looking for people to talk to!

[imysworld]

Hello my name is Imogen, I was told about this forum from a person on facebook.

Since I was diagnosed with CAIS about a year and a half to two years ago I have trying to find peoople to talk to, I have gone on the ais support group just need to pay the money, but was wondering if there was anyone else 19 and living in the uk, my doctors sounded like they had not ever heard about it in cornwall so I'm guessing there is no one down here. I have spoken to one other persn from australia!

I feel as if it has ruined my life as I lost all my friends and I'm strugglinh with the hrt

So if anyone wants to talk please message me back :-) imogen

[miriam]

Hi Imogen,

This weekend the AISSG-UK had their annual meeting in London. That would have been the perfect place to meet other women with AIS. I'm quite sure the AISSG-UK can help you to meet up with others. Unfortunately they only meet once a year as it isn't easy to find volunteers to organize the meetings.

I'm rather sure talking to other women with AIS will help you to understand being diagnosed with AIS is not the end of the world. As a matter of fact, you are still the same person. The diagnosis may have changed your view of yourself, but it has not changed the person you are.

That being said, I also think AIS sucks. Last week I was admitted to the hospital for four days because of health issues unrelated to AIS. That is just one of those occasions you understand you are 'different'. With every doctor I had to explain what AIS is and why I'm on HRT. I'll never get used to that.

I'm sorry I can't help you much further at the moment.

Groeten, Miriam

[Kailana]

first I must say, I am deffinately not AIS, but cross post often when new members post intros.

There are several AIS'ers here who post off and on and luckily Miriam has allready done so.

She is awesome and does alot on here.


I hope others will see your post and say hello, but for now I just wanted to say welcome to bodieslikeours its a unique place generally the people who post the most here are those of us in the world who have the conditons considered or called Intersex, or DSD, or Miriams Variation of Human Reproductive Organs <--- something like that.

welcome again and maybe a few will be kind enough to talk with you in greater detail.

[Wyn]

Imogen!... While I haven't seen her here of late, I know that Kate-pixiecat is in England... but, as for how close she is to you, I just don't know... I IM her on a regular basis. Plus, there Certainly are others around... just that so many who have been here, sorta 'drop out of sight'... I come on once in a while, just to keep up, but, it's hard sometimes to continually hear about the ongoing problems so many of us seem to have... I have enough on my own plate to deal with as it is. I'll be certain to let her know about you.. in case she doesn't respond on her own!

Denise

[JOS]

I just wanted to say hi and to reassure you that you are not alone.

I also have cAIS and struggled (well still struggle sometimes actually) with HRT.

Also, I'm afraid you will become quite familiar with having to explain your condition to doctors and just like Miriam said, I still haven't got used to it.

Please try to keep looking for things to be positive about otherwise upsetting events can become overwhelming.

:beer:
Jos

[Aseras]

Hi Imogen.

I'm not AIS if anything I'm the opposite and just too sensitive to testosterone. I'd be glad to talk with you anyways. I know a lot about hormones. I think you'll find you'll pick up a lot too out of necessity. It's frustrating dealing with doctors who don't know what to do with someone who was basically a footnote in med school and something they have never encountered before. You certainly have a difficult road ahead and I wish you the best. The best thing you can do is to research and educate yourself. Seek as many opinions and resources you can and be willing to make doctors listen to you, what you want and have the literature handy to back up your claims. Don't be afraid to say no. It goes a long way. Best wishes for a difficult journey.

[spacegirl]

Hello Imogen, I'd enjoy talking too, if you'd like. I don't have cais either, but nothing says you must surround yourself with yourself. There was a time when they thought they could fix my problems with the kind of hrt you're probably struggling with. Were they ever wrong.

[Laura Robison]

Hi Imogen,

I don't have your condition, but I'd be glad to talk with you. This is a nice place where people with a variety of conditions can support each other.

