MTHFR - a common gene mutation that can increase the risk of blood clots in pregnancy
NK - Natural Killer Cells (bad for pregnancy)
PAI-1 - a gene mutation that increases the risk of blood clots in pregnancy
PG - Pregnant or Pregnancy
POAS - Pee on a Stick
RE - Reproductive Endocrinologist
SHG - Sonohysterogram or Fluid Ultrasound
SIRM - Sher Institutes for Reproductive Medicine
TCM - Traditional Chinese Medicine
TCOYF - Taking Charge of Your Fertility
TTC - Trying to Conceive
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Monday, May 10, 2010
Lazy-a$$, do-nothing, follicles
As of this morning's ultrasound, we're sitting at 15, 14, 13, and a little something that might possibly be another follicle at 10 (but probably isn't diddly-squat). This is after 9 full days of stims.
Just to clarify, that means my follicles--the ones that are actually still there that is--have grown a grand total of *1mm in three days*.
And I might as well have only one ovary at this point because every single one of those lazy-a$$, do-nothing follicles is on the left side.
Not to be repetitive, but WTF?!???
This morning I had a minor meltdown after my appointment, thinking we were going to lose everything, but I laid down for a nap (since I'm now officially off work until retrieval) and woke up feeling at least slightly more zen. I think I was really tired.
First of all, I'm wondering if my right ovary may still be on vacation from the sclerotherapy it had a few months ago. If I'm remembering correctly, Linda over at I've got bad plumbing experienced something similar. (Are you still out there, Linda? We miss you.) Has anyone else here had sclero for endometriomas?
Secondly, I consulted Dr. Google and found some info suggesting that things can be slowed down considerably--at least for us DOR folks--when you suppress your body's initial big FSH surge (which we did since I came out of the gate too quickly on day 3 with a 12mm dominant follicle).
Of course, there's also the possibility that I'm just the crappiest responder imaginable.
Yeah, that's probably it. :(
So for now, the plan is to increase the Gonal-F to 750iu a day (gulp) and pray I'm not frying my eggs in the process. For better or for worse, we're off to NY tomorrow.
And can I be frivolous for just a minute and say how incredibly difficult it's going to be to be in NYC and not be able to shop? I mean seriously, this is cruel and unusual punishment.
Not to mention, every time we go I end up feeling like a total frump.
How is it that so many New Yorkers seem to have perfected that effortlessly chic thing? I mean it must be something in the water, right? A secret class you have to take before you can sign the lease on that rent-controlled apartment?
OK, I'm off to obsess over packing. I think I've officially talked myself into a bad mood again.
September 2007 - After years of dithering, DH and I finally decide to tie the knot and toss out the birth control. Yes, I'm 37 but I'm healthy, I watch what I eat, and everyone tells me I look younger (shouldn't that count for something?). Lots of women get pregnant in their late thirties, so this should be no problem, right? Being the control freak that I am, I pick up a copy of TCOYF and read it cover to cover.
November 2007 - Wow, this might actually be happening. Could it be this easy? It's only 6 or 7dpo but I'm having symptoms I've never experienced before. I have weird shooting pains in my breasts and it feels as though there's construction going on in my uterus. I nearly puke up my breakfast and my gums are so sore I can barely brush my teeth.
But before I have the opportunity to test I'm suddenly bleeding and lying in a fetal position on the bathroom floor with cramps that feel like I'm being stabbed with a knife. It's like nothing I've ever experienced.
OK, maybe it would be a good idea to be proactive and see an RE now. I'm sure there's nothing wrong but the obsessive in me says it can't hurt to check at my age, right?
December 2007 - My first ever ultrasound shows a 4cm endometrioma on my right ovary. I haveEndometriosis. FSH is normal at 5.4 but E2 is elevated and my AFC is only 8, including both sides, which indicates a diminished ovarian reserve. Nonetheless, I'm not too worried. Clearly we can conceive, otherwise I wouldn't have had such strong PG symptoms. The stabbing cramps must have just been a fluke?
