IVF Side Note: The right one is Randy!

YOU CAN ACTUALLY PULL AN OVARY LIGAMENT, Y’ALL!!! You don’t even have to be pregnant! It could be caused by a big bladder! This is NO 💩! My right one has been pulled, and apparently the ovary it’s supposed to be supporting is named Randy. We’ll get to that, but first…

If it’s going to happen to anyone it will happen to me. I have said this more times than I want to admit. I’ve had some of the strangest injuries and odd luck of anyone I know. I don’t say “bad” luck because it’s not all bad. It’s just weird. IVF has proven no different than anything else in my life. Odd things just keep happening to me!
My stim meds made me absolutely exhausted. Apparently this does happen but not often, like 15% of the time. Go figure it happens to me. I was a zombie until two days after retrieval. 
My bladder is huge, and I have been told this multiple times (which is weird enough). Apparently, it’s SO big that it pushes against my right ovary. The right one happens to be the ovary that held like 2/3 of the eggs they retrieved so it’s pretty damn sore anyway. I retrieved 21 eggs, which is apparently more than average. (Most retrievals are below 20 is what I am told.) Twelve of the 21 eggs came from the right ovary. NOW that bloated, inflamed right ovary has the weight of my bladder pushing on it too. ALSO, the ovary itself is pretty heavy at the moment, which only adds to the weight straining against my ovarian ligament – the ligament which attaches to my pelvic wall and suspends my right ovary. (It keeps my ovary where it’s supposed to be, folks!) Well, all the extra weight straining against the ligament somehow resulted in a pulled ovarian ligament. Seriously? 🙄 Yes, seriously. 
The pain is insane! Yesterday we made a special trip (2 hours one way) to our clinic because we thought maybe I was hyper-stimulated or my bladder was having spasms or something. On a 1-10 pain scale it was an 8!!! I was worried my appendix was rupturing! That’s how we found out about the ligament.  What’s the cure? Nothing. There’s nothing to do except take Tylenol every 4-5 hours and take it as easy as possible. That’s it. There is no fix. 
Luckily, this didn’t keep us from transferring today! We transferred two perfect embryos this morning and it went off without a hitch. SOMEHOW, while the doc was moving things around down there he managed to relieve some of the strain on my ligament and the pain eased up quite a bit. I’m at a 2-3 on the pain scale now, but I am sure the Tylenol is doing something too. It just kind of feels, now, like PMS, but who knew a tiny string of tissue holding a little extra weight could make me shake and sweat from pain? Certainly not me. It hurt so bad!!! I can’t even find any info online about this EVER happening to anyone else. The doc said again that it’s rare but does happen. He says this to ME a lot. I am honestly NOT surprised at all. 
Another funny thing that isn’t necessarily rare but hilarious… The anesthesia made me really loopy and I apparently told the nurse at retrieval that I was naming my ovaries. The right one is Randy and the left one is Lucinda, supposedly. I reported that Randy is a real bitch and I was cussing her (I assume all ovaries are female) quite a bit following retrieval. I do NOT remember ANY of this at ALL, but the nurse asked me if Randy was being a pain again today when I got there for transfer. I must have looked confused because that’s when she told me the story of my drug-induced ovary naming session. In retrospect maybe Randy should be spelled with an “I” at the end (Randi)? Does that make it more feminine? Anyway, word to the wise, just don’t talk after they give you the anesthesia. If you’re like me the stim meds have made you feel like shit for weeks, the birth control didn’t stop your period but rather made you spot and cramp for six weeks, and the post-op anesthesia hangover is the BEST you have felt in almost two months. You’ll be tempted to chat it up but don’t! You might start naming and cussing at your ovaries.  Or, if you do feel the need to speak, make sure no one is recording you! You do NOT want to be one of those post-anesthesia videos that goes viral on social media! 

