Re: Ladies with premature Ovarian Failure

[Guest guest]

Hi Kathy,

I have a daughter who is 14 almost and has BPES. She hasn't started

her period. We went to the endocrinologist and she stated that she is

just a late starter. She did have her FSH checked and this was

normal. I am not sure if normal is what it should be before you go

through POF. We were not told by our geneticist what type of BPES

she has. I am really afraid that she might have Type 1 and want her

to learn this now rather than later. We lived 12 years with out a

diagnosis and now we know. I feel as if the doctors in NH do not

know enough about BPES and so they do not know which way to go with

it.

I printed something from this website for the endocrinologist in

regards on how to determine what type she might have. The

endocrinologist stated that it was up to the genetics doctor and she

would forward it on to him.

For anyone who has dealt with POF, does you FSH show normal until you

hit a certain point or should it show up as abnormal.

As for my daughter, she has already decided that she doesn't want

children. (Yes this may be an early decision). Her decision is based

on the fact that she doesn't want her children to have to go through

the same things she has had to go through with kids teasing her and

not wanting to be her friend because she is different. She has said

she want to adopt. I support any decision she makes now and in the

future. She is the most beautiful person inside and out. She cares

strongly about others and how they feel.

Sincerely,

in New Hampshire USA

--- In blepharophimosis , " z942271 " <z942271@...>

wrote:

>

> Hi, this is Kathy. I'm the mom with a now 22 year old daughter

that

> has Type I BPES. It's been a while since I posted but I would

really

> appreciate any insight into the POF you can give. has Type I

> BPES that has the associated POF. We had her FSH level tested when

she

> was 19 and it came back within the normal range. She had trouble

with

> increased menstral cycles so she was placed on a low dose of birth

> control. That level had to be increased 3 months ago and now she

has

> break through problems. Now she is an emotional wreck. We can't

tell

> if the pills are making her so emotional or if maybe we should get

her

> FSH retested. Her OB-Gyn suggests increasing the dosage again. My

> question to the ladies who have experienced POF is does it feel

like

> any one going through menopause (irritability, anxiety, etc). Also,

> would the pill (sometimes prescribed to help through menopause)

cause

> her FSH levels to be out of whack? Hoping to hear from you soon.

>

> Thanks so much

> Kathy

>

[Guest guest]

Thanks for your response. found out about the POF when she was

19 and it devestated her. I am divorced from her father and found

out that every woman in his family with BPES could not conceive. We

didn't get her tested because the evidence was there to support type

1. started menistrating at an early age. He FSH level was in

the normal range at 19 but she is having so many problems and her

emotions are off the charts right now. I though maybe one of the

ladies that had gone through this already could clue me in to how the

POF affected them at the time.

> >

> > Hi, this is Kathy. I'm the mom with a now 22 year old daughter

> that

> > has Type I BPES. It's been a while since I posted but I would

> really

> > appreciate any insight into the POF you can give. has Type

I

> > BPES that has the associated POF. We had her FSH level tested

when

> she

> > was 19 and it came back within the normal range. She had trouble

> with

> > increased menstral cycles so she was placed on a low dose of

birth

> > control. That level had to be increased 3 months ago and now she

> has

> > break through problems. Now she is an emotional wreck. We can't

> tell

> > if the pills are making her so emotional or if maybe we should

get

> her

> > FSH retested. Her OB-Gyn suggests increasing the dosage again.

My

> > question to the ladies who have experienced POF is does it feel

> like

> > any one going through menopause (irritability, anxiety, etc).

Also,

> > would the pill (sometimes prescribed to help through menopause)

> cause

> > her FSH levels to be out of whack? Hoping to hear from you soon.

> >

> > Thanks so much

> > Kathy

> >

>

[Guest guest]

Hi Chrissy,Do you mind my asking what age your daughter was when you explained the possibility of female infertility associated with BPES to her? My daughter is the same exact age, and I have not yet sprung that one on her. We are not aware of what type she has yet (1 or 2). I assumed that she would not be effected in this way, because she began menstruating at an average age (13), and has had regular cycles. Apparently that doesn't always mean anything. Are new mutations of BPES more likely to be type 1 or type 2, or is that not a factor?I am open to any advice on when / how to explain this possible infertility issue to my teen. (Though I'm not sure if she will hear me above all that "rap" music.... Maybe I should "text" the information to her via cell phone - teens seem to enjoy that method of communication.)chrissyj30

