Just Diagnosed With AIS Syndrome!

[Ickle-Vix]

Hello, I am aged 18 and from England! I have just been diagnosed with AIS syndrome. I feel that I am coping with it all quite well. I just think that i need to speak to people with the same condition as me, i dont know how to go about this though? can anyone help?

-x- Ickle-Vix -x-

[miriam]

Hi Ickle-Vix,

For women with AIS I can recommend the AIS support group. You can find more information about that group here (http://www.medhelp.org/ais/). They can tell you were how you can meet other people with AIS. In the mean time, I would like to say :sign16: :applaudth

Groeten, Miriam

[prince....ss?]

Welcome to BLO!!!

I do believe we have a few folks here with AIS syndrome and some folks with other conditions as well. Feel free to ask ANY questions that come to mind. We talk about anything and everything around here.

Any meaning behind your log in name?

[happy]

hello!
I'm new here too, brand new!
I think we can help each other. I would love to talk about ais with you or any other blo member. Would you pm me? I'm young and european as well

@<hidden> miriam: spreek je nederlands?

[miriam]

@<hidden> miriam: spreek je nederlands?

Sorry folks, I have to switch to a REAL language now..

<DUTCH>Wis en waarachtig, wel!:smile: Jij ook? Waar kom je vandaan... (hihi, dit begrijpt bijna niemand op dit forum)</DUTCH>

Groeten, Miriam

[prince....ss?]

Welcome to BLO happy,

I do hope you find the answers you are looking for. Keep in mind you both need 5 posts or 5 days before you have full privileges. So 5 posts or 5 days each then you can PM each other.

Prince….ss?

[Priestess]

Sorry folks, I have to switch to a REAL language now..

<DUTCH>Wis en waarachtig, wel!:smile: Jij ook? Waar kom je vandaan... (hihi, dit begrijpt bijna niemand op dit forum)</DUTCH>

Groeten, Miriam

Dank goedheid voor babelfish :interesti

[happy]

<DUTCH>Wis en waarachtig, wel!:smile: Jij ook? Waar kom je vandaan... (hihi, dit begrijpt bijna niemand op dit forum)</DUTCH>


Hallo ,
Fijn om hier iemand te ontmoeten die nederlands praat.
Ik woon in belgie en ben volledig nederlandstalig :lol:
misschien tot later !
hou je goed,
groeten uit belgie :)

[Ickle-Vix]

Welcome to BLO!!!

I do believe we have a few folks here with AIS syndrome and some folks with other conditions as well. Feel free to ask ANY questions that come to mind. We talk about anything and everything around here.

Any meaning behind your log in name?

Erm Hello prince....ss! Yeh lol Ickle means small! although i am not small i like the word lol! :-) and vix is short for victoria! :-) so there u have it :-D

[Ickle-Vix]

Aww thanks for your help! Its all abit strange for me at the minute so i need all the help i can get! :-)

[Priestess]

Aww thanks for your help! Its all abit strange for me at the minute so i need all the help i can get! :-)

Ahh, Victoria. Helping is what we do best :happy45: Yes, life is strange for all of us, perhaps the best we can do is help each other muddle through it. How may we assist?

[Ickle-Vix]

I need to have an opperation soon which i am quite worried about! :-( and i have to take some kind of replacement hormone tablets after! which i am kinder hoping are not going to have side affects! :-)

[Priestess]

I need to have an opperation soon which i am quite worried about! :-( and i have to take some kind of replacement hormone tablets after! which i am kinder hoping are not going to have side affects! :-)

Ahh, I see. Is it a gonadectomy they have you scheduled for? That could be rather frightening. I know that I've been terrified of anesthesia. The hormone tablets shouldn't need to have side effects, besides giving you an adult figure. If you feel like they're giving you too much, you can always cut back a bit to where you're comfortable with it. It's reassuring to know that you'll have complete control over your estrogen levels, isn't it?

I seem to remember that for estrogen, patches and tablets dissolved under the tongue have the least side effects. And that a little progesterone once and again isn't a bad thing, it gives you the right scent and helps put your curves in the right places.

