I woke up, saw the blood on the sheet, and said "Ooooh shit."
I told my mother who smiled congratulated me and then said "Arn't you glad I didn't slap you?!" (in some cultures/religions first mensus is rewarded with a slap because, you know, now you're the vessel for original sin and should immediately be punished and all)
By the time I got back from the bathroom my great Aunt was on the phone which meant my mother had already called my grandmother who immediately called her sister who immediately called me. Thus is life in a Jewish family.
Oh shit indeed. Because what I didn't know was that from that time on "health" would become entirely subjective.
I remember the episodes. They came on unexpectedly and left me laying on the floor of the bathroom curled in a ball crying and wishing I could magically transform into a boy. Luckily (or so I thought at the time) they only came a few times a year. We were told it takes some girls a while for their cycles to become...well...cyclical.
By the time I was 16 they still were not regular. A visit to my mom's OBGYN (because nothing says mother/daughter bonding like sharing a doctor whose job it is is to shove cold metal instruments in your lady parts) we were informed that for some girls cycles just don't come regularly but combined with my recent unexplained weight gain and horrible pizza face acne despite atomic acne drugs (Acutane anyone?) they thought the best course of action was "The Pill" (birth control pill for you menfolk).
At 17 when I became sexually active and still wasn't menstruating regularly I had multiple "oh my god I'm pregnant" freak outs. Had I known how elusive pregnancy would be for me, huddled with a watch in the bathroom at my best friend's house staring at a pregnancy test not even knowing how many lines I wanted to see, I would never have been so nervous. You see I'd only ever wanted to be a mother. For as long as I can remember. I wanted a big family. 5 kids or so. Other people were driven to become doctors or teachers etc. I wanted to be a mother and everything I did between then and birthing my children was just filling the time. So when at 18 I went to a different OBGYN by myself for a routine visit and in walked a doctor I had never met who skipped any introductions and just stared at my chart and talked really fast saying "You'll probably never get pregnant on your own you'll need to come in for drugs to help you have kids." I. Was. Destroyed.
I believe I was 20 when I contracted an illness that required antibiotics. The doc told me it would be pointless to take the pill while on the antibiotics so I didn't take them. I got sick (or maybe it just never went away) again the following month and did another course of antibiotics and didn't take the pill. Two months with no "pill".
It was as though clouds I hadn't noticed were there parted and the sun shone down on me for the first time. I was happier, more stable, less crazy. I had thought I was just another casualty of teen-hood. I went in to my teen years and came out a crazy bitch. I didn't know I could be any other way. And that was on a low dose pill. I vowed never to go on the pill again.
Slowly over the course of about 2 years I put on even more weight. My hair thinned. Acne was still terrible. Still only got my period a few times a year. Doctors seemed to be at a loss. They could continue giving me the steady stream of drugs and antibiotics for the acne. I could go back on the pill. That was it.
In 2002 right before I started graduate school my grandmother showed me an article in her diabetic's magazine and said "This sounds like you." It was there I learned about PCOs (Poly cystic ovary syndrome) its link to insulin resistance (before it was cool) and the diabetic drug glucophage (generic: metformin) which seemed to be helping women with PCOs. I went to see an endocrinologist who had no idea what I was talking about but agreed to give me a prescription. I took it and was sick for about 6 months straight. I was in grad school and living away from home. I was nauseated and had stomach pains for most of every day. I couldn't eat anything but mozzarella sticks. After a full day of classes I'd go out into the woods with some friends, smoke pot, and then finally be comfortable and able to eat. Then I'd get the munchies and end up eating exactly the crap that I was supposed to avoid. I didn't have anyone to explain how insulin and sugar worked or how different sugars effect your blood sugar or hidden sugars or combining protein with sugars so the insulin didn't spike.
PCOs is a syndrome because its symptoms vary from woman to woman. Not every woman will have all the symptoms. To break it down very very simply imagine insulin in your body looking like a little puzzle piece. It is meant to fit perfectly with sugars to digest them. In my body the puzzle pieces don't fit properly. So, my body says "hey, I need energy - eat something!". When the sugar hits my system the insulin can't digest it or turn it into energy because it doesn't fit correctly. So my body thinks I still haven't eaten. So it makes MORE insulin to make me want to EAT MORE. EAT MORE SUGAR especially. My body also thinks its starving because though I eat, the food isn't actually being turned into nutrients so it automagically stores everything as fat. The high levels of insulin and fat cause hormonal disruptions. The hormonal disruptions - mostly high testosterone and low estrogen and progesterone - cause annovulation (no ovulation) and infertility.
Isn't it lovely. First it gradually turns you into a man. Then if you can actually find a man who doesn't mind chest hair on his woman it takes away your ability to have children, then it kills you early. And I repeat - this is the leading cause of infertility for women. You absolutely know someone who has this (other than me). It is estimated that about %10 of women have it to some degree or another.