<c.jameson@...> wrote: Hi Kathy, I have a daughter who is 14 almost and has BPES. She hasn't started her period. We went to the endocrinologist and she stated that she is just a late starter. She did have her FSH checked and this was normal. I am not sure if normal is what it should be before you go through POF. We were not told by our geneticist what type of BPES she has. I am really afraid that she might have Type 1 and want her to learn this now rather than later. We lived 12 years with out a diagnosis and now we

know. I feel as if the doctors in NH do not know enough about BPES and so they do not know which way to go with it. I printed something from this website for the endocrinologist in regards on how to determine what type she might have. The endocrinologist stated that it was up to the genetics doctor and she would forward it on to him. For anyone who has dealt with POF, does you FSH show normal until you hit a certain point or should it show up as abnormal. As for my daughter, she has already decided that she doesn't want children. (Yes this may be an early decision). Her decision is based on the fact that she doesn't want her children to have to go through the same things she has had to go through with kids teasing her and not wanting to be her friend because she is different. She has said she want to adopt. I support any decision she makes now and in the future. She is the most

beautiful person inside and out. She cares strongly about others and how they feel. Sincerely, in New Hampshire USA > > Hi, this is Kathy. I'm the mom with a now 22 year old daughter that > has Type I BPES. It's been a while since I posted but I would really > appreciate any insight into the POF you can give. has Type I > BPES that has the associated POF. We had her FSH level tested when she > was 19 and it came back within the normal range. She had trouble with > increased menstral cycles so she was placed on a low dose of birth > control. That level had to be increased 3 months ago and now she has > break through problems. Now she is an emotional wreck. We can't tell

> if the pills are making her so emotional or if maybe we should get her > FSH retested. Her OB-Gyn suggests increasing the dosage again. My > question to the ladies who have experienced POF is does it feel like > any one going through menopause (irritability, anxiety, etc). Also, > would the pill (sometimes prescribed to help through menopause) cause > her FSH levels to be out of whack? Hoping to hear from you soon. > > Thanks so much > Kathy >

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[Guest guest]

Hi Donna,

If you are looking for suggestions...if I were in your position, I would not worry my teenager with this until you get the results back from the blood test to find out what type she is. Then, only if she is Type I will you even have to worry about having that awful conversation. Kids that age already have enough to worry about that I would not get her all stressed out unnessasrily.

Just my thoughts, take care,

Ontario, Canada

Re: blepharophimosis Re: Ladies with premature Ovarian Failure

Hi Chrissy,Do you mind my asking what age your daughter was when you explained the possibility of female infertility associated with BPES to her? My daughter is the same exact age, and I have not yet sprung that one on her. We are not aware of what type she has yet (1 or 2). I assumed that she would not be effected in this way, because she began menstruating at an average age (13), and has had regular cycles. Apparently that doesn't always mean anything. Are new mutations of BPES more likely to be type 1 or type 2, or is that not a factor?I am open to any advice on when / how to explain this possible infertility issue to my teen. (Though I'm not sure if she will hear me above all that "rap" music.... Maybe I should "text" the information to her via cell phone - teens seem to enjoy that method of communication. )chrissyj30

<c.jamesonverizon (DOT) net> wrote:

Hi Kathy,I have a daughter who is 14 almost and has BPES. She hasn't started her period. We went to the endocrinologist and she stated that she is just a late starter. She did have her FSH checked and this was normal. I am not sure if normal is what it should be before you go through POF. We were not told by our geneticist what type of BPES she has. I am really afraid that she might have Type 1 and want her to learn this now rather than later. We lived 12 years with out a diagnosis and now we know. I feel as if the doctors in NH do not know enough about BPES and so they do not know which way to go with it.I printed something from this website for the endocrinologist in regards on how to determine what type she might have. The endocrinologist stated that it was up to the genetics doctor and she would forward it on to him. For anyone who has dealt with POF, does you FSH show

normal until you hit a certain point or should it show up as abnormal. As for my daughter, she has already decided that she doesn't want children. (Yes this may be an early decision). Her decision is based on the fact that she doesn't want her children to have to go through the same things she has had to go through with kids teasing her and not wanting to be her friend because she is different. She has said she want to adopt. I support any decision she makes now and in the future. She is the most beautiful person inside and out. She cares strongly about others and how they feel.Sincerely, in New Hampshire USA>> Hi, this is Kathy. I'm the mom with a now 22

