Um.... does anyone care to talk to me about hysterectomies, surgical menopause, etc?

staceyneil · February 28, 2014, 1:40pm

I know this is maybe a weird/uncomfortable topic to bring up. Sorry :(

I would really love to hear from anyone who has experience with any of this. I feel very overwhelmed and alone in this decision. My H is supportive but her really can’t understand it since he’s not a woman. he just wants to fix it :)

I’ve just been advised to have my uterus (and possibly ovaries) removed. I’m having a really hard time deciding what to do. The reason for the recommendation is very large uterine fibroids. These cause very heavy/painful periods and may be contributing to some frequent urination problems as well. My doc said I could try the UAE procedure, but the fibroids are so large that she isn’t confident it would help and might just be back again in a year for the hysterectomy anyway. So they recommend removal of the uterus altogether.

She also suggested I may want to have my ovaries removed at the same time. I am a breast cancer survivor; I was dx at age 34 with triple-negative BC (so, non-hormone related…) However we are waiting for a new genetic test this summer because someone suggested I may fit the profile for some new cancer “syndromes” (though I am BRCA negative.) if I tested positive for those, it would mean my risk for more BC or other types of cancer, possibly including ovarian, would be increased. Right now, my risk for anything ovary/hormone related is just a bit over general population. I think general is like 6% and I’m like 10%. So everyone’s like, “hey while we’re in there why not take out the ovaries to eliminate the slight possibility of a hormone related second BC, or ovarian cancer.”

I am 47. My mom went through menopause at about 52/53. I believe I’ve been in peri-menopause for about 13 years, since my chemotherapy which caused a temporary menopause. I already get night sweats, have trouble sleeping, am very fatigued, prone to feeling depressed, have some incontinence issues starting, have some memory issues starting, etc.

I’ve been reading about surgical menopause after ophorectomy/hysterectomy, and am terrified by what I’ve read. It sounds so sudden, drastic, and horrible. I read some awful statistics about how surgical menopause causes a statistically shorter lifespan (heart disease, osteoporosis, etc.) and how there’s a 2-fold increase in cognitive decline and dementia later in life!!! Plus that many women suffer INCREASED incontinence problems. (And due to my BC history we don’t feel comfortable with hormone-replacement therapy…)

My recently-deceased grandmother had very bad osteoporosis and very scary dementia. So these issues are quite important and firghtening. And the quality-of-life stuff (incontinence, memory, insomnia, depression) don’t sound like much fun either.

So I’m thinking, why on earth am I considering putting myself through this, when the fibroids are not a life-threatening problem??? Basically it’s a quality-of-life thing… and I’ve been living with the bad periods and frequent urination already (which could just be peri-menopause anyway, right?) So why would I trade that set of KNOWN quality-of-life issues for an unknown, and possibly MUCH worse, set of probable consequences? Not to mention having to go through a fairly serious surgery with a 6±week recovery period where I won’t be able to live my normal life…

I asked the drs specifically if I could consider doing nothing, and they said, “We don’t recommend it.” There IS another consideration which is that my mom had uterine cancer at age 62-ish.

Right now I am leaning towards having just the uterus removed but not the ovaries, and letting myself have a more natural menopause. I’m somewhat surprised at myself for this, because I’ve always been one to take on the most drastic anti-cancer treatments suggested. but in this case I just don’t know if the small possible benefit justifies the quality-of-life reduction it seems likely I’d experience!

Thanks. Sorry if this is weird.

Stacey

michiganbuckeye · February 28, 2014, 2:31pm

I had a partial hysterectomy about 7 years ago (age 35 or so)–a great decision for me. The surgery was minimally invasive–not to gross you out, but they took uterus through vagina with 2 small incisions on abdomen. My recovery time–hospital one night & up walking next day. I was slower the first week, but then back to normal. I think I did have to not do anything strenuous for a while, but it really didn’t impact my movement & daily life beyond a couple of days.
I kept my ovaries as I was still in my 30’s & better to keep the hormones going
Although I haven’t researched lately about all this, it seems for every article out there, there’s another one that completely contradicts it. There are things to do (many times it’s simply exercising regularly) that help prevent or at least help slow down dementia & osteoporosis, etc. So don’t scare yourself with just the gloom & doom stuff.

Good luck!

