Maybe, maybe not. But the action of just doing something was probably at least as critical for me as anything else.

There are good RPL specialists in NYC; note that as with all doctors, though, some will focus on certain causes over others -- e.g., some focus on thrombophilias and some on immune issues (even my own MFM was like this, focusing more on thrombophilia than on other potential causes, though as I noted she tested for everything). As others have noted, though, generally the trigger for RPL treatment is three miscarriages but many doctors will see you after two in a row, especially if you're over 35.

So that was a brain dump of information. I'm sorry your circle of friends is not more supportive; you might also look to see if there's a pregnancy loss support group that is available or convenient for you. And not to sound like a raging bitch but if none of your friends has currently had a miscarriage, I'd expect at least one of them will eventually. I don't wish that on anyone but the statistics are pretty stark -- likely at least 40% of all conceptions and up to 30% of clinically recognized pregnancies end in miscarriage.
posted by devinemissk at 6:34 AM on March 1, 2015 [11 favorites]

And feel free to MeMail me if you'd like to discuss the shitshow that is RPL (and/or the specifics of my own testing and treatment). I have done excessive amounts of research on this and am happy to share it off-thread.
posted by devinemissk at 6:38 AM on March 1, 2015

Anecdote and science behind progesterone:

My cousin has pretty severe PCOS and has so far had one live birth (conceived immediately after ending birth control), a lot of miscarriages (I think about 7 at this point, all of them very early) and is right now pregnant and about 5 months along, with what looks to be a healthy baby. This last baby was conceived using progesterone, and she and her husband believe that because she had just ended hormonal birth control when her first son was conceived, that some residual progesterone may have helped the implantation - I don't know if this makes sense scientifically, but this is what they told me. This current pregnancy (on progesterone) she said it felt different from the start - with the pregnancies that she miscarried she never had morning sickness or discomfort - it was just a positive pregnancy test and then a miscarriage. With her son's pregnancy and this one, she has been throwing up a great deal, which I guess seems like a blessing to her.

Science talk:

I'm not a doctor, or a reproductive endocrinologist, but a cursory googlescholar search shows that for PCOS at least, progesterone can help implantation because there is known to be bad signaling in the progesterone receptors:

Progesterone Resistance in PCOS Endometrium: A Microarray Analysis in Clomiphene Citrate-Treated and Artificial Menstrual Cycles (ignore the fancy title, I'm only quoting the background section from this paper as it was hard to find a good review)

"Polycystic ovary syndrome (PCOS) is a common endocrine disorder, characterized by ovulatory dysfunction and hyperandrogenism, and is associated with increased risk for endometrial hyperplasia and cancer (1). Early studies demonstrated that PCOS patients also exhibit poor reproductive outcomes, suggesting possible diminished endometrial receptivity (2), in part due to anovulation and reduced exposure to progesterone with elevated levels of androgens or insulin. Estrogen receptor (ER) α and steroid receptor coactivators are also overexpressed in PCOS endometrium, signifying a reduced effectiveness of progesterone (3, 4).

Progesterone, acting through its cognate receptors PR-A and PR-B, is absolutely required for successful embryo implantation and postimplantation embryo survival in all placental mammals, including humans (5–7). Changes in endometrial steroid receptor and coactivator expression in PCOS are associated with reduced endometrial receptivity (4) and enhanced actions of estrogen (8), contributing to the elevated risk for hyperplasia and cancer noted in these women (9).

A resistance to the actions of progesterone has been described in some women with infertility (10, 11). The possible mechanisms involved in this progesterone resistance may reside in PR itself, which was first reported by Chrousos et al. (12) and is supported by recent data (13). Alterations in the expression or function of PR coactivators, chaperones, and co-chaperones that are bound to PR before activation have been implicated in progesterone resistance (14, 15). Similarly, the overexpression of co-chaperone FKBP51 (16) or lack of co-chaperone FKBP52 causes progesterone resistance in experimental murine models (17)."

