The Side Effects They Don’t Talk About…

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The Side Effects They Don’t Talk About

This post has been a couple of years in the making, I have been struggling on how to tell this story and even if I should tell the story.  But what I realized is that I need to tell the story so that I can help other women, so that they do not go through the same pain that I went through.  That there is help and you should not be ashamed like I was for so long.

You Are BRCA 2+

This story actually began over three years ago,when I had a  prophylactic salpingo-oophorectomy.  I know what you are thinking, enough with the medical terminology. But, if you are a woman you should know these two terms, the salpinge –  are your Fallopian tubes and the oophor– are your ovaries.  I have mentioned before in my All about me page that I am BRCA 2+.  The same mutation that Angelian Jolie announced to the world that she has, after she made public her choice to have radical bilateral mastectomy.

I went for the test because, in May of 1995, my mother was diagnosed with stage IV ovarian cancer.  She was only 45 at the time, that is one year older than I am right now, kind of scary.    I remember like it was yesterday.  I had just finished my spring semester at the University of Iowa and when I first saw her I knew something was wrong. Her stomach was so distended and she looked so tired and weak.  She had an emergency hysterectomy and the diagnosis was grim, stage IV ovarian cancer she was given a prognosis of 6 months.  My father said “not my wife, she is a survivor.”  So he took her to the top oncologist in NYC and also went to a naturopathic doctor (taboo back then).  The naturopathic doctor put her on a strict vegan and gluten free diet.  She also did juice and colon cleansing.  All of this was very unheard of back then. My father, for all of his faults, is a smart man and I am proud of all he did to try and save my mother’s life.  Instead of 6 months, she lived 4 years.  She was able to see my graduation from college and my sister’s graduation from high school.

Unfortunately the technology for gene mutation was not around while she was alive.  But we are sure that she had the mutation, as my aunt (her sister) tested positive.  I knew that I had a 50% chance of  having the mutation, and deep down in my gut I knew I had it even before I got the results back. Once I did get the diagnosis of BRCA 2+, we had my second son right away because I knew I wanted to get my ovaries out.  And 3 years after his birth I had my ovaries removed.

I remember having a consultation with the gynecological surgeon, where I specifically asked him what some of his other young patients had experienced when they under went this procedure.  His answer was it’s an easy procedure with very little complications.   He said his wife just had the same procedure and she is doing great.   He never even consulted me on the other side effects like osteoporosis, loss of libido, or the feeling that part of yourself is gone.

How Having the Oophorectomy Changed me

I remember after the procedure, I remember the overt sense of relief I had.  I had just gotten rid of the organ that had killed my mother.  I was elated! But that was soon replaced by anger, sorrow and fear.  I became depressed because I felt like I had lost a part of myself.  I had lost my youth and my vitality.  I now pictured myself as a shriveled up old lady and I felt so disconnected from the world.

Starting Therapy

I started to see a therapist and we started to talk about these issues.  I learned that I was not alone and that this is a common side effect of going through surgical menopause.  I am so glad that I talked to someone about it.  I was placed on hormone therapy and Addyi, and was given other tools to deal with my issues.  I am on the road to recovery now and I am feeling more and more like my old self.

Do I regret having the surgery? Emphatically NO, I know it was the right choice.  I just wished I was counseled on the physical and psychological side effects of the procedure, because for so long I had felt as if I was abnormal and something was wrong with me.

Thinking-Out-Loud

 

 

 

 

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10 thoughts on “The Side Effects They Don’t Talk About…

  1. Wow, I praise God that we live in a time when we do have the gift of medical care… I know that our bodies aren’t perfect here, but I’m looking forward to when they will be. <3 Thank you for vulnerably sharing.

  2. Nicole, I appreciate that you are sharing your story. A friend of mine’s mother died from ovarian cancer, so when she was diagnosed with stage 1 breast cancer three years ago, I was shocked when she opted for a double masectomy over radiation / chemotherapy. I guess when your immediate family dies from this, you do whatever you have to to survive. She is a survivor too!!! I think it is incredibly brave of you to share this with us. Thank you for your candor and honesty.
    Tracey @Tracey’s Getting Fit recently posted…Nutrition Hot Topic: Is it bad?My Profile

  3. Thank you . I would agree 100%. I was not ready @ 38 for the impact on my body , and frankly the impact that would have on my mind. With all of my research, and all of the advice I was given – this one thing was grossly discounted. Surgical menopause was the most difficult part of the process for me, and I had all of the surgeries at once. I’m glad that you’ve found some relief & feel like yourself again. I’m still working on that , and have worked also on accepting my new self. However – I have no doubt that my decision was the right one, and alrhough I might have changed a couple of things about my process ( ie: testing baseline hormone levels in advance , starting hormone therapy sooner etc.) I would not change the timing of the surgeries . I’m lucky to be here, and feel very blessed to have been given the opportunity to prevent the cancer and the treatment that almost all of the women in my family have endured. Thanks again. All the best to you.

  4. I’m so sorry that you had to lose your mother at such a young age. I am hyper aware that much of my self-worth is based on my identity as a woman and can imagine how traumatic such a procedure would be for me as well. Thank you for sharing your story.

    1. Thanks for writing that nice comment. Yes it definitely did have some affect on my identity as a woman. I think by talking about it in the hopes of helping other women makes me feel better 🙂

  5. So many thing here…I am so sorry about your Mom, but how wonderful she had more years than expected. There is never a time when we are ready to say good bye, I have been through it but it is wonderful she was there to see some big milestones in your family. Second, I totally understand the grief. I had already lost one tube and had an ectopic pregnancy, I wasn’t trying to get pregnant and was shocked at the time, however once that door was closed I grieved. Even if we thought we wouldn’t have more children you just lose something….I feel your pain…and the hormone changes make it harder.
    My husband has a gene that we were fortunate to discover. He had thyroid cancer and had no clue. John Hopkins did the testing when his sister had cancer and his was caught. It is crazy we walk around, that stuff taking root inside and often have zero symptoms until it is late stage. Testing is a blessing even though it leads to hard valley. Bless you, you have been through a lot!
    Karen recently posted…Buckle Up!My Profile

    1. Thanks Karen so much reading my article and your comment. I know its kind of scary how we now can determine cancer before they occur. I am glad to hear that your husband was able to treat his thyroid cancer. W

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