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Premature Ovarian Failure (POF)

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Premature Ovarian Failure (POF)

Postby nwtyng » Wed Oct 27, 2004 9:45 am

Hi,

I am 24 and I was just diagnosed with POF 2 days ago. It is devastating for me and my bf and I don't know what to do. :cry: My gynae gave me a "death sentence" on having babies and I don't even know the cause to this! I am prescribed with estrogel but I dare not start applying the medicine. I've been doing a lot of surfing on the web and some said that once you go on HRT, it's a way of telling your body that you are shutting off your body system to try to produce estrogen on its own and that also means my ovary will never recover! I'm desperately in need of a miracle! Can anyone tell me what I can do? Life will be incomplete if I can never have a baby of my own! HELP~ I need some advise.... I'm so very lost now... I don't even know which doctor I can go to over here.... :cry:

... bB
nwtyng
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Posts: 22
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Location: Penang, Malaysia

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Postby jill dickens » Wed Oct 27, 2004 9:39 pm

Hi Nwtyng,
I am so sorry to hear about your POF. It is a devastating thing and to be so young. What figure is your FSH (Follicle stimulating hormone)?. I am in a similar position my FSH was raised at 35 or that's when I found out during fertility investigations. I am now 40 and have just had a positive result with my first egg donor IVF cycle. It is a more difficult journey of course than with your own eggs but it can be successfully done. My advice is get as much info as you can, join Daisy Mail Web site for early menopause women. Time does help with this condition but I can't pretend it isn't a shocking diagnosis because it is. Also get your thyroid checked I found out I also have an under active thyroid. POF can be linked to auto imune disorders. Feel free to write and I will help all I can. Stay on this site though as it is such a huge support take care love Jill x
TTC nearly 9 years
Raised FSH
natural pg M/C, 12 months on Clomid +ve M/C
1st Egg Donor IVF Cycle Oct 04 +ve M/C my dream is over
Nov 04 Began the adoption journey
Nov 06 our beautiful baby girl has come home we were matched at just over 12 months
jill dickens
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Posts: 237
Joined: Thu Jul 01, 2004 9:33 pm
Location: UK

Postby jill dickens » Wed Oct 27, 2004 9:41 pm

It's me again, you should post on the general forum as well most people look there. Jill x
TTC nearly 9 years
Raised FSH
natural pg M/C, 12 months on Clomid +ve M/C
1st Egg Donor IVF Cycle Oct 04 +ve M/C my dream is over
Nov 04 Began the adoption journey
Nov 06 our beautiful baby girl has come home we were matched at just over 12 months
jill dickens
Regular
 
Posts: 237
Joined: Thu Jul 01, 2004 9:33 pm
Location: UK

Postby nwtyng » Thu Oct 28, 2004 10:57 am

Hi Jill,

THANK YOU SO MUCH for replying!! I felt so hopeless and it is great to hear from someone. My FSH is 79.4 mIU/ml. So that stands for Follicle stimulating hormone, I didn't know about that. The dcotor never bother to explain thoroughly what is this disease i'm having. I was just told that I'll never be able to have my own babies, I'll age very fast and have all sorts of health problems. I was too shocked to ask further, the only thing flashing in my mind is "I won't have my own babies?!" I don't mind aging or the health problems but I want my own baby! :cry:

I was prescribed with estrogel which I still haven't started applying. I don't want to start on any medication that potentially might damage my chances of conceiving without other confirmation. With such a high FSH, I guess I really won't get to have my own baby huh? :cry: What should I do???......... I don't even know which doctor to approach. My feel is most gynaes here are not experienced in such cases....

Btw, Jill, can you give me the URL to Daisy Mail website? I've posted a msg on the general forum as well as you advised. Thanks again Jill! & hope to hear from you again.
nwtyng
Newbie
 