That’s all I have for now. Our cable and Internet is down for repairs so I guess I’ll take a nap. Much love!! ✌🏻💚

IVF: The Raw Truth– Episode II, “Injections”

I have decided IVF is somewhat similar to pregnancy. The meds make you bloated, tired, and nauseous. Also, after it’s over you forget just how hard it was and say things like, “Oh, it really wasn’t that bad.” That’s bullshit and anyone who says anything like that is either delusional or lying. I feel like I’ve had the flu for two and a half weeks. I am dehydrated. I get painful muscle cramps and spasms and no amount of potassium or water is helping. Everything hurts and look I like a heroin addict. It’s not easy! I used to think IVF was the cheater’s way out. It is most definitely NOT for the weak!
If you’re doing IVF there is just NO WAY to avoid harsh medications and needles – a lot of them. We tried other fertility treatments for a year before moving to IVF so I lost count of how many times I’ve been stuck with a needle throughout this journey. I’ve given over 20 tubes of blood in the last year, but a nurse drawing labs and stabbing YOURSELF are two totally different things. 
Growing up I was Hypoglycemic, meaning I had chronically low blood sugar. I checked my sugar every day by sticking myself with (basically) a thumbtack to check my sugar. I also worked as a medical clerk and tech for over a decade. I saw minor surgeries, gave injections, and even assisted with epidurals and spinal taps. You would think giving myself a shot would be nothing, but it’s different when you’re doing it to yourself. I know some women have their partners do it, but honestly that sends my anxiety to a whole new level. Trusting someone doesn’t mean you believe they know how to stick you with a needle without killing you. I can feel what’s going on with my body. He can’t. Therefore, I do the shots and he assists. 
I’m hoping I can help others by offering up some lessons I have learned through this process…
BASIC TIPS–

*Open all your supplies ahead of time. You’ll need gauze, bandaids, needles, syringes, alcohol swabs, and the medication(s). If the meds need mixed have them all mixed & drawn up, ready to go, a few minutes before you give the injections. 

*Be sure to bleed the needles to avoid air bubbles. 

*Sometimes holding an ice pack on the area for a minute or two beforehand helps. Ice packs and/or heating pads sometimes help after, too. 

*Once you know which ones hurt the most, do them last. For me, Menopur has been the worst so far but everyone is different. 

*Have someone there to help you. It’s not hard to do it alone, but it definitely helps to have moral support and a helping hand. 

*Ask your clinic for videos on how to do the injections. My clinic has videos on their website. I have them saved to my favorites on my phone browser and I sometimes watch the videos while I am doing my shots. 

*Even if you don’t bleed, use the little round bandaids. They mark where you’ve already given shots so you know where not to stick the next time. I rotate day-to-day from right to left. Once I have done the same side twice, I take the older bandaids off and leave the newer ones on. Right now I have six bandaids marking the shots I have done for the last two days. 


Here is what I can tell you about my experience with the shots so far…

I am not sure which one(s) it is, but I am VERY dehydrated! I drink nothing but water – CONSTANTLY and I’m still thirsty. When they draw labs my veins roll (another sign of dehydration). DRINK AS MUCH WATER AS YOU CAN! The average person is supposed to drink 64 oz of water a day, minimum. I’ve been drinking double that and I’m still kind of dry and sometimes get muscle cramps (Charlie horses). Also (disclaimer) ALL of my injections up through embryo transfer will be Sub-Q/subcutaneous (under the skin), even my trigger shots (HCG/Lupron). Some people will do SOME inner-muscular shots and some sub-Q shots. Your protocol will definitely be at least slightly different from mine so I’ll try not to be too specific. This is just MY experience. Everyone is different. 
FOLLISTIM–

Follistim and Gonal-F are the same thing. No one explained this to me at first and once I found out I felt totally stupid. I’m using Follistim. This is the easiest injection to give of all the ones I have done so far (in my opinion). The needle is very thin and short, and the medication basically draws itself up. You dial a little knob to your dose, do the stick, and then press a button/plunger until the dial goes down to zero. The really cool thing is if there isn’t enough medication in the vial you’re using, the plunger will stop at the remaining dose you need when the vial runs out. You change the cartridge(vial) and needle and just stick and hold the button again until you get zero. 
Now, that’s not to say the medication is the easiest to handle. Follistim is tolerable but it definitely burns. I’ve learned to set it out for 3-4 minutes to let it warm up a bit before I use it. Also, after you bleed the needle (get the little drop at the top of the needle to avoid air bubbles), it helps to shake the drop off before sticking. However, no matter what I do, it still burns for at least 20-30 minutes after I take a Follistim injection. For me the burn spreads all throughout my entire abdomen. Some say Follistim doesn’t bother them at all. Everyone is different. 
CETROTIDE–