In another study of recurrent miscarriage (RM), this is what they say about progesterone supplementation:

Evidence-based guidelines for the investigation and medical treatment of recurrent miscarriage

"Progesterone has been administered orally, intramuscularly and vaginally for more than five decades in an attempt to prevent miscarriage in early-to-mid pregnancy. Overall, the use of progestational agents during the first and second trimester of pregnancy is not associated with adverse effects in mothers. However, Carmichael et al. (2005) have recently reported that maternal intake of progestins in early pregnancy is associated with an increased risk of hypospadia in the male offspring (odds ratio 3.7, 95% CI 2.3–6.0).

Overall, despite considerable medical use, there is currently insufficient information to allow recommendations regarding optimal dose, route and timing of progesterone supplementation. A recent systematic review found no evidence to support the routine use of progesterone in the first trimester to prevent miscarriage (Oates-Whitehead et al., 2005). The meta-analysis indicated that in a subgroup analysis of three trials involving women with RM, progesterone treatment showed a statistically significant decrease in miscarriage rate compared with placebo or no treatment (odds ratio 0.39, 95% CI 0.17–0.91). The route of administration did not influence the results. All trials were more than 40 years old, and a modern prospective RCT of sufficient power to determine the efficacy of progesterone supplementation in women with RM is needed to confirm these results (Table III)."

So, my conclusion so far is that your midwife may be incorrect that progesterone only "keeps bad pregnancies," in that for women who have PCOS it may help a lot. However, she is correct in that, generally for recurrent miscarriages (not just PCOS ones), progesterone supplementation does not help in a statistically significant fashion, so it might not be appropriate for you.

Further conclusion - you need to find a good endocrinologist and rule out common things like PCOS.

Good luck.
posted by permiechickie at 7:06 AM on March 1, 2015 [3 favorites]

Please MeMail me for some NYC specific recommendations.
posted by defreckled at 7:11 AM on March 1, 2015

I'm typing this on my phone as I nurse my first baby. She was my third pregnancy. So, there's some annecdotal hope for you... I'm so sorry you're also going through the grief and despair of multiple miscarriages.

My OB was awful at dealing with miscarriage. After my second, I jumped ship and found an RE, a reproductive endocrinologist. That's your keyword, or an MFM, a maternal fetal medical specialist. The RE I found was able to do testing on the fetus, so I learned that the miscarriage was due to trisomy 15, a fatal chromosomal flaw. So I was able to find out the cause, and be reassured that it wasn't something I was doing wrong, or some defect that would inevitably affect all my pregnancies. Nevertheless, I was also tested for thrombophelia and my husband and I had generic testing done on ourselves.

The RE said that for my next pregnancy, he'd recommend a regimen of baby aspirin (as a blood thinner) and progesterone. He said that he'd seen great success with that combo (though he also said that logically, that was probably not what made the difference). So that's what I did, and we got lucky the third time around.

I also do not know anyone in real life who's had a miscarriage. I was in therapy from a few months after my first miscarriage until a few months into my third pregnancy. I highly recommend it. It just takes up so much space in your head, it's good to have a release for it. I also found great online support. The forums at altdotlife.com are wonderful (I found them through MeFi). It's just really good to read about others going through similar ordeals.
posted by Kriesa at 7:15 AM on March 1, 2015 [1 favorite]

I'm so sorry you're going through. I had two miscarriages in six months. After the second one, I immediately made an appointment with a reproductive endocrinologist. The problem could be as "simple" as your thyroid being off, a clotting problem that can be treated with aspirin, or just plain bad luck. We had a shit ton of testing done and everything was actually normal which was kind of irritating because I WANTED A FUCKING ANSWER. WHY DID MY BABIES DIE. You might not get one.

Find a new fucking midwife. She sounds like an asshole. Are you in/near NJ? If you are, I'd be delighted to send you a recommendation for my RE and my midwife. They all treated me very gently, laughed at my gallows humor, answered my panicked questions compassionately (even when they were stupid questions) and got shit DONE. "Dismissive?" OMG. You are going through some serious shit. It's no wonder you are upset and furious. Everyone around you should be treating you kindly and if they can't, they shouldn't be around you. Go on your insurance company's website (if you have insurance), and find an in-network reproductive endocrinologist or a maternal-fetal medicine doctor. I actually got a recommendation for my RE from two friends who both used him to get pregnant and both have healthy children. If you have a friend who needed pregnancy help, you could ask them.

