Monday, April 29, 2013

You Win Some...You Lose Some...

Relax & Rejuvenate

This weekend I did everything in my power to shrink my pesky little cyst(s). I had a most fantastic massage. Splurged and did the whole hour and a half. It was amazing. I did a therapeutic, so we went over what's "ailing" me, and she went to work. She even massaged my ovaries and my reproductive points around my ankles. Though anyone that rubs my back for almost an hour is pretty much in my will.

Thanks to a little Eat Love Procreate advise, I also got busy with my castor oil packs and picked up some EstroDIM. I even reduced myself to 5 days of drinking apple cider vinegar in my water. Not a fan, but hey, I'll do whatever at this point. 

Down to Business

My husband and I spoke for a long time (over margaritas) about what to do about CCRM. I think I jumped the gun a bit on Friday, but I felt like, it's cycle day 2, I have to call or I'll lose my chance. That's okay, it got us to really look at the big picture. How many IVF cycles do we plan to try? How many could we try if we went to CCRM? How many could we do in Chicago? Because those are very different answers. Obviously CCRM is leaps and bounds more expensive than Chicago. They obviously have better stats. If my odds had been better with them when I had my phone consult, this may have been an easier decision. But they did not give me the great odds that they are known for. I have to remember that. So not only did we decide to put off the ODWU for now. We decided to put it off for several cycles. I won't say for good, because well...I've been known to change my mind. There really is no point in spending that much money for duplicate testing (maybe not all, but most) and not cycling there. 

My RE has been amazing. My nurses have been amazing. So while, yes, my head tends to point me to CCRM every so heart is with Chicago. I really feel like they want this to happen as badly as I do. I hear frustration and sympathy in their voices each time I speak with them. They are so incredibly kind and compassionate and I'm going to simmer down and stick with them as they have me. 

The Fantastic News

I was not sure what would happen at my ultrasound today. However, if by some miracle I was ready, I would have to start injections tonight, so my meds were shipped on Saturday and they arrived today. Wow.

The great insurance covered all but $850 of this mighty stash of drugs. This FLOORED me as I thought I was 100% out-of-pocket. Apparently I have some prescription benefits, which is awesome!! We may have just found our vacation fund. 

The Shit News

You knew it was coming. My ultrasound today showed that my cyst went from 12.5mm to 11 mm. My estradiol went to 133, up from 123. My HCG even is not at 0. It's less than 5, but they want it less than 1. My progesterone was 2.6. I am not at an optimal place to move forward. I knew this. I've known this since Friday. It's not what I wanted to hear, but I also want this IVF cycle to have a good starting place, is what it is. 

I have 3 weeks off. No more blood draws, no more ultrasounds, no more waiting for nurses and doctors to call. I have 3 weeks of quiet. After the past couple months I'm unsure of what I'll do with myself. I guess I'll pull out the old BBT and OPK's and give this month an honest effort. What the hell, huh?? 

So my blog for the next 3 weeks will be about planting flowers, spring time weather and baby dancing. 


Friday, April 26, 2013

It's Almost Laughable At This Point

Do you ever sometimes want to cry and laugh at the same time. Cry because, well, the situation sucks. Laugh, because, well, I should have known things would just continue to get worse before they get better. I mean...what is rock bottom?? Surely...I'm there.

This post is going to make no sense. It makes no sense in my head, so please bear with me.

I posted on Wednesday that my E2 had gone back up so Tuesday was my last birth control pill. When I spoke with my doctor, he assumed I'd get my period over the weekend and we'd do a baseline on Monday. Well, it definitely arrived yesterday, making it cycle day one. So I was told I could go in this morning for the baseline and blood work. I knew that chances were I have a cyst and that's been causing the crazy estradiol numbers and surely they hadn't come down that much since Wednesday. But, in I went.

I was able to find out before I left that the ultrasound showed the following:

Right Ovary - 12.5mm, 9mm

Left Ovary - 4.6mm

I knew at that point, this cycle was toast. No way I had follies that big on cycle day 2!! I knew I wouldn't get confirmation on the blood work from my doctor until this afternoon, so in the meantime, I got a little idea. There is no way, I'm going to sit and twiddle my thumbs for ANOTHER month. No way, no how. What I can do, is schedule my ODWU with CCRM. That way, I could get all my tests ran, still decide to stick with Chicago if I want for one IVF, maybe not, but regardless, my testing would be done. Because if Chicago failed, we were heading out to Denver anyway.

So, I pulled the trigger. ODWU is next Friday. All I wanted to do was to wait for my RE to call to confirm what I suspected to book my flights.

They just called. The RE's notes said "No baseline, repeat Monday".


