Post Radiation - Coping with changes / Sexual, Femininity, Intimacy fears

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I am 12 years on from my ChemoRadiotherapy for Anal Cancer. There was little advice or information available at that time. I have struggled for years and stayed single due to low confidence after bodily changes - This doesn't need to happen to you!

This thread is for women who have finished their treatment and need help with the emotional and physical effects post radiation. I'm signposting the following that I didn't know about until recently and which have changed my life!

PRDA.org - Pelvic Radiation Disease Association who have been AMAZING. Twitter @PRDA_UK Information and sharing stories like yours with help and advice and weekly online chat forum

Jos Cervical Cancer Trust - @JoTrust - has been a revelation! The similarities are amazing between Cervical cancer and Anal Cancer in the after effects emotionally and physically. which I never knew Also the misinformation around HPV and the stigma I felt has been shared by them as well - all needlessly given education for patients and public. I suffered terrible shame as what little information there was 12 yrs ago suggest it was down to many sexual partners - it only takes one! And many people carry HPV but in only a few of us our immunity can't fight it and we get anal or cervical cancer. Jos Trust as its sometimes called have some excellent videos of patients talking about emotional and physical aspects of pelvic radiation.

If anyone would like to ask me any questions I am happy to share my experience as a patient but I'm not an expert. Take care, stay safe.

1in1500 over 3 years ago

Hi again Plusfive I am so glad you have posted this. There was no advice given to me at the end of treatment as to vaginal narrowing. I was given a pack of dilators and all I was told was to' use them as soon as possible'. I was told nothing else at all. What a shock a few weeks later to try and insert one. I did some research and discovered you need to start using them asap post-treatment. I started about 10 weeks post treatment because I was too sore and quite frankly did not have the inclination to use them. I use them x1 a week, I can have sex but it's not quite the same, things are very tight in there. I cannot believe this is not highlighted more. Like you say the stigma attached to A/C is due to the link with HPV but the fact is the vast majority of people come into contact with HPV and yet only a limited few, like us, seem to have an issue with it. It needs talking about a lot more x

Plusfive over 3 years ago in reply to 1in1500

Glad to have helped. I had the same lack of help as I was discharged. The only person who had helped during my treatment was the Research Nurse as I was in a clinical trial - I don't know how people manage without anyone.

I was given some very hard dilators and told to use them asap, which I did. I'm sorry you waited but that you are able to have sex. They advise lashings of lubrication and a product called Yes seems to help with the lack of feeling.

Wishing you the very best. F

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