Poor vagina after chemoradiotherapy

Hello Michelle,

I also have the silicone dilators, and although they are much better than the NHS ones, I found them uncomfortable and they made me bleed, so I wimped out and sort of gave up; big mistake. I would advise you to keep trying even just with the tiniest one to stop the scarring becoming worse, especially if you are hoping to resume some sort of sex life in future, and try using a small vibrator to keep it all working.

The subject of smears comes up here regularly as it is something which affects most of us here at some point. I was called for one by my GP, and the nurse had a hard time getting the speculum inside me, and so had to give up. My GP then wrote to my oncologist who advised that smears are not effective after radiotherapy as the results are not reliable, and no point in carrying on anyway. But I would check this with someone who was involved in your treatment just to see what they advise for you.

All the best

x

Hello PinkShells 

Many of us have found that there is some collateral damage after radiotherapy and I am sorry that you are now experiencing this.  I managed with the dilators eventually but my external skin around the whole area is so fragile that even sitting can at times be painful - who would have guessed that even sitting down firmly on a hard chair now is out of the question.

I also had a premature menopause at 43 after electing to have my ovaries removed during a hysterectomy and afterwards, after a bit of trial and error settled on patches which were entirely trouble-free.  At my age I no longer have smear tests so I cannot help there.

I think if you have scar tissue in your vagina I hope that the gynaecologist will help you with this.  After all s/he should have experience of scar tissue, if not after radiotherapy then after a difficult childbirth.

And keep on with the dilators in the meantime.  Please let us know how you get on with gynae.

Wishing you the best of luck.  I am sorry I can't be of more help.

Irene xx

Hi, thank you so much for your input.  I certainly too have been tempted to give up with using the dilators but continue to march on and will do so until told otherwise, despite personally thinking its a little waste of time as don't feel i'm progressing.

When i speak with consultant next, i will raise smear tests and certainly ask the question as to whether i will require one.

Thanks again x

Hi Irene,

I've been assured that a referral has gone in to the Gynaecologist, but we will see how long this takes. I may drop the Colorectal team a call, to see if they can maybe escalate for me ;-).

I have just turned 45 so menopause was a bit of a shock, but have been exploring and researching and found lots of different tips and tricks.  I have been on HRT not for 3 months and have been using the gel, which has proven ok at the moment.  Will see how things continue.

Will keep you posted on how i progress, thanks as always for your help on here.  Really feel this space is so helpful and re-assuring.

Michelle x

Hello Michelle

I don't have any personal experience, but I remember reading a post on this site about vibrators. The lady concerned found them more effective than the prescribed dilators.

Regarding smears I have also read lots of conflicting info, but I read a post from a couple of years ago that said a HPV test is done first, if positive a full pap test is done. It was a Macmillan post.

Prior to treatment I had an HPV test done with my smear, it came back positive for HPV 16. The gynecologist has asked that I repeat this test this month. I had CIN3 28 years ago, treatment and it cleared. I believe the HPV virus travelled and became active in my anus/rectum after menapause. I will also have a HPV test done on my anus, as pretreatment I had a stricture and this was not possible.

If I had known about the connection pre diagnosis, I would have had an annual HPV test.

All the very best

Ally xx

I think also on a practical level, it's just not possible to do smears with some of us because of the stenosis, and I know if you are considered high risk they can carry it out under a general anaesthetic. 

Thank you Mrs Vanilla.

My anal stenosis is so much better after treatment, so hoping checks will be possible now.

Hi PinkShells 

I used the dilators for a while and then decided I didn’t need them any more. However, I waited a year after treatment to have sex which ended up being very painful and I also had some bleeding. I would try and continue with them if you can.

My GP examined me and I ended up being prescribed vaginal oestrogen, which has helped immensely. I’m only just 50 so although I was already perimenopausal my treatment has plunged me into post menopause. It may be worth asking if vaginal oestrogen could help you too.

Hello

I am over  2 years post treatment. I used the dilators but struggled with the larger sizes. The first few times we tried to have sex, it was way too painful and I worried that it would never be possible. 
Last year, I was due a smear test and the oncologist suggested that it would be worth having done if possible. I went into the docs to book the appointment. I explained how nervous I was to the receptionist- and why. She was very kind and booked me a double appointment with the most experienced nurse. 
I didn’t think it would be possible but the nurse used a smaller speculum and loads of lube and managed it! 
This gave me a bit more confidence and determination to try sex again. 

I then referred myself to the Late Effects clinic and saw an amazing radiologist who recommended Yes lube and moisturiser and also something called Oh nuts- these are silicon rings that are placed on the penis and act as buffers so that depth of penetration is controlled. 

Anyway, sex is still a little painful and cautious- and not back to normal but we are persevering and it’s definitely still improving even 2.5 years later. 
 I am lucky that my husband is patient and kind- and still wanting to have a sex life- even with all the other effects

I just wanted to say, keep trying. Things can still improve with time and patience. 

can you tell me more about the Late Effects clinic, please? I haven't heard of this before.