Hysterectomy Support Group
A hysterectomy is the surgical removal of the uterus, usually done by a gynecologist. Hysterectomy may be total (removing the body and cervix of the uterus) or partial (also called supra-cervical). Although there are conservative alternatives, hysterectomy is performed for uterine fibroids, pelvic pain, pelvic relaxation, heavy or abnormal menstrual bleeding, and cancer.
My name is Nicole and I'm 36 years old. I was diagnosed with endocervical Adenocarcinoma in Situ in July of 2016 (in a biopsy) and got a LEEP procedure that showed clear margins (and no AIS in the specimen.) However, my doctor has recommend a hysterectomy as the "standard procedure" and the other two doctors I have seen after her say the same. I am super frustrated because they have been acting like this is no big deal, but I don't want to do it. Like REALLY don't want to do it. I love my uterus and I love my periods and this has nothing to do with having kids or not (I don't have any, but don't really care to either.) I feel frustrated that fertility seems to be the only thing that anyone seems to care about regarding whether or not to get a hysterectomy. I don't want to lose a part of my body that regulates quite a bit of stuff, kids or no kids!
I have pretty much been crying hysterically since I got the news (so about three months now.) I don't know where to turn. I feel like a crazy person. Every time I see a movie or a woman on the subway, I wonder if she has her uterus or not. I've become obsessed.
Granted, there is a chance that this will turn into invasive cancer at some point if I don't remove it. (With AIS, there can be something called "skip lesions" so there is no way to say if they got all the AIS out.) But at this point, I sort of feel willing to risk it. I am super diligent with doctors appointments and plan on going every three months. Pretty much everything I have read about hysterectomy sounds beyond awful. Like, at this point I really can't dicern if cancer or a hysterectomy is worse.
Tonight I went to a new gyno and could not stop crying. I told her that I need some emotional support thorugh this and she told me that I was "over-reacting" and that I should "think about the fact that I don't have cancer and be happy." In the next sentence, however, she stated that they "can't really tell me if there is not more AIS in me at a higher seat." How can a person say one thing and then the other in the same breath?
I'm sick to death of wondering if I have cancer or not, being told that I'm "lucky" and being made to feel like a whiny brat becaus this is affecting me so much.
I am an American overseas and I feel like I have no where to turn. I don't know where to find support and I just want out of here.
Thank you for listening.
I am American and live in the UK, whereabouts are you?
Bless you, and hope all goes well for you.
I'm in Germany. I'm sorry to hear that you ran into some issues after your OP. I hope that the visit with your surgeon goes well and things get sorted.
I'll be thinking of you.