The Land of the F*cked

A recent series of posts at Airing the Chapel stirred up quite a bit of controversy. Airing observed a pattern in the replies: fertile women who never question Catholic leaders versus infertile women who do. I'm not at all interested in rehashing any of the debates over on ATC's blog (though I would be happy to discuss Augustine anytime), but I was struck by this division. On infertility blogs, I'll often hear people described as fertile and infertile. For example, "My fertile best friend came over yesterday," or "There's another infertile who works with me who...."

Infertile women seem to live in a different reality from everyone else. Our bodies don't work the way they should. Sex does not lead to pregnancy. For some of us, the normal process of menstruation is excruciating. For others, our cycles are completely unpredictable; our bodies are beyond our control. (The other day, I walked past the condoms at CVS and marveled that there is all this stuff designed to prevent pregnancy. I can't imagine ever again being in a position where I would fear getting pregnant. I barely remember what that was like, to feel like sex was this awesome thing that could actually bring a new person into the world.) 

So I can see why some of us feel like humanity is divided into fertiles and infertiles. But upon reflection, I think there is a division, but it's not between fertiles and infertiles. There are the folks who marry the love of their lives in their 20s, avoid pregnancy when they need to, get pregnant when they want to, and have healthy children. They live, or seem to live, in a land of sunshine and rainbows.

And then there are the rest of us, the inhabitants of what Anne Lamott calls "the land of the fucked." Those of us who wander for years longing for romantic connection, wondering why there seems to be a partner for every other woman, but not for us. Those of us who are stricken with cancer. Those of us who find ourselves married to abusive, alcoholic partners and who must choose between our most sacred vows and our safety. Those of us who get married, get pregnant, and find ourselves parenting children with developmental disabilities, or far worse. And of course, those of us who planned to have children, only to find it's not as easy as we were always led to believe. 

We, the inhabitants of the land of the fucked, ask the hard questions. We live at the margins of normalcy, in the grey areas. We make tragic choices. We hunger for compassion, only to find that the sunshine and rainbows crowd recoils from us. 

We frighten them because we know the truth: the separation between the two lands is a mere line in the sand, not a fortified wall. Anyone at any time could end up in the land of the fucked. Healthy living, prayer, good choices: these things offer no protection. Rather than face this reality, it's much easier to turn away, to take turns as Job's comforters, or to offer empty advice, "Just relax and it will happen."

No, it won't. But it would be better for you, emissary from the Land of Sunshine and Rainbows, to believe that it will. 

It was always in the back of my mind

I have an aunt who was infertile. When my periods started, along with the severe pain, my mom told me that Aunty V had also suffered from terrible cramps her whole life. When she was in her 50s, they found stage IV endometriosis; she had a complete hysterectomy and a bowel resection. Whenever I was doubled over with pain from my period, my mom would reflect that Aunty V had suffered the same way. And so, at the tender age of 13, I began to worry that I too would be infertile.

When I was 24, I met the man I wanted to marry. Unfortunately, he didn't want to marry me. He didn't think "we" were ready, but I really thought that meant that he didn't think I was ready. When I finally left him, a week before my 27th birthday, I remember thinking "My time is running out. I might never be able to have a baby."

Growing up with the specter of infertility has proved surprisingly advantageous in coping with actual infertility. I saw how my aunt and uncle lived rich, full lives. They traveled the world; they did all kinds of charity work. Though my extended family is dispersed all over the world, they found time to visit all of the branches of the family at least once a year. Their home is filled with beautiful artwork that they wouldn't have been able to afford if they had children. My aunt and my mom are both amazing cooks, but for my mom, who had to put dinner on the table, cooking was drudgery. For my aunt, who always had the option of going out to eat if she wanted, cooking was a passion. I saw first hand that infertility is not a death sentence. Living child-free can open you to the world.

