Re: New Member of Board - I Have Questions...

[Guest guest]

Annette

Your nurse Practitioner doesn't know what she's talking about so

don't take her word for it! Your fibroid is not to big for

treatment! When you go to the gyno, be prepared for the same type

of ignorance. Most gyno's will recommend hysterectomy right off the

bat also!!! Some know of UFE's but a lot are misinformed or don't

care to learn that this is a very good alternative! (Uterine

Fibroid Imbolization)

I just had a UFE on 1/30 with so much support from the embo

group. Consider joining that group for more information. Anyway,

so many women have 10 cm fibroids including myself! My IR said that

his limit is 17 cm!!! You really don't want yours to get any

bigger. It sounds as if it is blocking your bladder and bowls like

mine did. Keep researching. So many women have had great results

with the UFE. I think its a great alternative. but you need to

exhaust all your possibilities.. Jen

>

I asked the nurse practitioner about embolization,

but she said that was only done with smaller fibroids.

[Guest guest]

Hi Annette,

Welcome to the board!

I have a large fibroid on the back of my uterus on the outside that

wasn't detected until it was the size of a grapefruit. I have the

urge to urinate often (I always attributed it to having a small

bladder but maybe it was really the fibroid?) and have had similar

bowel issues to you, but only sporadically.

I am going in for a abdominal myo to have mine out on Thursday. The

main reason mine is being removed is that it adhered itself to my

bowel last year when I was 8 months pregnant, completely obstructing

my bowel in 2 places. My Dr. is afraid it will happen again with the

next baby so that is why I am having it out before I get pregnant

again.

I would recommend investigating all your options before having a

hysterectomy - I'm not overly familar with UAE but think that some

Drs. don't advise it perhaps because they aren't able to do it

themselves or aren't overly familiar with it. Maybe you could get a

second opinion from another Dr. more familiar with UAE.

Good Luck to you!

Cindy

> I had an ultrasound because my uterus felt enlarged (pelvic done by

> nurse practitioner). The ultrasound revealed a large 10 cm fibroid

on the outside of uterus, as well as many smaller ones. The nurse

> practitioner said I probably need a hysterectomy because of the

size of the fibroid, but I'm scheduled to see my OB-GYN (whom I've never

> met) in a week. I asked the nurse practitioner about embolization,

> but she said that was only done with smaller fibroids.

[Guest guest]

Hi Annette,

Yes, fibroids can cause the urinary/bowel/elimination problems you

have. Ask the ob/gyn to send you for tests to make sure your kidney

function is okay. Your fibroid is not too large for embolization.

Size isn't a factor anymore, but I'm not sure about embo with the

location of your fiboid, or the urgency of your elimation problems.

You would need to speak with an IR (interventional radiologist)

that's experienced with fibroids. Even if you need wind up needing

surgery, you would only need a myomectomy. It would be best to

consult with an RE (reproductive endocronologist) concerning

myomectomy. Most ob/gyn's aren't real experienced with myomectomy,

which is why they usually recommend hysterectomy. Women have had

myomectomy for fibroids just as large as yours. Let us know how your

appointment goes.

Gerri

> I've been experiencing increased need to urinate for the past

couple of years and for the past few months I sometimes can't urinate

upon waking, even though I need to go badly. Has anyone else

experienced this? Once I've had a bowel movement, then the urine is able to

come out. This problem happens intermittently.

There also seems to be something blocking my bowels, making it difficult to

void completely.

[Guest guest]

Thanks, Cindy!

I'm learning a lot by reading the messages from the board, but hardly have time

to read them all. I really appreciate you taking the time to answer me, it

helps. I'm going to continue to research this. My first appointment with the OB

Gyn is next week, so I'll see what she says.

Annette

littlepetuniablossom68 ldstevens@...> wrote:

I would recommend investigating all your options before having a

hysterectomy - I'm not overly familar with UAE but think that some

Drs. don't advise it perhaps because they aren't able to do it

themselves or aren't overly familiar with it. Maybe you could get a

second opinion from another Dr. more familiar with UAE.

[Guest guest]

Thanks, Cindy!

I'm learning a lot by reading the messages from the board, but hardly have time

to read them all. I really appreciate you taking the time to answer me, it

helps. I'm going to continue to research this. My first appointment with the OB

Gyn is next week, so I'll see what she says.

Annette

littlepetuniablossom68 ldstevens@...> wrote:

I would recommend investigating all your options before having a

hysterectomy - I'm not overly familar with UAE but think that some

Drs. don't advise it perhaps because they aren't able to do it

themselves or aren't overly familiar with it. Maybe you could get a

second opinion from another Dr. more familiar with UAE.

[Guest guest]

Thanks, Cindy!

I'm learning a lot by reading the messages from the board, but hardly have time

to read them all. I really appreciate you taking the time to answer me, it

helps. I'm going to continue to research this. My first appointment with the OB

Gyn is next week, so I'll see what she says.

