From SF: 3 doctors, fibroid, adenomyosis, and yeah, a myo

February 4, 2004

Hi everyone,

This is my first post. After the surgery, my doctor asked if I have

always been bleeding heavily for years and always feeling tired. Well,

I admitted it's true. My first GYN always said that I was doing fine.

After all, women my age normally have heavy menstrual cycles. I am 46.

But she was wrong.

On 1/5 I started to bleed. On 1/12 my GYN could not see me and would

not return my calls, so I went to ER. My blood count was 8.7. I had an

ultrasound and a 6cm fibroid was found. I received prescriptions for

Provera and iron tablets and was sent home. The next day my GYN asked

about my ER experience and mentioned that she would not prescribed

Provera, but she could not see me for another 2 days. Desperation sets

in.

I continued to bleed, found a new GYN and saw her the next day. She

told me to toss out Provera and prescribed two different types of

hormone that helped slowing down the bleeding. Her recommendation for

my fibroid: hysterectomy. Yup, the fibroid is just too big. She did

another ultrasound and said it's 4 times my uterus.

The next many days I frantically researched about fibroids and types of

treatment and found this group. I've learned so much from all of you.

It's an amazing wealth of info. I wrote everything down but still could

not find a skilled surgeon, especially one that can see me within a week

or two, as I am still bleeding. I wasn't sure if I needed a blood

transfusion. I had all the symptoms Ku described. I ate everything

people told me to eat: broccoli, parsley, beef, even liver. Maybe I

should call it quit and go ahead with the hyst.

Enter Pat. She scheduled the SF meeting at the right moment.

Pat, do you know that you may have very well saved me from a

hysterectomy? Pearl and Lori gave me names of their doctors at the

meeting. I saw Dr. Morey Filler on Wed 1/28. My bleeding was getting

heavy again.

Dr. Filler complained that I was hemorrhaging and performed a D&C (why

didn't the ER doctor and my 2nd GYN do this? I would have asked them to

if I knew of such procedure). The bleeding stopped until my surgery.

One of the options Dr. Filler gave me was hysterectomy, but I demanded

myomectomy and kept telling him that under no circumstances would I

accept a hysterectomy. I knew he was a good surgeon but had to ask if

he ever have to convert a myo to a hyst. Dr. Filler's answer: never!

He kept telling he would take care of me (yes, he felt sorry for me). I

was in tears and begged for a surgery the next day. He agreed and ran

out to deliver a baby after making sure that I have my blood test done

that afternoon. He called me in the evening to tell me that he reviewed

my blood test and that I did not need a blood transfusion after all.

My myo was a success. The hospital staff and nurses were superb. Dr.

Filler removed a peach-size fibroid and, after a confirmation from a

pathologist, also found and treated my adenomyosis problem! He removed

the part of the uterus that contained the bulk of the disease. So if

any expert tells you that total hysterectomy is " the only definitive

treatment for adenomyosis " , run from them.

It's February now, my one month of bleeding is over. My years of heavy

menstrual cycle ended too. Dr. Filler just called and yes, I am

recovering splendidly.

My advice to other fibroidians: find some good doctors for a 2nd or 3rd

opinion or more until you feel comfortable. And if your myo involves an

incision like mine, make sure to keep the area totally, totally dry.

Use a dryer after shower if need to.

Jackie

February 5, 2004

Jackie,

I am so glad to hear a story like yours. Also glad your recovery is going

well and you are finished with the heavy periods. You are right, you have to

get 2 or 3 opinions and do what is right for you. I, too found this board 2 yrs

ago and heard about UAE and finally ended up having one 11/02. I have had

good success. My internist and gyn never would have mentioned UAE. I did all

my homework, got my own referral to the IR and got the UAE. I was very glad I

took my own health into my own hands.

I know a woman who just had a partial hys for fibroids. She was frightened

and the doc scared her into doing the hys right away. I talked to her and

tried to enlighten her about myo or UAE, but she was so scared, she ran to the

hosp for the hys. I felt bad, but there was nothing I could do.

Anyway, take care and take it easy.

February 6, 2004

Pat, do you know that you may have very well saved me from a

> hysterectomy? Pearl and Lori gave me names of their doctors at the

> meeting.

Jackie:

I'm really glad to hear from you on list. I am SO happy you managed

to get the treatment you wanted and to avoid the hysterectomy you

didn't want. It wasn't just me that " saved you from hysterectomy, " –

it was this list & NUFF which sponsors this list & Carla Dionne who

started NUFF and moderates this list and all the wonderful women

who've supported each other here -- especially the other ladies who

came to the S.F. gathering – most particularly Lori & Pearl who were

both post-myo and able to share names of their myo doctors (and

other docs who'd been recommended to them) with you, etc., etc.,

It really was a pleasure to meet you & all of the other ladies on

the 25th & what an amazing surprise to have learned from you only 8

days later, that you'd found a doc, had surgery & were at home

recovering!! I hope your recovery is continuing to progress

nicely. I hope we'll continue to hear from you on this list. I

hope you'll help support other ladies who are going through their

own fibroids ordeals, I hope you'll educate anyone else you can

about fibroids & treatment options.

For me, this adds even more validity to the idea of getting fibroid

women to meet face-to-face, in addition to on-line. I found the

mixture of women at the S.F. gathering – those who had treated (both

by myo and by UFE) and those who were still seeking treatment and

trying to make treatment decisions to be dynamic, exciting and

reassuring.

I hope that many more of the ladies here will sign up for the future

meet-ups. Here's the meet-ups link again.

http://uterinefibroids.meetup.com/ - you need to sign-up in order

to get be included & we need 5 people in the SAME area signed-up for

a meet-up to happen there.

Hoping to meet more of the LOL's (ladies of the list) soon.

Pat

February 6, 2004

Hi Pat,

Yes, the wonderful women in this group have done so much for people like

me. When I told my sister and friends that my doctor suggested

hysterectomy. They told me to go ahead with it. Little did we know

then! Now I am educating my friends, my sister, and my neighbors about

fibroid and hyst and treatment options. Carla Dionne and women like you

have done wonders, but like you said, we need to educate more people.

Even my wonderfully skilled doctor, I still need to ask him why

hysterectomy was the first choice on his list for me. He may need to

hear a patient's view.

I am now applying vitamin E on my incision and still need to sign up for

future meet-ups.

Jackie

February 6, 2004