Trying for another baby

First of all, I have been amazed by all the comments I receive on this blog, almost daily it seems.   It makes me so sad in some ways to know how many other women are experiencing what I experienced, and yet knowing that putting my story out there is helping or giving hope to so many of you….it feels rewarding in a way.  I appreciate you sharing your stories with me.  I’m always happy to offer a listening ear, advice or answer questions.  I remember how much I wanted to talk to someone about this and yet it seemed like no one else really understood.  Well I do….so please keep sharing your stories with me.

There has been an interesting development in our lives.  When we had our older son, there was no question that we wanted a second.  And we went through a lot to get my little Elliott, and he was worth every bit of it.  But then we had to decide if we wanted a third child.  Honestly, there has been a lot of discussion about it.  My husband has had many good reasons why we should stop at 2….and yet, I just don’t feel done.  I don’t feel like we are complete.  The other evening, my husband surprised me by saying that if we were going to have a third child, he’d rather that we did it sooner rather than later.  While I had some reservations about having our kids so close together (I really like the 3 yr age difference between our boys), I wanted to respect his opinions (plus, he was finally saying YES!)

So, just 3 months after it was put in, the doctor removed my IUD this week.  We will be waiting 3-6 months before we start trying.  I truly feel like my IUD was at least a contributing factor to all my chemical pregnancies.  Primarily because it thins out your lining and after all the testing I went through, the only thing they could find was that I had really thin uterine lining, pre-ovulation.  I was very hesitant to put the IUD back in, but since I was (and am still) breastfeeding, my only birth control option was the mini-pill and I was TERRIBLE about taking it at the same time every day.  I knew I would end up with an accidental pregnancy and personally I prefer to have more control over when I get pregnant than risk that, so I got an IUD in February, thinking it would be in for a year or so before we started trying.  Well, 4 months later it is out again.

I must say I am electrified and excited about the thought of being pregnant and having another baby.  But I am also TERRIFIED about having to go through all of THAT again.  Hopeful that maybe I won’t have to, but how do you know??

I did contact Dr. Bruce Lessey in Greenville, SC again.  He was the RE that put me on the medicinal protocol that resulted in my successful pregnancy with Elliott and he is going to prescribe those meds to me again when we are ready.  So that makes me feel better.  But I’m scared.  I don’t want to go through that again.  I don’t want to go to that place again.  I was so devastated, so obsessed, so consumed.  I think those feelings were normal, but it was just such an insanely difficult time.  But, my Elliott was worth it.  If I have to go through it again to get another I will.  So far my odds of a successful pregnancy are 1 in 3.  I’ve had 6 pregnancies and I have 2 kids to show for it.  But I DO have 2 amazing little boys…and they are my hope and inspiration.  I feel, I HOPE that if I have more losses that somehow it won’t be quite as devastating because I know it will work out for me.

And I know it will work out for you too…..you HAVE to keep hoping and trying.  After my first loss, I wondered if I would ever hold MY baby, if something was wrong with me.  Then I had my Ethan and those fears were temporarily put to rest.  But they we went for #2 and after my fourth loss I began to despair, but then I got my Elliott.

You will get your baby too…..I have known many women, online and in person, who have been through this madness and with time, each of them has eventually had a baby.  Even after 10+ losses.  You will too.  And so will I.  Never give up.  I didn’t and my boys are amazing and I can’t wait to meet my third baby who is just a figment of my imagination now, but I WILL hold that baby.

If you are reading this, it will be ok….

August Update

Its been awhile since I have updated, life has been crazy.  I started on Dr. Lessey’s plan of taking 5mg Letrozole (Femara) for days 5-9 of my cycle.  On day 9 I had an ultrasound to check my lining thickness and it was 1.5mm, which is EXTREMELY thin.  I also had a freakishly large 30mm follicle on the right side (I suspect leftover from my annovulatory cycle last cycle) and some other follicles, 7-16mm.  I started taking 4mg Estradiol, vaginally, immediately and the next day my lining was up to 5.5mm and the 30mm follicle had collapsed, leaving a 18mm dominant follicle.   The following day my lining was up to a much healthier 7.5mm, which is still thinner then they like to see but I had another day of Estradiol to take.  So with my lining looking healthier, my husband and I decided to try this cycle and see if I could get pregnant and stay that way.

