Uterine Fibroids: What's your experience?

@contentandwell, the whole question of a biopsy is one that I have, too. (I always think of these questions about an hour AFTER I've left the appointment.) A friend, who is not a medical professional, wondered how much can be assessed during surgery - like, while they're in there, can they determine the presence of abnormal cells, and then remove the ovaries or not, depending?

I think my overwhelming feeling here is, why isn't there more conversation in medical offices, and why do we (well, me) let ourselves be rushed out of appointments with our doctors before we've gotten a satisfactory overview of something as significant as the removal of three (four?) organs?

Hi, I'm new to Mayo Clinic Connect. I'm interested in finding the discussion thread about fibroids to see if anyone else has had a similar experience (and similar feelings about it) ...

I'm 52, my GYN has just recommended a total hysterectomy (in which ovaries and cervix come out as well, as opposed to just taking the uterus and uterine fibroid/s out). As she put it, she's concerned about the rapid growth of my largest fibroid since my last ultrasound, 4 yrs ago.

My Primary Care doc explained that probably my GYN is concerned about abnormal (in other words, cancerous) cells lurking in my ovaries and cervix, because of the rate of growth of the fibroid.

I'm hoping to find out if an OB/Oncologist in my area (who my Primary Care doc recommended) will take my insurance, have look at my latest ultrasound and give helpful advice. Because I'd like to keep my ovaries - unless the advice is overwhelmingly to take them out. I'm not in menopause yet and, frankly, I'd just as soon keep the organs responsible for producing whatever estrogen, progesterone and testosterone they still do.

So here's my confusion and the cause of some angry feelings: the first fundamental fact you read/are told (consistently!) about uterine fibroids is that they're benign. The message, overwhelmingly, is 'relax, many women have them - if they're not causing significant quality-of-life issues, best to live with them'. I'm now feeling frustrated - and frightened - because I did indeed relax about it. I managed my symptoms and got on with life. And life was busy, so I missed some GYN checkups. (My bad, I realize, but I had ailing parents, a hectic job, all the usual excuses. Also, I don't ever recall getting the message, Yo! it's important you get this thing measured every year!)

So now my GYN is rushing me to have major surgery within the month because, as she puts it, she wouldn't feel safe waiting. Yikes.

Apologies for the length and the rant, but I feel there were conversations that should have happened between my GYN and me, and I wonder how many other women have had a similar 'relaxed' attitude about uterine fibroids only to later receive a frightening ultrasound report and feel rushed into accepting a total hysterectomy as the best option.

Thanks in advance for any shared experiences, any perspective, any positive outcomes from having a total hysterectomy for fibroids... I know it could be a lot worse, but I'm an active 52 yr old, and not looking forward if, indeed, a total hysterectomy is what awaits me.

Hello @2929,

We can all understand your concerns about being rushed into a total hysterectomy. It would be a life-changing procedure. Usually, with fibroids, there is heavy bleeding. How is your hemoglobin level? If it is within the normal range that should be a consideration. Seeking a second opinion is an important option in your case.

I have a family member who had a serious uterine fibroid situation and she found a doctor who was able to remove just the fibroids using robotic surgery, without having to do a hysterectomy. Has this been suggested? Also, has a D&C been done?

Wow, as I was typing an edit to my original post - for clarity - your two replies came in. Thank you for the quick responses. 🙂

My symptoms, for abt 6 mo now - have been increasingly heavy and painful periods, and slight bladder and lower abdominal pressure, especially during my period.

I've left a message with the oncologist, am awaiting a response.

@lisalucier, very sympathetic to your feelings just before your surgery. While I am happily child-free, I am feeling anxiety and, let's just say it, fear, about the repercussions of menopause, especially as regards my sex life with my husband (I hope it's ok to mention this here). I'm spooked by all I read about 'not feeling like yourself' as menopause takes its course, both for my personal life and professionally.

I think I have a very competent GYN/surgeon. I've had to change GYNs through the years, due to changing insurance plans, and it's been ages since I had one who takes time to discuss matters beyond basic points.

