After effects of Radiation

I am 36 and was diagnosed with cervical cancer in 2002. I went through chemo, external radiation and internal radiation. My Oncologist says the radiation "shortened" my vagina therefore intercourse is painful and uncomfortable. My Radiologist says I have a lot of scar tissue but hasn't given me any hope that my sex life will ever be back to normal. Has anyone had this problem and did it EVER get any better?
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Comments

  • idbaker
    idbaker Member Posts: 5
    Paulywog,
    I also had internal and external radiation back in 1997. And I don't know if normal is possible. But better is. I was told to have intercourse 3-4 times a week or use a dilator. That will soften the vaginal area. And make it more comfortable. Did they tell you that?
  • kratzr
    kratzr Member Posts: 2
    I am 45 and just finishing my external/internal treatments. They have told me about vaginal scarring and shortening and that I would either have to have lots.... of sex or use a dialator for the rest of my life. It scares me to know the outcome of the effects. I only know that the internal treatments were very painful and degrading.
  • GraphicQueen
    GraphicQueen Member Posts: 1
    kratzr said:

    I am 45 and just finishing my external/internal treatments. They have told me about vaginal scarring and shortening and that I would either have to have lots.... of sex or use a dialator for the rest of my life. It scares me to know the outcome of the effects. I only know that the internal treatments were very painful and degrading.

    I am 52, soon to be 53, and I went through my treatments back in January of 2001. To be honest I don't have sex anymore and yes my vagina has all but dried up and quite small anymore. So far I am still clean but I also found the internal treatment to be quite embarrassing. I have trouble with my legs in that I have trouble lifting them as high as I used to. I have to go up steps just like a chile, one at a time. I also gained a lot of weight after the treatments, though I was already an overweight person. My husband has been with me through the whole ordeal and has been wonderful. I also have excema (sp?) and that seems to be the worse thing I have from the treatments. I hate it and it drives me nuts. Does anyone else have this sort of problem from their treatments?
  • beth20anne
    beth20anne Member Posts: 2
    idbaker said:

    Paulywog,
    I also had internal and external radiation back in 1997. And I don't know if normal is possible. But better is. I was told to have intercourse 3-4 times a week or use a dilator. That will soften the vaginal area. And make it more comfortable. Did they tell you that?

    hi. i am 25 yrs old and was diagnosed with cervical cancer in june of 2003. i had undergone a radical hysterectomy, chemo (5 weeks), external radiation(31sessions), and internal radition(3sessions). immediately following my treatment my dr gave me a dilator(bc i am single) to use daily basically for the rest of my life. i am told that this process along with having intercourse would help to prevent the shortening of the vagina. i believe that the shortening and discomfort will/should subside but it will take atleast a year or two in order to get it back..i dont think "normal" is in the future! but we sall see...at this point we are all cancer survivors and we should shoot beyond normal..after all i think we deserve that!
  • JayC13
    JayC13 Member Posts: 1
    My wife had cervical cancer a few years ago (she was 27) and had external/internal radiation. She had the same problems of the shrinkage and shortening. Over time it does get better (it will expand a bit), however the dryness and scar tissue will persist. There are some good lubricants to help w/ dryness which will make things more comfortable. You can use a product called Astroglide for intercourse and also REPLENS for regular day-to-day moistening. You will have to be patient as it will take some time to heal. You can also use the dialator to help expand. I hope this helps you.
  • tlinn
    tlinn Member Posts: 8
    Hi my name is Terri, I went through chemo, radiation, and radiation implants in 1999. As far as your sex life going back to normal I don't think it will ever be the same. I used to enjoy sex now I don't it's pretty much a chore for me I have to force myself to do it. Thank god I have a very patient man. But it is true the more you use it the less pain you will have. I am pretty much pain free. Like my doctor told me you need to use it or you will lose it. If you have any other questions my personal email is [email protected]
  • grannyfranny
    grannyfranny Member Posts: 42
    JayC13's reply agrees with my experience. For me, the problem was narrowing, not shortening, and it had actually started before my cancer diagnosis. I couldn't figure out why sex had become painful, but that was it. Fortunately, my radiation oncologist gave me two sizes of dilators BEFORE I started radiation. (She said to get a lubricant that didn't smell like what they use in the office, or that would be a turnoff, too!)

