Should I Stay or Should I Go?

Just when I think that I have everything on track and planned out just right, I encountered yet another little hiccup -- but this one wasn't necessarily a bad one. I had my second opinion consult with Dr. Preston Sacks of Columbia Fertility Associates today. I had actually considered canceling since I felt that I was on track with Shady Grove. Plus, my husband, who has felt more strongly against me going to Shady Grove, was not able to accompany me to today's consultation. However, since it was the day after Labor Day, it might have been too late to cancel without incurring a cancellation fee. So, I decided to just suck it up and go -- it couldn't hurt to hear what another RE had to say, right?

The office is located in downtown Washington, DC, near the George Washington University and Hospital. It is not large nor fancy. The receptionist was pleasant and I immediately felt at ease while sitting in the waiting room. In addition to having completed an extensive amount of forms prior to my appointment, I had emailed an excel spreadsheet that contained a summary of my test results and protocols to date. Surprisingly, Dr. Sacks took the time to review my spreadsheet before I met with him and he was in the process of printing the worksheets out when I first came into this office. We introduced ourselves and then discussed my TTC journey to this point. While I obviously expected him to be very well versed on my situation in general, I must say that I was also very impressed with his knowledge of other things, primarily Fragile X ranges and implications and how having Fragile X could be related to Premature Ovarian Failure. I also liked the fact that he is not a fan of using birth control pills prior to an IVF cycle. I told him that SG puts all of their IVF patients on BCPs prior to a cycle because they help to "quiet" the ovaries and make sure that there are no cysts. Dr. Sacks told me that while that is true for about 80% of women, there is also a 20% chance that the birth control pills actually cause the cysts, which I figured was what happened to me. I explained my cyst theory to Dr. Sacks and he basically told me that I was spot on in my thinking and that he wished I could explain that theory to his patients.

Dr. Sacks then proceeded to give me what I've come to learn is the standard RE explanation of how our bodies work and what stims are supposed to do (he joked that he was fresh and ready to go since he just got back from being out of town for a few days) and then we started discussing protocols. While Dr. Sacks told me that he's not really sure if the protocol really makes that much of a difference (I inferred that he was implying, similiar to my thinking, that it's more dependent on how a woman's body chooses to respond to a particular protocol at a particular time), he is not a fan of the Microdose Lupron (MDL) Flare protocol because ovulation can not be controlled as well as it can be on a Ganirelix protocol (which was also one of my concerns since I feel that I ovulate early). He said that his practice relies primarily on the Ganirelix one (for people like me, I assume) in conjunction with estrogen priming.

Dr. Sacks told me that he would do a sonogram on me to check on the status of my cyst. If it was gone (and if I chose to switch practices), he would have me stop the birth control pills and get me started on stims right away!! We then kind of went on a tangent and started talking about my education, my job, Miami, Vegas, Japan, sushi and other random things for about 5-10 minutes and then he surprised the heck out of me by saying something like, "ok - let's go and see if we can figure out what's going on." He then led me down the hall to the sonogram room! I didn't realize that he was going to do the sonogram right then and there, but I was very pleasantly surprised that he was ready to get down the business, even though I hadn't yet decided if I was going to stick with Shady Grove or not.

There was another nurse who was in the room with us to whom he introduced me. She also seemed pleasant and friendly and he even pointed out that she pays very close attention to details, as well. He described what he saw to both her and me. Surprisingly, my cyst was gone (hooray!), but (and I should have been prepared for this), it looks like there is another possible cyst brewing now on my right side. Sigh. Dr. Sacks told me that this proves even further that these birth control pills are not for me. He said that if I decided to start to see him, he would keep me on the birth control pills for a few more days - if that large follicle on my right ovary continued to grow, he would have me stop taking the birth control pills, allow my body to ovulate, and then start the E2 priming. Once my next cycle started, I would be able to start stims right away. If a cyst was present, he would aspirate it and then we could begin. (Hopefully I understood all of that correctly).

