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 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 III, “Egg Retrieval”

Most of the women I have spoken to said their egg retrieval was basically nothing – a minor inconvenience. They skip a couple meals, go to the clinic, fall asleep for 20 minutes, wake up feeling good and loopy, and go home. Believe me when I tell you I wish that was my story. None of those things really happened for me. I contribute part of it to my “cautious” attitude, but the rest is just my shitty luck. 
First of all, my ultrasound and labs resulted in adding three extra days of stim meds before retrieval, meaning our retrieval was set back two days. It also meant more jabs to the stomach. I went in for retrieval looking like this…

(This was while some bruises were healing and others hadn’t quite set in yet.)

When we finally did get to retrieval day, all the nurses kept telling me to smile and asking me what was wrong when we arrived. I just kept saying, “Oh, I’m just a little nervous and hungry.” To be honest, I was VERY nervous. Everyone kept telling me how “easy” retrieval is, like it’s absolutely nothing, but I couldn’t shake the feeling that I should be worried. I’m just used to things going wrong. 
Here is how the day went… 

PREP–

We ate a big breakfast around 8am. I couldn’t eat after 9am and couldn’t drink after Noon. T skipped lunch, too, because he felt bad eating in front of me, but he continued to drink. When we arrived (30 minutes early), I figured we would wait FOREVER but we didn’t. They took us straight back. 
T did his business (gave a sperm sample) while they had me fill out paperwork. They let me pee and gave me Tylenol to “take the edge off”. I got to drink a little water with the Tylenol. It was the best sip of lukewarm water I’ve ever had in my life! I was SO THIRSTY! Then they had me strip from the waist down and put a gown on over my shirt. T came in and said all went well with his part. The nurse came back to collect my paperwork and said it would only be a short wait. While we waited they brought a woman from the procedure room in a wheelchair and wheeled her to the bay next to us. She was crying and moaning. She was really carrying on. I couldn’t see her or understand anything she was saying. She was just moaning loudly. Honestly, it scared the holy bejesus out of me! I don’t begrudge her because she must have been in pain, but I made a mental note to try not to do that so I wouldn’t scare any of the women coming behind me. 
I had spoken on the phone with the anesthesiologist, Brian, the night before. I told him all about my previous episodes with vomiting and panic attacks when waking from anesthesia. He said they would treat me with “kid gloves”. He was really nice. He came in and introduced himself to T and reviewed everything that would happen. He said we were looking at retrieving at least 15 eggs. I kissed T and off we went. T hung out in our recovery “bay”. I followed Brian, walking behind him in my gown with a blanket wrapped around my waist. The procedure room was just about 20 feet away. 
PROCEDURE–

In the procedure room the nurses were listening to 80’s and 90’s tunes. I saw familiar faces. I had been in there before for an ultrasound when the other rooms were full. The table had a bunch of plastic all over it this time, and a pillow. They had me lie down on the table and “scoot down” (like you do for every ultrasound). They propped me up in the back with a pillow and put my legs in these U-shaped stirrups that hold your legs above the knees under the thighs. Then they started an IV. It didn’t hurt until they started pushing the propofol. My whole hand and wrist hurt pretty badly and then I fell asleep.
POST-OP —

I woke up to Dana, Brian’s assistant, telling me to sit up and hug her. I hugged her and the next thing I knew I was being wheeled out. I was wrapped in a bunch of blankets. I could feel some kind of pad under me but I had zero pain. Dana told me I could stand up slowly and get dressed. She asked if I needed a pad and I told her I brought one (which they didn’t tell me to do – I just guessed). She left the room. 
I sat there a minute in my wheelchair and realized I felt very wet downstairs. I thought maybe it was lube from the procedure. I looked down there and saw quite a bit of blood. I told T and he went out to tell the nurse. The nurse said it’s normal to have some bleeding and offered him some wipes and paper towels. He came back and I stood up. Blood started pouring down both legs. I looked at the wheelchair and there was a chuck (disposable bed pad) with a red, plate-sized blood stain. I grabbed the paper towels to catch the blood running down my leg. Some had dropped to the floor. Between the wipes, paper towels, and the blanket I was able to get everything cleaned up and I changed. I sat down on the bed because I was freaking out a little and had started cramping some. When I sat down the cramping really started. It hurt like a miscarriage, but I reminded myself to keep my complaining as quiet as possible. My nurse (clinical coordinator) came in to check on me. I told her I was freaked out by the blood and she said they pulled 21 eggs so some bleeding is expected*. She gave me more Tylenol and post-op instructions and said she would call me the next day. 
*NOTE: For those who don’t know, they get the eggs by aspiration of the follicles in the ovaries. Basically, they stab the swollen follicles with a needle and suck the eggs out. Stabbing the follicles always causes some bleeding but for some lucky folks the blood never escapes the abdominal cavity. That was not the case for me!
I would have done a few things differently had I known what to expect. (Read to the end for my tips.) The assistant, Dana, walked me to the car. She said it was like I was running. I was most certainly not running. I was in pain, but I did want to get home (2 hours away), and I was starving!!! T helped me get settled. We laid the seat back a little. I put sunglasses on. T covered me with a blanket and positioned my horseshoe pillow just the way I like it. T hates driving in the city but he did great. I dosed off and on for about an hour until we got to a place where we felt comfortable stopping. The pain kept increasing and I wanted to stop before it got really bad. 
We stopped for a quick bite to eat. I used the restroom and had to change my pad. (I got extras from the clinic because I only brought one.) I had ice cream and French fries. Nothing sounded good but I was hungry. I had read on the clinic’s Facebook page that some women would get carry-out from Olive Garden, Buffalo Wild Wings, etc. I don’t know how on Earth they could eat anything substantial right away! I was loopy and hurting like Hell! T was famished so he ate a huge meal and then we went home. I slept the whole rest of the way. 
AT HOME–

