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MRI guided ultrasound, Mifepristone, Lupron- help! Update) MRI guided ultrasound, Mifepristone, Lupron- help! Update)

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  #1  
Unread 12-07-2012, 07:15 PM
MRI guided ultrasound, Mifepristone, Lupron- help! Update)

Hi all!

I am a newbie and hope I'm posting on the correct forum. I just had an MRI which showed that I have 2 fibroids that have doubled in size from 2008. One is 10 cm- intramural and another 8 cm subserol (sp?). One is "severely compressing" the bladder against the anterior abdominal wall. I have one other fibroid on the fundus (3cm), and it hasn't changed in size from 2008.

I really don't feel too badly- a bit of pressure and getting up at night to pee.

The only reason I had this MRI, is because my primary care doctor felt something in the pelvic area. And I asked my gyn to order and MRI.

Anyway, it all sounds scary- these huge things inside of me.

I have an appointment at the fibroid center at Johns Hopkins, so I am hoping they can give me some options. Am hoping I'm a candidate for MRI focused ultrasound. Perhaps will have to shrink the fibroids a bit with Lupron. I've been researching all this for weeks now.

Would like to try mifepristone- wondering if I could get it if I travelled to a country where it is approved. Was looking all over for clinical trials here in the U.S.

Well, this is longer than I thought, but I'd appreciate any feedback on either the MRI focused ultrasound, Lupron, or obtaining Mifepristone (RU-486).

Am a bit overwhelmed and scared. Also, I just turned 48- have no idea if I'm close to menopause. Periods are normal- although cycle has shortened to 25 days. I've read that shortening cycles are indicative of perimenopause.

Thanks in advance for any feedback!
Last edited by mirii; Today at 08:17 PM. Reason: to add more information
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  #2  
Unread 01-03-2013, 01:40 PM
LSH, Mrgfus anxious

I hope someone responds. Am feeling anxious about what is going to happen.

I saw fibroid specialist and Johns Hopkins, and she said b/c of the nature of my fibroids I am not a candidate for UFE or Mrgfus; however, I may be a candidate for Mrgfus at another center. Hopkins will not do Mrgfus for more than one fibroid. She also said my one fibroid was pendunculated (on a stalk). This surprised me because it was not noted as such on the radiologist report.

She said she could do a Laparoscopic hysterectomy that would be outpatient. I'd be home the same day, could keep my cervix and ovaries, and only be on narcotics for approx. 2days. Seems to good to be true.

Have already set up an appt for another opinion at another highly respected fibroid center, and also am sending my MRI results to the Mrfgus center that does multiple fibroids to see if I'm a candidate.

She also said that the researcher that did the study on Vitamin D and EGCG (green tea extract) is a quack. How do quacks get published in major medical journals on pubmed?

Also, she said that I could do watchful waiting and monitor them yearly. I am 48.

Two large fibroids that have doubled in size since 2008. Virtually no symptoms except frequent urination at times.

I REALLY HOPE TO GET SOME RESPONSES. Last time I posted, it seemed lilke I got lost in the shuffle.

Feeling a bit shocked as I just had my appointment today.

Just needed to vent and hope to get some responses. anyone else have laparascopic hysterectomy outpatient.

Many thanks in advance. I've met some lovely ladies on this site. x
  #3  
Unread 01-03-2013, 02:36 PM
Re: LSH, Mrgfus anxious



  Quote:
Originally Posted by mirii View Post
Have already set up an appt for another opinion at another highly respected fibroid center, and also am sending my MRI results to the Mrfgus center that does multiple fibroids to see if I'm a candidate.
I think a second opinion is a good idea and could help you with your decision.

  Quote:
She also said that the researcher that did the study on Vitamin D and EGCG (green tea extract) is a quack. How do quacks get published in major medical journals on pubmed?
More easily than you think. The doctor who suggested autism was caused by vaccinations has since had all of his published material pulled as his research and data was flawed. That is why it is a good idea to try to correlate any information with another researcher and doctor to help authenticate the data. I am not agreeing or disagreeing with your doctor, instead I would suggest you look for collaboration of any information to determine if it is truly authentic or not. Also, read the information carefully and checking out the actual studies themselves to see if they look reliable can help you determine how much emphasis to put on someone's conclusion. For instance, a study which only included a tiny number of persons with unlimited variables may not be as valuable as one that included thousands of people with more carefully controlled variables.

  Quote:
I REALLY HOPE TO GET SOME RESPONSES. Last time I posted, it seemed lilke I got lost in the shuffle.
I apology that you were lost in the shuffle. I know that my personal life has kept me off the boards much of the last month. December can be such a hectic time of year and then to have health issues involved is so frustrating. My goes out to you.

One thing I can suggest that might help with this decision--sit down and talk to your GP. Your GP won't be able to perform any of the options, but could help you look at each option from the perspective of someone who treats you from a more whole body perspective. Your GP may also be able to refer you to other specialists.

I wish you well and hope you are able to find the right solution and physician for you!

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  #4  
Unread 01-03-2013, 05:10 PM
Re: MRI guided ultrasound, Mifepristone, Lupron- help! Update)

Hi Weiser,

Thank you for replying to my post. What you said about published research makes sense, I guess I always thought that if it was published in a respectable medical journal, that it would only be accepted if the research design was impeccable. That is a good idea about consulting with my GP. It seems like surgeons always want to cut, but I'll know more after getting a few more opinions. I am happy you responded. Happy New Year! x
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