I didn’t start Cetrotide until about a week before we expect(ed) the egg retrieval to take place. The hardest thing about Cetrotide is dosing. It comes with a small syringe full of mixing solution, attached to a huge mixing needle. I squirt the solution into a vial of Cetrotide powder, and swirl until mixed. That now-mixed vial is a full dose, but I take a half dose, and the syringe that came with the liquid in it is not marked at all for dosing. I re-cap the mixing needle, remove it from the syringe, and attach it to a new syringe which does have measurements marked. Then I draw up the dose. After the dose is drawn I change to an administration needle, which is pretty small but longer than the Follistim needle), get the air bubbles out of (bleed) the needle, and give the shot. I don’t feel anything at all. It doesn’t seem like the Cetrotide has any immediate side effects. However, 20-30 mins after I give it I usually get a headache and start feeling EXTREMELY tired. My doctor says that happens to some people but it isn’t common. Also, I sometimes get a little red splotch around the injection site, and it itches for a few minutes. 
MENOPUR–

I started taking Menopur one day before I started the Cetrotide. This one has had the worst side effects for me so far. Administration is pretty much identical to Cetrotide- same size needle too. Menopur hurts pretty bad as soon as it goes in, and the pain seems to spread and get worse over a the next 30-60 minutes. I do Menopur injections at night and the burning sometimes keeps me from getting to sleep. I take Tylenol to help ease the burning. It basically feels like my abs and lower back are cramping badly, and I have that scalding hot water on my skin feeling I mentioned in a previous post. The Menopur, for me, hurts bad at injection, for a long time after, and seems to make me feel bloated and crabby. It’s like PMS on steroids. I hate it. I am hoping I never have to use Menopur again, but as is the common theme, everyone is different. 
TRIGGER SHOTS–

We are using a dual trigger – HCG (Novarel) and Lueprolide (Lupron). I did them this morning. They were Sub-Q. In the past I have done only HCG triggers and they were inner-muscular. Honestly, Sub-Q was easier. It burned a lot less and didn’t make me achy after. I had to do it 36 hours before retrieval so I was up at 5am today. I did the shots and went back to bed for an hour before getting up for work. It’s almost two hours later and I feel fine. I didn’t have any of the cycle meds last night (no shots), only an antibiotic. I have to admit I feel pretty good this morning – for the first time in a couple of weeks. Other than a Charlie-horse in my leg when I first woke up I have no body pain, and my headache is barely noticeable. 
Overall, it’s all tolerable, especially if this works. I did walk around feeling like I had the Flu for two weeks, basically, but I lived with it. My belly is bruised, sore, and bloated. I am tired. My whole body aches off and on, and I have a never-ending mild-to-moderate headache. I don’t sleep well, am sometimes nauseous, and I am never comfortable. BUT I am blessed to be able to walk this path. Many cannot. We can BARELY afford it, even with insurance, and we also have help from family and friends. So, I will not complain. I want people to know what it’s like, but I never want my future child to think it wasn’t worth it. It is worth it in every single way. If we had the money to do 100 cycles we would. We would just keep on trying until it works, but hopefully we don’t have to even worry about that. With every shot, blood test, and ultrasound I feel like we are one step closer, and I am thankful for every single step!