Pootie · February 28, 2014, 3:01pm

I don’t have a strong recommendation for you one way or the other, but can share my own surgical menopause experience.

I had my ovaries and uterus removed at age 34 after a diagnosis of “borderline ovarian cancer”. (The small tumor on one ovary was not frankly malignant, but hysterectomy was recommended because sometimes such tumors can sometimes become malignant over time).

Initially, it was difficult for me. I felt an emotional loss because I was still in my childbearing years and the option to have another child was eliminated. My sex drive was reduced and my husband seemed unsympathetic. I had night sweats at first but estrogen took care of the worst of it, and over time this has diminished.

Now that I am 55, it does not seem like a real problem. My friends are all going through menopause, and I am not plagued by the mood swings, sweats, and symptoms that they are. I get bone scans and my bones are fine after 21 years of surgical menopause. I don’t seem to be any more forgetful than my peers. I believe I am as continent as the average 55 year old. My husband and I enjoy sex though it can take some work to get “in the mood”…but again, that’s probably normal for many 55 year old women.

I recently watched a 60-year old friend die of a prolonged and miserable death of ovarian cancer and am grateful this will not be my fate.

In summary, surgical menopause was tough on me for the first year or two, but is no longer an issue. Perhaps a second opinion from a doctor would help you with your ultimate decision. Good luck to you.

jaylynn · February 28, 2014, 3:23pm

I had a very similar experience to yours (feel free to pm if you’d like). I had such big fibroids that I could feel my uterus from the outside. You could see it. Unpredictable awful bleeding for three years. Tried all sorts of nonsurgical treatments (injected lupron worked best but can only be done for a set amount of time). I believed and was scared by all the online propaganda/hype/true issues. Travel was a nightmare-- would I ruin all my clothes? Would I be able to get to a bathroom if needed? When I fainted on my front porch one day I decided enough was enough. Had a vaginal hysterectomy but she left my ovaries. I am confident my OB/gyn can check them regularly and I didn’t have to worry about surgical menopause (though friends of mine have said it was ok after a certain amount of time, similar to above post). I didn’t even have to have the abdominal incisions–my surgeon was able to do it all vaginal (in pieces. It was gross. She showed me a photo.) I’m 53 and had the surgery last year and should have had it two years before that.

I should have done the surgery way before I did. Such a change in my quality of life. By the way, I’m a physician too, researched all the options and discussed other treatments (my husband is a radiologist and so has info and opinions re ablation, embolization, etc, and I still chose surgery.) Good luck.

staceyneil · February 28, 2014, 3:44pm

Ladies, thank you SO much for these replies. I can’t tell you how helpful it is just to not feel so alone.

michiganbuckeye, you are right, there is lots of hype on the internet. I’ve tried to be very aware of that and not dwell on the more fringe-type pages, and more on the very mainstream ones like webMD, etc. I’m glad to hear your recovery was easy: that is the same procedure they are recommending for me.

Pootie, I totally understand what you went through about having kids. I had chemo for my breast cancer at age 34, right when my H and I were about to start trying for child #2, and that ended our hopes for another child. It was incredibly difficult.

jaylynn, I think it’s so funny that you are a physician yet described it as gross! That was exactly my reaction when my dr described taking the uterus out through the vagina. It sounds like your surgery was totally the best decision for you from your description of the fibroid symptoms you were having. My symptoms are just so much less serious… so the thought of trading them for possible worse ones scares me.

jaylynn · February 28, 2014, 3:47pm

Then you could explore other options that wouldn’t include surgical menopause. And my ‘gross’ comment was about the photo of my poor (gross!) uterus in pieces after the surgery. The surgery may have been gross too, but I didn’t see it! Well, I saw one in med school.

Emaheevul07 · February 28, 2014, 3:52pm

I can’t tell you anything from personal experience, but my mom had very bad fibroids in her mid 40s. They were the size of grapefruits and she was bleeding extremely heavily, for her it was not really elective. She would stand up during her time of the month and go white as a sheet and it would pour out of her, sorry for TMI but for her it wasn’t just “bad periods,” she would faint and be in agonizing pain. She even looked larger because her abdomen bulged from the fibroids, they said her uterus was the size of a small watermelon. She chose to have her ovaries left in because she was told otherwise she would start having menopause symptoms immediately, but she started having hot flashes right afterward anyway. Her surgery was hard because her fibroids were so large it could not be done laproscopically, and she had to have a sling inserted to keep her bladder from prolapsing so she had a few procedures done at once… her case was unusually bad. So far, she seems to just have hot flashes, though, and not terribly bad ones… it has been probably 4 or 5 years and she doesn’t complain about anything else, she’s 50 now. Nothing drastic, nothing terrible. The weirdest thing-- she still gets “cramps” during when her time of the month should be, even though there is no uterus. There were no side effects or complications from the surgery besides the hot flashes starting right after.