So, what's next? Dr. Sacks told me that I could do whatever I felt most comfortable doing -- if I wanted to stick with Shady Grove and just share the knowledge I received with Dr. Mottla, that was fine with him. I told him that while I really do have a high level of respect for Shady Grove and do feel that they are very good at what they do - for the majority of women who do not need specialization - I have not felt that they have been able to give me that level of personalized treatment that my case needs. He advised me to talk things over with my husband and go from there. I told him that I would do that, but that my immediate next step would probably be based on how difficult it would be to switch my insurance coverage from one clinic to another since I have approval through the end of October for Shady Grove. He told me that he can have his people call my insurance provider to see how difficult or easy it would be to switch at this point.

I guess through the course of this post, I've made my decision. I will switch clinics now IF my insurance company makes it easy to do so. I was pleasantly surprised to learn that if I wanted to switch to Columbia Fertility Associates that I nor my husband have to go through the whole battery of testing again, nor would we have to wait another two cycles or so to get started again. It was also refreshing to not be directed to the financial counselor's office right after my consult with him.

So now, I wait until I hear from the insurance company. Don't you hate that the insurance companies seem to have all of the power?

Pre-Party Time!

I got AF on Saturday and went into today's ultrasound with Dr. Mottla with a lot of optimism that my cyst was history. To my surprise, the damn thing was STILL there! Dr. Mottla believes that it's just filled with fluid and not blood - I suppose that's good news. However, despite nothing happening cyst-wise, I was encouraged by the fact that I actually DO get to proceed with IVF # 1 in October. I'll take the birth control pills for yet another 21 day period to see if we can combat the cyst that way (which I doubt we will), but if it's still there at my Lupron evaluation, I will need to schedule an appointment to finally get it aspirated and then I can begin my stims immediately afterwards.

What's interesting is that Dr. Mottla is going to put me on the MDL Flare Protocol this time. I'm not really sure why he decided to switch me from the Ganirelix Protocol since I never really got a chance to see how my body was going to respond to that protocol. I'm a bit concerned about this protocol because it seems that a good number of poor responders did better on the Ganirelix protocol. However, I wasn't really looking for MDL Flare success stories then, so maybe there are just as many, if not more, success stories on this one. I actually did ask him why he put me on the MDL Flare and he told me it's "because it's the strongest one [they] got." Hmm. Now I have to spend time googling this protocol. I won't invest any time or energy in the differences because it really doesn't matter, does it? But I'ld like to know what to expect from this protocol before I start - so I suppose that will be this evening's project.

Here's what I can expect:

08/31/09: Start BCPs (21 days)
09/21/09: Lupron Evaluation
09/23/09: Start MDL - 20 units BID (and Children's Aspirin)
09/25/09: MDL - 20 units BID; AM-Follistim (300); PM-Follistim (150); Menopur (150)
**Rest of stim schedule TBD**
10/07/09: Estimated ER
10/10/09: Estimated ET

I feel good about this upcoming IVF - I really do. October is a good time to get pregnant and it falls in perfect alignment with my busy schedule. When things are "easy," that's when the time is right!

Sidenote # 1: I got AF two nights after my last Provera / Progesterone pill.

Sidenote # 2: My mammo results came back A-OK!

Now What?

I'm getting frustrated. I had my botched IVF follow-up appointment with Dr. Mottla today. They took some blood (to check my E2 and progesterone levels and I asked them to throw in a TSH check, too) and performed an ultrasound. The ultrasound revealed that I still have that damn cyst. I kind of figured it was still there. I'm on CD22 and doubt that I've ovulated yet because my temps haven't gone up, nor have I gotten a peak reading on my fertility monitor. I'm pretty confident that this delayed ovulation is due to either 1) the fertility meds I was on at the beginning of this cycle or 2) the birth control pills caused my body to not know what to do.