I could tell that last night when I told them I was on cycle day one, they were a little skeptical that I would already have started. So are they thinking it isn't a true cycle day 2 baseline? I can confirm with anyone interested that this has been the heaviest 2 days that I've had in 6 months, so for me, there is no doubt. So, if I have a cycle day 5 baseline, is it really possible that those size follies/cysts whatever they are will go DOWN during the early follicular phase?? I would think that no matter what it will be to late to begin stimming. Am I wrong?

I did send my RE an email asking for some major clarification. I need to decide whether I book flights to Denver or not...still leaning towards it. The more information I can get the better at this point.

So I guess I need some advise, opinions, first hand knowledge, or maybe I just need a drinking buddy because of the ridiculousness of it all???

Thursday, April 25, 2013

Breathe in. Breathe out.

I keep telling myself things are getting better. Things are going to turn around. We're taking everything that comes at us and I'm doing my best to just keep up.

We've been waiting for my estradiol to drop. I've been on the birth control pills for 4 weeks. Tuesday was my very last day, no matter what happened with my blood draw yesterday. The past 3 blood draws have shown a slow but steady decrease in my e2. Until yesterday. My e2 went back up to 144 from 125. 

What does this mean? It means my body is not cooperating. It means my body has basically said f-you to the pill. It probably means, I have a cyst. It definitely means, I'm still not ready to start my IVF cycle. 

I'm currently waiting for my period to start. Once it does, I'll schedule a baseline. If by some miracle, everything looks good, we'll start everything on cycle day 5. If it shows a cyst or elevated estradiol still, we'll be moving on to "something else". I don't yet know what "something else" is. 

That's where I am right now. Just stuck. In limbo. 

I want to tell all of you, my friends that I have never met, how much your comments on my last post meant to me. Each one of them made me cry happy tears because I am truly lucky to have you all in my life. Everyone of you knows what it's like to be where I am. You lift me up with your kind words and push me forward. 

Thank you.

I also want anyone that hasn't visited Em at Teach Me To Braid to read this post. She so very eloquently expresses the pain and sorrow of infertility. I sometimes wonder if she's reading my mind...

Tuesday, April 23, 2013

Infertility Awareness - Walk a Mile in My Shoes

Reading everyone's stories lately has really forced me to reflect on where I am and how I got here.

I'm 35 years old, quickly coming up on 36. I started trying to conceive 2 days after my 34th birthday. July 10, 2011 was the first day of my period and we threw all forms of birth control right out of the window. We had only been married a month, but we had spent 10 amazing years together. So why wait. We had already waited. We had already traveled and lived our life "pre-children". We were ready. There was no point in waiting any longer. After getting pregnant on the Mirena IUD just a few months prior (ectopic) we thought, oh, this will be easy. I mean if we can beat those odds...

Unfortunately, my cycles were irregular. They were lasting close to 40+ days. I didn't wait long. By October I was in my regular gynecologist office asking for help. He recommended I use Femara with my next period. That period never came. I was pregnant. I was thrilled. Over the moon. Except something wasn't quite right. I didn't feel pregnant. Then the spotting started, but my betas were amazing, so I was told not to worry. Due to the earlier ectopic I was given early ultrasounds to confirm a uterine pregnancy. So at 5 weeks, there it was, perfect looking sac in my uterus. Come back in a little over a week so we can see more...maybe even a heart beat.

I continued to spot, I continued to feel, nothing. My next ultrasound was scheduled on the 3rd anniversary of my mother's death. I kept telling myself, that the universe was not that cruel, everything would be fine. The morning before the appointment, I finally got morning sickness. You have no idea how happy this made me. The next day, the same thing. Finally, this is okay. It's happening for us.

We went together for the ultrasound. It was a Friday afternoon. November 18, 2011. A day of sadness for me, but this time, my mother would be looking down on me, so I held on to that. Until the ultrasound tech as if she was telling me the weather, said it was a blighted ovum and left the room. The sac looked exactly the same as it had a week and a half prior. The rest is a blur. There was a consult room and a doctor (mine was on vacation) telling me I needed a D&C. They scheduled it for Monday, because after all, Thanksgiving was the next week. My world fell apart that day. I was shattered.

I could go on about the d&c (and then subsequent emergency d&c that was done 6 days later while visiting family for the holiday), but what else is there to say about that. At that point, you're just going through the're not really present.

In late January, 10 weeks later, we were finally able to start trying again. At this point, we've gotten pregnant twice in less than a year. I'm grieving, but I still have hope. We tried month after month. Every month I ovulated. Proof from the temping, the monitors, the OPK's, the progesterone levels, all proved it. Every month, nothing happened. I would count out my due date each new cycle. The next cycle, I'd start over. The hope remained. Even though every day, ever month, it got harder and harder. Friends that were trying were getting pregnant around me. Left and right. Then they were having their babies. I was still on the outside looking in.

