Vaginal Stenosis

Ninka

I have just read through and you really are caught between a rock and a hard place; when I was diagnosed and really wasn't coping my doctor put me on Mirtazapine which has served me really well.  I never felt 'out of it' but it went a long way to calm the awful thoughts that played constantly in my head.  The team treating me knew I was on it and it never affected what I was given in the way of painkillers, so I am hoping that they find something that suits you equally as well.

Irene xx

Hi Irene

Thanks for this - that’s exactly how I feel tbh. This issue is that prior to starting cancer treatment I was prescribed Mirtazepine in addition to my existing Escitalopram, due to a deterioration in my mental health & the Escitalopram no longer working for me. I have suffered with depression & anxiety for some time now over several years. 

At the time I implored that whatever I be prescribed, be suitable for my imminent cancer treatment & journey. I was assured that the combination of 2 antidepressants would be safe & ok.  However the psychiatrist seemed only to be concerned about the risk of serotonin syndrome possibly arising from the combination of these drugs together (as there is a small degree of risk). But gave no consideration to the issue of my likely to be needing pain relief as part of any cancer treatment & its aftermath - something he was fully aware of at the time of prescribing. 

I’d counted on the certainty of pain relief as a means of being to cope throughout chemoradiation & everything else. It’s what we all hope for isn’t it & to some degree, expect as a right. (Although as we all also know - not unfortunately, a given). When the nurse was about to prescribe me codeine or liquid morphine for my escalating radiation burns but then realised she couldn’t due to the contraindication for these two antidepressants together posing too high a risk when used with serotonin containing pain relievers, I was completely thrown - hence my complete over reliance & obsession really with creams & gels etc to help me cope with &/or prevent the burns from getting too bad. You may remember my posts on the subject! Thank god for you all though & your sage advice as it was a way of me coping with & being able to be in some kind of control over all of that - when pain relief then proved elusive. 

Since treatment ended it’s been me that’s flagged up this issue with my GP & oncology - as I cannot cope with going through any further treatment knowing that either pain relief will be refused or my antidepressant will have to be stopped & me switched over to something else abruptly.

The issue is complicated by my experience of adverse withdrawal from antidepressants in the past where (for me & not necessarily everyone) I can only describe it as a living hell lasting several months. But as I’ve got no other option I’m (with the support thankfully of the MH team) attempting a taper down now, while I wait for my scans & results to come through, in this window that I won’t have again - given that scans for the next foreseeable will be every 3 months & the likelihood for further treatment, is I believe in my case, most likely quite high. 

It’s a minefield. Now this stenosis is threatening to disrupt this plan - which for those of you down the line, have likely had to get accustomed to experiencing. I’m sure it’s no easier to deal with really, whenever it happens regardless of how many times. 

The good news is that I’m being offered an appointment with the oncologist (TBC) so it’s being taken seriously. 

And in the meantime I’ve just treated myself to a mini spa evening with hot stone massage as my weary bones & frazzled mind are crying out for a bit of TLC! And it will be a good way of finding out how my stoma performs in these conditions!

I’m really pleased Mirtazepine is working for you & that it gives you some relief & a bit more peace of mind when going through all of this. I’m finding it effective too so fingers crossed. Mental health should not be underestimated at any time, but especially when going through something like this. Just frustrating that as per the norm, & what we have to constantly fight against - that tendency for prescribers to work in isolation & not holistically. I mean you’d expect more from psychiatry really but in practise they also don’t practise what they preach. But don’t get me started on that one!

…. & apologies for another long ramble.

Sending you best wishes 

Lorraine

xxx

Lorraine

Not a long ramble in the last and it is always good to get the fuller picture.  Both my daughters suffer from depression (as did I as a young woman) and have been prescribed Sertraline so we think with us it is very much a family thing - not that they were ever aware of my mental health history before I had them, it just happened to them as well.  I am not in the least surprised that you want to get everything sorted out before you need any type of pain medication and my mind boggles when I think of the sores I had and not having the opioid pain relief to help cope.

In a strange coincidence, I take bisoprolol for atrial fibrillation and as I hadn't had any episodes for a long time, with my GP's ok I decided to come off it.  Within days I had pounding heart, fight or flight feelings, overwhelming anxiety.  At the time, I thought I must really need this drug.  And then I looked online one sleepless night and I discovered a minefield out there of other people who had had similar problems when they stopped.  It was withdrawal, nothing to do with needing the drug.  It took me a good three months of horrendous symptoms to get back to myself.  So you have my heart-felt sympathy going through months of withdrawal causing further depression and anxiety problems as well.

