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3yrs after treatment stage 2a external / internal rad. cisplatin , 5fu, hysterectomy
sex was very difficult and i didn't use the dilator very much .Now i have vaginal stenosis so bad that the doc can NOT do a vaginal exam or can i have intercourse Yes I regret not using the dilator all the time and yes ladies it is a lifetime issue.
FYI:
At the upcoming National Cervical Cancer Coalition (NCCC) conference Oct. 2nd, 3rd, 4th, 2008, there will be a topic on Gyn. Cancer and sex and it will touch on pain issues too.
NCCC
well, It seems that I am starting to have these issues also. It gives me encouragement to use the dialator. Where is the conference at??
The conference this year, called: "Patient <---> Clinician, LISTEN and LEARN" will be held Oct. 2nd, 3rd and th at the Hilton Hotel in Universal City , Los Angeles, Calif.
It will be building upon last ears meeting and is sure to be an amazing conference with new speakers and a wonderful personal experience.
Alan
NCCC
www.nccc-online.org
Hi Alan -- Is this a sure thing so we can make our travel plans? Also, is there an agenda yet with a list of speakers?
Thanks!
Dear Toja
So sorry to hear of your difficulty. Thank you for sharing and warning the rest of us. I wasn't told how long to continue using the dilator for. I am one year post treatment. Do you know what they advise?
Susan
When I confessed to my gyn/onc that sex was not happening all that often, he told me that it was vital to my vaginal health. It was painful for so long that I just didn't look forward to it. But it's not a problem anymore :)
what I understand about this ,is that the mucus get so thick because of the radiation that the walls of the vagina sticks together and once stuck its all over with. this is a"for the rest of your life situation"
i'm so sorry to hear that you've had this occur, toja. is there no possible remedy, perhaps even surgery, that can be considered?
hi toja,
I'm so sorry about your vaginal stenosis. I came across this publication from MD Anderson that talks about prevention and treatment of vaginal stenosis. I thought it might be helpful to others who are currently going through radiation. It mentions something called a "stent" -- has anyone heard of that? As an alternative to the dilator.
Well -- now my computer has locked up on me, so the article has disappeared. I'll post it in a minute.
Here's the article: http://www.communityoncology.net/journal/articles/0310665.pdf
Hi toja
It is 13 years since I had radiation treatment for cevical cancer stage 2b. I used the dialators 2 x weekly for 5 years and over that time the vagina slowly narrowed and I had adhesions that needed to be regularly broken. I also took estragon inserted into the vagina when I used the dialators with lubricant.
After five years I started getting very depressed and dishartened and became very inconsistant using the dialators.
For anyone at an earlier stage concerned about vaginal stenosis and necrotising tissue from post radiation symtoms I'd recommend you do some research on hyperbaric treatment and if it is suitable for you.
But in about 2005 when I stopped the HRT I had far more problems. I now have a shortened vagina and am also unable to have examinations. I have a fistula and significant stenosis.
A couple of years ago I had hyperbaric treatment to address the bleeding, urinary, bowel problems that were related to post radiation side affects. This really helped me and when there I met a girl with a similar diognosis that was having the same treatment to help with problems at a much earlier stage.
The hyperbaric treatment has reduced some of my problems and the improvement has made my life easier to live.
I'd suggest if you still have this issue untreated that you ask your gyni oncologist about it.
As I described I used the dialators routinely and the adhesions had stopped before I got less religious about the treatment.
When I had the treatment they said I had to use them for a year, obviously that wasn't accurate.
I noticed the date on your entry is from a year ago, I hope you have had some good outcomes and have good quality of life.
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