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| At least I can get work as a carny |
It wasn't until my summer off from grad school that I got myself a bunch of books and started to learn. I learned how PCOs is vicious cycle. That the one thing that makes it go away (losing weight) is also the thing it actively prevents you from doing. I learned how it is very common (leading cause of infertility in women) but that so little was known at that time that doctors didn't know what to do for women who had it beside put them on the pill which masks the symptoms but doesn't actually fix the problem and certainly isn't helpful if you're trying to have a baby. I learned how to eat to control my sugar levels. I cut out a great deal of things and replaced many others with healthier options. I learned about herbs and supplements that could help. High protein, low carb. Cut out androgen disruptors like soy, and certain cooking oils. Never store food in plastic. Never microwave. The list is exhaustive and I wrote a different blog post about it a while ago. Its been so frustrating that no matter what I do, No matter how many changes I make, my body doesn't budge. If I do them all my weight stagnates and I don't menstruate. If I stop I gain weight which makes it worse.
It it took a very long time for the metformin to work. 2 years actually. 2 years before my moon was predictable - cyclical. Two years of nausea, stomach pains, and arguing about what to eat because NOTHING was appetizing - ever. The first time I knew when my moon was coming it was falling on my wedding day. PMS the week leading up to my wedding and a bloody honeymoon?! No thanks! I went to the doc and got some progesterone to bring on my moon early so I'd be in the clear for the wedding.
And I was.
I'd also rebooted my system. I didn't know a tenth then of what I know now about my body and fertility and well..... everyone knows Magdalena :-)
Pregnancy was wonderful. Everything that plagues me when I'm not pregnant went away. I was healthier than I'd been in many years. Pregnancy makes the PCOs go into a kind of remission. For some women it is permanent. I was not so lucky.
A few months after Magda was born, knowing we wanted more children and wishing to get ahead of the problem we went to see a fancy fertility specialist. Sitting in his very posh office he told me despite my healthy baby bouncing on my lap that
- I'd never get pregnant on my own again without his help
- my daughter was a fluke
- I needed to go back on the pill for a few months
- I needed to take Metformin again - forever.
- that I needed to exercise for at least an hour every day for the rest of my life
- and be on a permanent Atkins diet for the rest of my life.
He was a complete asshole with a massive god complex. HE would MAKE me pregnant. There was no other way. (FYI his name is Steven Palter from Gold Coast Fertility and I highly recommend you take your precious ovum and run as far away from him as possible)
I went back to my books (and the internet now thankfully) and vowed I could do it without his expensive hormone peddling douchy help. It took the better part of a year (which is actually completely normal) but we conceived Tristan on our own.
Again pregnancy was great.When Tristan was about 6 months old we started working on baby number 3.
We've been working on it ever since.
I remember when I first began learning about PCOs and the few medical options available to me. I read about a surgery where they removed a section of the ovary kind of like cutting out a wedge of cake. I remember thinking that that would be at the bottom of my list. That there were so many other options one was bound to work. I also remember thinking I'd never get to the bottom of the list. The modern version of this surgery is called Ovarian Drilling. A laproscopic procedure where they poke holes in the ovaries and cauterize them at the same time. Ovarian Drilling - obviously named by a man.
It has been 14 years since my journey with PCOs began (really it started when I first hit puberty but we couldn't have known then). In that time I've completely altered my diet. I've been on nearly every supplement recommended for androgen problems, insulin problems, menstrual problems, sometimes so many at once it was a financial burden and so filling I couldn't even eat after taking all the pills. You might think not eating would be a good way to lose weight but you'd be wrong. If I don't eat regularly it actually seriously exacerbates the problem. I've exercised at various intensities for periods of time most notably the entire year leading up to my sister's wedding when I diligently shlepped my two babies to a New York Sports Club in Long Beach 3 times a week. And true to the difficulty inherent in living with PCOs - I lost NO weight.
I even tried going back on Metformin three times all with the same result. Even a lower dose. Even the extended release. Even the name brand. They all made me sick to my stomach. I longed for the days of grad school when I had no little ones and could afford to be sick or stoned all the time.
I've had two miscarriages in the last 5 and a half years. After the first I went to see a different Reproductive Specialist. Joseph Pena of Long Island IVF. Also a total asshole. I told him when I sat down that I was just looking for information. I wanted to know what options "medicine" had for me. I'd just finished bleeding after the miscarriage. I was very knowledgeable about my "condition". I was also very diligent in charting. A way of keeping track of fertility by taking your basal body temp every morning and checking cervical mucous (yum) and mood, and many other things which can and do tell you when what is going on in your body. He refused to look at my charts. He insisted I knew nothing about PCOs or my body. He told me he didn't believe that I'd had a miscarriage or had ever been pregnant because I hadn't had a blood test to confirm it. Asshole. And he repeatedly pushed a stack of financial aid paperwork for IVF (in vitro fertilization) at me. Their big money maker.
