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20 cm Fibroid and what the doctor said today! 20 cm Fibroid and what the doctor said today!

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Unread 01-28-2006, 06:51 PM
20 cm Fibroid and what the doctor said today!

I am in the same situation with huge fibroid 22 x 17 x 13cm. I felt that it had gotten bigger since my last ultrasound 2 years ago when it was 10cm. I was scheduled for another ultrasound but before I was able to go for that ,the fibroid started degenerating. The pain is like labor pains (without the break in between) and I passed pieces of the fibroid! This entailed two visits to the emergency room. I am now on Lupron to shrink the fibroid before hysterectomy and because I am anemic and dr wanted to get blood count up. I was terrified at the thought of surgery but now realize it must be done in my situation.
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Unread 01-28-2006, 09:07 PM
20 cm Fibroid and what the doctor said today!

I wish I had had access to this info all those years ago when I had my surgery. As several others have said, you may be playing with the integerty of several vital organs over a fibroid tumor. Yes a person should look at options, but really, I doubt you have very many. I don't know how big my fibroid was, even the operative report does not state it, except it uses language like this "the large mass posterior was a large leiomyoma occupying the lower portion of the uterus and cervix and forming a mass approximately two times the size of a normal fundus. The upper part of the fundus was anterior. The tumor was low enough that it distorted the normal anatomy of the cervix, reflexion of the peritoneum and the anterior bladder flap. " So that is the OP report. In plain language he said the tumor was so large it was growing out of my cervix. It had wrapped itself around my bladder. It had to be cut off piecemeal . I bleed terribly and ended up in intensive care. I had copious amounts of a milky white discharge all the time. I had bladder spasms, I cramped all the time. I looked to be 3-4 months pregnant. I am very glad I had the surgery b/c i did feel much better afterward. Originally they left my ovaries, even though they had small cysts on them. I was only 28. But within 6 months, I had huge cysts(grapefruit size, I could palpate them myself) on both ovaries. I had them removed.
Unread 02-10-2006, 05:13 PM
20 cm Fibroid and what the doctor said today!

Just an update from the consultation today with the IR. He has done the UFE procedure for over 5yrs. and has completed over 200 procedures.

The IR stated that the size of the fibroid was not an issue, it used to be considered but as the procedure and skills have improved it is becoming less of a concern. We went ahead and completed the MRI as this gives the IR a better idea what is really going on in there. The IR said that the readings from the MRI will tell him if the tumor(s) are amendable to the procedure. As he explained it would help him determine the success rate in my case.

In my case, since the size reading came from a CAT scan, he thinks the size reading is probably exagerated, and may actually be more than one tumor. We also did an ultrasound and bloodwork.

I should hear from the IR next week if I am eligible. More details then...

Thanks all!
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Unread 02-10-2006, 07:38 PM
20 cm Fibroid and what the doctor said today!

Hi (((Tilei)))

Just sending you s as you investigate your options. Saying a prayer everything works out the way you want it to. Let us know what you find out from the I.R.

Gentle s,
Unread 02-10-2006, 09:14 PM
20 cm Fibroid and what the doctor said today!

I'm just gonna chime in here with my experiences for you.
I had a 5cm fibroid and a few other "little ones" a bit over 3 years ago.
My ob/gyn at the time was like you NEED a hysterectomy.
I was not ready for it and did some research and found out about Uterine Arterial Embolism.
I told him that's what I wanted and I got it.
He was quite surprised when I told him about it and at the time he maybe had 5 patients that had it done. Since he wasn't the one doing the procedure, (the IR does it as you know), I went with it. All I did was buy some time, which was a good thing, IMO.
I went for ultrasounds every 6 months after that to keep an eye on the fibroids, and switched to an awesome ob/gyn.
As of last July my 5cm fibroid was up to 7cm, and this past Dec. when I went for my 6 month check, it was up to 9.2 cm.
My gyn was straight up with me and recommended that I get a hysterectomy, or come back every two months for ultrasounds, as it was starting to grow very quickly.
She told me in some women their bodies "create" new blood vessels to feed the fibroid. I"m one of those women. sigh.
I went home, talked to a few friends, my Mom, and decided I was ready to "take the plunge" so to speak.
When my Dr called me with the results of my pap smear I told her that I was ready for the hyst and to set it up.
And here I am.
Just my experience with UFE. The operation was not traumatic at all, except I learned that I was sensitive to morphine, and I healed beautifully. It just didnt' work for me like I had hoped.
Glad I did it though. No regrets and I know I did what I could to keep my uterus, it just wasn't meant to be.
And that's ok.
Hugs to you!
Unread 02-11-2006, 07:57 AM
20 cm Fibroid and what the doctor said today!

Tilei, your fibroid is almost double the size of mine and my doc did NOT want to wait to remove it. It was sitting on my colon, which was causing severe constipation. It was also causing some bladder problems, which were unknown to me,and now my bladder is trying to "get back into the program." I completely understand your isssue with taking time off from work/lack of income/lack of insurance. I am self employed and will have no income while I am off for 6 weeks (although I may return at 4 weeks because of that). You must do what is best for your body and the other organs. The insurance and money issues will all work out in the end, but the longer you prolong it, the bigger it will get, and the more complicated the procedure can become...
Unread 02-11-2006, 09:07 AM
Thank you!

Ladies, reading this has given me hope. I was diagnosed with 2 10cm fibroids (1 inside, 1 outside) just last week. The first words out of the gyn's mouth were "the uterus must be removed." I told her that at 41 I wasn't ready for that option and I would investigate other possibilities. I have no symptoms and the internist I've been going to doesn't recommend surgery at this point, even after seeing the MRI.

Options, I love options!!

Unread 02-11-2006, 10:09 AM
20 cm Fibroid and what the doctor said today!

For those investigating UFE who do not frequent the Yahoo EMBO board, here is some further information about UFE for large fibroids. This information was posted there by Dr. Robert Worthington-Kirsch who is a UFE pioneer and has done over 2000 of these procedures. Having had UFE myself, I think I would want a very experienced IR if I had a potentially complicated case - like really large fibroids. Mine was "only" about 10cm.

"Some IRs will not embolize any uterus over 20 weeks (the level of the navel). I have successfully embolized (technical success with good clinical relief of symptoms and patient needing no further therapy) women with uteri up to term size. The data suggest that there is a SLIGHT increase in risk of complications with bigger uteri/fibroids, and a SMALL decrease in the likelihood of good response. From my perspective it's largely a matter of discussing each woman's individual situation with her and making sure that each woman has realistsic expectations for her own case."
Unread 02-14-2006, 09:13 AM
20 cm Fibroid and what the doctor said today!

Tilei wrote: I explained that I wasn't ready for the tradeoffs that a hysto can lead too. He understood what I was saying. I'll know in two weeks if I am eligble, plus he directed me to a community service provided by the hospital for people without insurance and after he did the pelvic exam to check size and orientation of the fibroid felt my need to take care of this was more than symptomatic. He thinks it is pinching my right kidney and may be the cause of some other issues I am dealing with, thereby I may be eligible for some free services from the hospital. And surprise, my seizures may be related to the kidney being pinched and I may not have real epilepsy! Which the seizures have only become evident since the growth of the fibroid.

My friend is suffering with onset seizures and the epilepsy medication is not working for her. I am going to ask if she has fibroids. I am so glad that you do not have epilepsy and that your doctor is batting for you. What a wonderful feeling knowing that you are cared for. Good luck with everything.
Unread 02-14-2006, 10:58 AM
20 cm Fibroid and what the doctor said today!

had 2 large painful fibriods removed 12 days ago doing ok glad too be rid of huge tummy

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