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A question for women ....

7243
Posts: 211
Joined: Feb 2011

Are you able to have comfortable, vaginal sex post treatment?  Really?  If so ... What helped you?  do u have vaginal stenosis?  Scars? How did u get beyond all this to get back sexual intimacy?  My perineum is so friable that it bleeds when I wipe to hard ... And I use gentle wet ones.   I need a frank, no **** discussion of your reality. Thanks!  That will help me ... I love my hubby...he is understanding, but I'm not sure I will ever be able to get where I was.  And I'm glad to be healthy ... But my and his and our sexuality  is important.   

Thsnks in advance .... U all inspire me!  Xo

mp327's picture
mp327
Posts: 2851
Joined: Jan 2010

I used/use the dilators on a regular basis.  However, sex is more pain than pleasure.  Sorry to sound discouraging, but for me, it's what it is.

7243
Posts: 211
Joined: Feb 2011

Thanks Martha ... Not discouraging, that's where I am too.  Xo my friend.

lp1964's picture
lp1964
Posts: 839
Joined: Jun 2013

Just wanted to give you the view and support from the other gender group. I am a 48 year old male, recently married and just had a major surgery of rectum resection. This surgery often comes with impotency that mentally could be similar to the woman not being able to receive a man.

Before the surgery I had a talk with my wife where we expressed this concern and talked about, that intimacy and sex is much more than intercourse. It's an attitude and a bunch of other acts. It's always keeping ourselves looking and behaving attractive, it's a passionate kiss, it's a smack on the butt, it's a hug, it's a tender touch, it's flirtatious talk, it's kissing and touching each other everywhere, there is gentle oral sex, it's a shared bubble bath, cooking a sexy meal and a romantic dinner, a massage etc. In today society we are obsessed with intercourse and getting off (often the men to blame) and forget about all the other very sexual things listed above.

Relax and fill your life with more fun that you enjoy and can easily do.

Laz

7243
Posts: 211
Joined: Feb 2011

Laz ... Lovely.  I agree and so appreciate your sweet and thoughtful perspective.  like most on the site, I want to thrive on all levels ... Intimacy as well.  Fully agree it's not all about "intercourse" ...

i was wondering how you were doing post surgery...how are you?  A big hug in your direction dear man.

thank you for your perspective and for taking the time as you heal!  be well!  xo

sephie's picture
sephie
Posts: 519
Joined: Apr 2009

yes, sex is more pain than pleasure.... i use dilator every week 4 or more times......estrace cream,etc.... i am 4 years post tx.....sephie

Lorikat's picture
Lorikat
Posts: 555
Joined: Jul 2011

Two years out and the same.  I am glad Laz posted as my very understanding husband and I have had the same discussion.  I've done everything told and the pain is still there.  my spouse actually told me that no REAL lover would want to leave his partner bleeding and in pain.  Yet we are closer than ever and just "take our time".

 

TraceyUSA
Posts: 132
Joined: May 2013

Frankly, I have zero desire to have or try sex after this.  The main reason is the HPV factor.  The answers to any questions I've asked preventing or treating the HPV that caused my cancer have not eased my fears.   I'm told most of the time your body cures itself of it ... obviously mine didn't.  I've read that the virus attaches to your DNA which tells me there's no way to get rid of it.  How do I know that my husband's body will always fight it if he hasn't got it by now.  I don't want to take any chances.  I'm also told that the same HPV strain that caused the anal cancer can also cause head and neck cancers so that kills the oral sex for me too.  I'm just scared of passing the virus to my husband or spreading it to another part of my body.  I'm very lucky to have an understanding husband.  I totally agree with Laz that there is more than the sexual intercourse to a good relationship.

2nd chance to live's picture
2nd chance to live
Posts: 1
Joined: Sep 2013

Hi Tracey,

I've read your comment and I feel for you. I just wanted to put your mind at ease. The DR told me, once you have HPV, You cannot catch it again. You are immune. Your husband probably already has it. His immune system is stronger than yours and that's why he hasn't devloped cancer. I hope this helps.