Laura

[fraulein_Maria]

[QUOTE=miriam;20479]Hi Imogen,


That being said, I also think AIS sucks. Last week I was admitted to the hospital for four days because of health issues unrelated to AIS.

>>>> are you ok now Miriam? If you wanna talk (or scream ;) i'd be happy to listen.

Welcome Imogen! Welcome back JOS!

Another non-AIS'er here but a CAH gal, your most thorough opposite. But, we IS people of all stripes have many things in common. You and i have not departed the ranks of womanhood simply because we are extra-ordinary. :) As Miriam mentioned, it can suck. But thankfully it doesn't suck all the time. And an AIS friend saved my life once. I had an adrenal crisis, but she kept her head and shoved a tablet into my mouth while i was non-compus mentus. I hope i've helped her some too. <<<

With every doctor I had to explain what AIS is and why I'm on HRT. I'll never get used to that.

>>> are they ALL that stupid (or sexist it seems) Miriam? not doubtful of your word, i'd just like to think that there are SOME doctors SOMEwhere that get it. I've never gotton used to stupidity (and sexism) in folks who should know better either.

Do you know how i FINALLY talked my primary into refering me to a CAH doc?

QUOTE "do i have to F@<hidden>#$ing kill someone in some gruesome fashion before anyone will believe i'm suffering from T poisoning?" UNQUOTE

I don't suppose that would play well in England though. ;) <<<

I'm sorry I can't help you much further at the moment.

>>>> i hope you feel better soon Miriam. My prayers be with you. <<<

[imysworld]

Thank you for messaging =]

If anyone wants to talk, i am on msn xx-dance-imy-dance-xx@<hidden>

just i dont really remember to check the website, i dont have a computer so i only go on at work.

xxx

[PAISWoman]

Thank you for messaging =]

If anyone wants to talk, i am on msn xx-dance-imy-dance-xx@<hidden>

just i dont really remember to check the website, i dont have a computer so i only go on at work.

xxx

Have you thought about joining rareorchids? It is an all AIS support group site and they have very strong standards who they let into the group. I've been apart of that group for about a year now, although my post have been very rare and on occasion I meet up with other girls that apart of that group for a girls night out.

I don't cAIS but I have pAIS and I am more than willing to talk with you if you need someone to talk too. Just pm me if you want to talk further.

:beer:

[imysworld]

Have you thought about joining rareorchids? It is an all AIS support group site and they have very strong standards who they let into the group. I've been apart of that group for about a year now, although my post have been very rare and on occasion I meet up with other girls that apart of that group for a girls night out.

I don't cAIS but I have pAIS and I am more than willing to talk with you if you need someone to talk too. Just pm me if you want to talk further.

:beer:

i looked for that support group on google and nothing came up, do you ahve a link?

[spacegirl]

Imogene, just based on 3'rd party information, Last year I heard from a girl I once knew in highschool. I don't know what the England equivalent of highschool is. She had complete ais with proof and everything, I never knew. She always seemed as normal and no more messed up than everyone else. Those were messed up times for mostly everyone.

I was told that she joined the rare orchids forum, wherever that is. And then left because they were all nasty and mean as hell. At the one time when she really needed some supportiveness, they tore her down pretty bad. It was sometime later when she attempted suicide.

Go there if you like, but maybe they should call themselves "steel orchids"

[PAISWoman]

http://www.indiana.edu/~ais/

Let me know if I can be of any help.

[imysworld]

Its american! I live in the uk, i want to talk to people in the UK.

But thanks anyway

[imysworld]

Imogene, just based on 3'rd party information, Last year I heard from a girl I once knew in highschool. I don't know what the England equivalent of highschool is. She had complete ais with proof and everything, I never knew. She always seemed as normal and no more messed up than everyone else. Those were messed up times for mostly everyone.

I was told that she joined the rare orchids forum, wherever that is. And then left because they were all nasty and mean as hell. At the one time when she really needed some supportiveness, they tore her down pretty bad. It was sometime later when she attempted suicide.

