Let's Talk about Sex, Babee (Salt N' Pepa)

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  • susan1069
    susan1069 Member Posts: 30
    #22
    Sex - Yikes!
    Well, my oncologist gave me radiation treatments with a vaginal dilator in place, and it was a little embarrassing, but the nurses and I laughed and I even named it.

    After treatment was over, I was told to use the dilator twice a week until I resumed normal sexual activity. I asked if that meant I needed to have sex twice a week and the doctor said yes, and the nurse and I looked at each other and rolled our eyes. My husband and I have been married ten years, have 2 young children, and we're lucky if we have sex twice a month, let alone twice a week, but whatever.

    Anyway, I'm out of treatment for 3 months now and I'm still using the dilator and I'm scared to death to have sex. Nothing is fused shut exactly, but it's all different and I swear I look like I'm 12, between the shrinking and the loss of hair. I take an estrogen tablet suppository to help with the vaginal dryness, but my ob/gyn said def. use a lot of lubricant, like KY Gelee.

    I'm not sure how to ease back into this sex thing, but let me know how it goes for you. If I never had sex again at this point, I wouldn't miss it, but I'm sure my husband feels differently. Keep me updated. :)
  • ACW189
    ACW189 Member Posts: 24
    #23
    Use of dilators
    There is another discussion on the topic on rare cancer alliance blog. It's GOOD that we talk about this. I'm 15 months out of treatment and feel fortunate that my radiation oncologist gave me dilators while I was still in treatment. I used them as soon as it was comfortable; inserting a little at time until I was able to get the entire thing in. It took a few tries. We sought advise from our radiation team (nurses were the best!...they hear it all :)about when the best time was to resume sex. Just a reminder; the use of dilators (or having intercourse...or combination) 2-3 times per week will be indefinate. I was told I would always have to use something (my man or the dilator) to keep the vg open. Not a problem, when I use the dilator I just insert it in the morning while I put on my make up...give it a few turns and move it around a bit; keep my legs together and keep it in about 5-10 minutes and I'm done.
  • cujuja4evr
    cujuja4evr Member Posts: 106
    #24
    ACW189 said:

    Use of dilators
    There is another discussion on the topic on rare cancer alliance blog. It's GOOD that we talk about this. I'm 15 months out of treatment and feel fortunate that my radiation oncologist gave me dilators while I was still in treatment. I used them as soon as it was comfortable; inserting a little at time until I was able to get the entire thing in. It took a few tries. We sought advise from our radiation team (nurses were the best!...they hear it all :)about when the best time was to resume sex. Just a reminder; the use of dilators (or having intercourse...or combination) 2-3 times per week will be indefinate. I was told I would always have to use something (my man or the dilator) to keep the vg open. Not a problem, when I use the dilator I just insert it in the morning while I put on my make up...give it a few turns and move it around a bit; keep my legs together and keep it in about 5-10 minutes and I'm done.

    Susan and ACW
    Well, doggone it!!! My vagina fused! You can check out my discussion topic on this board. (Good News...Bad News..) I met with my gyn today and she was unable to get a Q-tip with KY Jelly inserted in vagina. I have to see an Onc Gyn. My GYN thinks that I'm gonna need surgery. I don't even have the "luxury" of using dialators because that sucker is completely closed up!!!! My appt with Onc Gyn is on September 1st! I'll keep you posted!

    Judy
    (frustrated!)
  • cujuja4evr
    cujuja4evr Member Posts: 106
    #25
    susan1069 said:

    Sex - Yikes!
    Well, my oncologist gave me radiation treatments with a vaginal dilator in place, and it was a little embarrassing, but the nurses and I laughed and I even named it.

    After treatment was over, I was told to use the dilator twice a week until I resumed normal sexual activity. I asked if that meant I needed to have sex twice a week and the doctor said yes, and the nurse and I looked at each other and rolled our eyes. My husband and I have been married ten years, have 2 young children, and we're lucky if we have sex twice a month, let alone twice a week, but whatever.

    Anyway, I'm out of treatment for 3 months now and I'm still using the dilator and I'm scared to death to have sex. Nothing is fused shut exactly, but it's all different and I swear I look like I'm 12, between the shrinking and the loss of hair. I take an estrogen tablet suppository to help with the vaginal dryness, but my ob/gyn said def. use a lot of lubricant, like KY Gelee.

