Oophorectomy along with pelvic floor reconstruction?

Mrs Gnarly, you raised a good point. I never even gave it a thought as to whether or not he is skilled in laparascopic surgery. I think the world of him as both a person and doctor, so I am sure he will probably get upset when I ask him again about removing my ovaries. Afterall, it is my body, don't I have a right to chose what I want.

Lucille, thanks for your concern and I am very very sorry to hear about your situation. Is there heart disease and cancer in your family. I know we all want to do what is best for us and right now I do believe in my heart that I am doing the right thing. For five years I lived with an infection (encased in the uterus, and was never found until hysterectomy)and every doctor I went to dismisssed it as either Vaginitis, BV or UTI. Some of them even thought I was crazy, just telling me that all women have a discharge and not to worry about it. Well, after a while I just stopped going to doctors, I felt that no one wanted to help me. But all heck broke loose back a few months ago when I had bleeing as well as this very very heavy pus like discharge. The thoughts that went through my mind were awful. I kept thinking I had cancer, etc. I do not want that worry ever again. I know we all have to die from something, but if my ovaries are gone, that is one less thing to worry about.

Surferbabe, sorry if I gave you the wrong impression about my doctor, he is a very good doctor, came highly recommended, but it is just that he believes in women keeping their ovaries. If he refuses, then I will be forced to go to another Dr. Thanks for the link, I have not read it yet, but will shortly. I am also sorry for the troubles that you have had since your hysto. I hope things are going will with you now.

My heart goes out to everyone that is faced with a decision like this. It is definitely a very hard thing to do. This is truly a wonderful site with great information and it has helped me a lot.

hi peggy~

I just wanted to concur with mrs gnarly and share my story with you:
I had opted for a prophylactic LAVH/BSO due to my elevated risk factor for ovca (my sister has it). I sought out several opinions from 3 major cancer centers as I was struggling with what to do regarding my decision making process. I had also done EXTENSIVE research on my own, and I mean EXTENSIVE! Ever since my sister's DX in late 2003, I have only been seeing a gyno/onc. After seeing and dealing with my sister's suffering, and all of the MISDIAGNOSES of her cancer, I decided that gyno/oncs are light years ahead of regular gyno's in picking up on even the most subtle symptoms for any possiblity of early screening. You see, my sister was misdiagnosed as having IBS (very common for this to happen) even by her own gyno for over a year, obviously costing her VALUABLE time.
Pardon my rambling, my coffee hasn't kicked in yet and I'm still suffering from "fuzzy thinking" following my surgery on August 1.

OK...here is what happened to me...
I was seeing a gyno/onc for almost 2 years. He was always trying to convince me to go ahead with the surgery. I still was undecided until I developed a complex cyst on my ovary (45% chance of malignancy with complex cysts) and suddenly my decision was made. That whole experience was what made it easier for me to opt for the surgery. It turned out that the DR I had been seeing was not trained in laproscopic hysterectomies (so many are not). With that, I went to Hopkins for yet a third opinion. The DR there (omg, I just love him!) concurred with the recommendation of surgery and said he could do it laproscopicaly. Obviously, if there was a need for the surgery, I would want it performed as less invasive as possible, still being safe about it.
Needless to say, I chose the DR from Hopkins to perform my surgery and all went off like text book surgery. I am forever grateful that I sought out this doctor as my recovery time is probably cut in half now...I actually feel quite good and am only almost 2 weeks post op.

My point is...
Be PROACTIVE...while I hear that you really like your DR, if he/she is not trained in laproscopic procedures, I would suggest another opinion. Trust me, your current DR should in no way feel offended, rather have your best interest in mind. I'm sure that would be the case, if not, they are doing you a disservice anyway.

It's your body and your health...listen to your gut instincts and go with what you feel is best being as informed as you are.

I wish you the best of luck in whatever you decide and a speedy and uneventful surgery and recovery!

Again, I really apologize for the RAMBLING post...need another cup of coffee

'S
Heni

Dear Heni, thanks for the response. I know exactly what you are talking about. I saw my dear aunt, whom I was extremely close with die from ovarian cancer, I was four months pregnant with my first daughter, and I can still remember what she looked like, it was just awful, the pain and suffering that she went through, and that has forever stayed with me. To see someone who you loved suffer that much, and she too had gone and gone to doctors and they could never find it, until it was too LATE. Luckily she was able to hang in long enough to see her first grandchild born. She passed when he was two months old. So that is one of the main reasons I want this done.

Hope you got to enjoy your coffee.

