My husband is 2+ years out of treatments for "base of tongue" HPV+ cancer. John and I have been together for 18 years and married for 11. John was 45 when we got married. He was never maried before but certainly didn't live a celibate life and I was married before with a few sexual partners in my life. John and I have always had a very good sex life. Ever since John was diagnosed and completed treatments our sex life has been affected. We still have a great sex life but there are two things missing - passionate kisses and oral sex. John no longer kisses me passionately and will no longer have oral sex with me although he doesn't have a problem with me performing it on him.

I am now 47 and when I was 30 I had an abnormal pap smear with cervical dsyplasia. I have not had any abnormal pap smears in the past 16 years and I do go annually for them. I think John thinks that I gave him the HPV virus and therefore is afraid to kiss me or have oral sex with me. He of course denies this but that is how I feel he thinks about it. So......where do I go from here? When I talk to him about it he tells me eventually that part of our relationship will return. Well - I'm not getting any younger waiting.

I try not to take it personally and I know he is concerned about a recurrance but once you carry the virus don't you always carry it? I know the body clears the virus and I have talked to my GYN about it. She said that when she has patients that have an abnormal pap smear and come back for a re-check, most of the time the subsequent test is normal because the body has cleared it. I give him all the stats about how many adults carry the HPV virus etc. but that doesn't seem to help.

I'm sure we are not the only couple having post-treatment sex issues. Any suggestions or info that I could give him to read that might put his mind at ease? Funny how I'm not afraid of "catching" it from him.

Wanda

John's concern about getting HPV now strikes me as locking the barn door after the horse have bolted. But you have to deal with the husband you got, so next time you get a Pap smear, request that the doctor also order an HPV test on the smear cells. According to the Digene HPV test info site: [quote]The digene HPV Test can be done by any laboratory, usually using the same sample of cervical cells collected for the Pap. It does not require any additional time or discomfort on your part.[/quote] HPV test info My understanding is that there is no similar test for men, our HPV is diagnosed from the tumor.
When the tests results come back negative for HPV for you, then get a copy and give it to John.

If John still refuses to be reasonable, then you have two other potential avenues:
Buy a good vibrator - the best one for women is undoubtedly the Hitachi Magic Wand (my opinion is based on over twenty years of field research and backed up by every major porno video on the internet as well as sex forums) You can even help out OCF by buying it on Amazon thru the OCF link. Explain to John that his cancer fears has forced you to a mechanical substitute - sort of like using the PEG when your throat muscles don't work. Incorporate it into your lovemaking.
Or follow the adage: What is good for the goose is good for the gander and let John do without oral sex until he reciprocates.
My advice is to do all three. BTW, my wife had abnormal pap smears all the time and her HPV tests came back negative. I believe I got my HPV from one or more of the lovers I had before I met my wife. Odds are the same is true for John, but once an irrational fear takes hold, I think you will need the cold hard test paper fact that you do not have HPV to bring him back to reality. Since John apparently believes his HPV has magically disappeared, then he should have no basis to disbelieve your test results.
Keep the Faith
Charm

As I've said, the quickest ways to resolve the issue if a heartfelt intelligent conversation hasnt worked is to either withhold sex of any kind or play on his ego and let him know he isn't satisfying your sexual needs. Buying the vibrator will reinforce the message.

Most guys if you told them they couldn't get down without going down wouldnt have to think very long before going downtown.

Eric

Hi Wanda, I'm not sure if it is standard of care where you live, but the HPV test for women over 30 is standard here. I wasn't even aware that I had been screened for it until I called my doc in a panic after the DX.

Our resident (OCF/Playboy) Forum advisors are spot on, so to speak. Great advice.

I suggest that you hold out for a while--whatever seems like a long time (a couple days, maybe Oops, weeks...not days...is "weeks" a long time?!). Send him some naughty text messages and/or e-mails about scenarios and fantasies you'd like to explore (role playing, public sex, oh...my mind is wandering...etc.). Create vivid images and touch on all senses in your descriptions. Make sure they do not involve him going down--it might turn him off. Dress seductively to make him stand up and take notice. Get out your seduction tool-kit and go to work, girl! Be a little out of reach--pull back. But don't put out. At. All. until he can kiss you passionately on the mouth and other places as well...and enjoy it.

