This whole things seems to be an ongoing saga doesn’t it!
You both asked whether my painful vagina started during chemo - no it didn’t. I went off sex mentally though but could have sex, if you see what I mean! I did have my periods though - so one presumes I was producing oestrogen which you may be aware maintains vaginal health - keeps it moist, well lubricated and most of all a healthy ‘thickness’.
If this is happening to both of you during chemo all I can say from what I’ve read is that chemo has so many side effects - we are told the most common ones (nausea, hair loss, irritable digestive tract etc). If chemo damages cells in teh body, particularly the rapidly dividing ones, then perhaps we can assume that the interior and exterior of the vagina can also be affected. Just because no one is talking about it doesn’t mean it aint happening! As I found out, no one told me about how bad the dryness could be - I honestly thought that was the least of my worries as believed a ‘bit of KY’ would do the trick!
Mine maybe was more severe than most as I had two consequetive bouts of very bad thrush (for several months as didnt’ realise - it seemed like they were tamoxifen-side effects). It’s better now the thrust has cleared up, but sex (twice I think in the last 2 months or so) is too painful, like I’m about to be torn.
It is a really trying and difficult time this BC business - and the one thing that can make you feel good and get close to your partner causes pain - both physical and emotional for both. I think too why it’s not discussed alot as compared to cancer, the issue of not having sex/having painful sex is way down on the list of priorities for the medical profession, hence why no real research in this area - as yet.
May I suggest though - if you can - that you both try and get supply on prescription of Replens MD (yes you can buy in Boots but it’s nearly £10 for 6 pessaries - these last around 2 weeks and you need to keep using it! It’s like ). If you have a realistic/sympathetic GP could I also suggest that you get an internal carried out like I did (perhaps via the Practice Nurse if that’s easier for you) to check things out - they can tell if you are beginning to atrophy or not - and if the itching is very severe or you have a discharge, they can take a swab (as going thru chemo makes you susceptible to thrush and not just in the mouth.
Sorry to ramble on so long, but have been away from the Forums for a while.
Just wanted to say a big thank you to you all for being so frank about your very personal experiences. I too am suffering with all the problems mentioned above. I have been on Tamoxifen for 16 months and have just about conquered “fuzzy headedness” only to get the down below problems - bring back the fuzzy head i say.
I’m 32 and have posted a thread on the Younger Womens forum but someone pointed me over here. Am just so p***ed off that the docs don’t mention what could happen - and then don’t seem to care.
This is ruining my life at the moment - if not through the pain / itching , then an inability to do what I actually do want to do & have sex or the constant reminder that I am a lucky girl who had bc, 2 mastectomies and now has to live life with a dried up, knackered, as mentioned by others 100 year old vagina and a swollen arm.
Sorry ladies but feeling a bit bloody fed up at the moment.
On another note thanks for all the treatment options - I’m off to order the slyk stuff and i will insist my GP takes a swab too.
Hello Manda Hi, hope you dont mind me asking but how did yoy get rid of the ‘fuzzy’ head? mum has been suffering with this whilst on arimedex aswell as ‘downstairs’ probs tiredness, nausea and everything else that comes along with this ****** disease, she is much older than you but when i read your post (and i know you said fuzzy head has now come back) just wondered how you got it to go the first time? She is currently waiting to see ENT people at the hospital incase (ha ha) its an inner ear problem, i think not but we will see. Any help would be taken on board and i hope you soon feel brighter.
woops! Sorry, just re read your post and ‘fuzzy’ head not back!!Long may it stay that way, can i also just say mum went yesterday to get some Replens (thanx every one!!) and they only had one tube left so thinking of getting some shares in it now!
what’s helped me Dear Morgan and all the other women out there with this problem,
My periods stopped with chemo Jan 2005 and I have been on tamoxifem since May 2005. I’m 40 yrs old. I have been having terrible problems with vaginal dryness and soreness and painful sex.
It has been realy helpful to read everyones’ stories and suggestions.
I am using replens every 3 days or so plus loads of lubrication when we have sex. The other thing that really seems to have helped is changing position so I am now on top. Sex is now almost free of discomfort and therefore we are doing it more often. It also seems to be better each time we do it - perhaps there is some stretching going on or else it’s pyschological now I know it won’t be painful.
Why is it that when I have these problems and mention them to my GP (and even the Onc) I am made to feel that I am the only one in the world who has this symptom? Thank goodness for the forums!