If you feel lonely while you're recovering, we'll all still be here to chat with. Even me :redface:

[fraulein_Maria]

I need to have an opperation soon which i am quite worried about! :-( and i have to take some kind of replacement hormone tablets after! which i am kinder hoping are not going to have side affects! :-)

>>> if you don't mind me askin, how old are you? you may wish to know that the timing of the removal is controversial. i have a friend who regrets that it was done so soon... waiting means you may get the chance to grow a few more inches in height. :)

preistess is right about the patch... lots fewer side effects.
AND, you only have to remember to change it once a week..... a great thing if your a busy gal. :)

but the biggest plus is that getting it by patch mimics a cycle.....

for many, the only reason to take the pills instead is because they are cheaper, but that doesn't apply to you across the pond. :)

[Ickle-Vix]

im 19 :-)

[Ickle-Vix]

Can anyone help by telling me the different methods of hormone replacement such as pills/patches and recomend which is best to be started off on!? thanks x:P

[Ickle-Vix]

Aww priestess thats for the support! :-) how long do you think it will take for me 2 recover from the OP? ive been told that its just day surgery and that i can go home the same day! will it be painful ?

[fraulein_Maria]

Can anyone help by telling me the different methods of hormone replacement such as pills/patches and recomend which is best to be started off on!? thanks x:P

>>> mein Gott! there are sooo many to choose from, that a comprehensive listing takes a few pages in the PDR (physicians's desk reference) and you may feel like you need a degree in chemistry to wade through it thoroughly.

but everybody's body is different, even among AIS'ers, so the patch or pill that works best for YOU in particular is the one you want......

so, the best (short) advise i can give, is to stay away from premarin (side effects) and take whatever formulation keeps your level from falling with any rapidity... its not the hormone (or lack thereof) that causes hot-flashes, but the drastic change in level.

build as much bone density as you can, while you can (milk and spinach ;)

And have fun! :) I hope you discover that having AIS is not the end of the world, and has some not so hidden blessings in it for you. :) check out the "grass is always greener thread" for laughs. :) <<<

[Ickle-Vix]

Can you explain this whole bone density thing! Im confused...ive had it tested...not got the results yet...wot vitamin is it (calcium) wb x ohh Pleaaaaaseeeeee

[miriam]

Can you explain this whole bone density thing! Im confused...ive had it tested...not got the results yet...wot vitamin is it (calcium) wb x ohh Pleaaaaaseeeeee

http://home.vicnet.net.au/~aissg/osteoporosis.htm
http://www.medhelp.org/ais/34_OSTEO.HTM

groeten, Miriam

[miriam]

Can anyone help by telling me the different methods of hormone replacement such as pills/patches and recomend which is best to be started off on!? thanks x:P

http://www.medhelp.org/ais/34_OSTEO.HTM

Groeten, Miriam

[Priestess]

Aww priestess thats for the support! :-) how long do you think it will take for me 2 recover from the OP? ive been told that its just day surgery and that i can go home the same day! will it be painful ?


Hi Vickie,
I don't know how long it will take. The only surgery I've ever had so far was something rather different. I've been told that for some people, recovering from a gonadectomy can take as much as a week, during which you should be careful in case of blood clots. And that there's sometimes swelling. I'm sure they'll let you have some pain medication, so hopefully you won't be suffering.

As for hormones, the links that Miriam gave seem accurate for what you'd need to avoid osteoporosis. Though it seems as though there's more to life than going with the minimal dose. A little extra might help with your figure, and be conducive towards feeling sexual.

In terms of dosages, patches are good for maintaining the steady level you'd need to avoid health problems, but pills are better for experimenting with what dosage is good for you. A tablet of generic estradiol/estrace dissolved under the tongue tends to be most efficient and trouble free. Anywhere between 1mg-2mg per day. If you swallow a pill instead of dissolving it then you're only getting 30% of it's estrogen, with the other 70% turning into estrone, which doesn't have much effect besides causing weight gain.

Definately avoid premarin or anything described as "equine" or "conjugated", nature intended those to be for horses, it isn't good for humans. Though doctors tend to push it because they are rewarded by the manufacturer.

Maria could tell you more about the benefits of progesterone.

Of course, listen to your endo's advice too ... :redface: unless he or she is an idiot like some of the endos I've had to deal with.

[miriam]

Though it seems as though there's more to life than going with the minimal dose. A little extra might help with your figure, and be conducive towards feeling sexual.

And now for the best kept secret... if AIS'ers want to have a better sex drive they only have to stop taking their pills for a couple of days. For other people testosterone is considered to be the most important factor for having a sex drive. Of course, testosterone doesn't work for women with AIS. This trick doesn't work for every woman with AIS. But it is worth a try :-D

BTW, too much estrogen is only good if you want to gain weight :sad_smile

Groeten, Miriam

[Priestess]

Ahh, I learn something new every day. I apologize for any misinformation.

