2 weeks post-myo

August 12, 2002

Hi all,

I've been mostly lurking on this list for several months...soaking up

lots of information but not able to share much because of feeling so

incredibly wiped out from the effects of fibroids and anemia!

Anyway, I'm 39 years old, married with 2 kids, and just had a

myomectomy on July 26th. I had a spinal for anesthesia, had surgery

Friday afternoon, was up and walking Saturday morning, and went home

Sunday morning.

My u/s showed what looked like 2 fibroids, one 3.7 cm and the other

6.5 cm. In actuality they were one big mass. My doc said it either

could've been that way all along and just the bulges on the ends

showed clearly on u/s...or it could be that two fibroids sort of grew

together as they met. Anyway, it came out cleanly and she said that

the way it was protruding in the uterine lining it was no wonder I'd

been bleeding so much.

I started to write a LONG message detailing my original symptoms,

diagnosis, finding a doctor, making the decision on myo, recovery,

etc, etc, etc... But it got so long and windy I decided not to

subject y'all to it!

Anyway, before surgery it helped me A LOT to read messages from other

women who had successful myos (I guess I really don't know that mine

is successful until I have a period, but I feel good so far) so I

thought I'd offer to answer any questions any of you might have.

It's been a long process to find and doctor and to make the decision

and I know information can help. Also, if any of you are in the

Piedmont Triad area of North Carolina I can recommend my GYN...she

does myos, but is also very supportive of UAE.

August 12, 2002

, thanks for your post. Could you go into some detail on your

search for a doctor? I think that many of us are searching for the " right

one " and are interested in hearing how you came to find a satisfactory one.

Thanks,

kisha

2 weeks post-myo

Hi all,

I've been mostly lurking on this list for several months...soaking up

lots of information but not able to share much because of feeling so

incredibly wiped out from the effects of fibroids and anemia!

Anyway, I'm 39 years old, married with 2 kids, and just had a

myomectomy on July 26th. I had a spinal for anesthesia, had surgery

Friday afternoon, was up and walking Saturday morning, and went home

Sunday morning.

My u/s showed what looked like 2 fibroids, one 3.7 cm and the other

6.5 cm. In actuality they were one big mass. My doc said it either

could've been that way all along and just the bulges on the ends

showed clearly on u/s...or it could be that two fibroids sort of grew

together as they met. Anyway, it came out cleanly and she said that

the way it was protruding in the uterine lining it was no wonder I'd

been bleeding so much.

I started to write a LONG message detailing my original symptoms,

diagnosis, finding a doctor, making the decision on myo, recovery,

etc, etc, etc... But it got so long and windy I decided not to

subject y'all to it!

Anyway, before surgery it helped me A LOT to read messages from other

women who had successful myos (I guess I really don't know that mine

is successful until I have a period, but I feel good so far) so I

thought I'd offer to answer any questions any of you might have.

It's been a long process to find and doctor and to make the decision

and I know information can help. Also, if any of you are in the

Piedmont Triad area of North Carolina I can recommend my GYN...she

does myos, but is also very supportive of UAE.

August 13, 2002

Kisha, I'm happy to share and I hope it helps...but the problem with

giving advice about finding a doctor is that everyone's situation is

so different. Insurance companies have so much control of our

decisions sometimes, and sometimes also the doctor/patient

relationship is based on personality. What feels like a good

doctor/patient fit to you might be all wrong for me.

But, FWIW, here's how it worked for me. I knew I had at least one

fibroid for 12 years because the OB who delivered my daughter found

it during my post-natal exam. It was tiny then and she and I agreed

it was nothing to worry about at that point. Over the years I

gradually developed heavier and heavier periods, but it wasn't till

after my son was born in July of 2001 that it got to the point where

I knew something *had* to be done.

So I started with the OB who had delivered my son. I had to have a

c-section and during the operation this doc had said something along

the lines of " Hey, that's one heck of a fibroid in there! " This led

me to believe he was aware I had a fibroid. His immediate

response to my bleeding problem was to declare that, because I am

fat, I was annovulatory and this was " breakthrough bleeding " , it

couldn't have anything to do with fibroids. He seemed surprised that

I didn't agree because surely I had been dealing with this for years,

right? Uh, nope, Doctor. In fact I had been charting my cycles for

years and knew that I was quite definitely ovulatory (Hey, I had a

two-month-old son to prove I ovulated at least once!) and my cycles,

though quite heavy, had never been like this before.

His " solution " was to cycle me on Provera every month, and he seemed

sure this would solve the problem. (BTW, he was a skilled OB, but he

hadn't listened to me real well during pregnancy either.) The

Provera didn't help at all, so I knew I had to find someone who knew

what they were doing.

My next step was to go see my family practice doctor. I had to see

her about another issue anyway, and at that point my insurance

required a referral from her for me to see any kind of specialist.