Like the rest of you I have tried Sylk, Replens - you name it, but none of it was enough. I got a prescription for Vagifem pessaries but was so worried - despite being told that it was topical and wouldn’t affect me - that I kept them in my drawer for months. I have now decided that as I am already terminal, I might as well just go for it as I got so fed up with things as they were. I know that I might have worsened my risk but I think that I made my choice and I am going to live it that choice (yes I said ‘live’!). I know that is isn’t everyone’s choice and that I am not in the same position as many of you, but I am just not into ‘skinning cats’!
Thank God Hi Girls,
It has been awhile since I posted, But thank god for this thread, have been putting up with recurring thrush, and vaginal dryness since chemo. summer 2005. Started tamoxifen Nov.05. 2006 was a nightmare, trying to find alternatives, and cures. Have canestan on repeat perscription as I needed it every week. 2007 has started better, had just discovered Sylk, so things are looking up. Had been using Actigel, from Boots it is aloe vera based, and it stings slightly when you apply, but it clashed terribly when I had thrush.
Had never heard of replens so will look into that. You have given me hope and maybe I wont have to keep ordering the pessary’s.
Thank you again for the info.
Take Care
Karenanne:-)
Can l join club!!! Have posted before about my side effects from tamoxifen but today thought l would as feeling very sorry for myself!! 2 days post thrush treatment for millionth time its back Again. Feel so sore-am sitting on towel wrapped round bag ice to try to soothe it!!!Hope we dont get visitors!!! Seems unfair that we dont just get breast cancer but all baggage that comes with it! Lost 5 front teeth in one session due to chemo weakening my crowns.Night is fun-sling my 2 false boobs onto the bedside table-followed by dentures glasses -at one time wig and reach for the replens or canasten!!! memo to self-hang on to sense of humour at all costs!!!
love to all fellow sufferers x
I noticed from an earlier posting that you were going to make enquiries about a Replens cleansing bar. I have just started using Replens (second day) and wondered if such a bar was available.
Hurrah for Replens!!! After suffering for some time with soreness and discomfort down below, I have now discovered Replens (following all the kind ladies suggestions)! I have only used it for three days so far but the relief is fantastic. What a difference.
For any of you who might consider Replens, would advise you to get a prescription - it’s £3 dearer over the counter!!
chemo and painful sex I was so glad to read your post on painful sex and chemo, I thought it was just me!! I am on FEC, nearing my last treatment and to be honest sex has now become a thing of the past as the last time was so painful it has put me off, even though I have bought some KY, I haven’t had the courage to try again yet! I too really miss it as it is such an intimate and loving experience normally. Having read all the posts I will discuss it with my chemo nurse when I attend the hospital for my last treatment and see if I can get help. Thanks again to all for the info, its nice to know I am not a freak.
Sore Vag - Update!! Dear Rowena and all the other lovely ladies who’ve responded to my intial thread! I’ve not logged on for a while and can’t believe the response to this painful, emotive and dare I say secret subject. I say secret as no one talks about it or tells you about it…but it’s not only b painful it’s b important!
I would like to suggest that this topic is included in a suitable forum/weekend/education day (s) run by BCC. I attended the younger women’s forum and can’t remember much attention being given to this subject - nor any possible solutions. Forewarned is forearmed I say. I only thought it’d be a ‘dry vag’ which I thought in the grand scheme of things was ok as ‘a bit of ky’ woud sort out!!
If it weren’t for this site, I’d be completely in the dark about my options and where to turn to.
In response to some of the other postings re recurrent thrush I have a couple of suggestions that might be worth pursuing.
As I had bad thrush concurrently, GP first gave me oral tablets, then gave another course or tables to be used with pessary AND cream - hit hard he said! This is unfortunately a common occurence he said - he also did a vaginal ph swab to check if that was causing me to be more prone to thrush (test was normal btw). Also he’s given me an emergency course in case it starts up again.
I used milk and a milk and cream mixture (all organic!!) to bath my vagina. The outside only. It didn’t sting at all and really helped soothe the both the itch and scratch for a time. More practical in the home and use with loo paper after going to the toilet.
Try and keep your knickers off (if in doors as b-cold out there today!). I used to wear PJs in bed, but now just wear the top to keep cool
Thanks too Rowena about the ‘on top’ position - I do feel that when I do have sex (hmmm let me see - 3 times last month!) I feel as though I’m going to tear. Sorry to be so graphic but will try a new position seeing as we are into a new month (woopee!).