Monday, April 5, 2010

Our story

My husband and I got married in March 2007, and I went off the pill in July 2007, after long conversations about whether I was ready to interrupt my career if we got pregnant immediately. Hah!

I'd been on the pill for 16 years (age 16 to age 32), and it took about 6 months for my body to figure out what a 'normal' cycle should be. Turned out that my new cycles were 32-33 days long. When I did research and started doing ovulation predictor kits, it also turned out that my luteal phase was usually about 12 days, which is short.

In August of 2008, we figured it was time to get some medical investigation started, so we went to a RE associated with the medical clinic where my primary care doctor is located. She ran some of the basic tests, and they came back normal. I had a HSG done, which was unpleasant (actually, the HSG was fine, the cramping afterwards sucked), also showed normal. My husband's sperm count, A+. My hormone levels, all in normal levels.

I started going to an acupuncturist who specializes in infertility around November of 2008. She suggests I try three weeks of no wheat, no dairy, no sugar, and the three weeks fall in between Thanksgiving and Christmas. I survive nonetheless, and while I didn't notice a change during those three weeks, as soon as I have wheat I feel like crap. I go completely gluten free starting at the end of December 2008.

We started Clomid + IUI cycles in January of 2009. Clomid sucks -- I get horrible hot flashes in the middle of the night -- but I did respond to it. No luck. After 2 cycles, the RE re-runs the hormone levels, and my FSH level is high (around 30). She tells us we should go straight to IVF because the high FSH level indicates poor ovarian reserve and it's our only chance to get pregnant. We fire her.

Well, we do. We think it's stupid to go straight to IVF without understanding why we're not getting pregnant. After all, $10-15k/month is a lot of money to throw away if you're not addressing the fundamental issues. We also re-run the hormone levels, and my FSH is still slightly elevated, but more like 9, and we suspect the 30 may have been due to Chinese herbs.

I get a referral from a friend at work for a doctor that he raves about (and who helped him and his wife get pregnant after infertility). We go see the doctor for an initial consultation in April 2009. The appointment is at 2:30 and we don't get in to see the doctor until after 4. This is the sort of thing that infuriates my husband, but we like the doctor so much that we decide we want to work with him. On the plus side, when you're in with this doctor you get his full attention, so there are pros and cons to the lack of punctuality.

He diagnoses mild PCOS and puts me on Metformin. I start on one pill, work up to two, until I realize that two pills make me horribly anxious and I go back to one. (That actually takes about 6 months to diagnose since it's not a listed side effect.)

We start Femara + IUI cycles with this doctor in May 2009. I respond well to the Femara (and it's sooooo much better than Clomid -- no side effects, and better, more controlled, response). My uterine lining tends to be light, so we add an estradiol spray, which does help my lining. Because of my short luteal phase, I do progesterone suppositories after the IUI during the 2 week wait. Still no luck.

My doctor runs an immunological work up in July 2009. My natural kill cell levels are high, and we schedule a laparoscopy so he can look for endometriosis (I don't have any of the obvious symptoms, but it's often linked to infertility and immune issues). He finds more than expected and gets rid of it. I have a horrible time before and after the laparoscopy as I pass out when they put the IV in, pass out when they take it out, and then again in the bathroom afterwards. Turns out nurses really freak out when you pass out *before* the procedure. They were suggesting we should do it another day, and I was emphatic that it was not going to help. Recovery from the surgery isn't bad -- I take 2 days off work, and then have a weekend to get more mobile. (The bubble-wrap effect on your skin from the air they use to inflate your abdomen is really trippy, though!)

We do another Femara + Lupron + Menopur+IUI injectible cycle in October 2009. I respond ok to the meds, but no luck.

I quit my job at the end of November 2009. It's a high profile, stressful job that isn't what I want to be doing, and we were very lucky to be able to choose to have me focus on getting pregnant. I continue to be incredibly grateful for this.

We're geared up to do another injectible cycle in December, but when I go in for my Day 2 ultrasound at the end of November, I have a leftover follicle, so we cancel the cycle and I get December off. It's a weird 'natural' cycle, and I end up having what I think is a super short cycle (~9 days) and then a long cycle (35+ days) that we end by putting me on progesterone in late January.

We decide it's time to start IVF (the cancelled injectibles cycle was going to be our last one pre-IVF) so we get recommendations from our doctor. He suggests two nearby doctors, one of whom really gets the reproductive immunology stuff (which many doctors, including our first RE, consider bleeding edge research that may or may not have scientific merit). We go with that guy. :)

In mid-January we start the initial consultations with the IVF clinic. Tons of pre-cycle testing, genetic consult, etc. We re-run the immunology workup and while my natural killer cell levels are much lower, they're still slightly elevated, and my TH1/TH2 levels are high.

At the end of January I start the progesterone to get my cycle to finally start, and it does in early February. A Day 2 ultrasound shows inconsistent antral follicles, so I go on the birth control pill for about 4 weeks to get my follicles lined up (and to coordinate with the clinic's schedule for egg retrieval/embryo transfer). Because of the immune issues, I do a shot of Humira in mid-February. Humira is an immune suppressant usually used for rheumatoid arthritis. It makes me feel like I have the flu for about 24 hours, and I start using hand sanitizer obsessively. Oh, and because of the desire to use Humira, I have to get a tuberculosis test done. Turns up positive. (1/3 of the world's population carries latent tuberculosis -- nearly all as a latent infection that isn't contagious.) Because I'll be on an immune suppressant, I have to start treatment for the TB infection before I take Humira. So I start 9 months of a specialized antibiotic that only fights TB.