Posts: 22
Joined: Wed Oct 27, 2004 8:44 am
Location: Penang, Malaysia

Postby jill dickens » Thu Oct 28, 2004 5:05 pm

Hi Nwtyng,
I am really glad you wrote back, I know how isolated and bewildered you will feel right now. Ok you need to get a refferal to a gyny specialist or womens hospital of some sort particularly for the reproduction side of things. You can have your own babies however not with your own eggs, which is in itself devestating, only time eases that one. You must get on a list for an egg donor it can be a lengthy business. I had a best friend who was a donor on my behalf which means, she donated to an unknown woman then in turn that put me to the top of a waiting list and I eventually had an unknown donor. You can use someone you know but it means both going through councelling. In this country donors have to be under 35 and preferably have had their own children so they have proven fertility. It is something that you just can't ask someone to do for you but if you have a friend, sister, cousin who affers theb say yes. It is quite a process for the donor to go through so it is not to be taken lightly. Also push with your doctor for a bone density scan, this is to check how your bones are callcium wise. I have just had one it is completley painless. Your bones loose callcium as your body is lacking because of the POF (premature ovarian failiure) lovley name don't you think!
I know this is bombarding you, I am just trying to direct you through this, I felt so alone for many years. One more point POF is often family linked, you need to ask what age your mum and Grandma were when they reached menopause and if you have sisters or cousins they should have an FSH blood check. My sister also suffers from it. But you are in no way a failiure, it's just something that has slowed down beyond your control. Other options for children are surrogacy and of course adoption which my partner and I will do if this cycle fails.
Web sites to look at
info@daisynetwork.org.uk
www.earlymenopause.com
www.pofsupport.org
www.surrogacy.com
obgyn.net
I'm not sure if they all work but give them a go. Take care and write whenever you like love Jill xx
TTC nearly 9 years
Raised FSH
natural pg M/C, 12 months on Clomid +ve M/C
1st Egg Donor IVF Cycle Oct 04 +ve M/C my dream is over
Nov 04 Began the adoption journey
Nov 06 our beautiful baby girl has come home we were matched at just over 12 months
jill dickens
Regular
 
Posts: 237
Joined: Thu Jul 01, 2004 9:33 pm
Location: UK

Postby Sue25 » Thu Oct 28, 2004 9:24 pm

Hi Nwtyng
sorry to here you news I also went though Premature menopause at 39
It came as a big shock as we were i the middle of i .v.f cycle at the time and it was the last thing I expected . Jill as given all the advice that I can think of,I also read a book called The premature menopause book by Kathryn Petras I found this help at a time when I didn,t know who to turn to.
Like Jill I have also just had donor IVF and have a positive result
I know that its very difficult time for you
Keep intouch the wed site is full of help and support
Sue xx
40 year old, DH 51 years young
1st IVF June 03 cancelled poor response to drugs
Premature menopause 39years old
2nd March 04 IVF donor cancelled
3rd sept/oct 04 IVF donor eggs +tive
Sue25
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Posts: 65
Joined: Wed Apr 30, 2003 7:16 am
Location: England Berkshire

Postby nwtyng » Fri Oct 29, 2004 1:31 am

Thank you so much Jill & Sue for the help and encouragement! you have been very helpful! There are very limited gyns available in Penang who are experienced in this area. I'm planning to walk-in to one fertility specialist centre (which is the one & only here that I know of) this saturday. wish me luck.... :wink:

Getting an egg donor will be the last resort... Over here, it would be so very difficult to get one donor cos of the conservative culture. Secondly, I don't think my bf's parents can accept that, needless to say an adoption! They are the very typical conservative Chinese family who would mind very much about having babies (prefer the baby is a boy :roll: ), and if the babies are "purely" ours. If they found out about my condition now, they would definitely have my bf dump me! That is the kind of pressure I'm facing and to be honest I'm totally not worried about my health. I'm just concerned over my fertility.

Btw, I do have slipped disc problem as well which is torturing me with the back pain. I guess God really is posting a lot of challenges to me... sigh.... :(
nwtyng
Newbie
 
Posts: 22
Joined: Wed Oct 27, 2004 8:44 am
Location: Penang, Malaysia

Postby jill dickens » Fri Oct 29, 2004 9:48 am

Hi Nwtyng,
I could cry for you, what a position with the added family pressures. I think it is a great idea to try the clinic on Saturday. Take a list of questions with you, if you are anything like me it all goes out your head when you get in there. I know exactly what you mean about the health sied being the last problem on the list all you can focus on is the fertility side. Please keepwriting here you must feel very isolated at the moment but there is a huge gang of us here and you can off load here. Please take care and take in small bits of information at a time love Jill x
TTC nearly 9 years
Raised FSH
natural pg M/C, 12 months on Clomid +ve M/C
1st Egg Donor IVF Cycle Oct 04 +ve M/C my dream is over
Nov 04 Began the adoption journey
Nov 06 our beautiful baby girl has come home we were matched at just over 12 months
jill dickens
Regular
 