Though I keep feeling weirder and more alone the more I learn. My moods being just as unresponsive to testosterone as yours are, but estrogen having the opposite effect.

[miriam]

Ahh, I learn something new every day. I apologize for any misinformation.

Though I keep feeling weirder and more alone the more I learn. My moods being just as unresponsive to testosterone as yours are, but estrogen having the opposite effect.

c'mon priestess, you don't have to apologize for helping other people. I'm sorry to hear that you feel weirder and more alone after something like my previous post. We are all individuals, we are all different. That's our strength and our weakness because it also means that everybody is lonely - but not alone. Even if we can't share the way our bodies respond to hormones, we can share our loneliness. ;-) / :sad: / :)

Groeten, Miriam

[Ickle-Vix]

at the moment i have a pretty unfeminine body so you are saying that when i start taking the hormone replacement my body will become more feminine and curvy.....ahhhhhh u meen im goin to loose my sex drive???? :-(

[Ickle-Vix]

Awww I really want to just thank all you guys for helping me so much....you have probally helped me more than the doctors I have seen! I seem 2 get embarresed when talking to people face to face about this. :boohoo:

[Ickle-Vix]

Im awful at spelling as you can probs tell by now! so i appologise for that

[Priestess]

at the moment i have a pretty unfeminine body so you are saying that when i start taking the hormone replacement my body will become more feminine and curvy.....ahhhhhh u meen im goin to loose my sex drive???? :-(

Hi Vickie,
For the feminine and curvy, well basically ... yes :redface: The right dose of progesterone is an important part of that too, though. I think what Miriam may have meant is that taking too much would lower your sex drive. You mustn't panic, if that happens to you, you could lower your dose and your drive would return. That effect is only temporary. While on the other hand, the feminization you'll get from taking more than you need will stay with you always, or at least a very long time. So you could take a higher dose for until you've gotten all the curves you want and then go lower. Or you could run things on a monthly cycle between high and low, with hormonal effects 2/3 of the time and better sex drive for the other 10 days. That would have even the keenest observer sensing you as very normal. But the possibilities are endless.

Awww I really want to just thank all you guys for helping me so much....you have probally helped me more than the doctors I have seen! I seem 2 get embarresed when talking to people face to face about this. :boohoo:

Ohh, thank you for saying so. We're all here to help, and between everyone here we have a great amount of combined knowledge. I agree, it is a slightly embarassing subject and it's easy to feel timid. But I'm sure that everything will go well for you. And in a year or two you'll probably smile about how worried you were. :grouphug0

-- Melissa

[Priestess]

I hope everything turned out alright for you Vickie :moon:

[jenny]

hi vickie. my name is jenny. i have cais. i was diagnosed 10 years ago, when i was 15. i haven't been on here much lately, and just read your posts. i hope all is going well with you.

[Ickle-Vix]

Hello Jenny! Yes im ok thanks! yourself?? how are you finding things...?

[jenny]

Hey, sorry I took so long to respond to your post. I don't always get on here often...Things have been good for me. I am a happy person. Having CAIS has not affected my quality of life in a negative way. If anything, it has been a blessing in many ways. It has forced me to look at myself and accept myself for who I am. It has helped me to look at the world in a new way. I don't make the same sort of assumptions about things or people the way I used to. I don't take things for granted. That's the positive stuff. It was hard at first. I questioned who I was...what it meant to be a woman...was I really a woman?...would anyone ever love me as a woman?...would a man want me since I couldn't have children? But these fears gradually subsided. Who I am is more than male or female. The knowledge that I had AIS didn't change the person I had always been. I have a husband who loves me with or without AIS. We don't plan on having children, so that's not an issue, but if I did decide to have a child someday, I could adopt and that is a special thing to do. So basically, I'm saying don't worry. Learn to accept everything about yourself, and you will do fine. I hope all is well with you.

[Ickle-Vix]

Can anyone tell me if I can get an Sexually Transmitted Infection/Disease. With this condition..! I may be sounding dumb but there is nowhere that the seman can go to make me infected? thanks

[miriam]

Can anyone tell me if I can get an Sexually Transmitted Infection/Disease. With this condition..! I may be sounding dumb but there is nowhere that the seman can go to make me infected? thanks
YES!!!!!!!!

