Dark Night of the Soul

The day the nurse called to tell me that my FSH was high was among the darkest days of my life. I cried for weeks. But through that time, I had the most remarkable feeling of being loved through my grief. I felt the love of God, and the love of my dear husband, who unequivocally stated over and over again that even if we could never have biological children, he wouldn't want to be married to any other woman. I remember sitting in my favorite place at work, grading papers on a Saturday afternoon and just feeling flooded with love.

Masters of spirituality such as John of the Cross and Theresa of Avila call that experience of God's closeness and love consolation. The feeling of God's absence or silence is called desolation, or the dark night of the soul. Consolation and desolation happen independently of your emotional state, or of what is happening in your life. My period of consolation coincided with one of the saddest periods of my life. 

At the moment, I am in a period of desolation. Unfortunately, this desolation is coinciding with DH losing his job, my waning faith that I will ever get pregnant and, at the moment, horrible PMS and the knowledge that I am not pregnant.

I am finally ready to try Natural Cycle IVF but we do not have the money. We are not paying down debts; we are not saving money for adoption. DH has been looking for jobs, but every lead has come up empty. 

In truth, he lost his job months ago, but I was sick of thinking and writing about infertility. I just couldn't write about having to come up with a new plan all over again. And every plan requires thousands of dollars that we don't have. 

Above all, I am tired. I am tired of being positive, of swimming against the temptation to despair and depression. I am tired of the never-ending roller coaster of hope and disappointment. 

Every month, I think, "Perhaps things will change this month. Maybe we'll finally conceive. Maybe DH will get a job this month." And each month, nothing changes. We do not conceive. DH does not find a job. 

Nothing ever changes.

What's wrong with me, Part I: Adenomyoma

Adenomyosis is a condition in which the endometrial tissue in the uterus goes crazy, invading the muscular wall of the uterus. Like its cousin, endometriosis, it causes severe pain with menstruation.

Instead of diffuse adenomyosis all around my uterus, I have an adenomyoma, a focused growth in one, large, painful place at the top of my uterus.

Some women have pain from adenomyosis all the time. I'm relatively lucky; I have mild pain the week before my period, severe pain and vomiting on day one, and mild pain that I control completely with Aleve days 2-3.

It's unclear whether and how such an adenomyoma affects fertility. In endometriosis, the endometrial tissue grows outside of the uterus, causing a toxic environment for fertilization and affecting ovarian health. In adenomyosis, the endometrial tissue is more or less where it's supposed to be. Thus, most doctors will tell you that women with adenomyosis might have a higher chance of miscarriage, but that it shouldn't otherwise affect fertility. Anecdotally, I've seen many women on fertility forums get pregnant with adenomyosis.

On the other hand, this paper suggests that some women with adenomyosis have trouble getting pregnant (this article suggests the same). On the fertility forums, not every woman with adenomyosis gets pregnant. It seems self-evident to me that if my 5x7mm polyp could cause implantation difficulties, then surely my enormous adenomyoma could.

I would hazard a guess that since it affects the structure of the uterus itself, fertility depends on the extent of the adenomyomas/adenomyosis, as well as the unpredictable nature of fertility itself. In other words, some women with adenomyomas can get pregnant naturally, others need medical intervention, others will never get pregnant.

Although the above articles present surgery as a treatment for both pain and infertility, my pelvic pain specialist has warned me that surgery carries with it the risk that my uterus will scar closed, ending my chances at carrying a pregnancy to term. His advice last year was to wait, get pregnant, then have the surgery when I'm done with child bearing.

That was April 2011; it has been a year and obviously, I am not pregnant. Every month, the pain, vomiting, and blood loss continue. Every month I fall into despair. Some months, the pain is better than others, but emotionally, the pain gets harder to deal with.

If I continue to not get pregnant, at some point, I will have to gamble: a chance at restored fertility or infertility. All or nothing.

Death by Google

Diminished Ovarian Reserve
DOR success stories
DOR natural pregnancy
DOR symptoms
improve ovarian reserve
improve FSH
improve amh
adenomyoma infertility
adenomyosis pregnancy
adenomyosis infertility treatment
adenomyosis infertility surgery
adenomyoma surgery pregnancy

To cope with anxiety, some people drink. Others eat. Having been deprived of both, I google.  I google and google and google. I google the same search terms over and over again.

This has helped me to a certain extent. I know more, have found a few blog buddies, and have all kinds of theories about my conditions which I will share with you in future posts.

However, for my anxiety, it does nothing.  Nothing.

Somebody stop me.

Returning to the scene of the crime

I'm not doing so well.  I arrived at my parents' house for a visit Tuesday, and my period started Tuesday evening, which was no surprise, since we missed the egg this month.  Wednesday was my monthly day of hell, which I initially thought was not going to be so bad. Hadn't I been keeping up with my supplements, my fertility yoga, the centering prayer? Wasn't I feeling less stagnant than usual?

But then I called my RE's office to schedule my hysteroscopy, and the nurse told me to avoid all blood-thinning medications: aspirin, NSAIDs, etc. I was already doped up on Aleve, so she told me not to take any more. I thought I was over the risk of vomiting, so I had a light dinner with my parents.

