Friday, April 30, 2010

RE Appointment

We love Dr. Z! He seems really great, and he took over an hour to just talk to us about anything and everything. He was very open to express his concerns and his optimism...I loved that.

So he asked right away why we were there. For some reason, this question I wasn't prepared for. I jumped right into my synopsis of "me" and all of the hurdles and hiccups it's taken to get me from point A to point RE. I went over the stage 4 endo, the Hashimoto's, the laparoscopies and bad fallopian tube, and the trouble coming off of birth control. He started reading over my forms and noted the key points he thought would be important to discuss. I brought all of my old medical records and he looked at the most recent laparoscopy, the day 3 blood work I had done with the previous RE, and that RE's notes.

Here were his main concerns about me:

1. The lap showed not only a bum tube, but also damage to both of my tubes from scar tissue.
2. The last RE did two ultrasounds, both of which could not locate my left ovary.
3. The scar tissue present in my last lap could be a big problem with the retrieval because it may be difficult to reach the ovaries.
4. Endometrial tissue is infiltrating my ovaries which means those toxins have a good chance of reaching my follicles and eggs.

Things he's optimistic about me:

1. I'm young!
2. My day 3 blood work showed "good" numbers for FSH.
3. Hysteroscopies from the past did not show any significant problems with my uterus.

Next steps for us:

1. Stop birth control today in order to start AF.
2. Call Dr. Z to schedule ultrasound and bloodwork/B's tests on first day of AF for day 3 of AF (probably early next week).
3. In addition, schedule testing for after AF stops (start birth control immediately after initial testing): Hysteroscopy (ouch), Trial Transfer (yay!), blood work. Schedule follow-up consultation as well.
4. Start pre-natal vitamins.
5. Check insurance coverage for Cystic Fibrosis screening.
6. Plan for IVF in JULY!!!!

Once we have these tests completed, we can begin with our actual planning for the IVF cycle. That's when I'll be asking the more detailed questions (exercise, alcohol, side-effects, etc).

We learned that our insurance does NOT cover the shared-risk program, so we'll be going one cycle at a time. We have incredible coverage though and only have to pay 10% of all infertility treatments and 30% of all out-of-network lab work (they do their lab work in their own lab). We'll have to pay extra for freezing additional embryos and if we find out that there's a male factor (something up with B's side of the deal).

It's all very exciting! July, here we come!! Now to get working on some acupuncture...the doc recommended it- I'm gonna go for it.

Thursday, April 29, 2010

Questions to Ask About IVF

I've been on the hunt over the last couple of days, searching for good questions to ask the Reproductive Endocrinologist the first time we meet him. I've never been through IVF, I'm very new to the process...I'm really just interviewing RE's at this point. There's a lot I need to know, I'm just not sure what. So after doing some research, here are some of the good questions I think I'll bring up:

1. What are the side effects of the medications? It is important to understand what all of the medications are used for and the possible side effects. The clinic should be able to provide you with a detailed description of the purpose of each medicine you take, along with the side effects of each medicine.

2.What are the steps in the procedure? Fertility treatment procedures are stressful. Learn as much about your treatment schedule as possible. If they don't provide a schedule, ask for a calendar of your medication schedule, dates of appointments, and activities to be performed at each appointment (blood draw, retrieval, injections, etc.). It would be especially helpful if this is in written form for you to take home and read.

3. Who will be our point of contact? Learn who will be answering your questions. The nurse might be able to answer questions about medications, and the doctor will answer other questions. If you know the right person to contact, you'll be more likely to get a quick response. Have them describe how office communications work during your procedures.

4. Who performs the procedures? During your testing and actual fertility treatment you'll be poked and prodded. Determine who will be performing which procedures so you know when you'll be interacting with your RE and when you'll be interacting with the RE's colleagues or the nurses.

5. How many embryos do they transfer during an IVF cycle? Each doctor has a different protocol and the number of follicles or embryos transferred for each patient might also differ.

6. What are the chances of twins or high-order multiples? What percentage of their procedures result in twins or higher? This includes both the chances of having a twin or high-order multiples (triplets or more) pregnancy as well as the health risks to the mother and babies involved with such a pregnancy. The risk of having twins or high-order multiples is fairly high with IVF or IUI procedures. This information might be available on their website. Know your risks and be prepared for them. For example, twin pregnancies are considered high-risk because one in three results in premature birth.

7. What would cause the treatment to be cancelled? You'll want to know the possibilities that a cycle could be cancelled. Some women have their IVF cancelled because they responded poorly to the medications or because they developed cysts from the medications. It's best to be prepared and know possible reasons this might occur.

