End of the rope tonight

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deliciae
deliciae Member Posts: 12
edited June 2014 in Mental Health: Because Cancer Doesn't Just Affect Your Breasts

*graphic discussion*

 I'm 5 months out from the end of my 5 year Tamoxifen cycle and I'm sitting here weeping, 42 years old and in menopause and trying to figure out how I am supposed to accept the complete disappearance of my libido...sex with my bf is really painful and I don't enjoy it anymore, and I noticed last night that my clitoris is much smaller than it used to be.  Looked it up tonight to find this in wikipedia:

Atrophic vaginitis (also known as vaginal atrophy or urogenital atrophy) is an inflammation of the vagina (and the outer urinary tract) due to the thinning and shrinking of the tissues, as well as decreased lubrication. This is all due to a lack of the reproductive hormone estrogen.

The most common cause of vaginal atrophy is the decrease in estrogen which happens naturally during perimenopause, and increasingly so in post-menopause. However this condition can sometimes be caused by other circumstances.

The symptoms can include vaginal soreness and itching, as well as painful intercourse, and bleeding after sexual intercourse. The shrinkage of the tissues can be extreme enough to make intercourse impossible.

And now I can't stop crying.  I feel like I have had to accept so many things during this chapter of my life - being bald, getting fat, bearing a huge scar on my breast and having it shrink so that I am now lopsided (don't want to get an implant and my ins co will not pay for a reduction on the other side) - I have really tried to manage all this with a degree of grace and have for the most part been successful with it over the past 4 years and 8 months.  But this, tonight, I can't take. 

I just can't wrap my head around the idea of my pleasure in sex being over for me in this life at age 42.  I feel like I or someone I love a lot has died. I was only 36 when I was diagnosed and so have been in treatment during what is supposed to be my sexual peak years, and now it doesn't seem like I'm ever going to experience the same joy and pleasure I had in the past before this.

My diagnosis brought problems with my then-fiance to a head and we split up right before I started chemo, which wasn't a bad thing. I've got a lovely man in my life now but never had kids and came to accept that maybe I would marry sometime but kids was something I was just never going to experience in this lifetime after chemo & rads but I never thought that I was also going to have to sacrifice all my sexual pleasure as well for the rest of my life.  I thought that after the Tamoxifen it would come back but it doesn't appear that it does or will.  This is too much to take from me too after all the rest of it! 

I was estrogen + so there's no question that my onc will not approve hormone therapy and I am scared to try it even when my Tamoxifen is up in August.

Ugh.  My friends don't get what this is like - they say I should be glad that I am here after what I went through and I AM happy to be alive, I know lots of people who didn't make it.  but I thought I was going through the pain and the bald and the fat so that I could resume my life, not so the best parts of it would just be taken away without even a chance to come to grips with it. 

I'm putting it out there, this is really just about hoping that one of you out there knows how dark this feels and can tell me how to stop crying so I can get to sleep tonight and see my life as something beautiful and amazing like I used to, when so many of the things that made me feel like that in past are gone. I know tomorrow things will be better, it's just a long night ahead of me tonight.

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  • Lynkoura
    Lynkoura Member Posts: 50
    edited April 2011

    Deliciae

    I'm reaching out to you. I understand. I'm still on my first year of tamoxifen but I totally get it and have had similar meltdowns. It is not an easy thing and I'm still struggling to find an acceptable place/level/balance whatever. Don't totally rule out options for improving things. There are other threads where people have tried things including small amounts of estrogen cream. Please PM me if you want. Best wishes Lynkoura.

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  • Juli50
    Juli50 Member Posts: 859
    edited April 2011

    Life is so not fair. Big hugs and I hope it gets better soon.

    Juli

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  • WendyInCalif
    WendyInCalif Member Posts: 172
    edited April 2011

    I feel your pain.  I am 53 and single.  After a life of great sex during my adulthood, I am now complete disinterested.  And since I am alone that is a serious problem as I am not wanting to be - and without a sex drive, unfortunately, I am lackluster when it comes to social events, or caring about the possibility of meeting a man whom I can grow old with.  I am considering my options. ER positive as well. 

