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Tamoxifen & Sex Drive???

lbaines
Posts: 3
Joined: Aug 2008

Hello Everyone,

My intent is not to offend anyone. I take this as a prevention. My pregnant sister and mom were told they had cancer 2 years ago. I was going in for my first mamagram and they thought they saw something and because of the history that just popped up in my family they deem me as high risk. After taking it for one year it agrivated my fibriods and tumors on my uteris and they needed to be removed. My sex drive was dieing before that and I now have to make an effort in my head to ensure my husband is taken care of. He is not complaining but I honestly do not think about it. I hate feeling that way and do not know what to do. The doctors offer no help for this. Sure my choice is cancer or a sex drive. I keep taking the meds but my goodness. I am sure this does not sound like a big problem to most but keeping my husband satified is important also. P.S. It also takes me forever to get in the mood.

Let me also say this is nothing compaired to what everyone else is going through. I know I am blessed. Thanks for listening.

zahalene's picture
zahalene
Posts: 680
Joined: Nov 2005

lbaines, first of all, NOTHING about our cancer experience is unimportant. It all needs to be addressed and dealt with in order for us to build a new normal which will make our lives after the fact as rich and full as they can possibly be.
I lost both breasts at different times between the ages of 38 and 40. Add on the chemo, rads, tamoxifen, and well, my sex drive was history. And I was married.
But what came to happen for me was a deep feeling of satisfaction and fulfillment just in knowing that I could meet my husband's needs apart from what my own body was telling me. Sort of a 'mental high'.
Sometimes you have to take lemons and make lemonade....and use extra sugar.

lbaines
Posts: 3
Joined: Aug 2008

Thanks for responding and BOY am I willing to make lemon aid but with no drive I am not sure how to get there. I pray that all is well with you.

Jane 6756
Posts: 2
Joined: Nov 2011

It's November 2011 and I've just found this site, your post and others' posts. How are you going? I just posted at the end of the posts and I sound like a bitter lemon. I am. And I don't want to make lemonade, I want my libido back.

Eil4186's picture
Eil4186
Posts: 967
Joined: Dec 2007

This is a very important and frustrating issue. I too have noticed that my sex drive has all but disappeared since starting tamoxifen. I am not sure if this is listed as a side effect for the drug, but it is definitely real. You are right, we have to weigh the possible good the drug can do for us against the side effects. I have more than 3 years to go on this drug(unless I become menopausal which carries the same side effect...). I would be way too embarrassed to bring this up with my doctor. So, I'm not sure what to do about this problem. The mind is very powerful---maybe we can train our minds to control our bodies. Good luck with this. If you have any good ideas let us know. Eileen

lbaines
Posts: 3
Joined: Aug 2008

I think it needs to be the first side affect they list. It is crazy! How do I tell my husband that forplay really needs to last a long time to get me started. Normally when a car will not start you trade it in for a new one. Well, I will keep searching. Thanks and be Blessed.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I am just starting my treatment for Uterine Papillary Serous Carcinoma, with my surgery 2 weeks behind me, and radiation and chemo to start in another 2 weeks (after my body heals from the surgery). Already I am mourning the loss of my sexuality, which was always such a big part of my life and my marriage. My husband says he would gladly trade 'no sex for life' for me to live. But it's one more side affect no one talks about.

tasha_111's picture
tasha_111
Posts: 2049
Joined: Oct 2008

Wow. So it isn't just me? Thank heavens I found this site, I was feeling like a total freak. My husband is NOT so understanding, think yourself lucky. When I found myself unable to "perform" half way through chemo, he accused me of having affairs with all of the neighbours (none of whom I even know) and walked out on me. He eventually returned, but the damage was done. I am of very low self esteem now and feel as if I HAVE to do certain things in order to stop him repeating his behaviour, even though I really hate it sometimes.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I'm so sorry that he's treated you that way. (I had to delete the first 5 things I called him when I started typing this post!) You have every right to feel betrayed! Cancer recovery is a long journey and you need someone beside you who loves you unconditionally, and understands that some days it will be all you can do to raise your head off the pillow. Do you have family nearby or a close girlfriend or someone else that can be that 'steady rock' for you to cling to? Or do you have access to counseling? (& could you get him to go to counseling with you?) Perhaps you can confide in someone who can talk to your husband and help him accept this temporary change in your libido (maybe his brother if he has one or a mutual close male friend?). You'll have to choose very carefully who you bring in to advocate for you with your husband, as I imagine he will think this is "nobody's business but ours". (((((((Tasha))))))) big hug.