I'm actually going-on 14 weeks pregnant with my third pregnancy, the first one to have gotten this far. I've been on progesterone since week, like, three or four. I don't have science for you on whether it works. It might have worked for me, and it didn't hurt anything and it made me feel like I was DOING something instead of laying around and worrying. I won't lie to you: this has not really been a fun pregnancy. It's gone pretty well, but I'm really anxious about losing it. I think this is normal for what I've been through. Part of this experience has been not only mourning the loss of two pregnancies, but mourning the loss of...well...of innocence of what can go wrong. I've always been a hippy-dippy, midwife-having, natural-childbirth wanting granola lady. That has not worked out for me. But fine, if I have to stick pills up my hoo-ha three times a day, and have sixteen ultrasounds a month and take antibiotics to have a baby? FUCKING FINE.

It's so hard being surrounded by pregnant friends. I FEEL YOU THERE. Everyone around me was pregnant during both of my losses. Pro-tip: stay out of IKEA. That place is crawling with pregnant ladies picking out cribs. Don't even. I actually saw a therapist for a few sessions because I was so sad and angry I felt like I was crawling out of my skin. I went for three sessions, vented bile-black spleen (the poor woman barely got a word in) and actually felt much better.

I'm so sorry you're going through this. Memail me if you want to talk further. I'd be happy to help and to keep your confidence. (Sorry for the Russian novel. This is all very fresh for me and I have strong fucking feelings about people who are shitty to women having miscarriages.)
posted by Aquifer at 7:17 AM on March 1, 2015 [8 favorites]

To answer your last question, no, don't wait for this miscarriage to be over before seeking an RE. Much of the testing does not have to wait, and you'll feel better for having a plan in place as soon as possible. Not to mention that it is such a damn relief to go to appointments and not be sitting in a waiting room with happy pregnant women and magazines about babies. And to have a doctor whose job description is dealing with couples who've experienced loss and uncertainty that they'll ever be parents. OBs and midwives just don't. I think it's rare to find one with real compassion and understanding of how miscarriage feels.
posted by Kriesa at 7:21 AM on March 1, 2015 [1 favorite]

My mother had several miscarriages before she had me, at 35; at 38 she had my younger brother, and at 42 my youngest brother, and all of us turned out fine. Hang in there and don't let the bastards get you down; I hope things go well for you from now on.
posted by languagehat at 7:21 AM on March 1, 2015 [1 favorite]

I am so sorry you are going through this. I am currently waiting for my period after my second miscarriage in 5 months and today is my 35th birthday. So, if you want to chat, I am someone who gets it. I have a great OB/GYN who did most of the RPL bloodwork (clotting disorders, thyroid, diabetes), ordered a MRI to check for uterine anomalies and referred me to a RE. The RE is going to check my prolactin (will be fine, I have regular cycles), as well as my ovarian reserve just to probably reassure me that everything there is fine too. She also wants to check me and my husband's karyotypes to rule out balanced translocations (pretty rare, about 4% of RPL is caused by BT). So, that is everything that is backed by science. In all likelihood, we will fall into the "bad luck" group (50% of RPL is unexplained). Can I tell you how much I hate the phrase "bad luck"? Feels like my life is over and everyone says it is bad luck.

You don't have to wait for testing for clotting disorders and thyroid but if there is something unusual, they will wait and do repeat testing to confirm. You will have to wait to have imaging done on your uterus. I waited 2 weeks after my D&C to have the MRI and then meet with the RE. The RE didn't give me any real reassurance at our first meeting, just set up a testing plan. Ovarian reserve has to be tested on the 3rd day of your cycle so that has to wait.

With both of my miscarriages, they had me come back in a week for a repeat ultrasound. Unless there isn't a heartbeat at a time when there definitely should be (like, 7 weeks +), they will have you come back. At 5-6 weeks, even if you are sure about your dates, development can be off. But the limbo fucking sucks. My first miscarriage lasted longer than the pregnancy with waiting and testing and waiting. So, with the second one, I moved more decisively. It still lingers, though. They just take a long time (feels like eternity) to heal from.

