The Taboo of Hysterectomy, Part 1: Grieving

(*My laptop, Daisy, died. My husband is not very happy about having to share Jules – his computer – and so I’m not able to be online as often. Hence the long time span between posts.* P.S. Yes, we name our computers.)

I used to count uterus’. I was about a year and half to two years post hysterectomy. I would be out at a store and as women passed me by I would keep a count in my head. Of course, unless she was pregnant there was no way of knowing for sure. Pregnant women counted triple. I was bitter and jealous, and most of all, I was hurt.

There are several things that create a bias from me when it comes to the subject of hysterectomy. I had just turned 24 years old when I had my hysterectomy. I had just given birth (via c-section) to my daughter 3 weeks before. Prior to my pph (post partum hemorrhaging) and emergency hysterectomy I had been in good health (as far as I or my doctor knew). Pph occurs for various reasons and we each had our own unique experience. I am rare even in pph circles because I will never know why or when a small part of my uterus atrophied (this was the cause of my pph because the part of my uterus that had atrophied ripped apart and caused the bleeding). I nearly died and a hysterectomy was performed to save my life.These are all facts that have contributed to how I feel and think about hysterectomy. You can read the fuller version of my pph story here.

I wish there was a book that I could have read on life post hysterectomy and the effect it would have on my life. I wonder how much easier would it have made things if anyone threw a book at me that told me that it’s okay to grieve. Grief is hard. I believe it is something that in our culture is done behind closed doors (hence not having the book thrown at me), and seen as something that is dealt with and done within a small amount of time. I don’t believe I will be fully emotionally or mentally healed until well past my 5 year alive anniversary. I estimate this based on other women who have been through a pph/emergency hysterectomy and my own feelings over the past 3 years. It sounds like a long time, but it really isn’t given the context of the emotions that one has to go through to come to terms with something like this.

There’s a line. An invisible line, but it’s definitely there. Those women who live the grief and those that don’t. Sounds so morbid and down, doesn’t it. There are three very large issues that came with my circumstances: loss of faith, loss of being a woman, and loss of childbearing.

Nearly dying at 24 hit me hard. Just as, I suppose, it would any young person. My faith was challenged more so than ever before. While I am not naive enough to think that God just hands out positive experiences only and that good things can’t happen to good people – Why Me? And not just Why Me?, but why kill off such an important part of me (why not take my finger or ? Why take away such a large part of what makes me a woman? Why take away what gives my children life? Why take away my connection to a world of mothers and sisters and girlfriends? Why take away so much of what I had expected to give to my husband? It was not easy to rebuild my faith and my belief in God, and it is something that I have to work on daily to build. Religion has always been important to me and it is taking time for me to build a new relationship with God.

Losing the ability to carry a baby hit me hard too. I wanted a large family. I still do. Having it happen as I was just beginning to build my family was not something that I was prepared to deal with. It is a part of but separate from dealing with how I defined myself as a woman and how I related to other women.

One of the largest changes in my lifestyle has been my relationship with the women in my life. It was that line again. I was on the other side of a line that I couldn’t explain and had no hope of the women in my life to be able to understand. And this, right in here, is what makes it so taboo. It’s not something that is discussed, the grief and the definition of a woman. I haven’t yet figure out why that is. Is it that we, the women who have been through a hysterectomy, don’t feel safe exposing our feelings to the world? Is it hard for women who haven’t been through a hysterectomy to hear about the hardships and the after-effects?

I always knew that my mom had a difficult time when I was born. I knew that it was serious and that she bled a lot and she couldn’t have children after. My mom had suffered from pph; I found out when I was pregnant with Chloe. Now, just to preface this, her pph was caused by something different from my own. She didn’t have a hysterectomy, but did nearly die. The doctor told my father less than 50% chance of her making it. My mom is, of course, alive and well today. Not many people know what happened to my mom. I barely found out the details about four years ago.

So what is it? What is it that prevents us from expressing the heartbreak that comes along with having had a hysterectomy, especially in the case of pph where it was coupled with a possible loss of life? I’m still trying to figure that out.

One of my big leaps came when I had to realize that grief is not a competition. The first thing that is always said after hearing my story is usually one or more of the following:

at least you survived; at least you don’t have your period; at least you don’t have *enter name of some condition or disease*; at least you have your daughter

I’m going to dissect these a little bit, hoping to not sound too harsh. At least you survived was always hard to question. Because, yes, I’m certainly glad that I lived and didn’t die on that operating table. It implies however, that the pain of living without a uterus is or should be nonexistent. Because I survived, all should be right with the world. I have tried to bury my feelings on what happened to me and have found that it doesn’t help in the long run. In the long run I am much healthier emotionally and mentally if I can deal with it head on. To face that I no longer have a uterus and be able to move on from there. My survival is only a part of the equation and I have to consider the other parts.

