Today I was diagnosed with AIS. I'm 24 and don't have any children. I'm trying to learn as much as possible. I read through some of the discussions before joining and they gave me more questions to ask my doctor. So I figured joining the discussions would be even better. Any pointers you could help me with would be ever so gratefully appreciated. I'm really scared about this, but am also trying very hard to keep a level head and think positive.
I'll be going in for a cold cone biopsy in a couple weeks. I'm very disturbed that the alternative, a hysterectomy is also recommended for this diagnosis. There seems to be such a large gap between the two extremes of biopsy and removal.
Any information or words of wisdom would help put my worried mind into the right perspective.
I'm sorry that you have a need for this board but I'm glad you found us. The women are great and boy does it help when you're not alone. There is a woman that visits the board frequently, she's great and she has AIS as well so the two of you can certainly share stories.
I'm sure your head is spinning right now but I'm confident you will find some comfort with the board. Women check and write at all times of day or night and on the weekends as well. So whenever you're feeling the need...please post.
You will definately be in my prayers and thoughts. Take care and someone else will stop by soon with more information.
Mikayla, I was diagnosed with AIS about 1.5 months ago. I had my cold knife cone the first week of April. Recovery went really well. After being home 1.5 days I was ready to get out and do something. I got stir crazy.
Feel free to ask me whatever you wish. You can also search for my posts (click on my name and select something like "other posts by").
I don't write the following to scare you because our situations are quite different, but I want to tell you a bit of my history. I am 44 and do not have children (partially by choice and partially by chance). My cold knife cone upgraded by AIS to endocervical adenocarcinoma Ia1. As scary as that sounds, I am very fortunate that the doctors found this so early.
I'm not sure what else to say right now. I am on my own roller coaster that has been flying over the tracks without any brakes, so I'm not able to offer up much right now. I just want to let you know that there are many wonderful women on this site. Please feel free to ask anything. We'll do our best to answer! (((hugs and prayers)))
I too, am 24 and have taken a ride on this rollercoaster. I know how scary, and frustrating it is to have to deal with these things.
Like MommyandWifey said, you've come to a board with lots of caring and knowledgeable women, and I know they'll be a very informative source for you. I agree that it is pretty disturbing that a hysterectomy is included in the treatments in some cases, especially at 24, when you have no kids.
I myself, have no children and I just recently got my cone biopsy results back which concluded that they seemed to have removed all that was suspicious.
Unfortunately, I'm at higher risk for what I just had removed, returning, because I'm HPV positive, have already had this problem, and I smoke. Realistically speaking, I know at some point it will present itself again, and of course you can only have so many treatments before they decide to do a hysterectomy, and given the facts about me personally, I believe I'll have to have one sooner than I would like.
I wish you the best doll, and you're not alone. As I stated before, there are lots of wonderful women on this board to help answer any questions you may have, or to just listen, myself included. Although, I'm not as educated as some of the women on technicalities concerning the subject of cervical issues, I would like you to know that I'll be happy to share any information I might have, as well as my own personal experience with you. GOOD LUCK!
Im 39, no kids and also just diagnosed with AIS... and like you I found this place looking for answers...its most helpful to have soo many others out there in the same situation as you.... though I have to say, sad at the same time that soo many are afflicted!
My cone was a cold knife and it was also very easy, as others have said.
My results are putting me at Stage 0.... but my margins were not clear- SO....
we are going to repeat the cone in a few weeks........
My approach is designed around trying to maintain fertitlity for at least the next year to allow me the chance to conceive....if not successful ( or if my next CKC comes back again with margin involved)... then hysterectomy is the only reliable option...
GOOD LUCK TO YOU!
Thank you for all the well wishes. I'm so glad to find this community of women. I've been reading through your posts and they've been super helpful. They've given my learning curve a direction which makes things so much easier and waaaay less scary. I'm composing a giant list of questions to ask my doctor. He'll have his work cut out for him!
One question i'm going to ask him, but I'm also curious what you ladies think (and I hope this isn't new thread worthy); When is it appropriate to seek the opinion/advise of Gyn/Oncologist? Should I wait till after the results of the cone biopsy? Or if I have glandular AIS should I already be speaking to one?
All I can say is thank you. Thank you for being there and being your wonderful strong selves.