    I think that using the dilators from the beginning helped make the high-dose (AKA "internal") treatments more comfortable. Only the first was actually painful; after that I took a pain pill in advance.
  • tiny one
    tiny one Member Posts: 465
    I have vaginal shortening
    I have vaginal shortening from radiation and thickening in the rectal area. I am 50 and don't tolerate a dialator very well. I have frequent bathroom issues from an ileostomy reversal. Will I ever go back to normal? I'm angry and want the old me back not the joke of what I have now.
  • tiny one
    tiny one Member Posts: 465

    I am 52, soon to be 53, and I went through my treatments back in January of 2001. To be honest I don't have sex anymore and yes my vagina has all but dried up and quite small anymore. So far I am still clean but I also found the internal treatment to be quite embarrassing. I have trouble with my legs in that I have trouble lifting them as high as I used to. I have to go up steps just like a chile, one at a time. I also gained a lot of weight after the treatments, though I was already an overweight person. My husband has been with me through the whole ordeal and has been wonderful. I also have excema (sp?) and that seems to be the worse thing I have from the treatments. I hate it and it drives me nuts. Does anyone else have this sort of problem from their treatments?

    I have vaginal shortening
    I have vaginal shortening sex is not pleasant due to this and requent bathroom issues. I wish that I would have never had the radiation. This is a hell that I live in everyday when I just want the old me back. I wasn't told enough before I made this decision to take this treatment.
  • jsyorkies
    jsyorkies Member Posts: 6
    tiny one said:

    I have vaginal shortening
    I have vaginal shortening from radiation and thickening in the rectal area. I am 50 and don't tolerate a dialator very well. I have frequent bathroom issues from an ileostomy reversal. Will I ever go back to normal? I'm angry and want the old me back not the joke of what I have now.

    Vaginal shortening
    Hi, I had a radical hys and upper vagina removed and reconstructed and 28 external Radiation treatments 17 years ago, I am now almost 48 :)I was told also you either use it or lose it ! I know that it is not always a good feeling and with me it is mind over matter. Just hang in there and practice practice practice it does get better :) Just think some women pay for this :) Hugs Shawn in Iowa
  • colleens
    colleens Member Posts: 8
    Radiation Scarring
    Hi Everyone,

    Just new here and have been struggling with the outcome of last week's visit to my GP. I am 6 years cancer-free now - yeah! But I have had terrible pain during intercourse all along. I went to my GP looking for a solution - thought maybe it was all in my head and perhaps vaginismus (when you involuntarily contract your muscles to shut the vagina). My doctors at the cancer clinic gave me no options. My GP told me that my vagina had shortened and narrowed. There was scar tissue at the top, but it otherwise looked healthy. She said it was very rigid though and was not able to open the speculum very far (sorry for the gorey details). She thinks that there is scarring on the other side of the vagina wall and has referred me to a gynacologist. My GP's thought was to try a pelvic laporoscopy to see the extent of the scarring and thought perhaps they could remove some of the scar tissue outside of the vagina which might make my vagina less rigid. She told my husband and I not to even try intercourse anymore - I can't stretch. She also mentioned there may be some reconstructive surgery that they could do - flat out the dilator will not work for me as she could not force the speculum to open.

    Has anyone explored vaginal reconstructive surgery as an option or know anything about it? I am feeling like an incomplete woman now that I have been told that intercourse is no longer possible for me. I found out two years ago that my husband had turned to escort agencies instead of trying sex with me because "he didn't want to hurt me". It's been a real tough two years coming back from that, but we are getting along really well right now. He took the news on no intercouse much better than I thought, but I am angry about it and feel like a real loser (I am 40 yrs old). Although our marriage is in a good place now, I can't help but worry that he will turn to someone else again. How have you ladies been coping with the emotional side of things?