As someone mentioned above, TLC has been shown to help improve pregnancy outcomes so it is important for you to feel cared for. I have started to see a therapist, I go to yoga 3 times a week, the OB/GYN I found is amazing. I am not sure about the RE at this point but I know I can rely on the OB for support if I need it. You need to surround yourself with supportive people and it doesn't sound like your friends get it. Fine, aggressively look for ways to care for yourself and don't talk to them about it.

In terms of next pregnancy, baby aspirin and progesterone are "can't hurt, might help" interventions. Midwives tend to want to be low intervention types and while that is fine for most people, it probably isn't ok for you and me at this point. Find an OB who will give you a progesterone prescription. My OB and RE both talked about it and will prescribe it even though the science isn't great. The old guidelines for RPL were that you had to wait for 3 miscarriages before they started testing but that is changing and testing after 2 is becoming more common. No one batted an eye when I asked for testing after 2 except for the fucking scheduler who told me they don't do testing after 2 because "it is just so common." What the hell does she know? It isn't common for ME!

Due to healing, testing and other timing, my husband and I are probably not going to be able to try again until April. While I want nothing more than to be pregnant with a healthy pregnancy, I think the delay will be ok so that I have time to heal and work through the pain, disappointment and fear before trying again. While the stats say you and I will be fine, my heart is broken and full of fear. I need to heal and you might too. My goal for now is aggressive self care and you might consider that too. Whatever that looks like to you.

As for age, my OB said not to get too caught up on 35. I have done other reading that has reinforced that as well (The Impatient Woman's Guide to Getting Pregnant has some reassuring information about getting pregnant after 35). Its so freaking hard not to worry about it, of course. But, I can't change my age. I am looking forward to having my ovarian reserve tested because I think I will end up feeling more calm about the time I have left to try for children. I am hoping for the ovaries of a 20 year old :)

I know many people who had 1 miscarriage but not really anyone who had 2. It makes me feel broken, freakish. I get it. I am happy to chat. I hope my rambling is helpful. Best wishes for healing and answers for you and your partner.
posted by rachums at 7:25 AM on March 1, 2015 [3 favorites]

This board has some great women and people who definitely get it.
posted by Yellow Silver Maple at 8:26 AM on March 1, 2015

I can't give you the details on causes, but I know a bunch of women who've gone through multiple miscarriages and then had healthy babies, even in their late 30s or early 40s (not that it will take you that long, but just to ease the worry about time a little). I know several of them were hugely frustrated because so often, the doctors don't even start looking for causes until one has miscarried a few times. I'm sorry you're going through this.
posted by LobsterMitten at 8:27 AM on March 1, 2015

And hey, if you have any nice success stories of babies after more than one loss, that'll be great.

My mom had three miscarriages between my sister and me.
posted by under_petticoat_rule at 9:05 AM on March 1, 2015

I am so sorry you're going through this and feel so dismissed! If it's at all helpful for your anger, consider that your friends, being pregnant and new moms, may be internally scared shitless about this and are externally responding with "no biggie" because anything else might be too uncomfortable to deal with. Weak, but not intentionally hurtful.

Two "success" stories for you...a good friend of mine had a premature baby with a lethal defect, followed by three miscarriages. Her OBGYN did a miscarriage panel and found a mutation in her MTHFR gene. She got pregnant with her first take-home baby after two or three cycles on anti-coagulants. (The only thing wrong with her delightful little boy is an addiction to Mickey Mouse Clubhouse, but that seems to be epidemic in today's preschool population.) She must have inherited the gene from her mother, who had at least four or five miscarriages herself, before and in-between three children who are now healthy adults.
posted by Cecilia Rose at 9:32 AM on March 1, 2015

I'm so sorry, this is so hard.

My grandma had 4 miscarriages in her life and 5 healthy babies. It happens.

You've potentially got a long road ahead of you. Google "TTC forum" (trying to conceive) and visit one of the many communities of women and their partners dealing with infertility. (Sorry, on mobile or would link.)

Call your gynecologist and ask for a referral to an infertility specialist. And/or ask your friends to ask their OB/GYNs for referrals.

When you find a doctor who specializes in this, they'll have a standard intake work up they do on both you and your partner.

The bright side (I know it's hard to see right now) is that fertility medicine has come a LONG way even in the past 20 years. There are a lot of options, depending on what the doctors find with their tests.