 

TraceyUSA
Posts: 132
Joined: May 2013

I appreciate your response.  I guess I think about things too much.  I may be totally wrong but this is what I think....

 

once you have HPV, You cannot catch it again --- I cannot get it again because I cannot get rid of it; it has attached to my DNA & there is no cure for it.

Your husband probably already has it. His immune system is stronger than yours and that's why he hasn't devloped cancer - What if his body has a "break" like mine did and he doesn't fight it any longer.  Am I reintroducing it to him everytime we have "skin-to-skin contact" which they say is how it is transmitted?

 

There just seems like too much uncertainity.  I continue to worry that this virus is still in my body.  I'm thinking about making an appointment with an infectious disease doctor to see if they can provide any insight. 

lp1964's picture
lp1964
Posts: 839
Joined: Jun 2013

...tell you this, but your worrying is unrealistic. No matter how much we scrub it, how much detergent, chemicals, pesticides, fungicides, herbicides we use the fact is that our world is full of bacteria, viruses, fungi, paracites etc. We inhale them, swallow them by the billions every seconds. They are on our skin, in our eyes, ears nose, vagina, anus, everywhere. Over the hundreds of millions of years we developed a symbiosis we them that works most of the time. But sometimes on rare occasions it doesn't and they make us sick. You catch a cold, influenza, hetatitis etc. and sometimes virus related cancer. 

This is the fact of life. There are a few things you can do: hygiene, vaccine, protection, but you can't stop living and live in paranoia. 

I hope this makes sense and helps.

Laz

mp327's picture
mp327
Posts: 2851
Joined: Jan 2010

Very well stated and I must agree with you.  The bottom line is every human being eventually succumbs to something.  Granted, we do have control over some things, but in today's world, probably not too many. 

I once asked my medical oncologist before I had had any alcohol to drink after my treatment ended if it was okay to have a margarita now and then.  I think his answer applies to many things.  He told me "I did not put you through all that treatment just to have you live in a prison.  Live your life and remember everything in moderation."  I think his advice was right on.

One thing I am trying desperately not to die from is worry!

I hope you are doing well, Laz! 

Gulamin
Posts: 132
Joined: Dec 2010

Yes, I can relate. I have a loving husband too and am almost 3 years NED (checkup next month... keep fingers crossed). For us, it works. I am not in pain but have vaginal dryness. when I use a lubricant it works well. I am just not as into it as I used to.. somehow lost its magic... I am working on it. BUT, no pain for me.

cap630
Posts: 148
Joined: Jul 2011

Just started reading Women Cancer Sex by Anne Katz, RN, PhD hoping to find more insight.  Physical therapy with dialators really helped me too.  It is the lack of interest that is hardest.  We keep finding new ways to stay close.

7243
Posts: 211
Joined: Feb 2011

Thank you for your willingness to share ... I'm really where you are.  Trying to optimize my life at the 3 year point ... I respect you all so much.  I feel so fortunate to have this community of friends to discuss such sensative and private issues.  

Gulamin ... Prayers to you as u approach your next check up!  xo

Clovergirl
Posts: 46
Joined: Dec 2012

anytime soon that's for sure.  I'm closed up like Fort Knox.  I was actually at the Dr. this morning for a follow up regarding this very subject.  I try the dialators but they are painful.  I work with them when I can. I find it hard to make time to do it as much as I should be.  I know I need to make time for it to be successful.  Today my doctor told me that I could have some type of recontructive surgery in the vagina.  However, he does not recommend this until Im 18 months to 2 years NED.  I just had a scan last week and that put me at 6 months NED. He was very positive that this could be done but I am not really looking to have surgery.  Just don't think I want to go that route.  I'm only 47 so I am willing to try some other solutions first. Im just afraid surgery like that would have it's own set of problems.  Losing the sexual intimacy I had with my fiancee is tough but I'm glad to be alive and he is very understanding.  I'm not giving up but I must say things don't look promising in that area. 

qv62
Posts: 245
Joined: Nov 2012

I have stenosis from the surgeries I have had over the last few years, unfortunately the one last Jan really set me back and although using the dialators for a few montbs I have only tried intercours once this past summer, it was very painful and don't feel ready yet to try again. I have slacked on my dialoators but once healed from yesterdays biopsy I will try and get back into a routine.