    Any help or advice would be so appreciated.

    Colleen
  • jsyorkies
    jsyorkies Member Posts: 6
    colleens said:

    Radiation Scarring
    Hi Everyone,

    Just new here and have been struggling with the outcome of last week's visit to my GP. I am 6 years cancer-free now - yeah! But I have had terrible pain during intercourse all along. I went to my GP looking for a solution - thought maybe it was all in my head and perhaps vaginismus (when you involuntarily contract your muscles to shut the vagina). My doctors at the cancer clinic gave me no options. My GP told me that my vagina had shortened and narrowed. There was scar tissue at the top, but it otherwise looked healthy. She said it was very rigid though and was not able to open the speculum very far (sorry for the gorey details). She thinks that there is scarring on the other side of the vagina wall and has referred me to a gynacologist. My GP's thought was to try a pelvic laporoscopy to see the extent of the scarring and thought perhaps they could remove some of the scar tissue outside of the vagina which might make my vagina less rigid. She told my husband and I not to even try intercourse anymore - I can't stretch. She also mentioned there may be some reconstructive surgery that they could do - flat out the dilator will not work for me as she could not force the speculum to open.

    Has anyone explored vaginal reconstructive surgery as an option or know anything about it? I am feeling like an incomplete woman now that I have been told that intercourse is no longer possible for me. I found out two years ago that my husband had turned to escort agencies instead of trying sex with me because "he didn't want to hurt me". It's been a real tough two years coming back from that, but we are getting along really well right now. He took the news on no intercouse much better than I thought, but I am angry about it and feel like a real loser (I am 40 yrs old). Although our marriage is in a good place now, I can't help but worry that he will turn to someone else again. How have you ladies been coping with the emotional side of things?

    Any help or advice would be so appreciated.

    Colleen

    Hi Colleen
    I was very lucky when I had my surgury to be at the mayo clinic and have a Dr that cared that I was only 30 at the time ! He reconstructed my vagina at that time and I had a husband that enjoyed sex. And you are not incomplete this is only one part of us to love ! And I am sorry about your husband seeking it else where but that is not your fault that is all on him. There are many ways to have intimate relations with out intercourse ( geez I sound like Clinton LOL !) But anyway I would check into having it reconstructed but do it for you and for the right reasons :) And YEAH you are 6 years Cancer FREE !!!! That is an awesome milestone ! I was still so scared at 6 years I forgot to live and now I regret it :( And as far as coping I would not have been a good one to ask back then I coped with meds and a lot of wasted years. But now I know you have to live for yourself and do what makes you happy and don't worry about your husband going else where that has nothing to do with you! If I can help in any way please email me :) Hugs from Shawn in Iowa ~ [email protected] Just remember you are Cancer Free !!
  • colleens
    colleens Member Posts: 8
    Thank you Shawn!
    Hi Shawn,

    I want to thank you so very much for responding so quickly. I really didn't expect to hear from anyone, let alone so soon, so I can't tell you how uplifting that feels.

    I am so happy you received such amazing care. I am from Vancouver Canada and have heard so many fabulous things about the mayo clinic. I'm glad you were able to seek the help you needed, especially since you were so young.

    I would love to ask you a few questions about reconstructive surgery and advice on how to find a good doctor and what questions to ask. And I appreciate you saying all of the kind words about doing it for me, not him. You are right. And yes, we should celebrate our survival. I just got to kiss my little girl goodnight and tell her how much I love her. She had just turned two when I was diagnosed with stage 2B that had spread to the lymph nodes and the tumour was the size of a grapefruit. Had things gone the other way, she may not have remembered how much her mommy loves her - so I think of that often - how lucky I am to be here for her. And my motto has been "live life large" since I finished treatment. The greatest gift I was given when going through treatment and not knowing whether I would survive or not - was that I had no regrets. So I make life decisions based on having no regrets and I think it is so important. We live like tomorrow may be our last day and apart from worrying before test results or appointments, I don't worry about having had cancer and it coming back. And I try to make surviving count by helping others any way I can. So Shawn - you are my angel tonight and I can't thank you enough for reaching out to me. I would love to e-mail you and just ask a few simple questions about finding a doctor to help me through this.