    I'm not sure how to ease back into this sex thing, but let me know how it goes for you. If I never had sex again at this point, I wouldn't miss it, but I'm sure my husband feels differently. Keep me updated. :)

    Fear Factor
    I know what you mean. I think I'm going to be a nervous wreck whenever hubby and I finally get to sex. Now, we'll have to wait even longer. I'm okay with it, but I'll have to be creative cause poor guy is gonna need some attention...sooner or later!

    I think my pub hair is finally beginning to grow some peach fuzz! At last, some good news!!!

    Oh, what we have to go through!
  • cmhla49
    cmhla49 Member Posts: 4
    #26
    SueRelays said:

    Don't want to reitterate
    Don't want to reitterate what has already been said, but I did wonder if I would ever enjoy sex again. It's been 2 years and alot has happened in between.....but I am happy to say things are NORMAL!!!!

    It will happen :)

    Glad to hear it!!
    Did you use the dialators? Or did you just 'stretch' back out because you were having sex? This is a real area of concern for me as I'm not quite big enough and then when we do it, I bleed.
  • pjjenkins
    pjjenkins Member Posts: 173
    #27
    cujuja4evr said:

    Susan and ACW
    Well, doggone it!!! My vagina fused! You can check out my discussion topic on this board. (Good News...Bad News..) I met with my gyn today and she was unable to get a Q-tip with KY Jelly inserted in vagina. I have to see an Onc Gyn. My GYN thinks that I'm gonna need surgery. I don't even have the "luxury" of using dialators because that sucker is completely closed up!!!! My appt with Onc Gyn is on September 1st! I'll keep you posted!

    Judy
    (frustrated!)

    So sorry, Judy
    Please keep me posted on the surgery fix. I am, at 66, very ambivalent about whether to have surgery or not. The dilators have not worked completely and I am unable to have PAP smears - or normal sex. To date I have not pursued surgery as my gyn pleads out of it and he is, in any case, retiring. I see my rad onc in September and plan to discuss it with him. Him whom I sincerely hope will never irradiate another woman's pelvis without prescribing use of dilators!!!!
    Also frustrated,
    Priscilla
  • susan1069
    susan1069 Member Posts: 30
    #28
    cujuja4evr said:

    Susan and ACW
    Well, doggone it!!! My vagina fused! You can check out my discussion topic on this board. (Good News...Bad News..) I met with my gyn today and she was unable to get a Q-tip with KY Jelly inserted in vagina. I have to see an Onc Gyn. My GYN thinks that I'm gonna need surgery. I don't even have the "luxury" of using dialators because that sucker is completely closed up!!!! My appt with Onc Gyn is on September 1st! I'll keep you posted!

    Judy
    (frustrated!)

    Vagina Fused
    Well, Judy, that totally sucks. I didn't realize it at the time, but now that I see all the problems everyone's having with their vaginas, I see that no woman should go through this treatment without using the dilator from the beginning of treatment all the way through and then after. I wasn't thrilled with the way my onc handled everything, but I'll give him props for insisting on it. I've had aa couple of internal exams since treatment ended 3 months ago and they only hurt a little.

    Good luck at the Onc Gyn. I hope they have some help for you.
  • Majulie
    Majulie Member Posts: 8
    #29
    cujuja4evr said:

    I wish I knew you back then!
    What is the right time to get started? I'm 6 weeks post treatment. Is it too soon? I've read on here that someone actually had dialator in during treatments. I wish I knew all of this before now. My rad did not give me the slightest hint of what to expect from radiation except for the fact that the treatment was going to be rough and that my ovaries would shut down which would send me into immediately menopause! She did not get into any specifics so I really went through this with my eyes closed. I didn't get much help or information from my rad and I mostly figured everything out on my own. I wish I knew you back then! Hey, I did go online and saw the dialator set. Should I just order the set or is this something a doctor can actually prescibe? It would be nice to have insurance cover the cost? I wonder if that's possible? I mean if I suffered atrophy because of necessary radiation treatments, then why couldn't they prescribe it as a necessity because of the side effects. Hmmmmmmm, interesting.

