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Tamoxifen, shrinking violet!!!!!

25 REPLIES 25
Not the only one
Member

Re: Tamoxifen, shrinking violet!!!!!

He never actually named the alternative just said there was one but would cause joint pain, so not much help l'm afraid ☹️ We will get through this! I know my posts may come across as l'm struggling but l'm not, you wouldn't believe the ridiculous things that make me laugh,every day, (maybe l'm hysterical?!)

My approach is definitely one day at a time & take as much control over my treatment as l can because at the end of the day l figure it's my body, my choice

 

Hang in there 😉

Charys
Community Champion

Re: Tamoxifen, shrinking violet!!!!!

Gosh, I've just read back my previous reply, and I sound like a ranting mad woman lol The alternative I was offered was the Zoladex and letrozole. However, here's the problem, that would be an instant menopause type thing too, and in that case I wouldn't have the option of withdrawing from it if I get to a critical point in terms of mental health. Is there another tablet you are offered as alternative to tamoxifen? My GP is currently contacting the onc. for advice, but she's not a terribly 'giving' person and seems to think 'one size fits all'. It does feel a horrible catch 22 for sure. 

Not the only one
Member

Re: Tamoxifen, shrinking violet!!!!!

So sorry to hear that Charys. Is there no alternative to Tamoxifen for you? At my check ups with the oncologist

(last one was prior to me discovering my loss!) l was always asked how l was coping on it, offerred anti depressants for the hot flushes (no thank you😬) & told l could have an alternative , but it would likely give me joint pains, so l opted to stay on it. That may well change now, honestly you're damned if you do, damned if you don't sometimes

Charys
Community Champion

Re: Tamoxifen, shrinking violet!!!!!

Yes!!!! A number of people, who have no experience of the hideous and torturous nature of the aforementioned drug ( lots of people are totally fine on it , just to not stress everyone, but it appears I am an unlucky one.....mind having had a hormonal psychosis after giving birth, that resulted in a year hospitalisation, what could possibly go wrong with a chemical type of instant menopause?) say to me that it's better to just 'keep taking it' and 'surely I don't want a recurrence' and other helpful comments. I can honestly say that it felt as if day by day my mind and body were being poisoned and everything was being taken me, all essence of life quality . I am terrified of a recurrence, totally terrified, do people think I want a huge list of side effects that make me so ill? No, I'd rather be fine like others and be able to take it. Saying that, I've gotta restart it next week :0((((

Not the only one
Member

Re: Tamoxifen, shrinking violet!!!!!

Ha ha ha, me too! Always from someone who,s not actually been on Tamoxifen, just keep taking the tablets eh? 🤓😇😉
Runningfree
Member

Re: Tamoxifen, shrinking violet!!!!!

I keep hearing it should get better!!!!!

😅😅

Charys
Community Champion

Re: Tamoxifen, shrinking violet!!!!!

blinking eck!!!! This is somewhat.....err.....concerning ( and depressing). As someone who has had a gutful of tamoxifen side effects, after only 6 weeks, and the misery that made life not worth living ( yerrrrssss I am meant to be restarting it next week :0( ) to hear that odd things can happen like this is even worse. Mind, seeing as my side effects made me unable to function on any basic level, then sex wasn't on the menu anyway. 

Not the only one
Member

Re: Tamoxifen, shrinking violet!!!!!

Same here & thanks for the support, a study in Germany has concluded women who expect the worse from Tamoxifen have more side effects, what a load of codswallop! I've been really fortunate compared to some, my cancer was caught early , l went through the radiotherapy well & apart from hitting the menopause with a vengeance,sticky eyes, weight gain & lightheadedness (did l say fortunate?? ha ha) so l really was clued up & expected no real dramas,,,,,,,,,,

THIS however, was never brought up. Like l said , if it was shrinking a man's penis then l'm damn sure they wouldn't be fobbed off with its all in the mind!

Here's hoping my GP & oncologist can do something 

Runningfree
Member

Re: Tamoxifen, shrinking violet!!!!!

Dear Not the only one,

I have just come off a thread about Tamoxifen SE being possibly a case of mind over matter! I THINK NOT!

saw this post last night and went straight off to reevaluate mine, not convinced it isn't slightly smaller... Still working ok but will obviously monitor with interest.........!!!

been on Tamoxifen since April and SO not a fan but like pretty much all of us trying to ba responsible

just wanted to offer my best wishes and to reiterate how medics seem to belittle SE of this drug

Not the only one
Member

Re: Tamoxifen, shrinking violet!!!!!

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

Caroluna
Member

Re: Tamoxifen, shrinking violet!!!!!

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?

Misstee
Member

Re: Tamoxifen, shrinking violet!!!!!

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 😩
Not the only one
Member

Re: Tamoxifen, shrinking violet!!!!!

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!

Anyone asked their oncologist about this?

Guest user
Not applicable

Re: Tamoxifen, shrinking violet!!!!!

Hi,

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 😉

Best wishes

Gilly xx

cass141
Member

Re: Tamoxifen, shrinking violet!!!!!

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

Guest user
Not applicable

Re: Tamoxifen, shrinking violet!!!!!

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?

Please advise
sukes

mairead
Member

Re: Tamoxifen, shrinking violet!!!!!

i hope so sukes! x

Guest user
Not applicable

Re: Tamoxifen, shrinking violet!!!!!

is this an april fool joke

Guest user
Not applicable

Re: Tamoxifen, shrinking violet!!!!!

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

mairead
Member

Re: Tamoxifen, shrinking violet!!!!!

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!

emily xx

Guest user
Not applicable

Re: Tamoxifen, shrinking violet!!!!!

Hi All

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.

Best wishes

Gilly xx 🙂

Guest user
Not applicable

Re: Tamoxifen, shrinking violet!!!!!

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!!! 😮 Honestly... 😮

Anyone else heard of this happening to people...?

Guest user
Not applicable

Re: Tamoxifen, shrinking violet!!!!!

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 !

Sandra x

Vodka
Member

Re: Tamoxifen, shrinking violet!!!!!

Hi gillysmiff

sorry about your problem. I'll have to ask my oh about my clit!

How long have you been on tamoxifen and does it say if it will.......well eh gow back to normal?

xx

Guest user
Not applicable

Re: Tamoxifen, shrinking violet!!!!!

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

Guest user
Not applicable

Tamoxifen, shrinking violet!!!!!

Hi,

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.

Gilly xx