    Big hugs and congratulations on surviving so long - good for you!!! You are an inspiration to us all.

    Take care,

    Colleen
  • jsyorkies
    jsyorkies Member Posts: 6
    colleens said:

    Thank you Shawn!
    Hi Shawn,

    I want to thank you so very much for responding so quickly. I really didn't expect to hear from anyone, let alone so soon, so I can't tell you how uplifting that feels.

    I am so happy you received such amazing care. I am from Vancouver Canada and have heard so many fabulous things about the mayo clinic. I'm glad you were able to seek the help you needed, especially since you were so young.

    I would love to ask you a few questions about reconstructive surgery and advice on how to find a good doctor and what questions to ask. And I appreciate you saying all of the kind words about doing it for me, not him. You are right. And yes, we should celebrate our survival. I just got to kiss my little girl goodnight and tell her how much I love her. She had just turned two when I was diagnosed with stage 2B that had spread to the lymph nodes and the tumour was the size of a grapefruit. Had things gone the other way, she may not have remembered how much her mommy loves her - so I think of that often - how lucky I am to be here for her. And my motto has been "live life large" since I finished treatment. The greatest gift I was given when going through treatment and not knowing whether I would survive or not - was that I had no regrets. So I make life decisions based on having no regrets and I think it is so important. We live like tomorrow may be our last day and apart from worrying before test results or appointments, I don't worry about having had cancer and it coming back. And I try to make surviving count by helping others any way I can. So Shawn - you are my angel tonight and I can't thank you enough for reaching out to me. I would love to e-mail you and just ask a few simple questions about finding a doctor to help me through this.

    Big hugs and congratulations on surviving so long - good for you!!! You are an inspiration to us all.

    Take care,

    Colleen

    Thank you Colleen :)
    Thank you :) Aww and I am so happy you get to tuck your little girl in to bed! My youngest was also 2 when I found out WOW she is now 19 with a baby of he own :) I also had a 4,6,8,13 and your right that is all I prayed for was to see them grow up :) Now I pray to see their kids grow up ! Grandkids are awesome ~ Are you close to a Mayo Clinic ? Or a good plastic surg? I know the scar tissue sucks ! I have more issues with the scar tissue from Rad and the surg and I suspose the Chemo also on my insides bladder has thicking all kinds of aches and pains LOL ! But at least now after joining this site I know it's not all in my head ! You will have to check out my website and see my grandbabies and yorkies:) yorkiesjs.com I show and breed but I am not sending you there to buy a Yorkie LOL ! Just it is nice to put a face with a name:) Well I'd better get to bed ~ You have a nice night and dream happy things ~ Hugs from Iowa ~ And I am glad I have you to talk to also :) Shawn
  • colleens
    colleens Member Posts: 8
    Hi Shawn
    Hi Shawn - I sent you an e-mail FYI. Thank you for reaching out to me - I don't feel so alone right now and that is such a huge relief. Love to know how I may be able to help you too.

    Colleen
  • jsyorkies
    jsyorkies Member Posts: 6
    colleens said:

    Hi Shawn
    Hi Shawn - I sent you an e-mail FYI. Thank you for reaching out to me - I don't feel so alone right now and that is such a huge relief. Love to know how I may be able to help you too.

    Colleen

    Hi Colleen :)
    Thank you ~ I didn't see your email ? Hmmmm you never know about this cyber space lol ! Did you send it to email at [email protected] Maybe I miss typed it last time I was getting tired :) Hope things are going well for you in the last couple days. I am doing some research also on what is a good way to go for reconstructive enhancement (sounds like a good word for it :) Goodnight ~ Shawn
  • colleens
    colleens Member Posts: 8
    Hi Tiny One
    Sorry, I don't know your real name so I'll respond to you this way for now. How are you feeling today? You sounded pretty frustrated the other day and totally understandable. I'd like to help if I could, even if it is just to lend an ear - or a virtual hug. You've fought the battle of all battles and lived to tell of it, so take one moment to feel proud of yourself - it wasn't easy I'm sure. Now back to bitching - I understand the frustration of wanting the old you back - me too! And I'm trying - just hit a big roadblock last week. But I'm not ready to give up yet.