I took a trigger shot of 5000mu Pregnyl, and 7 days after the trigger I will do a booster shot of an additional 5000mu of Pregnyl.  Pregnyl is the pregnancy hormone, HCG.  Dr. Lessey wants me to do the booster to extend the window of implantation and give an early pregnancy some additional hormonal support.  Due to this shot, I cannot take a pregnancy test until the day my period is due, since I could get a false positive result (since pregnancy tests measure the level of HCG in my system.)

So that is where we are, waiting to take the booster shot.  Hopefully I will have some good news in the next couple of weeks!

Blog article: Missing proteins in the uterus tied to infertility in women with endometriosis

Missing proteins in the uterus tied to infertility in women with endometriosis

CHAPEL HILL, Friday, June 30, 2000 — Proteins missing from cells lining the wombs of women with endometriosis may help explain their infertility, according to findings from a study headed by a University of North Carolina at Chapel Hillscientist.

The findings published in the July 1 issue of the medicaljournal Fertility and Sterility could add important clues to the link between infertility and endometriosis — a link that has been controversial. The research suggests that the cellular proteins alphav-beta3 and leukemia inhibitory factor (LIF) may serve as biomarkers for identifying women whose infertility is linked to their endometriosis and is most likely reversible with treatment.

In endometriosis, fragments of the uterine lining — the endometrium — implant elsewhere in the pelvis, such as on the vagina, ovaries, cervix, bladder and rectum. The condition exists in up to 40 percent of women with infertility, but the link between minimal or mild endometriosis and infertility remains unclear. As many as half of women with endometriosis will become pregnant without any treatment for the condition. Moreover, studies on the adverse effects of endometriosis on pregnancy rates have yielded conflicting results.

The new study headed by Dr. Bruce A. Lessey, associate professor of obstetrics and gynecology at the UNC-CH School of Medicine, suggests that a reduction of the proteins in question may interfere with embryo implantation in the uterine lining. Alphav-beta3 and LIF are present in uterine cells around day 20 of the typical 28-day menstrual cycle, suggesting they play an important role in the embryo’s subsequent attachment to the uterine lining.

Lessey, a member of the department’s reproductive endocrinology and infertility division, had previously identified alphav-beta 3 as one of a family of “cell adhesion” glycoproteins called integrins that may be vital to pregnancy. LIF recently was shown by study co-author Dr. Colin L. Stewart to be critical for implantation.

“We believe beta3 and LIF are markers of uterine receptivity, a sign that the uterus is ready for embryo attachment, and their absence might be used to identify infertile women with endometriosis who might benefit from medical or surgical treatment,” Lessey said.

Earlier findings by Lessey based on 113 infertile women diagnosed with minimal or mild endometriosis provided support for this belief. He compared fertility rates of 30 beta3 positives and 38 beta3 negatives. Neither group received subsequent therapy for their endometriosis. Of these women, 73 percent of the positives became pregnant within four years, compared to only 10 percent in the beta3-negative group.

In the new study, Lessey and his colleagues collected peritoneal (abdominal) fluid from women with minimal or mild endometriosis and from women without the uterine condition. Some women were fertile, others infertile. The fluid was injected into the abdomens of recently mated female mice around the time of embryo implantation.

“We saw a marked reduction of implantations in the mice that received the fluid from the infertile women with endometriosis.” Lessey said. “And when we looked at the level of utetrine beta3 integrin in the mice that got this peritoneal fluid, we noticed it was absent along with decreased levels of LIF.”

The impact on implantation and protein levels was least among mice who received abdominal fluid from fertile women without endometriosis.

