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Re: POF, Menopuase and Osteoporoses

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Hello Miss Bry,

I, too, had questions about the subject of POF myself, but it was

just a bit too touchy for me. So thank you for brining it up. Well,

I am a 23 year old female who has gone through that stage (or so I'm

thinking). I've never really got a chance to experience the

unpleasant feelings of womanhood (many tell me to be grateful for

that). I grew up knowing something about me was different but I

didn't quite find out that I had BPES until a month or two ago.

Before that, all I knew was that I was different; first of all, I

never got that monthly visit from Aunt Flo when all my friends were

expecting it. Second, I always wondered about having children.

Consider yourself very lucky to have a child; right now, all I do is

claim my brother's and sister's kids. I was diagnosis with POF in

early part of 2005 but didn't think nothing of it; maybe

just `missed diagnosed' but then really believed I had POF after

finding out that I have BPES in Feb of this year. Sorry, I guess I

didn't give as much help as I thought I would have. Just have it

known that you helped me raise the level of my courage to discuss

this subject more and maybe someone else can help us.

--- In blepharophimosis , " bry_thomps " <bryony2@...>

wrote:

>

> Hi

>

> I am after some advice.

>

> I am 29 and have BPES. About 2 years ago I was trying for a

second

> child with no results so my GP began blood tests at various times

in

> my menstrual cycle then referred me to a fertility specialist who

in

> no uncertain terms told me to go away and get on with my life as

it

> wasn't going to happen as I had POF; he had no ideas what BPES was

> barr the 5 minutes he had taken to read my notes prior to meeting

> me! There was no option for any investigations or scans and I was

> too distraught to question this.

>

> In the past couple of weeks I have begun to get a red hot face and

> neck for a few minutes and then it clears so I am going to book

> another appointment as I fear an early onset menopause. My

> Grandmother had terrible osteoporoses and my aunt on the same side

> has terrible bone structure so I am terrified as I have low

oestrogen

> but my GP refuses a bone density scan as I am only 29.

>

> Anyway the point of this post is I am really interested to know of

> other women's experiences as I feel somewhat despondent that my GP

> and local hospital have no idea what they are dealing with and are

> happy to treat me dare I say " normally " when they have no idea

what

> it is they are dealing with!

>

> Thanks

> B xx

>

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Hi

Thank you so much for responding to my post; and Mark if I am back in

USA I will be sure to arrange a scan :-) as my Aunt has not yet begun

the menopause but her general bone density is naturally very low even

before the process begins hence my concerns.

I know how very lucky I am to have , I have read some stories on

here from women and sit in floods of tears as I know how strong the

biological pull is! was a happy surprise very early on in my

marriage when I was 23 having come off contraception for fertility

testing.

I am going to go to my GP this week for blood test to let me know if

I am menopausal but I really don't know all of the other questions

(if any) I should be asking, does our condition chnage anything? My

cousin with BPES was diagnosed as menopausal at 23 started HRT and

fell pregnant almost straight away (a VERY unusual occurrence) and

when she went to her GP 6 months after the birth was told all of her

hormone levels were normal.

My head is full of so much that I can't talk about it as I can't make

any sense of it myself.

Sorry moan over :-)

Thanks for listening!

B xx

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G'day

I too have also only found out that I have Bleph and I understand

there are 2 types. As I have just had a daughter I naively assumed

POF only effected the type where females cannot have children at all,

am I wrong? I have an appointment with a geneticist in a few weeks

and hope to get some answers there but thought someone here might

know.

Sorry I couldn't help with your question B, but I will say this, if I

wanted a test and the doctor wouldn't let me have it I would go to

another doctor. How dare any person in the medical world deny you

any test that you have asked for! Especially when there is a family

history of it.

I hope you get the tests you ask for soon as I'm sure it will give

you some answers.

> >

> > Hi

> >

> > I am after some advice.

> >

> > I am 29 and have BPES. About 2 years ago I was trying for a

> second

> > child with no results so my GP began blood tests at various times

> in

> > my menstrual cycle then referred me to a fertility specialist who

> in

> > no uncertain terms told me to go away and get on with my life as

> it

> > wasn't going to happen as I had POF; he had no ideas what BPES

was

> > barr the 5 minutes he had taken to read my notes prior to meeting

> > me! There was no option for any investigations or scans and I

was

> > too distraught to question this.

> >

> > In the past couple of weeks I have begun to get a red hot face

and

> > neck for a few minutes and then it clears so I am going to book

> > another appointment as I fear an early onset menopause. My

> > Grandmother had terrible osteoporoses and my aunt on the same

side

> > has terrible bone structure so I am terrified as I have low

> oestrogen

> > but my GP refuses a bone density scan as I am only 29.

> >

> > Anyway the point of this post is I am really interested to know

of

> > other women's experiences as I feel somewhat despondent that my

GP

> > and local hospital have no idea what they are dealing with and

are

> > happy to treat me dare I say " normally " when they have no idea

> what

> > it is they are dealing with!

> >

> > Thanks

> > B xx

> >

>

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Hi all, This is a post that I sent out a few months ago and will

re-post as it seems pertinent for the recent posting:

**Warning: this is a long email with a lot of medical information, so

it's not a good one for very young readers. If you are younger than

21 and you are reading this, please ask your parent to help you go

through it.**

I am so glad that the discussion has shifted to this topic again. I

am 32 and did not find out about my POF until last year. I have been

through 2 cycles of IVF that failed and now am doing egg donor. It

seems that we know a lot about what to do for girls when

they are babies with this, but how to approach adulthood?