tasha_111's picture
tasha_111
Posts: 2049
Joined: Oct 2008

Thank you, it is hard when you are in a strange country to make friends. But I have done, he hates her, BUT Cheryl has been my Rock, Even to the point of "lending me her husband" for domestic tasks. (she refers to him as "our husband") Chuck and I are still together and still trying to work things out, we are in therapy now, but well, I dunno, has there been too much water under the bridge?.... I still have hope, I still love Chuck (why?) But thanks for your message, It meant a hell of a lot to me.........thank u...julia

Eil4186's picture
Eil4186
Posts: 967
Joined: Dec 2007

That *****! Chemo is so awful to go through, I can't imagine being treated so horribly by someone who supposedly loves me during a thing like that. I have basically become cellibate since my treatment and my husband has not complained once. He loves me and just doesn't care. I would love to tell your husband what I think of him. He should pray that he never has to endure cancer. What a selfish, immature idiot.....

tasha_111's picture
tasha_111
Posts: 2049
Joined: Oct 2008

Wow has this been hell on wheels.......My best friend has told me to do what is best for ME..... not for US........I am just not that sort of person, I always consider US......More fool me eh? I am just about at the end of my teather here....He has banged on about sex all day today,.....Am I normal or as he calls me "a freak" to not be able to do this just now?
What is normal? He screamed at me last night and called me a PRUDE!........As well as a load of other nasty names,,,,,,,,,,,,,Is this the end? how do I get through to him?... Sorry to be a pain, but desperate here Thanks jULIA

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

This is abuse, you dear thing. Name-calling?? NO way. That is simply unacceptable. You deserve so much better. Anyone does. I'm not one to butt in, but you are asking us. Can you talk to your oncology nurse or patient advocate about this? She may be able to make some connections for you to get you into a shelter. (((((Julia))))))). A man so uncaring that he would verbally abuse a women taking chemo might even physically assault her given any provocation at all. Don't waste your love on the unworthy. (((((Julia))))))

youngandfighting
Posts: 2
Joined: Sep 2011

Hello. Im 25 years old and recently underwent a partial mastectomy and am waiting to undergo radiation as well as genetic testing. If the test comes back positive I face loosing both my breasts as well as my ovaries. My oncologist put me on tamoxifen but I have not taken it yet as everywhere I read there are numerous side effects and some to me are not worth the risk. I do not have a good understanding of everything but I do know I am 25 years old and do not want to go thru any side effects of menopause but mostly its loosing my sex drive that bothers me. I dont know what to do and am feeling very over whelmed. I understand my risks of the cancer reoccurring but as things stand right now, I already run a huge risk for this and they already have told me that if the genetic test comes back positive I am loosing everything so what then is the point to taking this pill? =( I am very confused.

tears2overcome
Posts: 98
Joined: Jan 2010

I feel for all you ladies. 2 yrs ago had hestertomy , chemo and yes reoccurance and chemo again. U wouldn't believe this but I woke from surgery that day and wanted sex. I did however lose any signs of wanting( desires) this second time around, I just dont' feel any excitement like I used to. My Doc told me it's mental more than anything. Im embarrased due to my scars, and feel so out of it physcially. I struggled with who would want me, bald scars and unable to do as i used to. I didn't want to kiss I had dry mouth so bad the sides of my mouth was cracked and bled, I could barely carry on conversation my mouth would dry up, so with all this I felt icky, worthless as a woman. My doc told me not to put pressure on myself during chemo have enough going on and sometimes it will take a few months when done for all pleasures to resume. I have yet to feel any strong desires, except the other day I am sure I felt a twinge of something.... This begins with us not putting pressure on ourselves and taking it slow. Gosh ladies I was like you , loved the thot of making love, made me very expressive, now i wonder if i'll ever feel that again. I will take it one day at a time, no stress and build back some self esteem. Blessings... Brenda

Paige Ann
Posts: 1
Joined: Oct 2011

I have read everything that everyone has posted about sex drive, and I have to say that I feel the same way. The thing is that when I am having sex with my husband it actually hurts to do so, it's not so much that my drive is gone, but it hurts. I did some research on tamoxifen, but the only thing I could find is that effects mem's sex drive. I just started the Tamoxifen back in March 2011, and I am still getting Herceptin every three weeks. Luckly my life is very busy with four kids, that most nights my husband is asleep before me. I haven't told him yet, how I feel. He is very understanding. Not sure what to do my self, that's why I started to do more research and found this page and all your posts.

deborahmuriel
Posts: 1
Joined: Oct 2011

I'm four and a half years through my 5 years on tamoxifen, and I can't wait to stop. The side effects - most of which doctors deny - are getting too much. Painful feet that stop me walking very far, constipation, dry hair, weight gain, hot flushes - and barely any sex drive. I was referred to sex therapy which helped a bit, particularly with my body image issues (difficult to feel sexy with only one breast), but it did nothing for the physical problems of dryness and pain. I find a good organic lubricant helps, and I just put up with the discomfort because I can still have a small orgasm and still feel close to my partner.