At least you don’t have your period. This is my favorite because I used to say it too. I think one of the problems is that I was never too bothered by my period. And now that I can’t bear children it has become a symbol of something that I can’t have, something out of my reach that other women share and take for granted.

At least you don’t *compare other condition or disease*. I can’t compare myself to other people. I just don’t see it as a healthy step. There will always be people that have a worse life than myself, and people that have a better life than myself. It’s in figuring out my feelings and dealing with my own life that has helped in terms of overcoming anything.

At least you have your daughter. This is my least favorite. I think it implies a responsibility for my daughter to fill my happiness from whatever void the pph/hysterectomy left. I never liked the idea that any weight has been placed on my daughter to define my happiness; I have always seen them as two separate entities. My daughter does make me happy, but she is in no way responsible for that – I am responsible for my own happiness as well as my daughter’s happiness. I’m having the same problem with adopting. This idea that our child will fill this void bears a responsibility that I do not want to give my child – all my child needs to do is play and love and learn; I will take care of the rest, including my happiness and any voids that may need filling.

Why don’t we allow each other to grieve? I lost count of how many message boards I have been on that will describe the after-effects of hysterectomy as a positive experience or the best thing that happened to them when someone expresses worry. My point in all of this has always been that it’s okay to grieve. It’s okay to grieve past 6 months or a year. It takes time to rebuild and I know that our society doesn’t always recognize that.

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11 responses to “The Taboo of Hysterectomy, Part 1: Grieving

  1. What an awesome post. Thank you so much for sharing that. It’s an interesting phenomenon – those gut responses we all want to have. The inclination to say “well, at least…” I’ll never forget this amazing talk we were given in medical school about talking to patients about loss and grief, and how important it is to NEVER give in to the temptation to make it less painful for us to hear by saying or thinking “at least…”
    I think it goes hand in hand with our culture to supress grief. As a society, we don’t like to deal with it. It’s not pretty, it’s not easy, and it’s not comfortable. But it’s so important. And you’re so absolutely right, saying things like that is really just a way for us to make ourselves feel less sad and try to make others feel less pain. But in reality, they undermine the very crucial grief that we must experience and allow others to when we deal with any loss.
    Anyway, thank you so much for sharing your story. I’m going to read Part II right now.

  2. I feel so blessed to have found this. I am 6 years post hysterectomy, I had it when I was 28 and I just realized my problem. The Atleast people…. I have not given myself a chance to grieve and now it is starting to make sense.

    Thank you,
    Sharon

  3. I recently found out that I need to have a hysterectomy. I have been grieving for years, as I knew it would come to this. I have no children, so it’s even more painful. I feel anger, I feel hate, I feel betrayed and I feel no hope and I no longer have faith. I also count uterus’. I have for a long long time. It’s not those that hurt so much it’s those little pink and blue bundles that feel like i have a knife in my heart.

  4. I know that your comments are from 2007, but thanks so much for posting. I had a hyst about 2 years ago, at a young age, and before my husband and I could give birth to children. It’s been extremely difficult. I also found that people did not allow me to grieve, and at least my pain and suffering are gone. The point is, why do I have to face it at all? Why did I have to give up a uterus and all that it represents to have a healthy physical life? Most people aren’t forced into that decision. And, I know what you mean by websites touting hysts as wonderful, and that the only thing you may experience is hormonal issues. I think most people have heard of hysterectomy accounts from women who were much older, so it was a very qualitatively different experience than if you were younger. Nonetheless, older women also report grief from this. I am about to cut myself off from facebook b/c everyone is posting pics of their newborns or ultrasounds……it’s jsut too much. Thanks for your post.

  5. I REALLY want to say “thanks” for the posting of these comments. Although these comments were made years ago, it doesn’t negate the fact that there are other women who are going through these SAME feelings NOW.

    To give you a little background, I’m NOW 43 years ago, and in January, 2009, I went to the E.R. with SEVERE stomach pains and didn’t know what was wrong – had NO idea: one day I was fine, the next minute I could hardly move, walk etc. After being in the E.R. for about 12 hours, a doctor came in a made the sudden announcement that I would have to be admitted and operated on. When I asked what for, he said they would have to do a hysterectomy. HYSTERECTOMY????? What in the H***? Now this SHOULDN’T have been a big deal for me because after almost losing my life 11 years earlier while having my THIRD child, I had my tubes tied 2 years later. However, in 2008 I began to have this strange desire to have another baby. I couldn’t explain it to anyone and couldn’t quite figure out what was going on myself!!

    Nonetheless, I like the other lady was told, “Well thank God you have your 3 girls” (who were then 23, 18 and 10). Well unfortunately I felt NO consolation of this fact. I had others who said “Well thank God you’re alive. You almost died”. Yes, they were right, the reason why I ended up having a full hysterectomy was because my bi-lateral cysts had abscessed and the poisons and toxins were leaking inside of me and were not only killing me but were burning away my reproductive organs. The doctor said I was approximately 48 hours short of dying. Had I gone to the ER any later they would have been burying me INSTEAD of operating, so YES, I WAS glad to be alive, but for some reason this didn’t make me feel much better either.

