My mother had PCOS and later was diagnosed with Ovarian Cancer at 34 she had a full hysteroctomy along with extensive radiation. I've been diagnosed with PCOS and had the genetic testing for Ovarian Cancer and have come out in the "high risk" range. The birth control pill has not helped my PCOS symptoms and my dr. has recommended an ovarectomy (removal of both of my ovaries) I have 2 beautiful daughters and am not planning on having more children. I am very worried about the side effects of the surgery. Will they be worse than my side effects from the PCOS? Constant Acne, moodiness, terrible cramping and a period once a year. Any advice is appreciated!
I would suggest that you read up on all of the info about menapause, as that is exactly how your body is going to react. You will need to decide if you want to go onto Hormone Replacement Therapy(HRT) or not etc. Lots of things to think about.
If it was me, I would consider harvesting a few eggs and storing them JUST in case you decide at some point that you would like another child. even though you don't want another one right now. And then have the ovaries removed. Personally I would rather deal with the menapause issues then cancer.
It's a very hard decision! Keep us posted about how you proceed!! (((HUGS)))
__________________ Shana Single, with no prospects! And that's ok To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts.
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Thank you for the advice. Yes you are right that's a really good idea to harvest some eggs. My surgery is scheduled for June 20th & I will indeed keep you posted. Thanks for caring! Menopause affects people so differently (some get few symptoms while others have all of them & then some - I hope I catch a break here! ) so I guess I will just have to wait & see.
If you want to harvest eggs you will need to call your doctor ASAP and get it set up, especially if you are scheduled for surgery in June..that isn't very far away!! It usually takes 6-8 weeks to harvest I believe...
Looking forward to seeing your update posts!! (((HUGS)))
__________________ Shana Single, with no prospects! And that's ok To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts.
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My mother had PCOS and later was diagnosed with Ovarian Cancer at 34 she had a full hysteroctomy along with extensive radiation. I've been diagnosed with PCOS and had the genetic testing for Ovarian Cancer and have come out in the "high risk" range. The birth control pill has not helped my PCOS symptoms and my dr. has recommended an ovarectomy (removal of both of my ovaries) I have 2 beautiful daughters and am not planning on having more children. I am very worried about the side effects of the surgery. Will they be worse than my side effects from the PCOS? Constant Acne, moodiness, terrible cramping and a period once a year. Any advice is appreciated!
I would highly consider an ovarian wedge resection vs the oophorectomy (removal of your ovaries). Dr. Thomas Hilgers is a world specialist on PCOS and more specifically the ovarian wedge resection (which I had done 04/09/07). People with PCOS travel from all over the world to see him at his clinic in Nebraska. Check out his stuff at Pope Paul VI institute website and NaPro Technology. Pretty cool stuff that has been based on years and years of research. Best Wishes!
Hi!! I am glad I had mine taken out. I am still working on getting my estrogen right but my moods are better!! Not perfect but better!! Let me know if you have any questions!! I would do it again if I had too!
Hugs Patti
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PCOS for 21 years I am 35
Hirutism
Hypoglycemia
(Extreme Depression with suicidal ideation) Now lessened after my hysterectomy
Lived a life going to doctors that had no understanding of PCOS--which was mistakably called bi-polar, OCD, depression, hypomanic and more....
1 precious little girl
I would do this surgery in a heart-beat if I were in your shoes.
Blessings to you as you try to reach the best decision for yourself.
__________________ Married, mother of one son - 11 years old. I'm a SAHM, (former homeschooler). I have PCOS, hypothyroid, Type II Diabetes, and Sjogren's Disease as well. I have a cottage business making handmade soaps, lotions, etc.
"Our deepest fear is not that we are inadequate.
Our deepest fear is that we are powerful beyond measure.
It is our light, not our darkness that most frightens us."
~ Marianne Williamson
What a difficult decision to make. I don't have experience in this area, just want to say keep getting as much info and support as you can, as long as you are comfortable with your decision and your dr's recommendations, i'm sure you will get through whatever hurdles may come. Good luck to you!
Thanks to Patti, Jen, Bec & Jackie & all others for all the advice, It really helps in this confusing time in my life. So glad to find this site & message board!!! What a lifesaver! :o) Hugs to all!!!
bear in mind that ovary removal has been linked to loss of sexual pleasure and worse menopause than if naturally occurring. do lots of research and be sure you know what you're getting into and what the after effects are likely to be.
i'm hoping for a sub-total hysterectomy + BOS (which is removal of both ovaries), so i've been researching this stuff too. if you're having trouble finding stuff that answers your questions, try www.hysterectomy-association.org.uk or googling Bilateral Salpingo-Oophorectomy (BSO) which means removal of both left and right fallopian tubes and ovaries.
it sounds to me like you are definitely making the right decision for the future of yourself and your family. good luck and good health.
__________________ 32 single no kids size 24 (down from 32)
Metformin destroyed my digestive system
Now on Avandamet, which is a wonder drug. Can't recommend it highly enough. Ask your doctor for it if you're worried about Metformin side effects.
I also have ME, hence the "tired" user name.
Contemplating hysterectomy but have to lose weight first.
I am in a very similar boat, though I am still waiting on the results of the gene tests. My grandmother died from breast cancer at 43 and my mother has had both BC and ovarian cancer in the last three years.
I am very, very concerned about my own status, particularly since I have two young kids and a diabetic/heart conditioned husband.
I will probably go ahead and have a hysterectomy regardless of the results of the testing, as it is so new and there is so much they don't know in terms of what they're looking for with gene tests (they can only find the mutations they know about). I will not get my breasts removed unless I am either BRCA 1 or 2 positive.
Both my endo and gynae have said that a full hysertectomy is the better option at my age (39) because of the hormone therapy options that leaves: they only need to do one kind (I am so vague, sorry!) and so you don't get the potential increased risk of BC that full HRT may give you.
Anyway.
It's nerve wracking, horrible, horrible stuff and I feel for you. In terms of whether you are making the right decision, only you can know what's right for you - but it's certainly the one I would make if I were in your shoes.
Good luck with it all!
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I am horrified that lack of sexual desire and/or pleasure might be a side effect. At 34 not really ready to throw in the towel (so to speak) in this area. Does anyone know if any of those female drugs really work?
I'm really surprised whoever you're seeing about this hasn't talked you through all the side effects...you really probably need to talk with an endocrinologist about the HRT issues (which are connected with the loss of libido thing, amongst many others) - from what I understand they get mixed results with HRT re libido.
As somebody along the way said to me, whipping out the ovaries (or in my case, the whole lot) is the easy bit: it's the what-happens-afterward around rebalancing hormones that is the bit that takes a lot of work. It is no small undertaking.
However if they're recommended an oopherectomy on the basis of BRCA results you can be pretty darned sure you probably need one. From what I understand they are quite conservative about who and how they term 'high risk', though admittedly it is a very young and new area.
facingourrisk.com (or org? I can't remember - FORCE For short, the 'e' stands for empowered) would be a really good site for you to visit - it is full of people making (and having made) the decision to have their ovaries, and in some cases also their breasts, removed to lower their BC/OC risk. There's a huge amount of info there.
Hope that helps - again, I am sorry you are having to deal with this. I started down this path July last year, and it has been an ongoing, nagging stress in the background ever since. Once you start down the genetic testing route, there isn't much going back. It's one of those things in life you sometimes wish you could 'un-know', but there isn't any way to unknow it, unfortunately.
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Ovarectomy? Am I making the right decision? 
Thanks! 
total hysterectomy 
