Birth Control & Belly Bruising

**disclaimer: I like to be open & honest on my blog. It's like a diary sometimes. It's not meant to offend. But be prepared for sometimes colorful language, information you may find gross, and graphic photos as that relate to infertility/reproduction** 

For your typical IVF cycle, there is like a "pre-cycle" leading up to it. Our RE described it as like a system reset. Or like rebooting your computer?! Basically you take birth control pills to shut down the typical reproductive cycle. Everything is kinda in limbo until you finish them and start the stimulation meds.

Unfortunately for me, BCP has ALWAYS made me terribly sick. Just overwhelming nausea, headaches, and it's a migraine trigger. I started out taking them at night, only to realize that was not going to help with my new Midnight work schedule. So I slowly worked them back to AM doses. I'm making it through work now, but 4pm like clock work, I awake from a dead sleep with the urgent need to puke, which I never do! I'm counting down to that last dose!!

Another unfortunate fact, I have a blood clotting disorder, Factor V Leiden, so as a precaution I have to take a blood thinner when on hormones like BCP which can increase clot risks. I'm doing Heparin 2x a day as I did in a past cycle. This should have been pretty simple. I've done them before, it's a simple process, thin med, tiny insulin syringe. Easy peasy!! Only this time I opted for a local pharmacy who had pre-filled syringes. Sounds easier right?! WRONG!! I left with a "Carpuject System" which I'm assuming was created by Satan himself! It didn't even include needles! I had to go back to the pharmacy and BUY them. Basically you add extra steps because you have to load the cartridge into the adapter & then attach your needles. This thing is bulky and the plunger is flimsy! It makes injecting super awkward!! & that first injection? Holy Shit ya'll!! The direction stated it's supposed to have an air bubble, not to tap it out! Well, I felt every bit of that "bubble" go into my stomach! & the bruising! Oh my gosh! I got bruises last time, I mean it's expected when you're actively thinning your blood. But on dose #1?! And it was huge, and black, and UGLY! 

I did have a stroke of brilliance after about 2 weeks, when I was just wishing I had some insulin syringes to draw this mess out and forget the Carpuject! I remembered a good friend and fellow "Cyster" who had sent me some leftover supplies from her last IVF, which included a bag on unused syringes for her PIO! I'm currently drawing out my heparin, swapping to my smaller needles, and my injections are back to nearly painless (it aches a bit after) and minimal bruising much more like I expected! When it's time for refills (soon!) I'll be requesting vials and syringes!! Not pre-filled cartridges! 

I also had a second fluid ultrasound of my uterus as a pre-requisit, since my last one was well over a year ago. Basically they fill the uterus with fluid so it can be seen on ultrasound & check for abnormalities. I'm very glad we did since a polyp was discovered! Having it there can cut our success rate by as much as 20%. Polyps are just masses of tissue. A lot of the time leftover from past menstrual cycles. Non-cancerous. But can prevent implantation of embryos. Luckily we can get it removed and it shouldn't effect our IVF schedule. Scheduled that for Jan 6th! Small surgical procedure, takes like 15mins. No real incisions, they'll go in vaginally & I'll be under anesthesia. More updates on that later!!

Quick Catch Up!

I've been intending to brush the dust off of our Infertility Blog for awhile now, seems it's now or never! HA!

If you don't know us personally, you've missed a lot! I'm so sorry for abandoning ship! Let's play catch up before we get to the BIG news!

March 22nd 2015 something amazing happened. Most of you who know us personally, already know that, despite completely forgetting that I had pre-registered us for another IVF seminar at our fertility clinic, (Sher Institute of Reproductive Medicine STL) we loaded up in the car, late, and made the 3 hours drive! It's so surreal! My husband, who never remembers these types of things, just woke up that Sunday morning like "um,We're supposed to be in STL today" and man was he RIGHT! See, they do these seminars from time to time at their various clinics, and they're very informative. I registered for this one because I had seen they would be talking some about NKC's, autoimmune issues, and intralipids! The first time slot had actually filled up and they had opted to open up a second sitting and then a third. We definitely were not going to make it to our original slot! By another miracle, I was able to get in touch with out Care Coordinator, despite her being busy setting things up, and get us switched to a later time slot! Each couple that attends receives a packet of information and one ticket to write their names on for a drawing.

On March 22nd 2015 our ticket drawn as the winner of a **FREE** IVF cycle!!! This is a blessing that we could never have imagined receiving. Something woke my husband up, Something told him that we had to be at that seminar! Something convinced me that we should make that drive even though it wasn't our first seminar and might not have much new information. We feel like God wanted us there in those seats. There in that moment, where he made a miracle happen. 

We are responsible for outside costs such as medications, per-requisite testing and procedures, but the IVF itself is provided! We dusted off the GoFundMe, did a few fundraisers. We have been blessed with amazing friends and family who are eager to help us. We were able to follow through on the t-shirt suggestion and I'm still in love with our design! 

 

So, now for the BIG news.... IVF is happening NOW! January 2016! More to come in subsequent posts!!

