Vaginal Stenosis

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Hi Ladies

Looking for some wisdom & reassurance. Was prescribed dilators to start using 2-4 weeks post treatment. However feeling fully healed took me longer & I’ve been struggling with my mental health (which predates but not helped obviously by all of this). So I’ve just not felt able to go there. It’s now 8 weeks post treatment. Finally attempted to & its completely sealed up shut!! I’ve tried lubrication & using just my finger & it’s not happening. I’m panicking & feeling bad for not trying sooner. I had my 6 week follow up & was dreading being examined but there was no stenosis anally (thank god) so I kind of thought I’d be ok vaginally. 
I’m now worrying about periods - am perimenopausal but prior to treatment was having very irregular ones. How will they get out? Obvs radiation can put you into menopause anyway but..Plus smears etc.  

Has anyone had vaginal stenosis? I have looked on prior threads & it seems common. But how is it treated? I can’t imagine trying to pry it open myself is going to work (feel sick at the thought). Do I see my GP to refer to gynae or the cancer team? Is there any procedure anyone knows they can do?? 

Thanks in advance of any replies 

xxx

  • Hi Ninka I have just read your post and sorry you are struggling with the dilators. I don’t think you have left it too late to start using them as I wasn’t given dilators until I was about twelve weeks post treatment. For me personally it was something I attempted very very slowly and it took really ages before I could insert the third size up. I would have a bath so every was warm and relaxed and then use lots of lubricants. But you should still be under your oncologist care and to check if everything is okay I would suggest you contact them and ask them to take a look to see if everything is okay. That way at least you know you can’t do yourself damage. 

  • Hello Ninka

    I don't have vaginal stenosis - at least I don't think I have, but I have anal stenosis and am having a procedure later this month to stretch the anal passage (I am assured it will be done gently) to see if it will help my problem passing stools.  What I do have is extremely sensitive fragile skin in the entire area.  I am sorry that you have this to contend with and as Jaycee suggests I would mention it to your oncologist as soon as you can.

    I would be guessing if I said they can do the same to your vagina as I am having done to my back passage, but then, I am not totally closed, I am still passing stools, albeit pencil thin.

    I hope the oncologist can at least point you in the right direction for further treatment for this.  Please let us know is they can help.

    Irene xx

  • Hi Jaycee

    Thanks for replying. I think you’re right - I’ll try the oncologist tomorrow & see what they say. I tried again after a bath, lots of relaxation but it’s not possible to get any entry with even a tip of a finger. Am used to using tampons this way so it’s a bit of a shock. 

    I also now realise that discomfort/pain that I’m still feeling isn’t what I thought is my urethra - but actually my vulva/vagina. I’ve always had a kind of numb feeling & a pulling sensation or as if there’s a block there - since & during radiation - v hard to explain. As my urethra was so damaged by radiation I assumed this was where the sensation is coming from - but on trying to insert (gently) this sensation gets worse & I can especially feel it if I try using my pelvic floor.

    Will update how I get on in case this helps anyone else. 

    I’m mentally preparing for APR surgery - as I was told by colorectal surgeon I will almost certainly need this due to location of my tumour & no margins & likelihood of it not getting completely shrunk (6cm) by chemoradiation. 

    The thought of possibly an additional procedure  is throwing me - but maybe they could do it all in one go?!

    Best wishes to you wherever you are on your journey xxx

  • Hi Ninka

    No one even mentioned to me that this was a possible outcome of the treatment. It was only being on this site that I became aware of it . I saw my gynecologist about 5 /6 weeks post treatment and he confirmed vaginal stenosis. I asked if it was too late to do anything, he replied ‘ it’s never too late and there’s always something that can be done ‘ . I found this really reassuring. When I had an examination he did what I can only describe as a swift, sharp pull down of my vagina . Not painful but I was a bit taken aback . Not something I would have done even if I was able to!  I guess they know what they are doing whereas we are very cautious and careful and scared to damage ourselves further .  I’ve made it to number 3 size and really should try the next one , but it looks enormous!! 
    Definitely check with your oncologist and I would also see a gynecologist too for good measure. Good luck xx

  • Hi Irene

    Thanks for replying - I had read your post about your experience of this but anally & wondered if there is a similar procedure for vaginal stenosis. 
    Like you my skin still feels very delicate too - I seemed to heal dramatically quickly but it could have all been quite superficial!

    It must be difficult to contend with trying to pass bowel motions & getting stool consistency right, not to mention the constant fear & discomfort so I do hope the procedure you’re having helps. And as you say that it’s a gentle one! Will you be under GA for it do you know? 
    I will follow your updates to see how you get one & wish you the very best with it. 