Phoebesnow
Posts: 447
Joined: Apr 2011

Has anyone read fifty shades of gray? That just might get your juices flowing.

 

My husband has been paralyzed from the waist down since he was 23.  A sexual relationship is very important to him.  He was very patient with me as it took 9 months to one year to get it all working again.  He was my dilator as I found the dialator too boring. We used manual stimulation and oral sex.   At times it is painful and then we have oral sex instead. He uses injections to make himself hard.

 

Anyone who believes there husband is happy in a sexless marriage is fooling themselves.  He will have emotional affairs that may lead to sex or prostitution.   I spend a lot of time with men because I am a surfer.  All they think about or talk about is sex.  They are very open.  If the wife is not having sex they tell everyone! They even discuss there own sexual dysfunction and worry a lot about there wives happiness.  

 

i really believe that if you explore other ways to excite yourself that things will start working better for you then grin and bear it.

sephie's picture
sephie
Posts: 519
Joined: Apr 2009

thankyou so very much for your insight.... i needed to read this.... i have been worrying about this .... i need to try harder....i have never felt pain as i felt after biopsy and tx for this cancer..... i have had broken nose, broken knee cap,  broken other bones,  knocked tooth out , hemmorrhoidectemy, etc and just thought i had felt pain but nothing to compare to the pain i experienced with this mess  so i am so very fearful of tearing tissue and having to heal up which is what has happened before...... oh well,,,,,,sephie

lp1964's picture
lp1964
Posts: 839
Joined: Jun 2013

...each other should never do want thing together that hurts. I think we concentrate too much on intercourse in our society. Guy are different anatomically and mentally. We need a minute to be ready. Women need to be relaxed and wet to open up. Unfortunately the treatment we receive compromised both of these. I had a huge surgery and impotence was in the picture. Thanks god things look ok now, but erection and orgasm hurts me still so I'm patient. Men have to be patient with you even more and play manually and orally a lot of touching. They may need to be happy receiving the same for a while and give up intercourse. This is a great opportunity to pay a little more attention to the whole person not just the genitals.

Laz

Phoebesnow
Posts: 447
Joined: Apr 2011

Fear was my biggest obstacle, fear of hurting or hurting more.  As you all know I am in excruciating pain with every BM .  I bleed every day soft or hard, just the way it is.  I actually had a one week break from this one week ago in Florida. This gives me hope that eventually this will rectify itself also. My rules are no pushing on my hips, very painful, and the anal area can't get wet because of the stinging pain.

 

I think if you can find away to stimulate your self and get your natural juices flowing that you will be able to do this.  Maybe for short period in the beginning,let your husband know that these are test drives.  Gentle andquick to begin. If you find yourself enjoy you can let him know and it can last a little longer.  You are the driver.  It is important for him to know you are trying and you care. If oral and even manual sex are all you can manage I am sure this will suffice.  

 

Woman marry for love, kids  and often security and sex, men marry for love and guaranteed sex for life.

Marynb
Posts: 1134
Joined: Aug 2012

I love your candor! How fun that you are a surfer. I used to surf when I was younger and my ex. husband is a surfer. I know the kind of sex talk you are referring to. I used to work in an all male firm and it was a constant topic of conversation.

I agree with you, it just isn't a good thing to decide to be in a sexless marriage out of fear. We have to fully live the life we have been given.

I am divorced, but I have wondered about whether I still have the hpv virus that could be transmitted. I am certain that I was exposed to it by my cheating husband. There is no other way I could have been exposed. I just wouldn't want to give it to anyone. I wish I knew more about this. I can't find answers.

RoseC's picture
RoseC
Posts: 502
Joined: Jun 2011

Sorry Phoebe but I really have to disagree with you on this one. It is NOT a universal fact that all men will resort to finding sex elsewhere if they can’t have it with their wife. And getting married does NOT mean unending sex, as many couples will attest to. The age-old idea that men only are interested in sex is not true. Not universally anyway. There are many ways to be close to one another that don’t include intercourse. Women, don’t sell your man short. If he loves you he’ll be there whether or not sex is in the picture. I am living this so I know what I’m talking about. Am I sure he’s not out there looking for sex elsewhere? YES...A CONFIDENT, RESOUNDING YES.