I'm hoping it will all get better in six months, but at the age of 52, I'm bound to have had my menopause in the intervening 5 years.

But it's so easy to be negative - let's all cheer the fact that we're still alive!

Jane 6756
Posts: 2
Joined: Nov 2011

Yes, it's always the same sense isn't it? We're so lucky to be alive that it seems almost mean-spirited to carp about the facets of us, the parts of our lives that didn't survive the treatment of cancer.

Even more trivial when we lament the loss of libido. As far as I'm concerned my loss of libido means that only a facsimile of my former self survived cancer. I can take the pain in my breast, armpit and arm. I can handle the fatigue. But I now realise that I cannot tolerate being an asexual being. My partner and I used to have wonderful, joyous, exhilarating sex. Now we have sex and I'm planning what to wear the next day when I go to a meeting. I feel like a cross between a six year old girl or a ninety-nine year old woman. I must be a bit slow on the uptake because it's taken me about four years to face all this. Initially I just thought: this is post-cancer, all will be well when I finish chemo, or radiation or whatever. Now I know it will never be better. I've been de-sexed. Neutered. I've read the posts about how wonderful it is to satisfy one's husband without feeling desire and without feeling orgasmic pleasure. My husband never needed or wanted sex as much as I did prior to my breast cancer. Now I feel resentful that he desires me and I can't reciprocate. I haven't told him the whole truth. Just that my libido had diminished somewhat. I think he was almost relieved.

If this is it, if I have to stare into the dark abyss of a future without any interest in the lifegiving force of sex, I can't cheer the fact that I'm still alive. Sounds petty and ungrateful? Perhaps it is. But I'm not still alive. Whoever is walking around with my name and in my body, she isn't me. She's a very shoddy version of me.

Yes, I do have lots of things in my life besides my libidinous urge. And no, nothing compensates for its loss. It really annoys me that all the literature and so-called support groups operate on that pretext: don't complain about loss of libido, you haven't lost your life. At the risk of being far too repetitive, life is not only about being able to breathe in and out. I lost my life and the one I now have is not even one-dimensional.

busby2301
Posts: 1
Joined: Dec 2011

I have found comfort over the course of the last year in just "knowing" i am not the only one and i am not crazy.....I have always had a problem with my sex drive but after i had been on the tamoxifan for about 4 months i REALLY have a problem now. I too suffer with all these side effects and yes i dont feel confident. My husband says its because i dont try and because of the issues i had before the cancer and radiationa and now the chemo he feels i am using it as a crutch...he hasnt said it in so many words but i feel it. thank you to all who have shared their stories because i too am right there. I know its time to let my husband go and i know i am being selfish but i love him...prayers sent for all of you.

Hondo's picture
Hondo
Posts: 5887
Joined: Apr 2009

Radiation & Chemo will kill the sex drive in any Men or Women, I was an Alpha Male give it to me every night before I go to sleep dear. But now after treatment I find that sex does not interest me anymore, I much rather go to sleep then have sex. My wife who never was big on sex anyway if now relieved of the pressure we men put on women. I am just sorry it took having cancer for me to realize it is not all about sex. Now I rather just lay there with her and hold her while I go to sleep.

Cancer destroys so much of us and people who don’t have cancer just can’t understand what a change it makes to us on the inside.

Wishing you all the best in health
Hondo

nokomarie
Posts: 3
Joined: Mar 2012

I just found this site today and wish I had found it almost 5 years ago when I started taking tamoxifen. With only one month left to go I am praying that all of these crazy side effects leave with the drug.

Not sure if the tamo caused menopause or if they just decided to occur simultaneously, but it has not been an enjoyable ride. My complaints started at my regular physicians office. Told him I was unbelievably tired, my libido was DEAD and the hot flashes almost too much to bear. He told me not to worry about it, it was probably just the tamoxifen. I was put on Effexor XR for the hot flashes and it has helped somewhat. The rest has been ignored even though I have brought it up repeatedly.

The weight gain, fatigue, loss of any sexual desire and feeling like I didn't even know who I was is so hard to explain to anyone.

I finally went to see a counselor and for the first time in almost 5 years I had some hope. I took my husband with me to see the counselor and she explained to him (and me for that matter) what was actually going on with the tamoxifen and that I should start to regain myself when I finally stop taking it.

There is so very much in my life to be thankful for and right now I am most thankful that this will be over soon!

It would be so nice if CSN would bring it to the attention of medical practitioners that this site was available. It would probably make it a little more tolerable for everyone that has to go through this experience.

Thanks for sharing your story, Jane, and I hope that you are doing well.

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