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Uterine Fibroids: What's your experience?

Women's Health | Last Active: Nov 15, 2022 | Replies (49)

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@2929

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.

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Replies to "Hi, I'm new to Mayo Clinic Connect. I'm interested in finding the discussion thread about fibroids..."

Hi @2929 Welcome to Connect.

Why does your ob/Gyn not feel safe waiting? Is it just the speed of growth that has the doctor think there could be a malignancy? If that is a possibility can’t a biopsy be done to find out?

I can understand your concern. I have not had that problem, but I have read that hysterectomies are done too frequently. That is serious surgery. Before you move ahead I would definitely seek a second opinion.

Please let us know what progress you make in getting more info. It just seems as if something is missing here.
JK

Hi, @2929 - welcome to Connect. Yes, I would feel frustrated and frightened, too, if I got the message to relax about uterine fibroids and then all of a sudden was feeling rushed into a total hysterectomy after an ultrasound report.

I had a hysterectomy personally in my early 40s as part of surgery to repair prolapse. I will say, however, that though my husband and I had determined to not have any more children well before the prolapse got so bad that the surgery was recommended, I was surprised that 2-3 days before my surgery I had a very emotional reaction, like fears about someone taking my right to choose to bear children. My surgeon talked me through it and explained that some emotion almost always comes before or after this type of surgery ,.. that it was normal. This helped.

I'd like to bring into this conversation @bandolsmom @travelgirl @cherelle @kurgle @lizwhite80 @gingerw @muffincat for any input on having uterine fibroids and/or having a total vs. partial hysterectomy and to provide some support for you as you work through your feelings and try to make the best decisions.

What symptoms are you having currently, @2929? When will you find out if the OB/oncologist in your area (who your primary care doc recommended) will take your insurance so you can get a second opinion?

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?