    I don't know details about the procedure you had that is causing you bathroom problems, but sure understand those frustrations. Send a message back if you'd like to vent or ask any questions. I'm 40 now (this all started 6 yrs ago) and I feel like an elderly person as far as making sure I'm near a bathroom whenever possible "just in case" and even often wearing Poise pads "just in case" when I'm out - how sexy is that?! It's degrading and embarassing. My daughter is 8 and I avoid the long fieldtrips on school buses and don't dare tell the other parents or her teacher that I fear going on them because when I have to go, either one, there is sometimes NO warning. So I go on all of her other field trips where I can drive and be in control. If I need to stop at a gas station on the way, well, at least I have the option. It's very frustrating and frankly limits some of the activities I'm comfortable doing, like hiking in the woods. We go boating to some beautiful remote islands with friends who like to go on long hikes, and I'm so afraid of getting a massive diarrhea attack that I make stupid excuses not to go with them on the hike. It's embarrassing and frustrating because I love to explore. Anyone else going through that? Has anyone found any medication or anything to regulate when their system is going to act up out of the blue?

    As in my previous message, I have vaginal shortening and narrowing too, but now my GP has told me it's rigid and will not stretch. Can you at least stretch the walls (so personal - sorry you don't have to answer that - just trying to help). I hated the dilators too. I had NO idea going into all this that my sex life would be affected so dramatically. I am grateful to be here to **** about it of course, but it feels like a tremendous burdon. All these years I thought the painful intercouse was partly in my head because I had such a horrible brachytherapy experience - long story, but it was put in by an intern and I can't begin to describe the agony I went through when 5 nurses couldn't "yank" it out at full force. Horrible horrible experience. That's mainly why I've thought for years that intercourse was painful. I'm sure they did some damage in there and I always thought I tensed up every time my husband came near me because of that experience. More to that story but I don't want to drag this on - I know you ladies are busy and I apologize that my first few messages have been long. And look, this one is too. Sorry. Let me know if I need to keep these shorter.

    Anyway, tell me more about your situation and if I can help in any way, even just listening, I'd be happy to help you.

    Big hugs from Colleen in Vancouver Canada.
  • colleens
    colleens Member Posts: 8
    colleens said:

    Hi Tiny One
    Sorry, I don't know your real name so I'll respond to you this way for now. How are you feeling today? You sounded pretty frustrated the other day and totally understandable. I'd like to help if I could, even if it is just to lend an ear - or a virtual hug. You've fought the battle of all battles and lived to tell of it, so take one moment to feel proud of yourself - it wasn't easy I'm sure. Now back to bitching - I understand the frustration of wanting the old you back - me too! And I'm trying - just hit a big roadblock last week. But I'm not ready to give up yet.

    I don't know details about the procedure you had that is causing you bathroom problems, but sure understand those frustrations. Send a message back if you'd like to vent or ask any questions. I'm 40 now (this all started 6 yrs ago) and I feel like an elderly person as far as making sure I'm near a bathroom whenever possible "just in case" and even often wearing Poise pads "just in case" when I'm out - how sexy is that?! It's degrading and embarassing. My daughter is 8 and I avoid the long fieldtrips on school buses and don't dare tell the other parents or her teacher that I fear going on them because when I have to go, either one, there is sometimes NO warning. So I go on all of her other field trips where I can drive and be in control. If I need to stop at a gas station on the way, well, at least I have the option. It's very frustrating and frankly limits some of the activities I'm comfortable doing, like hiking in the woods. We go boating to some beautiful remote islands with friends who like to go on long hikes, and I'm so afraid of getting a massive diarrhea attack that I make stupid excuses not to go with them on the hike. It's embarrassing and frustrating because I love to explore. Anyone else going through that? Has anyone found any medication or anything to regulate when their system is going to act up out of the blue?

