Follistim, Gonal-F, and Insulin? – OH MY! (Updated)

I knew IVF required more than medication-assisted intercourse, but I didn’t realize I would encounter a preverbal buffet of medications and supplies! (And my insurance lied and said it was all covered, too!) I was told I would pay McDonald’s prices and got a bill for Ruth’s Crist! 

I’m so confused! I don’t even know what half this shit is for! Here is the list of prescriptions (“scripts”) sent to my pharmacy…


When they told me to call my pharmacy to ask about drug coverage they didn’t tell me to ask about anything other than HCG, FSH, and Progesterone. Wait! There’s more!


In case you’re wondering, yes! I am pretty sure that says Insulin near the bottom there. I’m not diabetic. Wtf??? 😳 (Update: I think it’s just an insulin syringe, not actual insulin.) The picture cut off the Sharps container, which I told them I already have from before, but I guess they forgot. I have two, actually, so I guess I’ll just tell the pharmacy when they call? 

Now, I took out that whole last s cation from before because it is all irrelevant now…

So, I got a call from my specialty pharmacy telling me I owed them roughly $680 before they would ship all that crap (pictured). I argued back that my out of pocket (OOP) for the entire year is only $462 away from being met so they need to check again. They told me to call my insurance. 

I call BCBS of Illinois and I get this Christa bitch who laughs at me and tells me the Lupron isn’t covered because it’s a compound and is $270, the progesterone isn’t covered the way it was ordered and it’s about $100. “To top it off” (she chuckled) “since the [OOP] isn’t met and non-covered items don’t count toward [OOP] you have to pay a $150 copay each for the FSH and HCG. That’s a grand total of roughy $675 for just the meds, when my OOP is {this} close to being met!!! I all but told Little Miss Chuckles to go fuck herself. 

My doctor has this amazing setup where he assigns you to your own nurse, coordinator, biller, and patient support specialist. You share them with other patients, but it’s nice knowing I have a “team”, and I can communicate with each of them directly through this app called eIVF_Mobile. The messaging feature has its quirks, but I work every day. I can’t spend all day on the phone. I have poor people relying on me to save the day! 

So, I sent my nurse (Jen F. – there are 3 or 4 Jen’s) a frantic message. I’m pretty sure the wetness from my tears could be felt through the computer screen! I apologized for freaking out, but explained that NO ONE from the clinic told me I even needed Lupron, or whatever the fuck Cetrotide is, or ever mentioned any of the meds would be compounds. I mentioned that I knew all along compounds weren’t covered, and that the FSH needs a prior authorization, or a step-down or medical statement of necessity (SMN) for approval. I reported that if someone had given adequate information ahead of time we never would have signed a payment agreement and would never EVER have given them almost $1500 up front before knowing the cost of meds. And then I apologized AGAIN. (I see a lot of apologies in my future.)

Now, it does seem like there were some missteps here – on everyone’s part- mine, the clinic, the pharmacies (I have two), and the insurance (especially Miss Chuckles), but I THINK it is resolved. I got an email from the nurse saying they found the Lupron in a “covered” form – a kit. I have no clue how much this will cost, but “covered” sounds good. Also, she got the pharmacy to get me a progesterone that’s only $15 (not $100). If nothing else we have saved about $85, and my OOP is DEFINITELY met after we pay for these meds!!!

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If I had $5.00

If I had $5.00 for every time someone said something hurtful to me about my infertility I could pay for the IVF and have some money left over for baby stuff (or a vacation if the IVF failed). I would start the collection process with my mother, who told me I am too old and that my bf doesn’t want a baby, once I finally gathered the courage to tell her. Yeah. I would charge her double. 
We didn’t tell people about the fertility treatments at first. For starters, it’s no one’s MF’ing business, but also, I wasn’t prepared for the pity, the ignorant comments, or the negative feedback. Some people mean well but just dig the knife in deeper and others, well, they’re just fucking rude. My mother was rude, and she made assumptions about my relationship with my bf that she had absolutely no right to make.  So, my fears were realized, and then I noticed something. It didn’t hurt as much as I thought it would. And if it didn’t hurt that bad coming from my own mother it likely wouldn’t hurt much at all coming from anyone else. It’s like getting your first tattoo and going straight for the face then realizing if you can get a tattoo on your face you can probably handle getting tattooed anywhere!
I can’t get $5.00 from every ignoramous who doesn’t know how to speak to infertile people. However, I CAN get $5.00 for every item sold in my fundraiser! This amazing chick that sells Lularoe has walked this path of infertility and heartache before me and she kindly offered to throw me an online pop-up fundraiser. We get $5.00 for every piece sold, and she only charges $5.00 shipping (in the continental US) no matter how many pieces someone orders. It won’t make up for every hurtful thing anyone has ever said to me, but it might offset some of the cost because this IVF stuff is NOT cheap!   Here is the link to the fundraiser: https://www.facebook.com/events/210079476178958/?ti=icl
Yes, I shamelessly plugged my fundraiser and whined about my insensitive, toxic mother in the same post, but let’s look at what really happened here… We finally told the world what we are doing, after more than a year of struggling on our own. Yes. I am a little worried about what some of our loved ones might say, but I am also glad to finally know we have some support. Every person who supports us erases two who don’t. Thanks for reading!