Like many immigrant parents, my parents always emphasized education. My dad's sister never went to college because my grandfather believed that educating girls was a waste of money. My dad saw how his sister had to marry someone with no interests or social skills, because it was her only way to survive economically. My dad didn't want that for his daughters. He always told us that if we had an education and a career, we wouldn't have to get married unless we wanted to. Even when I was a teenager, I added in my head, "And if I can't have children, I will always have my career."

I've been thinking about this recently because I've been realizing that in many religious sub-cultures, women are supposed to be mothers first and foremost--not only mothers, but mothers of six, eight, ten children. While motherhood can supposedly be understood spiritually, many girls in these communities grow up with dreams of having big families, staying at home to nurture and educate their children, and then enjoying their grandchildren in their later years. For many people, this works out just fine, but for others, including us infertiles, life doesn't go according to plan. With one in six couples struggling with infertility, we need to do a better job of preparing our girls for a Plan B (no, not that one).

Girls need education. They need to be able to envision larger horizons and more creative futures. They need to develop talents and capacities unrelated to motherhood. Most of all, girls need to hear that motherhood is only one of several wonderful possible ways to love and serve one another.

Treatment for Infertility: When are the costs too high?

Jen at This is More Personal recently stopped blogging for the best of reasons: in December, she and her husband adopted a baby girl.

Jen's struggles have helped me so much in my own journey. After one round of IVF, which resulted in a chemical pregnancy, and a few canceled cycles, Jen and her husband decided they couldn't take any more. Jen's experience put words to something I had been thinking for a while: IVF has emotional, financial and physical costs that are rarely, or perhaps never, acknowledged by the medical profession. Reading through Jen's narratives of her IVF journey made me clearly see that IVF would break me. The stress of spending $15K on a twenty percent chance of getting pregnant, the mood swings that come with high doses of hormones (for whatever reason, I'm extremely sensitive to all medications), the anxiety of being constantly poked and prodded.....I knew I could not do that. The emotional, financial and physical costs of IVF would be too high for me.

(This actually had very little to do with most religious arguments against IVF. I'm not convinced that the unitive and procreative purposes of marriage should never be separated. As for the destruction of precious embryos....what was my body was doing with my embryos every month for a solid year? I was unlikely to produce dozens of eggs, and a couple embryos would probably have been safer in the hands of a competent embryologist than in my inflamed womb.) 

So instead, I turned to alternative therapies. I had always had a healthy diet, but for a solid year, I eliminated alcohol, sugar, refined grains, fried foods, and caffeine. I ditched exercise that I loved, like swimming and intense yoga and instead stuck to the brutally boring Fertility Yoga. I took my temperatures every single morning, stressing out when I ovulated a few days early, because of course, women with DOR "always" ovulate early (except when we are completely asymptomatic). I meditated, I prayed. I structured my days around what supplements I needed to take and when. My entire life became about trying to get pregnant.

It didn't work. Eventually, I realized that these alternative therapies also have high costs. When you give up activities and things that used to give you pleasure in order to get pregnant, and you don't get pregnant, month after devastating month, you begin to lose your soul. Eventually, I realized that I could not continue to live that way; even if I did eventually get pregnant, didn't my child deserve better than the person I had become: jealous, bitter, joyless?

So, I've stopped. I need to update my supplements page, because beyond a few vitamins for basic health, I've stopped taking them. I still do Fertility Yoga, but I also swim and go to Ashtanga Yoga once a week (even in the luteal phase). I'm still staying away from fried foods, because they really do make me feel sick, but if I feel no immediate benefit to eliminating a certain food, I just go ahead and eat it (in moderation).

More joy in my life makes it easier to face infertility, and the fact that I might never get pregnant. Because really, nothing--not even motherhood is worth my soul.

CD 1: Procedures and Policies

This is the last time I will announce CD 1.

Why? This is an infertility blog. The odds that I am not pregnant on any given month are far higher than the odds of a pregnancy. In my continuing quest to manage expectations, I'm going to expect my period fourteen days after ovulation.

To help me cope with CD 1, each month, I am going to do one small adoption-related task. This is jumping the gun a little bit. We want to see whether I'm still really infertile post-surgery, plus DH needs a job before we can actually apply to an agency. But adoption-related tasks and decisions will help me feel less desperate when my period arrives again. So for those of you playing along at home: until June, adoption-related updates will signify that another cycle has come and gone.