My abdomen hurt pretty badly the first 36 hours, like on a scale of 1-10 I would say I was at a 7/8. Brian had warned me that they used less anesthesia for me because of my sensitivity, which could causes more post-op discomfort. I rotated Tylenol and Ibuprofen every three hours and used ice packs 15 minutes on, 15 off the whole first night home and most of the next day, when I was awake. I woke up the next morning with BAD heartburn. I know pregnant women can have TUMS, so I sent T to the store for those. I read blogs and Facebook support group posts and a lot of the women complained of fluid buildup in their abdomen, heartburn, and cramping. I read that drinking lots of Gatorade and eating salty foods helped some women to draw the fluid away from the abdomen to help with bloating/cramping. I ate chicken soup, Saltines, and ramen noodles and drank about 80 ounces of Gatorade. I didn’t really bloat but still had a lot of tenderness in my abdomen. Many women complain of constipation. I have a slow bowel anyway so I don’t know that I was necessarily constipated. I ate applesauce and drank grape juice to help with that. (I should note I normally never eat Ramen noodles or drink lots of Gatorade. I drink mostly water and we eat pretty healthy.) 
I also had HUGE blood clots. I did NOT expect clots, especially not big ones (the size of a quarter, or larger). My nurse called on the day after retrieval to check in and give me updates and she said clots are normal. I just wish someone would have warned me! She also said the heartburn was from the anesthesia and TUMS were just fine for that. I told her I was still really tender and she said it would be much better two days after surgery, and that I should be done bleeding by then as well. 
POST-OP MEDS —

I didn’t realize I would have to do meds/injections after getting home on retrieval night. I had to do an HCG injection in my stomach, a progesterone injection in my hip muscle, and insert a progesterone suppository into my vagina. Since I was still bleeding I used gloves (which I just happened to have at home) to do the suppository.  I’ll be doing injections of some sort at least every other day until a week or two after transfer, maybe longer. 
BACK TO WORK–

Our retrieval was Saturday. I was supposed to go back to work two days after retrieval (Monday/today). I didn’t have a problem with going back to work. I actually wanted to get back because every sick day I take now is one day of maternity leave I won’t have if this works. As of last night when I spoke to my nurse, I was still really tender. I was having trouble with pain when getting up and down out of my glider chair or the couch. I told her I thought I could do desk work but didn’t really feel comfortable working on the road (I am in social work). I was scheduled to drive about 4 hours today and thought it might be pretty uncomfortable. She said desk work would be fine. I texted my boss to ask if I could reschedule my home visits to another day and stay in the office today. He said he wanted me to stay home and requested a medical release back to work. Sigh… I should have just gone to work and rearranged my schedule – act now and suffer the consequences later. Oh well. I get another day off I guess, and time to compose this entry. It will just make work a bit more stressful when I go back tomorrow. 
OVERALL I know mine is NOT the worst retrieval experience ever. I’m mostly just irritated I couldn’t go back to work today like I wanted, and I do wish I had known better what to expect. Here’s the thing, though… We got 21 eggs, 16 of them completely healthy, and 10 of them fertilized normally. That was the goal – to get several healthy embryos – and we accomplished it. I love our doctor and our clinic. I think they’re the absolute BEST, and they have worked SO HARD to make this affordable for us. We are VERY lucky to be their patients. However, I think there are a just a few things that get overlooked – probably at ALL fertility clinics. I worked in the medical field for well over a decade. When you live in that culture every single day you sometimes forget that patients DON’T see you every day and you assume they know things they don’t. It just happens, but maybe this will help some of my fellow infertility sufferers..
TIPS:

*Take 2-3 GOOD pads – not the thin, plastic ones. Take thick, cottony ones, and a change of clothes (especially underwear). If you wear a bra, make it a really comfortable one with no metal clasps. 

*Take a cooler with cold bottled water or Gatorade. You’ll be really thirsty when you wake up. 

*Take an ice pack!! You can put it in your cooler with your bottled water/Gatorade. I WISH I had an ice pack for the drive home!

*Put a pillow and/or blanket in the car if you have a long drive home. You’ll be groggy – and wear sunglasses or something to keep the sun out of your eyes. 

*Take some Tylenol with you. They didn’t offer more Tylenol after the surgery but when I asked my nurse if I could take more after, she said I could. 

*Take snacks. I really did NOT want to go eat somewhere, and we lived too far away to just do carryout. I guess we could have ordered it from somewhere close to home, but we were starving and two hours from home. Having snacks handy would have helped. If for nothing else, your partner might be hungry. T wouldn’t eat after breakfast since I couldn’t and my surgery was in the evening. I felt terrible. He could have snacked for the 20 minutes I was in surgery. 

*Maybe ask your nurse what they suggest you should bring with you. They didn’t give me a list or anything. (I am a huge fan of lists.) I just got pre-op and post-op instructions (No food after 9am, no liquids after 12pm, you may experience some spotting/cramping, etc.) 
I truly hope this is helpful for someone out there. I didn’t find anything like this when I was looking for info on what to expect. (Maybe I didn’t look hard enough!) I just hope someone out there can benefit from reading my ramblings, and if you, too, are somewhere in this journey I wish you all the best! Until next time…

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