RE: BPES and Infertility

[Guest guest]

Hi my name is Kerry and my husband's family suffer from type one bleps wich means that the women in the family that have the eye condition can not have children we are working with a genetices at the moment they seem to think that the women in our family go through early menopause, my husband and our daughter have the eye condition and if you would like me to I can talk to my husbands aunt she has the eye condition and she was never able to have children I can talk to her and get some info on what she went through.Ask Me <arlenevarela@...> wrote:

I have just recently learned the name of my condition. I am curious as to the infertility associated with BPES. Are there any women that can share their experiences in this regard? For the last 6-8 years I average 1-2 menstruations a year.

[Guest guest]

I have just recently learned the name of my condition. I am curious as to the infertility associated with BPES. Are there any women that can share their experiences in this regard? For the last 6-8 years I average 1-2 menstruations a year.

What is the name of your newly diagnosed condition? Can you share your age?

sonAsk Me <arlenevarela@...> wrote:

I have just recently learned the name of my condition. I am curious as to the infertility associated with BPES. Are there any women that can share their experiences in this regard? For the last 6-8 years I average 1-2 menstruations a year.

[Guest guest]

Hi,

I'm 24 and learnt last year of the connection between BPES and

infertility (or rather premature ovarian failure (POF)). I

researched the subject to try and make some sense of how the two are

connected and whether there is any way to determine if you're likely

to have POF.

As you're probably aware, there is a school of thought that

subscribes to the idea that there are two types of BPES: type I and

type II (imaginative titles!). The former is associated with POF

and the latter is thought not to have any association. There is a

test to determine whether you have type I or type II. This all

sounds quite simple and straight forward, however, I came across an

article dated 2003 in which it was reported that even if you have

type II BPES you may still suffer from POF.

This is an ever-changing area of genetics and my only experience

that I can pass on is go and see a geneticist who will advise you of

your individual position. Try not to automatically assume that

everything you read will be applicable to you and your situation –

that in itself is no easy feat, I know. I have found the prospect of

not being able to have children devastating – far worse than having

small eyes.

I hope that things work out for you and I know that you don't know

me, but if you'd like to talk to someone please feel free to contact

me.

Hannah

> I have just recently learned the name of my condition. I am

curious

> as to the infertility associated with BPES. Are there any women

that

> can share their experiences in this regard? For the last 6-8

years I

> average 1-2 menstruations a year.

[Guest guest]

Hello,

In response to the infertility experiences....my name is , I am 39 years old and am the first in my family with BPES. I am not quite sure if I am Type I or Type II, here is my scenerio. I was married at 21 and have never been on birth control and after 18 years of marriage I only have one child, a son, who I gave birth to at the age of 24. I never had any idea that infertility went with BPES, so after having my son and not being able to get pregnant again for years, my husband and I went to specialists and went through artificial insemination (which did not work). Then I had major surgery because they said my tubes were blocked, but although they said the operation was a success I still could not get pregnant. We then went through IVF (Invitro) several times also to no success. I was producing only a couple of folicles, even on the heavy duty drugs they were injecting into me, while other women were producing 20-25 folicles. So

I do not know if this is due to the BPES or if it is due to some other medical reason. Through out I have had fairly regular menstruation cycles (although sometimes very heavy, and sometimes skipped).

But emotionally all of the failed attempts are very trying, and after all of the years of trying we are at peace with the fact that we will not have any more children. I consider myself very very lucky to have had my son (who also has BPES). I really believe had I not married so young and had I not immediately wanted children, I would never have gotten pregnant, as they say you are more likely to produce follicles at a young age.

Because none of the specialists ever associated the BPES with our infertility problems I do not know if that is what they are due to. I would also be very interested to hear other peoples stories regarding this matter. Have any of you had similar experiences? I agree with Hannah that not being able to have more children is a far worse fate then having the small eyes. I would love to hear stories from other women with BPES regarding this.

Ask Me <arlenevarela@...> wrote:

I have just recently learned the name of my condition. I am curious as to the infertility associated with BPES. Are there any women that can share their experiences in this regard? For the last 6-8 years I average 1-2 menstruations a year.

[Guest guest]

(note) We have 2 's in this support group. I always sign as son.You may view photos of me in the file titaled , there are 2 seperate familys contained in that file to save space in our support room files.Its a small world!

I am about to journey backwards and share some personal emotions, thoughts, and OPINIONS. What follows is a brief interlude with a middle aged adult with BPEI Type I who was born infertile.

