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After effects of Radiation

Paulywog
Posts: 1
Joined: Jan 2004

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?

idbaker's picture
idbaker
Posts: 5
Joined: Jan 2004

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?

beth20anne
Posts: 2
Joined: Feb 2004

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!

kratzr
Posts: 2
Joined: Jan 2004

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
Posts: 1
Joined: Feb 2004

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?

tiny one
Posts: 467
Joined: Jan 2009

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.

JayC13
Posts: 1
Joined: Feb 2004

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's picture
tlinn
Posts: 8
Joined: Apr 2002

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 maddiecam@hotmail.com

grannyfranny
Posts: 42
Joined: Jan 2004

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
Posts: 467
Joined: Jan 2009

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.

jsyorkies
Posts: 6
Joined: Jan 2009

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
Posts: 8
Joined: Jan 2009

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
Posts: 6
Joined: Jan 2009

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 ~ sdeer@iowatelecom.net Just remember you are Cancer Free !!

colleens
Posts: 8
Joined: Jan 2009

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
Posts: 6
Joined: Jan 2009

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
Posts: 8
Joined: Jan 2009

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
Posts: 6
Joined: Jan 2009

Thank you ~ I didn't see your email ? Hmmmm you never know about this cyber space lol ! Did you send it to email at sdeer@iowatelecom.net 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
Posts: 8
Joined: Jan 2009

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

colleens
Posts: 8
Joined: Jan 2009

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 *****ing - 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
Posts: 8
Joined: Jan 2009

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

tiny one
Posts: 467
Joined: Jan 2009

Hi Colleen: My vaginal shortening is due to radiation treatments for colon cancer. I had a resection and a temporary ileostomy, after 10 months they took the bag off. That's where my bathroom issues come from. I still have these issues. I stop using the dialator after a few days because I'm so scared of becoming sore vaginally. I have soreness rectally every day, but lomotil helps with that. I feel like there should be some treatment or solution to restore this area. The bathroom issue and the vaginal issue are the only badside effect that I've had from my treatment. I feel for anyone else who has this problem also.

lp45
Posts: 2
Joined: Jun 2007

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.

colleens
Posts: 8
Joined: Jan 2009

You are an amazing woman to have survived cancer 3 times and to have gone through the struggles with your husband. I am so sorry he did not stand behind you and he should have seen your strength and determination as a blessing. He will lose out in the long run. I'd say hang in there, but you clearly are an expert at that. I'm sorry it's been such a challenging road for you, especially getting cancer so young. Any words of wisdom would greatly be appreciated as you sure have earned your stripes.

I hope your life is full of family and friends that truly appreciate you. I'd love to hear more about your story when you have time.

Take care and big hugs from Vancouver,

Colleen

colleens
Posts: 8
Joined: Jan 2009

Hi Shawn,

I just wanted to check in - I sent you an e-mail last week and since I sent the first one to the wrong address, I thought I'd check if you received it. Hope you are doing OK. Look forward to hearing from you when you get the chance.

Take care,

Colleen

shanaladee
Posts: 3
Joined: Apr 2004

After reading all this, I knew I had to respond.

I am 42 years old and in 1998, I was diagnosed with cervical cancer. They did a hysterectomy and found out that the cancer had spread to my lymph nodes. I had to go through radiation; 35 treatments along with radiated rods and radiated seeds inserted into my vagina and rectum
:-/.

My vagina did shrink and shorten. I was told to use a dilator also or have sex as often as I can. Well, I didn't use the dilator and opted for the sex route since I am married. I am like everyone else; sometimes I have problems with bleeding during intercourse and sometimes it can be painful. I found that changing sexual positions and being creative in the bedroom helps. I use Replens or KY on a daily basis and the doctor has given me Estrogen in a tube to use in my vagina(a small dime size amount once every other week). This does help tremendously.

I am very lucky in that I have a wonderful understanding husband that constantly makes me feel like I am the only one he notices and is willing to do whatever is necessary for me to feel better.