Check out what kind of fertility treatments your insurance covers and start saving every penny you can.

If you can afford it, also start looking for a therapist who specializes in infertility. That anger is real and not going anywhere, and you're gonna want to talk through it.
posted by amaire at 10:03 AM on March 1, 2015

I have lurked on Metafilter for years and finally registered just to answer your post.

I am so sorry for what you are experiencing.

Right now I think your anger may be a best friend. It may be the only force that is strong enough to give you the energy and focus to seek out and recognize the support that can actually help you in going forward. I wish I had stood up for myself more when the "best fertility doctor in my state" conducted extensive testing and sat down with me for three minutes to state that my "diagnosis" was "unexplained infertility." I was still recovering from a miscarriage very similar to your first and didn't have the presence of mind to say: "What does that mean? How does it affect what we do next?"

Your anger is a reminder that you have the right to ask for clarification. I am not sure you can get the exact answers you want, but you can find out why precise answers are difficult to come by. Working with a professional who takes 15 seconds to say, "I can see why you have concluded you are miscarrying, but I can't treat you for that until your blood tests confirm your pregnancy is not viable. That usually takes x number of days/week . . .," someone who does not wave off your concerns, can make an immense difference.

Consider opening up fully only to those who can empathize with your pain and respond to what you need now. These may not be friends who have children, or even women experiencing similar difficulties. (I found the online support groups full of acronyms and angels to be cloying and uncomfortable.) A favorite aunt who never had children, an acquaintance at work who liked me and took the time to listen, the two of my sisters who had zero difficulty sustaining a pregnancy -- these were the individuals who paid attention and responded to me in deeply compassionate and helpful ways. It may be that the best support comes from those who have consistently respected you as an individual rather than a reincarnation of their own problems. To this day, I take comfort in the memory of driving to my aunt's farmhouse two days after a D & C and collapsing into a recliner. When I woke up a few hours later, I was covered with a blanket and a cup of tea was on the side table. Maybe you can find relief from someone who accepts where you are and doesn't try to discount your intuition and concerns.

Of course I say more about what I did that helped me through the experience of being unable to sustain a pregnancy. But I hope a better response is to emphasize that your anger is telling you what you need, so don't apologize for it.
posted by GeorgieYeats at 10:39 AM on March 1, 2015 [4 favorites]

I'm so sorry you are experiencing this. My best friend had a son, then a miscarriage, then a daughter, then a miscarriage, then another son. Her doctor told her that many miscarriages happen without women ever having been aware they were pregnant in the first place, and it is the availability of modern pregnancy detection that has increased awareness (which he meant to sound comforting, though she was not comforted), but that in most cases, there's nothing "wrong" beyond that particular embryo not being viable. Finally, +1 for finding a reproductive endo now, as it can take a while to get an appointment.
posted by The Wrong Kind of Cheese at 11:37 AM on March 1, 2015 [1 favorite]

I'm really, really angry that I have to wait another week before they believe me

I went through that too and I feel for you so, so much. You are totally within your rights to feel fucking furious about having to go through this on top of the existing hell of miscarriage, and to want people to just believe you about your own experience through all this.

I found some consolation in a book called Coming to Term by Jon Cohen, which talks about the current scientific knowledge on miscarriage and particularly the chances of a successful pregnancy after losses (he and his wife had 4 consecutive miscarriages then a successful pregnancy, I believe).
posted by Catseye at 1:38 PM on March 1, 2015 [1 favorite]

Good luck. I'd second that you want to be seeing a fertility specialist, and there is a great deal of treatment and diagnosis that may be covered by insurance even if your policy does not officially cover infertility. Also if you email me your location I may have some advice and will definitely share some bellyaching stories.
posted by bq at 4:05 PM on March 1, 2015

Definitely see a Maternal Fetal Medicine specialist and/or reproductive endocrinologist. There are lots of things that they can test for at this point. Also, anecdotally, progesterone worked well for supporting a healthy early pregnancy for me. Best of luck (and science!) to you.
posted by judith at 4:30 PM on March 1, 2015

My mother and my partner's mother both had multiple miscarriages. There are some women in a Facebook group I'm a member of who have had more miscarriages than they've had children -- and many of them have very large families.

