Anyone willing to talk about sex?

zsazsa1
zsazsa1 Member Posts: 568 Member

Well, I've gotten answers about so many other things, I figured I might get some advice and hopefully reassurance.  I am 2.5 weeks out from what's hopefully my last chemo.  Surgeon's NP said I was completely healed, placed markers (wow did that hurt) about two weeks ago, I think?  I'm starting pelvic IMRT in a week.  So I decided it was time to try, for the first time since I was diagnosed, to have intercourse.  NP said it was okay.

Interesting.  I haven't been irradiated yet, but my vagina was definitely tightened up (no surprise, after 6 months without having intercourse), but it is also most definitely shorter, maybe by about a third!  We were very, very careful, but I could tell that my vagina is much shorter, because I was very careful to go no farther when I could feel some mild discomfort. Afterwards, I had blood-tinged secretions, even though I'm no longer on a blood thinner.  I didn't have frank  bright red blood.  I'm thinking that I should call the surgeon's NP tomorrow and ask them if they can look at the cuff again.  I don't see how I could hav torn it - we were SO careful.  And yes, we used a surgical lubricant, so it wasn't from friction trauma.

If it's like this now, I can only imagine what it's going to be like after radiation therapy.  But I'm determined not to lose this part of my marriage and my life, if I don't have to.

Comments

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    It's been discussed several

    It's been discussed several times here but, how to find those threads? I know several ladies here are very computer savvy and I'm sure they'll be around soon to tell you how to find them.

    Love,

    Eldri

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    Debbie Downer.

    I hate to be a “Debbie Downer” but I’m going to be frank with you. I had 28 days of external radiation and 3 brachy. Had successful intercourse ( we’ll, sort of) during and after chemo. I did everything I was supposed to do regarding using the dilator and trying to keep sufficiently lubricated.  I even had pelvic floor physical therapy. I had radiation cystitis for a while that frankly made sex not a priority. Despite these efforts it never really worked for us.  It was painful for me and I do think my vagina was significantly shorter although my therapist said that shouldn’t be a problem. As a result, it’s one more thing cancer took from me. I hope that is not the case for you and I know there are other gals that successfully preserved that part of their lives. 

  • zsazsa1
    zsazsa1 Member Posts: 568 Member
    Oh..... I just did a search

    Oh..... I just did a search back through old threads.  It's sad, and depressing.  So many not here.

    Kudos to those who managed to continue a sex life during chemo!  I never felt good enough, always felt sick.  But now, even though I'm less than 3 weeks out from the last round, I feel so much better that I'm willing to try, and I'm glad I did.

    I will call surgeon's office today and insist on being seen.  It just doesn't seem right to have bleeding this far out from surgery.  It stopped almost immediately, so hopefully it's just that the tissues are delicate and friable.

    I'm dreading the radiation, but I made my decision.  Going through the old threads only reinforces that decision in me, to do everything I possibly can to survive this.  I just hope that somehow I'll be able to preserve this part of my life.  I'm only 57, so's my husband, not yet ready to give up on that.

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    Just some information that may help

    I had to have 8 brackys plus 25 external for a recurrance.  I was not given a dilator after the first 4 brackys but was after the second 4. I was OK for 3 mos with dilation. After a rough pelvic, also on blood thinners, had bleeding for 2 weeks. Went to talk to all docs and after trying dilation one more time, told the docs I was done. My advice is this - talk to the docs BEFORE rads and begin dilation ASAP after. Be diligent because if you miss much time, it is hard to use. I do not have a SO so not worried about sex at 79Innocent, but I do think from what my radiologist told me that my gyn/onc should have started me on dilator a year earlier after the first 4.  Also, please know there are many ways to pleasure each other and some are more exciting than the regular way Surprised!  I had 30 sweet years with my husband and I wish you many more with yours. Never say never!

  • zsazsa1
    zsazsa1 Member Posts: 568 Member
    The gyn onc NP fit me in

    The gyn onc NP fit me in early this AM.  She says cuff is fine, that there's a tiny area of friable vaginal tissue that is definitely NOT a recurrence, and that's where the bleed came from.  And yes, I AM shorter than I used to be!  She said she biopsies ANYTHING that looks suspicious and that this doesn't look suspicious.

    I will start using the dilators as early as they will let me.  I've already discussed it with my rads onc doc.  Donna, don't worry!  Believe me, we "youngsters" know a million different things to do!  But more for my husband's sake, I'd hate to have to give up vaginal intercourse.  And of course, it's very important for the gyn onc to have access to the area, for future exams.

  • evolo58
    evolo58 Member Posts: 293 Member
    Also, please realize ...

    That ...

    OK, this is a public board and I REALLY have to be careful here ...

    There are other ways of achieving mutual satsifaction. There isn't just one way. Or you can use those avenues until such time as you're ready to have a go at it. :)

    I think that many men and women think there is only one avenue to get that mojo back.

  • The Storm
    The Storm Member Posts: 20
    Good News about sex life

    Here's some good news for you. I had 25 external rad treatments. I did not have any brachy(by the grace of God it wasn't needed). That was going on 6 months ago. I have had no problems. I had some external irritation towards the end of treatment, that was it. My husband and I stayed relatively active throughout treatment. Some weeks it was a no way, but if I felt like it we did so very carefully and no issues. I was given a dilator, I used it a few times without any problems. When I saw my gyn onc the beginning of January, she told me I was fully healed and that I did not need to use it anymore. Maybe I was just lucky, but radiation was a piece of cake for me. I do not usually give advice but here goes.