Posts: 237
Joined: Thu Jul 01, 2004 9:33 pm
Location: UK

Postby nwtyng » Fri Oct 29, 2004 10:31 am

Hi Jill,

Thank you so much! You bet I feel a lot more "sane" to get to talk to someone. I have a thousand one unanswered questions in my head now. I guess my main question to the doctor would be: " I don't care what I have to do, just tell me how to get pregnant!" :wink: I fear so much that even IVF with a donated egg won't do me any good. I'm not so sure how advanced the technology here is. Well, I'll keep my fingers crossed.
and THANK HEAVEN I found this site & found YOU! :D

Btw, how are you doing there?
nwtyng
Newbie
 
Posts: 22
Joined: Wed Oct 27, 2004 8:44 am
Location: Penang, Malaysia

Postby jill dickens » Fri Oct 29, 2004 11:23 am

Hi Nwtyng,
The fact is you can get pregnant useing donor eggs Iam proof of that. It is a harder route there is no doubt about that and you would obviously have to look into provision in Penang. It may be that you would need to be treated in Kuala Lumpa. These are all difficult problems but not impossible. Also you don't have to tell people you are useing an egg donor, in my life about 15 people know anything about my fertility problems and that's after 6 years of trying for a baby. You have so much at the moment to take on board can you talk to your partner about it? It is so important to try to be honest with each other and be open this is easier said than done at times. Speak later love Jill x
TTC nearly 9 years
Raised FSH
natural pg M/C, 12 months on Clomid +ve M/C
1st Egg Donor IVF Cycle Oct 04 +ve M/C my dream is over
Nov 04 Began the adoption journey
Nov 06 our beautiful baby girl has come home we were matched at just over 12 months
jill dickens
Regular
 
Posts: 237
Joined: Thu Jul 01, 2004 9:33 pm
Location: UK

Postby nwtyng » Mon Nov 01, 2004 2:28 am

Hi Jill,

Went to another doctor for a second opinion last saturday and the doc found an egg with the size of 13.5mm! i'm a bit confused as the doctor do not believe that I can get POF at such a young age and he said I might have polycystic ovarian syndrome, but I do not have cysts? I am so very confused. He wanted to monitor the growth of that egg and suggested that he would like to do laporoscopic (i can't remember the name correctly) to stimulate the egg. i'm not so comfortable and have doubts of whether that is necessary for me. (the doctor kept asking if i'm covered by insurance... ) :?

actually i'm pretty worried if that is a healthy egg. but if it is, i'm thinking whether I can have the doctor to take it out. My partner is saying if we are to do IVF, maybe we can ask the doctor to do twins and gender selection - well, if that is possible.... :roll:
nwtyng
Newbie
 
Posts: 22
Joined: Wed Oct 27, 2004 8:44 am
Location: Penang, Malaysia

Postby jill dickens » Mon Nov 01, 2004 3:53 pm

Hi Nwtyng,
I am again so sorry that you are having such a rough time. I am not sure why your doctor has said you are too young to have started an early menopause, I really think you need a second opinion as sadly it can occur in young women. I am also afraid that you canot decide that you want to have twins via IVF, that is a lottery. In England the Fertility authority stipulate that 2 embryos can be put back, although I did have 3 put back but only because they were poor quality and had a low cell division. Niether can you in normal circumstances choose the sex of any potential baby. That whole area is known as designer babies and is very topical at the moment. I guess you are asking this because your DP family want a boy. I think it would be useful for you to maybe show your DP some web sites and info on this whole area as it is overwhelming at first and takes some time to grasp what it all means. I do hope non of this is too much for you to hear I am trying to get a balance between you taking in what you can in these early stages and not giving you flannel and wrong information, I know only too well how that does not help. Take care love Jill x
TTC nearly 9 years
Raised FSH
natural pg M/C, 12 months on Clomid +ve M/C
1st Egg Donor IVF Cycle Oct 04 +ve M/C my dream is over
Nov 04 Began the adoption journey
Nov 06 our beautiful baby girl has come home we were matched at just over 12 months
jill dickens
Regular
 
Posts: 237
Joined: Thu Jul 01, 2004 9:33 pm
Location: UK


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