IVF: The Raw Truth – Episode I

I don’t have all the answers. Every fertility journey is different so I don’t claim to know exactly what you might be going through, but I know there is someone out there who has no idea what to expect, or someone who just needs to know s/he is not alone. We had NO IDEA what to expect, and our first doctor wasn’t very good at filling us in. Surely I am not the only one, so I thought chronicling our journey might help someone else. Maybe it will help me, too…

After we found a new doctor and decided to move forward with IVF, we were told to get our finances in order and start taking prenatal vitamins. It felt kind of… un-exciting. It does not happen very quickly like you think maybe it should. You try getting pregnant for YEARS before you resort to IVF so a few weeks/months of waiting for IVF to start really shouldn’t seem that long, but it does. It took a few weeks to get our money together (we had already been saving) and then we called to see how soon we could start. They got us in two months after our initial consultation. (Note: Every clinic is different.)
MONEY DOES MATTER-

After we chose our protocol, I was told the clinic financial coordinator would get with us on how much our prescribed protocol would cost. WAIT! Let me say something here. First– Since our state mandates insurance pay for SOME fertility treatments we had to guess at what all we would pay out of pocket. They had us sign a payment agreement. Second– there is NO WAY the biller at your clinic can tell you exactly how much their services will cost you out of pocket until your insurance is actually billed. Your insurance really decides how much you pay. Also, you have to account for travel, labs or other third party services, and MEDS! The meds are not cheap and most insurances will likely refuse to cover at least one (or all) of your medications. So, what the biller at your clinic tells you is definitely NOT all you will pay. It’s just the tip of the iceberg! Even paying out of pocket there are extra little costs that pop up. Just prepare for it.

Our clinic offers some services for which they don’t even bother billing insurance, like the anesthesia used during egg retrieval, for example. It’s $500. They use a special scope to monitor the embryos for five days following fertilization. It’s called an embryoscope (trademark: Dr. Peter Ahlering/MCRM Fertility). It’s not even been around long enough to be billable to insurance. That’s $800. You can see how the costs add up pretty quickly. Most clinics also require a deposit. At least one small portion of that deposit will most certainly be kept by the clinic. We were lucky. Our insurance out-of-pocket (OOP) was only a few hundred dollars from being met so the clinic waived our deposit, as long as we agreed to pay for all of our clinical services up front, and another $500 to the anesthesiologist a couple of days before retrieval. Most couples with insurance would have to pay twice what we did. Have I mentioned how awesome our clinic is? Well, they’re fabulous!!! (Note: All clinics are different. See a common theme here?)
MEDS, MEDS, & more MEDS –

The cost of meds has really been the biggest shock for me. One cycle for us is about $850 in copays for medications. If we have to do more than one cycle it will be a little less next cycle, as long as we get it in before my deductible and out of pocket reset in January. Note: If you can somehow meet your insurance OOP before starting fertility treatments (particularly IVF) you need to try to do that!! When my OOP is met my med bill will be next to nothing compared to what we paid this cycle! As soon as you know what meds your doctor wants to use, call the insurance or pharmacy (if you’re self-pay) and make SURE how much it will cost you. (Tip: Be sure to ask the doctor or nurse if you will need multiple scripts for the same medication. — I needed 3 scripts for Follistim for one cycle.)
Curious as to some of the meds your doctor MIGHT prescribe? Here is a list of the ones I know about. There are lots of other ones, but this could give you an idea. Keep in mind each of these probably goes by half a dozen different brand names…
*Gonal F or Follistim

*Chlomid

*Letrozol

*Lupron or Luprolide

*Cetrotide or Cetrorelix

*Menopur

*Progesterone capsules, suppositories, or injections (Progesterone in Oil/PIO).

*HCG/Novarel

*Antibiotics (mine is Z-pak / Zithromax, AzaSite, and Zmax)

*Birth Control (maybe)

*Progestin

*Endometrin
We’re well into week one of our first IVF cycle. I feel like it’s kind of the downhill slope and I can finally breathe a little. We’ve had SO MUCH trouble getting my meds from Prime Specialty Pharmacy!!! It took us a month to navigate that shit storm! Now that we have the meds and the only thing we really have to pay for is the anesthesia at retrieval I feel a bit of relief. I’m cautious but more relaxed.