My RE appointment finally came and went. We all know how that went for me. Dr. Asshat, as I like to call him. Refused cycle day 3 blood work for the first 4 months. After 2 failed IUI's, I demanded it.

And finally, there it was. Diminished ovarian reserve. And not just low AMH and high FSH. But REALLY low AMH <.16 which is undetectable. The FSH was similar, at 18.5 it was very high and increasing. I was dropped by my RE, with a snap of his fingers, well unless I wanted to use donor eggs right away.

Every RE in my city is basically the same. No one wants to bother with a woman with DOR. Their odds just aren't good enough. My only option was to travel. So off I went to Chicago, then the call with CCRM. My odds still, were so low. I was given between 10-20% odds of success with IVF. Even with some doctors telling me it was pointless, I went forward with my laporoscopy and hysteroscopy only to find out I had stage III endometriosis that my left ovary twisted and adhered to the side wall to the point it wasn't functioning.

That leaves me with where I am today. After a chemical pregnancy following my surgery and more waiting, and under suppressing on birth control I am still waiting just to move on to IVF.

My hope...has wavered. My belief is not as strong. I no longer see a child in my future with certainty. I don't feel as strong as I once was. I often wonder what I did to deserve this. If something from my past is coming back to say, "ain't karma a bitch?". I'd like to think not, but the loss of my fertility could be one hell of a blow.

Being infertility awareness week, I have recently wondered if I should take my struggles more public. To make people more aware, rather than to hide behind this disease. At the end of the day, I take so much pride in this world that I have to myself, outside of people judging me for the anger and sadness that comes with this journey, that I can't share this blog with just anyone. I feel supported here. I cannot lose that, at least not right now. One day, I hope that changes, and I can share my journey and my struggles with everyone so that their can be more understanding and so that women can be their own advocate when it comes to their reproductive system. I hope to get there...

I don't know what lies ahead. I don't know if I'll become a parent. I don't know if we'll do donor eggs or adoption or if we'll choose to live a child free life. That option breaks my heart, but what I've learned in this, is there are no guarantees in this life.

Thursday, April 18, 2013

All is not lost...yet

I say that with a cringe, because at this point, well, it's hard not to.

My estradiol levels dropped to 150 on Tuesday which my doctor considered good news. They are "hopeful" that another week of the bcps will get me where I need to be.

I retest on Friday and I'm crossing my fingers (toes and eyeballs) that the number is continuing it's downward slope toward suppression. We shall see.

Today is officially day 21 of the pill, so looks like at a minimum, I'll be on them for about 4 weeks total. Quite funny for someone with DOR that was so worried about over suppressing and I did the opposite.

I had originally scheduled a phone consult with my RE in Chicago after the news on Monday that we may have to start from scratch if my estradiol was still high. I had a whole list of questions and concerns. After I received the news that we'd continue to creep along, I cancelled that call thinking, well, my questions are now sort of irrelevant at this point and I'll probably need to talk to him next week when all goes south again. To my surprise, he called me anyway even though I'd been taken off his schedule. He wanted to check in with me regardless. Super nice. I was a wee bit flustered as I then had to think up some good questions!

I did address the concerns I have regarding another month on the bcps and he said that if it came to that, we could reevaluate our protocol and if I can get a good baseline we could potentially go right into stims. This eased my mind tremendously, as I can't help but feel like continuing to put off any treatments in the months following my lap/hysteroscopy when I should be at my most ready to go, was a bad idea.

So that's it. No real news or start date. Just continuing to monitor my levels and hope for the best. Thanks for all the kind words in your comments. The certainly can help talk a gal off the ledge.


Monday, April 15, 2013

When is it my turn to get a break?

I settled down a bit over the weekend. While frustrated because of the delay, I said to myself, it's only a week or so, you can do this.

Then I got the call this morning. The doctor is concerned about my high e2 numbers after two weeks on the bcps. I have to go back in tomorrow to have more blood work. If my estradiol is still high, they want me to do a trigger shot to force ovulation, wait for AF then start from scratch. That means, back to the bcps for 2-3 weeks.

So I could potentially be looking at IVF in June?

I know that my RE is wanting this to be a good cycle. They've said that over and over again. I believe them. They are trying to look out for me and want the best for me. That does not mean that these delays aren't beyond frustrating. When so many doctors have told me that I'm running out of time, only to have time snatched away from me at every's starting to get, well hard.

I want a child.

And this is not fair.

Saturday, April 13, 2013

Tis the story of my (infertile) life.

