Concerned Husband...

[Guest guest]

My 44-year-old wife, Yvonne, has had fibroids since I first met her

in 1990. Her periods over the last couple of years have become both

very heavy, and rather prolonged (2 or more weeks at times). My

wife's OB/GYN called at dinner the other night to inform her that a

recent sonogram showed that her fibroids had not only gotten much

larger in the last 6 months, but more new ones were also forming!

I find this development very alarming; my wife, on the other hand,

tends to minimize her condition every time the topic comes up

(e.g., " Most women my age have them, " or, " They'll go away at

menopause, " or, " My doctor knows best, and she's not overly

concerned, " etc.). That is why I, not my wife Yvonne, joined this

discussion group. I have your posts going to her e-mail account

though, so she is reading all of the submissions - Thanks.

My real concern is...until the other night I had not heard the

words 'fibroid' and 'tumor' mentioned in the same sentence - thanks

in part to my wife's continuous minimization campaign. Even though

uterine fibroids are considered non-cancerous tumors, I am still

extremely worried because she also has a family history of 'female

problems.' Yvonne's mother just had a non-cancerous tumor the size of

a baseball removed from one of her ovaries (she's into minimization

too), and her aunt has had " mysterious " ovarian problems over the

years in addition to fibroids.

I apologize for being so long-winded. Here's my question to the

group: I have asked my wife to make another OB/GYN appointment in a

couple of months; what kind of advice and recommendations may we

expect to receive from her doctor at that time? Wait for menopause?

Hysterectomy? Other theropy? Etc.?

Thanks in advance for any and all responses.

Best of luck to all of you who live with this nasty affliction,

Hal

[Guest guest]

Hi,

I was in Yvonne's boat. The first thing I want to say is ANEMIA. Bleeding like

this can cause anemia and she needs to stay on top of it. Have her check her

blood levels. Take slow FE iron (you can get it over the counter) and vitamin C

to help absorbtion. Eat iron rich foods. Anemia can be dangerous if not treated.

Fibroids are tumors (benign) but not cancerous. That would be extremely rare.

Maybe Yvonne can wait for menopause. She has other options like myo, resection

or UAE. I wouldn't push hyst on any woman but it's a option. It's a permanent

solution when other options are available. A resection may be a option and it's

a simple procedure. It depends on the size and type of fibroids. Sonograms can

be off. Has she had a saline sono, a MRI? This might help her decide what her

best options would be.

I had a Myo in Aug.. UAE or resection were not a options for me. I never wanted

a hyst. My periods are normal now. My anemia is slowly going away. I feel so

much better. A shocking difference. Three docs here told me hyst so I went to a

RE doc in another state who said he could do a myo easily. Lots of women are

only offered hysts, so beware of this. You have several options.

Hal, I understand your concern about your wife. But pushing her into a decision

she doesn't want won't help her. Support her. You did a wonderful thing by

joining this group and sending her the emails. A very smart thing. Maybe the

best thing! Applause for you!

Yvonne, join this group too. Read the email. Ask us any questions. There's a lot

of smart people here and a lot of experience. Ask questions about treatments,

best docs, anything. But in the end, I say to you, do what YOU want. Not your

husband, family, or doc - what you want.

The advice Yvonne's doc might give may be based on his skill level, bias, lack

of knowledge about more up to date options or his educational background. The

doctors here could not do a myo so they didn't offer it, resections or UAE. They

will just tell their patients hyst.. Her doc should maybe order better scans (I

don't know what scans she has did) but should surely tell her about all options

whether he/she can do them or not. This would be the mark of a good doc. The doc

should let her make the decisions.

But please check out the anemia. If you have not done this already, do it ASAP.

Your regular MD can do this usually in the office. It's a blood test. Don't wait

a couple of months on this. You are losing a lot of blood. This could be a bad

problem for you. Don't ignore this in any way. Many of us have ended up in the

ER for anemia, myself included.

Good luck and God bless!

Ku

[Guest guest]

Hal!

You are a GOOD MAN! I don't know many husbands that would go to

the extent you are!

Don't let the word Tumor freak you out! That is what fibroids are.

They are Muscle Tumors and 99% of the time non-cancerous.

I had several large fibroids myself and lived with them for several

years. You never know if they will grow or not it is different for

everyone.

I don't know what your wife's doctor will advise but the 3 Doctor's

that I saw all gave me the following options:

1. Since the fibroids were not causing me any problems I was given

the Watch and Wait option. This is the option I took for 3 years and

it entailed me going for a yearly Ultrasound to monitor the size and

growth.

2. UAE

3. Myomectomy

4. Hysterectomy

I hope this helps. If you have any other questions don't hesitate to

ask. The ladies online are VERY informative. Good luck to you and

your wife!

> I have asked my wife to make another OB/GYN appointment in

a couple of months; what kind of advice and recommendations may we

> expect to receive from her doctor at that time? Wait for

menopause? Hysterectomy? Other theropy?

[Guest guest]

Hal and Yvonne...second try as my system just swallowed my lengthy post and sent

it to outerspace...so, I start again.

