Guest guest Posted April 17, 2010 Report Share Posted April 17, 2010 Hi, I am Pam, a new member. I am 28 and from Cork, Ireland. I have not yet been officially diagnoised, but I am 99% sure. I am currently waiting for a genetic consult to try and get some answers. In the mean time, I just want to know if I am the only person who looks like me cos all the photos show relly cute kids and any adults don't look like I do. My bio-clock is ticking so loud that my head hurts, I have been to a Gynae who diagnoised me with ovarian cysts, which resolved themselves. However, now my periods are 3 months apart and i was just wondering if anyone else has had this? Any feedback would be soooooooo welcome, thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2010 Report Share Posted April 17, 2010 Welcome Pam, Hopefully this group can give you some insight, there are quite a few adults in the group with BPES but that have not posted pictures, or some pics may be outdated, If you are comfortable feel free to put up a picture of yourself in the photo section. We hope you get your results soon so your questions finally get answered from a medical perspective. In the mean time feel free to post any and all questions you have, there are quite a few ladies in the group that have some great answers to your gynaecology questions Tonikka (Lynden) Edmonton CANADA --- In blepharophimosis , " hurleypamela11 " <hurleypamela11@...> wrote: > > Hi, I am Pam, a new member. I am 28 and from Cork, Ireland. > I have not yet been officially diagnoised, but I am 99% sure. I am currently waiting for a genetic consult to try and get some answers. In the mean time, I just want to know if I am the only person who looks like me cos all the photos show relly cute kids and any adults don't look like I do. > > My bio-clock is ticking so loud that my head hurts, I have been to a Gynae who diagnoised me with ovarian cysts, which resolved themselves. However, now my periods are 3 months apart and i was just wondering if anyone else has had this? > > Any feedback would be soooooooo welcome, thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2010 Report Share Posted April 17, 2010 Hi Pam Welcome Yes I agree, I hope you get some answers with your results. I have BPES, and have had children, but my periods have always been really weird!! I do know there are 2 types for women. I am not an authority on this at all, but I know if you look back on the posts there are a few from Shiren that explain this difference. Please feel free to post your photo, we dont have any on there, just because I am no good at techie stuff!! Me and my daughter have BPES, my son doesnt. Just know that if you do have BPES, we are all here, with similar eyes and experiences. It is very rare, so the chances of having someone around with it is rare, unless its in the family of course. I have met a few people with BPES most through this network, but one child when I was on holiday. Let us know how you get on with your gen, testing.. Other women on the site who have had similar experiences to you Im sure will respond too. Clare Teale Herts UK From: Tonikka <lyndenhunter@...>Subject: blepharophimosis Re: New Member with Questionsblepharophimosis Date: Saturday, 17 April, 2010, 17:46 Welcome Pam, Hopefully this group can give you some insight, there are quite a few adults in the group with BPES but that have not posted pictures, or some pics may be outdated, If you are comfortable feel free to put up a picture of yourself in the photo section.We hope you get your results soon so your questions finally get answered from a medical perspective. In the mean time feel free to post any and all questions you have, there are quite a few ladies in the group that have some great answers to your gynaecology questionsTonikka (Lynden)Edmonton CANADA>> Hi, I am Pam, a new member. I am 28 and from Cork, Ireland.> I have not yet been officially diagnoised, but I am 99% sure. I am currently waiting for a genetic consult to try and get some answers. In the mean time, I just want to know if I am the only person who looks like me cos all the photos show relly cute kids and any adults don't look like I do.> > My bio-clock is ticking so loud that my head hurts, I have been to a Gynae who diagnoised me with ovarian cysts, which resolved themselves. However, now my periods are 3 months apart and i was just wondering if anyone else has had this?> > Any feedback would be soooooooo welcome, thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2010 Report Share Posted April 17, 2010 Hi Pam, since March last year I'm a member of this group - there are so many helping people over here - thank you all once again! Thanks to this group I've learned a lot about BPES & relating POF, so I'm sure this group will provide you with all needed information and even more needed in most cases - support and confidence. I'm writing because I'm living in Cork too I'm 29 and currently dealing with some fertility problems - not yet POF but close, every day closer...Feel free to contact me directly. Kasia2010/4/17 hurleypamela11 <hurleypamela11@...> Hi, I am Pam, a new member. I am 28 and from Cork, Ireland. I have not yet been officially diagnoised, but I am 99% sure. I am currently waiting for a genetic consult to try and get some answers. In the mean time, I just want to know if I am the only person who looks like me cos all the photos show relly cute kids and any adults don't look like I do. My bio-clock is ticking so loud that my head hurts, I have been to a Gynae who diagnoised me with ovarian cysts, which resolved themselves. However, now my periods are 3 months apart and i was just wondering if anyone else has had this? Any feedback would be soooooooo welcome, thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 Hi Tonikka, Thanks for your reply! I'll keep ye up to date with all my medical questions. Thanks to everyone for making me feel so welcome Pam > > Welcome Pam, > > Hopefully this group can give you some insight, there are quite a few adults in the group with BPES but that have not posted pictures, or some pics may be outdated, > > If you are comfortable feel free to put up a picture of yourself in the photo section. > > We hope you get your results soon so your questions finally get answered from a medical perspective. > > In the mean time feel free to post any and all questions you have, there are quite a few ladies in the group that have some great answers to your gynaecology questions > > > Tonikka (Lynden) > Edmonton CANADA > > --- In blepharophimosis , " hurleypamela11 " <hurleypamela11@> wrote: > > > > Hi, I am Pam, a new member. I am 28 and from Cork, Ireland. > > I have not yet been officially diagnoised, but I am 99% sure. I am currently waiting for a genetic consult to try and get some answers. In the mean time, I just want to know if I am the only person who looks like me cos all the photos show relly cute kids and any adults don't look like I do. > > > > My bio-clock is ticking so loud that my head hurts, I have been to a Gynae who diagnoised me with ovarian cysts, which resolved themselves. However, now my periods are 3 months apart and i was just wondering if anyone else has had this? > > > > Any feedback would be soooooooo welcome, thanks > > > Quote Link to comment Share on other sites More sharing options...
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