Peggy

Hi Peggy and others on this thread

Here comes more of my thoughts ..
Let me first say that I work in public health, have a medical science degree and a membership to the New England Journal of Medicine. I know how to read research studies and look for errors in their findings.
You will find a bazillion (word?) studies out there that will conflict with each other! Even doctors will conflict back/forth with their opinions. It may seem like it's a crap shoot in your decision, but you can make a well educated and informed decision, then accept it and live (well) with your plan.

With regard to what Lucille in CA posted,
Do you have any heart disease in your family? Also, auto immune disease, dementia, osteoporosis, digestive or bowel problems?

I guess I was born into this world with a double-edged sword. My mother has OvCa, her grandmothers died of OvCa, my grandmother and aunt (father's side) had colon cancer, her daughter (my cousin) had OvCa at age 20..........and BOTH mother's and father's side have heart disease (high cholesterol, open heart surgery)

That being said..
I opted for the removal of the ovaries.

Please visit this link to (my expert source) the American Heart Association: http://www.americanheart.org/present...tifier=3029581
When you read this study, you will perhaps think that there is a real risk of heart disease post-hysterectomy.
But pay attention to these key points of the study:

Women who had just a hysterectomy had a 23 percent increased risk of cardiovascular problems; those who had a hysterectomy and oophorectomy had a 28 percent higher risk. Read on..

At trial entry, women who had undergone hysterectomy tended to be more obese; have larger waists; suffer more hypertension, diabetes, and higher cholesterol requiring medications; and they had higher white blood cell counts – a sign of inflammation. Women with hysterectomies also exercised less and consumed more saturated fat.

However, when researchers accounted for all cardiovascular risk factors, they discovered women who had undergone hysterectomies had a slight but statistically non-significant higher risk than women who had not had the surgery.

While the study was not designed to answer why women who have a hysterectomy have a higher rate of risk factors, researchers said the likely explanation is that women who had hysterectomies in this study tended to be of lower socioeconomic levels than the women without hysterectomy.

Did I increase my risk of heart disease? I do not think so! I'm monitored by a physician annually, I take Zocor (similar to Lipitor) to lower familial high cholosterol, I exercise, am in my ideal weight range and have a fantastically healthy diet. I have had a stress test done and passed with flying colors.

There is no evidence that the removal of ovaries causes autoimmune diseases or digestive disturbances. I suffered from IBS prior to this surgery and feel BETTER post-op!

There is also no evidence that removal of the ovaries causes dementia! In fact the WHIMS (Women's Health Initiative Memory Study) discovered that estrogen replacement does NOT reduce the development and progression of dementia. http://www.wfubmc.edu/whims/ (click on news release) Rather estrogen replacement (to replace what is lost by removing the ovaries, or by natural menopause) was demonstrated to show a slightly increased risk of dementia.
Visit the National Institute of Neurological Disorders and Stroke (NIH and Dept HHS are my experts) http://www.ninds.nih.gov/disorders/a...ersdisease.htm
No oophorectomy mentioned here as a cause!

Osteoporosis:
Both an oophorectomy AND going through natural menopause will increase a woman's risk of osteoporosis.
This has been proven. However - you can increase your Caclium intake (1200mg/day for a woman who has passed through natural menopause, and 1500 mg/day for a women who has been through surgical menopause, no ovaries) and increase weight bearing exercise and have a bone scan to track bone loss.
Presently the patient information for Estrogen Replacement Therapy says: "Do not take this medication to prevent osteoporosis. Take a non-hormone medication for prevention of this disease."
Visit the National Osteoporosis Foundation http://www.nof.org/prevention/risk.htm
for more info.
I am thin and probably at risk for this, but my calcium intake is 1500 mg and I lift weights daily and will track with a bone density scan. If I need to, I'll take Actonel or Fosomax.



It is important to note that all of these side effects (osteoporosis, heart disease) have very effective screening tools for diagnosing early and very effective treatments.

However - OvCa does not have a good screening tool (yet), is often caught in the advanced stages and while there are better chemo treatments in use these days, the quality of life is obviously lower.

I wish you the very best in making this personal decision.
I wish there could be a quick/easy answer.
I feel more peace of mind after my surgery.
I'm sad that they did the hyster on my mom at age 38 and left her ovaries in and dumped synthetic estrogen (Premarin) on top of those ovaries for 30+ years.
I don't honestly know if her OvCa was hereditary, estrogen-induced (there is evidence that estrogen + ovaries increases risk of OvCa for every 10 yrs on the estrogen), or a combo of both.
At any rate, there was no good screening test to identify this problem in my mom. She had an annual pelvic exam in September (detected nothing) and was gravely ill in December (same year). CA-125 and pelvic ultrasounds are not deemed good screening tests.

