CSN Login
Members Online: 6

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

cujuja4evr
Posts: 106
Joined: Jul 2010

I see every other topic on the board, but this one - SEX. What happens from here? I am only 6 weeks post treatment, but I'm still a newly wed! My husband and I have been married almost 10 years and he has been a real sweetheart! When I hit the worst of my treatment, I told my husband that he had to stay away from that area for six months to a year! All joking aside - I'm actually afraid to even think about having sex! Can someone please shed a light of hope so that I know that one day I can get back to normal. My whole pelvic region has been through enough, but I would like to be able to look forward to having sex with my hubby again. He's extremely understanding and patient.

mp327's picture
mp327
Posts: 2819
Joined: Jan 2010

Did your doctor give you a vaginal dilator? During radiation, the vagina can atrophy (or shrink) both in width and length. A vaginal dilator is used to open it back up, making sex possible again. Now, I have to be honest with you, I've used a vaginal dilator for almost 2 years now and have been able to go up a couple of sizes, but sex is still uncomfortable for me. Topical estrogen creams can help, along with OTC Replens, to make the vagina more elastic and less dry. The dilator, to be most effective, has to be used on a regular basis with plenty of lubricant. I would suggest you ask your doctor about one, or they can be ordered in a set online. If you need more info about where to order them, I'd be happy to provide. Resuming sex after this treatment can take some effort, but it's very possible, so please don't get discouraged.

cujuja4evr
Posts: 106
Joined: Jul 2010

I thought for sure someone would think that I was crazy to even be thinking about sex especially after everything that I've been through. Believe me, sex is something I'm definitely not planning on having any time soon. My new skin is still real sensitive and skin is still forming so I'm not going to mess anything up. But, sorry if TMI, but when I put my finger right at the vaginal opening, I can't even get the tip of my finger in. It really feels as if it's closed pretty tight. Who do I talk to? My GYN? I went to her once before because the radiation had caused the labia to completely fuse together. My husband and I had the unpleasure of separating it ourselves and the only way I can describe it is unpeeling velcro. On top of everything else I was going through, this was awful! It's bad enough that I had to have emergency surgery to have my urethra dialated because it closed and I had to have a foley catheter in for 3 weeks. I'm really nervous now. My GYN had scheduled me to have a PAP in September. Do you think that maybe too soon? Should I speak to my radiologist or oncolist about this before I see the GYN. I tell you, if it's not one thing...it's something else.

sandra malone
Posts: 34
Joined: Apr 2010

i WAS GIVE THE dILAOR YOU SPOKE AND THE CORRECT MANNER in which to use it.IN my case I did ) times. I am somewhat sexually active 1-2 wkly less if theres no preesure.....I do not aue my dialotor mostly I forget. I live in a Boardung House of sort.Men, women,a 2 yr old..so privacy is out of the question. What did help the most was inserting it before I shower or bathed.Moist body.... Hope this helps in some smll way.GOD will make A WAY. He always does Has so far, right? Till Then God Speed.I wouls
d welcome any response not use it (-

CharlotteW
Posts: 7
Joined: Apr 2010

I'm so glad you have an understanding husband to help you through this. I know how you feel about if it's not one thing it's something else. I'm a 61 year old who's 3 yrs out of treatment. I wish I had used the dilators earlier. No one told me about them until the damage was done. I think if you can use them during treatment you should. I got a normal Pap smear about a year ago. I went for one this March and they couldn't even do one and had to get a ultra sound instead. The GYN gave me Premarin and told me to use with dilators 2x a week. So far the opening is maybe 4". I wasn't too concerned right after treatment because I had no partner. But don't wait!!! Now I have one and at first sex was ok & didn't hurt. But last time it didn't hurt either but I bled all over. So do whatever you have to do to keep your vagina open. I'm guessing since anal cancer is rare that is why there is so much confusing and differing info. One doctor says one thing and another says totally the opposite.