You can also disappear into your bedroom for some private time with your electronic friend. Make sure you buy one that humms loudly enough that he can hear (unless you have kids around--that would scar them for life.)

In my experience, when someone says that something will "eventually" happen...it happens at glacier pace if at all. That's bullshit...sorry, but it is. He has no intention of "going there." So, if desperate times call for desperate measures...my suggestions might fit the bill.

...and if the electronic humm isn't loud enough go diesel powered

Thanks guys I appreciate the suggestions. I figured I wouldn't get a lot of responses on this subject since a lot of people generally aren't comfortable talking about sex. For me it's one of my favorite subjects. Like I said - I do have a great sex life with John but it's not like it was BC (before cancer) and I do miss the passionate kisses and oral sex. My doctor has always screened me for HPV since my pap smear in 1993 came back with cervical dysplasia. I have LOTS of "toys" and batteries and know how to pleasure myself - that's not the problem. Kissing my husband passionately brings a deeper connection. I sometimes feel selfish complaining about what is missing when we have so much and I know there are others who don't even have a sex life let alone a satisfying one.

I was hesitant to post this to begin with because I know that others are dealing with so much more that it makes me feel selfish.

I appreciate all the suggestions and I guess I will have to try holding out for a little while and have "dates" with myself.

@Wanda: Okay, let's see...you were called into active duty as a caregiver in 2009, you saw him through rads and chemo and all that those treatments entail...including the option/non-option of a PEG. Selfish to want attainable parts of your life restored? Nope.

I'm with you--it's one of my favorites, too. Actually, since I'm looking at being single again, I consider no oral sex a deal breaker. Despite all the problems we've had with other things...sex was one area that kept going strong, at least until recently. But, it is scary about all the diseases out there. And, I don't just believe in safe sex...but the more extreme "you can't be too safe sex". Let's just say, I'm pretty self-sufficient these days.

My sons tell me I need to find some real live friends...not just electronic friends. Oh! they are referring to the amount of time I spend on here and facebook connecting with people who I don't get to meet or see face to face...and not the battery operated kind. I think they're right. I need to get out more.

Good luck! I hope he can get back into it. It isn't so bad never having had something--but having something you enjoy and then having it withheld...that's bad.

@ Eric: Diesel--Peterbilt? Volvo? I thought I had the top-of-the-line when I bought my Craftsman Bushwacker 5000. Makita has been making some strides in cutting into Sear's marketshare for hand-held personal massage devices. But, I think a diesel model would blow away the competition. That is, if they can do something about the exhaust...and the pull cord starter.

mines purple, glittery and flashes in the dark!!

But seriously and this might be quite wrong but I remember when Alex was first diagnosed, I rang a friend overseas who had suffered OC 7 years before. One of the things he said whilst he was warning me of all the potential disasters about to befall us, was that Alex and I would never again enjoy deep and passionate kisses. At the time I was much more concerned with keeping Alex alive so didn't take any notice at the time. I vaguely recall he connected it to the loss of saliva...

Now I read this post, and wonder if there is something that is bothering your husband around lack of saliva or even taste?

Of course it is also likely that your husband is fearful of "catching" HPV again - even though this is illogical.

I have a mortal terror of being a passenger in a reversing car due to an accident I had when I was a kid. I know that this is illogical but that knowledge doesn't help me much when the palpitations start. Maybe your husband is going through the same thing? He knows it is illogical but needs time to deal with or get over the fear?

Cummins is the only choice for diesel powered and the pullcord is part of the image. After ripping that cord and hearing the roar of the engine, feeling the torque in your hand, you know you're going to get the job done.

As far as passionate kisses go there's actually a link between saliva and that passion. When a man gets excited testosterone in the body increases and can be transferred in saliva through kissing causing a chemical reaction in the recipient, helping turn them on...as that's one of the benefits of testosterone. Which would lead me to the question, has John had his T levels checked? Men in their 40's begin to lose 1% testosterone production per year naturally anyway, however lowered T can be a side effect from treatment as opiates and antidepressants will effect production and radiation damage to either the hypothalmus and or pituitary will also as both are important in T production.