I am 49 with BPEI Type 1. Finished menopause at age 38.I never conceived children. Consistantly had irratic cycles after the age of 13 and at the age of 26 cycled once per year or less.With night sweats,mood swings,classic menopuas symptoms but my age was wrong. My lack of cycles was not named or classified. But I was given diffrent medications to relieve symptoms. Not ever discussed professionally and connected nor investigated in conjuction with BPEI until the year 2000. Yes I told Doctors about BPEI and asked wayyyyyyyyyy back then if there was a connection. Call it an intuition. Science is learning and so are we.

These events USED to cause disharmony withen my soul. After a time I questioned the medical worlds affectability. I had been seen by "the best in the world" yet no one had prepared my parents or me about any physiological effects of BPEI other than the surgerys required to somewhat normalize my facial features.The Medical Professionals I seen in later days were not familiar with the syndrome and in one old document I have it is called "Lions Disease" even tho I told them I had BPEI.I could go on and on quoting events and my personal searching for answers. But thats not a healthy attitude for me personally to wear. Know I am a happy and content adult, however I used to think I could have been spared unecessary inner conflict, physological and psycological trauma, wonder, and to a wide ranged medical arena "grief". because I didnt know what my body was going thru. I did'nt fit the standard medical molds

for diagnosis. I was one who "fell thru the cracks" and it haunted me. Everything happens for a reason.

I have choosen to share when I can and (A)TO ENCOURAGE YOUNG PARENTS to ask questions and ask them to more than one circle of phyisicans and professionals, (B)document document document all you questions and results,© keep a journal of your results and emotions too and remain open and share with your family in a healthy manner , (D)always obtain copies of records of ALL appointments and surgeries. These may benifit you and them greatly now and in the future.

Some may want to know ALL ABOUT IT SOME DAY. You never know. Remain open to sharing with your siblings. Sometimes what we are lovingly spared as children by meanigful parents who just want us to "be as normal as possible" becomes questions as an adult.I speak for myself here.I compare it to the emotions of being adpoted. One has loving adopted parents but "searches because somethings missing" its quite a natural human phenomina for mutitudes of people. Fear andr doubt can be relieved and irradicated within understanding to the best of one ability........

Research and read thru the sites Rob and others posted and keep asking ,and document document document.......scrap booking is a popular hobby these days..........have fun with it!.......... son

Kati Graw <katigraw@...> wrote:

Hello,

In response to the infertility experiences....my name is , I am 39 years old and am the first in my family with BPES. I am not quite sure if I am Type I or Type II, here is my scenerio. I was married at 21 and have never been on birth control and after 18 years of marriage I only have one child, a son, who I gave birth to at the age of 24. I never had any idea that infertility went with BPES, so after having my son and not being able to get pregnant again for years, my husband and I went to specialists and went through artificial insemination (which did not work). Then I had major surgery because they said my tubes were blocked, but although they said the operation was a success I still could not get pregnant. We then went through IVF (Invitro) several times also to no success. I was producing only a couple of folicles, even on the heavy duty drugs they were injecting into me, while other women were producing 20-25 folicles. So

I do not know if this is due to the BPES or if it is due to some other medical reason. Through out I have had fairly regular menstruation cycles (although sometimes very heavy, and sometimes skipped).

But emotionally all of the failed attempts are very trying, and after all of the years of trying we are at peace with the fact that we will not have any more children. I consider myself very very lucky to have had my son (who also has BPES). I really believe had I not married so young and had I not immediately wanted children, I would never have gotten pregnant, as they say you are more likely to produce follicles at a young age.

Because none of the specialists ever associated the BPES with our infertility problems I do not know if that is what they are due to. I would also be very interested to hear other peoples stories regarding this matter. Have any of you had similar experiences? I agree with Hannah that not being able to have more children is a far worse fate then having the small eyes. I would love to hear stories from other women with BPES regarding this.

Ask Me <arlenevarela@...> wrote:

I have just recently learned the name of my condition. I am curious as to the infertility associated with BPES. Are there any women that can share their experiences in this regard? For the last 6-8 years I average 1-2 menstruations a year.

[Guest guest]

sadieben2000 <hannah.goodman31@...> wrote:

Hi,I'm 24 and learnt last year of the connection between BPES and infertility (or rather premature ovarian failure (POF)). I researched the subject to try and make some sense of how the two are connected and whether there is any way to determine if you're likely to have POF. As you're probably aware, there is a school of thought that subscribes to the idea that there are two types of BPES: type I and type II (imaginative titles!). The former is associated with POF and the latter is thought not to have any association. There is a test to determine whether you have type I or type II. This all sounds quite simple and straight forward, however, I came across an article dated 2003 in which it was reported that even if you have type II BPES you may still suffer from POF.This is an ever-changing

area of genetics and my only experience that I can pass on is go and see a geneticist who will advise you of your individual position. Try not to automatically assume that everything you read will be applicable to you and your situation – that in itself is no easy feat, I know. I have found the prospect of not being able to have children devastating – far worse than having small eyes.I hope that things work out for you and I know that you don't know me, but if you'd like to talk to someone please feel free to contact me.Hannah> I have just recently learned the name of my condition. I am curious > as to the infertility associated with BPES. Are there any women that > can share their experiences in this regard? For the last 6-8 years I > average 1-2 menstruations a

year.