    Some advice I would give. Go out and buy the following: Dove unscented soap, use it and only it during treatment, Vitamin C take extra to help your bladder - make sure your Dr. knows, drink cranberry juice every day again for your bladder. I had my treatments after work everyday. When I got home, I would lie down on my bed bare from the waist down and let things air for about 30 minutes, helps the skin and the fatigue. Seamless boy short underwear helps keep skin from rubbing on skin. Your nurse will give you a diet, follow it when you get diarrhea it does help. Also, high dose probiotic and Immodium , are very helpful.  Good Luck and don't despair it is possible to not have issues. 

     

  • zsazsa1
    zsazsa1 Member Posts: 568 Member
    evolo58 said:

    Also, please realize ...

    That ...

    OK, this is a public board and I REALLY have to be careful here ...

    There are other ways of achieving mutual satsifaction. There isn't just one way. Or you can use those avenues until such time as you're ready to have a go at it. :)

    I think that many men and women think there is only one avenue to get that mojo back.

    Heehee, I am a late baby

    Heehee, I am a late baby boomer, came of age in the late 70s.  Believe me, we thought of and did EVERYTHING.  But I would like to have vaginal intercourse in the mix.

  • zsazsa1
    zsazsa1 Member Posts: 568 Member
    The Storm said:

    Good News about sex life

    Here's some good news for you. I had 25 external rad treatments. I did not have any brachy(by the grace of God it wasn't needed). That was going on 6 months ago. I have had no problems. I had some external irritation towards the end of treatment, that was it. My husband and I stayed relatively active throughout treatment. Some weeks it was a no way, but if I felt like it we did so very carefully and no issues. I was given a dilator, I used it a few times without any problems. When I saw my gyn onc the beginning of January, she told me I was fully healed and that I did not need to use it anymore. Maybe I was just lucky, but radiation was a piece of cake for me. I do not usually give advice but here goes.

    Some advice I would give. Go out and buy the following: Dove unscented soap, use it and only it during treatment, Vitamin C take extra to help your bladder - make sure your Dr. knows, drink cranberry juice every day again for your bladder. I had my treatments after work everyday. When I got home, I would lie down on my bed bare from the waist down and let things air for about 30 minutes, helps the skin and the fatigue. Seamless boy short underwear helps keep skin from rubbing on skin. Your nurse will give you a diet, follow it when you get diarrhea it does help. Also, high dose probiotic and Immodium , are very helpful.  Good Luck and don't despair it is possible to not have issues. 

     

    THANK YOU, STORM!!!! This was

    THANK YOU, STORM!!!! This was just what I needed to hear.  I know that everyone is different, but at least now I know that it's possible that I'll be okay and not lose this part of my life!  Yes, acidifying the urine really does help to prevent UTIs, so I will make sure to use the vitamin C.  I'm scheduled for I think 30 rounds of pelvic IMRT, but no brachy, since I had no involvement of the lower uterine segment or cervix.  I don't know if I'll be able to get through it all, but I'm gonna try.

  • cmb
    cmb Member Posts: 1,001 Member
    My Experience with Radiation

    zsazsa1,

    As you say, everyone is different. But for me, radiation was much easier than chemo. I did have to follow the bland, low fiber diet to control diarrhea, but otherwise I felt okay for the first four out of five weeks. The last week I developed bladder inflammation, which felt just like a bad UTI, but wasn't. That was annoying while it lasted, but it was gone a couple of weeks after radiation ended.

    I wasn't given a dilator. I haven't had a partner for a few years, so I can't speak to any issues with sex, but there haven't been any problems during my physical exams with the gynecological oncologist. Chemo left me with mild neuropathy in the balls of my feet and very thin hair. But so far I haven't experienced residual side effects from radiation.

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    zsazsa1 said:

    THANK YOU, STORM!!!! This was

    THANK YOU, STORM!!!! This was just what I needed to hear.  I know that everyone is different, but at least now I know that it's possible that I'll be okay and not lose this part of my life!  Yes, acidifying the urine really does help to prevent UTIs, so I will make sure to use the vitamin C.  I'm scheduled for I think 30 rounds of pelvic IMRT, but no brachy, since I had no involvement of the lower uterine segment or cervix.  I don't know if I'll be able to get through it all, but I'm gonna try.

    Definitely talk to your rad

    Definitely talk to your rad onc about the vitamin C first. Most don not want antioxidants during radiation due to possibly interfering with how radiation works. 

  • zsazsa1
    zsazsa1 Member Posts: 568 Member
    This is so encouraging to

    This is so encouraging to hear!  I'm highly motivated to get through the radiation, and to maintain a functional vagina, for sex and for exams.  I will ask radiation onc about vitamin C.

    I'm just so grateful for the information and support of the women on this website.  It's so helpful to have the advice of those who have gone through it.  I'm happy now to be able to give info to those just beginning their treatment journey.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    zsazsa1, I had 5

    zsazsa1, I had 5 brachytherapy treatments along with the standard carbo/taxel routine. I am 3 years out from my final brachy. I used the dialator 2 Xs per week or had sex for 2 years without fail. This last year I tapered off of both and have not used my dialator in the last 6 months.  So far, so good. No issues. A few things that helped me and continue to help me:  I use a prescription level lidocaine on the outside of my vaginal opening and a bit inside about an inch in.  I also use surgical lubricant generously. Please know that you may get some pinkish stuff after either sex or dialator. This is normal. Our tissue has changed and gets irritated easily.  Also, I sometimes get "itchy" after either action and I use a vitamin E suppository before I go to bed. Works great to relieve the itching.  Finally, my libido isn't so great these days. We aren't as active as we used to be but everything still works when we choose to partake.... Foot in Mouth  I hope this helps!

    Love and Hugs,

    Cindi