Showing posts with label fibroids. Show all posts
Showing posts with label fibroids. Show all posts

Oct 28, 2012

well, hello there :)

After a lengthy break, I am going to try to get back into the writing groove again. I know I have been pretty silent over the last few months, but I have been following along in my reader most days and thinking of all the courageous, strong, smart, and funny women out there. My grief does tend to turn me inwards for long periods of time and it is hard for me to write, but now that we are getting back into the concrete stuff, there should be more to write about than my sadness.

Where are we? Well probably pretty close to getting right back in the thick of things. After our long Canadian-style wait, we have 2 consults coming up the week after next. I am due to get AF in a few days and then I go to get my AMH drawn and the usual CD3 bloodwork. Y did a new S/A last week and he also did the DNA fragmentation test for the first time.

I have a SHG scheduled for the week after this coming one, right before we dive into the consults. The SHG will be important because we need to reach a final consensus on those damn fibroids before proceeding (the current leaning is no surgery, but we need to reach a confident decision) and because it will hopefully rule out scar tissue/adhesions.

My cycles have been a good deal shorter and lighter since I gave birth and the complications that came after, so the hope is that the shorter and lighter cycles are a good thing and not indicative of Asherman's Syndrome, which I am unfortunately at pretty high risk for due to my history of multiple D&Cs and retained placenta.

I am sure I will have lots to talk about when we look into both clinics we are considering. Both clinics have different options which could be interesting or useful to us -- Clinic A has a very well-regarded RPL specialist who conducts clinical trials in that area. They also do a lot of blastocyst transfer and offer PGS (need to clarify which type of PGS). Clinic B offers endometrial co-culture and routinely prescribes intralipids.

We might end up not going for any extra bells and whistles at all, but it will definitely be interesting to learn about the different possibilities and also to have a fresh set of eyes review our case. All that being said, I am still feeling ambivalent about getting back into cycling from an emotional perspective, not to mention the immense cost.

In short, these upcoming consults will hopefully be worthwhile and interesting but we are not yet 100% committed to cycling again in the near future. Also, the SHG results could be a big game changer -- potentially surgery vs. beginning the path of working towards surrogacy if Asherman's is an issue.

This past cycle has been somewhat of a hail-Mary-type (I don't think we have an equivalent expression in Judaism) long-shot attempt...since I am still unexplained and we thought it was uncanny that the 2/5 IVF transfers that yielded a positive pregnancy test were the only transfers I took Prednisone, we did a cheapy Clomid/Prednisone cycle this month just for the hell of it before we prepare to shell-out big time to re-enter the IVF circuit. I will of course let you guys know if anything comes of it, but it is a real long-shot.


Apr 3, 2012

surgery tomorrow

Wish me luck - this thing is supposed to come out tomorrow. We did a doppler ultrasound yesterday that showed this thing is taking up most of my uterus and has a fantastic blood supply. I think it is the blood supply that suggests my uterus is a ticking hemorrhage time bomb and is encouraging them to move before Passover. They actually won't be 100% sure it is placenta until they biopsy it - it could also be degenerating fibroid or something else. I learned something interesting and freaky today - you can have a molar pregnancy that coexists with normal fetus(es). One doctor proposed the possibility that this could be my case, but thankfully we've ruled that out. I hope I will have a good report tomorrow. It is very disappointing that tomorrow is when we were supposed to fly to the states.

Mar 25, 2012

what next?

First, thank you for all the love & support. I know I have been totally flaky about responding to comments, but know that I read and re-read your comments and they help me through the day.

Today we went back to the RE for a 2 week follow-up appointment. The big decision we need to make over the next week is whether we want to do a myomectomy to remove my jerk fibroids or not. I was a bit shocked - when we asked how soon I might start a fresh IVF cycle if we do not do the surgery, Dr. T. said we could start right after Passover. (Passover begins April 6.) We will actually be away for most of the month of April, so we wouldn't be able to start until the last week of April, but that is still much sooner than I was anticipating.

On Thursday I will have another diagnostic hysteroscopy to get a better handle on the current fibroid situation. There definitely seems to be a consensus that one of my fibroids likely played some role (how much of a role is very debatable) in my problems with Aminadav's sac and placenta. While all of my fibroids grew with the pregnancy, none of them are objectively huge.

The two bad guys are the ones that bulge into the uterus. If we elect to remove them, they will need to be removed from the inside of the uterus. The problem when operating inside of the uterus of course is the potential to create scar tissue, adhesions, and other various types of damage which could cover more surface area than the original fibroids themselves.