year old daughter that > has Type I BPES. It's been a while since I posted but I would really > appreciate any insight into the POF you can give. has Type I > BPES that has the associated POF. We had her FSH level tested when she > was 19 and it came back within the normal range. She had trouble with > increased menstral cycles so she was placed on a low dose of birth > control. That level had to be increased 3 months ago and now she has > break through problems. Now she is an emotional wreck. We can't tell > if the pills are making her so emotional or if maybe we should get her > FSH retested. Her OB-Gyn suggests increasing the dosage again. My > question to the ladies who have experienced POF is does it feel like > any one going through menopause (irritability, anxiety, etc). Also, > would the pill (sometimes prescribed to help

through menopause) cause > her FSH levels to be out of whack? Hoping to hear from you soon. > > Thanks so much> Kathy>

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[Guest guest]

Hi Kathy,

I feel the desperation in your words here, so I just want to offer my

own bit of input, but I'm not sure how much help I can be to you and

your daughter. I'm a 51 year old female with Type 1 BPES but I didn't

know this until just this year when I found this website! I didn't

know there was a name to my affliction, and certainly had no idea

that my POF was connected to it. Since then I've learned quite a bit

about BPES.

In regards to your daughter's mood swings, I most definitely would

attribute them to some kind of hormonal imbalance. But I would really

advise you to take all these questions of yours and address them to

the professionals; and if you're not satisfied with the doctors you

presently have, find a second opinion.

I did not receive hormone treatment when I was going through my

premature menopause (in my twentys) because I didn't know that I was

going through it. Instead, I saw psychiatrists and psychologists and

went through numerous anti-depressants and anti-anxiety medications.

I finally was placed on hormone treatment in my thirtys and remain on

them today.

I also want to urge your daughter that if she does want to have

children in the future, it might behoove her to consider going

through specific fertility treatment to harvest some of her eggs

while she still has them and freeze them. POF women who wish to be

pregnant only have the choice of using donor eggs if they don't have

any of their own. Just something to think about.

I wish your the best in getting these harrowing female problems

figured out. I know what it's like to suffer through the emotional

ups and downs she's going through.

Dannah McCrea-

--- In blepharophimosis , " z942271 " <z942271@...>

wrote:

>

> Hi, this is Kathy. I'm the mom with a now 22 year old daughter

that

> has Type I BPES. It's been a while since I posted but I would

really

> appreciate any insight into the POF you can give. has Type I

> BPES that has the associated POF. We had her FSH level tested when

she

> was 19 and it came back within the normal range. She had trouble

with

> increased menstral cycles so she was placed on a low dose of birth

> control. That level had to be increased 3 months ago and now she

has

> break through problems. Now she is an emotional wreck. We can't

tell

> if the pills are making her so emotional or if maybe we should get

her

> FSH retested. Her OB-Gyn suggests increasing the dosage again. My

> question to the ladies who have experienced POF is does it feel

like

> any one going through menopause (irritability, anxiety, etc). Also,

> would the pill (sometimes prescribed to help through menopause)

cause

> her FSH levels to be out of whack? Hoping to hear from you soon.

>

> Thanks so much

> Kathy

>

[Guest guest]

Dear Kathy, I'm sorry but I don't have any real good news. My 2 sisters very rarely had periods, neither have children. I started at 13, I had problems with having a 21 day cycle that lasted 10days. Then at 17 it went to a normal 28 days. I thought great and I always thought that because I had periods I would be able to have children. At 21 or 22 I started missing periods, I had gotten married at 20 so I was using birth control but was not faithful with it so I took pregnancy tests, more than I can count and I was never pregnant. At 25 I started trying and after a few months and nothing happening and I was missing periods by this time for 2 or 3 months I decided to go to a geneticist. That was the first I was ever told that my chances of EVER having children was maybe 10 to 15% and that was at a very young age. I never really believed it, I thought it would happen, well at 28 and after having several health problems I was told I

had went through premature menopause and was started on HRT. At 32 I had a complete hysterectomy because I was having so many problems with the HRT I just couldn't take it anymore. Also, right after I was married I too tried birth control pills, ITS WAS HORRIBLE. I had hot flashes so bad I would have sweat run down my face and all of the other systems you wrote about your daughter. If I was your daughter I would get off of the pills. From what I have been told and seen with my own sisters type 1 very rarely have kids, we just get bad periods if at all. I wonder if it would be possible for your daughter to have an exploratory lap to check size of her ovaries. I did and was told that everything looked okay, just really small ovaries. My ob-gyn had studied with the geneticist I went to and he told me at that time(1988or1989) they thought that women with BPES was maybe born with 5000 eggs as compared to a "normal" women with maybe 5oo,ooo eggs. It was the only