Annette

littlepetuniablossom68 ldstevens@...> wrote:

I would recommend investigating all your options before having a

hysterectomy - I'm not overly familar with UAE but think that some

Drs. don't advise it perhaps because they aren't able to do it

themselves or aren't overly familiar with it. Maybe you could get a

second opinion from another Dr. more familiar with UAE.

[Guest guest]

Thanks, Jen!

I will keep researching and asking questions. How fast do the fibroids grow? Is

there any way to know how long I've had these? I first started having bladder

trouble about 2 years ago, so maybe that's when they got big enough to bother

me.

Annette

jenficks jenficks@...> wrote:

My IR said that his limit is 17 cm!!! You really don't want yours to get any

bigger. It sounds as if it is blocking your bladder and bowls like

mine did

[Guest guest]

Yes, Annette, fibroids MAY be causing your symptoms. I had what was

thought to be a 10 cm fibroid plus 1-2 5-7 cm fibroids. It turned out

when I had surgery that it was actually one very large (25 cm)

fibroid (uterus size of 5 mo. preg). Before that, I had frequent

urination and also sometimes some similar GI symptoms to yours. This

was complicated by previous diagnoses of GI inflammation and/or

irritable bowel syndrome. However, in my last colonoscopy, July this

past summer, there was no inflammation. But the doctor described it

as a " very difficult " colonoscopy because the fibroid was in the way.

He thought it very likely that this had something to do with my GI

symptoms.

For various reasons I chose myomectomy and not UAE -- while some

people are now saying that UAE can be done on even large fibroids, I

think 25 cm might be a bit too big even so! But it was NOT too big

for myomectomy -- that is, surgery to remove the fibroid(s) only,

rather than hysterectomy. So your nurse practitioner is not well

informed on this.

For constipation or difficult elimination that is made worse by

fibroids, I found extra fiber in the diet very helpful. I took, and

still take, 2 tablespoons of ground flaxseed and 1 tablespoon of

psyllium (or metamucil) every day.

Best of luck in your research,

Sunny

[Guest guest]

Thanks, Sunny, for the info. It helps to hear that others have had similar

symptoms.

Did the doctor pressure you to have a hysterectomy instead?

Annette

sun2dae sun2dae@...> wrote:

But it was NOT too big for myomectomy -- that is, surgery to remove the

fibroid(s) only, rather than hysterectomy.

[Guest guest]

I am 48 years old and have been " offered " hyserectomy almost all my

adult life. Started at age 22 after childbirth when I developed a

prolapsed bladder (cystocele). One " option " offered to me by my gyne

at the time was hysterectomy (which was very depressing to me as a

young, inexperienced woman) -- although hysterectomy generally

worsens such a condition (luckily my family doc, who had delivered my

daughter, advised me at the time to do nothing for a condition that

gave me no problems). A female gynecologist later " suggested "

hysterectomy when I was in my early 40s. She asked me when I was

going to get my bladder repaired since surgery when you are older and

the tissues aren't so healthy isn't as successful???!!! And by the

way, at the same time I should get a hysterectomy which would get rid

of the (then) small fibroid! All this for two conditions which had

minimal or no symptoms in my case!!! I then sought out and switched

to a gynecologist who counseled me to stay away from the operating

room -- if there's nothing wrong, don't fix it! I was very happy with

him for several years. We did ultrasounds every 6 mos. to track the

growth of the fibroid. However, when it got large enough so it was

putting pressure on my bladder and colon, he advised that

supracervical hysterectomy was the ONLY solution he would recommend

and that myomectomy would be IRRESPONSIBLE because of the potential

for blood loss. I was terribly disappointed in him and asked my

primary care doc for a referral for a second opinion. It was the

second opinion doc, an RE (actually at the same hospital) who offered

hysterectomy OR myomectomy and did an excellent job with my

myomectomy. I was able to look up numbers for both my regular gyne

and the RE I was referred to (there is a NYS website, it is listed in

the " Files " or " Database " section of this site) and found that my

regular gyne did 3 myos a year and the RE I was referred to did over

30. So maybe that has something to do with their differing advice.

Anyway, here I am at age 48 with everything healthy and intact, in

spite of much medical advice throughout my life.

This is a long but unfortunately typical story on this list. So, yes,

I have been pressured at different points all through my life to have

a hysterectomy. My advice is, first, to ask questions, ask questions,

ask questions. Do your own research!!! And, if there is not a life-

threatening emergency, you don't have to rush into anything. If you

find yourself disoriented and shocked by what a doctor tells you on

the spot and you aren't able to think of what to say, just say, " I'll

think about it!! " And then think, and ask questions, and do your

research so you'll know what to ask him/her later.

I am still considering a letter to my previous gynecologist, who took

good care of me until it came to making a decision. I would like him

to understand why many of us might consider an option besides

hysterectomy, and why I considered his advice ill-advised. I think he

might actually be a pretty good guy, and we should help " train " the

pretty good guys to do better. So I'm thinking about how to approach

this.

Good luck to you!

Sunny

> Did the doctor pressure you to have a hysterectomy instead?