    As in my previous message, I have vaginal shortening and narrowing too, but now my GP has told me it's rigid and will not stretch. Can you at least stretch the walls (so personal - sorry you don't have to answer that - just trying to help). I hated the dilators too. I had NO idea going into all this that my sex life would be affected so dramatically. I am grateful to be here to **** about it of course, but it feels like a tremendous burdon. All these years I thought the painful intercouse was partly in my head because I had such a horrible brachytherapy experience - long story, but it was put in by an intern and I can't begin to describe the agony I went through when 5 nurses couldn't "yank" it out at full force. Horrible horrible experience. That's mainly why I've thought for years that intercourse was painful. I'm sure they did some damage in there and I always thought I tensed up every time my husband came near me because of that experience. More to that story but I don't want to drag this on - I know you ladies are busy and I apologize that my first few messages have been long. And look, this one is too. Sorry. Let me know if I need to keep these shorter.

    Anyway, tell me more about your situation and if I can help in any way, even just listening, I'd be happy to help you.

    Big hugs from Colleen in Vancouver Canada.

    Oh My!
    I just saw my last comment posted and wondered at first why the asteriks were there - then I realized that my word that starts with a b and rhymes with witch was replaced with these symbols. And then I saw the option at the bottom of the messages to advise if they were offensive. I am giggling right now, LOL! New to all this so I hope I haven't offended any of you. Hee hee - oh there's the rebel in me! I guess it's good to keep it clean since it's a public forum. Please forgive my cyber-virginity, as opposed to my now post radiation "born again" virginity, of which I will now keep my non-lady-like verbage to myself! Again,sorry if I offended anyone, otherwise, I thankfully got a good chuckle after a very serious topic.

    Colleen
  • colleens
    colleens Member Posts: 8
    jsyorkies said:

    Hi Colleen :)
    Thank you ~ I didn't see your email ? Hmmmm you never know about this cyber space lol ! Did you send it to email at [email protected] Maybe I miss typed it last time I was getting tired :) Hope things are going well for you in the last couple days. I am doing some research also on what is a good way to go for reconstructive enhancement (sounds like a good word for it :) Goodnight ~ Shawn

    Hi Shawn
    OK, silly me, I wrote down your e-mail wrong - sorry. I put the .com extension instead of .net So I'll send it again - glad I thought to post a heads-up on here.

    Oh, and hey, I looked at your website again today and clicked beyond the opening page and found the photos of your grandchildren. They are sooooo beautiful and they are so lucky to have you as a Grandma. I can tell already how loving you are and fun for them to be with. Enjoy them!!! Your Yorkies are gorgeous and you have a great website. I've got a marketing/advetising background and your message/branding is excellent. I'd certainly come and see you if I was in the market for another dog.

    You mentioned some scarring trouble still - what are you experiencing? I hope nothing too uncomfortable. Would love to be a sounding board for you.

    Take care, and big hugs from Vancouver

    Colleen
  • lp45
    lp45 Member Posts: 2
    vaginal dry up
    I have surfed the life of cervical cancer since the 80's, I was 26 when I started this long road. Yes intercourse is painful and dreaded after the first bought with cervical cancer. My doctor did not offer a dilator, he just said do it more often and use lubricants. My husband loved that. Well then it came back again. This time I went through more treatments and had more pelvic scar tissue. Now intercourse was very painful and led to bleeding every time. I battled this till 2005 when it came back. Only treatment, pelvic surgery that left me a unable to have intercourse. My husband left me for another women and he is the one that gave me the HPV. He was & is the only man I have ever had sex with.
    Ask your doctors questions, do not be afraid, another good source of help is the nurse.
    But, yes life can become lonely if you allow it. If intercourse makes up a relationship, then it will not last. We need to look at the person and love them no matter what the problem may be. Stay positive, try even when you want to just want to give up.
    You are not alone.