Dr. Mottla told me that he's going to wait to see what the bloodwork reveals, but he's probably going to prescribe Provera for me to kick-start AF and then have me return on CD3 for a baseline appointment. If the cyst is still there, he will put me back on BCPs for another month to see if that combats the cyst. However, considering I was on them last cycle when this cyst formed and considering doubling up the dosage of BCPs when they found the cyst didn't do diddly, I don't understand how putting me back on BCPs for another month will get rid of it, but that's a question for another day. When I asked him why he wouldn't want to aspirate it, he told me that they try to be as minimally invasive as possible (sound familiar?), but if it was filled with fluid (and not blood), he would consider doing it. I don't know how they determine a cyst's contents, but that's yet another question for the future. Dr. Mottla told me that he will personally call me back this afternoon with my bloodwork results and probably just tell me to take the Provera and come in on CD3 and we'll go from there depending on what my body chooses to do.

So now what do I do? Should I take the Provera or just let my body do her natural thing for once? If I were to follow Dr. Mottla's plan and go back on the BCPs, I won't be able to start my IVF cycle for about 5 weeks (2 weeks to get AF and 3 weeks of BCPs), which puts me at the end of September or beginning of October (and that's IF the cyst has gone away). I have an initial consult with Dr. Sacks at Columbia Fertility Associates in the beginning of September. Maybe I should just rack up my experience at Shady Grove as a learning experience and move on at this point - especially since I won't be able to get started again until October at the earliest. In the meantime, I can try to just see an acupuncturist and hope that he can get my body in good shape for the next round of infertility treatments - whenever that may be. I'll get it figured out - I always do and things work out just fine.

However, I do have some other possibly concerning news to add to my mix of issues - Yesterday I had my annual mammogram. (I had to start getting them two years ago at the age of 35 because my mom was diagnosed with breast cancer in her early 40s (or was it her late 30s?). She had a complete mastectomy and she's been cancer free ever since). The tech told me that I have very dense breasts. I'm not sure what that meant, other than she had to expose me to more radiation. She also had to take an extra picture of my right side (I had to be called back so they could rescan that one two years ago because they couldn't tell if I had something to be concerned about or just this dense tissue). She told me that the breast doctor will be there tomorrow to review my results, but I didn't like the look on her face when she told me that. I need to stop googling. The first two hits that come up about dense breast tissue are 1) dense breast tissue hikes risk of cancer and 2) Premenopausal women, especially women who have never been pregnant, may have dense breast tissue. I'll just wait for the doctor's call. However, a good number of my Fertile Thoughts High FSH friends have been posting that they, too, have been told that they have dense breasts and are cancer-free. However, this could lend to a link with our probems in TTC. Interesting.

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Just got the bloodwork call from Dr. Mottla: I didn't O. Uh, yeah - I knew that. P4 was .4, E2 was 504 and TSH was .4 (that's on the low side now, but he's satisfied with that since he'd rather have it be lower than higher since it increases during pregnancy). He's calling in a script to the pharmacy for Provera. So I get to join that happy train. I'm supposed to return on CD3 and Dr. Mottla wants to be there personally for that appointment, as well. So, at least I'm getting that personal touch now, which is nice.

Phone Consult with SIRM

I had a really productive phone consult with Dr. Albert Peters of SIRM (Sher Institutes for Reproductive Medicine) this afternoon. He was very personable and let me ask as many questions as I needed to ask him. After I provided him with my a summary of my medical history and a more detailed TTC history, he told me that he would put me on an LA8E2V or LA10E2V protocol. These protocols are basically the same with the exception that the LA10E2V uses a higher does of stims. The letters correlate to Lupron, some sort of Antagon med (e.g., Antagon or Cetrotide), and Estrogen. Each of these drugs would be administered prior to starting a rather aggressive dose of stims (between 600 - 750 IUs/day). I just realized that he didn't tell me what the V represents. This protocol sounds similiar to the MDL flare protocol and I'm wondering if this protocol name is a name that is used just within the SIRM network. I'll have to consult Dr. Google for some more information on this.