I hope you enjoy your spa, sounds lush and I will be thinking of you and hoping for holistic treatment for you.  And please do let us know how you get on with your oncologist.

Irene xx

Hi Irene

Thankyou - I will. And yes that’s completely what it’s like & yes you feel as though you need the medication more than you thought. Thank god for the internet & these forums - I was the same when I first came off an antidepressant at my doctor’s suggestion - which was pretty much to stop it immediately. I was told that I clearly wasn’t well enough & to go back on them when I reported my distress. It was only years later from a similar foray online in the early hours that I learned I had been suffering from withdrawal & if anything having far worse symptoms from that, than I ever had from the depression & anxiety to start with. 

Really helps to be understood by someone who knows exactly what it’s like & exactly what it means to be going through all of this.

Notice I keep saying “all of this” in lieu of the C word. Probably because there’s too much stuff to be contained in just one word.

I digress. Kindred wishes & will update 

xxx

I feel a bit daft, asking when this thread is 4 months old, but I've only just found out that my anus is completely closed, I have a stoma! It's 3 years since my treatment finished and apart from passing bloody mucus occasionally, everything seemed fine! After being told about the anus during a procedure, it got me thinking about the vagina! Sure enough, I tried to insert my finger and it bled! I should hear from my consultant soon, do I mention this to him? The dilators I was given have disappeared, probably thrown out by now, should I try to buy more? I'm too old for this, my brain is going to explode! 

Moira x

Hi Moira

Not daft at all - it’s alarming isn’t it - my reaction  was exactly the same so honestly don’t worry. 

If you’re seeing your consultant soon I would mention it to them. In my case I was convinced mine was completely sealed shut but the consultant examined me & kind of managed to get in! (Via a bit of a pulling technique & then insertion v v gently).I was mortified & felt so stupid for not being able to get into my own foof! And wasting their time etc. But they were v sympathetic. 

However I’m still only able to use the smallest size of dilator but the kind ladies on here have reassured me this is still sufficient for them to get access for smears etc (And I don’t use it nearly enough & not sure in practise how often others do /are able to do, so again you’re not alone). 

If you don’t suffer any issues down there otherwise (ie infections) & your normal secretions can find their way out (although this changed for me too post radio but then am menopausal etc anyway) then it might be a sign it's not completely sealed over - even though it feels like it when trying yourself.

Even if it is, I’m pretty sure there are procedures that can be done to help remedy  it (no experience of this however).

I’ve got a stoma too & still pass mucous from my bottom. Am guessing that’s the same for you - unless you had the surgery (APR) to seal that completely shut when you were given a stoma?

It is a minefield! Thank god for this forum - I don’t know where I’d be without it!

Hope that helps 

Lorraine x

Hi Lorraine,

thank you SO much for your reply, you have no idea how reassuring you've been! I'd been sent for a Flexible Sigmoidoscopy but the surgeon said it couldn't be done without a general anaesthetic! Being 74, I'm long past smears and things but I'm terrified that I'll need an internal at some point! I'd buy some dilators but they are so expensive! My next scheduled appointment with my consultant isn't till August but I have a feeling Ill be seeing him before then!

I completely agree with you, thank goodness for this forum, the members on here have helped me so much, just like you've done today!

Thanks again Lorraine,

Moira x

Moira

You’re v welcome. I’m sure there are others on here who have had the sigmoidoscopy under GA. Again so much easier to say don’t worry (when it applies to someone other than yourself!) but think having the GA though a bit scary (yet another procedure) will be your friend when it comes to them trying to get access if there’s some stenosis there.

I think it’s really common both vaginal & anal. But it feels like it’s not really followed up or asked about unless we push for it. Women’s health and all that

Well the thought of a smear now fills me with dread tbh -so I can well imagine for you having done with them for some years, that it’s the last thing you’ll want to think about!

Hope I’m not sugar coating too much because I know how agonising all these things are.

Hope it goes smoothly for you. Keep us posted if it helps 

xx

Thank you so much,you’re right of course! The nurse who was with me-said it was completely up to me, if I went ahead with procedure under GA, which I know it is, but if anything needs fixing, I’d like it fixed please!
I hardly knew what stenosis was before this, in fact I’ve come to realise I don’t know that much about my own body! I also hated smears but another necessary evil that I wish I’d done more regular! I’m getting up there in years now but I’ve still(hopefully) got a lot of living to do, so thank you for the reassurance and to everyone on here for their encouragement,

Moira x