It really happened, it wasn't just a dream! You can view the video here: https://www.facebook.com/video.php?v=10152640189131761

Where we are...

I've been slacking. Trying to just relax during the cycle and not overanalyze everything or worry myself to death. So I didn't get any blogging done, so lets get everyone caught up.

Well...Due to poor cycle timing we had to do a short round of birth control, and because of my high risk of blood clots (Factor V Leiden) I did Heparin injections 2x a day. Some of my lovely technicolor injection locations! Ouch, but all for the baby right? I mean it is training. I'm going to be doing these my entire pregnancy as well.

Once the cycle got started, we did a higher dose of the Gonal F 112.5mg and we had an amazing response. At trigger time we had 2 follicles that were pretty much guaranteed and 2 more that were possibly mature enough! My lining was the best it has ever been at 11.4mm! Everything was great! We went in for the IV Intralipids, our first time. It was so weird! The liquid is actually white! It looked like milk and was soooooo cold going in. 

 Our post wash numbers ended up with about 15million sperm at 70% motility.... that is really good for us! We were very hopeful. There were alot of prayers and fingers crossed! but in the end, we still were not pregnant. So now we are on the road to IVF and we need your help again. We're starting all over and we have a bigger goal. But we are confident that we are on the right path and hopeful that we will be able to raise the funds needed to try again...

Marching Ahead...

I was able to get the fluid ultrasound last week and I'm super excited to announce that my uterus is just as beautiful as ever (seriously my tech at FAM always says that)

 

 No adhesions, polyps, or endo seen. Everything looked great.

Dr. Dayal also saw what she at first thought was a cyst, but was actually a 15mm follicle on my right ovary. It was CD10 of another 7.5mg femara cycle! We have decided not to TTC until we can treat the NK cells, so we were not going to get monitoring or anything for this cycle, but the sneak peek was exciting to see. Im happy my body is still responding well to the meds. She talked with us briefly about NK cells and their success in treating them. She also agreed to let us do our 3rd IUI there with them and the IV Intralipids. This is our last shot before moving on to IVF, but we're happy to be getting it. She said that timing is a bit harder with intralids and IUI but that we could make it work. We will being going back to injections and getting the monitoring locally (sort of, my OB is still 1 hour away) and then we will need to come in several days prior to O/IUI for the intralipid IV. Whatever it takes! We're crossing our fingers that this was our missing piece!

We also will be going to SIRM in STL on Sunday for a seminar on IVF vs. IUI. They will talk about when each one is the best option and the odds and such of each working. Lots of time for questions and Dr. Dayal said she would be talking a bit on NK cells. So we're excited to get to learn more. Oh and they give away a free IVF at all seminars!! How awesome would that be?! Maybe luck will be on our side 

 We could use some baby dust!

Snapshots of our lives...

Just wanted to share some pictures from the last year or so :)

Dead End?!

2-6-2014
I've not said much because honestly, there isn't much to say... we're at a dead end it seems and are not sure what our next move is.

Apparently my current RE (Dr. Kutteh in Memphis) "doesn't believe in" NK cells as an issue in getting or staying pregnant. He doesn't test for it or treat it. His nurse called after we faxed in our results and said they had been reviewed and Dr. Kutteh wanted to continue with our cycle as planned. I was a bit shocked since to me, that was not an option! Proceed as planned when my NK levels are elevated and we've been told that means it attacks/kills embryos!!? She said she would talk to the doctor again and call me back. Less than 5 minutes later he called me personally but was very hateful, as if it was a waste of his time to even be talking to me about such nonsense and then proceeded to make my last cycle and all of my other ones sound like complete shit. He said THAT is why we are not pregnant, it has nothing to do with NK cells. He also mentioned my BMI still being above 30 and that more weight loss could help.... When at my LAST sit down appointment he bragged super HARD on my weight loss and wanted to try the 7.5mg femara instead of injections BECAUSE it was such a good loss!! My last cycle wasn't good?! We had 3 follicles on oral meds and in my voice-mail about my P4 the nurse said "your progesterone is 15.7 which is fantastic!!" I have it saved!! He even made it sound as though my injection cycle was not ideal response wise... if it was so shitty... why didnt they say "hey your response is shit! and cancel my IUI?!?! I was told we had 2 Good follicles around 18-21 and a possible around 15/16 at trigger! (i forgot the exact measurement) I think that was a very good response! 

We are very confused at this point in time and not sure what our plans are. Except that we will not be back to our current RE. Ive always liked them, so this actually kind of hurt! We will see Dr. Dayal for my Fluid ultrasound on the 13th. And we will talk to her more about the results and what we can do outside of IVF. But my understanding is that SIRM only does IVF cycles.

