Fibroids -- how large is too large?

Hey ladies,

I had my second opinion yesterday, and the doctor completely freaked me out.

I have to admit, I've been entirely remiss about keeping my annual gyn exams (I know, I know, never again). Anyway, I had gallbladder surgery last month and they found a large (ok, it's huge) 22 cm fibroid. I don't have any symptoms other than a bachache (but I have arthritis too), and I have a kidney that has shrunk somewhat (which explains the kidney infections I had a few years ago.)

When I had my first surgical consult, the doctor seemed calm and talked to me about the risks of removing it and of leaving it there, etc...

The guy I saw for the second opinion was much more adamant that I needed to have the fibroid removed NOW, even to the point of saying that the tumor is so large it's life-threatening.

I'm not sure how freaked I should be about this? I decided to go with the doctor I saw for my first opinion, he seemed to be just so much more confident and capable -- but should I be more worried about this than I am or is there anything I should be asking the doctor about that would mak the surgery safer?

Hi Chris,

I recently had a 23 cm fibroid removed mg: and my doc refused to do it by myomectomy, insisting I had a hysterectomy. They refuse to as cutting it out causes too much bleeding and so there is a risk of haemorraghing. I had a myomectomy for a smaller fibroid 7 years ago and they put me on Lupron for 3 months to shrink the fibroid. I still had to get 2 blood tranfusions though. This time round they weren't taking any risks and insisted on a hyst. Again, I got Lupron for 3 months to shrink the fibroids to make the surgery easier (and less of an incision for me).

I was also told it was life threatening to the extent that if it ruptured I'd haemorrage as there is so much blood involved. It was also pushing on my kidneys (lower back pain) to such an extent that my doc was afraid of kidney failure in the future.

If you have children I think about getting the hysterectomy. My fibroids all grew back with a vengeance after the myomectomy.

Take care.

Chris,

Okay...girl...I am holding your hand. It is large.

It is really good that you have seen two doctors and have gotten two opinions. You get an A+ for that.

And being honest with you, you are in the "very" large range. I had two fibroids, 6.5 and 8.5, which meant a 15 cm uterus. That is very large also. In my research, a large fibroid is anything over 5 cm.

And...please...be reassured your fibroids are operable. That is the good news!!

I FREAKED too when my Dr. said I needed a hyst. I went to the gyneo once a year and I had normal exams and then LARGE FIBROIDS!!

What happened?? My genes. My mom and sisters have fibroids, my estrogen level and my age. Wow...it hits you like a ton of bricks, I know!!

So - get a third opinion even. Find a Dr who is well-trained and someone you TRUST right now.

Good Luck. We Hyster Sisters are here to help.

My largest fibroid was "only" 9cm*9cm*8cm. I called it the "basketball" because it rolled around.

Ummm...yours is bigger. Too bad we aren't guys and we would be competing...

I got 9 medical opinions before making a decision. Don't hesitate to do whatever it takes to get info/recommendations until you feel comfortable with a decision.

Iphie

I have large fibroids making my uterus be a five-month pregnancy size total. I forgot the exact numbers but I do remember the five month thing. AND - "small volleyball" was what was used to describe the size of the fibroid. Get as many opinions as you need. I tried to ride it out through menopause {i am almost 49 now} - my goal was to "stay physicall and emotionall intact through menopause". NOt really realistic for me on either count. The hormonal fluctuations I am having perimenopausally was like miracle grow on my fibroids and they doubled in volume from Sept of 03 to March of 04. And I have all kinds of symptoms. I can really see how these growths can begin to impinge [and even threaten] other major neighboring organs. They also get their own blood supply [robbing me of mine!] I really feel my whole life has been going down the toilet - literally and figuratively! For the first several years of knowing I had [small] fibroids - it was a "wait and see" approach. How quickly things changed! I am a typically terminally ambivalent person, so it has been SO difficult to make up my mind and say YES, I am having this surgery. I will tell you, that the size of the fibroids made this more obvious to me. anyway, hope this helps! Jo-Ann

Yikes, I just got the pathology report and the big fibroid grew a lot in the 6 weeks between the MRI and the operation. I guess once they get rolling they can grow pretty fast. The report says it was "360 grams, 14 x 11 x 8 cm aggregate of irregular tan-pink rubbery nodules, several of which are partially surfaced by smooth tan-pink serosa", etc. I have a photo of it.


I didn't know that "rubbery" was a medical term...

Iphie

Mine's at 24 and growing. Hope it doesn't grow too much before the 18th. I really look 8-9 months pregnant. My reg Dr. said I should name it "Hugo" for Huge. Hugo seems to be more football shaped.

Hi everyone,

Thanks for your posts, I definitely appreciate it.

After consulting with both docs, I decided on the supracervical hysterectomy, which means I get to keep the ovaries providing they look spiffy. They had some problems seeing one since the fiborid was in the way, and they weren't sure if it was normal or had been squished or deprived, so I wouldn't be surprised to wake up and find out I'm missing one or more of them.

I named my fibroid Marvin (for Marvin the martian) since I feel like I've been told I have an alien inside me. Marvin's coming out party is on July 20th, so I'm feeling a bit more secure about at least having made the decision. I think part of my insecurity about the whole thing was the shock value -- not only has this "thing" invaded my body, but it's huge, and the docs tell me it has to be dealt with right the heck now. Ok, Ok, I'm not the best at keeping up with my own health. I've always been an "if it's not broke, don't fix it" kinda girl. Here it was broke all along.

It continues to surprise me that we women (and our health care professionals) know so little about our own bodies. Five years ago I saw a doctor for what I termed "an orange growing under my skin". Most likely it was my fibroid even then, but they also found a kidney infection, so that's what they treated and the pain went away. Now that kidney that has shrunk to the point where if I don't get this fibroid out, I may lose it entirely.

For the past couple of years I've had problems with muscle twitches and cramps in my legs. Docs couldn't find anything after an ultrasound, x-rays, etc... Eventually they concluded my arthritis was causing it, now they tell me they think my fibroid's impinging a nerve occasionally.

Had an ultrasound for my gallbladder just a few weeks ago. Technologist looked at the rest of my abdomen and commented on a white area that was visible, then said it's probably nothing, but that some people with diabetes have a whiter appearing pancreas. I don't have diabetes. Turns out it was my fibroid, had my doc re-check the pictures.

Hey Ladies, after re-reading your responses, I'm going to start a new thread. If you come back through this message, could you please respond to a thread I'm going to go out and call Questions about fibroids? I'd appreciate your input.

Thanks again all!