It has been almost one year since I have had a Total Hysterectomy
with a Bilateral Salpingectomy, and almost as long that I have looked for
books, websites, blogs, anything that talked about the many levels of grief I was
experiencing. Sadly, I could only find a couple posts from women, who like me,
were looking for solace and understanding after having a Hysterectomy. On the other
hand, books and support groups around having miscarried or having genetic infertility
came up in all of my google searches. In many ways they were helpful as I
related to the deep loneliness and isolation of grieving something I never had.
What was missing however, was the discussion of the loneliness and isolation
about what I actually lost. So I decided to write this letter to the women who,
like me, are empty on the inside.
I found out in the middle of October 2014 after a regular
doctor appointment that there were issues with my labs and that I would need to
undergo a couple more tests to see if what they had noticed was something that
could be ignored, or something that would need to be addressed at once. I
remember sitting at the edge of the bed in my doctor’s office thinking “I can’t
believe what I am hearing.” and leaving the office in a little bit of shock. Walking
home I started to think of the person I had always thought I would be, a mom
with a family. I thought of my little sister and how when she was born I used
to pretend that she was mine. I thought of the little girl that looked so much
like me who I had always imagined I would someday have.
I was angry at myself. Angry that I didn’t have a baby
sooner. Angry about the decision I had made almost one year prior to put off
trying to get pregnant with my then fiancé, so that we could focus on planning
our wedding. Memories began to flood my consciousness. Memories of my first
marriage, my years single and my current life. I remembered the conversation I
had with the designer of my wedding dress, letting her know that I would no
longer need a two-piece dress as we were going to wait until after the wedding
to try to get pregnant again. The decision to move to a neighborhood with a
larger place so we would have a room for our baby one day, and the many months
after that decision when I would be late for my period and run to the drugstore
to get a pregnancy test secretly hoping that we would have a baby soon. I was
heartbroken, and angry. So angry.
What made matters worse was after we found out that a Hysterectomy was imminent and I started to talk about my grief and fears, many
people didn’t give me space to grieve. Friends would listen to me and then tell
me that I could someday adopt, to get a dog, or that I was lucky to have the
surgery. I heard everything from “it’s god’s will” to a text message from a
girl that told me to “get off my pity pot.” I was hurt and confused by how
others reacted and slowly my grief became silent. I felt ashamed by it and
stopped asking for help. My anger turned inward and my grief slowly turned into
depression.
I thought this was going to be the hardest part of the Hysterectomy. And it has proven to have been very hard. There are days when it
seems everywhere I look there are families who are happy and complete, days when
my newsfeed in Facebook and Instagram is littered with newborn babies and their
glowing moms, or days when I see a dad with his little girl and I think, “I
have robbed my husband of this.” One time we went to visit my husband’s family
in Chicago and my husband was hugging his little niece. Someone mentioned how
she looked so much like him that she could be his child. I felt like my heart
ripped apart a little bit. Looking at the two of them together I was aware that
no matter how much love we shared for one another, there was one thing we would
never share and that is a child who is part him and part me. I felt like I
failed him.
And though the loss of this dream is painful and some days
unbearable. What I hadn’t imagined, was the loss and pain I was soon to experience
as a women who would forever be different. I would be empty on the inside with
new challenges, physically, metabolically and emotionally. I had not only lost
the dream of motherhood, I had lost my womanhood.
The surgery took place January 29, 2015. According to my
doctors and nurses, everything went well. The incision was clean and the organs and fibroids were removed. My doctor seemed pleased with the closing of my new vagina as my
cervix was also removed and I no longer had an opening to the inside of my body. At
the hospital, the nurses put me in a room with two beds so that my husband could
stay with me. My room was filled with beautiful flowers and my family and a few
friends visited me. I was in a great deal of physical pain and would cry with
the night nurse, but all-in-all I felt well taken care of. The nurses there were so kind as they saw
others like me and seemed to understand the grief and loss I was experiencing.
When I left the hospital and came home I was surprised by
the physical pain and slow recovery. I had always been an active person and now
I could barely shuffle back and forth to the bathroom. I would set the timer on
the oven for 15 minutes as I took slow laps around our home. Living up a flight
of steep stairs I was unable to go down to the street and step out into the
fresh air for weeks. I felt like a prisoner and craved companionship and the
feeling of sun on my shoulders. My husband did everything he could to take care
of me. He made sure I took my medication on time, he organized visits from my
friends and he just sat by me as we were unable to sleep in the same bed for a
while.
As I started to heal I noticed that things were different.
My 8 weeks of being immobile and the changes to my metabolism as a result of
the surgery had led to a pretty significant weight gain, especially around my
mid-section. I looked like I had either just given birth or was in early
pregnancy. This only added insult to injury as I walked around holding my
swollen belly and imagining the hollow space inside where my womb had once
been. As I started to get ready to go back to work it was apparent that my old
clothes would no longer fit, so I had to buy maternity jeans so that I could
look professional while managing the swelling inside of my belly.
I also started to experience pain I had not had before,
incontinence and a lack of sexual drive. It was unclear if what I was experiencing
was temporary or a sign of what my future would hold. As the weeks moved on the
pain became worse and worse and I began to wonder if the decision to have a Hysterectomy was the right decision after all. Even though I made the decision
because of risk to my life, I wondered if dying might have been the better road
to take. The increasing pain started to affect the physical intimacy in my new
marriage and made me question if I was causing my husband too much grief. I
began to feel even more undesirable as a result of my weight gain and
depression. It felt like life had lost color and everything around me was
shaded by colors of grey. This is when I started to seek medical attention for
my symptoms and when my many visits to labs and specialists began. I imagined
my arms looked like that of an intravenous user from all the needles that were
used to draw blood. I was getting diagnosis and advice from doctors all around
me and my symptoms were not changing. I began to seek alternate help and
started to work with a physical therapist who specializes in Pelvic Floor muscle
rehabilitation. She thought my body was reacting to the trauma of surgery as
well as the traumas of D&C to remove fibroids and multiple LEEP procedures
that I had undergone in the years past. The physical trauma was effecting my
mental state and soon I found myself making an appointment with a doctor who
specialized in a type of therapy to help patients who were suffering from prior
trauma. Essentially I started to address the loss of the life and body I once had.
I’m still not sure what I grieve more, the loss of a dream,
or the changes in my body. I sometimes get lost in the thought that my body is
empty. Where there was an organ that used to support my bladder and bowels,
nothing exists. I’m told my other organs have taken up their space and the
symptoms I have are because of this. Although I got to keep my ovaries, the
removal of my Fallopian tubes seems to have affected the blood supply and as a
result I am entering menopause at a much faster rate than I would have otherwise.
This is also affecting not only my weight gain, but my body’s ability to metabolize
at the rate it used to. I am reminded that it has been less than a year since my Hysterectomy and that I am still in the midst of the recovery period. I try to remind myself of this whenever I began to feel that there is no end in sight to the sorrow I feel. Some days it is easier to hold on to the idea that one day things will feel better. I certainly hope that is what my future holds. Until then, I hope that I can find acceptance of my new body and my new life. More importantly, in the time between now and then, I hope that my experience will allow someone in a similar situation to grieve fully without shame or self judgement because they will know that I understand what it means for them to be empty on the inside.
July 13, 2013: First day of Prenatal Vitamins
December 7, 2013: Two-piece pattern of my original design for a wedding dress
