34 w/ Carcinoma Insitu Due to HPV, scheduling hysterectomy

I am 34 and my gyn has told me I should have a hysterectomy after a bad pap and then my cone biopsy came back as carcinoma in situ of the glandular cells (clear margins :-) ). I have never had the desire to be a mother and I have always had bad periods, been on the pill for close to 20 years so the idea of a hysterectomy sounded kinda good. Now that it is actually going to happen I am freaking out about surgery and it's after affects. I am also struggling with the hpv side of it, I mean I know it is really common but now I wonder about sex int he future. I was really just hoping to hear from other women that may have some experience they want to share with me. thanks.

(((Ms.Anne)))

Welcome to Hystersisters! I am so happy you found us!

I think it's pretty normal to be nervous about having major surgery. It's probably a good thing--it means you will carefully consider your options and make the decision that's best for you.

You might like to make sure to check out our Pre-op Forum for specific surgery information. In general, initial recovery is 6-8 weeks. Prepare ahead of time to have some help for the first 1-2 weeks. I cooked ahead and stored food in the freezer so I wouldn't have to cook for a while.

It seems that most women don't feel any long term effects from their hysterectomy. There are some who have life-long differences (physically, emotionally, sexually), but those appear to be clearly in the minority. I was very worried about long-term effects, but I've not had any difficulty at all and feel exactly as I did before my hysterectomy.

HPV is an incredibly common infection. So common, that 80% of women will have had it in their lifetime. That essentially means that just about every woman who's ever had sex with a man will have it (unless both were virgins when they first came became intimate, or if they were only ever partners with other virgins). It's an uncomfortable topic right now because it's new, and now anyone who's diagnosed with HPV feels like they're in the spotlight.

Men only rarely have problems with HPV and there isn't a good way to test them to see if they carry it. However, once you have it, you continue to carry it, and so you can pass it along to a partner. Condoms help only to a very limited extent since not all areas that come in sexual contact can be covered with a condom. The danger would not be to any male partners you would have, but to any future female partners that they would have.

Most women do fight off HPV without ever knowing they have it. There are many different strains of the virus, and some do not even cause symptoms. Some have a increased risk for cervical cancer. Types 16 and 18 are the most commonly seen in connection with cervical cancer, but there are other strains as well that can cause it. But most women can even eventually fight off these strains. Some of us just don't seem to have the immune function we need to fight this virus off, and we end up with recurrent dysplasia and potentially a hysterectomy.

If you are considering a hysterectomy, you might like to consider getting a second opinion with a gynecologic oncologist. They are the experts when it comes to female cancers and precancers and they are extensively trained in the most current medical and surgical interventions.

Good luck! Please let us know how you are doing and if you have more questions!

hello, anne. i'm sorry to hear you have cis and now need to have a hysterectomy. i hope the surgery goes well and that it successfully removes the dysplasia - and hopefully the dysplasia will not return. it's unusual for that to occur, but not rare, so please keep up with your paps after the hysterectomy.

i agree that knowing you have an hpv strain that can potentially cause cervical cancer is not an easy thing to deal with when you think about ongoing sexual contact, particularly if it's someone you haven't been with before. there are potential implications when you have sexual contact with someone else, including whether they will give it to someone else, and even the potential of that other person developing a cancer caused by hpv (such as an oral cancer). it's true that hpv is very common and it's true that most women, and almost all men, will have nothing develop from having the virus. it's also true that many of us know we have a strain of hpv that can potentially cause cancer, and i don't think that should be taken lightly. i think we each need to do what we decide is right, and i do think it's a decision that we need to consider.

best wishes to you.