Moreover, peritoneal fluid from a woman successfully treated for endometriosis and who eventually became pregnant had no effect on the mice.

“She had previously been missing beta3 but was successfully treated and had gotten it back before she conceived,” Lessey added. “Many doctors don’t believe that minimal amounts of endometriosis can cause infertility. This study would argue that even women with minimal disease appear to have peritoneal fluid that can affect implantation. I think this study offers a mechanism by which this may be happening.”

The research was funded in part by grants from the National Institute of Child Health and Human Development at the National Institutes of Health.

Others involved in the study are Drs. Maria J. Illera of the Universidad Complutense in Madrid, Spain; Lingwen Juan and Jane Ruman of the UNC-CH department of obstetrics and gynecology; Colin Stewart of the Laboratory of Cancer and Developmental Biology at the National Cancer Institute; and Emily Cullinan of Lexicon Genetics in The Woodlands, Texas.

http://scienceblog.com/community/older/2000/E/200004760.html

I’ve been accepted into the “Moses study”

Today I was contacted by Dr. Bruce Lessey, a doctor in South Carolina who I contacted after talking with another of his patients with a similar history to mine.  Dr. Lessey is one of few doctors who is researching how endometriosis and missing proteins such as alpha v-beta3 and leukemia inhibitory factor cause recurrent early miscarriages.  Enrolling in this study will enable me to get the biopsy, pathology and interpretation free of charge.  I am very curious to see if this might be the cause of the miscarriages.  I spoke with him this afternoon and he said that spotting before my period (I have 3 days of it usually) and painful ovulation can both be signs of endo.  He thinks I am a good candidate for the study and wants me to come in at the end of this cycle!  They typically do this biopsy 8-10 days past ovulation, which is right after 4th of July and I’ll already be in South Carolina.  So I am going to do this.  He also recommended another course of treatment to strengthen the endometrium which we will consider for next cycle.

Here are some more resources I found about endo and early miscarriage:

http://www.hcgresources.com/infert.htm

http://www.ivf.com/ch17mb.html

http://www3.interscience.wiley.com/journal/120777710/abstract?CRETRY=1&SRETRY=0

So so happy with Dr. Corley….

I am just sitting here, floored. In shock. When I went to meet with the new RE, after our consultation he said he would email me and I could email him whatever questions I had.

I tried not to email him too much, and to combine several questions into one email, but I was a little worried I was bugging him. I think I’ve emailed him 3 times, the most recent one giving him the results I received today.

Well tonight he called and said, “Amy, you have some questions. Let’s talk.” And then we went through EVERYTHING. What the results meant. What was coming next. Different options for treatment. He told me his recommendations….and then he asked what *I* wanted to do – and said we could do that too. He listened to me. He explained everything to me. He spent 45 minutes on the phone with me, listening to every single thing I had to say, not dismissing any of it, and telling me how he could help me.

I feel like I won the RE lottery. I found a doctor who actually listens, who actually seems to care, who actually wants to help me. It makes me feel so much better. SO much better.

As for the results – he basically said that the borderline APAs, given that they were IgG antibodies and not IgM antibodies didn’t mean much. He didn’t think that was causing my m/c. If it was IgM antibodies it would be a different story. I know I won’t explain it well, but IgG antibodies don’t cross the placenta, IgM antibodies do, so IgG antibodies could not attack the embryo. Or something like that. Basically he said he wouldn’t recommend more than a baby aspirin and he’s not even sure that will do anything, but it won’t hurt. He doesn’t think I need Lovenox/Heparin, but if I really wanted to do it he would prescribe it for me. I’m not sure what to do on that one, I’m going to think about it for a bit.

He reiterated several times that given my history he would be very surprised if I didn’t have elevated NK cells and mostly wanted those results back. It will be 1.5-2 weeks most likely before we get them.