8. Do they encourage or recommend alternative medicine? Studies are proving that acupuncture, massage therapy, homeopathy, Reiki, and other forms of alternative medicine can increase the success rate of fertility treatments. Does your doctor have a referral list for these types of practitioners? If they do not encourage complementary medicine, will they nonetheless try to coordinate with your alternative efforts? This is important to know as some REs discourage use of alternative medicine.

9. What success rate does the doctor give us with our particular case?

10. What other factors outside of endometriosis will come into play? (Hashimoto's disease, pit tumor, cortisol...) What do we need to do to make sure all of these are in check?

11. What will insurance cover and what will be out of pocket?

I'll post more if/when I come up with them. Can't wait to post an update after the appointment in the morning...

Wednesday, April 28, 2010


I faxed the medical records to the insurance company and it worked this time. Thank goodness! And don't worry, I also faxed in my driver's license, confirmation of payment, and traffic ticket to the online driving school (#2 on my To-Do list...) So now that that's done, it's off to make a baby! ;)

To Do Lists

I'm getting anxious about the appointment this Friday. I think one of the big reasons is the "To Do List" I've got going right now. Number 1? Fax my medical records to the insurance company to get approved for the "Infertility Program". I tried faxing them a couple of days ago but the number was busy... and I'm doing this at work, so it has to be on the sly. Frustrating.

But apparently we have great coverage if I get accepted. And with the two laps showing stage 4 endo, it shouldn't be too difficult. The financial side of the IVF is still a little boggling to me. Some doctors have this "Shared-Risk" program where you pay upfront for several rounds, and if they don't work over the course of a year or so, you get your money back. Sounds pretty great! Unless of course it works the first time...then you have to pay the full price for the "several" rounds. I'm not that optimistic about it taking right away (just hoping).

I talked to the insurance company about it and they said shared risk programs aren't covered by insurance. I don't buy it just yet, I'll keep doing some digging. But even with our supposedly great coverage, we've got a lifetime limit of $15k for infertility...that can add up real fast. We're not looking at too many rounds there. The shared risk programs are usually about $25k up front.

I'll post more about the finances aspect once I understand it a little better. That'll be one of the questions I ask Dr. Z on Friday. Ah, the To Do List... Number 5 is write my list of questions. Hopefully I can get to that today.

Monday, April 26, 2010

Reproductive EndoWhat? Continued

So I had my second laparoscopy three years after my first, and all of the endo had grown back, plus some additional adhesions. Stage 4 endo again. But here's the fun part...

My surgeon told me after the first surgery that these laps would remove the endometriosis and eventually allow for me to try to get pregnant naturally- off of all birth control or hormonal therapies. Well, I guess that made me think that I could take a break from the birth control after this surgery without any complications. I'd been on the pill for seven years with awful break-through bleeding, sometimes months of bleeding at a time. I wanted a little time off. Just a little while of natural living. So I went about 10 weeks with no pill for the first time in years. Big mistake. Big. Huge.

After about 10 weeks I started getting sharp stabbing pains up under my rib cage on the right side. The pain referred up into my right shoulder like the gas pain after the surgery. After a hospitalization and several lung function tests, it was concluded that this might be endometriosis on the lining of my lung or on my diaghram. A few weeks after this pain started, I got severe lower abdominal pain again. Then the fatigue. Weakness. Just all-over awful pain. It was pretty obvious the endo had grown back...I never thought it would come on that hard and that fast. A good lesson learned.

A little while after this, I discovered some additional health problems. The possibility of a pituitary tumor. Questions of Cushing's Disease (diagnosed then undiagnosed three times). Hashimoto's Disease. I went on Lupron to try and relieve the endometriosis (not a very nice drug for those of you who may be unfamiliar). I stayed on it for three months, couldn't make the full 6 month cycle. I gained thirty pounds. I was a crazy person...literally.

Luckily I had found an amazing man to share my drama, and my life with. He popped the question a couple months after I got off of Lupron. If he could make it through the Lupron, he was a keeper for sure! ;)

Several months later, B and I went to see a Reproductive Endocrinologist (RE) to find out about our "chances" and learn a little about what family planning would look like for us. Not the greatest news. The doctor explained that with stage 4 endo, I've got about a 1% chance of conceiving naturally in any given month. Add the Hashimoto's disease, the pit tumor scenario, and the fact that one of my tubes was not functional after the last surgery, and the doctor said 1% would be lucky. But the most important conclusion was the lesson we learned after I stopped birth control for just over a couple months. The RE felt that my endometriosis is incredibly agressive. He would be too concerned to take me off the pill for long enough to try naturally with the damage the endo could do to my reproductive organs. Each month without hormonal therapy could damage my ovaries and tubes for the long haul. Not a good risk to take. So...IVF was our only option. That's a hard pill to swallow two months before your wedding at 26 years old. Aren't you supposed to try for years before moving to something like IVF? Nope. I've learned quite a bit about this lovely little technology. And...I'm excited to even have an option! But seriously, a hard pill to swallow (literally- taking a birth control pill every morning that prevents me from getting pregnant when what we really want is to get pregnant. Quite the hard pill to swallow...)