DH was turned down for a job last week, which was a bitter disappointment, right when my PMS was at its worst. But I started feeling better on Monday, when my period started in full force. Tuesday, I called Adoption Agency #1 with a list of prepared questions, mostly cribbed from Stirrup Queens. Actually, before I called, I had a full-on panic attack. I was convinced that the Agency would be quick to tell me that there was no way in hell any birthmother would choose us to be parents. I expected a long list of questions about our ages (too old, especially DH), our home (rented apartment), finances (lots of medical debt) and mental health (touch and go, most days).

But instead, there was lots of good news. Agency #1 adopts mostly Latino and African-American infants. They place about 25 children a year and have 15-20 families on the waiting list at any given time. The average wait is 6-12 months for 95% of their couples. The five percent of couples who wait longer usually have strict criteria for the birthmothers and potential children. (The agency led me to believe that these are the couples who only want white children who've been protected from any potential harmful substance their entire stay in utero. That's definitely not us.) So....6-12 month wait! That's crazy fast.

The money aspect looks like it will work out for us as well. For our recent wedding, we put the word out that we are saving money to grow our family through adoption and our friends and family were most generous. Plus, I get a generous adoption benefit through work. And the Adoption Tax Credit means that as long as we have the money saved up in advance, we probably will not bankrupt ourselves adopting.

[I would like to take a moment now to reflect on the fact that my (former) RE said that it was a "shame" that I wasn't willing to try IVF because my chances of success were a good 20% per cycle. At a cost of $11-15K per cycle. In what society is it reasonable to pay more than $30K for a chance to parent your genetic offspring?]

So for now, I'm not focused on CD 1, but the fact one day in the not-too-distant-future, DH and I will be parents.

Alternative Therapies: Restoring Fertility Yoga DVD

I ordered these DVDs in May of last year, and I have been using them most days (I took a break for my surgery and recovery). Each workout is 35-40 minutes long and coordinated with your cycle. There are four phases: Menstrual, follicular (end of menstruation to day 10), ovulation (days 10-14) and luteal. They claim to treat a variety of conditions that cause infertility: endometriosis, PCOS, irregular ovulation, etc. The creators of the DVD are practitioners of Chinese medicine, which views infertility as the result of imbalance in the body. The goal is to balance the various energies in the body, after which fertility should result.

Each workout is short. Even on days when I'm exhausted and busy, I can usually squeeze in Fertility Yoga. Before my surgery, the workouts seemed to be alleviating my cramps a tiny bit. (It would be unfair to expect 30 minutes of yoga a day to dissolve a 10-cm adenomyoma.) I love all the twisting and hip-stretches in the menstrual and follicular phases.

The authors are very on top of their Amazon reviews, and respond to the questions and comments therein. This is how I know that these DVDs have the potential to help women with DOR, but it takes as long as 13 months for new follicles to emerge.

This is where my issues come in. These workouts are very mild, probably because according to Chinese medicine, exercising to the point of depletion is a bad idea when trying to conceive. All well and good, but the exercises were so mild that after a few months, I had lost a lot of muscle. (I am a thin person who must really work at muscle building. I've never had nor desired a rock-hard, muscular body, but I don't want to be skin and bones, either.) While you can do other kinds of yoga, between the end of menstruation and ovulation, for me that's only one week, not nearly enough to prevent loss of muscle. The luteal phase yoga, on the other hand, offers no challenges for stretching or resistance for two weeks of every cycle. Doing this for a couple of months would have been fine, but for more than a year? It didn't seem like a good idea to scale back my exercise so much for so long.

Now that I'm not letting infertility steal my soul anymore, I still use these DVDs on days when I have no other workout planned--about 3-4 days a week. I go to my Vinyasa class, even after ovulation (though only once or twice a week). I go swimming because nothing, NOTHING soothes my anxiety like swimming.