I would say the biggest tragedy about my particular situation is losing the ability to kiss properly. Half of my face does not work so the lips and tongue are greatly affected and of course the saliva issue which is increased due to my mouth never being able to close fully. If I had the ability to kiss as I did before, I would do so at every opportunity.

Chris & I have been together a little over 5 years (3 years @ diagnosis). There is no one I would rather be with, look at or talk to! We don't live together and certainly had our ups and downs before the diagnosis. I should say that I knew before my diagnosis that he didn't handle illness well (watching him lose his dad, aunt and cousin in a relatively short period of time) so there were a lot of "unknowns" for me going into this.

We have this incredible and undescrible passion between us and when they told me about the treatment and that they were going to pull my teeth, I thought well this is it. I didn't see him for 2 weeks after the surgery and by the time he did see me I had lost 25 pounds. Which freaked him out! Fast forward to starting chemo, lost my hair right away and by that time I had lost about 40 pounds. Knowing him, I would try to figure out just what he saw and thought while I was going through this. I don't know how well I can get my thoughts and feelings out on this (crying as I'm typing this and remembering) but I just wanted at least ONE thing to be normal for me while I was going through this and that turned out to be my Chris! As much as we could, we continued to keep things as normal as we could...which involved a lot of kissing, maybe not the long, soulful kisses but kissing...keeping our connection! Surprised even my doctors that I would even want to be kissed or touched while going through this.

I'll never forget the day when Dr. R wanted to talk to me about "intimacy" issues and I said "no worries, Doc, we're all good" and the look on his face when he said "really"??

I have the severe dry mouth issues like most of you and on top of that had to learn how to kiss with dentures! So many times, I was afraid he would never want to kiss me again! There were times as I looked in the mirror (70 pounds later) and would wonder and try to figure out what did he see and why was he still here with me???

I know the answer now....it's LOVE!! I don't have too many other answers and I don't know how long we will be together but it is so, so good and is something I will always treasure.

Cathi

I have to jump in here...our sex life has definitely changed since OC. While we still enjoy a variety of intimate connections, deep kissing is not one of them. My husband has no feeling on one side of his mouth, his tongue movement is restricted, and he also has increased saliva flow that makes him self-conscious about drooling. We still kiss but they are little kisses on the lips on his good side.

I do miss deep passionate kissing. I have resigned myself that this is a part of our past and I'm okay with that. OC has put a real damper on a lot of things in our lives not just sex. We work hard to make up for some of those losses in other ways. But that's another topic. To spice up our sex, I love to dress up and we role play. We've been doing that forever. Boy, is that fun! It gets things going in the right direction. I also think that when I initiate those bedroom antics, Clark is reminded that he still turns me on. That is so good for his ego. And I indulge myself with toys as well.

I empathize with you, Wanda. I feel sad when I realize how much OC has impacted and changed our lives. I hope that you and John can work this out. Keep the communication open and continue to tell him what you want from him. It may be that he has to hear it many times before he can act on it.

All my best-
Anita

Eric - I've always been of the opinion that re kissing (or any other activity), it's not how much you have, but what you DO with it that counts.

Cathi - Yes! it is LOVE! Your own beautiful love story puts to rest that old saying "Sex isn't everything, but it's way ahead of whatever is in second place". First is LOVE. May you and Chris continue to always treasure each and every moment.

@ Eric: LOL! and great information! You don't accept anything less than performance above and beyond great from yourself in all other areas...I'm sure it's the same with sexual pleasure. I'm sure you know the brain is the largest and most powerful sex organ in the human body...

@ Karen: I hadn't thought of the saliva issue...and purple with sparkles that lights up in the dark? Lol!..sounds like a bike I had when I was a pre-teen.

@ Cathi: Ahhhh...love! You are blessed! Chris isn't a poufer. That's for sure.

@ Anita and Wanda: This is the power of caregivers sharing--addressing an issue that seems to get swept under the rug (sorry, no pun intended). I didn't have to confront it because of the treatment being stopped. But, I know it would have been important to me. Thank you, both!