First, let me say that Kukalaka's response was excellent. Yvonne needs to be

checked for ANEMIA. It can sneak up on you. You can be anemic and not realize it

until you pass a personal threshold where you notice symptoms, including but not

exclusive to being very tired.

And, once you are found to be anemic, it may take time to build your blood back

up. Iron Deficiency Anemia is a frequent problem in women due to their monthly

menses even without extremely heavy periods. If you search the archives, there

are many discussions on anemia, differnent types and symptoms of anemia and

treatment of anemia...along with a few accounts of trips to the ER due to heavy

bleeding and anemia.

Our own " medical delitante " Roma has posted a lot of lab information concerning

interpeting your lab blood counts and these posts can be found in the

archives...along with a few NUFF show tunes to lighten the moment!

One has to be aware of the " creep of life " syndrome. I was one of those that

experienced this syndrome. I have dealt with symptoms from my fibroids since

probably my twenties when I had my first D & C. In my thirties, I first was told

about my alien fruitbasket, but was given only the choice of HYSTO. As things

progressed, I changed GYNs several times, and was always told HYSTO...then it

became veritcal HYSTO. Since I was still in the baby want stage when this was

first presented, I refused the HYSTO and chose wait and see.

Then, I past the reasonable time (for me) for having a baby, but discovered

other reasons for not wanting to have a HYSTO which was still the only choice

being offered. Those included fear of surgery, fear of surgical menopause, and

later on this list, Marsha and others enlightened me to the full scope of the

implications from HYSTO (again, search the archives for a wealth of posts with

valuable information).

In my late 40's, I hit the " uterine wall " and realized how much these aliens had

taken from my life. I had become more and more tired, leading to less and less

active life, and I hadn't even realized it was happening until I looked back. I

had started becoming more reclusive due to fear of a gushing episode, or from

being just plain tired. My self-esteem had suffered and it hurt my professional

presentation of myself. For the first time in my life I had a belly bump where

my 15 week uterus was pushing out on my clothes. And, between the " middle-age "

thing, and the tiredness, I was gaing weight on top of that belly bump. I hit an

all time low.

My research kicked in and I found this group. I had already found out about UAE

from a news article about a member of this list that had UAE a number of years

ago. My GYN had pushed that away as an option when I told her about the article.

Then, another year past and the gushing episodes were no longer mitigated by the

continous active BCPs.

I tried to find a doc for a MYO but at that time, did not find any leads for a

doc locally from this list (I now have one lead). Unfortunately, as I was now

over 50, finding a doc to do a MYO became more difficult as some that would do a

MYO for fertility, are less enthusiastic about doing one for a 50-something and

the risks of having the myo converted to HYSTO increases (IMHO) as the doc

doesn't have the invested interest of saving the uterus for a baby incubator.

I also checked into some of the other studies/treatments, but found that I

either did not like the study conditions (J879?), was too old, or lived too far

away etc. So, I joined the EMBO group, and started the quest for UAE. Although I

am not considered a success story for UAE, I have no regrets for trying, and

have pushed off the HYSTO, at least for the time being.

I am convinced that if I had sought out treatment sooner, I would have had

better results. I have had 50% shrinkage (or more) of my fibroids, but the

symptoms have only been reduced and not eliminated. It did buy me time. My

uterus was about 15? week at the time of the UAE, and I did not loose the belly

bump. I still have urinary urgency and some bowel symptoms but both are

improved. IBS episodes are now rare.

I am still trying to turn around that frieghter....the weight gain and effects

of anemia combined with middle age, and other life crisis that have happend the

last 4 years has taken a toll on my body. I am now definitely perimenopausal and

having symptoms from that to cloud the issue. My new years resolution is to

increase excercise and improve health habits to see if I can improve the

perceived results of my UAE by changing some of the side effects of dealing WITH

my fibroids for so long.

I digress...please, make full use of this board by searching the archives...we

used to have a lady on the board that had an amazing ability to provide the

exact message numbers for almost any topic on the board, but she apparently has

moved on. However, she was part of an effort to review the archives and add

information to the database on doctors. Check this and the other files found in

this group out for a wealth of information, lists of questions, doctors, links,

etc.

The Archives contain a wealth of information as the tone and topics discussed on

this board goes through waves of different focus and different primary posters.

However, feel free to post any questions even if the topic was previously

discussed in the archives as we have a constantly increasing and changing

members of this list, with new information and different experiences.

And, Hal, you are a gem. I hope Yvonne realizes that. There are many ladies on

this board that would like to see Hal " cloned " , as there have been many stories

of husbands/boyfriends and other significant family and friends that should be

" support " that have abandoned, or worse, psychologically abused the Fibroidian

seeking help.

I am sorry, for rambling there...the first attempt at this email was much

better...

I wish you both all the best as you move through this process of research on

fibroids...

JB

[Guest guest]

Hal -

It's nice to see a guy concerned with his wife's welfare. I am very new to

this situation, but I think the best thing to do to comfort your concerns is

to go with her to her next appointment. Hang in there.

Jenn

[Guest guest]

Hello!

