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pain with sex

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

sorry to be so personal but i need to ask this: i am too afraid to even try intercourse even tho i am 19 months post tx i still have pain on left anal side when walking or sitting. i do my dilators but i have full control of how they enter and how they pull on the tissue. not as afraid of pain in vagina as i am of pulling on tissue around anus . since radiation, the tissue is so fragile that i am afraid of tearing it with the thrusting. i do have a hubby who is patient, so far, but of course, it makes me worry a little about our marriage. we have only been married 8 years. i got diagnosed with this torturous cancer after only 6 years of marriage. does any one else have this fear??? does anyone else have the pain around the anus and inside a little so much so that you refrain from intercourse??? i know that this is terribly personal but i feel that it might help someone else to know that i am this way. and i need the help also . also, my radiation oncologist at MDA is mortified that i have not tried intercourse yet but of course he has not had anal cancer issues. thanks sephie

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

Your fears are well-grounded and I think many female AC survivors could all relate. I agree, actually having intercourse is much different than using the dilator. However, with patience and understanding, it becomes possible. My one and only recommendation--girl on top. This gives you more control. I don't need to say anymore.

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

yes, i had thought that "on top" would be the only way. thankyou sephie

mbh97766's picture
mbh97766
Posts: 39
Joined: Nov 2010

I too, am having trouble resuming intercourse. I am only 3 months out of treatment, and haven't been as dilligent with the dialator as I should be. My problem is vaginal dryness. Sometimes I feel so dry that it wakes me in the middle of the night. And no matter how much, or what type of lubricant we use, I still suffer from terrible pain, that it makes the whole thing very unpleasant. But we keep trying, because as they say, "use it or lose it". I have found that if I take an oxycodone (pain med) beforehand, it makes me relax more, as well as my husband. Maybe, after time, I won't need the pain meds anymore? One can only hope.

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

My gyno prescribed Vagifem vaginal tablets for me and they have helped quite a lot. You begin them by using one every day for 2 weeks, then just one two times per week. My dilator is not painful to use anymore and intercourse may be possible in the near future. Also, between applications of the tablet, my doctor told me I could use Replense, which is an OTC medication to decrease vaginal dryness. You might want to talk to your doctor about these.

tramoo2
Posts: 9
Joined: Jul 2011

what is a dialator.......
i feel like someone forgot to tell me about something.....
i have been having vaginal dryness and tightness. no pain with sex, other than the
uncomfortable tightness.
was i susposed to get a dialator

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

it is a very soft penis --looking thing that is in graduated sizes which u insert into the vagina to help open up the vagina (which closes due to radiation due to scar tissue) but it sounds like you did not have this side effect if you can have sex and no pain. vaginal dryness would happen to any woman as she gets older and menapausal or perimenapausal. great for u that u can have sex. sephie _ -

shirlann54
Posts: 161
Joined: Aug 2011

It's been 7 mo after treatment for me .It hurt having sex .I didnt think i could ever have good sex again.It had been about 3 mo.I went to a gyn he said i have scar tissue in my vagina.He give me a cream that you put in side .It is called Premarin vaginal cream i use it 2 to 3 times Week. It was about 3 weeks and it was allready getting better .Now we can have sex again and i can injoy it. I could'nt have had sex without this.My radiation Dr is the one that got me an appt with a gyn.

pjs62
Posts: 95
Joined: Sep 2011

Its great to know I'm not alone in this!! I was never warned about these 'side effects' from treatment therefore know nothing about this 'dialator' (or whatever it is! haha
My husband is a saint as its been about a yr since we had any 'contact' but we try little ways to help me relax. But still so painful I'd rather avoid sex completely! I'm even afraid to see my gyn dr since it hurts so much.
I'd really like to feel like a 'real woman' again & enjoy a healthy sex life with my hubby (or at least close!) but not sure where to begin getting answers or solutions. (esp since the cancer is back).

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

i also have a patient hubby. but still worry about his needs. try to do other things but i still am not in to that very much. i use Estrace cream 1 or 2 times per week and the dilator but still have pain just walking or sitting. scared to death of pulling. i am so fearful that it carries over to my hubby that admits he does not want to hurt me in any way and we have to be so careful that it seems just stupid to try. oh well sephie