-CC

Sick…

9/16/17– UPDATE (sort of): 

G does not have leukemia. We don’t know exactly what IS wrong, but we do know (for now) it is not terminal. He has been diagnosed with ANA (anti-nuclear antibodies). Basically, G’s cells are attacking his own tissues, particularly his muscle tissues. He can’t build muscle to support his body structure and growth. He grows but his muscles don’t grow with him, and he can’t maintain or gain weight. He is so, so thin. It’s incredibly sad to watch. Of course they are concerned about his heart because it’s a muscle and muscle is the main tissue affected. He has been through more tests than any of my clients who all have permanent debilitating disabilities. He has been such a trooper through all of it, and we are talking 100’s of tubes of blood at this point. He did an EKG and stress test a couple of weeks ago. My mom said he got through it like it was nothing. 
Mom has been going along to all of his appointments, per his request. My sister hates her going because Mom is a nurse and tends to “hijack” the appointments. It really shouldn’t matter what my sister wants. Her very sick son wants his Nana with him as he goes through the scariest thing he will likely ever face in his life. There is nothing wrong with that. She needs to suck it up for her son, but alas, she doesn’t. This thing with G has definitely increased the strain on the relationship between my mother and sister, which wasn’t good to begin with. 

To understand their relationship you first need to understand something about my mother. Mom has OCD. A lot of people think that means she is a “neat freak” or germophobe. Not quite. In fact, hoarders have a form of OCD. You can do your own research on what Obsessive Cumpulsive Disorder really is, but let me say this – if you are the subject of one of my mother’s obsessions, you’re just screwed. That’s part of why I keep my distance. She just can’t deal with everything not having a “place”, and things must be “clean” – to her standards.  The “place” has to be specific but not tidy.  Her dishes and laundry are always done and put away. Her house is always clean, but it also harbors little cubbies of clutter, piles of “order”, organized chaos. You get my point. She’s not gross, just weird. My sister, however, can be a little gross. I hate saying that but it’s kind of true.  This, of course, makes my mom absolutely nuts. In response, my mom tries to guilt and bully my sister into cleaning her house – not just cleaning it but cleaning it to “Mom standards”.  And OF COURSE this means everything has its PLACE!!! And what batter way to be sure it gets done than to “help” my sister do it. By help, I mean show up unannounced and start bulldozing through your daughter’s house and shouting at her to help you, all the while telling her what a terrible mother she is. Do you understand why I live two towns away?
Side note: I hope you don’t think my family is some white trash, redneck, country idiots who belong on Dr. Phil. My mom (and maybe my sister too) has a mental illness. She can’t help it, and my sister can’t cope with it. 
Well, my sister finally had enough. She kicked my mom out of her house and stopped asking her to babysit. She had her boss change her work schedule so that Mom never needs to watch the boys for her, and she changed the locks on the house so Mom’s key no longer works. When Mom did show up one day and wouldn’t leave until my sister allowed her to “help” clean, my sister threatened to call the police and have her removed. My mom feels like she has lost her grandchildren, and my sister has most certainly lost her mother – whatever relationship they had left. But honestly, they’re both adults and I don’t give a shit how this affects them – not near as much as I know it affects G. Thank God his little brother is too young to understand, but G needs my mom. He wants her to be there for him, and their juvenile and irrational behavior is causing him to go without the support he needs. That’s the real tragedy here. I have tried mediating but it causes too much stress for me, and I am 9 weeks pregnant. I can’t afford to lose my only chance at having my own family because two adults can’t get their shit together for a child who desperately needs them to grow up. 