Update: 2-10-2014
This morning Dr. Kutteh called me singing a very different tune. He still does not believe in NK cells as an issue in pregnancy and miscarriage/implantation failure. But he wanted to review my results again and was very polite and friendly. He said that another patient had gotten some sketchy NK test results for free and now the lab was wanting $1800 for further tests. I told him that wasn't the case for us, but I do appreciate that he thought of us and wanted to be sure we were not in the same boat. He talked to me in a much friendlier tone about why he feels the way he does about NK cells and honestly, he has some valid points. He says that the research is all very new and controversial at this point. There are studies supporting both sides, but he is not convinced. He says in tests on women who have had a miscarriage it is true that results often show elevated NK cells, but that it can not be proven what came first. Are the levels elevated because of the lost pregnancy and the body responding. Or did the body attack and cause the miscarriage because of the elevated numbers. He also says that you can not differentiate between overall NK blood cells in the blood and those within the uterus. He feels that we have made a lot of progress and are on the right track, he doesn't want us to waste time chasing after this. He also said that if we wanted a second opinion he would be glad to refer us to someone for one.

Im not sure who or what we believe. We feel like Dr. Kutteh has made some valid points and I do appreciate that he took the time to call me this morning and was much more clear and polite. Im not sure If that is enough to make me want to continue cycles with him after the conversation on Thursday.

We do plan to talk with Dr. Dayal and get her thoughts, treatment options, information etc from someone who DOES believe in NK cells. We want her side of the story and what research supports this. I know our own personal research showed a lot of women with recurrent losses in the past having a successful pregnancy after treating the NK cells with intralipd infusions or steroids.

We have made the decision to go ahead and start femara this month, better late than never? It is CD7... not sure how this will work out, but it can't hurt! And we will see Dr Dayal for her side of things prior to ovulation. If we are convinced this is an issue for us, we can skip BD and just let the cycle work itself out with no chance of pregnancy. If we are not convinced, we will do TI at home. 

*Insert something catchy here*

Yea, I've got nothing on the whole "catchy title" front.

Today we finally got the results back on our Natural Killer Cell test and it was not the news we were hoping for. My count was 11.7
Ranges are:

Less than 8.5 - normal
8.5 to 10 - borderline
Above 10- abnormal

So basically, my body is preventing embryo implantation or attacking pregnancies because it sees them as a threat, like an infection or foreign body.

When we were told about autoimmune issues/NK cells and the test was suggested, I was interested and a bit relieved to have something new to test for. I felt reassured because Dr. Dayal was able to lay out the treatment for us. I really thought I was prepared for this. I spend a lot of time wondering WTH went wrong and how we are not pregnant when everything seems so right with a cycle. We just went through that this cycle.  

But I'm not sure I've ever been so wrong. I was anything and everything but relieved when I was told we were positive for this. I felt like I had been punched in the stomach. I wanted to puke. I wanted to cry. And my mind immediately went to "OMG how many babies has my body killed in the last 4 years??" I know that this is irrational and that we can not focus on thoughts like that. We can't worry about things that we can never know. But the idea that my body is attacking potential babies is beyond heart-wrenching. I can not even put into words how this makes me feel.

Every month that we get a BFN, it feels like I'm mourning the loss of what could have been. But we have always have the hope that we can try again. And we had made some pretty big steps forward recently. I was responding to oral meds, no need to do injects again in the near future, and my husbands SA was better so we were content to try IUI again. And we are always hopeful in TI cycles that maybe, just maybe, we will have one of those miracle cycles and get pregnant naturally. And now I think i'm mourning the loss of that?! I mean that is impossible now. My body rejects/attacks/kills pregnancies. It just feels so hopeless right now.

I know that there ARE treatments for this. SIRM in STL treats with intralipid-infusions prior to embryo transfers in IVF cycles and then again with a confirmed pregnancy. Sometimes more during the pregnancy as needed. But my understanding is that they only do IVF. And we are not ready financially to do that. It could be a very long time before we are. I have put in a phone call to my current RE in hopes that they have a similar plan of treatment that we can do with IUI. However, their website is concerning since they list the POA for autoimmune issues as "heparin and baby aspirin" I can not wrap my head around how this could possibly help me?!

I do plan to ask SIRM about treatment for the NK w/o doing an IVF cycle when we go there for the fluid ultrasound on Feb 13th. I also plan to hear my current RE out on how they would treat this & if the plan is in fact heparin, I will be bringing up intralipids. I hope that something works out for us somewhere.

But tonight my head is spinning with worst case scenarios and I just want to crawl in bed and never come out. Right now this feels like "the end" and like maybe we are out of options until we can afford to pay for IVF. Right now.... we need prayers. Lots of them.

Also, right now we need patience and understanding. Please be patient with me as im trying to process something that to me is tragic and life altering. Please be understanding that this isn't something I feel like I can just tuck away and worry about at a later time. Please don't try to make me feel like this is not a big deal or can be easily fixed. "It's treatable" is not a consolation. Please do not imply that this can be fixed with a little bit of religion and a hug. We appreciate prayers. And I always appreciate a big hug. But please just understand that those are not cures. If you don't know what to say... just say that. I don't know what to say either. I honestly don't know that anything could make me feel better.

Right now I am scared and heart broken. I'm not okay... and sometimes it is OKAY to not be okay.