Finally on March 3, I start the actual IVF cycle. I also do my second shot of Humira. I start micro doses of Lupron, then add 225 IU of Gonal F. I'm on ciprofloxacin for 5 days early in the cycle, and then 5 days post retrieval. Also start dexamethasone mid cycle. I start progesterone shots the day before the transfer, and progesterone/estradiol suppositories the day after transfer. I also started Heparin, twice a day, before the egg retrieval.

I start the cycle with 9 antral follicles. I have two ultrasounds before the egg retrieval, and in both of them the doctor can't see my right ovary. We figure it's hiding and he'll find it when he's doing the egg retrieval and I'm under anaesthesia. There are 4 follicles on the left ovary, of varying sizes.

The egg retrieval went fine, except that I'm really bad with IVs, and passed out after they took out the IV. That plus nausea from the anaesthesia kept me for a few extra hours in recovery. He got 3 eggs out of the 4 follicles on the left side, and found out that my right ovary was completely dormant. 2 of the 3 eggs were mature, and they both fertilized (with ICSI) and created very good embryos.

Because we only had 2 embryos, we did a Day 3 transfer. One embryo was 7 cells, one was 8. We did assisted hatching and chose to use both embryos. Our doctor told us that with 2, there's a 50-60% chance of a live birth (75% one, 25% two, less than 1%

The ICSI and assisted hatching was preventative -- we don't know for sure that there are issues there, but our doctor suggested it might be prudent.

And it worked! My beta at 10 days post transfer was 58, and my beta at 12 days was 99. My clinic looks for a 60% rise, which we achieved.

Because of my immune issues, I went in today for an infusion of Intralipid, which keeps the immune system calm. I'll be doing that every ~3 weeks until 11 weeks, when we'll re-run the immunology workup. I'm on Heparin and the progesterone suppositories until 12 weeks (May 25), and on progesterone shots until 10 weeks (May 11). Our first ultrasound (with our IVF doc) is April 16, and our first ultrasound (with our fertility doc who's also our ob) will be two weeks later!

So that's how we got from here to there. We've learned a ton about infertility and how my body works, and we've had to really be our own advocates. Thank goodness we dropped our first doctor -- it's super important to really trust the experts you're relying on.

Next post I'll respond to Dea.nna questions about going gluten free.


  1. Congrats on your BFP and thanks for sharing your story!!

  2. Hello,

    I just stummbled across your blog and read through it.

    My story:
    Started trying for a baby in 2007
    3 failed IUIs in 2008
    2 failed IVFs in 2009
    2 failed Frozen embroyo transfer in 2010

    Switched RE's

    found out immune issues.
    (Same as you listed for yours). Also, (the a-ha) moment, TB skin test came positive.

    So currently I'm on INH. My question to you is--- Did you take INH and Humira consecutively?
    I started taking INH in may 2010. And was hoping to start taking humira in August 2010 followed by the IVF cycle in Sept 2010. My primary care advised to finish the INH dose (9 mths) before humira but not sure I can wait that long. How has your experience been with this?

    Also, I'm a patient at Dr. Zouves in Foster City, CA. Is that the Dr. you're seeing as well?

  3. Hi Anonymous - thanks for swinging by.

    I am indeed working with Dr. Z for my IVF cycles. :)

    He and the infectious disease specialist he sent me to were ok with starting the Humira as long as I was on the INH medication (so it would be suppressing the TB once my immune system wasn't). So I started INH a week or two before the first shot of Humira. Incidentally, I also didn't have seasonal allergies when I was on Humira, which was pretty awesome. They're back now, tho.

    I did one shot of Humira while on birth control pills, and then the second shot right before starting stims, two weeks after the first shot.

    Good luck with your cycle! Perhaps we'll end up in a waiting room together at some point, :)

  4. thank you thank you thank you...
    I've been searching all over for someone who was taking Humira with INH. and reading your blog makes me feel a tad bit better and confident of taking the humira shots before the 9mth INH treatment ends. I went to go see Dr. Singh for INH... Infertility is such a struggle..argh!

    Wish you all the best!! and yes, we might just end up in a waiting room together! Hope your current cycle is a success!

    **Question: I was really sad to read that your 1st IVF cycle didnt work. I was almost hoping it did while reading since you're almost in the same situation as me. Did the doctors ever find out what the reason was? (Not the immune issue, was it?)

  5. I also went to Dr. Singh - seems to be who Dr. Z sends people to... I was not impressed at my first visit, but he's been good at my followups and very supportive of my IF journey.

    We were able to confirm that the loss was a chromosomal issue - trisomy 16 - and that it was just bad luck. Doesn't mean we have an increased chance of it next time or anything, and it doesn't implicate my ability to carry a pregnancy successfully.

    So the fact that our first IVF cycle worked is a very good sign and we're confident we will have a baby at some point from IVF - hopefully this cycle of course. :)

    Feel free to send me email (anonymous or otherwise) at - I'm happy to share my personal email as well.

  6. I will email you : )