    I got the dialator from my
    I got the dialator from my rad onc about 2 weeks after treatment, and waited a few weeks before I used it. You have to lube it up good, and then you have to totally relax. Lots of deep breathing. To me, and I 41 and one year (to the day) out of treatment, it seems like you also have muscles working against you, like the muscles in the vag area are very tight. I often used it in the bathtub. It is mainly uncomfortable. The real problem now, is that I am not producing estrogen and the walls of the vag area have thined out, thus when my husband and I do have sex, which I try to have 2x week, it tears and bleeds a little. I myself, am beginning to wonder if it will ever be the same. I know, TMI, but the whole menapause thing seems to be such a mystry. I thought it was just about being extremely moody and having hot flashes. I had my annual exam with my gyno, and she prescribed some estrogen cream that is suppose to help, so we'll see. Yes, interesting to say the least. Hang in there!
  • Majulie
    Majulie Member Posts: 8
    #30
    ShellWell47 said:

    sex post treament
    Just like treatment affects every body differently, so goes post sex. My husband and I actually prayed about this one alot throughout treatment because we are very close and didn't want to lose our sexual relationship, and a lot of what I read wasn't encouraging. I did get a dilator from my radiologist and used it about 5 times. In hindsight, I don't feel my gynecologist or radiologist really knew anything more than what we read on this board, again, everyone is different and they of course don't really know case to case, but one way of their tracking "what happened during our treatment" is their asking about our sex lives (anyway my doctors always ask). We didn't attempt intercourse until about 2 months post treatment. I had a lot of anxiety. In the beginning it was painful and we used a lubricant for awhile. My husband said he didn't feel anything different, but I sure did. It felt very tight and hurt. However I continue to persevere, and now it is not really painful, 3 months after first having sex again. I may be going thru early onset menopause from treatment (I'm 46), so until that is identified I may not be a great gauge as I note that I'm not always as "in the mood" as I used to be. However, like yours, my husband is awesome and he truly lived his marriage vow to love me in sickness and in health-he served me well and I want to serve him by persevering thru the pain - a glass of wine helps me relax. We don't need lubricant anymore but I do continue to bleed after and there is what feels and looks like scar tissue breaking down when I urinate. However, this is less and less. Going thru cancer was a fight, and I believe like another poster alluded, God will help our bodies fight through all the post issues like sex. All in all it has brought us closer. There will be "new norms" for all of us post cancer, and although sex may never entirely be what it used to be, I have all Hope things will work out for good in the end. On a positive note, I am entirely freer, more comfortable with my body and much much less obsessed with how I look, probably because I am just so dang glad to be Alive! Stay thankful for every day and try not to dwell or put on a pedestal "how it used to be". Embrace the changes for what they are today, remain hopeful and prayerful, and persevere even if its painful at first. God bless you!

    Thank you
    ShellWell47,
    Thank you for the very positive and uplifting post! You are so right with what you said. I really needed to read this. Thank you again!
  • cujuja4evr
    cujuja4evr Member Posts: 106
    #31
    pjjenkins said:

    So sorry, Judy
    Please keep me posted on the surgery fix. I am, at 66, very ambivalent about whether to have surgery or not. The dilators have not worked completely and I am unable to have PAP smears - or normal sex. To date I have not pursued surgery as my gyn pleads out of it and he is, in any case, retiring. I see my rad onc in September and plan to discuss it with him. Him whom I sincerely hope will never irradiate another woman's pelvis without prescribing use of dilators!!!!
    Also frustrated,
    Priscilla

    Patience if a Virtue
    Thanks. I'm not necessarily looking forward to having surgery if necessary, but if it means that it will give me some chance of having some type of sexual activity with hubby again, I'll just have to do what I need to. Well, like the ole saying goes, "Patience is a virtue.

    My appt with Gyn Onc is on Sep 1st. I'll post to let you know what's going on with me.

    Thanks for your support!
  • cujuja4evr
    cujuja4evr Member Posts: 106
    #32
    susan1069 said:

    Vagina Fused
    Well, Judy, that totally sucks. I didn't realize it at the time, but now that I see all the problems everyone's having with their vaginas, I see that no woman should go through this treatment without using the dilator from the beginning of treatment all the way through and then after. I wasn't thrilled with the way my onc handled everything, but I'll give him props for insisting on it. I've had aa couple of internal exams since treatment ended 3 months ago and they only hurt a little.

    Good luck at the Onc Gyn. I hope they have some help for you.

    It is what it is.
    I'm getting used to the idea that I have some obstacles to overcome and it's not going to happen overnight. It is what it is. I'll do what I need to do to get back to normal as I'm able to. Thanks for your support. I'll let you know outcome of appt with Onc Gyn on Sep 1st.
  • tiny one
    tiny one Member Posts: 465 Member
    #33
    It's possible to get the old groove back
    I had given up on thinking that I could restretch the vaginal area. It has been 3 years since radiation. A nurse assured me that this is possible. Astroglide is working very well, along with replens. You must devote at least 10 minutes every day to this. It is possible. Patience and persistance is the key.

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