January 2008 - Back for more testing. DH's sperm count is normal and an HSG shows my tubes are free and open. Meanwhile I have another cycle of strong early PG symptoms culminating in stabbing abdominal pains. After hours upon hours of internet research, I start to wonder if I have an immune issue. Dr. Google tells me that women with Endo often have immune-related implantation problems, but when I ask the RE about my theory he immediately dismisses it and attributes the cramps to my Endo. But if I've had Endo for years as he suggests, why would the cramps have only started when we began TTC?? The doctor has no answer to this. His recommendation: move straight to IVF without delay.
February 2008 - Time for a second opinion. Doctor #2 confirms the Endo but also pooh-pooh's the idea of immune testing as a waste of money. Like Doctor #1, he has little explanation for my symptoms. It's pretty clear that he thinks it's all in my head. He too recommends IVF. Meanwhile, I decide to try acupuncture.
March 2008 - I find Doctor #3's name on an internet board devoted to immune issues and fertility. Finally someone who actually listens with an open mind! She agrees that my symptoms suggest an immune problem, but the specialized tests I need cost nearly $2000 and the lab is out-of-network, which means my HMO won't cover them without special permission. I prepare the paperwork and await a response.
April 2008 - A few more preliminary tests reveal that I am heterozygous forMTHFR and homozygous forPAI-1--a clotting disorder. The treatment will ultimately be Folgard and Lovenox but we've decided no more TTC until the results of my more comprehensive immune testing are back.
May 2008 - Minor surgery to remove a uterine polyp.
June 2008 - Finally the insurance company pre-approves my out-of-network immune testing. The blood is drawn and shipped to the lab.
August 2008 - The results of my immune tests are in and we arrange for a telephone consult between my local doctor and the Beer Center in California to review them. As it turns out, I have anti-ovarian antibodies (for which there is no treatment--that's great) and highly elevated levels of Natural Killer cell (NK) activity. The Beer Center doctor confirms that it would be impossible to carry a pregnancy beyond 10dpo with my NKs at their current level. Essentially, my body attacks my embryos as if they were tumors each time we conceive. This is the reason for my stabbing abdominal pains. It's an emotional moment for me. All my fears have been vindicated. Why did it take 10 months and 3 doctors to finally reach this point?
The recommended treatment is multiple infusions of IVIg(intravenous immune globulin) which cost somewhere in the neighborhood of $2500/dose, and LIT (lymphocyte immunization therapy) which has been banned by the FDA and would require a trip to Mexico. Wonderful.
September 2008 - Am I completely crazy? Somehow I convince DH to travel to Nogales, Mexico for LIT. We return for the second treatment 4 weeks later. Meanwhile, we close on our first house.
October 2008 - My first appointment with a local Immunologist. My HMO won't cover prescriptions written by out-of-network doctors and since the Beer Center is out-of-network, their prescription for IVIg can't be covered. My only chance is to convince an in-network Immunologist (who knows nothing about reproductive immunology) to sign off on the Beer Center's orders. Even then, there's a strong chance the insurance company won't cover it. In an unbelievable stroke of good luck, the local Immunologist agrees.
November 2008 - I am in shock. My HMO has pre-approved coverage for monthly IVIg treatments at 100%. Because my Immunologist submitted the orders under a generic code for auto-immune disorders, they have no idea the treatment is fertility-related. I undergo my first home infusion.
December 2008 - Repeat immune testing shows my NK activity has dropped below the Beer Center's recommended threshold of 15%. Finally, we're cleared to try again!
January 2009 - My first, short-lived chemical pregnancy. We're disappointed but still relatively optimistic. This is the furthest I've ever gotten and, for the first time, I have no stabbing cramps! Maybe this was just a bad egg.
Feb-Mar 2009 - Something still isn't working. My monthly IVIg infusions are keeping the cramps away, and I'm having the same early PG symptoms again, but nothing seems to stick. My doctors are at a loss to explain the problem. Again they recommend IVF but we balk. I'm still convinced I have an implantation problem and what good would IVF do if I can't implant? Maybe what I really need is surgery to remove the Endo. The endometriomas are growing and I now have them on both ovaries.