Her surgery was traumatic because they had to do the full open procedure which isn’t done anymore unless necessary according to her doctor, it was very painful and she was laid up for weeks. Given HER circumstances, I think if she wasn’t so afraid of menopause she might have chosen to have the ovaries out just so there would be no risk of ever having to go back in for them later in another surgery. She doesn’t ever want to have surgery again. I suppose her symptoms may have been worse if she had taken the ovaries out, too, but not having them out didnt insulate her entirely either. Things still changed the minute she had the surgery. But some good things, too-- her asthma went away and so did all her seasonal allergies. I think she would say her quality of life is greatly better than it was before.

staceyneil · February 28, 2014, 4:43pm

Thank you! It is good to hear of positive outcomes too. I’m glad your mom’s doing well. Thank you very much for sharing this.

I’m going to have another discussion with my GYN. It’s really helpful to have these different perspectives and experiences to help inform my thoughts and the discussion.

PhotoOp · February 28, 2014, 5:10pm

I’m on the nonsurgery side of this issue. Fibroids, horrendous periods. I’m almost 52. My GP doctor says you’re 51 and still having periods !?!?! My gyno was sympathetic. I told her straight up I don’t want surgery. She said she could poach the lining. I said you mean, cook it? (I know what poaching is.). She said, well yes, essentially fill it with very hot water and it will slough off. Gross! No thanks. Anyway, she gave me a prescription that has done wonders. Wonders I tell you. I can survive my periods. It is prescribed to people with excessive bleeding. It just slows it down. It doesn’t stop it, just slows it down so I don’t faint, I don’t have to stay home from work. Hopefully I can wait it out until menopause. If you’re wondering, it’s Tranexamic Acid. Taken only when you’re bleeding. I don’t know if I’ll escape hysterectomy. My mother had one, my sister had one, I may end up there eventually. But so far I’ve managed. I don’t want surgery. Not. at. all. But I will if it becomes cancerous or whatever, but for inconvenient fibrous bleeding - no. It will stop - sometime - won’t it? So they say anyway. I have no idea when, since my mother and my older sister weren’t able to wait it out.

PhotoOp · February 28, 2014, 5:15pm

The other thing you can try - I don’t remember your age - my GP let me go on BC pills continuously until I turned 50. It was heaven. No periods whatsoever. Ever. Pure heaven. Then I turned 50. He said I couldn’t take them any more.

PhotoOp · February 28, 2014, 5:20pm

Sorry - don’t mean to fill the board - I also wanted to mention that if you feel you are having memory problems, try incorporating weight training into your exercise regimen. It does wonders for your mental clarity. I’ve been slacking lately and can really tell the difference - I need to get back to the gym myself. It’s also good for your bones.

PetraElise · February 28, 2014, 5:33pm

No personal experience to give that would be helpful, but I did work for an amazing OB/Gyn for years, and one thing I learned in cases like this is that you should always get a second opinion. Having worked for doctors of various specialties over the years, I can assure you that there are many situations in which one doctor will tell you this is your only option, whereas another doctor may have a viable alternative. Some doctors get stuck in one way of thinking, and there is a certain tendency to feel that their game plan that they always use is the right one for every patient. Not all doctors are like that, but many are. Sometimes doctors within the same practice will have different approaches, but I would suggest seeking an opinion outside your doctors practice. It may require that you pay out of pocket, but a few hundred dollars is worth the confidence you need to make the best choice. Be sure and get all pertinent records and test results to take to the second consultation. Best of luck

sryrstress · February 28, 2014, 6:34pm

My experience was much like photop’s. I have always had very heavy, painful periods. 3.5 years ago, 46 years old, the pain and swelling was so bad. Every time I bent over forward, I could feel them. I definitely envisioned the worse, as I have had several large ovarian cysts.