So, my dirty secret is out. My family is nuts, and dysfunctional. I moved away because I can’t deal, and at a time when my nephews and I REALLY need my mom, she’s too broken. She’s broken by the OCD, and by my sister’s inability to understand and accept her illness. Please send us some good vibes – especially G, his little brother, and my little Sweet Pea. 
Original Post:

I don’t talk about my family much, but there is one family member who is my absolute favorite soul, my nephew, G. I know all parents think their kid is the most unique, the cutest, the sweetest, etc. People think it’s weird I am so obsessed with G, but I absolutely adore him. I would help raise him and spend time with him every day for the rest of my life if I could. Our bond is special, and I can’t imagine anything bad (truly bad) happening to him. 

My family is complicated and it would take too much blogspace to bore you with it. However, to understand my relationship with G you probably need to know this… G spent the majority of his first 3 years living with me and my ex-husband. He called my in-laws “Grandma” and “Grandpa”. I helped raise him. I continued to care for him 3-4 days a week after my divorce, until the grandmother I lived with became terminally ill and eventually passed away. I moved two towns away and I only see G a few times a month now. It breaks my heart not seeing him. 

My mom called last night and told me G is sick. Honestly, that’s not unusual. He was born with GERD and was a sick baby. He also has Asperger’s Spectrum Disorder. (Basically, he is socially awkward and is really good at music and art.) My point is he always has some kind of ailment. This is not a cold or the flu. It’s something more. G has always been pretty pale, but lately his skin is almost transparent. He’s had a lot of stomach trouble. He doesn’t sleep much and he’s always tired. He’s cranky and whiny and he’s had some bruises that were taking a long time to heal. Off to the children’s hospital for labs. It took 6 weeks to get the results. As it turns out, he likely has one (or more) serious illness from a list of about 10 things that could be wrong with him. Most of them are treatable, and most likely survivable, (but all can be terminal). That doesn’t make it feel any better, especially when one of them is luekemia. 

I’m terrified. I’m angry, sad, and feeling quite helpless. I can’t imagine how my sister feels. I can’t understand why this is happening to a nine-year-old, particularly the one nine-year-old I love more than any human being on this planet. I spent all night crying. I cried myself to sleep. I keep praying over and over, “Please, not him. He can’t be sick.”

IVF: Hurry Up & Wait (more than 2 weeks)