[Guest guest]

BPES is genetically linked with the development of ovaries and

therefore males with BPES are not affected simply because they do

not have ovaries.

hannah

> > I have just recently learned the name of my condition. I am

> curious

> > as to the infertility associated with BPES. Are there any women

> that

> > can share their experiences in this regard? For the last 6-8

> years I

> > average 1-2 menstruations a year.

>

>

>

>

[Guest guest]

> BPES is genetically linked with the development of ovaries and

> therefore males with BPES are not affected simply because they do

> not have ovaries.

That's true as far as infertility is concerned.

According to one source I've read, men with Type I BPES have mostly male

children, while men with Type II have mostly female children. Or vice

versa (I'm too lazy to look it up tonight). That is " affected " , but in a

different, testicular rather than ovarian, and much less dramatic, way.

Rob

[Guest guest]

I was told that the infertility is associated with Type 1 BPES which is determined through genetic testing. just had her first birthday ( Yeah!! ) and they have told me that around age 10 before puberty, we should see an endocrinologist for an abdominal ultrasound and to address the fertility issues. From what I gather also which seems consistent with people posting in this group, it seems to be more premature ovarian failure in the late twenties, rather than complete infertility. Our geneticist also mentioned harvesting eggs before the ovarian failure to save for later in vitro fertilization. I don't know about all this, as is very young but it might be something to look into. Sounds costly also!?!

[Guest guest]

Currently there is no way to unfreeze eggs which have been stored

without destroying them. I'm sure though that by the time a lot of

the children mentioned in this group are adults the technology will

have developed.

Hannah

> I was told that the infertility is associated with Type 1 BPES

which is

> determined through genetic testing. just had her first

birthday

> ( Yeah!! ) and they have told me that around age 10 before

puberty,

> we should see an endocrinologist for an abdominal ultrasound and to

> address the fertility issues. From what I gather also which seems

> consistent with people posting in this group, it seems to be more

> premature ovarian failure in the late twenties, rather than

complete

> infertility. Our geneticist also mentioned harvesting eggs before

the

> ovarian failure to save for later in vitro fertilization. I don't

know

> about all this, as is very young but it might be something

to

> look into. Sounds costly also!?!

>

[Guest guest]

Hello

Good to read your story. Is very like my own. I was the first in my

family to have bleph, then only had one child also. Much trying for

more but that was 18 years ago now. I also had premature ovrian

failure & noone was able to tell us why all these things were

happening (or not happening!) Great to find this place & learn so

much. My daughter also has bleph & now we are concerned for her

fertility - hopeing to get some tests done this year, although she is

still in Australia at the moment. you did not say whether your child

has bleph?

Also to Leeanne, I`m sorry i never replied to your question asking me

if I had met the little boy here at Waihi Beach? No, I haven`t but I

have met his mother twice now, & I do have her name & ph no so will

make contact sometime. I`m planning on coming to Christchurch in

October to my folks 50th anniversary so we may have time to meet you

& your family??

Bye now

maree

> I have just recently learned the name of my condition. I am

curious

> as to the infertility associated with BPES. Are there any women

that

> can share their experiences in this regard? For the last 6-8 years

I

> average 1-2 menstruations a year.

>

>

>

>

>

[Guest guest]

Hi Maree....Definately keep us posted on your trip down here tho Christchurch, when you know your coming let us know and you can come over for a cuppa:)....Hope all is well with you all, talk soon.

Leanne....*CHCH*

-- blepharophimosis Re: BPES and Infertility

Hello Good to read your story. Is very like my own. I was the first in my family to have bleph, then only had one child also. Much trying for more but that was 18 years ago now. I also had premature ovrian failure & noone was able to tell us why all these things were happening (or not happening!) Great to find this place & learn so much. My daughter also has bleph & now we are concerned for her fertility - hopeing to get some tests done this year, although she is still in Australia at the moment. you did not say whether your child has bleph?Also to Leeanne, I`m sorry i never replied to your question asking me if I had met the little boy here at Waihi Beach? No, I haven`t but I have met his mother twice now, & I do have her name & ph no so will make contact sometime. I`m planning on coming to Christchurch in October to my folks 50th anniversary so we may have time to meet you & your family??Bye now maree> I have just recently learned the name of my condition. I am curious > as to the infertility associated with BPES. Are there any women that > can share their experiences in this regard? For the last 6-8 years I > average 1-2 menstruations a year.> > > > >