 

Edit: You know, the more I think about what you're saying the angrier I get. Sorry, I know every one of us has different opinions and different life experiences, and I really don't mean to come down on you - but I guess I'm going to. The women who have gone through anal cancer treatment are hurting 'down there' and don't need to hear that their man is going to go elsewhere for sex if they don't provide it. Specially when it's not true. Each and every one of us is different - different needs, different wants. If a husband is really needing sex over caring about whether or not his wife is going to be hurt from having it, it might be time to find another husband.

Marynb
Posts: 1134
Joined: Aug 2012

I do understand your feelings, and of course generalities don't apply to every person in the group. I do agree that, generally, healthy men desire sex. Why wouldn't they? Sex is a healthy part of life and it is a biological need, just like eating. There are some people that don't have a sex drive, but not many.

This is rather personal, but I am wondering why an anal cancer survivor can't have sex? Is there a physical reason? I mean, I can understand why intercourse is not possible during treatment and recovery, but there are other ways of having sex during those times. After recovery, is there any reason? I am really wondering. Is there a biological reason?

RoseC's picture
RoseC
Posts: 502
Joined: Jun 2011

Hi Mary,

 

Sex is a normal part of life and a very healthy part of life but I don’t agree that it’s a biological need. That is unless a person is of child-bearing age (creation of life and all that). Sex is a NICE part of life, for sure, but unless I’m wrong (which I could be) it’s not a biological need after child-bearing age is done with. It’s not the same as eating – we need to eat in order to live but we don’t need to have sex in order to live.

 

I disagree that ‘there are some people that don’t have a sex drive, but not many’. How do you know that? You’re assigning a status to folks in general without providing a basis for it.

 

Why can’t anal cancer survivors have sex? A couple of reasons come to mind right away. Psychological resistance to perceived pain and the physical actuality of tearing tissues etc. Radiation can cause the tissue in the vaginal area to become very thin and thus tearing can happen, which can lead to infection. This could be partly psychological too – the fear of damage dampens the desire for sex. (By sex, I’m referring to intercourse.)

 

Also the plunging into menopause, if a person wasn’t there already. I know when I went into menopause, the sexual desire left too (note: not the physical desire for my husband - ie, I still think he's a hunk - but the physical desire for sex). All combined it would seem reasonable for a person who underwent this kind of treatment to not be all so excited to start up sexual relations again. Not saying we shouldn’t try, but I understand completely the reasons for not wanting to.

 

 

Edit: My own little take on life in general – there are so many things a person can be happy with. Enjoy every little thing. Don’t get hung up on any one thing. Enjoy every little thing you have whether it be the trees turning color or your grandchildren or the scent of a pretty flower. Maybe I’m terribly misguided but I don’t feel sex is the end-all to everything. Important? Yes, but all-inconclusively important? No way.

sephie's picture
sephie
Posts: 519
Joined: Apr 2009

wow this is a great discussion!!!! i can definitely tell you why certain anal cancer survivors can NOT have sex ( intercourse)....When i have intercourse it really hurts---- a lot!!!!hurts during the movement and then afterwards.... it has torn the tissue all around the entrance to the vagina and where the labia attaches even tho i had lubrication and we moved slowly....it pulls on the anal area where i have chronic inflammation and pain almost every day......when i tear some tissue ,, i have to heal for 3 weeks... the absolute memory of the horrible pain that i had gone thru made me not try intercourse for months and months but i used my dilators......i am so glad that there are others who do not have the pain that  i have but we are all different..... i am 4 years  post tx....  i will say again that i have used my dialtors a lot to try to stretch the opening to make things easy.... it goes right bach to small the next day.....also, even tho i keep trying ,, it is not fun and is not enjoyable ..... thx ..... sephie

Marynb
Posts: 1134
Joined: Aug 2012

I am so sorry to hear about your pain. That is really heartbreaking. I hope that this pain goes away someday. Do the doctors offer any hope that it will?

sephie's picture
sephie
Posts: 519
Joined: Apr 2009

my docs at MDA say probably permanent radiation damage...the tissue was fried and healed the best it could.... so probably will be this way forever.... maybe not......sephie

Krissy59
Posts: 26
Joined: Oct 2013

I have some pain, but not too bad. My biggest issue it that I have no interest whatsoever. My doctor (gyno) told me this would improve with time...I sure hope so.