April 2009 - My RE is totally against surgery. Although my FSH is still good at 5.6, he is concerned that I would sacrifice too many eggs, when my reserve is already low. Despite his recommendations, I decide to move forward. Maybe it's inflammation from the Endo that's keeping me from implanting? At this point, it feels as though my options are limited. Status quo isn't working so what other choice do I have? He performs the laparoscopy, removes chocolate cysts on both ovaries, and officially diagnoses my Endo as stage III. Another uterine polyp is removed at the same time.
May 2009 - While waiting for my surgery to heal, we return to Mexico for an LIT booster. I'm also tested for Vitamin D, which comes back alarmingly low.
June 2009 - I decide to follow up my lap with a monitored Clomid cycle. I've never tried Clomid, so it has to be worth a shot, right? At my first ultrasound, the nurse breaks the news that the endometrioma on my right ovary is back. Unbelievable. Cycle is a BFN, with no symptoms whatsoever.
July 2009 - In preparation for my second Clomid cycle, the nurse draws day 3 bloods. My FSH is 17.4. Oh my God, the doctor was right--I should never have had the surgery. What have I done?!
August-Sept 2009 - I continue my monthly IVIg infusions on the off-chance that something sticks, but I'm done with Clomid. All optimism is gone. I don't even have early PG symptoms any more. Clearly my own arrogance and stupidity has ruined my chances for a biological child. I deserve to be unhappy. Depression descends.
October 2009 - For the first time in months I'm thinking about fertility again. Maybe it's not over after all. We could still try donor eggs. It would be ridiculously expensive, but if I could figure out our implantation issues, it might be worth a shot. Maybe we just had crappy eggs all along and didn't realize it?
November 2009 - In yet another consult with Dr. Google, I stumble across information on a protein called Beta-3 Integrin that apparently is vital to the process of implantation. It seems that many women with Endo, have also been found to lack this protein in their uterine lining. The research is scanty and somewhat controversial, but preliminary studies suggest that women who lack Beta-3 Integrin tend to fail IVF at rates of >80%. Treatment is 2-3 months of Lupron Depot to reset the uterine lining. Could this finally be the answer to my implantation problems? My RE isn't familiar with the test but she agrees to do the endometrial biopsy and mail the sample to the lab.
December 2009 - The test is negative. Oh my God--have I finally found the solution? Unfortunately, my RE advises that she just isn't comfortable treating something she knows so little about. I'll have to find a new doctor, willing to treat both immune issues and a Beta-3 Integrin deficiency. It was hard enough finding someone to treat just the immune stuff. Why is it that every problem I have seems to be controversial? I consult Dr. Google again. There's a doctor at the SIRM office in NYC, who appears to treat both issues--unfortunately, my HMO won't cover out-of-State providers. I'll have to switch to a PPO and risk losing my IVIg coverage. Luckily, December is open season.
January 2010 - DH and I travel to NYC for a consult at SIRM. I like the doctor there a lot. Hallelujah--he agrees to treat both my immune issues and the Beta-3 problem. He even thinks I may still have a shot with my own eggs. Maybe my FSH was elevated due to residual trauma from the surgery? Our plan is to do sclerotherapy to address the endometrioma on my right ovary. From there, we'll move straight into IVF with a freeze-all cycle. Following retrieval, I'll do 2 months of Lupron Depot to address my Beta-3 problem. I'll also do IVIg or intralipids to make sure my NK levels are nice and low (and probably another round of LIT as well, although SIRM doesn't recommend this). Assuming all systems are go, we'll then do an FET.
I can't believe we're finally going to do IVF. While my new PPO covers the basics at SIRM, the IVF is self-pay and it isn't cheap. Per Dr. T, our chances of success are only 15%. What am I doing--have I completely lost my mind? How have we come to this point?
February 2010 - We travel to NY a second time for the sclerotherapy, and a sonohysterogram (SHG) to make sure no uterine polyps have returned. The SHG is clear and Dr. T drains the endometrioma with no apparent issues.
In other news, my new insurance company denies payment for my January IVIg infusion. It appears that particular bit of luck has finally run out. IVIg is just too expensive to self-pay, so it I guess it's on to intralipids from this point forward. At ~$300/per bag/per month plus infusion costs, that isn't cheap either but we don't have much choice. The Beer Center doesn't seem to think much of intralipids but SIRM claims they're just as effective as IVIg. Here's hoping SIRM is right on this one.