When I told him that my RE wanted to put me on the Ganirelix Acetate protocol, he said that his practice typically doesn't like to use this protocol because the Ganirelix has to be administered at the right time - it can't be too early, nor can it be too late.

The conversation was very informative and I really appreciated his taking the time to talk to me, even though I'm not his patient. I like that SIRM also puts a lot of emphasis on immunological testing, which makes sense if you want to make sure that you have the best chance for a successful pregnancy that makes it to term. If I lived closer to an SIRM location (and if I wasn't worried about any insurance transition headaches), I think I probably would change clinics - mostly for the personalization aspect:

Why Choose SIRM?

Despite my frustrations with Shady Grove up to this point, I am willing to continue working with them - at least until I can actually make it to an egg retrieval. They have great success rates, a top notch lab, and I have developed a better working relationship with the staff. I am hoping that now that they know me on a more personal level, they will be more on top of things and not let things fall through the cracks. My RE has started to show that he is more invested in my success, so that's a good start - I just wish it didn't take a year of TTC. I hope that he will be able to be more personally involved in and in charge of my treatment decisions. Having at least five other doctors' input, who don't even know what my diagnosis is or the journey I have traveled so far, simply can not be effective.

I am trying to give Shady Grove as much credence and faith as possible. One thing that concerned me about Dr. Peter's suggestion is the high dosage of stims they would use on me. My research has led me to believe that, in most instances, anything over 450 IUs/day is ineffective. So why inject so much more into your body if it's not necessary? I actually did better when I was on 225 IUs/day of Follistim for my first IUI than I did when I was on the 300 IUs/day of Follistim for my second IUI. I think the general dose won't make that much of a difference - it all depends on where you body is at the beginning of a cycle to know if it's going to respond well or not. Shady Grove doesn't go over 450 units - SIRM would put me on something between 600-750 units. I think I'm starting to see a trend with Shady Grove - and it's not necessarily a bad one (unless you don't have much time left). I think that they do not like to be too aggressive unless they simply have no other alternatives. That's probably why they didn't do anything about my TSH level or aspirate the cyst right away. It seems that they like to wait and see if our bodies can naturally take care of stuff before forging ahead because, in most instances, things will work themselves out. I can actually see the benefits of that because you don't want to put yourself through stuff unnecessarily if you don't have to - unfortunately it looks like in my case, we may have to do so.

IVF # 1 - SD7 (CD6) - Cancelled

My check-up with the RE, Dr. Kiperstock, went as well as can be expected since I knew going in they were going to cancel this cycle. [Sidenote: While he was very plesant, conveyed a lot of compassion and understanding, and gave me plenty of time to talk and ask questions, I was a bit taken aback at how little he knew of my protocol and history. He asked me something about the Lupron I took (I'm on the Ganirelix Acetate protocol) and had to look up my diagnosis. I thought that the SG REs all got together to discuss at least some of the cases, but apparently they don't (or they just haven't discussed mine). Anyway, since I know all of the details of my file, I was able to bring him up to speed pretty quickly and we went from there].

So, back to the story. While the cyst seems to have gotten a bit smaller, Dr. K thinks (as do I) it's for the best that we start fresh after AF. I actually asked Dr. K today why they did not re-test my TSH prior to my first attempt at an IVF cycle. I also asked him why they did not just aspirate my cyst at the beginning of this more recent IVF cycle attempt. He basically expressed that they try to be as minimally invasive as possible (I guess because in most instances just waiting to see if things right themselves on their own usually works), that hindsight is 50/50, that ART is an art (my words, ha ha), and that they are trying their best. He also apologized, which I really appreciated. He recommended that I wait for AF, see if the cyst goes away, and then get started again. If the cyst is still there, they will aspirate it at that point and then I can get started again. The only problem is that DH and I have booked a few trips in the fall and winter, so cycling will have to work around our schedules. I will not let TTC interfere with our daily lives - it's already gobbled up so much of our time.