CharlotteW
Posts: 7
Joined: Apr 2010

I'm so glad you have an understanding husband to help you through this. I know how you feel about if it's not one thing it's something else. I'm a 61 year old who's 3 yrs out of treatment. I wish I had used the dilators earlier. No one told me about them until the damage was done. I think if you can use them during treatment you should. I got a normal Pap smear about a year ago. I went for one this March and they couldn't even do one and had to get a ultra sound instead. The GYN gave me Premarin and told me to use with dilators 2x a week. So far the opening is maybe 4". I wasn't too concerned right after treatment because I had no partner. But don't wait!!! Now I have one and at first sex was ok & didn't hurt. But last time it didn't hurt either but I bled all over. So do whatever you have to do to keep your vagina open. I'm guessing since anal cancer is rare that is why there is so much confusing and differing info. One doctor says one thing and another says totally the opposite.

lizdeli's picture
lizdeli
Posts: 520
Joined: Jul 2009

My radiologist used the "protector" during treatment. It was embarassing to say the least. But it was worth it since it saved me from damage and burns in certain areas. Anyone starting treatment should ask about this metnod. If there are questions, the doctors can contact Dr. Richard Crane at MD Anderson, head of Gastrointential Radiation. He's my hero!
Liz

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

I had a completely fused vagina and it happened within about 6-8 weeks after having a D&C about 6 months after treatment ended. The D&C was to check for any more "suspicious for cancer" cells which had been found as I started regimen for anal cancer. Fortunately, there was no evidence of problem but doc told me I might bleed a bit more than usual after the D&C because he had found a lot of adhesion. But then no one suggested use of dilators and when my husband finally was ready to try again (he has a fear of radiation), like Martha, you couldn't get a pinky in and there was no opening at all.

I have been using dilators also and made some progress though not exactly success. I would definitely get dilators and use them as soon as possible. I have rather angrily told all my doctors that this should be part of the regular protocol for women!!!!@!!! Please all women be sure to discuss this with your team of docs!

cujuja4evr
Posts: 106
Joined: Jul 2010

Well, I'm gonna have to get a dialator because when husband did a little probing down there (at my request just to see if things felt different) he said that it felt as if everything had closed up and nothing was going to fit in there. Would I need to check with my GYN? It almost sounds like it would be painful just using the dialator! I don't know if I'm looking forward to this or not. But, I have such a great husband and we have abstained from sex for almost 4 months now. He understands that I'm in recovery and he's extremely patient, but at the same time, I would want us to get back to as close to normal as possible.

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

They will get you started. I hope moving quickly will help you get better results faster!
Priscilla

cujuja4evr
Posts: 106
Joined: Jul 2010

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.

Majulie
Posts: 8
Joined: Mar 2010

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!

dasspears
Posts: 233
Joined: Feb 2009

I would go to your gyn doctor - he/she will understand the situation. Mine prescribed the premarin cream. talked to me about types of lubricants (use the silicone - it doesn't dry out) and was very supportive of me.

SueRelays
Posts: 489
Joined: Dec 2009

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 :)

cujuja4evr
Posts: 106
Joined: Jul 2010

Thanks! Good to know that I'll be normal again one day soon. Our 10th anniversary is coming up in April next year and I wanted us to do something extra special since it is our "decade" anniversary. Due to circumstances and life situations, my husband and I have not traveled or went on vacation since we've been married. I told him I want us to go all out next year! I just have to make sure that I'm ready so that everything will be perfect!! I guess if I start using the dialators now, it should get me prepared. If someone told me a year ago that I would be going through all of this, I would have told them they were crazy!!!

cmhla49
Posts: 4
Joined: Aug 2010

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.

cujuja4evr
Posts: 106
Joined: Jul 2010

My GYN had me scheduled for a PAP in September and I know that she won't even be able to get a speculum in there. The tip of my finger can't even get in there - good luck! I may have to schedule an earlier appt with her to discuss the dialator and maybe I'll have to prepare before I get the PAP. I'll ask about the premarin cream, too. Thanks!