After the second and far more devastating miscarriage in January of 2013 I went to a third fertility doctor. I liked him. He was a kindly white haired old man who reminded me of Orville Reddenbacher. I told him about my experiences with the other doctors and he was embarrassed on behalf of his occupation. He looked over my charts. He took seriously my knowledge, my history, and all the "crazy" herbs and supplements I had tried. My desperate aversion to Metformin and the birth control pill was understood and not brought up again. His name is Richard Bronson of Reproductive Services of New York. Having PCOs limits what even the fertility doctors can do. The very hormones I am lacking, the ones they hand out like candy to other women, have a high incidence of over stimulating a woman with PCOs. Ovarian hyper stimulation is no joke. It hurts. Aaaaaand it leads to multiples. I'm not talking twins. I"m talking octomom. So we did Clomid, a common fertility drug which brings on maturity of the egg and ovulation. The low and medium doses didn't work on me. The high doses were torture. It feels like menopause - mood swings, sweats! and of course I took it in August. Clomid itself if taken too long increases the risk of cancer. This doc limits it to a very conservative 6 rounds. By our 6th round we were getting desperate and added a trigger shot (a shot of a hormone that forces the last bit of maturation and ovulation so fertilization can be timed perfectly) and an IUI (intra uterine insemination) a.k.a. turkey baster. The whole time I was under their care I had the constant morning routine of getting blood drawn and having trans-vaginal sonograms (worst dildo ever). They were running out of places to draw blood from that weren't black and blue.
None of that worked either.
I'd been looking into yet another supplement called Inositol that was entirely different than Metformin and yet did the same thing. It regulated the sugar/insulin problem only without making people sick. It had had many trials and studies done and ALL were promising. I used the dosages and recommendations from the studies and began to take it. We also scheduled the surgery. Dr. Bronson, at a loss for what else to do for me, brought up this unknown supplement a colleague of his had been studying. INOSITOL. I told him I'd already started and he was very supportive. Blood tests confirmed a significant decrease in my testosterone. We were relieved and excited. We cancelled the surgery. For a few months it seemed to be working. My moons were coming closer together, hurting less, the blood was healthier. And then it just stopped.
Everyone insisted that stress was causing the problem. Stress over not having a baby most of all. So I pretty much took this past year off from that. Trying but not really trying. I stopped the charting, the testing. I did a lot more "fun" things that I had avoided doing because I was "trying to have a baby". These usually involved alcohol. I've did a lot of soul searching. I've improved a great deal in how I handle stress. How I treat myself. How I make myself happier. Instead of making things better it is been 10 months since I last ovulated. I've had two bleeds but they came because my womb just said "oh fuck it I can't hold this anymore". In the last 5 months I"ve not even bled. I spotted for a couple of days every two weeks for 2 months. Desire for more children took a back burner to worrying about being alive for the 2 I have. I went back to the doctor to make sure there was nothing ELSE wrong. There was nothing new. My ovaries showed the typical signs of PCOs but not bleeding for so long is a big concern. We discussed my whole history and what options were left to me.
- I could go on the pill for the rest of my child bearing years (and obviously have no more children and possibly a stint in a sanitarium)
- I could go on progesterone for 10 days every month to bring on a bleed (progesterone is awful! again, like being in menopause and pms only when you're done you get to go through regular pms and THEN bleed heavily and painfully)
- I could do the ovarian drilling.
So we booked the surgery.
The studies show that %50 of the women who undergo the surgery spontaneously begin ovulating on their own. The surgery is usually recommended for women who don't respond well to fertility drugs - like me. Of the other %50, a large majority of them become responsive to drugs and supplements and lesser invasive treatments after having had it.
SO there is a very good chance that this surgery will work for me in some way. It will, by virtue of literally burning it out, remove some of my body's ability to create testosterone. PCOs is, as I said, a vicious cycle. I've tried interrupting the cycle in various ways over the years. Through food, through drugs, through herbs/supplements, acupuncture, hypnosis. The ovarian drilling will interrupt the cycle in a new way. In a way I can't influence no matter how careful my diet or how many disgusting herbal tinctures I take. Everyone assumes that I've just reached a new level of desperation in my quest to have a baby. I hope this long history helps you all to understand - its not about a baby. I never imagined all those years ago that I would reach the bottom of that list of options. I can't believe I'm here facing this. I DON"T want to do this. I HATE hospitals. I have a phobia of IVs so bad it was the driving force which lead me down the road to home birth! I am crying now typing this because the surgery place just called to give me particulars about tomorrow and it has made it VERY VERY real. But, for the sake of my long term health, for the sake of my quality of life. I have to do this. I have to try. I have to have hope that this "drastic" measure will work where all the gentler less invasive things didn't.
So please think of me. Not necessarily prayers for my recovery because as surgeries go this isn't so bad. As recovery periods go, this isn't so long. Pray that it works. Pray that it marks the end of this long drawn out nightmare I've been living my entire adult life. This subtly invasive, invisible, and traitorous syndrome which steals, femininity, fertility, vitality, and health. Pray that it works. Because if it doesn't there is really nothing left on the list.
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Thank you for taking the time to read my ramblings...I think.