Infertility and Relationships 

Long Read Alert — SORRY! (But be sure to respond to questions at the end if you want!)

There is no question infertility (IF) affects relationships. Most people dealing with IF want support but don’t know how to go about getting it. Let’s face it, most of our friends and family don’t have a clue how to offer support either. In fact, I’ve found most people to be the opposite of supportive when it comes down to it. It hurts when the people in your life don’t understand, or worse yet – try to offer advice and support about something they couldn’t possibly understand. It’s especially difficult when they don’t support your decision, as is my case with some family members. I have really been thinking a lot about this because I’ve realized it has affected almost every single one of my relationships. It bothers me. 
I’ve suffered from IF for over a decade. I didn’t tell my family I suffered from IF for years because I didn’t want it to affect my relationships with them. It still managed to do so. It especially changed our relationships after I told them, and not really in a good way. I just can’t believe how judgmental people can be. 
Infertility is generally accompanied by a lot of not-so-great feelings. I was afraid people would judge me, or worse – feel sorry for me. Worse yet, I feared they would give me unsolicited advice. I HATE when people think they know what’s best for me and try to push their advice on me, ESPECIALLY when I don’t feel they understand. It makes me incredibly angry! 😡 It’s rude and invasive. 
T and I waited until we had already started stim meds for IVF before we decided to tell our family what we were up to. We had already been doing other forms of fertility treatments more than a year before we moved to IVF and no one knew. His family is more involved than mine, but he would rather keep to himself. They’re GREAT, honestly, but he gets irritated with me sometimes when I share things with them without discussing it with him first. He and I talked about it from the very beginning and decided no one in the families should be made aware of our IF until we were both ready. It was a mutual decision. 
I didn’t want to tell my family for different reasons than why T didn’t want to tell his. I knew some of my family would judge us and make us feel crappy about our decisions. In fact, I am now four weeks pregnant and I am afraid to tell my parents, but it’s obvious I am dealing with something physically. It’ll be hard to hide at my nephew’s birthday party tonight. 
When this all started I knew there were SOME family members who would be kind and supportive, and I knew they wouldn’t tell anyone else. We just figured it was “safer” to keep everyone in the dark. That way, no one gets offended when they discover one person in the family knew before anyone else, and I knew my mom would be upset if she was the last to know. 
Aside from my family, I’ve noticed how much IF has affected our friendships. A few of our friends have careers and children and don’t have time to hang out anyway. The rest of our friends are still single or have partners but don’t want or never had kids. When you’re going through IVF it kind of consumes your entire world! You don’t talk about much else because it’s pretty much all you do. Not to mention you’re paying for IVF! You’re too broke to pay for dinners and activities with friends. I’m sure some friends feel abandoned or forgotten. Others might be jealous. Let’s face it, infertility is a taboo subject. You never know which of your friends might have skipped on having a family simply because they couldn’t. I have a few friends that I know would have loved to have kids and couldn’t for one reason or another. Many of them couldn’t afford IVF, or their lives didn’t allow them the freedom to pursue fertility treatments. I used to be angry at people who could have kids or afford fertility treatments when I couldn’t. I totally understand how uncomfortable, even painful, it can be to talk to another friend about fertility and/or having kids. I get it, but I definitely do NOT want anyone to feel that way because of me! I am SO thankful for a few of my friends who I know have suffered and still have the grace and love to ask me about what we are going through. I know firsthand how hard that must be for them and I love them even more for it. Anyway, we can’t control how people react but we wanted to approach telling people cautiously. So, we chose to wait. 