Go there if you like, but maybe they should call themselves "steel orchids"

Im not going to join as it is american, but thank you for the warning

[Aseras]

Its american! I live in the uk, i want to talk to people in the UK.

But thanks anyway

Who cares where they are on the internet? If you are looking for real life stuff, it's going to be considerable more complicated and "risky".

It sucks to be "alone" Most of us are so rare that the doctors have never seen us, and there's good chance we may not find another person like us in real life without some serious travel involved.

[spacegirl]

I can see why it would be useful to have a peer group of other women with the same concerns and medical needs. And other englishwomen would tend to have more of the same concerns and culture than women in other countries. But if ais is as rare as they say, so there's only a few thousand in all of north america, dividing that by the smaller population of England might not leave too many people in Cornwall to chat with. And maybe some of them don't want to be open on the internet, what with the british government's big brother technology and all.

[miriam]

I'm a member of three AIS groups:

Interchat - Yahoo group for people who have met at the AISSG-UK meetings

AISPeople - International Yahoo group with roots in Australia and the USA

New Rare Orchids - linked to the AISSG-USA

These groups are 'by invitation only'. The best way to get an invitation is to attend a meeting of the AISSG-UK (for Interchat) or the AISSG-USA (for New Rare Orchids). Many AIS Support Groups ask for some kind of credentials to prove you really have AIS, e.g. a short introduction of yourself in which you describe how and where you got your diagnosis. It's a pity this is necessary - every now and than people without AIS try to join our support groups. :-(

BTW, the New Rare Orchids group is NOT the "steel orchids" group spacegirl mentioned :-)

[spacegirl]

Oh, was there an old rare orchids group to be not as friendly?

Or does this mean that they just decided to cause emotional distress to a random newcomer who happened to be her?

[miriam]

Oh, was there an old rare orchids group to be not as friendly?

Or does this mean that they just decided to cause emotional distress to a random newcomer who happened to be her?

I don't know. I've never been a member of the old group. Maybe there was someone there who was as witty and satirical as well as eloquent as you just tried to be.:devil_smi

It has no use to accuse people of another group. They can't defend themselves and we don't know what has happened.

Groeten, Miriam

[spacegirl]

No, I wasn't trying to be any of that. Wit and satire are pointless to me. No one's ever called me eloquent before. My comments were just what they meant at face value.

I asked if there was an old rare orchids group because I don't know the answer to that question. If there was an old group that would explain the difference between what she said and what you said. She didn't say when this happened to her.

The only other explanation is that you are generally nice to each other but sometimes pick on random people. That would be a part of human nature.

I was not accusing your group. I was warning Imogene, in case she is really as innocent as she sounds.

It looks like you're trying to imply that I am she. That's not so. She's not even my friend, she was just in my a few of my classes a long time ago. We didn't keep in touch. She just talked a lot about herself.

I don't know exactly what was said. She didn't show me her messages. From the sound of her, she wasn't so sweet or nice anymore. If she ever was. From the sound of things, you aren't any sweeter or nicer. I believed her partly because I once chatted online with someone named K* who said she had ais, and K* was a real female dog.

And for the record, because I exchanged some words with paiswoman. I've never tried or wanted to be a member of ais support groups. There is no benefit in belonging to someone else's support group. I've never had ais, never thought I had ais, I've never wanted to have ais. I don't envy you. It's hard enough being who I am really am without adding wishing for someone else's problems. Just like I wouldn't expect to see you on any of the forums for cah, because you wouldn't have any reason for being there.

I don't know. I've never been a member of the old group. Maybe there was someone there who was as witty and satirical as well as eloquent as you just tried to be.:devil_smi

It has no use to accuse people of another group. They can't defend themselves and we don't know what has happened.