Best of luck to you and your partner.
posted by naturalog at 6:08 PM on March 1, 2015

Definitely get a Dr who doesn't make you feel dismissed or angry. That's a baseline.

Most women in my close family have had several miscarriages. Actually, many have had two 2nd trimester miscarriages, ie after 4 months.
The women in my family have had between 1 and 5 children, and the only one who had to go through IVF due to fertility problems etc, it was primarily a problem with her lovely, lovely husband.

So, that might sound unusual, especially the miscarriages at nearly 5 months (we mourned them like babies, I know their names in many cases), but statistically, it's still not. We are just part of the normal range. There is nothing particularly freakish or wrong or broken about my family. No one has been diagnosed with anything in particular. PCOS maybe, but most adult women who get pimples have PCOS, it's just that common. Miscarriage is just that common.
About 1 in 6 known pregnancies end in miscarriage. One in six! One for every 5 babies you know.
Of all pregnancies, not just known ones, only about half of them make it. But a lot of women don't notice if they skip a period, or have it a bit late. Being very aware of your ovulatory cycle can make it sadder in this way, because suddenly you are aware that it was a miscarriage, not just a late period, but fundamentally, nothing has changed.

The body is just usually very quick to reject any embryo that it thinks might have problems.
Sometimes the pain of a known miscarriage is because the body has hung onto an embryo that can't make it, too long, rather than rejecting it right away. Because some women's bodies are being more nurturing than usual. I know that doesn't help the outcome, but somehow that reframe helps me at times. Too nurturing, and too much of a good thing!
But that means when the right embryo comes along, it will probably be ok.

I've told some of my closest friends, in advance, that if/when I do get pregnant, I may not tell anyone til late. Really late. 5 months if I can get away with it (which I probably can - family history of 'stealth' pregnancies, also).
And I've let them know that that's not because I don't trust them, or feel close to them, but just because of my own feelings and family history. And that I may come to them with news that a pregnancy I didn't tell them about has ended, and still want support, and I already know they will be there for me.

Possibly it might help you to plan, not just for everything going right, but for it all going wrong. Who will you go to for support? Will your Dr be supportive if you have a miscarriage, rather than blithely assuring you it will be ok? If not, new Dr!

Again, it's entirely likely that there is nothing wrong with you, and you just drew the short straw twice. 1 in 6. Easy to roll the same dice twice. Neither of them were 2nd trimester miscarriages (it's still horrible, I know, but if I am going to lose a pregnancy, I would absolutely prefer it to be earlier, every damn time).

Rather than having one plan, have more than one plan. Have the "Everything goes smoothly" plan, the "I'm having a baby with disabilities" plan, the "I'm having/had a miscarriage, and need support" plan, with variations of "Symptoms indicate I've just been unlucky" plan, or the "This is the 3rd/4th miscarriage, and I'm going to go to the best reproductive specialists to see what I can do about it" plan.

Give yourself the advice that you would want in this situation, and ignore anything I've said that doesn't work for you.

Best wishes.
posted by Elysum at 11:21 PM on March 1, 2015

Are blogs OK? Sluiter Nation had multiple miscarriages and is about to have her third kid any day now. And Crowning Victoria had multiple miscarriages and just had her first baby in November.

Good luck to you and your family.
posted by jillithd at 7:20 AM on March 2, 2015 [1 favorite]

I have been lucky enough to not have a miscarriage, but I did have two pregnancies, both with various degrees of spotting. With the first, we also didn't find a heartbeat at first, but a week later, there it was and he's now 5, almost 6. With the second, more spotting and I went on progesterone. It made me wicked sick (or I just coincidentally had wicked morning sickness) and I don't know if it did anything really, but that little one will be turning three at the end of this month. So while I can't help on the miscarriage front, I can say that spotting doesn't always mean a miscarriage and it is possible that progesterone would help (though I'd talk with an actual OBGYN about that). Your midwife does not seem to be the best fit for you regardless. Don't face this stress with someone you don't feel is on your side. Good luck.
posted by katers890 at 8:31 AM on March 2, 2015

« Older How to get an article of clothing copied   |   Effective yet simple encryption for a laptop Newer »
This thread is closed to new comments.