I thought IVF was supposed to be the fast food version of getting pregnant. I was SO WRONG!
We finally have the right doctor, with the right staff, and all the stars are lining up for us. So, why am I not happy? Dr. A assigned us to a “coordinator” to guide us through this IVF stuff, which is great. No one bothered to guide us anywhere at the (old) RE’s office, except to the checkout window where we could pay our bill. I’m thrilled that we have an entire “team” – a coordinator, patient support specialist, nurse, embryologist, a billing specialist, and of course Dr. A – the best reproductive doctor in the Midwest. (Not one of the best – THE best.) 
We are signed up for the July cycle (which really means August), and now we just wait for my June period to start. With a whole team and step-by-step instructions, not to mention a minimum 50% chance of conception in the first try, I should be feeling pretty great. I don’t know why I feel so shitty. 
My partner got his semen analysis back several days ago, a few days before Mother’s Day. It was perfect. One less hurdle for us to climb, and he was ecstatic. I thought I would be too, but I cried instead. It was just a glaring reminder that the reason we are doing all of this – the reason we have suffered so much – is me. It’s my fault. Its been my defect all along, and continues to be me. I am broken, and I FEEL broken. It’s defeating and lonely. 
So, we got the green light to move forward and Dr. A said we could probably transfer in July, or that’s what I thought he said. He told me all we needed to do was confirm the plan with the billing department and we would move forward from there. I called the billing director. She said IF we could pay all our copays, meds, and out-of-pocket (OOP) expenses upfront she would forego the $2,000 deposit for us, since my deductible is met and my OOP is only a few hundred bucks from being met. GREAT! That’s more money to save toward maternity leave! Then, she said IF we did all of that we would be “squeezed in” for the July cycle and transfer in August. I thought Dr. A had said July transfer (not cycle), so I said something to the billing director. She said the June cycle for July transfer was already full. Ok. I am sure the doctor doesn’t mess with clerical BS so I let that one slide. July cycle then. Sigh… 
Then I learned this: The clinic we go to takes about 20 women per month for IVF cycling. Everyone placed in a particular cycle will go on birth control pills the month before and all 20 of them will have a period at the same time. (First of all, 20 women on their period at-the-same-time!!!) Also, that period will be during the second-to-last week of the month, not the beginning of the month. Therefore, your transfer doesn’t actually happen until the first week of the following month. (This is why the June cycle would have meant a July transfer (early July). Being on the July cycle means two months before we transfer (the first week of August), which happens to be our anniversary week. That’s all fine, except it’s not. 
We bought tickets MONTHS ago for a concert that we will most likely have to miss, scheduled for the day before our anniversary. If we transfer on/before August 1st we will have to skip the concert because I’ll be in bed rest for at least a day or two. We won’t know our exact transfer date until about a week before the transfer, however we do know it will be sometime between Aug. 1-5. 
 What this all means is we are waiting twice as long as we originally thought to cycle, and a week longer than THAT to transfer, AND we might lose a LOT of money (a lot to me anyway) to give up tickets to a concert I have wanted to see for about a decade. Not to mention I have to go through THREE periods (May, June, & July) before we transfer. Talk about BS!
Before you get all judgey, please know that I am totally aware of how childish and selfish I sound right now. I’ve waited 11 years to get to this place in my life and here I am whining over a few extra weeks and a goddamned concert. It’s dumb, and pathetic, and I feel like a total shit, which of course makes me feel even worse. I just can’t help it. I can’t help but be sad that we aren’t transferring in June like we originally hoped. (Even July would have been nice.) I’m scared I am jinxing us and none of our embryos will be worth keeping in July and it will be all my fault because I’m being a whiny little bitch. And even though it’s so spoiled of me to complain, I am sad our anniversary plans might be screwed and one of my bucket list wishes may never come true because I might be on bed rest the day of the concert. I’m just sad, and scared, and waiting, waiting, waiting. I have waited 11 YEARS!!! Now, I have to wait two more months, and it’s making me crazy – just absolutely nuts. 
I feel really crappy about myself, truth be told. I feel bad about being infertile, about being selfish and whiny, and sad when I should be optimistic. I am just feeling shitty, and it sucks. I should be thankful. I should be happy. I shouldn’t be sad, but I just can’t help it. I am scared, and I feel kind of alone, and I have let this totally consume my life. I just don’t know how to feel any other way. I hope our first cycle works (even though our chances are kind of slim – 50%). I mean, our chances are 25% better than anyone trying naturally so there’s that. I just hope this works and that it will make me feel better. I think it’s about the only thing that will make me feel better at this point. Nothing else will fix me. I guess getting my hopes up for a June or July transfer didn’t help. Sigh… I guess I’ll just shut up and wait now. What choice do I have?