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

i also have a patient hubby. but still worry about his needs. try to do other things but i still am not in to that very much. i use Estrace cream 1 or 2 times per week and the dilator but still have pain just walking or sitting. scared to death of pulling. i am so fearful that it carries over to my hubby that admits he does not want to hurt me in any way and we have to be so careful that it seems just stupid to try. oh well sephie

melbas2
Posts: 108
Joined: Aug 2010

Hey Sephie, I am almost 7 months pot, and my hubby and I have tried to have sex 3 times. I didn't hurt that much when I was a virgin. lol.Seriously, He sleeps on the couch cuz if he rolls over and like puts his leg up on me or whatever, it hurts. Since all this, I feel like I still have a tear in my left side on my butt, kinda just like inside, but if I sit a certain way, or try to lay a certain way, I feel like I'm tearing my ass open. We've been married for 15 years, but I'm still afraid he'll get sick of this no sex thing and go get it somewhere else. I don't have the answers, but you are not alone in your fears. Melodie

7243
Posts: 211
Joined: Feb 2011

I'm 5 months out and feel exactly as you did when you were 7 months out... how's it going?
We've tried sex 3 times ... so painful ...

alis7910
Posts: 80
Joined: Jun 2010

Hi:
I have not had sex for years, but my vaginal dryness got worse after the radiation. I was prescribed estrace homone cream, which has helped tremendously. The vagifem was not enough for me.I did try dilators for a while, and then by physician removed the adhesions in the office, which was very painful. He told me at the time that they would return, which they have. I know I could not have intercourse if I wanted to at the present time.
My suggestion to you would be to honor your body and the messages it is giving you. You are the only one who can say what you need. My feeling is, if you are loved enough, then your needs will be respected. After all that you have gone through, you should not have to compromise your own feelings.
hugs to you

alis7910
Posts: 80
Joined: Jun 2010

Hi:
I have not had sex for years, but my vaginal dryness got worse after the radiation. I was prescribed estrace homone cream, which has helped tremendously. The vagifem was not enough for me.I did try dilators for a while, and then by physician removed the adhesions in the office, which was very painful. He told me at the time that they would return, which they have. I know I could not have intercourse if I wanted to at the present time.
My suggestion to you would be to honor your body and the messages it is giving you. You are the only one who can say what you need. My feeling is, if you are loved enough, then your needs will be respected. After all that you have gone through, you should not have to compromise your own feelings.
hugs to you

sissy310
Posts: 300
Joined: May 2010

I too have not had sex maybe once in the last two years - since the issues with bleeding and pain cropped up with diagnosis and then during and after treatment worsened. We tried once and it was both painful and just uncomfortable. Right now I am just seeing a gynecologist after a long long time (was told since I had a full hysterectomy did not need a pap or anything) and maybe can get some of this resolved. My husband, bless him, is pretty considerate about all this. I also agree with Alis that listening to your body and I loved the phrase "honor your body and the messages it is giving you"

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

i appreciate all of you who have responded to this personal issue. this site is such a blessing to me and helps me. i do hate that there are so many of us suffering with this mess but hopefully the docs will learn more and more and improve on this treatment so that others will not have all of these side effects. soon after completion of my tx at MDA ( july 2009), they started placing a dilator in the vagina during radiation to help with the closing issue. good thinking. so i think they are learning more and more as more of us are diagnosed with this anal cancer. thanks again sephie

SueRelays
Posts: 489
Joined: Dec 2009

Had to chime in.....

I thought I would never have sex again, and certainly if I did, I would not be the one enjoying it! But with patience and time, the pain and dryness went away, and I can happily say I am enjoying sex again, although I do not have it near as regularly as BAC ( before anal cancer). Still can't be as carefree and experimental as before. Only a couple positions are comfortable, but I do feel somewhat "normal" again!

sandysp's picture
sandysp
Posts: 734
Joined: May 2011

Thanks for your lovely chiming:-)

Angela_K
Posts: 370
Joined: Jan 2011

Sephie ~ It is scary coming out of treatment with 'things' not what they used to be. I am three months post treatment and have some moderate vaginal pain which has resultetd in my husband and I getting more creative in the bedroom. We bought a vibrator that we both find pleasure in using on each other and we've found that sex side by side facing each other is the least painful and most pleasurable for me. There's other things that we've done for the first time in our 12 year marriage that I will leave to your imagination! Yes, sex is not what it used to be. But, I've discovered that's not necessarily a bad thing.

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

I do really appreciate your sharing. this gives me hope . thankyou sephie

sandysp's picture
sandysp
Posts: 734
Joined: May 2011

Our sex life was almost non-existent before the diagnosis. We would have sex and then for days I would feel like my insides was trying to get to my outsides. I didn't make the connection, believe it or not, but the sex became more and more frustrating and we both blamed our relationship.

Now my husband and I are having rather pleasant conversations about reintroducing ourselves to our sex life again when treatments and healing are in the right place. He is a very sweet man and we will just have to focus and be patient.

