Re: Kathy: Addressing Adenomyosis w/e & Sonja's stories

[Guest guest]

Kathy

I was diagnosed with adenomyosis following my first

myo in April of 2003. I did a boatload of research.

I was losing so much blood a day that when tested on

Friday I had a hemo of 10 and was at 7 by Monday. I

was given a treatment plan that stated a hysterectomy

in a year or two IF I stayed on Lupron. To make a

frustrating story short in August I found out that my

MRI with a T2 differential showed NO SIGNS of

Adenomyosis but what I had was a tumor. When I went

to a new Doc he said it didn't matter if it was adeno

or tumor it was threatening my life and when he

removed it it was an odd fibroid. What the first Doc

thought was adeno was damaged muscle tissue.

If you want my research I will share it with you and

before you make a choice be aware that adeno is

difficult to be identified. Choose carefully.

e

--- ARomaWithAView@... wrote:

It's just consistent with how very, very difficult it is to

actually diagnose adenomyosis.

I've read that only 10-20% of adenomyosis cases are

actually able to be

diagnosed PREoperatively.

[Guest guest]

Roma,

You asked how my adeno was diagnosed. I have had an ultrasound

w/transvaginal, CT scan and MRI. Most recently, I underwent a D&C to

address the endometrial hyperplasia and the gyn also did a laparoscopy

and hysteroscopy at that time to take a look. Other than the enlarged

uterus, everything looked healthy, inside and outside the uterus. The

MRI report indicated " appearance of the uterus is that of diffuse

adenomyosis " and " no identified uterine fibroids " .

Your're right about " waiting and watching " . If the hyperplasia checks

out okay, I will have that option. I was told by my doctors that the

uterus will continue to grow (at 14 weeks now). It is already putting

pressure on my bladder and rectum. I will factor that in, of course.

Both doctors recommended hist, (based on their diagnosis of possible

fibroids and/or adeno) with the gyn adding that I should not wait more

than 4 weeks to decide. Well, it's been about 4 weeks since then, and I

now realize that I don't have to decide so quickly and that there are

options with hists to consider if and when I go there. Recommending a

hist based on possible conditions is ridiculous!

I will check into UAE--earlier, it was mentioned that there are doctors

in NY investigating that course of treatment, also.

Thank you very much for your input!

Kathy

[Guest guest]

e,

Thanks for the info! I am feeling pretty confident about the diagnosis,

as it is the result of an MRI w/T2 sequences. My own gyn refused to do

the MRI that was requested by Dr. Toaff (you're probably familiar w/him

from your research), who has a vast amount of experience with adeno. Dr.

Toaff was providing a second opinion at my request. I had to go back to

my family practioner to get the MRI scheduled.

I have done considerable research, as well. If it's not too much

trouble, I would like an opportunity to see what you came up with, in the

event that you have found info I did not.

Also, I have mentioned this once before and only one person responded

that she recognized the name. Is there anyone out there who has had any

personal experience with Dr. Toaff of Bryn Mawr, PA? Can anyone

tell me how to go about learning more about him? I have been able to

verify his medical license and board certification and have spoken with

him, but would need to know much more before choosing treatment by him.

He performs " adenomyosis resection " . He says he is the one who developed

the procedure and is the only one who does it. I love the potential

option, but am treading very cautiously.

Kathy

[Guest guest]

Good point. Dr. Toaff did say to me that although I consider myself

" symptom free " , I would probably notice a significant improvement in the

way I feel after removal of the adeno, because it is a disease and my

body is having to deal with it.

[Guest guest]

> He performs " adenomyosis resection " . He says he is the one who developed

the procedure and is the only one who does it. I love the potential

option, but am treading very cautiously.

Dr. Toaff is NOT the only doc who does surgical resection of adenomyosis. Not

by a long shot. Many docs who routinely perform myomectomies will also resect

adenomyosis, if necessary or preferred by the patient over hysterectomy.

Any doc who says he is the ONLY doc to do any given procedure...is to be taken

with a HUGE grain of salt....and questioned heavily as to why that is,

precisely...in this case, it simply sounds as though Toaff is either ignorant

that other gyns do this as well OR he was playing/preying on your own lack of

knowledge.....Judge for yourself....he's been around a very, very long time....

Carla