Even strangers can sometimes seem kind of hateful toward us. I started this blog before we told anyone we knew about our journey. T is fine just not talking to others about it, but I needed an outlet and what better way than to write about it? I met other IF survivors in the blogosphere and was able to learn a lot from them. I even made some “friends” through blogging and it helped me so much to know I wasn’t alone. However, in sharing my journey online I opened myself up to criticism, and jealousy sometimes too. It’s kind of a vulnerable place to be. People feel free to say whatever they want. There’s little-to-no accountability for what you say online. I love WordPress, but it’s not Facebook. Posters are often identified by screen names. You can’t block certain people and content so easily, and everything you post is basically public. I WANTED (want) to interact with people, but I had to be prepared for what that could mean – including negative feedback. 
This is MY journey. It’s going to be different from others’ journeys. I sometimes write “in the moment”. So, when I’m struggling it could come off as negative or whiny, and when I am celebrating it could seem like I am gloating and be painful for those hurting. It’s such an emotional subject! I try not to “assume” my experiences or advice will help anyone, but I do sincerely hope they do! If not, I hope everyone understands I mean no harm. But there is always potential that something I say will hurt someone somehow, particularly by reminding them of their own struggle. I’ve met some negativity and criticism from a few of my posts. Some posts I’ve taken down because they hurt someone. If that’s the case for any of you I sincerely apologize. 
Infertility is hard all around – no matter where you’re at in the journey. It would be so much easier if everyone understood and was supportive but that’s not the way the world works. It’s on the shoulders of those of us dealing with it to educate those around us. It seems unfair that we should also have to carry that burden. There are just so many facets to fertility treatments that you can’t explain them all, and people don’t understand that it changes you! You have to change when and how you do almost everything. Your whole life is flipped upside down. t’s just SO MUCH. There are TONS of online resources our friends and family could research to learn more, but most of them won’t. They want YOU to explain it to them, when you’ve already explained it dozens of times. Maybe you don’t even know all the answers to their questions. They’ll ask about things you don’t want to talk about, too. How do you navigate THAT??? 
It’s not that they don’t care. In fact, they wouldn’t ask if they didn’t care, but part of me wants to say, “If you care so much, Google it for yourself.” I would never do that, but it just gets frustrating. I do occasionally share links on my social media. For example, this link to an article about how to talk to people battling infertility: http://www.resolve.org/national-infertility-awareness-week/25-things-to-say-and-not-to-say.html , or this one which explains the IVF process:  http://www.mayoclinic.org/tests-procedures/in-vitro-fertilization/details/what-you-can-expect/rec-20206943 .  I don’t know if they read them or not. I’m guessing not.
The hardest part for me has been the affect this is having on my relationships with my immediate family. My mom refuses to even acknowledge what we are doing, much less to offer support. The last thing she said in reference to our IVF was, “You do realize a baby is a major life change.” My response, “No, Mom. I’ve been stabbing myself in the ass and stomach multiple times a day for weeks because I didn’t realize it was a major life change.” (I mean, seriously?) My sister hasn’t even said a single word to me about any of this. She does have two kids of her own. She’s a single mother and one of my nephews has been very ill, but she could at least acknowledge it! She has not said a single word, but she hasn’t hesitated to ask me to babysit. My dad, stepdad, and stepbrother haven’t asked at all either. In fact, the only person in my immediate family who has even bothered acknowledging what we are going through is my biological father – who speaks to me maybe once or twice every few years. (Yes. I have three dads. Be jealous.😉) How ironic that the one immediate family member who usually ignores me and alienates me is the ONLY one of them who even pretends to give a shit! I just don’t even know what to think that!
Luckily, I have a few aunts and a handful of cousins who are incredibly supportive, and T’s family has been so great. In fact, his mom checks in almost every day and I have two aunts who have done IVF before. I shouldn’t complain because we have a great support system in many of our friends/family. Actually, I don’t think I am complaining. I’m just kind of thinking out loud. A friend who has suffered SO MUCH and was dealing with her father’s funeral took the time to ask how I was feeling the day of our retrieval, but my own mother couldn’t be bothered to ask when or if I was having the surgery to begin with – despite the several attempts I made to discuss the process with her. The only thing SHE has offered us is negative criticism. I don’t understand why she’s being that way. She knows I’ve always wanted a baby, but she thinks I am too old. I’m sure Downs Syndrome is a concern for her due to my being over 35 (I am only 36), and two of my nephews are already struggling with disabilities. She’s probably concerned she will be stuck helping to care for yet another sick grandchild, but isn’t that kind of selfish? Shouldn’t she just root for us and support us? I don’t know. It just hurts. 