Phoebesnow
Posts: 447
Joined: Apr 2011

I am sorry that I offended you Rose.  

 

I certainly do not think intercourse is the only way to have sex.  

 

 

I am always honest.  In my book honesty is always the best policy.    

 

If I have my head stuck in the sand I would want someone to pull me out.

 

Of course there are exceptions and each situation has to be looked at separately.  

 

 

I am sorry to all who are offended by my post.  

lp1964's picture
lp1964
Posts: 839
Joined: Jun 2013

It may not be obvious, but no matter how old you are sexual things surround us everywhere. Sex is the strongest biological force in the world from a single cell bacterium to human. It's stronger than your own survival. If your child needed a heart and you were the only candidate for a transplant, would you have hasitated a second to do it? No. 

No matter how old we are we notice an attractive, sexy person whether in the street or a the Oscars. But we still haven't left our animal nature mentally, where sex meant nothing but a quick intercourse for nothing else but procreation. 

Humans have to realize that our complex suffisticated mind made lot more out of sex than intercourse, just like we made dining at a beautiful table out of eating only for nutritional purposes.

Laz 

Lorikat's picture
Lorikat
Posts: 555
Joined: Jul 2011

Wow..  I know I'm going to get booed for this but here goes....   A lot of sex vs no sex needs to include ages of participants. (IMO)

And by sex I mean intercourse...  If you and your partner are still young-ish and had a very active sex life BEFORE cancer, then you are more likely to want it back afterwards!  If you have been married since the beginning of time, both are already on the slow down side of sex, and maybe a blue pill is needed, it becomes a different story.

for me intercourse HURTS,  I tear, I bleed, and forget inthusiasm.  Nitty gritty, I still have mucus surprises, and am never comfortable with seriou foreplay for fear it will show up.  We STILL cuddle and please each other...  I know my husband will not go looking for someone else.  If he felt the need he would tell me.  That said, we are in the second catergory of married since beginning of time and on the older side.  But who knows?  Things could still change.  I am beginning to feel the 'want to' on occasion....  Hummmmmm

Marynb
Posts: 1134
Joined: Aug 2012

Hmmmm. If this works for you and your spouse, then who would blast you?

I just want to say one thing. The age group with the highest divorce rate is over 50, married 20 yrs. or more. Very often, the husband has had affair and relate that the sex in their marriage had been over for years. Ironically, many times wives are shocked, as they were perfectly content in their sexless marriage. Just sayin.....

If medical reasons make intercourse impossible or very painful, that is a different story. I would guess some creativity would be called for to keep a marriage alive.

pamela_preib's picture
pamela_preib
Posts: 51
Joined: Nov 2012

I am happy to say I will be out of treatment one year January 31 2014 and my husband and I have returned to a somewhat normal sex life. It was very painful up until a couple of months ago. I had no desire at all. I was one who was thrown in to instant menopause. I was struggling with everything. Vaginal dryness was a huge issue. No interest at all and mood swings and joint aches like nobody's business. My primary care doctor placed me on hormone therapy and I am a new woman. Within a week I could walk and bend my fingers without pain. I could feel moisture returning to my body. I had been so depressed as I felt like cancer treatment had robbed me of twenty years. I haven't had my 50th birthday yet so I was pretty depressed. I am so thankful for my primary care doctor's support and follow up. My cancer team did nothing to help me. My sex drive has never been real high mind you. I feel like I am back to my normal which is a huge improvement. Other than my testy digestive tract I am doing very very well overall.

Marynb
Posts: 1134
Joined: Aug 2012

It is great to hear that you are doing so well! That is good news! I never explored hormone replacement therapy. Sounds like it has really helped you. What do you take? Is it safe for long term use?