Dr. T seems to think that I just had exceptionally bad luck with where Aminadav implanted in relation to one of the two problem fibroids and that it's better not to mess with my uterus any more then strictly necessary, though the doctors during my hospitalization seemed to be more in favor of getting the fibroids out before we attempt another pregnancy. We'll see what the surgeon says on Thursday and then we'll have to make some sort of decision.

I am unsure of what I want to do re: the fibroids and also quite unsure of on what type of time scale I want to pursue IVF moving forward, but before really delving into that I think we need to reach some sort of consensus on the surgery. Any folks out there that have done a myomectomy via surgical hysteroscopy or considered doing it? Any wisdom or thoughts?

Feb 19, 2012

update & more on our situation

Thank goodness - I am home from the hospital and now on bedrest at home. Nothing like our sweet mattress and being able to sleep uninterrupted. Our cat is really happy to see me:)

The problem with the placenta seems to have been caused by those jerk fibroids I have. I started off with one stubborn fibroid in late summer 2010 when we began fertility treatments. After a lot of IUIs failed and IVF was put on the table in winter 2011, I had a hysteroscopy to check out the fibroid and assess whether it might be hindering my fertility.

At the time, it was just that one lone fibroid. We did see that it was not subserosal (the most innocuous kind that grows on the outside wall of the uterus), but it was termed "minimally invasive" and it was still quite small. We were advised that it probably wasn't quite worth the risks of surgery to remove it, but that we should keep an eye on it.

So on we went with a couple more cycles of FSH injections with IUI and then ultimately with several rounds of IVF. By virtue of the protocol, of course every time I cycled, my estrogen was brought to unnaturally high levels, and the fibroids love estrogen. So a few more fibroid friends popped up, and the original fibroid continued to grow. With the IVFs, I was taking oral estrogen pills as well, which I think was basically like fish food for my fibroids.

Anyhow, when I finally did get pregnant (hooray!!!) this past November, I had 3 fibroids, all of whom were enjoying growing along with the growing babes and my increasing estrogen levels. To make things a little worse, my E2 levels plummeted after this past IVF transfer and were dangerously low (~39 pg/ml), so low it was pretty shocking these little ones implanted (same thing happened to my friend T with the low estrogen that cycle). As a result, I was popping the oral estrogen pills like candy for a few weeks, hoping to make up for lost ground.

In short, what started off as a little fibroid problem, gradually became a bigger fibroid problem, Still, most fibroids aren't usually that dangerous during pregnancy. Even though they typically grow, you generally have to be pretty unlucky for a pesky fibroid to threaten a pregnancy.

My problem is it seems that one of these now quite large buggers is behind our son's placenta and as its been growing, its been jutting out putting stress on a weak spot in the placenta, which is what caused the partial detachment (ha, I prefer 'detachment' to 'abruption', it scares me less…if you want to google partial placental abruption be my guest…it's scary stuff).

Thankfully, fibroids generally grow the most during first tri and then stay relatively stable. We have a chronic problem in that this fibroid will be constantly putting pressure on the area of the placenta that separated from the uterus. At this point in the pregnancy, the hope is that the placenta will be able to mostly heal itself at the point of detachment, though my understanding is that on ultrasound, all we can really see is the area of bleeding around the detachment and from that estimate the size of the tear itself - the actual tear doesn't show up on ultrasound.

I actually had an earlier and less severe bleed at 9 weeks that landed me on bedrest at home for a week. In retrospect, we can see from the ultrasound that the bleed looks to have been in the same area the first time around, but at the time, that bleed was seen as an isolated event and hadn't yet been connected to one of the fibroids causing trouble.

Of course the problem is that each successive bleed has the potential to be larger and more threatening as the babies continue to grow, and at this point of pregnancy, unlike during the very beginning, if something catastrophic happens to the placenta of one of the babies, the whole pregnancy is threatened. If I have a major bleed post-viability (24 weeks), there are big decisions to be made and more options for intervention, since the babies could be delivered, but before then it is mostly just sit tight, rest, and pray.

Even though this whole thing is hanging over me like a dark cloud, I am eternally grateful to be home from the hospital still pregnant with my babies - and since we know the genders, I can now say, our son and daughter. When I went to the ER during my first bleed the notes from the doctor read "threatened abortion" and when I was being admitted this time around, the admittance note read "imminent abortion." How about "imminent live birth in 3.5+ months"? That is what I am going for here.