Hi @hopeful33250 and thanks for your reply. To be clear, I actually agree with the reasoning for a hysterectomy. My fibroid measures almost 10cm and, from what I gather, removing the uterus is best practice at this point. (Fibroids almost always re-grow, and removing just the fibroid is a riskier surgery, typically only recommended - from what I read - for women who still want to conceive. I'm 52 and happily childless, so that's not me. 🙂 )

My main concern is my doc's recommendation to remove ovaries and cervix, as well as the uterus. I'm still struggling to understand why the rush to remove additional organs when I've not had an abnormal PAP smear and I have not started menopause yet. I wonder if screening for ovarian or cervical cancer is somehow more difficult after removal of the uterus? My primary care doc said that in perimenopause, there is sometimes a greater risk of cancers growing/spreading faster, and maybe that's why my GYN wants to be so aggressive with treatment?

Thanks again for your very good questions - it's all helpful at this point. : )

Just wanted to post an update: I've since gotten a second opinion - invaluable! - and also spoken to several friends who happen to be going through this same thing - all of whom have recently had a hysterectomy bc of fibroids, all of whom had it done laparoscopically. (Turns out I had friends suffering from the same pain and frustration this summer and I didn't know. Which raises the question - again - of why many OBGYNs dismiss uterine fibroids as easily as they do.)

In my situation, it turns out my GYN - who's also an oncologist and surgeon - just has a particular mindset when it comes to fibroid removal in women over, say, 50yrs: she is of the opinion that any risk of ovarian cancer is too big a risk, so why not just eliminate the chance of that happening, since "you're not using your ovaries anyway". Also, it turns out my GYN doesn't have access to the equipment needed to perform the surgery laparoscopically at the hospital she's affiliated with, which is why she was recommending a full-on abdominal incision-type procedure.

The doc I went to for a second opinion has a different take on the situation and he's affiliated with a better-equipped hospital. He believes the documentation that's been out for a little over a decade demonstrating potential health risks associated with the premature removal of ovaries because - as I'd read online - the ovaries continue to play a beneficial role in the body for several years past menopause. (I think it's maybe connected to heart and lung functioning? Can't remember.)

Now, obviously, if you have a personal or family history of reproductive cancers (cervix, ovarian, breast, etc.) it may be wise to prophylactically take out some or all of those body parts. But for me - no family history, all clear PAPs - the potentially damaging health consequences to removing my ovaries (not to mention I'd like to experience menopause naturally (gradually) instead of being plunged into it overnight) are enough to make me want to keep them as long as I reasonably can.

Next steps for me: have an MRI to get a clearer image of the tumor than ultrasound can provide - that way, this 2nd surgeon can make a better-informed decision about my risks for getting ovarian cancer. If the MRI reveals any signs my tumor is malignant, we'll re-assess. But for now, the plan is to remove - laparoscopically - only my uterus, the fibroid/s attached to it, and fallopian tubes.

Either way, women should know that when hysterectomies for fibroids are done laparoscopically, they now 'bag' whatever they're removing (uterus, fibroids, etc) to prevent any potential 'spill' or 'spread' of abnormal (cancerous) cells into the abdominal cavity. (Please correct me if I've got any of this wrong, this is my best recollection of what the doc - and friends who've had the procedure - described.)

For now, I'm grateful to have found a surgeon who is confident that we can get the offending uterine fibroid (and uterus) out without doing a full-on abdominal incision -- it means a shorter hospital stay, less pain-management afterward, less chance of complications, easier recovery, etc.

If I can possibly swing it, I'll get a third opinion as well. I've never been more convinced in the wisdom of getting more than one evaluation of any medical issue - the disparity in what one doc said over another was an eye-opener. Hope this helps anyone facing these choices...

Hi, @strongbutterfly -- since this thread is a little bit older, I thought you might like to meet here on this thread some Mayo Clinic Connect members who've talked about uterine fibroids a bit more recently, such as @kurgle, @lizwhite80 @allenjane14 @shuaishuaiforxiuqin @rdrdhap @pbeach @terryinboulder @saoirse @taniavalkyrie @ncross16 and @ladyfc. They may have some insights on the condition and about the uterine artery embolization procedure you are looking into now.

You may also be interested in this Mayo Clinic video Q&A about uterine fibroids: http://mayocl.in/2scr0DP

What symptoms have you been experiencing due to the fibroids?