Ultraound revealed large fibroid tumors. The doctor enthusiastically recommended surgery. He also said to take the ovaries while in there. He said there was no way to do it laparascopically SP?, so I said, “No thanks.” I did research enough to be assured they weren’t any more likely to become cancerous. I don’t mean offense to anyone who has a hysterectomy, for any reason, but I do think many doctors rush there as the first answer. Same with the high rate of c-sections. This was a dr. I’ve had for 25 years, like and trust.

All my friends have been running around barefoot and in tank tops for years. Pretty sure I’ll be the last to get there Things have calmed down quite a bit, although the bleeding is still heavy at the beginning. For me, I’m glad I made the decision to wait.

benreb · February 28, 2014, 7:22pm

I am also 47, and had a hysterectomy in December, but for other reasons (severe prolapse issues). I kept my ovaries, so I can’t speak to the instant menopause issue, but I wanted to let you know that the surgery and recovery for the hysterectomy was not that bad at all. Mine was done vaginally, and I only had to spend one night in the hospital and was actually up and walking around about 7 hours after the surgery. I was pretty tired for a few days, and they don’t want you to do any heavy lifting for a while, but other than that, I was back to normal pretty quickly.

Best of luck with your decision. I know it’s not an easy one to make.

jaylynn · February 28, 2014, 7:49pm

Agree that everyone should do what is comfortable for them. I didn’t want surgery; my OB/gyn was totally on board with that; went through every nonsurgical treatment we could do (I was also trying to wait it out), never rushed me. But I am so glad I did it; my experience with recovery was just like benreb’s–up and about by Day Two and felt great by a week out. Maybe not being anemic had something to do with it :)

ECmotherx2 · February 28, 2014, 8:13pm

Have you spoken with an oncologist? You have a lot going on with your history of breast cancer and fears of surgical menopause if your ovaries are removed as well. Do you live near any major cancer centers or large research/teaching hospitals? It would be a good place to start with accurate information about your choices and consequences. There are so many conflicting journal reports and studies. I wish you the best of luck in whatever your decision will be.

SOSConcern · February 28, 2014, 8:25pm

I am a stage IIIa breast cancer survivor -treatment began at age 53; my cancer was very aggressive, and thankfully I responded well to aggressive treatments (everything thrown at it) and have been cancer free for almost 4 years.

I have three friends that have either had uterine or ovarian cancer after breast cancer. One had Brac I or II and should have had reproductive organs removed (she is now having quite a fight with ovarian cancer). One friend was also triple negative breast cancer - then she had uterine cancer (began bleeding after years of menopause) - we have the same radiation oncologist, and Dr said she might have some genetic marker that has yet to be identified; she has had successful treatment. The 3rd had uterine cancer and a recurrence of her breast cancer - I do not believe she had aggressive enough treatment the first go-around, but she didn’t want much intervention and did not understand the risks she was taking. She did not understand her medical oncologist, and when she told me what he said, I explained it in terms she would understand (I am a RN). She could not tolerate much treatment with the recurrence, and passed away.

I had peri-menopausal symptoms since I was 42, 43. Tried to deal with those as best as possible. Being active and getting down to my goal weight helped, along with Progesterone cream (made by local pharmacist) - testing showed I was low on Progesterone (low functioning on right ovary).

Since you are 47, although you are questioning keeping ovaries and/or uterus; to me it took the cancer monkey off my back when I had a laparoscopic assisted vaginal hysterectomy, BSO Feb 2013. My uterus was prolapsing and something was showing up on my right ovary (which never worked well - both my pregnancies were from my L ovary; I also had amennorhea since mid-20’s, so was on birth control for monthly cycle). I met the insurance criteria for the hysterectomy surgery, and it was a real relief to me. My CA-125 was negative; the uterine endometrial biopsy was negative.

My feeling is that there were negative physical changes going on, and not enough is known to sometimes catch cancer situations soon enough.

I do not believe they know enough about the relationships between Ovary, Uterus, Breast Cancer risks and interplay. Your family history would have me scheduling ASAP for L.A. Hysterectomy B.S.O.

6 weeks after my hysterectomy, I was able to get active again. I feel better than I did when I began with peri-menopausal. Since I am estrogen positive breast cancer, I am on Tamoxifen; I have gotten use to the side effects of Tamoxifen, and believe it is giving me protection from breast cancer recurrence.