Phoebesnow
Posts: 447
Joined: Apr 2011

I am also using hormones Combi Patch 50/140.  I had a very early menopause at 39 my period completely stopped.  I had hot flashes every 15 minutes untiI I startedHRT after seven years of symptoms.  I had tx at 49 almost 50.  I have no problem with vaginal dryness. I will be 53 in January.

sephie's picture
sephie
Posts: 519
Joined: Apr 2009

being over 60 yrs.old like i am has a lot to do with trouble with intercourse ....    sephie

Marynb
Posts: 1134
Joined: Aug 2012

How do you think age relates to it, over and above the results of treatment? I am over 60 also. Just wondering.

sephie's picture
sephie
Posts: 519
Joined: Apr 2009

as we age, the tissues become dryer and dryer especially .... there are some women who cant take hormones....so estrace cream helps but not a lot....healing is slower also ..... sephie

Lorikat's picture
Lorikat
Posts: 555
Joined: Jul 2011

Whoa Mary...  You ask some tough questions!  I am not answering for anyone else just what I feel.  i am leary of taking hormones even though I lack interest in sex.  I personally feel that in many people sex interest DOES decline with age cancer or no cancer!   I love my husband and he is the kind of guy who improves with age.  I love to cuddle up with him and he with me.   now, he's 11 years older than me chronologically only.  His blood pressure is high and he takes meds. His interest isn't as great as it once was.  I'm sure there are people in their 70's who are still very active.  I dont think it's particularly the norm however.

I think each and every one of us have to find our own 'norm'.  Some marriages will survive.  Some won't.  I have all the faith in the world that mine will. I guess what i'm saying is we are all going to handle getting older and all it brings, including cancer, the very best  way we can, husbands and all!  Hugs to all

 

Phoebesnow
Posts: 447
Joined: Apr 2011

Hormones will not give you sexual desire.  Just like a marriage it is something you may need to work on.  For me it is making time  for it.  Once I get going it is the same as always. Good!

 

 I started taking the hormones after several years of debilitating symtoms.  My doctors insist at such a low dose it is harmless.  My radiation doctor let me continue the hormones thru therapy, even though he would not let me take anything else.  

 

I just think its important for all of us to tell our experiences for the new people.  I never expected to have sex again based on what I read here and on other sites.  I am glad that I used the dialators and resumed my. Sex life, which is very important in my marriage to both of us.

 

Sorry for the typos, but this system is very difficult to use on the I pad.

Lorikat's picture
Lorikat
Posts: 555
Joined: Jul 2011

Ditto the IPad!

 

sephie's picture
sephie
Posts: 519
Joined: Apr 2009

normal life, normal sex life is what all the docs at MDA and all of us want for us survivors.....but it does not happen for some of us..... a partial normal sex life is good but some can barely get to that stage..... we LOVE to hear about the ones who can have sex with enjoyment again.....congrats  to those.....sephie

Marynb
Posts: 1134
Joined: Aug 2012

Thanks for the posts!

Porter
Posts: 5
Joined: Oct 2012

Dear 7243,

Lots of lube and dilating 2-3 times per week & sex is comfortable & orgasmic.  (Libido is a different thing entirely.) There is a great website a-woman's-touch.com. They have a vaginal renewal system for women that have had cancer and pelvic radiation. They talk about using a moisturizer on the perineum so it's more comfortable.  It shouldn't be painful.  Check out that website, there's great info on it.

at the Sloane Kettering talk on managing late effects on AC they did a whole section on post treatment sexuality for women.  Try to get the power point from the HPV foundation.  Hang in there.  Hugs

lowens's picture
lowens
Posts: 33
Joined: May 2012

Porter,

I am so thankful you posted the site. I just ordered the renewal kit and will be brave enough to attempt to put it to good use. This single/divorced mother (10 years now) has been willing to accept a life without sex but my gynocologist tells me I am too young to just hang it up at 53. I have taken the first step by ordering the kid. Will keep you posted. 

Thank you all for your honesty in your posts.

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