Yet another road block has emerged.

I've been so concerned about over suppressing as everywhere I look (thank you, mr. google) it says that bcps are not good for DOR patients. I talked my RE into only 2 weeks of the pill and I had my u/s and blood work yesterday.

Well, we aren't starting the stims next week. My ovaries apparently have to much activity. My estradiol levels were 205. I hadn't even thought about it but this coincides with my really sore boobs and ewcm that I've been having. Related? The nurse said my body isn't suppressing.

So I have to continue taking the bcps for at least another week. I'll go back in for another u/s next Wednesday or Thursday and will potentially have to continue on the pills even longer.

Well this has me pretty stressed out on so many levels. Now I really am worried about over suppressing. WTF is going on with my body?! I haven't had a period since February 1st...have I mentioned that lately?

I've been googling like crazy. I can find women that over suppress, but I can't find out what were their findings at the end of the bcp? What should they be if I'm DOR and I weren't on the pill? How will I know if I over suppress? Will I know before I start stimming, or is this something I'll find out mid way through the IVF cycle? I just have so many questions, so many concerns and on top of all that...

I'm fucking frustrated.

Tuesday, April 9, 2013

IVF Update

I got a little bit of good news last Friday. After a bit of concern on my part, due to probably way to much googling, I had reached out to my RE last week about possible over suppressing on the bcps, as that is somewhat common with DOR. They agreed to have me come in this Friday to do a baseline. If I'm suppressed, I'll stop taking the pills a week early. If things look good, everything moves up a week.

That's great news. I'm ready to move on and get this started. The past few weeks or even months have been pretty all over the place emotionally. I wish I had more confidence. I wish I knew if I'd respond. I find myself looking at donor egg options more and more. I hope it's not a hunch that proves to be right, but in my gut is telling me that's the route we'll need to take. I don't know that Chicago, CCRM or anyone can really fix the numbers I've been dealt. The fact is, as many DOR women that have become pregnant, not many (if any) of them have my numbers. It's a scary reality that I'm facing that this may not be a winning battle for me. It's a hard thing to swallow. I'd love nothing more than this IVF to be the perfect storm to create a lasting pregnancy. I'm trying to hold onto a small amount of hope and faith.

My step-sister had her baby last Thursday. I'm very happy for her, but I'm sad for me and what I had always hoped for. I grew up taking care of everyone else's babies. I even babysat well into my mid-twenties. I've always been the girl drawn to them. I knew without a doubt that T and I would be awesome parents. T is the "get on the floor and play with anyone's kids" kind of guy. The guy that makes googly eyes at random babies in the grocery store. How is it possible that we are where we are? begins soon. I'll try and remain positive and will post as many updates as I can as this process gets moving.


Thursday, April 4, 2013

Why is everyone trying to set off the infertile this week?

Apparently no one was happy about my zen-like demeanor that I boasted about earlier in the week. Okay, most of you lovely ladies that left me the most wonderful comments were, but other than that, not so much. So my mood has since deflated.

Lets recap:

First, after the difficult decision that we came to that was to do basically our "trial and error" 1st round of IVF with the Chicago clinic, a woman from a thread that I'm on, felt the need to publicly announce their awful stats and this and that. Okay, no, the stats are no where near CCRM, however, neither where the chances that CCRM gave me. So I feel that their stats can be somewhat skewed depending on who you are. I had a bit of a melt down after that, and was in a funk the rest of the day because it of course had me stressing over whether I was making the right decision. I almost took of my husband's head when he told me to relax, blah, blah blah. Bad day, and while maybe she meant well, and it wasn't intended for the way it came out, I was still very hurt that someone going through this journey would add anxiety to an already stressful situation.

Second, I had dinner with a close friend last night that knows of my infertility struggles and has always been very supportive. We are on opposite sides of the fence when it comes to political views, which is fine, that's our right. I typically hide from any and all political talk, and we've always respected each other and just agreed that we disagree and don't discuss. Her talk moved to insurance last night. I casually mentioned that I just wish I could live in a state that mandated fertility coverage. Well she went off on how the government shouldn't get involved and it's not like I would die from infertility and that if someone can't pay for IVF that's the cards they were dealt.

Fucking way low blow on that one. I literally ran from the restaurant in tears and ended up at home sobbing.

Whatever people believe to be right or wrong for this country, that's your right. But telling a friend that well, those are the cards you're dealt, isn't really the best thing to say to someone in my position and I was deeply hurt. Again.

Now, I will at least say that by the time I got to my car, I could see tears in her eyes and she realized that she had not said the right thing, but I had to leave at that point, I just needed some space.

So, goodbye zen, hello infertility.