Ovarian Cancer Community

I'm sorry for your mom's diagnosis and that you're faced with this tough decision. The uterus and ovaries work together as a system which has functions beyond reproduction and the removal of any part of this system can cause permanent problems.

A number of medical studies show the harmful effects of ovary removal. Do a web search for "pubmed oophorectomy health effects." An excerpt from the first search result (study) states "Estrogen deficiency resulting from pre- and post-menopausal oophorectomies has been associated with higher risks of coronary heart disease, stroke, hip fracture, Parkinsonism, dementia, cognitive impairment, depression and anxiety in many studies. While ovarian cancer accounts for 14,800 deaths per year in the USA, coronary heart disease accounts for 350,000 deaths per year. In addition, 100,000 cases of dementia may be attributable annually to prior bilateral oophorectomy. At present, observational studies suggest that bilateral oophorectomy may do more harm than good."

I had a hysterectomy with ovary removal in my late 40's for a benign (non-cancerous) condition and it's had a devastating effect on every aspect of my life. I changed overnight from looking very young for my age to looking older than my age. My shape has changed too. And I fell quickly into a suicidal depression along with all the typical severe menopausal type symptoms. Hormones have helped quite a bit but I'm not even close to my former intact self. And, yes, my sex life has suffered horribly - no desire whatsoever and response is disappointing when it even happens. Orgasms are never as intense as they used to be since my uterus is gone.

My doctor did not inform me of any of the adverse effects of organ removal. Glad you posted and I hope my information has helped!

Thank you.

I have read so many conflicting things. One says sex is better, the other says exactly as you said.

I'm young, I workout, I have a nice figure, I eat organically(besides eating out occasionally), I do all the things I'm "supposed" to do. Because of that my husband feels my chances will be lower than my family. But Generation 1 had ovarian cancer, Generations 2& 3 had breast cancer, Generation 4 has ovarian cancer...I'm Generation 5.
So, geez. Do I get the testing & move forward or wait & see? My GYN was ADMANT I do something, downright passionate about women getting genetic testing & removing the risk.....but he doesn't have to live with the after effects.

Do you do biodentical hormones? I ask because I wonder if there's a difference for women between that & synthetic. As to how one feels.
My GYN also recommended a prophylactic mastectomy if the testing came back positive.

I don't HATE the idea of regular moods & perky boobs.
I DO hate the idea of looking masculine, overweight, loss of sex drive and menopause.

I'll comment on a few things you said but first I want to mention that it's possible to have OC cells elsewhere in the pelvis so removing the ovaries doesn't totally eliminate the risk. I know someone who had OC cells in her colon but NOT in her ovaries. Also, BRCA mutations increase risk for other types of cancer besides breast and ovarian. Here's some info:
http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

I don't know the insurance ramifications of any of this. I have a friend who had a hysterectomy and when she applied for insurance, hysterectomy was listed as a pre-existing condition so her premiums are higher. This may be moot with the Affordable Healthcare Act.

To address your comments/questions:
"One says sex is better, the other says exactly as you said."
Not sure how sex could be better without your sex organs. Bear in mind that severing of the nerves that sit at the base of the uterus as well as severing of blood vessels reduces sensation. And then the hormonal changes further impact sexual function. I doubt a man's sex life would be better (or even the same) if he had his prostate and/or testicles removed. I recall a guy mentioning that he had his prostate removed and now his sex life is 1% of what it had been but his doctor had told him it wouldn't be affected. I highly doubt your gynecologist would have his sex organs removed if he had an increased risk of testicular and/or prostate cancer. Women have their organs removed at much higher rates than men. But even ACOG says that 76% of hysterectomies are unwarranted.

"I'm young, I workout, I have a nice figure, I eat organically.... Because of that my husband feels my chances will be lower than my family."
Yes, lifestyle can lower your risk. If you choose to forego testing and/or surgery, you'd want to be closely monitored. This is what an friend of mine has done for 10 years as recommended by her gynecologist who said ovary removal causes too many health and quality of life problems.

Would you keep your uterus? It seems "standard" to remove it if the ovaries are removed. Keep in mind though that the uterus keeps the bladder and bowels from falling (subsequent prolapse could require more surgery down the road along with mesh complications). The uterine ligaments are also your pelvis' support structures. Your figure will change once those are severed - think gravity.

"So, geez. Do I get the testing & move forward or wait & see? My GYN was ADMANT I do something, downright passionate about women getting genetic testing & removing the risk.....but he doesn't have to live with the after effects."
I obviously can't tell you what to do nor would I want to. Of course, even if you're BRCA you can choose to monitor versus remove. Just be sure you're 100% comfortable with removing parts if that's what you decide because there's obviously no turning back. You may even want to spend a bit of time on Hystersisters and see what women are dealing with after hysterectomy. The forums that will give you a long-term view are the "No Ovaries - Yes HRT" and "No Ovaries - No HRT." Some of those women had their surgeries many years ago and are still struggling with or without HRT.
You're exactly right - Your gynecologist doesn't have to live with the adverse effects but you do. Keep in mind that gynecology is a surgical specialty and surgeons make their living by doing surgeries.

"Do you do biodentical hormones? I ask because I wonder if there's a difference for women between that & synthetic."
HRT is a very individual thing. It's very much trial and error and it's not like our bodies' own hormones. Are you sure they'll let you take HRT with your increased cancer risk? I've seen women denied HRT if they have increased cancer risk or had early stage cancer. Just another thing to consider.

"I don't HATE the idea of regular moods & perky boobs."
My hysterectomy triggered suicidal depression and anxiety - never had either one before. PMS would be gone but the alternative may be worse.