Will I ever have sex again? I'm so scared

torrance said:

to worry or not to worry!

Layla,

Worry only about what you can control right now.  Find out about what you don't know about and make an action plan from there.  Vaginal stenosis (narrowing/shrinkage/etc) after pelvic radiation is a very common side effect.  The degree of shrinkage depends on so many things that are out of your control.  As stated already, check with your rad onc about the use of dilators during treatment.  Mine did not recommend it during treatment because of the pain and discomfort it would cause.  When I completed treatment it was more than six months before my rad onc had me try dilators because my healing was going so very slowly.  I remember after the visit he came out and asked the MA to get me a dilator and to send the perscription to the pharmacy for premarin. The MA discreetly put the mysterious dilator in its box in a plain brown paper bag and sent me on my way.  I never opened the bag, didn't know what I would be seeing!  I waited until I got home, went in the bathroom to check out this mystery.  Once I saw it, I thought, WOW, I guess if I can use this it shouldn't be too bad!  Then I opened the premarin and checked out the applicator and thot, this IS going to be a breeze!  So that evening came and it was time to put these "therapeutic" tools to use.  OK, so that didn't happen, there was NO WAY I could even use the applicator, which about the size of your little finger.  So I contact my rad onc who advises me to just apply the cream to the external area twice a week until the next visit.  Ok, next visit, still can't use the applicator yet and he has me request a smaller dilator from the nurse, she gives me a size small.  This time I opened it and looked and told her that I couldn't even use the applicator and this size small was larger than it was.  She was clueless.....long story, I ended up contacting my OB/GYN and telling her the dilemma and she immediately offered a referral to a Pelvic Physical Therapist.  I'm thinking to myself, OMG what is that, and it sure doesn't sound like much fun!  After my consult with the PPT we had to come up with a plan.  Improvise and innovate were the key to treatment.  She had never dealt with anything quite so severe and there is NO protocol for treatment.  Anyways after over a year of treatment, things are hugely improved and almost back to normal as far as function goes.  I've dealt with multiple bouts of cellulitis, infection and tears and can proudly say it was all DOABLE.  I hope my story serves as inspiration, that even the worst case scenario can have hope.  Sorry if this is TMI.  If you want more detail, please feel free to ask.

Joanne

no information about the side effects from radiation.  I am reading your stories and am so glad that you have had some education and preparation about the future of your vagina and sex life. I only now found out that my onc radiologist should have prepared me for the eventual stenosis that has taken away my sex life. I was not told about a dilator or how important it is to keep the opening from developing scar tissue. The fact that this information was available and yet not shared with me is beyond belief to me now.  My stenosis has made my vagina very short. I believe I can stretch the opening further with a little effort, which is fine. But as far as I know, there is nothing I can do about the length. the stenosis basically covers the cervix and the sides of that area.  I did learn about a pelvic therapist a few months ago, I saw her a number of times but it did not help.  Maybe I should see if I can find others in that field who might have a different approach.  I'm so grateful I found this site. Joanne, I am sending thes message to you, as you seem to be very knowledgable and proactive. Anything that you or the other ladies can do to enlighten me would be so appreciated. Thank you all for sharing such intimate stories. I am grateful.

Sandy