The Girl With The Bulky Uterus: My Journey Through Infertility

It has taken me almost 3 months to write this post.

It was going to be the second post on my blog… The beginning of the journey that brought me here.  But as I sat down to write, I found myself avoiding the feelings of those years, feeling overwhelmed, amending the old feelings with how I feel today, which is very different from how I felt then. Hindsight is 20/20, and I am so thankful.  The physical and emotional pain I experienced have been replaced with joy and gratitude for the life I have now, but at the time, I felt very alone in my struggle.

So I am writing this in hopes that other women know that there are people who can relate.  That you know that you are not alone.

Infertility is an intimate struggle that many women experience, but the resources available for support are not easy to find.  To a degree, it’s still a taboo topic, attached to shame, grief, feeling like ‘less of a woman’ and so much more.  When I share my story with women who have experienced infertility in its various forms, I see a light in their eyes and hear hope in their voices that someone else understands.  I understand.

By definition, infertile women have bodies that are inadequate for making babies.  Conversations with fertile women about body changes from pregnancy, or the breastfeeding journey or whatever physical aspect becoming a biological mother may involve can feel incredibly exclusive.  Infertility affects our psyche and all aspects of our relationships; friends may not understand, sex drive is impacted, & the seemingly dashed dream of being a mother can be heart and soul-crushing.

I’ve always known I wanted to be a mother.  It was a desire so deep, I could feel the love long before I was ready to embark on the journey of motherhood.

So when my struggle with infertility happened in my mid-30s, it hit me like an avalanche. I’m a pot-of-gold-at-the-end-of-the-rainbow kind of girl and a believer in my own dreams, and when the dream of becoming a mother looked like it wasn’t going to happen for my wife and me, I can tell you that it felt like I couldn’t take a deep breath for a very long time.  Heck, I forgot to breathe on a regular basis.

As I look back on how it unfolded, I do have to admit that there were always signs of trouble ahead.

I began cramping before I even had my period!  Once, when I was 10, I doubled over in pain, my parents took me to the emergency room because they thought that I had appendicitis.  Nope.  I had cramps, though my period was a year away.  The signs were there. By my late 20s, I was seeing the OBGYN regularly to try to manage the pain and heavy bleeding that came with my monthly visitor.  I had tests, ultrasounds, CAT Scans, biopsies, cauterizations… I tried several different types of birth control & followed every instruction I was given by the medical professionals while this happened for apparently no reason other than my tough luck. I even left my post in the Fitness Protection Program and took up running because I was told that exercise was the best thing for reproductive health.  It did not help.  I wasn’t getting better and I didn’t know what was wrong.  I was beyond frustrated!

By the time I was in my 30s, with no diagnosis, I was distraught. The only solution most doctors could come up with was birth control pills, which I was avidly against because of  evidence that has shown that the change in hormone levels can contribute to breast cancer, which was prevalent among my maternal female relatives.

I was  caught up in the algorithm of our terrible United Sates HMO medical insurance business.  I never had the same doctor twice, my issues were not properly assessed and test results were not explained in full.  I finally met a doctor who heard my frustration, and I got a diagnosis, along with options and a drawing of what was happening to my body.  She told me that my diagnosis had been discovered a year earlier.  No one had bothered to tell me that.

I had a condition called Adenomyosis.  IT HAD A NAME!!! HALLELUJAH!

Adenomyosis is a condition in which the inner lining of the uterus (the endometrium) breaks through the muscle wall of the uterus (the myometrium).  Adenomyosis can cause menstrual cramps, lower abdominal pressure, and bloating before menstrual periods and can result in heavy periods. [3, 2017 WebMD ]

Now that I knew what it was called, I needed to understand what it all meant. This process was a nightmare. I was bleeding out, in constant pain, and taking and changing medications like it was going out of style.  I was hurting, physically and emotionally, and it felt like both were beyond repair.

I no longer trusted doctors because most doctors that I dealt with didn’t even know what my condition was. I used my own research to explain it to them.  The head of the OBGYN department in my insurance network told me to “either take birth control or have a radical hysterectomy.”  I was 31.  That would have put me into menopause.  Another doctor wrote in my chart that I had fibroids because he didn’t know what adenomyosis was. It was “just easier to put that down”.  In the end, I had those too… But not yet.

Even though we hoped to get pregnant, my wife and I had also always felt that adoption as an option for us.  Now, the decision was made. 

We began to take classes and filled out the large amount of necessary paperwork to adopt through the foster care system.  But, the classes told of the pitfalls of the system and we were totally freaked out.  We learned of risks like losing a child that we loved because the system is set up for biological parent/child reunification.  We could have a child in our home for years and then they may be taken from us.  We wanted a child to come to us and never leave.  The idea of losing a child in that way felt too heart-breaking for us.

We decided to try artificial insemination.  Since I was the younger, healthier spouse (we thought), we decided that I would be the one to get pregnant.  It cost hundreds of dollars just to meet with the fertility doctor for the first time, and the first vaginal ultrasound revealed that my uterus had enlarged and was pushing my left fallopian tube closed.  I went to another specialist who tried to unblock it, but the process was unsuccessful.  However, I was told that I could still get pregnant in the right tube.

A few thousand dollars into the process, I got my period and it didn’t stop.  After 9 months, I had symptoms that took me to the ER to reveal that I was bleeding to the point that my hemoglobin (iron) levels were dangerously low and I needed a blood transfusion.  A hysterectomy (allowing me to keep my ovaries) was now vital to end the suffering.  At the time of surgery, my period had been going on for ten and a half months.  I woke up pain-free, and relieved beyond measure.  I was 37.

We went back to the foster-to-adopt process shortly after, with a better attitude and some extra support, and our daughter came home to us a year after my surgery. 

She’s my wish-come-true.  I am honored to have come to be her mother through adoption.  I do not feel deprived.  It feels like she is of my body, even though another totally amazing woman carried her.

What I would say if you’re struggling with fertility issues is this:  Look at all your options.  Be your strongest advocate.  Make the medical practitioners that you encounter look you in the eyes, tell you all possible options and make them listen to you.  This is your body, your future, your life. But most of all, don’t lose hope that you can be the parent you want to become.

Though there are people who believe you need to carry, birth and breastfeed a child to be a complete parent, that is a ridiculous notion.  It simply isn’t true.  There are lots of ways to become a parent.  When my daughter calls out “Mommy!”, she’s talking to me.  See?  Pot of gold.  Biggest and best ever.