Friday, June 14, 2013

Diving into the Chattersphere

I should have known better than to begin a Google search with the phrase, “one follicle on ovary.” It was like a S.O.S. message sent out into the World Wide Web. Of course, the internet doesn't send a single rescue ship, it bombards you with never-ending pages of more and more random and tangentially related information. Sure, you get an answer, but if it's not the one you're looking for, you just keep looking ad nauseum.

The first thing I confirmed was that one follicle on an ovary was rare. So rare, or perhaps so demoralizing, that no one was talking about it out there. Women were crying over having three, four and even just six follicles. Bitches. My numbers aren't good...only seven follies. I quickly discovered in the message boards of fertilizing women that this special club requires a serious cram session to learn a long list of abbreviations and shorthand, like “follies” for follicles.

You don't believe me? See for yourself:

TTC ~ Trying to Conceive, AF ~ Aunt Flow (period), AHI ~ At-Home Insemination, AI ~ Artificial Insemination, AID ~ Artificial Insemination from Donor, AIH ~ Artificial Insemination from Husband, AO ~ Anovulation, BD ~ Baby Dance, BBT ~ Basal Body Temperature, BCP ~ Birth Control Pills, Beta ~ Serum Pregnancy Test, BG ~ Blood Glucose, BSE ~ Breast Self-Exam, BTB ~ Break Through Bleeding, BW or b/w ~ Blood work, BOB ~ Baby on the Brain or Baby Obsessed Brain, BFN ~ Big Fat Negative (pregnancy test), BFP ~ Big Fat Positive (pregnancy test), CY# ~ Cycle Number, CCCT ~ Clomiphene Citrate Challenge Test (Clomid Challenge), CD ~ Cycle Day, CF ~ Cervical Fluid, CM ~ Cervical Mucus, CNM ~ Certified Nurse Midwife, COH ~ Controlled Ovarian Hyper stimulation, CP ~ Cervical Position, DH ~Dearest Husband, DD ~ Darling Daughter, DP ~ Darling Partner, DS ~ Darling Son, D&C ~ Dilation and Curettage, D&E ~ Dilation and Evacuation, DE ~ Donor Eggs, DI ~ Donor Insemination, DPO ~ Days Past Ovulation, Dx ~ Diagnosis, DTD ~ Do the Deed, E2 ~ Estradiol (Estrogen), EB, EMB ~ Endometrial Biopsy, EDC ~ Expected Date of Confinement (Due Date), EDD ~ Estimated Due Date, ENDO ~ Endometriosis, EPT ~ Early Pregnancy Test, ERT ~ Estrogen Replacement Therapy, EW ~ Egg White, EWCF ~ Eggwhite Cervical Fluid, EWCM ~ Eggwhite Cervical Mucus, FP ~ Follicular Phase, FHR ~ Follicle Stimulating Hormone, FMU ~ First Morning Urine, FM ~ Fertility Monitor, GP ~ General Practitioner, HCG or HCG ~ Human Chronic Gonadotropin, HCP ~ Health Care Practitioner, HPT ~ Home Pregnancy Test, HRT ~ Hormone Replacement Therapy, HSC ~ Hysteroscopy, HSG ~ Hysterosalpingogram, HTH ~ “Hope that helps”, IF ~ Infertility, IM ~ Intra-Muscular (injections), IVF ~ In Vitro Fertilization, IUI ~ Inter Uterine Insemination, KWIM ~ “Know what I mean?”, LAP ~ Laparoscopy, LH ~ Luteinzing Hormone, LMP ~ Last Menstrual Period (1st day of red flow), LP ~ Luteal Phase, 2WW ~ 2 Week Wait (luteal phase), LSP ~ Low Sperm Count, MC, m/c ~ Miscarriage, MF ~ Male Factor, NP ~ Nurse Practitioner, O, OV ~ Ovualtion, OB ~ Obstetrician, OB/GYN ~ Obstetrician/Gynecologist, OC ~ Oral Contraceptives, OCP ~ Oral Contraceptive Pill, OD ~ Ovulatory Dysfunction, OHSS ~ Ovarian Hyperstimulation Syndrome, OPK ~ Ovulation Predictor Kit, OPT ~ Ovulation Predictor Test, OTC ~ Over The Counter, P4 ~ Progesterone, PA ~ Physicians Assistant, PCAP ~ Polycystic Appearing Ovaries, PCO ~ Polycystic Ovaries, PCOD ~ Polycystic Ovary Disease, PCOS ~ Polycystic Ovarian Syndrome, PCP ~ Primary Care Physician, PCT ~ Postcoital Test, PG ~ Pregnant, PI ~ Primary Infertility, PID ~ Pelvic Inflammatory Disease, PMS ~ Premenstrual Syndrome, POC ~ Products of Conception, RE ~ Reproductive Endocrinologist, RI ~ Reproductive Immunologist, RPL ~ Recurrent Pregnancy Loss, SA ~ Semen Analysis, S/b, SB Stillbirth, SI ~ Secondary Infertility, SO ~ Significant Other, TTC ~ Trying to conceive, TL ~ Tubal Ligation, TR ~ Tubal Reversal, Tx ~ Treatment, TIA ~ Thanks in advance, TAB ~ Taking A Break, UR ~ Urologist, US, u/s ~ Ultrasound, UTI ~ Urinary Tract Infection, V ~ Vasectomy, VR ~ Vasectomy Reversal.