As you'll be aware, heavy bleeding is a common fibroid symptom and

something like 1 in 5 women get fibroids. I have no clue what the

statistics are for all the other gynaecological conditions with

similar symptoms out there, but I know it's a hell of a lot of women.

You can include in that some very glamorous celebrities. For example,

Beckham and has PCOS. Good for her for letting us know.

Fibroid symptoms can vary from person to person according to type,

size and location.

Yvonne, if you make another appointment in the future,(Even if it's

for another health issue) you could use that opportunity to ask

advice on handling the heavy periods, such as avoiding anaemia, what

to do and who to contact if there's ever a particularly bad phase of

it, and what to eat to replenish anything the blood may be low on,

such as green vegetables for iron. Let your doctor know about the

lengths of your periods and if you have flooding with clots that

leave you feeling weak and concerned about the blood loss.

Sometimes just the symptoms, such as heavy bleeding can be treated to

ease them e.g. with a birth control method. A healthy and ideally

organic diet is a good idea. Help your liver to cope with excess

oestrogen. Be wary of anything available on the internet that isn't

approved by your own doctor first.

There are some very good books that cover various questions we have

about fibroids, such as treatment options. They seem to strike a good

balance between thorough explanations and being comprehendable. Do an

extensive search on Amazon books for 'Fibroids' to find these. The

, Broder and Drum - 'What your doctor may not tell you about

fibroids' is one of my favourites. These books are worth investing

in.

Ladies who are not aiming to have more children and are in their 40's

and fifties are often offered a hysterectomy, but this doesn't suit

everyone and there are alternative treatments to consider which will

also cure or lessen symptoms. You've probably come across references

to different types of treatments for fibroids here and on some of the

terrific fibroid information websites out there. Look into the pros

and cons with all of these. Bear in mind that some websites are sales

pitches and therefore have something to promote, perhaps with a

dismissive comment about alternatives. Watch out for contradictory

statements in differentsources of information and what the original

research was. The , Broder and Drum book explains in laymen's

terms and succinct fashion what research sources found and when,

where and how.

Fibroids often come in the plural. It's a personal choice as to

whether you watch and monitor them, treat symptoms or go for a

treatment. It's hard to make an informed choice without information.

The books and internet sites are great for fibroids info.

Ask the gynaeocologist to lay out your options and the pros and cons

if you:

*Watch and monitor regularly

* Treat symptoms

* Wait till the menopause

* Have an appropriate treatment in 2004

Ask about HRT in relation to fibroid sufferers and the latest

thinking on HRT. Will it cause fibroids to grow? Are there different

types of HRT? Ask about the pros and cons of different treatment

options and of surgery in general. What do they think about

adhesions? How often do they personally do treatment X? do they often

need to give transfusions or to turn a myo into a hysterectomy? (it

reflects on that individual surgeon's skill). How often do they

personally do that type of operation/procedure? Pick their brains

about the menopause and what happens in an early menopause situation,

such as bone density, and so forth. Miriam Stoppard's book on women's

health is a good all round resource and discusses the menopause quite

a bit. I believe there are a few similar books aimed at different age

groups and some that span the generations.

Aa lot of women don't even know they have fibroids and other problems

and might think their symptoms are due to another cause. Maybe the

backache is their furniture. Perhaps they have an irritable bowel

etc. If there's one thing I've learned last year it's that I had a

great doctor and gynaecologist, but that not all women are so lucky

and some have had doctors who sounded credible but were trouble. If

you do a little research, you'll know if what you've read in books

and on the internet tallies with what the gynaecologist is saying.

Fibroids are associated with oestrogen dominance, but progesterone

also plays a part. I'm no expert anyhow, so take what I say with a

pinch of salt as the memories of things I read somewhere

once.

Fibroids are also called tumours and this terminology scares a lot of

women into thinking they have cancer when they don't. It is very rare

for a diagnosis of fibroids to turn out to have actually been a

cancer type of growth. Blood tests, ultrasound, smear tests and

questions help the doctor get an idea of your risks and to make an

accurate diagnosis. Sometimes it turns out that the patient didn't

have fibroids but some condition often mistaken for fibroids, such as

adenomyosis (however you spell it)and some of us have had fibroids in

combination with something like an ovarian cyst or endometriosis.

Fibroids are likely to be hereditary. It's supposedly passed along

the male line, which seems odd to me as my mother also had fibroids

and my paternal grandmother was as slim as a rake. My maternal

grandmother had stomach cancer.

Polycystic ovary syndrome (PCOS) is also associated with weight gain

and odd periods as possible symptoms and hirsuitism is another. (See

soul cysters website for that).

>

<what kind of advice and recommendations may we expect to receive

from her doctor at that time? Wait for menopause? Hysterectomy?

Other theropy? Etc.? >

Yes, any of those. You might want to think about your questions and

responses to any of those possibles.

>

It's worth bearing in mind that a myomectomy should cure fibroid

symptoms such as heavy bleeding. At an interview you can always say

you'll get back to them with your answer when you've had a chat and a

think at home. Ask lots of pre-prepared questions and write it all

down at the earliest opportunity.

Aztek