Ovaries Removed at Age 25?

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    Hi, I am a nursing student who is taking time off from school cause of pelvic pain problems. I have a past medical history that is pretty complicated including endometriosis, polycystic ovarian syndrome, Pulmonary Embolisms, DVT's, Superventricular Tachycardia, PVC's, and low magnesium.

    I just recently went to a gynocological oncologist, sent there from a Gyn doctor who says I am too high risk for them. Anyways, this oncologist told me to really consider taking out my ovaries, sparing my uterus and possibly freezing my ovaries for use later by a seraget (sp?) mother. The reason this issue came up is because I have been having severe pelvic pain over the last 2 years, 4-6cm cysts on my ovaries every month and endometriosis covering my bowel, ovaries, bladder, and uterus. The doc said that because of my medical history, I would be a huge risk factor if I were to get pregnant. Because of my blood clots (which I am on coumadin for life), irregular heart, HTN, and low magnesium. He said any high risk OB-GYN doc would say I was crazy to ever think about getting pregnant. Plus the fact that it might be super hard for me to even conceive.

    So I am only 25 years old and have a huge decision to make within the next year. Cause my insurance will be gone off of my parents in about a year. So if I am going to do this, I need to do it rather soon. But I don't want to rush into anything without consulting experts and nurses like you guys.

    Any suggestions? Any websites that you know of? Will I have a hard time going through menapause? Or do I live with pain for the next 25 years until I naturally go into menapause?

    Oh, and I have tried almost every drug there is for endo and polycystic. We did find out that I am insulin resistant and therefore taking Actos or Glucaphage does bring my periods back and decreases the size of the cysts.

    So, anyways, any advice? Thanks, curleysue.
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  3. 16 Comments so far...

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    It's your decision to make, and since I'm not a nurse yet I don't have any practical advice.. just wanted to say good luck with whatever choice you make and hope you get some relief from your pain.
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    If You Need Your Ovaries Out To Prevent Cancer/early Death Than You Have No Decision. Yes, You Are Young To Have Both Ovaries Removed, But It Has Been Done To Others YOUR AGE,AND EVEN YOUNGER. You Would Have To Be On H.r.t. Therapy To Prevent Bone Destruction Such As Evista, Which Also By The Way Helps Prevent Breast Cancer Unlike Other H.r.t Tx. You Would Also Have Be Very Selective With Your Diet, Making Sure You Get Adequate Calcium/mag. You Would Be Best To Speak With A Dietician After You Have Your Surgery. Good Luck To You...
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    I have no experience of such an extreme measure for this condition. Other than asking for advice here maybe a second medical opinion would be of value?
    One UK self help group that seems to be recommended and also gives sound advice and support is
    http://verity-pcos.org.uk/ and they have discussion boards.

    Two other points I am not sure you would be a candidate for Hormone Replacement Therapy because of your history of thromboembolism. Similarly pregnancy would carry huge risks for you, given your medical history and as you say your chances of conceiving are limited too.
    All the advice in the world doesn't detract from the ultimate question "should you have your ovaries removed" and only you can make that decision.
    Good luck with your search for information and your ultimate decision making.
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    Curleysue, I notice that you live in Oregon--are you anywhere near OHSU in Portland? I would get a second and maybe a third opinion there from the high risk OB-GYN folks--they are some of the best in the world. So are the docs at Good Samaritan, in Northwest Portland--but I would start with OHSU.
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    There is a website that I found while I was on leave when I had my hysterectomy. It is www.hystersisters.com

    There is a wealth of information there, it was started by women for women having problems. There is a section just for endometriosis (which is why I had to have a hyster), with tons of links for information that may help you.

    Good luck to you and I wish you the best!
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    I was younger than you when I had an exploratory lap which revealed that the pain (bad enough it used to make me grab the wall) was from widespread endometriosis. It was everywhere, and there were adhesions as well, thought to be secondary to the endometriosis.

    I already had one child, had wanted many more, and was a newly wed.

    I bargained with my docs and got a year in which to attempt to become pregnant, husband had a terrible car accident halfway through that, and nothing baby-wise happened.

    There apparently were no drugs being used at the time, or maybe I was too far gone for medical intervention, I don't know.

    I had a total hysterectomy, ovaries and all. Apparently my preop pain was worse than I had realized, since I was in no pain less than 24 hours postop, walking up and down the hall, bending over and touching my toes. (Of course the surgeon claimed my miraculous condition was because of his superior technique.) The pain from the hysterectomy was nothing compared to what I had been enduring.

    No one told me I would be dumped headlong into menopause, or that even though my head was okay with never having menses or the possibility of another pregnancy, my heart wasn't going to "get it" for about ten years.

    I controlled the physical symptoms with monthly injectable Depo-Estradiol (worked better than any pills I had taken before or since), but that aggravated my fibrocystic disease. About two years ago my doc talked me into oral meds. I suspect any estrogen (my own or artificially supplied) would have aggravated the breast problems.

