confused beyond belief

I am so confused I am going to scream.

I am scheduled for a hysterectomy on December 26th due to fibroids. Been avoiding it as long as I can but I guess I gotta do it now for my health.

I am confused about the ovaries though. My doctor said it's my choice whether they stay or go. He says they should go because ovarian cancer is very hard to detect and is almost always fatal. Ok, that makes sense to me. He was telling me that once the ovaries are removed, I would be put on estrogen only replacement. He was telling me that is has none of the side effects as the combinations HRT's (heart disease, etc). But everything I've read on the web contradicts this. Am I misunderstanding him? Or maybe remembering wrong? I do recall him saying that I could be on this regimen the rest of my life with no problems, or I could eventually be weaned off it (my choice according to him).

I don't want to find myself feeling worse after my surgery than before. Actually my only symptons are very heavy monthly bleeding. I do have back pain which might or might not be caused by the fibroids. But he is worried about me spontaneously hemorrhaging plus my fibroids are growing on a regular basis. Right now my uterus is the size of a 13 week pregnancy.

Help!

Pat

There are probably a lot of women here who know much more than me, but I thought I would chime in since I am here now.

My mom is on Premarin only and her doc says that the risks are much lower than the Prem-Pro combination - sorry if I got that wrong. The one that the recent studies were about was a combination therapy. There are, of course, risks with the estrogen, but you have to weigh that against the risks of not having any hormones in your system at all.

Is their a high risk of ovarian cancer in your family? I'm one of the ones who wants to leave everything I can except the parts that are diseased - for me that is the cervix and the uterus. If my doc sees anything terrible going on with my ovaries, she can have them, but I would prefer to keep them, especially since I am 26. There isn't a high risk of cancer in my family, though, and I would want to avoid cancer and more procedures if the risk was high enough, so I would let her have them if that was a big concern.

It is very confusing, isn't it. I hope I haven't confused you more!

Nik

I too am confused. I am having my hyster on monday the 15th. I am an RN so I thought I knew for sure what I was going to do about hormones afterwards. After reading both sides of the issue I do not know what to do. They are definately taking my ovaries and I feel that is best considering the risks of ovarian cancer and that being hard to detect. But the hormone issue is......scary.

I plan on letting them take everything. My mother had a hyst at 26 and went for 30 years before she had to take anything. I am hoping that I can dot the samething. Although, if I have to take HRT it has to be better than what I am going through right now. I have muscle aches, severe mood swings, and fatigue.

I also don't want to have to have two surgeries when one would work just fine.

Pat, sounds like your surgery is for the same reasons mine is, and your doctor told you all the same things mine did! Here's what I'm planning to do. I'm also a healthcare professional, but like Sher-K, had to do a bunch of reading before I could make a good decision for me.

1. My ovaries are fine according to Ultrasounds, but I'm having the BSO done ONLY because that way I never have to worry about ovarian cancer. Since I'm adopted, I don't have family history to help me figure out my genetic risk. Your doctor is correct; there is NOT A SINGLE effective early screening test for ovarian cancer, so I'm not going to tempt fate.

2. I'm perimenopausal already (hot flashes, mood swings, some irregular cycles), so I'm going to start estrogen-only HRT post-op, then wean myself off over a few years. The combo HRT is the one causing all the heart trouble, and the estrogen only kind will keep the bone loss, etc to a minimum until I get older (when normal menopause would occur). I plan to take HRT for several years, slowly weaning off it so I don't get dropped into menopause virtually overnight; I'll stop the hormones (I think) when I pass age 50. I could stay on them safely for a longer time, but don't plan to at this point. Might change my mind later as more research comes to light! Plenty of studies over the years show estrogen does provide some protection from heart disease.

One of my best friends had TAH-BSO in the early 80's (she was 24 at the time), and has been on Premarin ever since with no ill effects. Her bone density is good, heart function is great (she has a family history of early heart disease, so monitors that carefully), and she's a good example of how it can work. I'm sure some women don't do as well.

The research keeps changing, and that makes it tough, too. I guess all any of us can do is make the decision that works best in our own lives based on the best information available to us at the time. Something new and different may come up tomorrow, but I'm not planning to wait!

Good luck with your decision. I know how tough it can be!