@ Anne-Marie: Exactly right...you have a great ability to distill an idea to it's most important point.

When we found out about HPV+, we looked everywhere for information...didn't find anything. I'm glad Wanda had the courage to take on this subject!!!

I'm not sure but I think I just got the "size doesn't matter" speech...

Ouch. That would be the one.

Eric - "if the shoe fits". . . .but I'm sure it doesn't in your case. (Hope I'm not being too risqu� here.)

LOL, I love it! I'll borrow a phrase my grandpa used once in his shop when he was joking with the guys, "I won't make any livestock jealous but I was comfortable in the locker room"

Now that may have been too risque however I think its important to be able to talk openly about this subject. There should always be respectful boundaries of course (which at times I may test) but sex is an important part of normalcy we all seek after treatment.

In men, tx can do a lot to disrupt physiological functions necessary to perform sexually and that will have huge impacts on every aspect of life, particularly relationships. Opiates and antidepressants cause sexual dysfunction, rads can damage both the pituitary and hypothalmus which help control testosterone production. Post tramatic stress can cause both depression and sexual dysfunction. The deck can be stacked against us in getting that part of life back to good and if open communication and candid yet respectful discussion about it isn't taking place how can solutions be found? Humour just helps that discussion get going by lightening the mood, breaking the ice.

The great thing about this forum is that its anonymous so people can share without feeling judged. Personally I've never cared what people think of me as an adult, so I'm very candid and open about it.

My thoughts for what they are worth. I hope solutions are found for you Wanda, thank you for starting this important discussion.

Comfortably yours

Eric

i use to say "you can't do precision work with a sludge hammer."

My now husband and I have never truly had the passionate kisses you speak of. Except for one night when he got drunk at his cousins wedding, and kissed me, passionately. It was in front of his whole family. It was the first time I met most of them, but not since.
Now....I can't get my lips to work right. Even if I could, I would feel so odd about anything like that due to the half a tongue, lol.
I don't know if your husband feels the way I do about it. I know this has definitely made me insecure about kissing or anything else I used to enjoy doing to make my husband happy. I am kind of glad the lips don't work right, but sad that I can't kiss my husband and make him happy in those ways anymore.
I have found other ways to try to still get the same end result. Just doing different things, and it's not the same, but it's the thought that counts.
I can't say I know exactly what is going on with your husband. If he's insecure about it, or is worried that it won't work right anymore, then I am not sure what will fix it. It may be possible that he worries about what you were saying. If he says that's not the reason, then maybe try your best to get that out of your head, because he is your husband, and why would he lie to you about that?
Hope you guys get things figured out and can compromise somehow, or find something that he is willing to do that will make you happy.
Instead of passionate kisses, we have passionate Cheeky's, lol. hahaha. Maybe get a little creative with your hands and some lube. So if you are both willing to compromise instead of "punishing" maybe both will be happy,
I am not saying you can't be upset/hurt by this. I know my husband was upset when I wouldn't kiss him anymore, at least at first. Now that he has seen time and time again when I would try to kiss him, and my lips just wouldn't cooperate. Then he saw how sad I would get because of it, he is willing to settle for cheek cuddle.

In the end, I hope you and your husband can find something that makes you both happy. Get things figured out so you don't feel so deprived of those good things you had before.

From some one who have gone through treatment - I have trouble with both of what you mentioned. Its the lack of saliva and control of tongue/mouth that makes it impossible. I'm only 1 yr out and have difficulty with both. So I doubt very much that it has anything to do with your hubby worrying about catching HPV. If i could kiss my husband properly like I used to i would definitely do it but we have to settle for kisses on cheeks and lips (no tongue involvement!!) Yes its very sad to for me too, I wish I could give him a passionate kiss like before but it just would not work. And well oral sex - if he cant kiss properly he probably feel like he cant do a good job at it either. If you cant control your tongue then it makes it a bit difficult?? With me, limited mouth opening makes this a bit of a problem!!! Too much info from me??

