vigina problems

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  • Forherself
    Forherself Member Posts: 969 Member
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    The uterine cancer discussion board

    has lots of information about vaginal stenosis.   You can search for that or dilators.  There are many who have used them.  I am surprised that the doctors don't routinely offer the dilators.

  • Calliope43
    Calliope43 Member Posts: 2
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    stenosis

    I'm 45 and almost 2 years post treatment. My radiation oncologist made it seem like vaginal stenosis was not going to happen. He said to keep having regular sex and I would be fine. As we all know "regular" sex is not possible at a certain point in the treatment because of the pain. And as I suspected... vaginal stenosis. I'm finally able to have sex without terrible pain but thats all dependent on my hormones and what time of the month it is. I can't use tampons because my vaginal canal is misshapped and removing them is the worst pain possible. I wish the doctors would consider the effects of radiation better with us women.

  • eves0411
    eves0411 Member Posts: 14 Member
    edited January 2020 #24
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    Vaginal Stenosis

    Hi everyone-

    Just started radiation last week. None of my doctors have mentioned the issues I'm reading on the board. I am receiving a total of 6 weeks radiation in combination with two treatments of 5FU (first one done). How long did you all receive radiation and when did these symptoms begin?  Thank you so much!

  • eihtak
    eihtak Member Posts: 1,473 Member
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    eves0411 said:

    Vaginal Stenosis

    Hi everyone-

    Just started radiation last week. None of my doctors have mentioned the issues I'm reading on the board. I am receiving a total of 6 weeks radiation in combination with two treatments of 5FU (first one done). How long did you all receive radiation and when did these symptoms begin?  Thank you so much!

    eves0411...

    Hi,

    It sounds like you are receiving the protocal treatment that most of us have. There are often some minor variations due to individual circumstances or even doctors locations. I was not told anything about many of the long term side effects nor the use of dilators to aid with stenosis, until I read something here a year after treatment. At that time I ordered a set of graduated size dilators from a company on line (I will need to search for that info if wanted) Anyhow, I did have some stenosis but was able to comfortably use the dilators even a year post treatment starting with the small size and moving up over time. I'll admit, I slacked off a lot and for periods just gave up because it didn't really matter to me. When I have a pap test I still ask them to use a small or even pediatric speculum as its just more comfortable (if that even is a comfortable thing, lol) 

    I don't know why this is not a part of standard care, but it seems that across the board there is a real lack of discussion on potential side effects and how to manage them...another reason this site is such an important place for us all!

    katheryn 

  • annie4145
    annie4145 Member Posts: 218 Member
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    eves0411 said:

    Vaginal Stenosis

    Hi everyone-

    Just started radiation last week. None of my doctors have mentioned the issues I'm reading on the board. I am receiving a total of 6 weeks radiation in combination with two treatments of 5FU (first one done). How long did you all receive radiation and when did these symptoms begin?  Thank you so much!

    My doctor suggested treating

    My doctor suggested treating with the dialators after completiono of treatment.  I don't recall whether it was 4 or 6 weeks after, but I was able to do that.   I don't think that you have to worry about this during treatment.  It was tight when I began, but was able to respond to the therapy.  Get through the next 5 weeks or so, and then you can worry about it after you finish. 

  • Teaberryrun
    Teaberryrun Member Posts: 3 Member
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    No one told me about vaginal stenosis either. I discovered it the possible problem while looking for information during treatment and had to ask. I was always searching on line even though it probably wasn't a healthy thing to do. I am approaching year 2 and doing well but still struggle with fatigue and endurance when exercising. I worked with a dilator set for a while but kind of gave up. I'm not encouraged by seeing that it may be a life long "project". Ugh. I never expected to have so much anxiety afterwards either. Now that I have less frequent check-ups I am able to put the thoughts aside more. Being otherwise healthy and T2N0M0 I do feel pretty lucky.