z's picture
z
Posts: 1250
Joined: May 2009

Hi, Could you see if you could get dialators from the radiologist. They come in small, med, and large, and you have to use a lubricant with them. I was given a medium by my radiologist, and initially I used it 2 times a week. Now I have'nt been consistant, but do try to use it when I think about it. I have had a pap smear and exam, and the PA had no problem feeling my ovarys, and it wasn't painful at all. I need to use it more consistantly and this is a good reminder for me. Lori

CharlotteW
Posts: 7
Joined: Apr 2010

My oncologist gave me my set of dilators. Just wish I had gotten them sooner. Does anyone know if there is an operation if these don't work? My GYN said my vagina is fused to my colon. So don't know if using these dilators are suppose to re open my vagina or just stretch what little I have. I go back in a couple of months and so far it isn't stretching. Sue I'm glad you are back to normal.

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

Charlotte and Cujuja-
I finished treatment in early March 2008 and by mid August I had significant adhesion which the gyn opened during a D&C. He only told me I might bleed a bit more than normal - nothing about dilators or anything. By October, my vagina was "fused". In December, I discussed it again with the gyn and I got dilators in early 2009, with insurance coverage. However, we are now a year and a half in with some progress but not completely reopened. I have ultrasounds instead of PAPs because they cannot get to PAP territory. I timidly approached the question of surgery but never really pursued it. My husband and are in our late 60s- actually, I can't believe it, he turned 70 in May and I still think late 60s and he has a touch of E.D. so we may accept what we've got - which is certainly pretty good. Now my gyn is retiring. All that said, if I were younger, I am pretty sure I might have sued! And would certainly pursue surgery if dilators don't fix the problem.

I really really think dilators should be part of the protocol for women who have pelvic radiation. Nuf said.
Priscilla

CharlotteW
Posts: 7
Joined: Apr 2010

My oncologist gave me my set of dilators. Just wish I had gotten them sooner. Does anyone know if there is an operation if these don't work? My GYN said my vagina is fused to my colon. So don't know if using these dilators are suppose to re open my vagina or just stretch what little I have. I go back in a couple of months and so far it isn't stretching. Sue I'm glad you are back to normal.

ShellWell47
Posts: 8
Joined: Jun 2010

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!

cujuja4evr
Posts: 106
Joined: Jul 2010

I don't know what to say other than I'll try to be optimistic, but the more I read the more discouraged I get. I hear that things will get better, but how long from now? It seems that most people that said things have gotten much better, it was at least two years later. As far as the menopause goes, the radiation shut down my ovaries and I immediately went into menopause right after my last treatment. The hot flashes were unbearable on top of everything else I had to go through. I keep checking everyday HOPING that maybe I may have been imagining that my vaginal opening was much smaller than I remembered it. It was closed down so tight that I think there may have been a sign posted on the outside saying "CLOSED TEMPORARILY - UNDER CONSTRUCTION". Maybe if I view it as such, I will learn patience. In a sense, the vaginal canal has to be rebuilt and reshaped. I told my husband that I'll be a virgin again! We're looking forward to "our first time." I may sound a little discouraged, but I'm not giving in that easily! I try to use humor every now and then to help me deal with things, but when the laughing stops, the tears come. Thanks for your encouragement. Even though, the truth may sometimes hurt, I'd rather people be honest and straight forward with me so that I don't get any false hopes. I really like what you said: "Embrace the changes for what they are today..." You're absolutely right! Thanks!

Majulie
Posts: 8
Joined: Mar 2010

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!

susan1069
Posts: 30
Joined: Mar 2010

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. :)

cujuja4evr
Posts: 106
Joined: Jul 2010

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!

ACW189
Posts: 24
Joined: Feb 2009

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
Posts: 106
Joined: Jul 2010

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!)

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

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

cujuja4evr
Posts: 106
Joined: Jul 2010

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!

susan1069
Posts: 30
Joined: Mar 2010

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.

cujuja4evr
Posts: 106
Joined: Jul 2010

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
Posts: 467
Joined: Jan 2009

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.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network