I guess the nurse emailed my RE, Dr. Mottla, who I think is on vacation, and he asked her to schedule me for a consultation with him for an ultrasound and bloodwork in two weeks. I'm actually happy about that because 1) I get to see my RE for a de-briefing session and 2) I'd like to know if the cyst has gone away because I'm a bit worried that it could be a sign of something more serious.

My DH wants me to have a consult with a new RE. I'm torn because SG has really stepped up the level of caring and compassion and cycling there is so convenient for me. Plus, I have all of my insurance ducks in a row and I don't feel like having to go through all of the initial testing and providing my medical and infertility history from scratch. I really do think that SG is great at what they do - their success rates are excellent, they've got top notch REs and a state of the art lab that comes highly recommended - it's just that due to their size, they may let things unintentionally fall through the cracks and for special cases (yes, I will be egocentric because I believe I am a special case), they really need to be on top of their game with all of the details.

Anyway, I actually feel at peace today because this cycle was a bust from the start. One of these cycles WILL work. It just sucks that my first one was so crappy because I really wanted to know how I was going to stim and I still can't assess that because of the interference from this cyst. In the meantime, I will enjoy not stimming or being on BCPs and simply enjoy life. Our time will come. In the meantime, I have been extremely blessed and I will take some time to appreciate those blessings.

IVF # 1 - SD6 (CD5) - Spoke Too Soon......

Well, it looks like this cycle could be a bust. There was no growth in those three unmeasurable follies on my right and my cyst has gotten bigger. I KNEW they should have aspirated it regardless of my e2 level after the double-dose of BCPs - it seems like it's gobbling up the meds.

Now maybe I shouldn't jump the gun because I do need to wait for my bloodwork results, so I'm not positive if they're going to cancel me or not. I would assume they would because the cyst is growing. If that damn thing wasn't there, I would want to continue to push forward (considering I'm a poor responder), but I really do think that that's the culprit. This just steams me SO much more that they didn't have my TSH under control last month b/c I had no cysts and things were perfect. Grr. And I can't cycle now until MAYBE October because of scheduling conflicts. Double Grr. I feel like I'm truly runing out of time.

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Update: I just got a call from one of the nurses (well, I think she was a nurse - I never had heard of her before) - I take my meds tonight and tomorrow morning and then go back in again tomorrow morning. They want a doctor to see me so he can get a better "eye-ball" of what to do. My E2 was 325. I really wish they wouldn't keep drawing this out, or at least explain their rationale as to why I have to keep going. The only thing I can do at this point is wait and see what tomorrow's ultrasound reveals and what an RE has to say.

IVF # 1 - SD4 (CD3) Bloodwork and Ultrasound - Still in the Game

I went to the Rockville Shady Grove office yesterday at 11:00 am for my first IVF monitoring follow-up appointment. I must say that everyone's comments regarding the Rockville office staff are spot-on. Each of the staff with whom I interacted was very nice. The office was very busy, but considering it is the only office that is open after 9:00 am on the weekends, that is to be expected.

I was surprised to find that the damn cyst was still there. I really thought that it would have dissipated by now. However, I was pleased to see that I had three small follies on my right ovary! My RE's goal is to get between three to six eggs, so we're on our way. I'm hoping that a follie or two is hiding behind the cyst on my left ovary and that maybe another two or three follies will pop up on my right side. However, even if I only have those three follies, I will try to stay optimistic that they are good ones and contain good eggs. My E2 level was 211, which seemed to be on the high side considering I only have those three tiny follies, but maybe the cyst is producing some of that still. I'm hopeful that maybe it's on the higher side because I have some other follies that we weren't able to see. High hopes, right?!

The RE who reviewed my results (not my RE) wanted me to continue taking the same dosages of my stims and not change a thing. I also view this as a positive sign that my body is responding appropriately. Next check-up - tomorrow morning back at my Annapolis office!