Vaginal Dilators

Hi

Thanks for sharing your experience it’s so important to talk about this taboo subject as the medical professionals certainly don’t. 

I’m about the same as you. Hubby can get half way in then vagina starts to ‘smart’ and I get the fear. Like you my libido has well and truly gone out the window. I think is a mixture of the psychological/ side effects of cancer and the menopause. I’m 49 and had a blood test done earlier this year which showed I was in menopause, although I haven’t noticed many symptoms other than weight gain. 

I talked about my sexual function with my GP. She wasn’t very helpful as she has no experience of AC but she prescribed me Vagifem. After using it for 6 weeks I’ve finally noticed a slight change. I’m more lubricated and my internal tissues seem a little softer. 

I am on a forum for vaginal atrophy, not the same as stenosis but similar. Many of the women on there recommend swapping dilators for a dilo which makes sense as it replicates the real thing. I’m going to give it a try! 

Hope you continue to make progress. 

Sx

Hi Debh1

I started to attempt sex after I’d been using no. 3. My oncologist advised sex should be possible once you get to this stage. He told me I’d probably never get to 4 but out of curiosity I’ve tried and got about half way in. 

You’ve just got to go for it and give it a try. Things will feel different for you both but you might be pleasantly surprised. As you say, you can stop in a second and you probably will the first time. It’s about building up confidence and it takes time and lots of attempts. I’m still not confident 17 months on but I live in hope. It’s also important your partner understands the changes that have happened to your body and that he needs to go very slow. 

Good luck! keep sharing as it helps others. 

Sx

Hi all

I am too scared also! I am a year since my positive results for T4 AC . 

Sex is the furthest thing from my mind! I have used dilators but very very painful! 
I am due a smear and keep putting it off. Has anyone had a smear since their treatment??? 

I am lucky to have a very understanding husband however it would be nice to resume some intimacy. I feel damaged and a bit of a freak! Any advice very much appreciated! 

cant talk to anyone about this as no one gets it! 
thanks 

Lorna xxxx 

Hi Lorna,

I’ve just had my 16 month check up and spoke to my consultant about my smear test which is looming in February. She told me I wasn’t to have a one and she would write to my GP to explain this. She said I needed to keep an eye out for changes down there, spotting, pain etc and that they would just do a biopsy,  if there were any signs of anything going on. After radiation a smear can show false positives. 
I would mention this subject to your consultant at your next check up or get in touch with your Macmillan nurse for advice. All hospitals seem to do things differently.

Hope this helps

C x x x

As a lot of A/C cases are caused by the HPV virus then is it not really important to have a smear test to catch changes early? Where I live they test for HPV when doing the smear & if there’s no HPV present they don’t go on to test the sample any further. I’ve had A/C and also had pre-cancerous cervical cells years ago, caused by HPV. I had cryosurgery for the pre-cancerous cells on my cervix. My A/C is caused by HPV 16.  The same strain as my pre-cancerous cervical cells. Since being diagnosed I’ve read that women who’ve had previous problems with smear tests are at greater risk of HPV related A/C. For such women they recommend an annual DRE. Had I known this before I would have followed this advice. I am so relieved there is now a vaccine being rolled out to boys as well as girls in all schools for the cancer causing HPV strains eg HPV 16 & 18 etc x

Hi 1in1500

I had an abnormal smear in my twenties but I don’t know any more than that I was checked for 5 years every year.. I’ve often wondered if this horrid thing stemmed from that, but all my smear results since have been ok. 
  I find many of the consultants tell you something different and the GP’s don’t have any answers.
  I think I’ll do a bit more research and ask a few more questions.

Thanks for all your information.

C x x x

Hi all,

Seems there is conflicting advise when it comes to post treatment smears.

I’ve never had an abnormal smear and my next one is due April 2020. I to am concerned, not only about the procedure itself as I have stenosis, but also how accurate it will be

I’ve discussed smears and how I can protect myself for the future, with both my AC oncologist and surgeon. Whilst I don’t know if my AC tumor was HPV driven, apparently the original biopsy would have to be tested to know for sure, they’ve advised that AC patients are vulnerable to other HPV cancers. Whilst most HPV cancers are rare, cervical isn’t so they’ve both said the best way to protect myself for the future, is to remain in the cervical screening programme, particularly as HPV is now tested for as part of the procedure.

My oncologist said that if the procedure was too painful or impossible due to stenosis or the cervix closing up, then a smear can be done under local or general aesthetic. He said many menopausal women with vaginal atrophy are also concerned about smears due to dryness, shrinkage etc but are usually able to still have their smears done by their GP. He said you can request a smaller speculum and you can also take along your own lubricant as long as its water based.

I know I’ve raised the subject of post treatment smears with  our online AC surgeon previously. I’ll see if I can find the post. If not, I’ll email him again for his advise.

Sx

Hi all, 

I had pre cancerous cells from a smear in my twenties, which were zapped by the treatment advised at that time. My AC diagnosis was age 51!!!! 

possibly a coincidence but the more I am reading on this site it may be related? 

My consultant does EUA every threee months and stretching at that time due to the anal stenosis. It may be possible to carry out my smear then I’m thinking. 

Thankyou for your advice and help! 

It is just very reassuring to know I am not alone in these issues! 

L xxxxxx 

Hi

Thankyou for your advice! I will ask my consultant in January about the smear. 

I don’t mind having one if recommended it’s just the thought of how closed I am!!!! 

Very much appreciate your help 

Lorna xxxx 

I wasn’t told my AC was HPV related, I had to ask. My Oncologist looked at the biopsy  report and confirmed it was. I think I should have been told this without having to ask. I have seen from my research that as far as cases of squamous cell AC are concerned the vast majority are caused by the HP virus.