Thursday, April 28, 2011

Just Relax...

It is National Infertility Awareness Week. If you are one of my Facebook friends you already know that, and have been reminded about three times a day with all my posts. Now it is time to sit down and write my official NIAW blog challenge post. The blog challenge this year is to bust an infertility myth. I decided to write about the myth that annoys me the most: Just relax and you will get pregnant.

Oh, how I wish that were true. I would love nothing more than to go on a vacation have a few Margaritas (on the rocks, with salt on the rim) go back to our hotel room, get our groove on and nine months later pop out our little souvenir. Unfortunately that isn't how it works for us, and for a lot of people just like Garry and I. For us it takes a lot of hard work, pain, and sadness.

I think a lot of people in our lives just assumed we were over reacting when we started seeing a Reproductive Endocrinologist. They thought we were jumping the gun and were just impatient to have it happen. They didn't know we had been trying to get pregnant every other day for a whole year. So I would explain about the charting, the temperature taking, the inspecting of cervical mucus, the lack of any menstrual cycle for half of that year. Then they immediately decided that my uterus was just too tense. We needed to relax... take a vacation... get drunk... have you tried having sex in the back of your car? It works for teenagers!

Once you have heard these things from every close family member, friend, and coworker you start to feel ashamed and hurt. These people that you rely on for support and kindness every other day of the year now choose the hardest time in your life to give you the worst advice possible. When I was diagnosed with Crohn's four years ago no one was telling me to just relax. They all encouraged me to get more testing, try different medications. But when I tell them I can't get pregnant they insinuate it is because we are doing something wrong, we are thinking too much about it.

That isn't how it works, especially when you have gotten to the point that you are seeing an RE. Once you start doing things like Clomid, IUI, and IVF a lot of the process is taken out of your hands. Your entire reproductive system is being controlled by outside sources. Your doctor determines when you ovulate, the timing for insemination, they determine where your hormone levels should be and control them through various injections, suppositories, and patches. All you really do at that point is show up for the appointments and take the medications.

The truth is I relaxed a lot when we started seeing a fertility specialist. Finally we were getting some help, we had some hope again after a year of disappointment. An yet, a year and a half after our first IUI we still have no baby, no baby bump either. After our first IVF failed my Mom called and apologized for ever saying we needed to just relax. She realized now that we actually had something that was physically keeping us from getting pregnant. She also saw a story on Good Morning America that told of a study showing relaxation had no impact on the out come of A.R.T. It took a failed IVF and the morning news team to make her realize that this wasn't in our heads.

This is why we need more awareness. We need people to know that infertility is not a state of mind, it is a disease. If you want to learn more about infertility and the impact it has on couples and families here are two places to educate yourself http://www.resolve.org/infertility101 and http://www.resolve.org/takecharge.

Thursday, April 21, 2011

Scary Stuff...

My body has decided to revolt this week. Maybe it is fed up with all the torture I inflicted on it in March, maybe it heard me talking about starting the injections again. Maybe it just hates me, who knows? But so far this week I have had one night of insane stomach upset and nausea, random vaginal bleeding that I thought was my period but turned out not to be, yesterday I found out I have a UTI (not uncommon for me, I tend to get them a lot) and I have some skin virus that is making me break out it these ugly little dry patchy rashes. Apparently the skin virus will go away on it's own, but not before it gets a little worse and makes me look like I have leprosy.

The kicker is today I have blood in my poo. This is a side of Crohn's I have never experienced before. My Crohn's symptoms usually come in the form of extreme diarrhea, stomach pain, and vomiting. So when I went to the bathroom this morning and noticed lots of blood in my stool (clinical word for poo) I started freaking a little. I went to see my fabulous GI, Dr. W (the only doctor I like more than my RE is my GI). He thinks it is just internal hemorrhoids, which aren't a big deal. I have to go get some fun suppositories from the pharmacy tomorrow and that should take care of it. But if it gets worse or doesn't go away by next Tuesday then we will have to do a Colonoscopy. Fun.

I wish I could just have a normal healthy body for once.

Saturday, April 16, 2011

Sorry for the look...

I am in the middle of revamping the blog a little. So if the design and layout look weird for a few days I apologize, but it should look pretty damn cool when I am done.

Wednesday, April 13, 2011

What The F*ck

In the infertility world "What The F*ck (WTF)" refers to the consult with your RE after a failed cycle. I had mine today, and I am really really happy with the outcome.

I am one of those patients that most doctors get annoyed with. I research everything (Dr. Google is my BFF). I make lists of questions and I will sit there and go through every single question until I am satisfied I understand the answer and the reasoning behind the doctor's answer. One of the many reasons I love Dr. F is that not only does he put up with my questions, he encourages patients to do research on the Internet. So, instead of just sitting here with one long run on paragraph about the appointment I am just going to list my questions here and give his answers. Then at the end of the post I will tell you all what the plan is from here. So if you don't care about my questions just scroll to the bottom.