Hi Pat.

I had a TAH/BSO last week for fibroids and a history of benign ovarian cysts. The doctor had been keeping the cysts under control with hormones for two years, but told me that if I kept the ovaries, the cysts would likely keep occuring, (even without the uterus). He said a large percentage of the time, docs end up doing a second surgery a year or two after the hyst, in order to remove the ovaries. He also told me that women with a history of ovarian cysts, (benign like mine), have a statistically higher risk for getting ovarian cancer. He said it would be my choice, but recommended having the ovaries removed as well to reduce the overall risks and likelihood of a second surgery down the road.

My main concern were the health risks associated with HRT. My mom died at age 49 of heart-related problems. I am 41 and was worried about developing heart problems, blood clots, etc. with the hormones. My doc assured of the same thing your doc said. In women who have had hysterectomies, they only need estrogen supplements, (which the ovaries produced naturally anyway). Women who go through natural menopause, (not surgery-related), need the combination HRT which includes progesterone, because the progesterone prevents the lining of the uterus from building up and getting cancerous cells. With natural menopause, if you don't take progesterone, you have an increased risk of endometrial cancer because there are no more periods to slough the lining of the uterus every month. The progesterone keeps it thin to protect the woman from cancer.

In hysterectomy patients, the progesterone isn't needed, because there's no uterine lining to be concerned about. My doc assured me that it is the PROGESTERONE not the estrogen that tends to cause the problems I was worried about. I have been taking an estrogen supplement since my surgery 8 days ago and feel very comfortable with it. There is an increased risk of breast cancer with estrogen, but if it's properly regulated, the risk shouldn't be any higher than it was pre-op because your ovaries are producing estrogen anyway.

I apologize for the length of this, but my concerns were so similar to yours that I did tons of homework on this subject. Hope this info helps.

That's my biggest fear on the whole thing. Right now I'm scheduled for a second myomectomy, but I know the HRT questions are the biggest thing to make me think I want to wait to have a hysterectomy until later -if the fibroids come back again. I'm only 40, but have a family history of ovarian cancer (sister) and heart disease. My doctor says because of the ovarian cancer history, he'd want me to take the ovaries. Yet, I hate to shut down the estrogen supply and have heart disease come earlier - my dad is the 7th of 12 siblings to have to have at least one heart bypass surgery.

At this point I've just scheduled a myomectomy because of those fears. I'm still single and really don't expect that I'm avoiding a hysterectomy to be able to have children - just doubt Mr. Right will come along while there's still time - and I've had SOOOO many female problems it would be a serious "but God..." miracle if I could ever get pregnant. I just am not well versed on how many chances I'd be taking if I did or did not do HRT if I did the hysterectomy instead of a myomectomy. I had the fibroids taken out three years ago and I've got a new crop the same size as last time. Since I'm so darn good at growing fibroids I expect they'll come right back again. What to do? I'm sort of thinking of making an appointment with my doctor just to get his complete view on all of this. There's so much to read and understand on all of this.

Jay Jay, GREAT point; once the uterus is gone, life really IS less complicated from the hormonal point of view. Guess I look at this as another benefit of hysterectomy!

Civilgal, sounds like you're ready for a serious heart to heart with your doctor. The hardest part is getting all the info together to make a good decision.

Hi Pat
I'm going through the same thing. I'm removing my ovaries, because I'm almost 50 and I decided that they won't be of much more use so the risks as far as I'm concerned outweigh the benefits. I think it depends on your age and history what the decision is. My mother had premenapausal breast cancer, so hormone use is not indicated for me. I've tried to wait as long as possible to put off the hyst, had a fibroid embylization a year ago, and now I'm on Lupron to try to shrink my uterus and help to get my iron levels up (I'm anemic).
I'm planning on doing low dosage hormones for as short a time as possible , if the Lupron is any indication of what my symptoms will be, again, I think the benefits outweigh the risk.
Besides, I don't ant my DH to get pnomonia. I've been sleeping with the window open and it was 9 degrees the other night.
I hope this is of some help.
Beth

There is a great new book out about ovarian hormones and HRT. It's called It's My Ovaries, Stupid! by Elizabeth Vliet, MD.

I read this cover to cover before my surgery and am glad I did. I feel much better informed now.