A TTC Belly Flop: Telling the family, sort of

I can’t sleep. Perhaps it’s because I finally attempted (& failed) to tell our family we are TTC, but my mother doesn’t support our decision.  It could simply be the killer cramps I am having, or the migraine I am just barely recovering from. OR, maybe it’s all of the above and more. 
We decided a long time ago that our family did not need to be involved in our TTC journey, at least not heavily, and certainly not early on. His reasoning is that it’s none of their goddamn business, and I guess I feel that way a little too. I just don’t want to hear their opinions about it. I’m 36 and he is 40. A lot of people believe we are too old to start a family. Some might believe we aren’t financially prepared, or maybe even that we aren’t cut out to be parents. 
Since we are starting IVF next month I wanted to tell my mom. We don’t have the best relationship but this process is extremely emotional and I thought it would help to have her support. It took a LOT of courage for me to bring it up with her. I tried to approach the subject gently by saying that we have been seeing a specialist just to explore the possibility of having a baby. She looked me dead in the eye and told me I am too old, and she said she doesn’t even think my boyfriend wants a baby, as if she knows anything about what he would want. To really make it clear how she feels she said it must be nice to have insurance and to be able to afford “unnecessary treatments”. She claims she can’t even afford insurance or get a Pap smear when she has been a nurse for over 30 years. Just like that, in a way only my mother can, she made me feel like shit and turned my situation into something all about her in one fell swoop. 
Here is the problem with ALL of that bullshit… A) I don’t see what we are doing as “unnecessary”. That is an incredibly insensitive and subjective opinion, and I CAN’T “afford” it, by the way. We are making MAJOR sacrifices to “afford” it! B) My employer pays my insurance and if she wanted that for herself she should have found a job where they would do the same for her. C) There are lots of doctors who will offer a discount to someone without insurance (like her) so she can get her annual exams, and she makes over $100k/year. There’s no reason whatsoever she can’t afford it. She CHOOSES to forego her annual exams because she CHOOSES to spend her money elsewhere, and she DOESN’T make the sacrifice to pay for it; Therefore, her Pap smear is not as important to her as having a baby is to me! SO THERE!!!… I didn’t say all of that to her. I wanted to, but I guess a small part of me prays she could still possibly support me, perhaps if we can have a baby she will see it was all worth it. Maybe she could even somehow be happy for me someday. If none of that, maybe I can prove her wrong. As spiteful as it may seem, I think living my life the way I want despite her nasty, hateful, insensitive position would be far more rewarding than having her support. 
There are just so many things that go through my head – sometimes hundreds of times a day… What if we run out of money? What if (God forbid) this famous doctor can’t get us preggers – even though he boasts a 90% success rate? How many cycles could it take? How will I tell the rest of my family? How will they react? What about HIS family? They’re SO different from mine, and that is somehow a bad thing, maybe, sort of… What if my mom is right? What if I am a shitty parent? What if I have another miscarriage? What if…
It would be REALLY REALLY GREAT to be able to go to my mother and tell her all of this, ask her what she thinks, and have her hug me and say it will be alright. It would be so wonderful to be able to trust my mother, or sister, or even my dad with my feelings – my deepest, most vulnerable feelings, but I can’t. It’s incredibly hurtful. We truly are on our own. It is scary, and frustrating, and lonely. 
So on nights like tonight, when I lie here feeling as if my insides are getting ripped out and am unable to stay still because I cannot get comfortable, and all the thoughts torture me… all I can do is hope and beg the universe for a few hours of sleep and relief. I need to go to work tomorrow. I can’t afford to miss work for my period when I need to be earning money for those “affordable” and “unnecessary” fertility treatments. I need to be saving my sick days for a possible maternity leave. I need NOT to be stressing over people who can’t be supportive. Extra stress just makes getting and staying pregnant even HARDER!!! It’s just so… consuming. 
P.S. – PLEASE excuse the pity party. Hopefully getting it all out will help me get some sleep. Thank you for taking the time to read.

Myths In Baby-Making:What Your Doctors Aren’t Telling You

If you are trying to get pregnant you NEED to read this!!! I’ve been struggling with infertility for going on eleven years, and believe me when I tell you it has been HELL. I don’t want ANYONE to suffer the way I have. That’s why I believe EVERYONE seeking or undergoing fertility treatments should read this FIRST! I had to learn the hard way but you don’t have to. I beg you, PLEASE learn from my mistakes!!!

After 10+ years, a miscarriage (MC) a divorce, three more miscarriages, three OB’s, a reproductive endocrinologist (RE) a surgery, a dermatologist, an immunologist, and now an embryologist I feel like I SHOULD know everything there is to know about infertility and how it’s treated. I am not an expert! Trust me, I did NOT set out to be an expert on any of this and I never will be. I am still learning every day. Like you, I just wanted to get pregnant and have a baby like everyone else, but I wasn’t lucky, and I didn’t know enough to get the right treatment. I believed a LOT of lies and wasted a lot of time. The crazy thing is, most of those lies I was hearing came from DOCTORS!!! Okay, some were midwives, PA’s, NP’s, the Internet etc. but they were MOSTLY medical professionals, and they were LYING TO ME!!!  

I have compiled a list of myths, and I am sure most of you have heard some (or all) of these. I want to pose a disclaimer at this point. ALL of my miscarriages were early term, at or before 12 weeks, and we are now pursuing IVF. Therefore, most of what I am sharing relates to my personal experiences with early-term MC’s and just starting IVF. Your experience is undoubtedly different from mine in at least a few ways. I don’t claim to be an expert on what is true for everyone, but through experience I have learned that most of this is true for most people. So, here you have it, my personal “Myths List”…

1. The male partner does not always need to be tested. WRONG!!! There is at least a 50% chance that your embryo will die because of “bad sperm”. The ONLY time you get a good embryo is if you get a good sperm AND a good egg AND that good sperm gets to the good egg. That makes your chances of getting pregnant with a healthy (“good”) embryo less than 25%, and those chances do NOT get better or worse with each cycle.  

2. If you collect a semen sample at home for IVF you only have 20 minutes to get it to the testing facility. According to my embryologist (Dr. A) you can actually have up to 2 hours. Now, this is specific to IVF. It might be different for other treatments or for other diagnostic purposes, but for our initial SA before starting IVF we have been told we have 2 hours to get it to the lab.