The authors are very insistent that menstruation is a vulnerable time when women are pre-disposed to overextending themselves. I take their advice and just do the DVD menstrual phase workout and no other, which provides a nice rest during my period.

****This post is a reflection of my own experience and does not constitute any medical advice to anyone.****

Life post Surgery

Having the adenomyoma removed was the best decision I've ever made.

Pain: I am free from the heavy and painful periods I've had ever since I was a teenager! No more do I spend a day curled in bed vomiting. I do have some cramps and fatigue, but I usually take Aleve and get on with my day. I do have an upset stomach on CD1, but usually avoiding heavy or greasy food takes care of this.

Bleeding:  Instead of five days of heavy bleeding and two days of light bleeding, I now have three days of light bleeding. I thought there was something wrong with me, until acupuncturist informed me that the regular tampons are named thus because that's what most people use.

Energy: Lighter periods mean that I'm no longer in a constant battle with iron-deficiency. My energy is far, far better. Enough to get me through a ten hour work day, plus a work out, plus centering prayer, plus cooking dinner some evenings, cleaning, and practicing. For the first time in years, I spring out of bed easily instead of dragging myself out of bed after oversleeping my alarm by an hour. Exercising is no longer a chore; I go to the gym because I look forward to stretching and moving my body.

PMS: Before the surgery, I used to have a full week of PMS: fatigue, tender breasts and belly, irritability, despair. Now, I have one or two days of fatigue and a day of sadness.

Other benefits that may or may not be surgery related: I no longer have diarrhea most mornings. My sex drive is back (though that may not be surgery related).

Lingering problems: I still have my "spot" of pain on my lower right side. Dr. S says that he may have missed some of the adenomyoma or that I could have some ovarian issue causing pain (though my ovaries looked normal before the surgery--hypofunctioning, but normal). He said that as long as it's not interfering with my quality of life, I should leave it alone. I should give him a call if my periods get heavier or more painful.

Really, my only regret is that I didn't do this much sooner. I was making the best decisions with the information I had, but I do feel sad that diagnosis and misinformation took so many years of my life.

Infertility Vacation

I have had a lovely three months. No TTC, no charting, no obsessing during the 2WW.  After a year of thinking of myself as "the infertile one," I once again learned to see myself as a human being. Part of this was a tiny bit of self-delusion. I could almost tell myself that instead of being the couple without children, that we were the couple without children--yet.

But still, it was really good for me to have this time away from TTC. For one thing, after about a year of struggling with very low libido, my sex drive came back in full force after the surgery. I don't know whether this was because my body changed after the surgery, or because there was no pressure to have sex at a certain time on a certain day. Or maybe it was because we hadn't had sex in months by the time DH came home after working away, so I was just starving.

It was so wonderful to have sex just because we wanted to have sex and to reconnect with the idea that sex is pleasurable! and fun! Who would have thought? 

Another positive change was that now that for the first time in about a year, I'm enjoying my work again. Despite the constant drama at work, I really do enjoy what I do and I feel like I make a contribution to my field. 

The most positive thing is that overall, I have learned to love my life as it is. I enjoy good food, a loving husband, making music, my career, working out (I have so much more energy now that I'm not fighting iron deficiency all the time!), pets, church and prayer. I almost don't have time to enjoy everything. While I would like to be a mother and to grow our family, I no longer feel so desperate to have a child. I'm sure the dark times will come again, but for now, I am at peace.

A while ago, I read on a blog that "Infertility should be thought of as a terminal illness. Instead of destroying your body, infertility destroys your spirit." The blog has long vanished from the interwebs, so I don't know what became of the 29-year old whose ovaries had suddenly, inexplicably, and inexorably shut down. 

My advice is as follows: Don't let it. Don't let infertility destroy your spirit, steal your identity, and define your life. I was perilously close to spiritual death by infertility when stepping away from TTC saved me. 

Do what you have to do: adopt, commit to living child-free, focus on your career, hobbies, exercise. Whatever it is you have to do, do it. Just don't let infertility steal your soul.