On Wednesday, we have an appointment with the OB where we will come up with a long-term plan. I am not sure if there is any chance we will get to Toronto before the birth of these babies. On one hand, I am thinking if it still might be a possibility assuming I can fly non-stop and lying flat, it might be worth it to still try to make it happen if the NICU at the hospital we would deliver at has better stats than here in Israel. There is a MFM in Toronto (Y's cousin's doctor), who is willing to take us on, and it sounds like she is really amazing, so I think I would be comfortable with that aspect.

We have been told it is very unlikely this pregnancy will go to term, so I feel like I should already start researching NICUs and reading up on preemies, since I am doing my best to adopt the positive attitude that I will have these babies post-viability and they will grow and thrive - trying hard to think positive and not dwell on the the dark thoughts.

Oh and on the hospital - so thrilled to be out of there! Almost a week and I was so ready to leave. We were 4-5 women to a room in an old ward from the 70s. They would often use the 5th (temporary) position in the room for a woman in the early stages of labor, among us high-risk pregnancies and miscarriages, too.

I realize they are so limited in space, they couldn't help it, but it's pretty horrible to hear a full or nearly full-term woman moaning with her contractions when you are a high-risk pregnancy before viability and likewise, it is pretty cruel for women miscarrying to be among us preggos, even if most of us are very high-risk. There was one woman in my room who was in her 12th week and had been there for a month for heavy bleeding - I really feel for her.

It was also so hard to sleep with the constant monitoring AND the occasional super loud snorer husband who would stay over. Luckily, I had many wonderful visits from friends and nightly visits from Y, which helped keep me sane (but that first night, I was so, so terrified). The hospital was the right place for me to be at the time, just really not so pleasant!

Feb 16, 2012

in the hospital

I guess I will start at the beginning. Monday morning I woke up in a spectacularly horrible mood. I was insufferably cranky towards Y. By mid-morning I was having fairly intense cramping. Unfortunately, I have had quite a bit of cramping throughout this pregnancy and as a result, I have spent a lot of time wondering whether my pain means something bad or whether it's in the realm of normal. The pain was pretty persistent and honestly I was very uncomfortable, so I decided to leave work in the early afternoon to rest.

That afternoon I was gripped by panic - not because of the cramping, but because I was feeling terrified by the pregnancy in general. It was like a red panic light was going off in my head and I had no idea why. I just was very scared that something terrible was going to happen. I told Y that I thought maybe I should see a therapist - that perhaps after all we had been through infertility-wise, my anxiety was out of control and I wasn't coping well.

In the morning I was still a little uncomfortable but excited to head to our first detailed (aka level 2) scan. The scan went really well - both babies look great and we found out we're expecting a little boy and a little girl. The only thing that was totally bizarre was that I broke out in a cold sweat during the middle of the scan and suddenly felt extremely nauseated.

I went to work in the lab and when I went to pee there was a little blood. I thought it was probably a little irritation from the cervical length check, but then blood started gushing out. Not what I was expecting to see at all. Thankfully, the emergency room is within a 5 minute walk of my research lab. I was very confused given that I just had a good ultrasound, but the ultrasound in the hospital showed a 5cm placental detachment of baby alef's (our son's) placenta. I have been hospital since then. There is really nothing to do at this point but bedrest and to pray that the separation heals. This morning's ultrasound was good, but needless to say, we're pretty scared and we've got a long way to go.

Jan 23, 2012

a long overdue update

Oh my, I am so far behind! Time to get this thing updated and then try to update at least weekly. I have wanted to write for a while now, but it seems so daunting because I am so far behind. I guess I will back-track to more or less where I left off.

Between weeks 10-12 my morning sickness really spiraled out of control. I suppose during those 2 weeks I really had an alibi not to update the blog because most days I was so sick and miserable. I was on Zofran for a little over a month, and at first it seemed like a really good drug for me, but eventually, I started to get terrible headaches from it and I was still vomiting and dry heaving all day long.

I spent a lot of time at home, lying around in bed and feeling miserable for those 2 weeks. Y gave me IV fluids 3-4 times a week (basically on the days I couldn't keep anything down) and that did help a lot. I felt very fortunate that I could receive fluids from the comfort of our bed and that Y could more or less manage my dehydration. I think I probably would have ended up hospitalized if I didn't have my own live-in doctor, so I feel really grateful for that:)

Now I am taking Benadryl instead of the Zofran and I am doing a lot better, probably by virtue of just being out of the first trimester - still often vomiting a few times in the morning but functioning beyond that. Of course after reading Dr. Luke's book (which is often considered the bible of pregnancy with multiples), Y and I are both worried about my lack of weight gain, especially since I am starting off on the smaller side.