3. You cannot use lube when collecting a sperm sample. Again, this is specifically for IVF, but yes you can. Our embryologist actually recommended we use a sperm-friendly lube (like Preseed) to make the process more comfortable if we felt we needed lube. He says it simply does not matter if we want to use lube. (By the way, I am in no way sponsoring Preseed. That’s just what we use at home. There are other “sperm-friendly” or “conception-friendly” lubricants. Just do your research.)

4. You can get a definitive egg count using blood tests (AMH levels). Wrong again. AMH is never definitive. Don’t believe me? Have your AMH tested this month, and then do it again on the exact same cycle day the next month. They’ll be different, even if just slightly. Even if you only lose ONE egg that month, I’ll bet your levels will show a decent difference. That’s because these tests aren’t exact. They are flawed. There is no way to get an EXACT egg count – NONE. 

5. Multiple miscarriages with more than one male partner means the miscarriages are the “woman’s fault”. Well, this is just beyond ignorant, but my dumb ass believed it – for YEARS. I now know that even a good semen analysis doesn’t mean the male isn’t contributing to fertility issues. I’ve had 4 miscarriages with three partners – my ex husband, my ex boyfriend, and 2 with my current boyfriend of almost 5 years. Guess what? Absolutely NONE of my labs or diagnostics indicate that the miscarriages were “my fault”, but I had doctors (reproductive endocrinologists even) telling me it was ALL ME, to the point that they told me my partner didn’t even need to do a semen analysis because it was “most likely” my problem, not his. (Refer back to Myth # 1.) 

6. Immunological issues (auto-immune diseases, immune deficiencies, overactive immune systems, etc.) are often direct causes of miscarriages. FALSE! In fact, they are most likely NEVER related to miscarriages. How do I know this? Dr. A studied immunology for over a decade, convinced women’s immune systems were attacking embryos. After all those years of studying how immunology related to infertility and miscarriage he realized it doesn’t – not in the slightest, at least not 99.9% of the time.

7. Most miscarriages are causes by either a defective egg, a defective sperm, or both. Not exactly. This is a half-truth. Dr. A (who has developed and is actually working on developing new diagnostics and treatments for infertility and has people traveling hundreds of miles to see him), says it’s the embryo that’s defective, not necessarily the egg or the sperm. An embryo is either viable or it’s not, and that can be determined in the first five weeks, which brings me to the next myth.

8.  An OB can’t see you until you’re 8 weeks pregnant (8 weeks after the first day of your most recent period) because pregnancy isn’t even really detectible until then. Yes they can see you before 8 weeks if they want to, and yes pregnancy is detectible. In fact, if they would start monitoring you as soon as possible (a lot of people find out they’re pregnant at 3-4 weeks when they miss a period), they would be able to tell you if the embryo is viable or not long before 8 weeks. If you’re doing timed intercourse, they could start ultrasounds almost right away to monitor for a sack. In other words, they could monitor your sack via ultrasound and take your HCG blood levels and WARN you of an impending miscarriage, instead of letting you just figure it out for yourself. Also, giving you meds (progesterone, aspirin, etc.) to “prevent” miscarriage means they are legitimately concerned you will miscarry, which means you probably will, and they probably KNOW you will miscarry and are giving you false hope. The meds won’t stop it from happening. In fact, 8 weeks is WAY too late to do anything to help you, except prescribe pain medications. Again, research in the UK shows that taking these meds never prevents miscarriage, and there is no such thing as “stopping” a miscarriage.

9. The best thing to do if you know you’re miscarrying – just get a D&C and get it over with. My embryologist studied miscarriages for years. That’s how he got into embryology. One of the first things he learned was that doctors weren’t studying the miscarried embryos to see why or how they miscarried or what was wrong with the embryos. To learn more, he retrieved the miscarried embryos and studied them. Your doctors could (and probably should) be studying your miscarried embryos instead of just digging them out of you and throwing them away. They’re useful. In fact, they might hold all sorts of secrets that you’re throwing way because someone is telling you that is what you should do. The best way to understand why you miscarried is to study the miscarried embryo, and the only people that generally do this are embryologists. (“Embryology literally means “the study of embryos”!) Your midwife, OB, NP, and even an RE (reproductive endocrinologist) won’t likely do this, but an embryologist most likely will, especially if you ask them to.

