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Hysterectomy?

Hi to all!  In April of this year, pelvic pain sent me to my GYN who subsequently ordered an ultrasound. Pain caused by a complex cyst on right ovary. Waited for six weeks before repeating ultrasound to see if there were any changes-only change was less fluid, more solid so I was referred to a GYN/ONC who is recommending removal of both ovaries, primarily due to breast cancer history with estrogen receptors.   Uterus and tubes also recommended for removal.  When I had breast cancer, I didn't hesitate having mastectomy. Even though it may be the best thing, i have reservations about this hysterectomy/ovaries removed.  I had chemo, on Tamoxifen, but am very concerned about the additional changes this may cause my body and mind to have.....I am constantly reading and know I may need to adjust quite a bit, and will do what's needed, but I am so worried about the quality of my life as well; sex, mentally, skin and hair, bones. I'm married, 45 years old, 4 children.  I suppose I'm venting, because Im pretty sure I am going to do as recommended, but it is a bit overwhelming.

Best wishes to you all!
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Avatar universal
Have you considered only allowing organ removal if the frozen section shows cancer? If this is your desire, you will want to revise the surgical consent form accordingly and make sure your surgeon signs off on your revisions. Make copies for yourself.

The uterus and ovaries are SO important for lifelong health and well-being. The uterus and its ligaments preserve our pelvic and spinal integrity. And the ovaries produce hormones into our 80's if we are intact. Medical studies show many increased health risks and reduced quality of life associated with ovary removal or post-hysterectomy ovarian failure.

Did you know that hysterectomy and ovary removal are grossly overused and that.76% of them do not meet ACOG criteria? And the da Vinci robot is now being heavily marketed as providing a quick recovery yet the long-term negative effects occur regardless of the method of surgery.

I also had a complex ovarian cyst, 9cm in size. My gynecologist of 20 years rushed me into surgery. Even though the frozen section done while I was under anesthesia was benign (non-cancerous), he proceeded to remove the rest of my organs (uterus, tubes, ovaries). I have been paying the price ever since (8 years). I have aged UNBELIEVABLY fast. I have lost most of my hair and my skin has aged horribly (loss of subcutaneous fat and collagen causing sagging/hanging skin, prominent veins, and loss of muscle mass). This all happened within months of surgery. And the physical, mental, emotional, sexual effects are a whole other laundry list.

I wish I would have done things very differently. First and foremost, I wish I had listened to my intuition and not let his scare tactics take over. I wish I had been more assertive and stood up and walked out of his office when I questioned some of his statements. I wish I had realized that he was "in bed" with the oncologist to whom he sent me for consultation and that this was likely just another marketing ploy / cancer scare tactic. I wish I had trusted my observations of women who had hysterectomies (how they acted and looked) instead of dismissing them as "they are overweight, don't exercise, or just have blah personalities, or maybe hair loss is just as common with natural menopause" etc.

And the most disturbing is that some hysterectomized women who told me I would be fine or women who sort of disappeared when they discovered I was going in for surgery were forthcoming with their problems after it was too late.  

Hormone "replacement" therapy is not a true replacement. Nothing can adequately replace what the body produces on its own on an "as needed" basis. Many doctors will tell you all you have to do is take HRT and everything will be fine. HRT can improve some of the symptoms but I would much rather have my organs back. And with your breast cancer history, would your doctor even prescribe HRT?

I think I have said everything based on my experience and research. I hope this helps! And I hope whatever treatment you have goes well!
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667078 tn?1316000935
You can adjust. My husband and I have date nights.

Alex
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Avatar universal
You are the epitome of the meaning of survivor! Shame on your 1st GYN/ONC. Thanks for responding, Alex. I will look for that book. I know a change is coming. Anxiety is eating me up, I've been trying to deal with that lately. Not just this issue, it is creeping into other areas as well so I've been trying to eat better though im not eating much becaue of the nausea, and breathing exercises. Admittedly I ignored this pain for quite a while thinking it would go away or dismissing it because i'd been working out so hard and I know better. Feeling a little guilty about how just the surgery itself is going to affect my family and even work.  Even though i constantly tell myself it will be ok.

Thanks for sharing your experience.

Hydi

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Helpful - 0
667078 tn?1316000935
I won't lie it took away my sexuality all together. I am happily married so I still have sex but have no desire whatever. I also had to get dilators to open up my vagina because of the pain. I had no choice I had Cancer on both ovaries and a lot of other places.

I am BRCA 1 Positive and my GYN/Oncologist wanted me to have a double mastectomey. After finding out what that was about I refused. He yelled at me and told me I was not in reality. I went to a hereditary breast specialist. She thought since I have stage 4 Ovarian Cancer it was nuts to have the mastectomey when I don;t have breast cancer.

Bottom line you can always get a second opinion. Or a third. My first GYN/Oncologist was a true jerk he almost let me die, my second saved my life and I will always be grateful, but I now have a woman and am way happier. I will think about breast surgery when I get breast cancer,

These guys go by statistics, I have Multiple Sclerosis, Ovarian Cancer, and BRCA1. I have learned people are not statistics and statistics are not all that accurate. The statistics for MS says I should be in a wheelchair. The statistics for Clear Cell Ovarian have me dead. The BRCA ! says I have a 87% chance of breast Cancer. My GYN/Oncologist told me in my case it is %100. How does he know? My breast doctor says as long as you are on chemo you do not have to worry about breast cancer. I will be on chemo the rest of my life. I do my breast screening. Ultrasound and CA 125 blood tests are all you can do for Ovarian. PAPS do no good for detecting Ovarian. They found mine 2 years after I started throwing up all the time. I was lucky I even had symptoms most women do not.

Worst comes to worst cuddling is not so bad. My sweats were really bad at first but they are better. You just have to make an informed decision and do what is best for you.

There is a good book called "Positive Results" It is for BRCA but it is good for anyone exploring options about Breast or Ovarian Cancer. And preemptive surgeries. It lays out all the surgeries and effects.

Alex


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