    It’s been a year since the surgery in a couple of weeks and I can’t explain the pain, the ache, the longing, the craving I have to have another baby. Sometimes I want a baby so bad my hands and arms ache to hold and hug a baby. I feel like my heart is about to burst through my body I cry so hard sometimes. How do you tell this to ANYONE who sees you with children who are in college and are about to leave home and all you can think of is having and wanting ANOTHER baby? It’s gotten so bad I can’t even enjoy all my friends who are having children and I feel HORRIBLE!! I can’t watch tv and see someone having a baby or little children. It’s about to drive me mad. I can’t stop crying, I can’t stop wanting, I can’t stop thinking…

    Having been ordained an Evangelist about a month or ago, I KNOW the power of prayer and what it is to believe and live for God, but I can’t explain how or why this is such a grueling, grieving experience for me and I thought I was alone until I read this website. All I know is I WANT A BABY and not my fiancé, my friends or family would or could understand because they’re the ones with the comments listed above. I DON’T want to adopt, I DON’T want to be a foster mom, I just want to have my own baby in my stomach, feel the movements, the growth and birth my own child!!

    Thank you again for sharing your feelings as this has let me know that I’m not alone. I pray for ALL of our healing because as having a full hysterectomy doesn’t allow you to have any more children – only GOD can help us now!! Be blessed

  6. I am dealing with my feelings now , 9 yrs later , having been’ strong’ for way too long. I had a Hysterectomy for a Fibroid after urgent blood transfusions and lots of medication failed to stop me bleeding. The surgery was 20 mnths after my husband left me for another woman.

    I am fortunate to have 2 children .These feelings of grief are intense.I feel unfeminine ,defective in some way : unlike other women.I envy other women who can have children , who have periods .

    It helps to see your website.To know I am normal to feel this way.What a strange world we live in where we are discouraged from grieving- for so many losses .Is this why Depression is so prevalent in our Society?

  7. Hi, i was 20 wen i had my hysterectomy. A c section with massive pph. I was given a gas mask and put to sleep. Had to have another surgery the day after to control another bleed. Went into coma, woke up after a week. Wasnt told of hysterectomy until after i woke up. I didnt even know what a hysterectomy was. Stil coming to terms with it. Was over 2 yrs ago. I dont think my husband understands what i feel like. I feel so alone in this.

  8. Help!! As nice as the post was I am wondering what to do… I can’t find any websites or support groups for people who didn’t have children and can’t have children then have no chance of having children unless you adopt or marry into it blah blah blah. What kind of trick is this? I got divorced because I wanted my husband to move on and have a family without the grief of everything being my fault. There is such a void and I am trying to figure out how to deal without being completely negative against everything. The holidays, other peoples children, boyfriends with kids… Etc. Please help Brizzi

  9. What an encouraging and spot-on post. I’m only barely broaching the tip of this iceberg, 12 days post-pph-and-hysterectomy. I’m 29, in perfect health, had a perfect pregnancy, a perfect son, and no uterus in the end. The “at least” people…well, I haven’t met any yet (sure I will), but I AM one in my own mind still. At least I have my son; at least I didn’t die; at least…at least…at least. I miss my periods already. I wish I was still spotting. I miss those debilitating cramps I had in high school and college. I miss that unspoken camaraderie of “being a woman.” It’s all a loss to grieve. Thanks for giving me the words to put to it, and some help in how to do it as time passes.

  10. Thank you for sharing this. I was starting to seriously think something was wrong with me. All the message boards made it sound like I should’ve a super hero and happy about my hysterectomy. I’m not happy and the only way to describe how I’m feeling is grief. I don’t feel broken now

  11. Rachael Hammersley

    I am 24 and just found out I need a hysterectomy. I have one daughter who I love dearly but I always wanted more children. I’ve been suffering from endometriosis since i was 10 when I started my period. Through years of pain and countless treatments, this is the last option. I cannot continue to go on the way I am. I’m nauseous everyday to the point where I have lost 40 pounds in less than a year and I am literally withering away. The pain in my legs back and hips have become so unbearable is difficult walk. Going to the grocery store whips me out and I have to take a nap. I am at my whits end. My entire family is overly concerned about my condition and all fully support my decision to have a hysterectomy. However, I don’t feel like I have a decision. My endometriosis took away my decision. Its either be in pain everyday and hope that one day you might actually be able to conceive and carry. (However unlikey with my current condition) or I can get this surgery I’ve known I would have at some point since I was 12 and give up my chance of ever having another child. I feel so out of control with my own body and my own life. This is not the life I wanted.

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