10. A pregnancy can be “saved” with meds or bed rest. I’ve been told to do this, and have done it hoping to save a pregnancy. I’ve taken bed rest in the first trimester to save a pregnancy that was already lost. Aspirin can be helpful if you have a clotting disorder, and progesterone can help if you have a hormone disorder, but without being diagnosed with those conditions, you aren’t stopping anything from happening with meds. Early miscarriage is almost always an embryonic defect of some sort, and that defect existed at conception in 99.9% of cases. It was destined to miscarry from Day 1 and there was never anything you could have done about it (in early miscarriage). 

11. Issues like endometriosis, PCOS, or a uterine septum (or a septate uterus) will always cause a miscarriage or difficulty getting pregnant. This one is kind of specific to my particular situation but might also apply to you. How many of you suffer from something like PCOS or endometriosis? How many of you have been told that’s why you can’t get pregnant or stay pregnant? Again, this is only half true. In SOME cases, moderate or severe endo, PCOS, or a uterine septum (or other issues) can cause infertility, miscarriage, or both. Guess what? There are LOTS of people with reproductive abnormalities in their bodies who DO conceive and carry to term. There are also people with “normal” parts who can’t get pregnant or have suffered miscarriages. These things are subjective because they’re specific to each couple and each individual cycle, pregnancy, or embryo. Also, it is not always necessary to “fix” these issues to get pregnant or carry either.    

Note: I had a uterine septum pop up in an ultrasound after my last MC. First of all, this is a congenital defect so I’ve had it since birth and NO ONE noticed it, not during the first three miscarriages, and not in 10 years of struggling and going to all those doctors. My midwife caught it and referred me to the RE (reproductive endocrinologist) to have it evaluated. He did a saline sonogram (sonohysterogray or SIS) to evaluate the seriousness of the septum and to determine if it was contributing to my infertility/miscarriages. He insisted surgery was needed, and when he did the surgery he also removed Stage I endo and a very small, internal uterine fibroid. I was told this was likely the ONLY thing causing all my issues, and it could have been fixed after my very first miscarriage almost 7 years ago. I was devastated to know my issues could have been fixed so long ago. Well, guess what? Dr. A could tell, just by looking at my surgical records and all the measurements of the endo, the septum, and the fibroid, that I didn’t likely need that surgery after all. I almost want to post the description of my surgery from my medical record just so you can be as traumatized as I was when I read it. It’s graphic and was most likely unnecessary. Needless to say, I’m pretty upset about that too. As long as my insurance doesn’t find out and try to back bill me the $18k+ they paid for it I guess it’s water under the bridge and I just shouldn’t complain. I did lose about 1/2 a pound after they cut everything out, after all.

12. All reproductive specialists are created equal. I think it goes without saying this is a huge lie, but your OB might not tell you this. Hell, they might not even know! S/he will probably give you a list of specialists and just leave it to you to choose who you go to with very little direction or help from them. I live in a rural area where there might only be one or two practitioners specializing in any given field within driving distance of me. I am aware some areas are worse than mine. I am, at least, positioned within three hours of Indianapolis and a little over an hour from Saint Louis. Some people are HOURS away from the nearest major city. I’ve read stories of couples who have moved just to be closer to their RE’s office. I am certainly glad it didn’t come to that for us because that would have been one of the worst decisions we ever made! My point is, do your research, and if you don’t like the options given to you, ask for more options and consider the investment you’re willing to make if you need to travel very far from home. I am driving two hours one-way to see Dr. A., and for the first few months it will be 4-5 times a month. The cost is enough, but there will be missed work, wear/tear on my car, and the cost of gas, copays, and food.

My fourth miscarriage occurred a year ago this week. It started with some severe abdominal pain on the right side. It felt like I was being stabbed. I went to my local urgent care. They asked if I thought I could be pregnant. I told them I wasn’t on any kind of birth control but my symptoms didn’t point to pregnant, and I had JUST been on my period about 12 days before, so they didn’t do a pregnancy test. They had me pee in a cup, but it was to test for UTI or kidney infection. They also drew blood and still came up empty-handed, so they decided it could be appendicitis and scheduled me for a CT with contrast (dye) and they prescribed Norco for the pain. I went the next day for an emergency CT. I thought I might die during the CT I was in SO MUCH pain! Later that afternoon I got a call from one of the nurse practitioners at the urgent care telling me all they found was some “fluid on my abdomen” and they thought it might be in my uterus so they were referring me to the area’s best OB. I actually saw the midwife, but I was fine with it. She delivered some of my friends’ and family members’ babies and she’s SO gentle, laid back, and calm. That’s when I found out I was pregnant. I was scared to death. I knew instantly that it would miscarry. I just KNEW it would, and it did about a week later. They did an ultrasound to verify the miscarriage and that’s when they noticed the septum in my uterus and decided I needed to see an RE.