The one relationship I know has definitely seen a positive effect from all of this is my relationship with T. This journey is so incredibly hard. It destroys some couples. We’ve really had to depend on each other and learn what we are capable of. I handle the appointments, the medication schedules, etc. He handles all the physical stuff. The emotional stuff we do together. He made sure to be home to help (& still helps) with every single injection. He hugs me when they hurt and I cry. He held my hand when I was writhing in pain after retrieval. He has endured many sleepless nights when I am hurting and can’t get comfortable. He sat next to me 10 days ago and watched our two little sweet peas on the ultrasound monitor as they were placed in my uterus – two tiny, glowing grains of rice. He runs to the store. He holds my hand, rubs my feet, cleans the litter box, and helps around the house. Yesterday he cleaned the bathroom! That’s amazing! I’ve ALWAYS been on bathroom duty. He even drives in the city for doctor visits. (He HATES driving in the city!) We take turns cooking and doing light housework. He does the laundry and I put it away. We are more of a team than we have ever been! 
Everyone navigates the sexual side of this a little differently, and once we are out of the woods I am sure our situation will change. I just can’t really do much for him right now, and he is so patient and understanding. I am only 4 weeks pregnant by “normal” standards, but I am on light restriction, and my body hurts! My hormone levels have been VERY high. My abdominal muscles are already stretching. I’ve had insane heartburn (and subsequent nausea). My hips hurt. I’m bloated and extremely fatigued. I also strained an ovarian ligament after retrieval so that hurts a lot. We’ve had multiple losses and there’s no guarantee our sweet peas will stick. The first several weeks are a little worrisome so I am basically worthless in the bedroom. A lot of men would act out, try to get some sexual favors. (I read on a chat forum the other day a husband was forcing his wife to have anal sex because he insists on having sex every other day and she’s restricted from vaginal sex.😡 -BULLSHIT!) T doesn’t even ask for anything sexual, and he never complains. We are pretty open-minded sexually. He will never guilt trip me, and I refuse to feel guilty because we deliberately made this decision together and we will navigate the entire journey together – with respect and open communication. 
We have maintained open communication through all of this and it has been amazing. We have our little squabbles but nothing worse than any other day. We’ve done our best to maintain some sense of normalcy, and we have refused to isolate, even though staying home and napping a lot sounds pretty good! We see our friends and family. We attend events, although we may leave early. We both work and go about our day to day, and we talk to each other. We are candid and open, and it has been our saving grace throughout a very difficult process. We grow stronger together every day. I’m loving it. 
My sister planned her one-year-old son’s birthday party last minute so it’s tonight from 4-8 (on a Sunday night!). I don’t want my family to know I am pregnant yet. We aren’t out of the woods for several more weeks and MOST of my family doesn’t know how to keep their mouths shut. Aside from one aunt and a handful of cousins I don’t trust any of them to respect our privacy. My mom is the worst one. My entire hometown will know by next weekend and I just don’t want that, and neither does T. He’ll be furious! We don’t mind if our families know, but not the whole town! 
I just don’t know how to deal with this birthday party. I can’t pick up my baby nephew. He’s over 20 pounds and I’m restricted. My whole body hurts because my muscles and ligaments are stretching. My butt hurts from the progesterone shots, and I have that strained ovarian ligament. I guess I could just use the ligament as the reason for my pain and restriction, and then use it as an excuse to leave early. I don’t know. I WANT to tell my mom because it would be great to have her support but I just know I will be hurt and disappointed. Sigh…
How has infertility impacted your relationships? How have you dealt with the changes in relationships? Do you have friends/family who are less than supportive? When did you decide to tell your family you were pregnant? 

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…

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

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