- In your experience at this office, do more people get pregnant on the second time? Or are my chances decreasing as we go? the pregnancy rates for IVF #1 and IVF #2 are pretty equal. The fairly straight forward cases tend to get PG off the first IVF, the cases where we find something during the coarse of the cycle that we didn't know about (like we did with me) have increased odds for #2 to work after a few adjustments. But if IVF# 2 doesn't work odds do start going down with every cycle.

- Lining: How has my lining been in the past, what should it be? Have I ever had the triple stripe? How can I improve my lining? (never knew the stats on my uterine lining always just heard "it looks good") Dr. F actually went and got my u/s pics to look at instead of just looking at his notes. Lining was great with IVF #1. They like to see it above 6mm, mine was 12.5mm, and the three stripes were clearly visible. He said we couldn't have asked for a better lining.

- Was I on BCP too long? Could I have been over-suppressed? Dr. F is in the school of thought that BCP does not do a lot to suppress your ovaries, it just syncs you up with other patients to streamline things (different REs have different opinions on this). However I will only be on BCP for 3 weeks before the next cycle which makes me feel a little better since I was on it for 7 weeks the first time around.

- Can we test my AMH? At this point AMH would only be useful if I was trying to decide between using my own eggs and using donor eggs. Since I know I want to use my own eggs for IVF #2 it is a non-issue. My FSH has always been fine, and he suspects my AMH would be as well.

- Would taking DHEA be beneficial for me since I seem to have some egg quality issues? Dr. F does not buy into the DHEA hype. He says that there are conflicting studies and information about DHEA and he prefers to err on the side of better safe then sorry, so we won't be using it for now.

- After my response during IVF#1 is my diagnosis the same? Do you think I have a diminished ovarian reserve or just egg quality issues? It is possible I have a slightly diminished reserve, but he wouldn't put the label on me yet. He thinks I am a "weird responder" My follicles grow great, but 50% of them were empty, and even though the follicles were the size they want them to be for ER, 75% of my eggs were immature. He thinks we need to have a big burst of FSH right at the beginning of stims, then step down as needed. He also believes my eggs are good quality, but we need to get more mature eggs to be sure. He plans on letting my follicles grow a little bigger than he normally would to try and get more mature eggs.

- Will the protocol be the EXACT same? What will you change? Higher doses? We are going with MUCH higher doses next time. The first IVF I was on 225iu of Gonal F and 75 iu Menopur, which was appropriate for the response they saw on u/s and in blood work. Knowing now that I produce a lot of empty follicles he wants to put me on 525iu Gonal F from day 1 and then step down as the cycle progresses.

- Given my horrible response should we consider the Estrogen Priming Protocol? How does the EPP work exactly? No, he does not want me on the EPP. He said EPP is for women who have issues with their lining development and who have trouble with their estrogen levels. On both accounts I am good, and increased estrogen when it is not needed can actually impede follicle growth so he thinks it would be a bad idea for me.

- Are there other methods of stimming that could help me get more eggs of better quality (ie step down vs constant)? Yes, we will be doing the step down method of stimming.

- I was on 10,000 iu HCG for my trigger, I have read that obese women should be on double the dose. Would this be an option for me? He said it could be possible that increasing the HCG trigger shot would help mature my eggs more so we will be doing 20,000 iu HCG next time.

- Do you think the fertilization rate was a egg quality issue or could there also be a sperm quality issue. Would a SCSA/DFI be use? He said my fert rate wasn't as horrible as I thought it was. This is kinda interesting actually. I only had 1 mature egg, they performed ICSI on that egg and it fertilized abnormally (had 3 pronuclei instead of the normal 2). I had 3 immature eggs. When they retrieve immature eggs they can not ICSI them because it requires stripping cells off the egg that could help it mature the rest of the way. So instead they left the immature eggs alone and put the sperm in the dish with them. Our embryo came from one of those immature eggs that matured and fertilized without help. He said there is no indication that Garry's sperm has any quality issues, and it would be a waste of money at this point to do the tests.

- Considering I am already diagnosed with one auto-immune disease (Crohn’s) would it be smart to test for other immune problems such as Reproductive Immuno-Phenotype, Anti-Thyroid antibodies, Thrombophilia, and Repeated Loss Testing (NKa etc.)? He said it is possible I have more immune issues and we are running all of the tests I listed plus some more that he added. I should have the results back in 2 weeks from those tests.

- What do you think the odds are of getting pregnant with my own eggs? He said he doesn't like putting odds on cycles, but he thinks I have a good chance of my response being better this time around, which will in turn increase my odds that it works.

- Would my sister be a good egg donor? How would that work with my insurance? What would she need to have done as far as testing to become a donor? We didn't talk too much about the possibility of using my sister as a donor, but he said that from the basic information I gave him about her it sounds like she would be a good donor for me. If IVF #2 doesn't work we will get all the testing needed for my sister to be my egg donor and then make a decision from there.