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  • debbie6122
    debbie6122 Member Posts: 5,161
    edited April 2011

    Deliciae- Im so sorry you are going through this- Edited and deleted most of my post, will Pm you hope you are doing ok!! Warm hugs,,,,,,,,

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  • hopeful34
    hopeful34 Member Posts: 1,569
    edited April 2011

    deliciae- I am 35.  I was dx'd last year at 34 and my husband and I have only been married 3 years when I was dx'd.  I have a 15 y/o son, but my husband has no kids and wants them desperately, so I feel like I have let him down.  Not only that, but he loved my breasts (sorry if that sounds creepy)...but he did and now they're gone.  Not only that, but I am bald, fat, and sex hurts for me too.  And, I had a great sex life before all of this.  I like you am hoping that four years from now, I will get back to normal.  It must be so discouraging when that doesn't happen.  I wish I had some words of wisdom, but I don't.  Have you talked to your OB/Gyn?  Maybe she can suggest something (estrogen free) that might help.  Have you considered laproscopic surgery?  Have you had a pelvic ultrasound?  I am will be having one soon.  I do know that Tamox. can cause ovarian cysts and endometriosis....which is quite painful.  If that is the problem the gynecologist can do laparoscopic surgery to remove some of the scar tissue etc. and that should help with the pain.  Also, I know you may not want to (nor do I) but, have you asked if a hysterectomy would help with the pain?  Sorry for rambling on, but I am curious as well.  I sure hope you can find some relief and happiness.  You def.  deserve it after dealing with this shitty BC stuff.  Sorry I couldn't be of much help, but if you need to talk you can PM me anytime.  Take Care.  Allison

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  • hopeful34
    hopeful34 Member Posts: 1,569
    edited April 2011

    deliciae- Just checking in to see if you are doing any better.  I hope things start looking up for you soon.  Take Care.  Allison

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  • slousha
    slousha Member Posts: 312
    edited April 2011

     Hi, delicie,

    you have expressed things which all ER+ are coping with. It's really terrible that this healing and up keeping our livings, causes maiming of our soul and body! A friend of mine in similar situation said to me: I'll rather die after DXs, but to live throw this" ....

    However, in some months you will finish this therapy and you are still so young. With some beauty treatment you will look better. Some hormones will certainly come back with time, please,  visit a experienced gynecologist, that will help you with some estrogen cream and take cocoa or olive oil to moist you before making love.

    Finally, you should show understandings to your partner, try him to make happy and you will see - pleasant feelings will come back to you too. (English isn't my native language)

    Best wishes USHA.

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited April 2011

    deliciae - let your med onc know what's going on.  I'm also ER+, but after reviewing my case, my med onc gave me a prescription for an estring.  It's a vaginal estrogen ring.  It's a bit of a calculated risk for ER+ and isn't well studied, but preliminary studies seem to show that the amount of estrogen that crosses the vaginal wall into your system is larger at first,but as the vaginal tissues "plump up" less and less estrogen gets into your system until a couple of months out the levels are about back to where they started.  Think of painting a new wall - when you first put on the primer, you need a couple of gallons of the stuff as the wall just sucks up the primer.  Then you may need only a gallon for the next coat, and by the time you put on your final coat, you're using half a gallon.  The estring has been a lifesaver for me. 

    Also, my med onc gave me a scrip for testosterone patches - I used them 2x a week for several months. And no, I didn't grow a beard or get a deep voice - the dose isn't enough to do that.  But it does give you a bit of a boost in a sex hormone that's not estrogen, and helps light the libido spark just a bit.  Am I a roaring sex tigress now?  No, but I do have some interest and the horrible vaginal atrophy I had is so much better that sex can be enjoyable again.

    Also, do you exercise regularly?  I find that makes such a difference in my attitude and how I feel about myself physically.  There's a thread in the Fitness area called Let's Post Our Daily Exercise.  It's a great group of women - we just post what we've done that day, whether it's walk 10 minutes or run 5 miles.  It's very supportive and we all encourage each other to get out there and do something.

    I know you posted a while ago, and I hope you got a good night's sleep that night and things are starting to look better.  Please post back here and let us know how you're doing.  You're friends may not know what it's like because they haven't been there.  All of us here, on the other hand get it.  We've all been there and we all understand how discouraging it can be.  Hang in there!

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  • thebeckster
    thebeckster Member Posts: 7
    edited April 2011

    Thank you for discussing this.  I have been on the Femara for two years and have the same problem.  Kindof afraid to take the estrogen ring due to the fact I have three more years to go on Femara!  What to do?  At least you are close to the five year mark.  My two year anniversary for my surgery was Good Friday.  People just don't realize how many issues we all have had to deal with....Thanks for all the good info!   God Bless! 

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