Groeten, Miriam

[Ickle-Vix]

lololololol Thankyou x!

[Ickle-Vix]

Hello everyone! Just thought I would let you all know that I had the Gonadectomy yesterday! Everything went well. I am in so much pain though but I supose that can be expected.! I have been givin my first packet of hormone replacement and these are...PROGYNOVA 1mg Tablets (Estradiol valerate).! Can anyone give me any advice or information on these (if you have heard of them) Thanks :-)

[Priestess]

Hello everyone! Just thought I would let you all know that I had the Gonadectomy yesterday! Everything went well. I am in so much pain though but I supose that can be expected.! I have been givin my first packet of hormone replacement and these are...PROGYNOVA 1mg Tablets (Estradiol valerate).! Can anyone give me any advice or information on these (if you have heard of them) Thanks :-)

Hmm, only that for best effectiveness you should dissolve them under your tongue, which might take 10 minutes or so but is well worth it. Otherwise if you swallow it, your liver will eliminate 70 percent of the estradiol before it ever gets to your bloodstream. And the extra effort isn't good for your liver.

You have my best wishes while you're recovering. Hopefully you won't miss out on too much fun.

[Ickle-Vix]

ok well I have been swallowing them but ill disolve them from now on. You have been saying about progesterone... to help with a more feminine figure can this be explained in a bit more detail...eg dosages etc...! :-) I must be so annoying with one question after another..sorry if I am. Thanks for all your help everyone :-D :partysmil

[Priestess]

ok well I have been swallowing them but ill disolve them from now on. You have been saying about progesterone... to help with a more feminine figure can this be explained in a bit more detail...eg dosages etc...! :-) I must be so annoying with one question after another..sorry if I am. Thanks for all your help everyone :-D :partysmil

I got these normal ranges from http://www.aruplab.com/guides/ug/tests/0070110.jsp

Follicular: 0.2-0.8 ng/mL
Luteal: 4.1-23.7 ng/mL
Mid-luteal: 4.5-25.2 ng/mL

Postmenopausal: 0.1-0.6 ng/m

Right now after your gonadectomy, you're in the "Postmenopausal" category. So to be at a more normal progesterone level for a young woman, perhaps 10 ng/ml for example ... and with approximately 5000ml of blood in the average adult ... I think that means you'd need at least 50mg/day, which seems right because that's about the smallest size of progesterone tablet being offered for sale (50mg)

Though I'm not an expert, so it might be a good question to ask your endo about.

Basically, the advantages are that progesterone is required for the proper formation of milk ducts in the breast, so that you have actual breasts and not just fat. Prolactin is also required, but almost everyone has enough of that. The progesterone also helps to ensure that any weight you gain goes onto the right places for a woman, instead of onto the places it goes on men. And it does effect your body's scent.

Progesterone receptors are separate from androgen receptors, so I suppose there's a good chance of it working. Some endos believe that AIS'ers don't need progesterone because you don't have a uterus to need protecting from the estradiol. But sometimes there's a difference between what you absolutely need and what helps you.

[miriam]

Progesterone receptors are separate from androgen receptors, so I suppose there's a good chance of it working. Some endos believe that AIS'ers don't need progesterone because you don't have a uterus to need protecting from the estradiol. But sometimes there's a difference between what you absolutely need and what helps you.
Like many other AIS'ers I've used progesterone just to see what would happen. Well, nothing happened. I hoped I would get a bit more energy, but that didn't work. If you want great looking boobs and a more feminine figure you can ask your endo if he/she is willing to give you ethinyl estradiol. It is a bit more dangerous than the other kinds of HRT, but it works much better for young women with AIS. I started with 10 μg and that was enough to do the trick. Later on I switched to 1 mg progynova. Some people say that women with AIS need less estrogens to fully feminize than other women, because those other women are sensitive to androgens.

Groeten, Miriam

[Priestess]

I can't seem to find much medical literature linking androgen insensitivity to progesterone insensitivity, only a paper about one particular variety of ais, which was described as a mutation in the "fkbp52" gene. Just from curiousity, how much progesterone did you take? It isn't supposed to give one more energy, I don't think. Estinyl was considered dangerous, I'd heard, that being the reason it was taken off the market. It stayed a long time in the body without being eliminated, and estinyl levels couldn't be measured on a standard hormone test, and there were problems with blot clots and liver damage.