Best of luck with your decision.
Shoozie (almost 3 months post op and feeling great, at age 45, no HRT)

shoozie~

I, for one, want to extend my HEARTFELT thanks to you for all of the [b]VALUABLE[b] info you always post for us sisters!

I always follow your posts as I know I will learn something new and interesting every time in doing so.

Thank you for taking so much time and putting forth such effort as you do!

Tons of 'S to you!
Heni
PS...I sent you a PM today...have you seen it yet?

There is STILL no good screening test for ovarian cancer and the success rate for treatment is miserable. Heart disease is readily detectable AND treatable. We've all got to die from something, but personally a coronary is preferable to ovarian cancer. We all have to do our own math and consider our risk tolerance. I didn't even consider keeping those things, they were pretty well shot anyway (path report confirmed atrophy) and don't miss 'em one bit.

We are all going to die of something.
[Did you know the biggest risk factor of dying is - living? HA..not to sound glib here, but.. if you live, you will die. ]

The screening tests are better for heart disease (and osteoporosis) and managing both of these is far better than ovarian. My really goes out to those who have the challenge of any form of cancer!

I feel healthier than ever before. I was pretty healthy before this surgery, but I'm paying much more attention to everything I eat and enjoying every day of life!!

Shoozie

Shoozie,

What is your input on bioidentical hormones. Comments on soy milks, flaxseed and omega 3. I am not to take hormones but these things are natural and I want to hear your comments.

Hi WVgal

Well, I don't think that synthetic hormones (Premarin/Prempro) are the way to go. That molecule is not even an exact match to what we produce. (And there's something about horse urine that .. well, doesn't sit well with me.) And the WHI (Women's Health Initiative) has demonstrated that there are serious risks with these (why do drs stil precribe them?)

Biodienticals?
I'm not sure there are enough studies on these to know what the effects are. Unfortunately, we (our generation) is the test group. I'm a bit upset that no one tried testing any other hormones years ago. Guess they were making enough $ on the Premarin, that no one investigated other hormones.
It would stand to reason that a "bioidentical", exact same molecule that we produced, would be the way to go. And if I had really bad bad symptoms, that I could not control by any other means, then this is the way I would go. I also would go with transdermal (patch), or sublingual (under the tongue) or creams before I'd ever go with oral estrogen. Reason? Oral estrogen goes through the liver and it alters a bit and also can cause gallbladder problems later! (The other forms of delivery bypass the "first pass" through the liver, the go RIGHT into the bloodstream, avoiding the GI tract)

I've also read that the bioidentical (estradiol) is still a strong estrogen (E2) and it will still migrate to the estrogen receptor sites (breast). Problems usually arise when exposed to higher amounts and for longer periods of time.

I do take vaginal estradiol (Vagifem). This form of delivery is supposed to be "localized" only and does not enter the bloodstream in any measurable amounts, thereby reducing risk to the breast. Of course that means it will not help your hot flashes either.
It does help my problem with the loss of vaginal estrogen, thinning walls and spotting and (whew) the urinary urge issues!! Since the urethra lies right alongside of the vaginal walls, this delivery helps both areas. (I even read a post where one gal thought it helped her IBS symptoms. I'd agree with that one too.)

Omega 3
I take Omega 3/6 (L'oreal makes it!)
These are EFAs (essential fatty acids). and in a balance (the L'oreal vitamin has the proper balance of Omega 3/Omega 6), they help your heart/cholesterol. I believe they are also supposed to help your hair/skin/nails. (I have purchased the Omega 9: evening primrose oil.. haven't tried it yet, to help my thinning hair. )
You can do a search on the American Heart Association site and read more about Omega Fatty Acids.

Phytoestrogens (soy, flaxseed - also an omega fatty acid)
There really aren't a lot of studies out that address the usefulness or safety. But there is a lower risk of breast cancer in Asian women, and there are some that believe it has to do with the soy intake. However, the US has really jumped on the wagon with soy, but our version of soy is the unfermented type (soy milk, tofu, some soy powders).
And there is some question about unfermented soy may cause thyroid problems.
The type that is ingested in the east is "fermented soy"
miso, tempeh. (I tried both of these and didn't like the taste). I use a fermented soy powder (Jarrow Fermented Soy Essence, with calcium/magnesium)
I mix it in a fruit smootie twice a day. Yum!
And I'm getting my fruit intake for the day.

Also (forgot to mention this to Heni)..
I have added flaxseed to my diet since I've had the surgery. Flaxseed has lignans in it - and there may be some benefit to prevention of breast cancer with lignans
I buy the ground flaxseed and bake it in bran muffins, or I sprinkle it on oatmeal (my son says it looks like sawdust!)
It tastes better in the muffins. I just bake a batch every Sunday and eat 2 at work each day. (I add raisins, dates and sometimes apples to the muffins.)