Sorry to be jumping in to this discussion late. Like you, I love the subject, and like you my partner and I are having our share of problems with sex that are tied to and not tied to my cancer and treatment... but that's another story all together. As for the question of your husband and oral sex... in the lesbian community something called "dental dams" became popular during the beginning of the AIDS pandemic as there was some evidence of the possibility of transmission via vaginal secretions. I have never actually used one but perhaps this might make your husband more open to engaging in oral sex. I am six months post treatment and, for me, the thought of giving oral sex just plain hurts. My mouth is still considerably compromised from treatment. I can imagine, though, that when it heals more I will want to resume giving oral sex, but I can also imagine some stress the first time. It doesn't really matter from whom one got the virus - at least that is how I feel - but the act could be a painful reminder of the misery the virus did cause. But that is just me. Here is a link I found doing a quick search for dental dams; http://www.pamf.org/teen/sex/std/oral/dentaldam.html. Maybe this will help. -Michelle

Thanks Michelle. I appreciate your input. Unfortunately things in the oral sex dept. remain the same. It might be childish on my part but I'm not going down until he does. Unfortunately if you read the post I put up yesterday he is having some gum/jaw issues at the moment so I am not approaching the subject for now. In the grand scheme of things it probably isn't a big deal and does make me feel guilty whining about it when he has been through so much and continues to deal with issues post treatment.

like other folders, i offered to print out this one for my parents as they aren't that web savvy ...my Dad said, "can you give your Mother a copy soon" ;o)

(note to self, gotta find me a bike like sandy's)

Talk to me about guilty and whiny... I feel that is my song and dance. In my case, the roles are reversed with me (the cancer patient/survivor) feeling guilty and whiny about pushing the sex issue (like, um, can we have some please) and my partner the hesitant one. And then me thinking: what's my problem, she did so much for me when I was sick, give her a break... and then the flip side, damn't all, I went through hell, let's have fun. But it's never as easy as that, right? Still, the dialogues in my head runs a little like that. It's hard to know what normal is going to look like for us. It sure doesn't feel like normal right now. Cancer does have a way of straining a relationship. Oh, and I forgot to mention in my last post that we asked the doctors - way back in the winter when this nightmare began - about sex and if we could "proceed as usual" and they said, yes, fine. There was no restraints on what we could or could not do. All situations are different, but you might find that useful. Be well. -Michelle

Finding out where the new normal falls regarding sex hinges on so many things after treatment for OC. Just getting through treatment is a big accomplishment. Best wishes to everyone in finding some common ground with your partners.

@ Caco: Absolutely LOVE your dad's personality!!! He sooooo reminds me of my own dad! lol...I still have my purple sparkly bike...a Schwinn Stingray with a sissy bar...ooooh, AND it still has it's original banana seat. Thanks for the video post, btw. My bike was pretty good...but the ladies in the video had much more fun...and got a male strip-tease to boot! Next time I'm on, I'll share it on my FB wall for those of you who are curious...

I am very happy to announce that the oral sex dry spell has been lifted. Patience does pay off.

wow, good for you...it's been over 2 1/2 yrs for me for anything...I just try not to think about it. He has issues from when he had Non Hodgkins Lymphoma and it kinda messed up his sex drive because the tumor was between his bladder and uretha and he had filled up with fluids down yonder and it kinda contorted "it" we just joke around bout sex, maybe one of these days. If not, I've found that sleep is good.

also how did I ever miss this posting in the first place???

Good news, Wanda!

Woo-Hoo! Good for you, Wanda!! Another thing to be thankful for this Thanksgiving!!

Wanda, that's great news. I too just noticed this thread from several months back.

Must say that as a single man I'm both envious and disheartened by many of these posts. I've never been able to understand men who aren't into oral sex (giving, that is... we all seem not to mind receiving it too much). Oh well. Different strokes... so to speak.

Yay Wanda!!!

I know some men might be a little shy about revealing that they are HPV+. But, for the single men who are HPV+ OC survivors, it could be a selling point. Really. As long as they haven't sworn off oral sex, an HPV+ test result is, eh hem....telling.

Long live that Southern gentleman, Colonel Angus!!!

ps. @D2: Your post just reminded me...weren't we supposed to meet for coffee?