My Newbie Advice

[Guest guest]

My newbie advice:

1. READ, READ, READ – everything you can get your hands on about fibroids.

A. Start with Carla Dionne’s book “Sex, Lies and the Truth About Uterine

Fibroids . . .” and Drs Goodwin & Broder’s book “What Your Doctor May Not

Tell You About Fibroids . . .” -- You'll get comprehensive information from

reading these publications.

B. Stick with this list and not just the current posts. Read through the

archives of this list – not beginning to end – but plug in words of interest

to you in the search box and look for messages that might be pertinent/of

interest to you. --- The current postings are just a snapshot of what’s

available here. There has been a lot of wisdom shared on this list over the

last 5 years & the archives make the experiences & knowledge of those no

longer here available. - The photos and FAQ's and databases and other

features connected to this list-group are also interesting -- check all that

stuff out.

C. Become familiar with all the information on the NUFF website

http://www.nuff.org/ & with the other websites which NUFF gives links to.

– Use the web freely, but remember you can’t believe everything you read –

evaluate what’s real and what’s not. Constantly ask, what’s the EVIDENCE

for this??

2. YOU are the ONLY person who can make the right decision for you.

You have to educate yourself in order to be able to do this. – Remember, no

doctor is likely to take hours and hours and hours to truly educate you. In

order to genuinely be fully informed, you’re going to have to educate

yourself.

Learn about the RISKS and BENEFITS of every available treatment and WEIGH

them all against each other from your own personal perspective. Is it worth

risking A, B, and C, and order to get X, Y and Z? -- There are always some

risks – you have to figure out which ones you are willing to take under what

circumstances in exchange for what likely benefits.

3. You are free to consult with other doctors – as many others as it takes

-- & to insist on opinions from doctors CAPABLE of offering you all the

options you might be interested in pursuing. Remember, that when a doctor

offers advice – it is often limited to what THAT particular doctor is

capable of offering.

You are entitled to know WHY doctors offer the advice they do. You are

entitled to be treated like an intelligent, thinking human being. Insist on

it.

4. Do not accept the notion that fibroids are no big deal. They can be a

big deal. Anything that has a big impact on your life IS a big deal. You

are entitled to expect others around you to accept the fact that your

fibroids ARE a big deal. You are entitled to expect your doctors to act

like your fibroids are a BIG deal for you. You should not be expected to go

around being miserable because it isn't a big deal to someone else.

5. Do NOT allow anyone to make you think fibroids might turn into cancer.

That’s a scare-tactic and an “old doctor’s tale.” Fibroids are fibroids.

They continue to be fibroids. They don’t turn into anything else. If

you’re worried about differentiating sarcoma from fibroids – see Dr.

’s post on this list #33624 & bring that to the attention of your

doctors.

6. Hysterectomy is usually not necessary for fibroids. It is ONE treatment

for fibroids. But, the cases where there is only one possible treatment

option are unusual. Anyone telling you there is only one treatment option –

especially if it’s hysterectomy – is probably VERY WRONG – but you’re not

likely to convince him/her of that & you’re taking a big risk if you try to

stick with that doc & get a different treatment. Women who CHOOSE

hysterectomy should do so only after being fully informed and being actually

OFFERED a full range of choices – not because they were offered nothing

else.

7. Remember your health is important – if it costs a bit more money to get

the care you need, try to find that money somehow. Our families undoubtedly

all have other needs the money could go for – but without us there and

healthy and happy, those other needs are almost irrelevant to them as well

as to us.

8. Women who went ahead of you have helped to ease your way – including

women on this list. Women who will follow us could use our help too.

Do whatever you can to educate those around you about fibroids and treatment

options. Don’t let it be a “secret” disease. It is common, and everyone

should know about fibroids. Others you know have dealt with this problem

before you & more will deal with it after you. If you don’t talk and they

don’t talk, you’ll never be able to support one another in getting through

this. I am constantly amazed at how many women I know tell me about their

fibroid experiences ONLY after I mention mine. I am constantly amazed by

how many women I know have found out they had fibroids only after they ASKED

– and they would have never known to ask if someone else hadn’t talked about

their own fibroids.

If you leave a doctor’s practice because you are not offered all treatment

options, or choose not to use a doctor because of attitude or lack of

treatment choices, let that doctor know WHY you’ve left or chosen someone

else – hopefully as a result, future patients will get better treatment.

You don’t need to be nasty about it. It doesn’t need to be done in person –

a written note would be fine.

Work to support the Uterine Fibroids Research and Education Act, pending

before Congress.

Donate what you can to NUFF.

etc., etc., etc.,

Pat

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