We have an appointment this Friday for a second opinion with a doctor that helped some friends of ours bring twins into their family a couple years ago! He's supposed to be pretty good...and B didn't really like the other RE from before the wedding. We spent 6 months after our honeymoon chilling out, decorating our house, just being married for a bit. I know we'd wait longer in a perfect world. But we both really want kids, and we wouldn't be waiting too much longer anyway. So, with the chance that this could take some time...we're off to start a family!

There will be big bills, lots of needles, roller coasters of emotion, fighting, crying, and hopefully in the end...hundreds and hundreds of dirty diapers. But it's a long road. I hope you join us in our journey. Hopefully our lessons will help others out there, and maybe we'll learn some from those of you who have been there too! Wish us luck as we wish for twins! Hey, two for the price of one...right? ;)

Saturday, April 24, 2010

Reproductive EndoWhat?

I'd like to say that I'm new to all of this. It'd be nice to sit back and watch this all unfold with innocent wonder. But instead I've been planning the journey we're about to undergo for years. Unbeknown to anyone else, of course. But I had to be ready myself.

Infertility. What exactly does that mean?

not fertile; unproductive; sterile; barren: infertile soil. "

They compared me to bad soil. The kind that ruins farmers' lives I'm guessing. I don't know a thing about soil. But I do know what unproductive means. I've done that before. Kind of like procrastinating without actually finishing the ultimate goal. Or laziness. So is that what I am? Biologically or reproductively lazy?

When I was 18, off in college, I started birth control pills. I was a virgin. Had no plans of changing that anytime soon. I started these little 'fix-its' because of pain. Since about 14 I had a serious pain problem every month or so. Luckily (?) my dear Mom had some experience with similar symptoms. She had a hysterectomy at 29...

I was unofficially "diagnosed" with endometriosis around that sweet age of 18. By 19 doctors started telling me that I should try to have kids as soon as possible. I switched birth control every 6 months trying to find one that would work. I was, let's say, "moody" at this time.

I swam in college. I was good at it. No seriously, I was pretty good at it. I even had a future in it if you can have a future in swimming. At 19 I found myself being carried by my coaches to the hospital due to ovarian cyst ruptures on two separate occasions. I was a freshman on the swim team- not the low maintenance freshman that you want to be on any college team. I had to be "special" in a very bad way.

This went on for a few years, my entire college swimming career really. I found a couple of different pills that worked for me for a little while. Surgery was talked about frequently- to officially "diagnose" me (you can't diagnose endometriosis without going in and actually looking). But I was swimming. Surgery was reserved for athletic injuries only (which I had a couple). Finally, after my senior year, we went in for the real thing.

Stage 4 endometriosis.

"The Stage or Severity of Endometriosis

Doctors commonly diagnose endometriosis in stages. Here are the common stages of endometriosis:
Stage 1: Endometriosis in stage one is classified as minimal. Most patients will get a score of 1 to 5 points, meaning there are isolated incidents of endometrial tissue growth outside the uterus.
Stage 2: Endometriosis in stage two is considered mild. A patient having a score of 6 to 15 points has mild endometriosis. A doctor makes this diagnosis when there are several small implants and a few small areas of scar tissue or adhesions.
Stage 3: Stage the endometriosis is moderate. Patients with 16 to 40 points have moderate endometriosis. The implants in stage three must be superficial and deep. There must also be several prominent areas of scar tissue or adhesions. Typically the symptoms of endometriosis are common in patients with moderate Stage III endometriosis.
Stage 4: This is the most severe stage of endometriosis, with over 40 points needed for diagnosis. Patients with stage IV endometriosis will have many superficial and deep implants as well as large adhesions. Endometriosis symptoms including infertility are common in patients with stage IV endometriosis. "

So we knew that it would be a long road from there. Shocker. But my surgeon was optimistic that he'd removed almost all of it. That he could perform another surgery before I wanted to get pregnant one day. That I'd be ok.

I kept living. After a long recovery, things were good. Stable-ish. Then I met B. After all of the "frogs" out there, he was a breath of fresh air. My prince. I fell in love and started thinking about that pesky "future". A few months into our relationship, I went back in for a second surgery. Stage 4 endo again- it had all grown back in about three years.

This is where the tricky part begins. Read on friends...