Vaginal stenosis

JujuC
JujuC Member Posts: 2
in Anal Cancer #1

Hello! 

This seems to be a subject without a lot of discussion! I've seen only one woman who mentioned surgery for stenosis (I've messaged her...) but I wonder if anyone else has, and where. 

I am a year and 3 months out of treatment and still unable to "graduate" past the first (of 5) dilators. 

Is there anyone who had gotten help from their doctor regarding this? I'm willing to travel for hope! :) 

Cheers, Judy 

Comments

  • AmyD1310
    AmyD1310 Member Posts: 59
    edited March 2017 #2
    Judy

    Hi there!

    I am currently looking into this topic as I'm sure I wont escape this radiation side effect. I saw my gynecologist and he mentioned estrogen cream (prescription not otc) and vaginal dilators. Because I'm not quite finished treatment (2 radiation zaps to go!), he isn't recommending I do anything just yet. Have you seen your gynecologist? Others have also recommended physical therapists who specialize in pelvic floor therapy? Have you looked into this?  I am not sure I'm much help at this stage, but figured I could share what I know!

    -Amy

  • tanda
    tanda Member Posts: 174 Member
    #3
    jujuc

    I assume you are still being followed by a radiation oncologist.  You might ask the dr or one of the nurses or your gynecologist if they know any local practitioners that specialize in pelvic floor rehab.

    Where do you live and where were you being treated? Perhaps there are others on this list, that may have some suggestions.  Also, check out BlogforaCure.org--there are many a.c survivors on that list who have worked with pelvic rehab PT's; perhaps some near where you are located.

    http://www.pelvicpainrehab.com/uncategorized/545/how-do-i-find-a-pelvic-floor-pt

  • angela k
    angela k Member Posts: 7
    edited April 2017 #4
    Candid comments

    Hi. I haven't been on this board in quite a while but check every year or so to offer encouragement.  I am 6 years post treatment and doing very well.  My vaginal stenosis improved considerably after starting bioidentical hormones about 3 months post treatment.   All symptoms of menopause improved greatly as well. (After much research I would never consider synthetic hormone replacement therapy.)

    But it does take some time so don't put too much pressure on yourself.  When my doctor told me just to have a lot of sex, I was a little offended and thought he was nuts considering the condition of my burned vagina.  But actually, in retrospect, it wasn't bad advice.  Again, it takes some time and being kind to yourself.

    Six years later, I am just as good sexually as I used to be prior to treatment.  It's even better probably because I am relieved to be back to the old me and GRATEFUL.

    On another note -- I wish I would have started a consistent yoga practice during treatment to help with the stresses of having cancer in general and to help me live and appreciate 'the present.'  Restorative yoga is a beautiful thing and 6 years later  I know that my hips and pelvic region have tightened significantly -- much of it it do to radiation, I am sure.  Yoga has helped me TREMENDOUSLY in improving flexibility, etc.  So don't wait like me, START NOW.  

    And on a closing note, I am in the best shape of my life at 53 years old.  I will have my International Assoc of Yoga Therapists (IAYT) teaching certification in May with the plans to teach cancer survivors.  I just started kayaking and cycling on a weekly basis.  My point is not to 'brag' but to show survivros that ANYthing is possible after cancer.  It won't define you unless you let it.   

    With much love,

    Angela

     

  • mp327
    mp327 Member Posts: 4,440 Member
    #5
    angela k

    So good to know that you are doing well.  Thanks for posting--it gives us all lots of encouragement.  May you continue to be happy and healthy!

    Martha

  • Holly Nelson
    Holly Nelson Member Posts: 1
    edited July 2017 #6
    angela k said:

    Candid comments

    Hi. I haven't been on this board in quite a while but check every year or so to offer encouragement.  I am 6 years post treatment and doing very well.  My vaginal stenosis improved considerably after starting bioidentical hormones about 3 months post treatment.   All symptoms of menopause improved greatly as well. (After much research I would never consider synthetic hormone replacement therapy.)

    But it does take some time so don't put too much pressure on yourself.  When my doctor told me just to have a lot of sex, I was a little offended and thought he was nuts considering the condition of my burned vagina.  But actually, in retrospect, it wasn't bad advice.  Again, it takes some time and being kind to yourself.

    Six years later, I am just as good sexually as I used to be prior to treatment.  It's even better probably because I am relieved to be back to the old me and GRATEFUL.

    On another note -- I wish I would have started a consistent yoga practice during treatment to help with the stresses of having cancer in general and to help me live and appreciate 'the present.'  Restorative yoga is a beautiful thing and 6 years later  I know that my hips and pelvic region have tightened significantly -- much of it it do to radiation, I am sure.  Yoga has helped me TREMENDOUSLY in improving flexibility, etc.  So don't wait like me, START NOW.  

    And on a closing note, I am in the best shape of my life at 53 years old.  I will have my International Assoc of Yoga Therapists (IAYT) teaching certification in May with the plans to teach cancer survivors.  I just started kayaking and cycling on a weekly basis.  My point is not to 'brag' but to show survivros that ANYthing is possible after cancer.  It won't define you unless you let it.   

    With much love,

    Angela

     

    Thanks

    Angela, your post is very encouraging. I'm 12 years cancer free now, and basically have not 

    had any sexual activity during the whole time. My husband passed away a couple of years 

    ago. I have recently met someone and we are getting very close. I'm so afraid of any sexual activity 

    due to the pain, I have damage from the radiation and although the desire is there, I'm 

    so worried that I may not be able to do this. I am encouraged by your 

    post and hopefully it will be what I want it to be. Thanks for sharing 

  • xxsarahxx
    xxsarahxx Member Posts: 10
    #7
    My understanding is that

    My understanding is that surgery is technically possible, (my radiation oncologist's nurse told me that they had a patient that had reconstructive surgery for stenosis using tissue from her bladder), but that it may not be recommended due to the permanent effects caused by radiation.  Without going into all the biology, tissue just doesn't heal as well once it has been radiated and certain tissues are worse for this than others.  The anal area, for example, is one of the worst, so many surgeons won't work on any irradiated anal tissue (for stenosis, for example).  I'm not sure how bad the vagina is for this, but that might be an obstacle to surgery.

  • Nutmeg1
    Nutmeg1 Member Posts: 21 Member
    #8
    Just finished 6 weeks of

    Just finished 6 weeks of radiation. So yes, everything in my fanny is so sore. Adding to the grief of it all, it seems as I have a fissure - a tear between the vagina and the anal canal.

    I was originally instructed to use the vagina stretchers a couple of weeks after radiaition fininshed. But now this seems risky. I am yet to see my GP, who I hope will point me in the right direction. 

    I was wondering if I should see my rectal surgeon too. So many questions, so much pain. :(

     

  • mp327
    mp327 Member Posts: 4,440 Member
    #9
    Nutmeg1

    Sorry to hear you are dealing with a fissure.  Yes, by all means, see your colorectal surgeon about this.  I send good thoughts and wishes to you!

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    #10
    Nutmeg

    I would be leery of using dilators now since you suspect a fissure or fistula. So sorry. I hope you can get in soon with your doctors. 

Discussion Boards