As far as worrying about my marriage, I've learned to give it to God since I can only do my half and only as well as I am physically and emotionally able. Getting to this point has helped my relationship with God a lot. I rediscovered my first love.

Memphis Mary 49's picture
Memphis Mary 49
Posts: 52
Joined: Aug 2011

I am new to CSN and post treatment by 17 days. When are we supposed to begin vaginal rehab (dilators, creams, PT)? Are there gynecologists that specialize in post radiation treatment? My husband and I tried it a couple of days ago - needless to say that was a big "no go"!!

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

Hi Mary--my rad onc gave me my dilator on my last visit and told me to begin using it as soon as I could tolerate it. I guess it's pretty much of an individual thing. As for gynos that specialize in post-radiation, try a gyno oncologist if you can get in with one. They would probably have the most knowledge about these types of things. I wish you all the best.

Angela_K
Posts: 370
Joined: Jan 2011

Fortunately, my gyno at my treatment facility and my gyno here are good friends and they communicate well regarding my needs. But actually, it was my radiation onc who gave me the dialator after a 3 month post visit. At the nurses station following my exam she told her/my nurse to get me a dialator. The nurse whispered to the doc, "What size?" and the doc said, "Small." I said, "Are you kidding me? Extra large please. If I've gotta do this, I'm going to enjoy it!" True story. (I did come home with a medium.)

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

i have them all sizes. can NOT do the larger one- have tried and it causes bleeding and pain. will not take chance of tear. i am so afraid of tearing the anal area from pulling on the tissue that i do not have any fun even trying to have sex. i do the dilator for 10 minutes almost every day and estrace cream. i am trying but my poor hubby. i am at 25 months post tx and the docs are going to be upset at MDA when i go in Sept and tell them that i have not had sex-- the one female understands. I am going to tell them that my hubby is too LARGE> hubby laughed at this. should give him the big head ( both heads). he will be proud. sephie

7243
Posts: 211
Joined: Feb 2011

I'm six months post treatment and recently saw my GYN doctor due to painful sex and vaginal burning. I was given a medium dilator after treatment and frankly could not tolerate using it until about 3 or more weeks post treatment. Everything in that areas seems to have "shifted". Actually I stopped using it because it was so uncomfortable. My husband and I have only attempted intercourse 3 or so times after treatment ... it's pretty darn uncomfortable; burning and tightness. Ok ... so I'm now using Premarin vaginal estrogen cream for 7 days straight to get the estrogen "kick started" in and around my vagina. Followed by twice a week use. They've ordered a graduated set of dilators (the rad onc only gave one which is sort of crazy when we're trying to get my vagina "gradually" stretched out and back in shape, so to speak). And, I'm going to start to work with a physical therapist with my dilators. The issue as it was explained to my by GYN, is we have a pain response related to sex ... given it is and has been painful. The PT will work me to get beyond the pain response to impending sex ... (tightening of muscles etc.) So, PT is an option, however it's pretty specialized but not unheard of. Many men and women have PT for incontinence. So, we'll see how it goes. My husband and I do other things to satisfy our need for intimacy and physical closeness ... and if I never have penis/vagina sex, I can "live" with that .... because living is most important. In fact, my husband and I are closer than ever before and we were pretty darn close to begin with! hugs to you all! Keep up the good fight. xo

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

great that you have a PT person who knows about this stuff. i really think that is smart. i am in a small town and can not even find a gyno that relates to the radiation issues to the vagina so i go to the gyno in houston at MDA. sephie

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

Your PT will likely educate you in pelvic floor exercises. I was supposed to do this, but the only PT in my area that specializes in this recently left a group practice and went out on her own and my ins. benefits for private practice PT's suck, so I didn't do it. I hope you see some benefit from it.

7243
Posts: 211
Joined: Feb 2011

my benefits suck with regard to this as well .. may have to self pay. I've learned too much through this process. What state are you in ... share only if you want.

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

I live in Georgia. My recommendation to you would be to schedule 2 or 3 visits with the PT and learn as much as you can about a home exercise program that you can do without having to rack up big bucks in PT charges. I worked in a PT clinic for quite a few years and this is common practice when people have little or no benefit for PT services. Tell your PT upfront that that's what you want--a home ex program. Perhaps a follow-up visit could be scheduled at some point so you could be evaluated for progress. Doing this will only cost you a few visits.

7243
Posts: 211
Joined: Feb 2011

Yes, that's my plan and I appreciate your input and sharing!

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

Good luck with the PT--I hope it will help you!

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