Self-embolization?/necrobiosis

[Guest guest]

Something quite bizarre has just happened to me. I had a 13 cm. intramural

fibroid and after several gynecologists told me I had to have a

hysterectomy, I learned about UAE and found the one interventional

radiologist in my country (Switzerland) who does this procedure. I had a

consultation with him in June and he said that because of my age - 51- I

should wait , as I probably would soon go into the menopause and the fibroid

would shrink naturally. Since June I have been skipping periods and those I

had were either very heavy or amazingly light. The radiologist told me about

a month ago that my irregular periods showed I was indeed close to menopause

and I should just wait it out. Then three weeks ago I began to hemorrhage

profusely. I passed huge clots, some the size of what I imagine the

afterbirth of a cow would be. I stayed away from all gynecologists and went

to a doctor of internal med. who does acupuncture and she gave me something

to stop the bleeding and told me to contact the radiologist. My level of

iron was so low that it was found I have severe anemia from the bleeding and

after a week of such bleeding, I was given a month off from work. (2 weeks

plus Xmas).

I had decided that I would either have an UAE in Switzerland, if the

radiologist was willing , or get an appointment as soon as possible in

England to have focused ultrasound surgery.

I had the MRI here in Switzerland yesterday on 15 December. When I met with

the radiologist yesterday afternoon he told me he had GOOD NEWS for me. I

thought he would tell me he could do the embolisation the following day.

Instead, he told me that I had done my own embolisation. (no knitting

needles!). He explained that my huge fibroid had

died, that is it was in a state of necrobiosis and that the enormous clots I

had passed had been the fibroid. He said more of it would be expelled over

the next few months and I shouldn't get scared. He said the feelings I had

gotten like contractions were what one sometimes feels after an

embolization. He said I was really smart not to have gone to the Emergency

(A & E) or to a gynecologist, as I would surely have wound up with a

hysterectomy in this country. He asked if I had had a fever and if I had

taken codeine or something for the pain. I told him no - that I had gone to

work the first week. He was pretty amazed. He gave me some pills to slow the

bleeding if I pass any more huge clots.

Have you ever heard of this happening before? I can't believe this is real.

How did I give myself an auto-embolisation? Am I really out of danger? I

read about red degeneration, but that is for pregnant women with fibroids.

What happened is called necrobiosis and I want to know if anyone else has

ever experience this and what I should expect to experience now. I am still

anemic and I am scared about what will happen during my next period, as he

said I might expel necrotic tissue for a while. Please tell me if you have

ever heard of something such as this, as nothing I have read in the

literature explains this and I had no idea this could happen. I still can't

believe it is true.

Thanks,

.Durham@...

[Guest guest]

Red degeneration is the same thing as necrobiosis. Search the

internet using these key words:

necrobiosis leiomyoma

I hope that it has resolved itself. That must have been frightening

for you.

Hugs,

Ann

What happened is called necrobiosis and I want to know if anyone else

has ever experience this and what I should expect to experience now. I

am still anemic and I am scared about what will happen during my next

period, as he said I might expel necrotic tissue for a while.

[Guest guest]

,

I'm sorry I missed your first message

on 12/1003 43381--

I think it's time to tightly grab

your poles and ski

down this unusual slope very

cautiously getting

more information, diagnostics,

and having a physician team approach.

I don't agree with your IR that you

didn't see a gynecologist or present to ER---

Best case scenario, yes is what your IR

described but what about a worst case scenario?

ie, where you bleed

profusely again and need blood transfusion

/or there is still necrotic fibroid

tissue to be passed and it becomes

blocked at the cervix and unable to be

expulsed? You may need to be seen

by a gynecologist to perform a visual

hysteroscopy and remove material,

view the tissue, send a sample to

pathology and monitor the process.

Now is the time for the IR and Gyne

to work together with you, with your

perogatives in mind, but flexible enough

in case you get over your head in this

situation.

Are there any cities in France or Germany

close by where you could get a consult

from more specialized/sympathetic gynes

willing to work with you?

Are you taking as much iron as you can/eating

iron-rich foods? Resting. Family or friends

available to you for support and assistance

at this time? Can you get a relative, friend

to go with you to see a gyne?

Is the Swiss Gynecological community that

estranged from the Interventional Radiology

community? If you get through this health

episode, overcome your anemia, I think I'd

contact the media about your situation.

Have you already checked the USA's National Library

of Medicine? (try google.com, type in PubMed, click

the PubMed link posted by google.

At the Pubmed link, type: Necrobiosis of

uterine leiomyoma

Just concerned here and want to see you

get to the bottom of this slope, safely, .

Marsha

> What happened is called necrobiosis and I want to know if anyone

else has ever experience this and what I should expect to experience

now. I am still anemic and I am scared about what will happen during

my next period, as he said I might expel necrotic tissue for a while.