Basically he said that if we were ready we could try next cycle. If I do have the elevated NK cells, we would do the Intralipid therapy. He prefers to do that with a full IVF cycle, to ensure that the embryos are genetically sound, that the conditions in my uterus, my hormones, etc are good, and so they can know that there is an embryo in there, not leaving it up to chance with sperm meet egg, since often people have to try for awhile to successfully fertilize. I mentioned that (so far) I have gotten pregnant every time we have tried since my 1st pg and while I know that isn’t a guarantee, that is my history, and I would prefer to try naturally for a couple of cycles before thinking about IVF. He said we could do that too. We will do the lowest dose of injectible gonadotropins with an HCG trigger.

And if the NK cells don’t come back elevated we will do the same thing. So basically, its on next cycle. I need to get a list of the meds and find out what is covered by insurance. I need to decide if I want to insist on Lovenox/Heparin or let it be. I need to get my head around all of this.

I have to say, I am feeling SO MUCH BETTER about all of this. This doctor is what I had hoped for when I first consulted an RE. The first one I saw was nice and knowledgeable, but the way they handled the pregnancy I had with them did not sit well with me. (When my betas didn’t quite double after the 2nd draw on Thursday, telling me to wait until TUESDAY before I could come in again, when they had a SAturday clinic and I was basically losing my mind), and my RE NEVER called me or asked her nurse to call me to set up a follow up appointment after that loss. I don’t think they really looked at MY situation and history at all. I was just put through the machine, so to speak.

Anyway, we are still waiting for the results back, but it looks like we are on next cycle if we want to…which is exciting and completely terrifying at the same time.

Immunology panel results

Results are still coming back, but this is what I have so far.

1) Immunoglobulins panel (http://www.millenova.com/tests/igs.cfm) and my results for that panel are normal.
2) Antinuclear antibodies (http://www.millenova.com/tests/ana.cfm) – normal
3) Thyroid antibody panel (http://www.millenova.com/tests/ata.cfm) – normal
4) Embrotoxicity assay (http://www.millenova.com/tests/eta.cfm) – normal
5) Antiphospholipid antibodies (http://www.millenova.com/tests/apa.cfm) – some normal and some BORDERLINE
Borderline ones are:
-IgG-  phadtidylinosositol
-IgG – Glycerol
-IgG – choline

I’m not exactly sure what this means, but in one of my books it says that these antibodies can be responsible for detaching an embryo right after it implants, which would explain my chemical pregnancies. Treatment is heparin. It is a borderline result so they are not drastically off the charts, but it is interesting that 3 of them are just out of normal range. My dad is faxing these results to my new RE, so we’ll see what he has to say about them.

I am still waiting on the Reproductive Immunophenotype test and the Natural Killer cell assay. The NKa is the most important one.

Turns out the HSG wasn’t a total waste of time

I had my HSG on Friday.  An HSG is when they inject dye into your uterus and take X-rays and the dye shows the shape of the uterus and whether or not there are any blockages in the fallopian tubes.  I admit that I was irritated about having to get one at all.  I had had a healthy pregnancy and delivery via C-section.  I got pregnant every time I tried, so clearly my tubes weren’t blocked.  But the RE wanted me to do it, so I did.  And it turns out that I have a slightly bicorunate uterus (sometimes called arcuate.)  I’m not exactly sure the degree (I will found out on Thursday at my RE appointment), from the pics I have found online it could be MUCH worse, but it is definitely not normal.

My HSG of my arcuate uterus

When discussing this with my dad (the OB) he said that most likely this was not contributing to my chemical pregnancies, but….if the embryo was implanting in the area where the uterus didn’t form properly, then its possible there is reduced bloodflow in that area, which could cause an early miscarriage.  But, only if it implanted in that particular spot.  So, its a weak possible explanation.   However, it does explain why I went into labor a little early with my son.  My water broke at 36.5 weeks and I never progressed past 1cm dilation in 24 hours of labor.  Looks like he just ran out of room in there.  So, this isn’t a strong explanation for what has been happening, but it could be a piece of the puzzle.