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Cancer: Cervical & Ovarian Message Board

have stage IV endometriosis and recently dx'd with AIS

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Old 07-26-2011, 06:52 PM   #1
Join Date: Jul 2011
Location: Boston, MA
Posts: 1
pdoodle HB User
have stage IV endometriosis and recently dx'd with AIS

Hi all,

I am 29 and started getting pap smears at the age of 18 and never had a problem. i had abnormal results from my pap last month (June) and had a colposcopy done almost two weeks ago (with a dermal punch/biopsy). My gyn told me that there was just one little suspicious spot and she didn't suspect it would be anything to worry about/my body would more than likely shed the virus in the next few months.

Well, cue my shock when I got a call from her office last week saying she was absolutely floored because my results came back as "Severe dysplasia and adenocarcinoma in situ."

i am near Boston and I am seeing a gyn/oncologist this Friday at Mass General Hospital to discuss the next steps.

My questions are as such:

I have had two laparoscopic procedures to treat endometriosis. The first was in 2009 and was diagnostic, confirming i did indeed have Stage IV Endo (fallopian tubes kinked, ovaries attached to sides of uterus/bowels, large adhesions, etc.) I had another lap this past February through Brigham and Women's Hospital by a reproductive surgeon (last time was my regular gyn). He confirmed the original diagnosis and was also to able to tell me that my fallopian tubes, while kinked, were clear, meaning I could theoretically conceive and carry a child.
---I have never had actual issues with ovulation or with my periods themselves (not heavy/unpredictable, etc). They have always been incredibly routine and "normal" save for my atrocious cramps.

----Because I have the endo "working against me," so to speak, does this mean my chances of being told I need a hysterectomy are higher than if I didn't? (I realize this question may not be able to be answered by anyone here). Does that also mean that because my ovaries are somewhat fused to my uterus, they'd be more likely to do a complete instead of simple hyster?

------Has anyone ever had a dx of AIS but was told it was actually endo?

------My gyn said that the oncologist will probably do a CKC and go from there. I thought that what she said was if it continues to be AIS, then they remove the area. But, if it is actually invasive adenocarcinoma, a hysterectomy is the next step. Is this correct or would AIS also warrant a hysterectomy?

I guess I'm just really overwhelmed, mostly because I think the endo adds another element to it and I just have a "bad feeling."

If anyone has had a similar experience your words are GREATLY appreciated.

thanks so much!!!

Last edited by pdoodle; 07-26-2011 at 07:00 PM.

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