Dilator problems after vaginal cuff radiation

Michaelynn
Michaelynn Member Posts: 85 Member
edited March 2014 in Uterine/Endometrial Cancer #1
I had 3 vaginal cuff radiation treatments and then was given the dilator to break up scar tissue. I am not sure if I am doing it right or how many times a week to do it or for how long at a time. I have a very dry vagina canal and can not use the hormone cream. So my questions are:

1. How many days a week should I be using it?

2. How many minutes at a time?

3. How can i tell if its actually at the vaginal cuff?

4. Sometimes it gets stuck when I try to remove it even though I use the lube they gave me and lots of it.

5. I know your suppose to turn it clockwise but that doesn't seem to help with stretching it out any.

6. Do I have to use it forever or does there came a time where scar tissue stops building up?

I have not had a vaginal exam since May sometime just saw the radiologist but he did not do one and will see the Oncologist on October 13 so not sure if he will do one then or not. I sure would like to know whats going on in there as far as scar tissue. And my husband is complaining he can't get his penis all the way in anymore and that it doesn't feel right to him. Although I can say it doesn't hurt anymore now then it did before I had the cancer and surgery. can anyone help me understand this better?

Lynn

Comments

  • jazzy1
    jazzy1 Member Posts: 1,379
    #2
    Dilator
    Lynn,

    I only had the external pelvic radiation (33) and was given the dilator to use once or twice per week. Now if I have intercourse once per week, the dilator isn't needed. I wasn't given any cream just purchased some on my own and don't have issues inserting or taking out. I was told to use for 10 minutes each time, and rotate clockwise and counter clockwise.

    Yesterday had my 1 yr appt with oncologist (radiation) and we went over the same subject about dilator. Told me if intercourse is painful, to keep trying as that area will loosen up, but must be careful as can tear the skin. Asked him if should use for the rest of my life...he didn't think so, just for now until that area is full secure and not having issues with closure.

    If it doesn't hurt, that's a good sign I'd think. How long ago did you have your cuff radiation? I completed my radiation May '09.

    I know you'll get some great information from a few others on this site, or feel free to hit the search area above.

    Best to you!
    Jan
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #3
    It's unforgivable that they give you a dilator & no instructions
    It really sounds like they gave you a dilator that's too big for you. They come in sizes. I would call my radiation oncology nurse and tell her that the dilator they gave you is too big and that you need to go down 1 size. You should be able to easily insert and remove a lubricated dilator, as easily as you once inserted a tampon. For instance, I can make mine pop out by contracting my muscles down there. (TMI and I apologize, but that's how easy it should be to use!) I use my dilator daily for 10 minutes, and have done that ever since I finished brachy July 2009. I look on it as a 'forever' thing. As far as wondering whether you've reached the vaginal cuff; it'll stop you like a wall from going in any further.
  • hopeful girl 1
    hopeful girl 1 Member Posts: 454
    #4
    lindaprocopio said:

    It's unforgivable that they give you a dilator & no instructions
    It really sounds like they gave you a dilator that's too big for you. They come in sizes. I would call my radiation oncology nurse and tell her that the dilator they gave you is too big and that you need to go down 1 size. You should be able to easily insert and remove a lubricated dilator, as easily as you once inserted a tampon. For instance, I can make mine pop out by contracting my muscles down there. (TMI and I apologize, but that's how easy it should be to use!) I use my dilator daily for 10 minutes, and have done that ever since I finished brachy July 2009. I look on it as a 'forever' thing. As far as wondering whether you've reached the vaginal cuff; it'll stop you like a wall from going in any further.

    more comments
    I finished my external radiation 8/20 and was not provided a dilator. I was told that is more needed for those that have internal radiation. (This seems to differ from everything I read here on the boards).

    My oncologist had given me ok for sex when I saw him on 8/31, and the same day at appointment with my radiation doc, radiation doc said no sex until after my 5th chemo to allow tissues to heal (which was just cancelled this week for low counts).

    So I am alittle confused.
  • Lisa 00
    Lisa 00 Member Posts: 134 Member
    #5
    Coconut oil
    Lynn,
    I had 2 internal radiation treatments. I have been "dry" every since radiation, etc. I have been using the over the counter lubricant and dilator. My problem has been that the lubricant does not keep things lubricated for very long and I find that things are stuck together again after a day or so. Also, unsticking things is messy, inconvenient and not comfortable at all.

    Anyway, my point is that I was mentioning this on another board and got some great advice. I was advised to use coconut oil and a vaginal syringe. I was told to put the coconut oil in a small glass container and I warm it up under warm tap water if needed. Then to draw up a cc or so of the oil and just insert it. Now that I have these two items, I've been doing this every morning for a couple of days now and am happy that things aren't sticking like they were. And things aren't as dry in general in that vicinity. I will still use the dilator a couple of days a week in order to keep the scar tissue formation at bay.

    You should probably be having a vaginal exam in October which should include the doc taking a look. I've had vaginal exams every 3 months since my treatment ended. Also, I agree with Linda. You should be offered dilators which come in different sizes.

    Lisa
  • susafina
    susafina Member Posts: 131
    #6
    Lisa 00 said:

    Coconut oil
    Lynn,
    I had 2 internal radiation treatments. I have been "dry" every since radiation, etc. I have been using the over the counter lubricant and dilator. My problem has been that the lubricant does not keep things lubricated for very long and I find that things are stuck together again after a day or so. Also, unsticking things is messy, inconvenient and not comfortable at all.

    Anyway, my point is that I was mentioning this on another board and got some great advice. I was advised to use coconut oil and a vaginal syringe. I was told to put the coconut oil in a small glass container and I warm it up under warm tap water if needed. Then to draw up a cc or so of the oil and just insert it. Now that I have these two items, I've been doing this every morning for a couple of days now and am happy that things aren't sticking like they were. And things aren't as dry in general in that vicinity. I will still use the dilator a couple of days a week in order to keep the scar tissue formation at bay.

    You should probably be having a vaginal exam in October which should include the doc taking a look. I've had vaginal exams every 3 months since my treatment ended. Also, I agree with Linda. You should be offered dilators which come in different sizes.

    Lisa

    More thoughts
    I was given a group of 4 dilators, I was told to use them at least 3 times a week for 10 minutes at a time. I was told to progress to the next size as they became comfortable and easy to insert. I was told to lubricate them well with a water soluable lubricant.
    I also was told to use a vaginal moisturizer such as replens 3 times a week. This is supposed to keep the vaginal cuff moist. My nurse said think of it as when you use lotion on your hands when they are dry. This has really helped a lot. There are quite a few moisturizers on the market and none of them contain anything harmful. I just had my first pelvic exam since treatment and there was no pain at all.Hope this helps.
    SUE
  • Songflower
    Songflower Member Posts: 608
    #7
    I think you need an exam
    Dear Lynn,

    I think you need an exam. It's not normal that your husband can't get his penis out; I think scar tissue is growing. They can clip the scar tissue out.

    I don't use the dilator anymore. I have sex once a week or so and that seems to do it. I think we are all a little different. With your problem I would advise you to see the Gyn, then start the dilator (I use medium size) You can start with small and work up. I would use it daily until this problem gets resolved.

    Diane

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