Then the Aleve wore off. I took Tylenol, but, to put it indelicately, it didn't do shit. Stabbing abdominal pain, severe aching in my hips and knees, and vomiting followed, plus very heavy bleeding. I took one of my specially-compounded Valium suppositories, and continued to vomit. I took another. No effect. I finally gave up and took an Indocin suppository, which is an NSAID, but I just couldn't take any more. Ten minutes later, I was asleep.

The pain was excruciating, but worse was the accompanying despair. The deep sense of failure of not being pregnant. The hatred and disgust that my body was doing this to me again.

I missed DH, who couldn't come home with me because of work. My mother was on hand, emptying the vomit bucket at regular intervals and directing me to rinse my mouth with water, but her presence was a mixed blessing. She never knew how to comfort me when I was a child. When I was a teenager, suffering with the same damn cramps (which were longer in duration but less intense) she told me that I would feel better if I moved around.

She now understands how very abnormal this is, and I know it's hard for her when she has to see me like this, but she's no better at comforting me. I learned long ago how to comfort myself, but when I'm in that much pain, I just can't. My despair at failing to conceive finally spilled out, but her response was to remind me that we're "going to adopt anyway" and maybe I should just tell DH that I want a hysterectomy now, and that I should just "think positive."

I told her that that was Gospel of Prosperity bullshit and that I didn't want to hear anymore of it. She got the message.

That was two nights ago, but the effects of the physical and emotional trauma still remain. I thought it would be better to come home for my day of hell than to stay alone at home. But now I wonder if it's the best thing for me to be back at home in the house where I felt so alone growing up experience the same medical condition.

I wonder how long I can keep doing this, going through this monthly hell.

I can't have surgery to remove the adenomyoma, because it might scar my uterus closed. I can't conceive, possibly because of the adenomyoma.

How long before I call it quits forever?

The Master Plan

DH was home this weekend, so we had time to discuss big life things. We made a Master Plan:

Western medicine: When my period starts, I will schedule my hysteroscopy to remove the endometrial polyp. Afterwards, I will try to find a holistic gyn or (even better) holistic fertility specialist with whom I feel comfortable.  My RE sucks.

TTC/Alternative Treatments:  After my hysteroscopy, I will continue all of my mainstream and alternative treatments. We will continue to track ovulation and "actively" TTC until January. If I'm not pregnant by January, I will probably go back to eating and living the way I did before. I'll keep up the Centering Prayer, because it keeps me sane.

Adoption:
        -Finances: We will put $xxxx/month towards paying off debt (DH was unemployed for a long time). As soon as our debt is paid off, we will put that amount into savings for adoption. At this rate, we should have enough saved by January.

       -For now, we have pretty much decided to forego trying to adopt from [country of origin]. The program is closed, the procedure is uncertain. There are too many risks involved.

       -We have decided to pursue domestic adoption of an infant of color. We will investigate agencies and make a choice by January.

       -After the holidays, DH's job will end. In January, we will start getting together paperwork, etc. for domestic adoption.

As for me, I'm swinging between enthusiasm for adopting and despair that I'll never bear a child. All part of the roller-coaster, I suppose.

By Any Means Necessary?

How far would I go to have a child?  The desire to have a child entails the willingness to go through the misery of morning sickness, first trimester fatigue, the excruciating pain of actually giving birth, the risks to my health.  I would be open to having a c-section if necessary for the health and safety of my child.

I've restricted my diet, given up alcohol and caffeine. I spend time every morning organizing supplements. I choke down concoctions of wheat grass and Chinese herbs.

I've endured a saline hysterosonogram. I am having a hysteroscopy in two weeks. If I could have a laproscopy, I would have one.

These are minimal interventions. If pregnancy doesn't result, the recommendation is for a round of injectables, followed by IVF.  The side effects of the "minimally invasive" fertility drugs that my RE has recommended include headaches, mood swings, abdominal tenderness, ovarian cysts. Many women report that the IVF drugs permanently change their bodies. They also carry the risks of hot flashes, cysts, and Ovarian Hyper-Stimulation Syndrome.

The risks of many interventions are also financial. Many women with diminished ovarian reserve cannot get pregnant with their own eggs. They must use the eggs of a donor, often with a price tag of $35,000.  A cheaper alternative is to ask a friend of family member to donate for you. Would I be willing to watch my sister inject stimulants in the hopes that she has eggs to give me?

Some women with adenomyosis cannot carry a pregnancy to term. To bear their own, biological child, they must use a surrogate, another womb on loan. A popular option is to go to India, where a woman will bear your child for far less than the going rate in the US.

Is it all worth it, once we have that child in our arms? Is any intervention, procedure, or transaction okay, as long as we can parent? When do we decide to call it quits?

How far would you go to have a child?

A Big Step

This morning, I called an adoption agency to inquire about adopting from [country of origin].

We are committed to trying to conceive. For now, I am keeping up with all of my Western and alternative therapies. I will have a hysteroscopy at the end of this month. I will continue to track my ovulation. Nevertheless, we realize that without IVF, it may be years before I get pregnant. It may never happen.

So, we are beginning to look into adoption. Our preference is to adopt from [country of origin], but this is fraught with difficulties. First among them is that their international adoption program is currently closed! The second is that I'm not aware of any adoption agencies in the US that work in [country of origin]. Like pregnancy, adopting from [country of origin] may or may not work out for us. We are open to adoption alternatives: domestic or international, but for now, we're trying to follow this path where it may lead us.