Good luck with continuing to be a cancer survivor. In your shoes, I would not ‘play with fire’.

frugaldoctor · February 28, 2014, 8:42pm

Get a second opinion. Most insurance companies pay for that. Stay away from non reputable websites because bad information abounds on the web. Even sites like WebMD provides good info, but readers may focus on the rare risks and leave the site uninformed.

A TVH (total vaginal hysterectomy) or LAVH (laparoscopically assisted vaginal hysterectomy) can only be performed in a smaller uterus. These are less invasive surgeries. Waiting too long can lead to a uterus that is so large that a TAH (total abdominal hysterectomy) with a large abdominal incision, potential blood transfusions, and significant recovery could be your only choice.

Never rush into surgery but delays may cause more harm than you’ve anticipated.

eyemamom · February 28, 2014, 9:27pm

I had cysts on my ovaries (at the time the doc couldn’t be sure if they were cancerous or not), endometriosis and adenomyosis (that’s endometriosis in the uterus) Something no one has mentioned is when you go through surgical menopause you are more likely to have heart issues. My family has a much higher rate of heart disease than cancer so that was a big concern to me.

I had surgery to remove one entire ovary, most of the other one and my tubes. By leaving just a sliver of ovary I still release the hormones/eggs.

I also am on the pill for bleeding, but the doc also suggested an iud. Just recently I needed to have a leep for a blister like somethingerother on my cervix. My technical name.

In all honesty I didn’t have the uterus removed at the time of the ovary because I just didn’t have the time for that kind of recovery. Which in hindsight was kind of dumb. However, now that I’m on seasonique and I had that other surgery I barely get my period.

People also say once you get your uterus removed you will no longer orgasm. I’m not sure if that’s a wives tale or the real truth.

Darn woman parts - I’m done with babies obviously but the problems still linger.

Bromfield2 · February 28, 2014, 9:55pm

Stacey: I was in a very similar situation. I had very large fibroids and an enlarged uterus (gyn said it was like a uterus at the fourth month of pregnancy). Also, I had long and exceedingly heavy periods–I couldn’t go out of the house the first day of my period because the I had to change tampons every two hours. This happened when I was your age. I figured I would hit menopause soon and the problem would go away. Four years later–I still wasn’t near menopause and went to my ob/gyn who specialized in fibroids to see what I could do other than surgery. The first thing she told me was that I needed a hysterectomy. I got opinions from two other doctors (including one at a Harvard teaching hospital in Boston who specialized in uterine fibroid research); each one said the same thing–you need a hysterectomy.

I decided to go ahead and have the surgery; also decided that I would have my ovaries removed. The doctor I choose suggested that I not make a decision about hormones immediately but that I should just deal with healing from the surgery. I had the surgery and it went well. I recovered quickly. I was up and walking the first day and was able to drive 6 weeks later. I never took hormones. The only menopausal symptom I had was night sweats and I could deal with it. I’d wake up sweating 3-4 nights a week, change my PJs and go back to sleep. The night sweats lasted about 6 months.

It’s 10 years later–I don’t have any of the post-surgical issues that you mentioned in your post. No osteoporosis–in fact, my bone density test indicated that I was 1.5 standard deviations over the mean. I don’t have heart disease. I’ve completed 5 of the 60-mile 3-day-breast cancer walks in those 10 years since the surgery. I’ve lost 40 pounds and do weight training and can handle heavier weights than my trainer (a woman who is 12 years younger). Having a hysterectomy was the right decision for me and I wish I hadn’t waited 4 years to do it.

It’s a tough call and I remember reading all of the negative stuff that you’ve read. For me, I got to the point where the quality of my life for a week each month was absolutely so miserable that I decided to have the surgery and see what happened. I got three opinions from ob/gyns–that might help with your decision. I know it helped me because they all recommended the same thing.

My biggest issue was figuring out if I should have my ovaries removed. The doctor I choose was great–she’s left Boston and is at the Mayo Clinic–if you’re anywhere near there, I’d say go and get her opinion. Anyway–she told me that the women who seemed to do the best post-hysterectomy were the women who made a decision and stuck with and didn’t agonize about it. She said, if you decide to remove your ovaries, then stick to that decision and figure out how to deal with the result. It was good advice. Good luck with your decision.

Um.... does anyone care to talk to me about hysterectomies, surgical menopause, etc?

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