 

I don’t know anyone who has considered or tried IVF who truly knew what they were getting into in the beginning. You read everything you can get your hands on and ask all the questions and you still find yourself completely overwhelmed at some point in the journey – maybe multiple points in your journey. It’s almost like I don’t even know what questions to ask, much less the answers, and quite frankly most medical professionals aren’t very good at making sure their patients are informed enough TO know what questions to ask. In my opinion these OB’s, RE’s, and embryologists should be educating their patients so much they are leaving very few questions in the first place. (Just my two cents.) Given the lack of education, the cost, and the emotional havoc infertility inflicts on everyone, at least one emotional breakdown is inevitable, usually more than one – many in fact. Just trust me! Lucky for us our new doctor and MCRM are amazing and we feel much more secure than we did prior to April 26th this year.
Birth Control Pills (BCP’s) —

My baseline ultrasound and labs were done last Thursday, 7/13/17. That’s considered “Day 1” by my doctor. I was on birth control (BCP) for a few weeks prior so as to get me on the cycle days he wanted. They select about 15-20 couples each month for IVF and every woman in each cycle will be on their period at the same time. I’ve said this before, but I think he must be NUTS to want 15 women on the rag all at once! I feel sorry for the nurses/clinical coordinators. I know mine has spoken to me every single weekday since I started the BCP’s. This journey is HARD and Aunt Flo is a bitch in my experience. Add the insane stress that comes along with all things IVF and it’s a recipe for a nuclear meltdown! Oh! If you go on birth control don’t think it will mean you get a break from Aunt Flo! I have been off the pill for 11 years. I went on the BCP’s on Day 3 of my period in June and was on them for about 5 weeks. I spotted the ENTIRE TIME! 😡 Talk about pissed! I thought we could have a sexual free-for-all. I was bloated and oozing. Who would want to have sex with THAT???
INJECTIONS–


I’ve heard all different stories about the Follistim. One consistent report is they burn. They don’t just sting. They burn like you splashed boiling water on your skin, and for me the burning spreads all throughout my abdomen. I’ve done 5 shots so far. BUT, you do get used to it. Honestly, they’re tolerable for me. I just did one about an hour ago and I don’t feel terrible, just a little uncomfortable. It’s like a dull burn.
We go tomorrow for our first ultrasound and labs since we started the injections. I’m nervous, but I’m just holding onto hope. It’s all I can do. What choice do I have? Like I said, I don’t have all the answers, but here is some info that might help you out…
This is what I’ve learned so far (Tips and Tricks for staying – somewhat – sane):

* Ask your doctor or nurse for a list of every single medication you could possibly need for your treatment!!! — When we started this I was told to call my insurance to see about how much it would cost for medication. I was told to ask about progesterone, Follistim/Gonal F, HCG/Novarel, and Cetrotide. It turned out I also needed Lupron, Menopur, and a Z-pak. Also, I needed 3 separate scripts for the Follistim (so 3 separate copays). None of this was explained to me until after I got the call from Prime Pharmacy to setup delivery and they told me I owed them $900 in copays – which was wrong, by the way, because Prime is stupid and doesn’t understand what a “met” Out is Pocket is! This brings me to my next point…

* Dealing with the insurance will most likely be one of the most frustrating parts of this entire journey! — Seriously folks, if I was rich I would pay for this out-of-pocket just to avoid dealing with my insurance! Every person I speak to tells me something different, and the pharmacy apparently does not know the phone number to my insurance company because they have failed many times to call them when they should have. Thank God for my clinical coordinator at the doctor’s office because she is a saint! I don’t know any other nurse on this planet who has spent the number of hours on the phone with an insurance company that my nurse has. If you are lucky, you will have help from your clinic like we have had. If not, prepare to spend a lot of time on the phone with your insurance. And you should expect a lot of stress… and cussing. I hope not, but you should be prepared.

* Don’t do anything you don’t want to, but don’t make medical decisions based on money. You can make more money. You can’t make more eggs, and you can’t avoid regret if you don’t follow your gut. DON’T ignore your gut!
This post is crazy long, but it should get you started. Feel free to reach out. This stuff is NOT easy!!!! Until next time…

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!!!

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…

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.”

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