I had asked around before about reproductive specialists. A few people I knew highly recommended this guy in Evansville, Indiana, which is about 90 minutes from my house. One friend in particular absolutely swore by him, called him a “miracle worker”. When the midwife said she would like to refer me to him I was comfortable with the decision. We met for the consultation and no red flags went up (except that he seemed kind of…old, and he looks kind of like Christopher Lloyd.). I’m not promoting age discrimination, BUT a lot of older doctors who have been practicing for a really long time are fairly set in their ways. They believe what they WANT to believe, and they don’t really take much initiative when it comes to researching or understanding new methods. Long story short, the RE was set in his ways. To make for the perfect storm, his staff SUCKS!!! I must mention I worked as a med tech and medical office staff for 15 years before I got into human services two years ago. I know how medical offices work. Their staff is generally under-trained in one area or another (or all of them), they’re almost always under-paid, and these doctors NEVER have a large enough staff. It’s amazing the difference just ONE more staff member could make, but good luck convincing a doctor of that. I don’t want to relive the nightmare. I’ll just tell you there were COUNTLESS mistakes made in my treatment, especially following my surgery. We had issues from delays in scheduling, to meds not getting ordered (or ordered at the wrong pharmacy), to me receiving a lab order with another patient’s name on it. The last straw was when they had me come in for a last-minute ultrasound so I could start some new meds and then they royally screwed up ordering the meds. I didn’t get the meds, and then they STILL billed me for the ultrasound, even though the whole thing was THEIR fault. At that point we were done. I was beyond livid, inconsolable, and we were BROKE. We maxed out all our credit cards. We had been driving 180+ miles round trip three times a month, taking three days a month off work, paying for copays and medications, and we were just absolutely spent! I wanted to give up, but my boyfriend didn’t, and I am glad he reminded me of why we got into all of this to begin with. It’s not about the money or the struggle. It’s about our dream of becoming parents and having that opportunity to snuggle a baby of our own, to love them unconditionally and endlessly, to have a reason to live much bigger than ourselves.

I am still very hurt by how things turned out with that RE. I won’t say his name or the name of his clinic. There is more than one RE in Evansville. You can guess who it is if you want, but I am not out to destroy someone’s reputation. Some of his patients absolutely adore him, and honestly, he’s a kind, gentle man. He was just a bad fit for us. 

My goal is to educate other people so they don’t have to go through everything we’ve suffered. Do your research, ask the hard questions, and NEVER take “no” for an answer. If you ask your doctor a question and they don’t know the answer, they should be willing to find the right answer for you. If s/he can’t or won’t do that for you, they don’t deserve to be your doctor – plain and simple. The FIRST time your doctor or their staff screws up, you need to make them aware of it, and make it very clear that you can’t afford to give them too many second chances. You cannot afford to waste your time and money on doctors and staff who aren’t equipped to help you. Don’t let them treat you like just another number. Don’t let them make you believe that you can’t get the help you need somewhere else. I’ll bet you can, and I’ll bet you won’t let the next doctor get away with that crap!  

My sincerest hope is that you will NEVER have a doctor treat you the way I was treated. Whether it was intentional or not, I was lied to, disregarded, neglected, disrespected, and violated. They almost made me give up on the one thing I have always wanted more than anything in the world, and that is just not okay. They were more worried about shuffling as many patients as they could through their offices, like cattle, than actually taking care of us. Fertility is a profitable business, folks! Taking a few months to research our options would have been worth it. I would have preferred it to wasting the last year of our lives.  

PLEASE, think twice and act once. Don’t be afraid to be assertive, or even aggressive. Just because someone has a degree, some credentials, and a few extra letters after his/her name does NOT mean they know more than you about what is best for you. The moral of the story is, don’t believe everything you hear.

Links:

Female Fertility Facts – http://www.mcrmfertility.com/learning-center/female-fertility-facts/

Myths – http://www.mcrmfertility.com/learning-center/myth-of-unexplained-infertility/

Preseed – http://www.firstresponse.com/en/Products/Lubricants/Fertility-Friendly-Lubricant?gclid=CKCej-6SyNMCFYI7gQodGy8LKA