She is affiliated with the medical school where my husband works and

I wanted to get referred to someone in their GYN department. Well,

she wanted to try treating me herself instead. She's a great family

physician and a good listener, but she's not a GYN and she was way

out of her league. The options she offered me were: 1. referral to

an IR, but with the stipulation that I would have my tubes tied

before UAE. 2. Aygestin on a long-term basis (which she claimed

would allow my hormones to cycle normally but just reduce the

bleeding) 3. A Mirena IUD (I read the literature on this one and it

said it was contraindicated for women with fibroids protruding into

the uterine lining) 4. Lupron on a long-term basis (when I told her

I thought it was only for short-term she seemed surprised)

When I met with her she had a resident with her who had just done a

rotation through the GYN department. I asked the resident if anyone

over there was doing myos and she said " no one there right now " was.

I knew there had been a couple of positions open that hadn't been

filled yet, so I wondered if one of the docs who had left had been

their myo specialist. At this point we also got new insurance which

allowed me to see any specialist in the network without a referral,

so I no longer had to rely on my family practice doc for that.

Since this doc wasn't helping much, though she was very sympathetic

and did seem to realize that something needed to be done, I decided

to contact the IR at the school who does UAES directly. So I emailed

him and asked him some questions about UAE. I also asked him if

there were any GYNs he worked with on a regular basis who were

supportive of UAE. He answered my questions promptly, and told me he

really liked working with a particular GYN who had just left the med

school to set up a private practice. I also found out that he didn't

expect me to get my tubes tied before UAE, but he did expect all of

his UAE patients to be very aware that there were no fertility

guarantees after the procedure. He also believes that it may come

out eventually in studies that pregnancy after UAE is dangerous for

some women.

I called up this GYN's office and got an appointment right away. She

was really great to talk to, very respectful of the research I had

done and also of my own knowledge of my body. She's also the first

doctor I had dealt with who didn't want a " pad count " ...you know how

when you say you're bleeding heavily and they insist on quantifying

it with how many pads per hour you soak through? I told her I had

very heavy bleeding, she asked if it interfered with my quality of

life, I told her I couldn't leave the house for several days a

month....and she was sympathetic and agreed that something needed to

be done.

We talked about UAE a lot. She agrees with the IR that it's not for

women who want to leave their pregnancy options open. She said the

whole issue of blood flow to the uterus after UAE just hasn't been

studied enough to know whether pregnancy is always possible and

whether it is ever dangerous post-UAE. She also mentioned the big

question of ovarian failure. She's very much in favor of UAE as a

less invasive treatment option, but she insisted that I would need to

spend some time thinking and meditating on my options and how I felt

about my fertility before making a final decision. Then we talked

about myomectomy, and I found out that it is indeed one of the things

she considers to be her speciality. She gave me a lot of information

about both options and sent me home to think; she wouldn't let me

make any decisions right then and there.

Anyway, that's the journey I took to finding this doctor. I believe

at this point that she will be my GYN from now on. I like her

approach to healthcare and as I head into my 40's and look forward to

menopausal issues I particularly want someone I can talk to and who

will listen to me.

If I had to search for a doctor again I think I would again contact

an IR first and ask which GYNs they like to work with. For one

thing, if UAE is an option you're considering it seems like a good

idea to have a GYN lined up who is supportive of UAE and prepared to

treat any problems you have afterward. And, IMO, a GYN who's open to

alternatives like UAE is probably not a hysterectomy-only person, and

may be skilled in myomectomy or able to refer you to someone who is.

Hope this helps!

>, thanks for your post. Could you go into some detail on your

>search for a doctor? I think that many of us are searching for the " right

>one " and are interested in hearing how you came to find a satisfactory one.

>

August 14, 2002

Kisha, with regards to finding a doctor, I thought I'd share my

experience. I have four large fibroids and pretty much knew they

needed to come out soon if I ever wanted to have children. I live in

Houston, so I was being referred to a ton of OB/Gyn's by friends, but

no one knew how good they were with myomectomies. So, I called the

Directors of Nursing on the OB/Gyn floors at Houston's top 6

hospitals and asked if they were to have to have an abdominal myo

done, who would they want doing it. I found them to be very nice and

for the most part, willing to share information. They gave me the

names of some excellect doctors. These nurses know who the good ones

are out there. I ended up meeting with 5 and selected one from that

list. I was referred to him by 2 friends too, so that made me feel

that much better about my decision.

Hope my story helps you. Good luck with your search!

August 14, 2002

: Thanks so much for walking us through your journey. While we

all have different situations and personalities, hearing the questions,

concerns, and steps that were taken by others can sometimes give us ideas

about questions we should ask, answers we should/shouldn't accept, different

approaches we can use, and areas of concern (or opportunity) that we may not

even have thought of.

I have appointments with two gyns and an RE next week (taking the parallel

approach rather than the serial since I have a PPO that allows me to go to

any doctor in network without a referral. This way I hope to quickly narrow

down to a single doctor, make the surgical decision, and get the surgery

scheduled so that I can have my fibroids removed with uterus intact before

the end of the year.

Thanks again!

Kisha

RE: 2 weeks post-myo