I really hope the eating will get easier over the next month and I will begin to pack on the pounds. Y bought 2 cases of Ensure and I am trying to have 2 cans of that a day since it is very nutritionally dense, though I am generally falling short of that goal. I really hope I can step it up.

Aside from the morning sickness, my pregnancy has been thankfully pretty uneventful over the past month (no more bleeding, knock on wood). I did have a few days of pretty intense cramping during my 11th week that made anxious. It felt way too much like menstrual cramps for my comfort. I went in for an ultrasound and also saw the OB who was on duty for urgent issues. He said that based on the location of my fibroids and the location of my pain, he thought that perhaps the cramping was from my fibroids growing and/or degenerating.

The cramping has returned a few times and it always makes me nervous, though it is unclear to me whether it is actually the fibroids, growing pains, or something else entirely. It was still a huge relief to see that the babes were doing well and thriving at the ultrasound.

Last Monday we went in for our NT scan. It was great in that the nuchal fold measurement for both babies was 1.3 mm, which gives us a very low risk of Down's. That was really the most important part.

It was a little disappointing because they used a dinosaur ultrasound machine with very poor resolution and the scan was done transvaginally (thought those days were over!) by a crochety old guy who was really rough. He gave us a few images, though it's unclear exactly what the point was since the images were just a nonspecific blur, literally.

As I already wrote, the most important thing was that the nuchal fold measurements were great and both babies are looking good and measuring appropriately. Speaking of which, while I am finding many things to worry about, I am finally no longer obsessed with vanishing twin syndrome, so that feels like a pretty big milestone to me! I am now finally accepting that this is a *real* twin pregnancy...pretty wild.

Earlier this week, we had our last appointment with our RE. I know most people have long since graduated from a RE by 13w2d, but the way they do it here is that you can continue to see your RE (instead of an OB) until the end of 1st tri. It was definitely bittersweet - it definitely feels like a big milestone to be moving on from the RE and becoming a "regular" pregnant woman, though I felt like Dr. T. really went above and beyond and I give him a lot of credit for our ability to reach this point.

On Wednesday, I have my first MFM appointment. I am feeling pretty nervous about that and I am hoping that I like the doctor and that we click. I really hope that Y will be able to come along, though it seems like his schedule might not allow him to join me. I also have a hematology appointment next week and I hope that goes well, too.

Today, the home doppler that I ordered arrived. Y was able to locate both babies' heartbeats within 5 minutes, which was really cool (though initially he just found mine). I remember how a month ago both babies were right at my pubic bone - now they have migrated up to under my belly button! I am also really showing now, which definitely makes the pregnancy feel more real. I am really excited to feel them kick, though.

Our RE told us yesterday about the early detailed scan that we can do during weeks 15 or 16. Here in Israel, it is apparently common to do 2 anatomy scans - one early one between weeks 15-16 and a later one between weeks 20-22. The first one is done at private ultrasound clinics and partially covered by insurance. It is not deemed medically essential but it is obviously a nice opportunity to see the babies and begin to identify any potential anatomical problems. Also, as an added bonus, gender can usually be determined. The later scan, which is the traditional anatomy scan, is totally covered by insurance and the one that is deemed medically necessary.

Anyhow, like most anxious parents, we thought the early scan sounded pretty good. Unfortunately, it seems we don't know the system well enough and today was already too late to book the scan. We are now on a waiting list, but it's a bummer we might not get to do the scan at all.

My last big piece of news is that Y got a fellowship in Canada in his desired surgical sub-specialty. In short, it means we will be crazy enough to attempt to move from Israel to Canada in early April when I am 24 weeks. That is the tentative plan, anyway, obviously everything could change dramatically if I end up on bed rest and/or have significant complications before then. I am hoping to discuss the logistics of the move with the MFM at my appointment on Wednesday to make sure our expectations are realistic.

I really can't imagine moving beyond 24 weeks, and even then, it is pretty clear to both of us that my only physical participation in the move will be getting on the plane! I am really proud of Y he got the fellowship, and if everything works out well, it will be great to be close to our families during the babies' first year. Well, I think that is more or less all the news that is fit for print. I will close with a few pictures from our ultrasound 2 weeks ago (11w4d):

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