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Hi everyone

Please remember that each of us has a right to speak freely, so

long as we avoid abuse, racism, or being off topic. Putting something

reasonable in the subject heading of the post should make obvious to people

what the topic is about.  If you don’t want to read the emails / message

thread (for whatever reason) then don’t read. It is as simple as that.

It can be very difficult to get good accurate information from knowledgeable

healthcare providers.  We welcome information sharing, or references to good

information. For example – only recently have I read about this (please

read below).

No topic is off topic.

Please learn to listen or be tolerant other people’s

opinions. You don’t have to agree with them.

Shireen Mohandes

London, England

Management of POF needs to address the two major

following medical issues that are applicable to primary ovarian insufficiency

in general and not specific for BPES, as no data specific to BPES are

available:

Hormone replacement therapy (HRT). The American

Society for Reproductive Medicine and the International Menopause Society

recommend estrogen replacement therapy for women with primary ovarian

insufficiency (amenorrhea and a menopausal serum FSH concentration). Although

no data from randomized trials guide the use of hormonal therapy in women with

BPES and POF, a reasonable regimen would be 100 ìg of transdermal estradiol and

10 mg of oral medroxyprogesterone acetate daily for the first 12 days of each

month. Women should keep a menstrual calendar and have a pregnancy test

promptly in the case of late menses [ 2009].

A pelvic ultrasound examination and measurement of bone mineral density are

indicated at the time of diagnosis of ovarian insufficiency. Women with primary

ovarian insufficiency should be encouraged to maintain a lifestyle that

optimizes bone and cardiovascular health, including engaging in regular

weight-bearing exercise, maintaining an adequate intake of calcium (1200 mg

daily) and vitamin D (at least 800 IU daily), eating a healthy diet to avoid

obesity, and undergoing screening for

cardiovascular risk factors, with treatment of any identified risk factors.

Infertility. No therapies have

been shown to restore ovarian function and fertility. Some couples are averse

to adoption and to reproductive technologies and are content not to become

parents or to accept the unlikely but real chance that the infertility will

resolve spontaneously (see Natural History).

For couples who decide to pursue parenthood actively, the options are adoption,

foster parenthood, embryo donation, and egg donation. The rates of pregnancy

with egg donation appear to be similar among older and younger women. Women

with primary ovarian insufficiency who become pregnant as a result of oocyte

donation may have an increased risk of delivering infants who are small for

gestational age and of having pregnancy-induced hypertension and postpartum hemorrhage,

but these findings are controversial [ 2009].

The issue of POF is emotionally charged and should be discussed with the

patient with this in mind.

 

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Thank you Shireen!

This is a support group and we should all feel free to be able to discuss or ask

for support on a particular issue relating to BPES.

I may not always agree with what somebody is posting but I like reading them

because there are many perspectives/new research etc and I may just learn

something new that can aide our family, in particular my daughter who is nine

and is the only one in our family with BPES.

Thank you to everybody who has the courage to ask for help and for those of you

who share your experiences...I truly appreciate you.

Sincerely,

Debbie Weston From

North Georgia mountains!

>

> Hi everyone

>

> Please remember that each of us has a right to speak freely, so long as we

> avoid abuse, racism, or being off topic. Putting something reasonable in the

> subject heading of the post should make obvious to people what the topic is

> about. If you don't want to read the emails / message thread (for whatever

> reason) then don't read. It is as simple as that.

>

> It can be very difficult to get good accurate information from knowledgeable

> healthcare providers. We welcome information sharing, or references to good

> information. For example - only recently have I read about this (please read

> below).

>

> No topic is off topic.

>

> Please learn to listen or be tolerant other people's opinions. You don't

> have to agree with them.

>

> Shireen Mohandes

>

> London, England

>

> Management of POF needs to address the two major following medical issues

> that are applicable to primary ovarian insufficiency in general and not

> specific for BPES, as no data specific to BPES are available:

>

> Hormone replacement therapy (HRT). The American Society for Reproductive

> Medicine and the International Menopause Society recommend estrogen

> replacement therapy for women with primary ovarian insufficiency (amenorrhea

> and a menopausal serum FSH concentration). Although no data from randomized

> trials guide the use of hormonal therapy in women with BPES and POF, a

> reasonable regimen would be 100 ìg of transdermal estradiol and 10 mg of

> oral medroxyprogesterone acetate daily for the first 12 days of each month.

> Women should keep a menstrual calendar and have a pregnancy test promptly in

> the case of late menses [

> <http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene & part=bpes#bpes.REF.

> nelson.2009.606> 2009].

> A pelvic ultrasound examination and measurement of bone mineral density are

> indicated at the time of diagnosis of ovarian insufficiency. Women with

> primary ovarian insufficiency should be encouraged to maintain a lifestyle

> that optimizes bone and cardiovascular health, including engaging in regular

> weight-bearing exercise, maintaining an adequate intake of calcium (1200 mg

> daily) and vitamin D (at least 800 IU daily), eating a healthy diet to avoid

> obesity, and undergoing

> <http://www.ncbi.nlm.nih.gov/bookshelf/?book=gene & part=glossary & rendertype=d

> ef-item & id=screening> screening for cardiovascular risk factors, with

> treatment of any identified risk factors.

>

> Infertility. No therapies have been shown to restore ovarian function and

> fertility. Some couples are averse to adoption and to reproductive

> technologies and are content not to become parents or to accept the unlikely

> but real chance that the infertility will resolve spontaneously (see

> <http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene & part=bpes#bpes.Natu

> ral_History> Natural History).

>

> For couples who decide to pursue parenthood actively, the options are

> adoption, foster parenthood, embryo donation, and egg donation. The rates of

> pregnancy with egg donation appear to be similar among older and younger

> women. Women with primary ovarian insufficiency who become pregnant as a

> result of oocyte donation may have an increased risk of delivering infants

> who are small for gestational age and of having pregnancy-induced

> hypertension and postpartum hemorrhage, but these findings are controversial

> [

> <http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene & part=bpes#bpes.REF.

> nelson.2009.606> 2009].

>

> The issue of POF is emotionally charged and should be discussed with the

> patient with this in mind.

>

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