I don't know about everyone else, but because of my confidence issues,

etc. around my BPES I tried not to think about it at all starting in

adolescence. And my parents kind of thought of it as a " done issue " .

In fact, there are very important medical concerns that need to be

followed and addressed during adulthood. This is something I have

thought about a lot and I have some initial thoughts. My advice (as a

physician and someone with POF) is the following for your daughters:

1. Type 1 vs. Type 2: My geneticist told me that there is a lot of

variability between types on the issue of POF. I think there is some

reassurance to know that your daughter is Type 2, but I would not be

totally reassured and I would not be devastated if they are Type 1.

We have a very rare disease and though there is some knowledge, it is

incomplete. I would recommend an appointment with a medical

geneticist in your area at age 18-21 for all your daughters if you are

able to swing it (both regionally and financially) to check in and get

information on their disease and what it means for them. I would do

this even if you saw a genetics doctor when they were younger. Your

daughter also deserves to have her questions answered. The decision

to be tested is not an easy one. Once you know which type you have

.... what then?

2. When to check FSH: There is no clear answer to this. It could be

normal one year and then go up the next. Also, you can be in the

early stages of menopause and the value can be normal. I was on birth

control pills for 10 years, so my period was not a clue to the

problem. Also, you can't send an FSH once you are on contraception

with estrogen because it will impact the result. Again, if you have

the means and the access in your area, I would recommend making an

appointment for your daughters with a reproductive endocrinologist.

These are doctors who specialize in fertility and POF and they will be

able to tell you what to do. I would go to this doctor even if your

daughter has a normal FSH. The point is to make a PLAN for how to

follow her risk for POF over time. You can also ask this doctor about

options for freezing embryos (you need sperm for this, so they have to

be with a partner at the time). You should also ask them about

whether the FSH is the best indicator of fertility. My repro endo MD

told me that the antral follicle count (seen on ultrasound) is a

better indicator of fertility than FSH sometimes. Again, this depends

on resources as well, but I think it's an important step.

With that said, how often should you send the FSH? It depends on why

you are sending it. If you are going to do something about it - like

you might have a child earlier or you might freeze embryos, or you

just want to know ... then send it yearly with your physical. It's not

an expensive test and insurance usually covers it. If your daughter

is not in the mind space to think about all that, then don't send it.

This should be her decision, in consultation with her doctor,

regarding the risks/benefits of the information.

3. Bone Density: If you are a woman with BPES who already has

POF....get your bone density tested. We are high risk for

osteoporosis. I am 32 and thanks to my nerdy childhood of no sports

and poor diet in medical school (plus the POF!) I have osteoporosis in

my spine and my hips. I have had a fracture in my foot and my back in

the past 5 years. And now I am now on calcium supplements and an

exercise plan. I can't take bone density medication until I have

children (we don't know how it might impact pregnancy), but I will

start that once I done having children. You can ask the reproductive

endocrinologist about this as well. All girls with Type 1 BPES should

be taking a daily multivitamin and calcium supplement to prevent bone

loss starting in teenage years. You build your bone until age 26 and

then that's it. It's very important to talk to your daughter's

pediatrician and your internist if you are older now about bone density.

4. Repeat Surgeries: Your children may also have questions about

repeat eye surgery. When is this necessary? I have no idea. Once

this IVF stuff is over for me I plan to make an appointment with an

opthalmologist (even better an oculoplastics surgeon) to discuss

future surgeries. My sling is drooping and I have a lot of tearing

problems. I don't know what my options are, but I plan to find out.

5. Menopause: Having POF is the same as menopause. I am taking

estrogen patches and progesterone pills to induce a period and to help

out with my bones. You need to do Hormone Replacement Therapy to

protect your bones. And probably to prevent endometrial cancer, you

should have a period at least 3 times a year until the 'normal age' of

menopause. So if you have POF, you should be on birth control or

estrogen/progesterone supplements. There is also the point made in

the post about menopausal symptoms. These medications will help with

that and they will also help with your sex drive, which decreases with

menopause as well.

6. Letting your daughters take control: I cannot emphasize enough

the importance of having your daughters see a therapist and/or genetic

counselor in addition to the genetics MD either. Decisions around

parenthood, genetic testing, and surgeries are complex. Please talk

to your doctors and demand to see a specialist if you can.

7. What about the boys? I also think boys should see the genetics

doctor and the opthalmologist in adulthood as well. It never hurts to

check in and get your questions answered.

I would be happy to answer any questions people have. This is

something that is very important to me ... to make sure adult girls

(and guys!) with BPES have accurate information for their health.

Thanks!

Carolyn

USA

>

> Hi

>

> I am after some advice.

>

> I am 29 and have BPES. About 2 years ago I was trying for a second

> child with no results so my GP began blood tests at various times in

> my menstrual cycle then referred me to a fertility specialist who in

> no uncertain terms told me to go away and get on with my life as it

> wasn't going to happen as I had POF; he had no ideas what BPES was

> barr the 5 minutes he had taken to read my notes prior to meeting

> me! There was no option for any investigations or scans and I was

> too distraught to question this.

>

> In the past couple of weeks I have begun to get a red hot face and

> neck for a few minutes and then it clears so I am going to book

> another appointment as I fear an early onset menopause. My

> Grandmother had terrible osteoporoses and my aunt on the same side

> has terrible bone structure so I am terrified as I have low oestrogen

> but my GP refuses a bone density scan as I am only 29.

>

> Anyway the point of this post is I am really interested to know of

> other women's experiences as I feel somewhat despondent that my GP

> and local hospital have no idea what they are dealing with and are

> happy to treat me dare I say " normally " when they have no idea what

> it is they are dealing with!

>

> Thanks

> B xx

>

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