explanation they could come up with at that time. I'm very sorry this is soooo long. I am giving you my personal email if your daughter would like to talk to me without everyone reading it. jlelpn03@.... To your daughter , my heart goes out to you. I know what you are feeling, how you are feeling, and the frustration. If you ever need to talk please email me on my above email, somethings you just can't say for everyone to read. Janicez942271 <z942271@...> wrote: Hi, this is Kathy. I'm the mom with a now 22 year old daughter that has Type I BPES. It's been a while since I posted but I would really appreciate any insight into the POF you can give. has Type I BPES that has the associated POF. We had her FSH level tested when she was 19 and it came back within the normal range. She had trouble with increased menstral cycles so she was placed on a low dose of birth control. That level had to be increased 3 months ago and now she has break through problems. Now she is an emotional wreck. We can't tell if the pills are making her so emotional or if maybe we should get her FSH retested. Her OB-Gyn suggests increasing the dosage again. My question to the ladies who have experienced POF is does it feel like any one going through menopause (irritability, anxiety, etc). Also, would the pill (sometimes prescribed to help through menopause) cause her FSH levels to be

out of whack? Hoping to hear from you soon. Thanks so muchKathy

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[Guest guest]

Hi

I am 29 and going through POF. I am so lucky that my husband and I had a surprise when I was 24 resulting in a beautiful a baby girl (I am the first female in the family with BPES to have a child, my cousin has also had a little girl this year both girl do not have BPES).

However at this point when you haven't hit the menopause but know you do not have any eggs left it feels like limbo to be honest.

I don't really want to write everything on here as it is still a bit of a raw nerve but if you want to talk to me direct my email is bryony2@... and maybe we can talk a bit more and I will help all I can.

Best wishes.

Bryony

----Original Message----From: z942271@...Date: 20/11/2007 22:45 <blepharophimosis >Subj: blepharophimosis Re: Ladies with premature Ovarian Failure

Thanks for your response. found out about the POF when she was 19 and it devestated her. I am divorced from her father and found out that every woman in his family with BPES could not conceive. We didn't get her tested because the evidence was there to support type 1. started menistrating at an early age. He FSH level was in the normal range at 19 but she is having so many problems and her emotions are off the charts right now. I though maybe one of the ladies that had gone through this already could clue me in to how the POF affected them at the time.> >> > Hi, this is Kathy. I'm the mom with a now 22 year old daughter > that > > has Type I BPES. It's been a while since I posted but I would > really > > appreciate any insight into the POF you can give. has Type I > > BPES that has the associated POF. We had her FSH level tested when > she > > was 19 and it came back within the normal range. She had trouble > with > > increased menstral cycles so she was placed on a low dose of birth > > control. That level had to be increased 3 months ago and now she > has > > break through problems. Now she is an emotional wreck. We can't > tell > > if the pills are making her so emotional or if maybe we should get > her > > FSH retested. Her OB-Gyn suggests increasing the dosage again. My > > question to the ladies who have experienced POF is does it feel > like > > any one going through menopause (irritability, anxiety, etc). Also, > > would the pill (sometimes prescribed to help through menopause) > cause > > her FSH levels to be out of whack? Hoping to hear from you soon. > > > > Thanks so much> > Kathy> >>__________________________________________________Get an exclusive discount on Norton 360 from Tiscali http://www.tiscali.co.uk/products/securepc

[Guest guest]

Hi all,

**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 in

January. 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. 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.

6. 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, this is Kathy. I'm the mom with a now 22 year old daughter that

> has Type I BPES. It's been a while since I posted but I would really

> appreciate any insight into the POF you can give. has Type I

> BPES that has the associated POF. We had her FSH level tested when she

> was 19 and it came back within the normal range. She had trouble with

> increased menstral cycles so she was placed on a low dose of birth

> control. That level had to be increased 3 months ago and now she has

> break through problems. Now she is an emotional wreck. We can't tell

> if the pills are making her so emotional or if maybe we should get her

> FSH retested. Her OB-Gyn suggests increasing the dosage again. My

> question to the ladies who have experienced POF is does it feel like

> any one going through menopause (irritability, anxiety, etc). Also,

> would the pill (sometimes prescribed to help through menopause) cause

> her FSH levels to be out of whack? Hoping to hear from you soon.

>

> Thanks so much

> Kathy

>