    Someone on a stoma thread mentioned “whack a mole” to describe the ongoing effects & issues this “journey” seems to entail. And very rightly that they often feel like the mole being whacked at the same time!

    Wishing you the best xxx

  • Hi Elf66

    Oh my goodness thankyou so much for replying! It’s such a relief to hear someone else has experience of this although only sorry you’ve had to experience it too. 
    That sounds so promising though - I will contact oncology /gynaecology asap tomorrow then & feel a bit less gloomy about it all.

    Think I’m feeling guilty/bad for not starting sooner but it really was not possible. I’m just hoping that as scar tissue has had longer to form that they can still do something fairly straightforward to get me moving again. 

    Can I just ask - were you completely closed or were you able to get some entry if only minimal?

    I know when I saw the size of the dilators & how big they go up to I was a little alarmed!

    Great that you’ve been able to progress up  though.

    Thanks again for replying - will feed back on how I get on 
    Xxxx

  • Hi again

    Honestly I’m not sure if it was completely closed . I’d stopped investigating once I’d made my appointment, as it set me off worrying! I’m certain if it wasn’t, it was very very minimal entry - especially after the gynae did that ‘procedure’ to get a look. 
    Please don’t feel guilty or bad . Goodness knows there’s enough that we’ve had to deal with . You are doing brilliantly . I know exactly what you mean though as I’m the same - questioning whether I could have done more to help myself etc etc but  I’m trying to be kinder to myself now . 

    Definitely feed back on how you get on if you can . 
    Wishing you all the best xx

  • 'Whack a mole' sounds very apt!

    I am having the procedure done under GA and he is going to try and band piles that I have at the same time.  The last time I saw him he broached the subject of a colostomy if this procedure doesn't work or if it shrinks back quickly (he said this can happen because of scar tissue and will need dilating daily - the mind boggles!).  He said it can be life-changing for people like me. I am very open to the idea as I very rarely leave home before 12.30 lunchtime as I have to wait until I am 'empty' and woe betide if I forget stool softeners!

    In some hospitals, particularly in the States, dilation starts the same time as treatment which makes me wonder if this is something the UK should adopt.

    Thank you, and wishing you all the best too.

    Irene xx

  • Hi Ninka, 

    I've got a little vaginal stenosis, but nothing so drastic as yours. Like you, no one mentioned to be beforehand that both vaginal and anal stenosis were possible, and I've got the anal version pretty acutely.

    No one here ever mentioned dilators or anything like that. I asked my gastro doc if there was anything to be done about the terrible pain of anoscopies with my degree of stenosis, and she said just doing the exams and forcing it open are the best possible thing.

    Obviously I heartily disagree.

    I'd long been past menopause, so nothing to offer there, but I'm glad to see you're going to see your gyno. 

    Just another of the nasty little surprises so many of us get in our journeys.

    :( Suz

  • Hi Suz

    It feels barbaric to be expected to just suffer it out & have read some of your threads about preparing for each anoscopy & the abysmal lack of concern about getting pain relief in in time that you’ve encountered etc. My heart goes out to you. No comfort to you that in the UK we thankfully don’t have to suffer these -as far as I understand.

    Interestingly I was advised about dilators vaginally & had always intend to use (but healing & then my mental health got in the way until now) but was not really informed about anal stenosis. It was listed among all the other myriad affects but from hearing how prevalent it is, it’s a concern that it’s not addressed very proactively & by the sounds of it in the US - hardly at all.   

    I’m waiting back on the oncology team via my colorectal nurse specialist so will see what they say. 

    I’m currently having to change medication that I take for depression mainly because it is preventing me from being able to access adequate pain relief due to the risk of serotonin syndrome occurring. So when my radiation burns were getting really sore I was told I’d have to manage on just paracetamol because of this serotonin syndrome risk. I should say the risk is only a factor because of the combination of antidepressants that I take so as not to alarm others. As am sure many of us may be taking an antidepressant & have been able to receive stronger pain relief when needed. 

    This probably should be a thread of its own but the point being for me that in order to change medications I’m having to increase dose of one to decrease the dose of the other & taper down over time. Historically this throws me into a really difficult state of withdrawal that takes a long time - time I don’t really have as I have been told I will likely need APR surgery - where my need for pain relief is going to be pretty high I would imagine. So I’m trying to get this underway now while I have a bit of time between getting scans & results etc.

    The only worry now is if I will need any stronger pain relief because of any procedure required for the vaginal stenosis I won’t be able to have it!

    So yep just another of the little grenades dropped that we just have to grin & bear! Hopefully this procedure - if one exists - will be able to be parked until I’m able to have it. If it works like that??

    I will update & apologise for the ramble!!

    Xxxx