Vaginal stenosis, dilators & period pain?!

Hi Ladies,

It's been 6 months since I last posted, but I have been quietly checking in every now and then :-)

I just really wanted to ask some advice, and to give everyone a heads-up to the subject matter as it is certainly something that was never mentioned to me during my appointments!

Due to the cancer having spread down into the vagina (hence staged 4b) the brachtherapy (and external rads) were brought all the way down, not just up by my cervix. I'd handled all my treatment well, and responded really well too :-) Had some of the usual side effects, nothing I couldn't handle lol Anyhooo....I really suffered after the brachytherapy. Maybe I'd hit my wall but boy I suffered. It was like an open wound down there :-( couldn't sit, couldn't stand for long, so sore, couldn't pee without crying in pain - douching wasn't helping. After speaking to various people I got referred to the skin clinic at the Sussex Cancer Centre and the wonderful nurse took one look and gave me "Nu-gel". This is amazing stuff and everyone needs to pass it on!! The relief was instant, and the following week she discharged me saying i'd healed!

So - during all of this i'd been checking progress with a mirror, and noticed a white area at the entrance...paranoia kicked in but then i realised it was probably just inflamation or scar tissue. At my 1st follow-up a couple of weeks ago it turns out it was vaginal stenosis?! My onc asked me the usual questions about how I's been etc and then wanted to examine me...except she couldn't because she couldn't get in! I'd basically closed up down there....healed so well i'd healed closed lol (seriously, you have to laugh about it!!) She said she'd only ever seen it after a year or so, never after 6 weeks. I think should I be panicking....This of course meant she couldn't feel the cervix to see how i'm getting on so examined through the back door (sorry ladies!) and thankfully said she couldn't feel any mass. Hurrah! Surgery was mentioned depending on how deep the adhesion was :-/ wasn't lookinf forward to that after everything else lol

The following week I met with a gynae-onc surgeon who thankfully was able to "break through"...not without discomfort but over quickly with no need for surgery. Strange though...felt like waters breaking as there'd obviously been a build-up of fluid. I was so relieved because he'd been talking about me possibly having been "obliterated" down there and needing reconstructive surgery?! omg I left that day armed with a natty set of dilators and instructions to have as much sex as possible as that is apparently the best exercise loll (need to find a chap first though, ladies ;-)  )

So...after having patiently read my waffle I was wondering if anyone else has had or come across this?! I was expecting inflammation and tightening (not necessarily a bad thing after childbirth!) but not sticking together!

And how are you getting on with dilators? I'm still on smallest size...almost afraid to move up but know I must.  Oh - and i've also started with a few hot flushes and get major night sweats. the ball is rolling for HRT, but is it normal to feel "period-y"?! I swear at the mo I have mild period pain....don't want to get paranoid hhaha

Take care ladies & thanks for your patience. Sending you all big hugs and positive vibes :-D

Tracy x

try using replens 3 times a week also when dilating its great, and it will also prevent the tissues sticking,

you should be able to get it on prescription.x

Hi Tracy - I couldn't read your post and not reply. Holy Moly what a intense thing to happen to you! Congrats on your response to treatment - fingers crossed it all keeps ticking along!

I have not had the same experience but definitely have stenosis - but have been using my dialators without fail since about 4 weeks after treatment - even then - I had started to shrink quite significantly and had to start from the first one. I'm now on number 4 but even this isn't comfortable yet - although much better than it has been (I am 6 months post treatment)

I am on HRT and have been since I finished treatment and it's amazing - my menopause systems came on so quickly and was unbearable for me - but everyone is different - I was up all night with hot flushes and my moods were bad..i was like Jekyll and Hyde lol! on the HRT i am back to normal - obviously with no period though - which is one bonus I can take from all this.

Anyway just wanted to say Hi and let you know how brave you are and I admire your strength and abilty to laugh at things - I guess it is truely all we can do some times.

Lots of love

Vick xx

Hello Tracy -

I came across your post here by chance. I haven't been on the site for months as all the ladies on here seemed to be stage 1 or 2 CC, and I really felt I couldn't relate to them or their stories  as I was much worse off.  I was diagnosed 22/10/12 stage 4 and you're the first person I've found with similar staging.  I've had rad. hist. followed by 6 chemo, 25 radio & 2 brachy - ending on 1/7/13.  I'm now using the lovely dilators but have not experienced the problem you've had with completely 'closing over'. However I do notice my vagina is a lot shorter, as I can't get the dilators fully inserted. I've moved on to the second size now and I think that the width is not the problem but the length. After seeing the oncologist at my first check-up since treatment ended, she didn't seem overly concerned just told me to continue with using them. As for intercourse - my husband  and I tried for the first time since I was diagnosed back in October - sorry for the following detail - but  he couldn't get all the way in, he said he was but I think he was being very understanding & trying to reassure me it was ok.   I suppose I'll just continue with the dilators & hope it doesn't get worse.

Can I ask how the mri went on 5/4?





Hello bogey woman, Glad to see an update from you somewhere as had read your first posts (I read a lot!!) then there where no more. I hope you are doing ok with everything and wish you lots of luck. I will continue to look out for future posts. :-)

Hallo amazing women. My friend was diagnosed with stage 4B cervical cancer a month ago and I find your post so inspiring. Please let us know how you are doing. 

Regards Elsabe