1. < Women's Health

Uterine Fibroids: What's your experience?

Posted by tnabors @tnabors, Jul 28, 2011

I have severe pain (like labor pains) every month during my period. I also suffer from heavy bleeding. I have fibroids. I would like to know if any of you ladies have suffered from the same thing, and how did you cope with it. I am seriously thinking about having the Uterine Artery Embolization. Has anyone out there had this procedure, and if so, did it help...do you feel better...are your periods now "pain free??"

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 17, 2018
In reply to @lmtd "I have uterine fibroids and am trying to avoid a hysterectomy. My gynecologist has recommended an..." + (show)
@lmtd

I have uterine fibroids and am trying to avoid a hysterectomy. My gynecologist has recommended an uterine ablation. I have read some posts from women who have had an ablation and are now having trouble with yeast infections, discharge and vaginal odors that will not go away. Does anyone know about ablation side effects.

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@lmtd

By "ablation" are you referring to robotic surgery to remove the fibroids?

Teresa

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Mentor
Ginger, Volunteer Mentor | @gingerw | Sep 17, 2018

@lisalucier Wish I could have had ablation. By the time I was able to find someone to take on my case, surgery and hysterectomy was the only option.
Ginger

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1 reply
Kurgle | @kurgle | Sep 19, 2018
In reply to @lmtd "I have uterine fibroids and am trying to avoid a hysterectomy. My gynecologist has recommended an..." + (show)
@lmtd

I have uterine fibroids and am trying to avoid a hysterectomy. My gynecologist has recommended an uterine ablation. I have read some posts from women who have had an ablation and are now having trouble with yeast infections, discharge and vaginal odors that will not go away. Does anyone know about ablation side effects.

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I don't understand why the few current treatments for fibroids are the only ones that exist.

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1 reply
Lisa Lucier | @lisalucier | Sep 20, 2018
In reply to @kurgle "I don't understand why the few current treatments for fibroids are the only ones that exist." + (show)
@kurgle

I don't understand why the few current treatments for fibroids are the only ones that exist.

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Hi, @kurgle - I'd be interested in your experiences with fibroids. Have you had treatment for them? If so, how did it go for you?

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Lisa Lucier | @lisalucier | Sep 22, 2018
In reply to @gingerw "@lisalucier Wish I could have had ablation. By the time I was able to find someone..." + (show)
@gingerw

@lisalucier Wish I could have had ablation. By the time I was able to find someone to take on my case, surgery and hysterectomy was the only option.
Ginger

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Hi, @gingerw - you mentioned that by the time you were able to find someone to take on your uterine fibroid case, surgery and hysterectomy was the only option. Wondering if you'd share more about how that surgery and the recovery went?

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Mentor
Ginger, Volunteer Mentor | @gingerw | Sep 22, 2018
In reply to @lmtd "I have uterine fibroids and am trying to avoid a hysterectomy. My gynecologist has recommended an..." + (show)
@lmtd

I have uterine fibroids and am trying to avoid a hysterectomy. My gynecologist has recommended an uterine ablation. I have read some posts from women who have had an ablation and are now having trouble with yeast infections, discharge and vaginal odors that will not go away. Does anyone know about ablation side effects.

Jump to this post

@lisalucier My surgery was in Jan 1999. Prior to that there was excessive bleeding, and they attempted to induce medical menopause with four monthly injections of Lupton to stop the bleeding. Didn't work. Surgery was successful, left ovary was retained but right ovary extracted due to fibro is wrapped around it. Three or four fibroids removed, weighing a total of 7 pounds, cut was bikini line cut, not C-section style cut. I was up walking around within 15 hrs or surgery, doing laps around surgery floor pushing my IV pole. No pain meds loaded onboard, nor did I take any post recovery at home. My sister, an RN, watched over me for the first 10 days, and contrary to orders, I was climbing stairs right away since I lived in a townhouse apt. Hope this helps, Ginger

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2929 | @2929 | Aug 5, 2019
In reply to @lisalucier "Hi, @strongbutterfly -- since this thread is a little bit older, I thought you might like..." + (show)
@lisalucier

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?

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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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3 replies
JK | @contentandwell | Aug 5, 2019
In reply to @2929 "Hi, I'm new to Mayo Clinic Connect. I'm interested in finding the discussion thread about fibroids..." + (show)
@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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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

REPLY
Lisa Lucier | @lisalucier | Aug 5, 2019
In reply to @2929 "Hi, I'm new to Mayo Clinic Connect. I'm interested in finding the discussion thread about fibroids..." + (show)
@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.

Jump to this post

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?

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1 reply
2929 | @2929 | Aug 5, 2019

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.

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