Because of the radiation, I have problems with my bladder and my rectum/colon. I have had kidney cancer in 2004 and had a full nephrectomy. I had to go to three different doctors before one finally found it. Persistence pays off. I have been diagnosed as having Radiated induced Cystitis which means that my bladder inflames and causes LOTS of pain and some blood when I urinate, much like having a bladder infection. I may also have radiated induced colitis or something along those lines: I will be going in a couple of weeks to get a colonoscopy to have it all checked out but I noticed alot of inflamation around my rectum. It always seems that these problems seem to go hand in hand.

What has been helping me with my stomach, bowels, colon, rectum and bladder issues is to make sure that I keep regular. I eat lots of Activia yogurt, I take probiotics and I follow a Low Oxalate Diet. I also try to keep hydrated. It's not always easy but when I am being good and following all this, I feel better and I almost feel normal. When I don't follow all this, then I begin to have problems all over again.

I have had to go to a few doctors before finding the ones that I have now who seem to know and understand these issues. Within these post radiation years, I have been to some stupid doctors that generalized my issues as having IBS, nerves, etc..etc...etc..
Great doctors and persistence on my part has made a difference. I am constantly reading up and researching what I can.

It seems that when I am ok in the other areas (bladder, stomach, colon and rectum) then I have no pain and no discomfort during intercourse. Don't get me wrong, I am not healed and somedays things aren't great but they are much better and I am much happier.

Hopefully all this will help someone else. If anyone has questions, please email at shanaladee@gmail.com. I don't always check my emails right away but I will write back.

Dee

stillbreathing2
Posts: 1
Joined: Jun 2009

Thanks Dee, I found all this most helpful. I'm a 4 year survivor of stage IV endometrial cancer. I had a hysterectomy, radiation and chemo within a few short months in 2005. I'm happy and blessed to be alive but struggling to cope with painful sex and a husband who is tired of doing "without". I have a shortened and narrowed vaginal cuff. Sex makes me bleed. I also had a pink color in my urine for 2 days following our last attempt. My husband is actively trying to find a "girlfriend". I'm 57 and he's 46. We had an active and happy sex life before my illness. I've tried dilators but got a UTI and took a break. I need to get started again but I'm discouraged and depressed. My search for a doctor who can understand goes on...I'm so sick of this whole situation.

Thanks for the info,
stillbreathing2

funbeadgirl
Posts: 174
Joined: Jan 2009

Hi Ladies,

I can identify with you all regarding the vaginal issues with radiation. I do believe everyone will respond differently, and the type of radiation one has also makes a difference.
I was diagnosed with vulvar adenocarcinoma, it was stage 3, so after my surgery I had 28 treatments of external radiation in entire pelvic area. I too experienced issues in the vagina. First of all, I think KY jelly is the wrong thing to use, since it is alcohol based, which will dry out tissues even more. My doctor told me to use a product called Liquid Silk, it is silicone based, it is wonderful. You can order it online at drugstore.com.I also am using a bio hormone gel vaginally at nighttime. I also use dilator every other night, and before intercourse. I have only attempted intercourse 3 times, since I recently finished radiation, but I want to take care of this issue because I don't want to wind up with recurring infections or painful pelvic exams. Sex is not the end all of my relationship with my husband, but I also am not ready to throw in the towel. I don't think these issues are addressed readily by doctors, especially if they are male, but I found a women's health specialist that deals with women after cancer treatment and menopause, which I also am going through instantly because of the radiation...fun, right?!
Don't give up, there is hope out there for us, but please look into the Liquid Silk instead of the KY jelly. Hang in there.

Janabeth
Posts: 5
Joined: Jun 2010

I had endometrial cancer and had external and internal radiation along with chemotherapy. What is still a constant source of distress to me is the that fact that the doctors minimized what would happen. "A little shorter." "A little drier." Neither the gynecologic oncologist nor the radiologist said: 1. loss of libido is the rule, not the exception; 2. a majority of endometrial patients do not have intercourse again; 3. you don't feel arousal again (there aren't enough patent blood vessels in and around the vagina to engorge or provide lubrication); 4. diminished or absent orgasm is common. Instead the ACS says if you previously enjoyed sex, you will again. However, the studies do not support this statement. The Gynecologic Cancer Foundation talks about resuming your wonderful sex life. Again, the majority don't.
Why do doctors continue to withhold this information from women? What does informed consent really mean in this country?

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