Well hang on to you eyeballs ladies because I am going to ask this question on a just wondering basis, if I can’t ask it here and hopefully get some good replies I’m not sure where?
When I started taking Tamoxifen I’m not sure I read in the instructions anywhere and especially under side effects that, your yep get ready for it, that your clitoris would shrink away to nothing. I can’t beleive I am typing this but yes it has happened! Now don’t all rush off and have a look! My friends and I have a laugh about it but they have not have the treatment I have had and I know plenty of you have and maybe just one of you have the same as me or am I the only one?
I remember reading a funny post from someone about feeling like a virgin again with the added benefit of cement shoved up there for good measure. I laughed like a drain, she put it better than me and at the time I could hardly move from one room to another from the chemo. I thought gee whizz that girl has got my sense of humour and I thank her for that belly laugh I needed it and she was right, ouch!. Anyway getting side tracked now so yes please don’t let me be the only one, I will look forward to your posts. Keep smiling.
Thanks for making me laugh for the first time today I’m afraid I can’t comment on the issue itself as I only started on Tamoxifen last week. Best Wishes to all. LooLoo x
omg the joys of all this treatment ! Wish I had read your post before I went out this morning as my doc spent half an hour trying to locate the strings of my coil to remove it(gota go back in 2 weeks as it was playing hide n seek) and could have taken some measurements while my legs were akimbo…am taking my first tamoxifen tablet tonight !
Will await further posts with interest !
Not noticed that yet… but i’ve got a good side effect for you… (oh the things we share on here… lol)
I have IBC so had to have my 6 months of chemo before i had my masectomy… during that time both nipples started to first turn brown and then black… i mentioned it to my onc and she said she had never seen anything like it, neither had the surgeon (and let’s just say he is not a spring chick…) i asked what was going to happen and they said they had no idea…
Well left nipple obviously went with the masectomy… and right nipple? It fell off!!! :o Honestly… :o
Thanks for your replies but it is looking like that I am the only one here on this forum with a shrinking violet?! I started Tomoxifen on 8th Oct 08 Vodka and who’s to know if it will ever return, it was a case of one minute it was there and then the next bingo, it was gone. I have googled it and I have found some others, hooray, god knows what my history tab looks like!
Poor Sandra I believe those strings are slippery little suckers I hope they are located on your next visit.
Rhapsodyangel blimey poor you that is a first one on me, all these Doc’s have a brilliant habit of just leaving those little juicy bits out don’t they, you have to extract the info out of them if you want to know anything I have found. I too had my chemo first but my nipples seemed to stay the same.
Glad I made you laugh LooLoo.
omg THATS HORRIFIC!!! Im going to go and check mine now lol! I had no idear that this was a side effect of tamoxifen! how i loath but love this damn drug lol!
well i think tamoxifen shrinks all ya bits, i,m pleased cause mine,s probably the size of everyone elses now lol,go and have a look you might be suprised lol
seen as we on the conversation of bits and bobs including shrinking violets can anyone tell me if they experience pain while and after doin it! Its just that i’m suffering with stomach pain after for abot 48 hours. Never had this pain b4 and don;t know if its the lovely tomaxifen causing it. I’m not dry - far from it but i have lower tummy pain?
Ok Gilly, you’re not alone. I’m 49, I was dx Oct, 2.6cm invasive, 10/18 nodes affected. WLE and node clearance in Nov, then re-excision to get clear margins which was successful. Chemo was 3xFEC and 3xTAX - last one tomorrow then 15 RADS then Tamoxifen. My violet hasn’t just shrunk, it’s nowhere to be seen! I hadn’t noticed as the chemo has completely killed off my libido and I was kind of aware that things weren’t quite the same as before, but until I came across your post, really wasn’t aware. OMG -where’s it gone!!! I knew about losing the hair, poss nails as well with TAX but this was NEVER mentioned! Worrying thing is, I haven’t even started Tamoxifen yet - what will happen when I do - my bits just shrivel and close up!!! Oh dear, I’m trying v hard to see funny side of this, struggling tho… Pat x
PS Gilly, I hope this isn’t an April Fool’s joke, as if it is, the jokes on me!!! x
I can assure you all this is not an April fool, this has happened to me. Sukes I can almost feel where you are coming from, sorry excuse the pun but yes I can confirm that for me it does hurt like hell but mine is sadly a dry issue and apart from walking around like John Wayne for a day or so from discomfort I don’t however have stomach pain I would ask you Doc about that one. I can say though that I have tried the Replens but with not being too base it is like walking around with wet pants on and your suppose to use it 3 times a week and it has Paraben’s in it so no thanks. However I can recommend Sylk lube it is very good and feels quite natural. The days have gone of a quick one I’m affraid! That, I have to say is a real bummer because I did have quite a high libido but I would say it is pretty much gone, thankfully my old man is very understanding and just seems to be in the shower longer these days!
Pat I hope your last Tax goes ok I found I lost my nails about a month after finishing it, it is good stuff but for me was real hell as well, I am back to almost myself apart from the battle scar and a few niggly bits, keep plodding on you are nearly there
I emailed Macmillan to ask about this very same thing & got referred to this forum.Thank goodness! I feel like an absolute freak!
breast cancer & its treatment really is ‘the gift that keeps giving’,or in this case,taking away!
wouldnt mind if it was losing my hairy legs or the excess weight l’ve piled on
lve been on tamoxifen since May last year & if this is how it’s going to be l may well ask to come off it
There is l’m sure many more women with this problem, (& yes, it is a problem!) but maybe they’re too embarrassed to ask about it.
l’m really hacked off because l haven’t lost my libido just really struggle to orgasm .l know some men have difficulty finding the clitoris but when you’re struggling to find your own it’s just not on!
I’ve litterally just been to the bath room and thought what the hell is going on!! Ran to the bedroom telling my partner my clit has gone. He lay there laughing saying it can’t just disappear. It has completely gone. So I’ve just googled it and here I am not alone!!! Wtf!! As if we haven’t all been through enough… No boob and now no clit fecking fantastic ?
Thank you for getting this thread going again. I battled for 10 years to stay on HRT exactly to hang on to my clitoris, but had to come off once diagnosed. I’m not taking Tamoxifen, but maybe should be… So far continuing to orgasm, but if it gets difficult I think I’ll ask for topical oestrogen cream to encourage the little bud to hang around a bit longer, anyone tried this?
I went to my GP yesterday & she was really sympathetic. Said she’d never come across this but has written to my oncologist to see what if anything he knows or if he can change my meds. Macmillan had no ‘evidence’ of this but referred me to this forum & guess what? It was first raised on here in 2009!!! 6 years before my diagnosis!
l know it’s not exactly something that comes up in everyday conversation but for god’s sake, if there was a drug that had a side effect that shrunk a penis the whole damn world would know about it!
l really think this should be reported to the Drug agencies because even if it’s a rare side effect women should be told
I’m afraid I can’t comment on the issue itself as I only started on Tamoxifen last week. Best Wishes to all. LooLoo x