VAIN after hysterectomy and clear paps for multiple years

Hi! This is probably going to be long, but I don’t have a lot of people in my life and no one who would understand this, so I’m going to get it all out here :heart:
I’m 40 and in 2012 when I was pregnant with my second child, hrhpv was discovered. Obviously we didn’t do anything while I was pregnant because it would have put my daughter at risk. After she was born it was discovered that it had turned to CIN3. We attempted one LEEP procedure, but I ended up bleeding so much that I had to be rushed to the ER. It turned out that my entire cervix was covered. A few weeks later I had a hysterectomy. Following that I was clear for many years other than needing an oopherectomy on my left ovary due to a non cancerous baseball sized mass in 2014. No positive paps until about three years ago when that little booger HPV came back. Colpo didn’t show much and my doc felt confident in just watching and waiting. I was supposed to come back after six months. Well, I ended up getting divorced from an abusive marriage, moving 1500 miles, and being a single parent completely on my own. Life happened and I didn’t go back until last October. I guess I hoped it went away on its own like the doc thought it would. The pap this last October was again positive for HRHPV. I was supposed to go to the gyn asap for a colpo. Guess what? I didn’t do it. I have super high anxiety and a really horrible coping strategy of “if I ignore it, it will just go away” :grimacing:. I’ve been having multiple (what I thought were) yeast type infections for the past year or so, and then about two weeks ago I had some spotting. You shouldn’t have spotting if you’ve had a hysterectomy obviously, so I sucked it up and had the colpo. The doctor said “don’t worry! I’ve only heard of this happening twice, and never after a hysterectomy”. During the colpo, he goes “hmmm” :dizzy_face: then asks the nurse for some giant torture tool in the back of the cabinet :skull_and_crossbones::skull_and_crossbones:. He then said it shouldn’t hurt as he attempted to get the biopsy, and shocker, it did in fact hurt. He ended up numbing the area, which I think was a dirty lie (kidding, kinda) because that was horrible. After, he said “I’m surprised that hurt so much, it must be some sensitive tissue!” I decided right then and there that a man shouldn’t get to say whether having a chunk of your vagina cut out should hurt or not :joy:
He told me that it was either VAIN or vaginal cancer and once we got the results back he would probably refer me to an oncology gyno. So, we are just waiting on results now. I was just hoping to see if anyone else went through something like this after having a hysterectomy and then years of clear paps. How did it turn out? What are the treatment options, and side effects of treatments? Everything I’ve read (there isn’t much) sounds horrible. Will I be able to do normal stuff like, ya know? Work to support my kids? Will sex be affected? Not that I’ve done that in a couple years, but I’d like the option , lol. Thanks for reading if you made it all the way through. This has been a tough week. Oh! How long will I have to wait for results??

Hi Jewels783

I don’t have any exerperience of VAIN or vaginal cancer but I can recall people posting about it in the past so hopfully someone will come along with some relevant experience to share.

In the meantime you might be interested to look at the Eve Appeal website which offers information and advice for all of the five gynae cancers/cell abnormalities: https://eveappeal.org.uk/contact-us/

x

Hello sorry I can’t be much help but wanted to wish you well and please let us know how you get on ,this HPV can be very stressful if you don’t clear it I been positive for years just had my 2 Lletz and is probably looking like hysterectomy is next. I keep telling myself that I am lucky to be able to have medical care and that at some point it will all be in the past, I also try and make the best of the day to day and don’t allow myself to overthink or obsessive google search like I did at the beginning of all this. Take care

Hi there. So sorry your going through this. Sounds like you’ve had a really tough time. I think there are some ladies on here that have gone tvrough the stages your at. Im slightly behind you. I had hpv and cin 3 so had lletz under ga. Then results. Micro invasive cancer. So i had radical hysterectomy including ovaries. Im due my colposcopy on Friday. Im very anxious as my first colposcopy before ops was very painful. Now im worreid its gonna be more painful due to the surgery. Was supposed to be 6 months for colposcopy but its now 8. I have everything crossed for you and please keep us posted of your results.

How long did it take to progress to cancer! So scared