    When I turned 49, and was in nursing school and got distracted such that I actually forgot to take my meds for months, I realized that I felt just as good without them, including the estrace. I've been off everything now for more than a year, my only problem is the occasional hotflash. I just drink a cold bottle of water and it disappears. Never thought of that when I was younger!

    Anyway, I figured, if I was a normal person, I'd be having menopause now, enough is enough. The breast specialist thought that was great. I don't know about my GP doc, since I fired him shortly thereafter for other reasons. So far, though, there don't seem to be any problems. I don't have the dreaded vaginal dryness, I am not any more moody than I was (maybe less so), I didn't get acne and the few little whiskers (oh, yes) that I used to get are less now, and grow much more slowly. So, all things considered, I'm pretty pleased with where I am physically, and (and this may not be a proper use of the word) gynecologically.

    Bottom line, I wished I hadn't had endometriosis, I wished I hadn't had the hysterectomy, I wished, I wished, I wished.

    But what I got was what I got. The only advice I can offer to you is to make your best decision with the info you have now, learn how to accept whatever it is you decide to do, and then do it. It sounds like you are pretty uncomfortable and that you have exhausted nonsurgical remedies.

    I don't know why you would keep your uterus without ovaries since you could not (I'm assuming) carry a pregnancy and would not have menses. Ovaries are pretty important hormone producers, they send chemical signals for other organs to pay attention to, and without them, the rest of the machinery doesn't work. Your uterus remaining without any purpose is, in my mind, just leaving you with an organ which can become cancerous eventually, and which will be doing you no good between now and then. If you are dumping your ovaries, I'd get rid of all of it.

    The good news is you can have a perfectly healthy life without your reproductive gear. Thousands of us have. They say there is no testicle to bad to remove, or any ovary good enough to keep (reflection on the misogyny of surgery).

    Thank God you are not debating whether to keep your kidneys or lungs or something else seriously vital!

    I do believe that if you keep your gear for the next 25 years until menopause stops the whole shebang, you will spend the next 25 years focused on your discomfort, where you are in your cycle, etc. Chronic pain does not make us stronger, it just makes us b***hier. Your own quality of life should be a consideration.

    How important is it for you to bear children? If this is not a big deal to you, since you asked, I'd have everything removed. Take hormone replacement once a day (or once a month, as I did), and the rest of your life is your own, unfettered by the signs and symptoms of your disease.

    I wish you luck, as an endometriosis "sister," and offer you a shoulder or an ear--feel free to email.

    On the positive side, there was research at the time I was where you are that indicated a strongly postive correlation between, of all things, endometriosis and intellectual development.
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    Everyone thanks so much for listening and responding. I need all the advise I can get. It is such a huge decision for a women to make. And I don't have a husband or boyfriend right now so I don't know if that would scare men away in the future not being able to bear children naturally.

    Well I haven't had a lot of time to research into this but I will start soon. Thanks again for all your comments.

    Oh and yes I do live near OHSU in Portland, OR. So that is an option to go there and seek more information. Maybe I will go see a high risk OB-GYN to ask if I am that big of a risk to carry children or not.

    The hard thing for me to accept is that I don't know if I would ever have problems concieving. You never know. You could be healthy as a horse and still have problems concieving. So, I don't know what to do right now. I will think about it over the next few months to a year. Curleysue.
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    I also have PCOS and endometriosis.I would highly recommend getting a second opinion.I was in your situation before.A doctor wanted to remove my right ovary at age 23 and I didn't have anybody to have a baby with.I also felt terrible at the time.This doctor put me on Ortho-Triclen for 2 months.It made me sick.She offered no other medication and recommended a partial hysterectomy.

    I changed doctors.My new one put me on Yasmin and I have lost 60 lbs.My symptoms are alot better now.My uterus is upside down.She said that it may just mean I'll have to have a C-section or maybe not even that.Hopefully,my fiance and I will be ttc in about 2 yrs.

    I will also say that adoption is a great thing if that turns out that surgery is what's best for you.I wish you all the luck in the world.
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    First of all I highly recommend getting as much education as possible on the subject because the more knowledge you have the better decision you can make. I had my ovaries and uterus removed at 23 after 2 years of trying unsuccessfully to have a baby through PCOS/endometriosis and unbearable pain...we tried every drug and IVF several times before giving up, and for us the surgery was the right thing to do. I've never felt better in my life!

    I agree with one poster who said that you may not be a good candidate for HRT because of your history of blood clots, etc., but I have taken them and now I'm not taking them, and other than an occasional hot flash I feel just fine. I'm now 27 and even though I sometimes wish I'd been able to have a baby and all, I'm perfectly happy with my life. If I ever decide to adopt in the future, there are tons of kids in the world!

    I guess what I'm trying to say in a round about kind of way is to think long and hard about what's best for YOU and make the decision that way, but be sure to get as much info as you can about it before you do it, and a 2nd or 3rd opinion wouldn't hurt either...best of luck to you!!


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