And yes.. I am a friend of the bathroom! (Quite regular)

I'm almost 3 months post-op and have vitually no surgical menopause symptoms (I'm only 45, and had not entered menopause prior to the surgery).
I don't really know if I'm one of the lucky ones, or if something is working, or .. if some day I'll get the bad surgical menopause symptoms??

I still say, my goes out to those gals who have very bad symptoms! And if they ever hit me, I'm going to be slappin' that bioidentical patch on my posterior!

Shoozie

About the question: WHY do women who have hysterectomy already have more cardiovascular disease risk factors? Things such as hypertension, diabetes and high blood pressure? The statement, "it looks as if women with hysterectomies have more heart disease because women who get hysterectomies also have more risk factors,” bears, in my mind a closer look and brings up the question of "WHY is this?"

My theory is that because the number one reason for most hysterectomies is fibroids and fibroids are a SYMPTOM of something wrong in the endocrine function of the ovaries and not a disease within itself. The same endocrine dysfunction that can cause fibroids can also be the cause of all those other, mysterious, pre-existing conditions. Therefore, it does not surprise me at all to hear about the condition of most women who undergo hysterectomy. Yet, rather that find the true cause of these problems, most doctors just treat the symptoms. (Hysterectomies)

As for my own case, I had no disease, and I really had nothing wrong with my reproductive organs. I was misdiagnosed and consented (unknowingly) to a completely unnecessary hysterectomy and oophorectomy. My hormones were working well and in full throttle, therefore, the hormone shock that my body went into was severe and profound and directly caused the strokes, heart and cardiovascular problems I experienced. No, I was not overweight, no, I did not have high cholesterol, hypertension, thyroid, IBS or any other endocrine related disorder before the surgery. I weighed in at 110 pounds and was fit and active already ate healthily. Again, this would fit into my theory.

Doesn't it seem possible that the researchers from that study are, once again, not looking at the overall picture? By their own admission, they did not look into the reasons "why" and wrote it off as socioeconomic. Well, that would fit my theory too- as lower income women would not receive as much comprehensive diagnosing as their more financially able counterparts.

Because of the misinformation floating around about the effects of hormones on the cardiovascular system, I was not allowed any hormone replacement therapy at all for about a year and half. During this time my health deteriorated enormously. Only later did I learn that our bodies store our natural hormones and that some women use their stored supply faster than others. I ran out within weeks but some women can take as long as a year to use up their supply. This why I strongly caution any women to think carefully when basing their decisions on the experience of others. The side effects of oophorectomy are long term and for some women, can take many years to develop while others may experience adverse effects immediately. You just never know.

I believe that when considering the advise of experienced women, you should look for women who are least two years post surgery. Go to the other threads and read the post. Read the Road Less Traveled and Sexual Dysfunction forums. Gather information from ALL sides and resources. I have a file full of messages from women who have written to me saying they thought they were "lucky" and had no problems at first, yet, here they are, a few years down the road with a different story.

I also do medical research and subscribe to the NEJM and I concur with shoozie that you need to read these studies carefully because they are full of conflicting conclusions. You also need to take into account who funded the studies and what other motivating factors may be involved. (It is interesting for me to note, like any other publication, how much of the content of the weekly NEJM consists of advertising by pharmaceutical companies. Remember, doctors are human too and they are swayed by creative advertising just like everyone else.)

The full function of the ovaries as endocrine organs has not, in my opinion, been studied enough. The discoveries made about these remarkable organs in just the past few years show that we do not fully understand their functions and closer scrutiny and better understanding are long overdue.

Brain fog, memory loss and diminished cognitive abilities have long been documented as side effects of hysterectomy and/oophorectomy. During the time I had no hormones all, I could barely get to the store and back, let alone do the calculations needed for my work and research. Naturally compounded, bio-identical hormone therapy gave me back the ability to use my brain within days. (Not all of it.) I am not alone. Hundreds of thousands of women have reported similar experiences.

These are very hard decisions to make. All I want is for women to be aware of the endocrine functions of the ovaries when making these choices. It's easy to say if this or that happens to me then I will just pop another pill and that will take of it. The reality is that for many people, the pills to cure subsequent problems can also have deadly effects or long term health consequences that may not even be known yet. Some women find out that their bodies cannot tolerate "replacement" hormones or calcium supplements or other medications. Our bodies are intricate, complicated and delicately balanced organisms. When we dispose of one of these organs, we can never be sure what the consequences will bring. Relying on someone else's science or opinions can be costly or even life threatening. We must also use our own wisdom and intuition.

Science is not a democracy. The vast majority of doctors may hold one opinion to be very true and yet they may be completely wrong.

Best wishes to all,