The Plan: I am taking all of April off from any drugs other than my vitamins. As soon as my next cycle starts I will call and they will have me start the Pill on CD 7. In the beginning of June sometime we will do the baseline US and blood work and I will start on 525 iu Gonal F and 75 iu Menopur. Normally you trigger when your lead follicle reaches 18mm. That was the size my follicles were at trigger, yet only 1 was mature, so this time we will wait until my follicles reach 20-21 mm to trigger in the hopes that we will get more mature eggs. The trigger dose will be doubled to 20,000iu HCG. He wants to do everything we can to push it to a 5 day trigger this time around. We both agreed that if I have 2 good embryos growing we will put both of them back, but neither of us are comfortable with 3 embryos at this point.

I am also thinking about getting a consult with a Reproductive Immunologist. Unfortunately the only one near me is almost 4 hours away, so I am hoping to get a phone consult with him sometime in the next month. Hopefully running some tests with him will shed some light on whether or not I have more issues than we currently know about. I have no faith in my immune system at this point (thanks Crohn's).

I am excited to get things rolling again, but but also terrified that I am setting myself up for another failure. But I trust my RE and really believe he is doing everything he can to get me knocked up, and at this point that is all I can ask for.

In other news: I made a decision about the Facebook coming out issue. We have decided to come out on Facebook (well I will come out, Garry doesn't want the people he works with to know yet because he barely knows most of them). However, I am not going to take the blog to Facebook. I don't want everyone in my life to know exactly when we are doing everything as far as treatments go. And since I don't want to cut down on the details or number of posts on here, I am just going to do a very generic outing. Maybe if I get pregnant I will eventually post this on Facebook because I do think it would be helpful to others going through all this, but that is down the road.

Saturday, April 9, 2011

Going Public...

I am thinking about coming out of the infertility closet. It isn't a huge secret, and I am sure there are lots of people that have their suspicions. After all, I used to talk non-stop about how many kids Garry and I would have and when we would have them. Ahhh the optimism I had pre-infertility. So I am sure there are some people that have put two and two together and saw that it added up to zero kids.

But recently I have started thinking that it is a waste of energy to try and keep it secret at all. This journey is such a huge part of my life, and outside of my family and a few close friends, I pretty much pretend like it doesn't exist. So I am debating whether or not I should take this blog public, as in Facebook public. I am contemplating posting the blog on Facebook as part of National Infertility Awareness Week (4/24-30). Last year there were a few ladies that had status updates everyday of NIAW and I so wished I was brave enough to do that.

The end of this part of the journey seems to be looming closer and closer. Baby or not, we will be done with treatments in 2011. Either one of the next two IVFs will work, or we will be living child-free until we come to an agreement about adoption. If that happens no one in my life will really know. They will all think we just don't want kids. For some reason that thought just rubs me the wrong way. I want people to know that we longed for children, suffered for them, and may never have them. I don't know why I feel so strongly about this right now, but I do. Obviously I have to discuss it with Garry first. After all we share 75% of the same friends on Facebook.

This was all to say that there may be some changes coming to the blog in the next few weeks. I will have to go through and clean up the blog a little, maybe take some of the more graphic stuff out. I would also really like to organize it better, I would love to have a tool bar at the top that has all the different posts categorized into Infertility, Baking, and Crohn's posts so it is easier to navigate. But given my very poor web skills that probably won't happen.

Feel free to chime in on whether or not you think I should go public with our journey. I always love getting advice and opinions on here.

Saturday, April 2, 2011

Moving On....

In the Infertility community there is a divide between women who are pro-pee on a stick and those anti-pee on a stick. I fall firmly into the pro column. I understand the the anti chicks, because honestly seeing those 5 negative pee sticks sucked the big one. But it helps me get past it a little faster.

I started testing way too early at 7dp3dt and when I saw the first negative HPT I just told myself it was too early and held on to the hope. When I saw the single line on Monday I thought "Wow that sucks, but it could still be early" and I cried a little because of the fear of another negative. The next day when it was still stark white I knew that it was done, but I still held a little nugget of hope for Wednesday. Then after the last pee stick yielded yet another BFN I had my complete melt down. We are talking sobbing, getting angry at Garry for no reason, not wanting to move despair. I need that time to be completely and totally depressed over the situation we find ourselves in. By the time I got the call from my nurse on Thursday I was in steely determination mode.

Now almost a week after that first HPT and two weeks after the failed transfer I have accepted it and I am moving on. It sucks, and I still get a little choked up ocasionally, but now it is all about What next. I am researching like a mad woman so I will be armed with information and questions when I go talk to the RE in a week and a half. I don't believe in doing what your doctor says without question. Not after the Summer of Crohn's. I learned then that if you don't fight for your health, no one will. I research every single drug I go on, and every single procedure that a doctor suggests. My fertility is no different.

So in the next week I will be compiling a list of things I am interested in trying as far as medications, timing, protocols etc. And I will bring every one of them up with Dr. F. And if I don't like his answers I will go some where else. I love Dr. F and his office, but this is my family we are talking about. And I plan on acting like a spoiled toddler, not resting until I get my way.