Groeten, Miriam

[miriam]

You've seemed to have missed the :devil_smi at the end of my remarks. That being said I think your original post was not really friendly:

Oh, was there an old rare orchids group to be not as friendly?

Or does this mean that they just decided to cause emotional distress to a random newcomer who happened to be her?

Two options: an unfriendly old rare orchids group and a group that causes emotional distress to a random newcomer. That doesn't leave much room for any other scenarios.

First, I'm not involved with the Rare Orchids group, so I can't speak for them. I have no idea what has happened with your friend. Second, even if I would be a member of that group I would not disclose any information from that group here. Third, the information on how to join the groups was addressed to imysworld, not to you.

BTW, I have no idea why you think I would think you are somebody else?

Groeten, Miriam

[The Female Eunuch]

Miriam wrote: You've seemed to have missed the :devil_smi at the end of my remarks. That being said I think your original post was not really friendly:

can I ask what the red devil symbol means?

[Kailana]

you know if whatever groups that people go to, there is always those who find offense where none is intended.

for many even BLO there are times when i dont mean too offend anyone yet still it does happen. For myself I know sometimes i drop words or short phrases and what ends up being written sounds or read much harsher then I had intended. Sometimes my thoughts don't match the words i use to express how I am feeling at the time I am responding to some posts.


see I think people really need to stick around in a group for awhile, before they can really understand how supportive that group can be. often only parts of responses are used to make assumptions when the entire thread is not understood and that can lead to alot of missunderstanding.

I know in general I write a great deal about myself, that happens I believe because I am here mostly for myself. Yet every now and then I know or am told that I do write something that another can learn from.


always keep an open mind and if there is ever a time to question what someone wrote then ask them for clarification.

I have actually heard similar rumours open the rare orchids AIS support group, but as I am not a member and have never been invited not that i want to be, different issues for me then for them, I am sure they are supportive with members and who knows could be someone wrote something that was not kind to that person. you never know second what was actually said or written.

[pseudonymous]

Hi

Saw your post about looking for people to talk to and I am too! Only joined yesterday but everyone seems lovely - someone pointed me to this board and said you we also 19! I am from Yorkshire in the UK. Feel free to message me if you want to chat.

Sara x

[imysworld]

Hi sara I'm always looking for people tochat too, nice to know someone the same age over here with it too =] x

[NoSJack]

I'm 25 live in London and have CAIS - this is the first time I've been on this site...I've known about my condition since I was 7 - an issue that caused a few emotional problems during my teenage years (angst over sex and boyfriends etc) but I have to say, it's not the end of the world. I know it may feel like a complete shock to your system to find out in your later years, but it's true - we're the lucky ones...we don't have periods, less hair to worry about, better skin - and no chance of any unwanted pregnancy.
If you want to IM, just get in touch - I'm happy to talk to you online about any issues that are doing your head in and give you my story if it helps...
hope you're ok
Amelie

[Olim]

I would like to communicate too. I left my MSN contacts in my profile.
In case of anything, its oo82 at live dot ca :)
:wave1:

[tonyiroc]

Hello, intersex born here with PMDs,,I have been same for years but doing better and ahve meet some good friends and have been able now to open to some personal friends as well,,,write me anytime.....tony ps im on facebook as welll

[imysworld]

I'm 25 live in London and have CAIS - this is the first time I've been on this site...I've known about my condition since I was 7 - an issue that caused a few emotional problems during my teenage years (angst over sex and boyfriends etc) but I have to say, it's not the end of the world. I know it may feel like a complete shock to your system to find out in your later years, but it's true - we're the lucky ones...we don't have periods, less hair to worry about, better skin - and no chance of any unwanted pregnancy.
If you want to IM, just get in touch - I'm happy to talk to you online about any issues that are doing your head in and give you my story if it helps...
hope you're ok
Amelie


Hey

Thanks

im fine now, but sometimes i just have down days, when i just think about it the whole time and feel down, my msn is xx-dance-imy-dance-xx@<hidden> xx