The only abbreviation I could not find was:

JFCS ~ Jesus Fucking Christ, Seriously?

Clearly, these women spoke a special language among themselves. I couldn't decide if it was brilliant or insane. Regardless, if I wanted to dive into the online community of sisterly support (and it is a powerful one), I would at least need to familiarize myself with the elaborate code talk.

As a newbie, however, I wasn't even familiar with many of the actual terms that were abbreviated. “Egg white cervical mucus”? Yuck. What the hell is that and please tell me it's not in my body. No, scratch that. Don't tell me what it is at all. I want to forget all about it.

Another thing I quickly learned from the internet chattering is that doctors disagree about the best course of “treatment” to rev extra egg growth. There's nothing like prominent doctors sniping at each others' techniques to make one feel insecure about one's own treatment program. Is my doctor's go-to protocol wrong for me? Would another doctor's technique work more wonders for me? Panic, doubt, frustration trampled through my psyche.

The controversy that scared me the most was the use of birth control pills to suppress follicle growth prior to revving it up with stimulation hormones. Sometimes, the BCP (you will only have to learn a few abbrevies! This one is Birth Control Pills) over-suppress follicle growth, especially in women my age. Maybe that's what happened to me. After some initial cursing at the imperfections of medical science, I put a positive spin on it.

Maybe I have dozens of teeny tiny suppressed follicles unseeable by the naked eye that the stimulation drugs will kick into high gear. After my long swim through the internet swamp, one thing I knew for sure was that women respond differently to different protocols. Doctors don't always know why. Much of this process is still a guessing game. Surprises happen every day. Unexpected results show up with no explanation. And established practices and assumptions can be wrong.

For example... Recently, fertility doctors have begun using a new blood test for Anti-Mullerian Hormone (AMH) to predict what they call our “ovarian reserves.” In other words, it's a test they believe indicates how many eggs you have left in your basket.

When Nurse J went over my blood test results with me on April 9, she told me my hormone numbers looked good, meaning good enough to proceed with the treatments. My FSH (follicle-stimulating hormones) was at 6.8 and the docs like to see it below 10. My E2 (estradiol) was 47 and the docs like to see it below 100.

But on the AMH results, she was less clear. My AMH number was 0.18. When I asked her what was ideal, she said she was not sure but thought “2” was OK. She was obviously uncertain about it. I'm guessing it's because she's new at this and also the test is relatively new.

When I Googled AMH at home, however, I learned “2” was not OK, but rather an ovarian death bed number. And when a woman goes over the fertility cliff into menopause, the AMH numbers drop to almost undetectable levels. Um, wasn't 0.18 almost undetectable? What the fuck?

I don't know why I didn't have an instant panic attack when I learned this tidbit. Maybe that's why Nurse J did not tell me all the details when I was at the clinic. Let her figure it out at home, when she can lie in her bed and cry as loud and as long as she wants...

One follicle. Almost undetectable AMH. Wow. I'd never in any aspect of life (except in tests for my level of procrastination) scored so flat out terrible on something. This was an unpleasant surprise. It did not seem possible that my body, which had served me so well and with such great health all these years, would now betray me on this most important thing.

I sent another S.O.S. out into the World Wide Web. (Remember, if at first you don't like the answer you receive, try, try again...)

Then it appeared, like a life raft bobbing up out of the endless sea of information: a recent study showed that low AMH numbers in women over 42 did not accurately predict low egg numbers as was previously assumed. In younger women, the study confirmed, low AMH coincided with low egg production each cycle. But miraculously, after 42, women with low AMH and good levels of FSH (like me) actually produced "surprisingly excellent" eggs in amounts higher than much younger women with good AMH levels. High five for the older ladies!

Hallelujah. Perhaps it's just a straw, but I grasped tightly at it. I even sent the study to Nurse J and Dr. P, knowing that it might give other women like me hope. Nurse J said the study was legitimate and from a source they regularly use to keep up with the latest in fertility studies. In fact, she told me, she had already given it to a woman in her 40s who was about to walk away from trying fertility treatments because her AMH levels were so low. The study changed the woman's mind. That is the power of scientific advancement. With new knowledge, our decisions are better informed, and in this case, we realize our options are wider than we realized.

But why did I have to find this information myself? I realize doctors are busy with the business of doctoring, and that they don't have time to teach an in-depth class on female fertility to every patient. But clearly a massive number of panicked, confused and hormonally super-charged women are out there looking for answers about their fertility treatments that they are not getting from their doctors. Most turn to the internet, where information is less than reliable, and often the cause for more confusion than enlightenment.

Perhaps the fertility industry, with the extreme profits it collects from desperate women, could publish a reader-friendly manual to explain the basics of the treatment process, and hand the damn thing out to women on their first day at the clinic. It would save us all a lot of trouble.

To that end, here is the AMH study I mentioned earlier that was done by the Foundation for Reproductive Medicine and The Center for Human Reproduction in New York:

The hope it provided me helped make my decision. I will start shooting myself up with lady hormones on April 12 and hope to see more follicles blossoming at my next ultrasound.

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