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I WANT MY MOJO BACK!

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  • sam52
    sam52 Member Posts: 431
    edited March 2006
    Janis - thanks for your reply. I will google DHEA as you suggest;sounds a little bit scary, though. Did your PCP prescribe it for you...and how long did you take it for?

    My young man is very patient, too. He is the one who is more disappointed than me, if I don't get there.

    Sam
  • Fitztwins
    Fitztwins Member Posts: 144
    edited March 2006
    Janis L, I too have been having problems gettin' there. If you figure it out let me know!

    Janis F
  • tjac477
    tjac477 Member Posts: 2
    edited March 2006
    Let us all know....
    The fish oil pills aren't smelly are they? Do you know if you can take them while on herceptin?
    What is a vibrator glove?
    Tracy
  • shirlr
    shirlr Member Posts: 24
    edited March 2006

    I've tried several brands of fish oil and some do smell and some cause "fishy" burps. The Nature Made brand works well for me. High dose fish oil should not be taken if you're on blood thinning medications or if you are having surgery soon. Tell your doctor you're taking it, they usually want to add it to your file. Fish oil raises dopamine levels in the brain, which improves brain chemistry. I have been able to avoid the depression so many of us have after bc and it does help with sexual functioning. It seems to improve sensation "down there". But you have to take a lot of it to have this effect - twice the dose recommended on the label.

  • ocean
    ocean Member Posts: 1
    edited March 2006

    Alright ladies.... I just found this topic and have been reading for a while. It is sooo reassuring to know that everyone else is having the same problem (well, you know what I mean).I checked out the eroscillator and was shocked at the price. I went to vibeforthecure and saw many options for vibrators. Anyone suggest any particular one?

  • stacey2930
    stacey2930 Member Posts: 14
    edited March 2006

    make sure you get the clitoris attachment that fits on the vibrator!!! It will send you to the moon honey promise!

  • stacey2930
    stacey2930 Member Posts: 14
    edited March 2006

    make sure you get the clitoris attachment that fits on the vibrator!!! It will send you to the moon honey I promise!

  • jaybird627
    jaybird627 Member Posts: 1,227
    edited March 2006
    Ladies, I still have problems but try not to focus on it. Maybe I'm in denial? :-/

    It seems once a week perhaps I get horny but not always. My o's have gotten better but I'm not sure if it's just further distance from tx or my attitude or my supplements or a combination of all.

    I got my testosterone test back and it was 40. I'm going to stay on the DHEA (I only take 10mg/day) as I see no harm, not at this time anyway. I take fish oil, too, but only one capsule/day. I also take a lot of other supplements but nothing new since my BC dx.

    I so wish I had my desire back but I have to admit that my young man does turn me on a lot (I'm sure it's mostly mental) so when I see him I do get excited but when he's not around I couldn't care less about getting laid and that bothers me as I thought about it 24/7 before BC. I wish I could figure out what exactly has zapped my sex drive. I do blame the Tamoxifen the most but cannot prove that it's the culprit.

    I have frequent sex dreams. I used to only have them when I wasn't sexually active for a while but now I have them 2-3 times a week. It's all just so weird. I'm trying to convince my body that I DO have the desire but the o's are still ellusive more often than not.

    Sorry I have no solution, only sympathy and empathy. I can recommend the eroscilator, though. Whatever helps, right?

    Good luck to all of us!

    Janis L

    p.s. to Janis F: didn't you buy an eroscilator?
  • Fitztwins
    Fitztwins Member Posts: 144
    edited March 2006
    I did! But the dang thing has not produced the desired results...if I wasn't married I would snag me a young man. Actually my DH is trying to help. I just don't know what to do. My breast were a big part of my 'O' and now I don't like them touched. TMI? Because one is real and the other fake, it is a turn off.

    Some day....the hyster. affected me a lot. I actually had a few O's before it/after chemo.

    Janis
    sigh.
  • jaybird627
    jaybird627 Member Posts: 1,227
    edited March 2006
    (((Janis))) Shit! I swear, it's all about estrogen. Well, keep trying is all I can suggest. Even with a younger man it isn't all perfect. I, too, used to get a lot of pleasure from my breasts an even though I still have both of them the sensations are just not the same as they were before. I know it's not all in my head and that hormones (or lack thereof) have a lot to do with it. Hang in there!

    Janis L
  • Fitztwins
    Fitztwins Member Posts: 144
    edited March 2006

    I wonder how much of it is mental? I was thinking of renting some good p*rn. Do you think they have BC survivor p*rn? LMAO!!!

  • jaybird627
    jaybird627 Member Posts: 1,227
    edited March 2006
    Janis, funny (not!) that you should mention porn as my last conversation with my onc she mention that. She said we (post-meno) need more time to get going/get there and that our partners would have to help us by being more patient and more attentive and that porn could actually help.

    Now, being the crazy person that I am I have watched a lot of porn and I have to say that you can't help but get excited. It just triggers something (???) in you brain. So, I say check it out. There are some 'nicer' adult stores around and they rent all sorts of stuff and you don't have to buy it but I'm sure you could find a site on-line and get it that way if that would make you feel more comfortable. There is a production company, Candida I think or something like that, that caters to women, meaning there's more of a story/plot line than not. An ex-porn star started her own production company and I've seen some of them but again it's been years. I think I just might get my young man to watch with me now that you brought this up!

    Happy viewing!

    Janis L
  • Fitztwins
    Fitztwins Member Posts: 144
    edited March 2006
    Hee hee...I couldn't imagine talking with my Oncologist about this (think 60 year old grandpa type)...

    Maybe Netflix? has soft stuff. Gosh I hope my mom doesn't read this site!
  • shirlr
    shirlr Member Posts: 24
    edited March 2006
    I highly recommend you guys give the high dose fish oil and the Arginmax a try. It's all natural, won't hurt you, and it does help.

    For first time vibrator users, I'll tell you what I did. We have Lover's Package stores here that cater to couples, they're nice, mainstream, retail outlets in nice neighborhoods. The people there are trained to help with purchases and you can try out a vibrator (on your hand, of course!) before you buy to see if the strenght, sound, feel, etc., is right for you. I found that telling them I am a bc survivor really helped me get over my embarrasement. Hey, we've got to do what it takes, right?
  • SpanArtist
    SpanArtist Member Posts: 38
    edited March 2006
    Hi all,

    I own both the Erosillator and a Hitachi Magic Wand and in my experience, the Wand is more powerful and therefore, (for me) more effective. The Wand costs about $50, so it's also cheaper than the Erosillator.

    I think the problems we all have are due to lack of estrogen. I'm 54 now, but had a partial hysterectomy when I was 34 (but kept my ovaries). Even with my ovaries intact, I noticed a decline at that time (some dryness, weakening orgasms), so I started on HRT when I was 44 (it was Estrogen and Testosterone). It helped and I took it until I was dx w/ BC in 10/04. Now after treatment, the decline is severe and very distressing to me!! Even my Wand is just kind of minimally effective! Of course, I'm so disheartened by all of this (not to mention my libido is strictly mental these days...it's like my mind and my body are disconnected) that my partner and I haven't resumed our sex life to speak of...and I HATE THAT!!!

    Are there any of you who are ER- who are having severe problems in this dept?

    Mena, you out there? How goes it?

    Hugs, Liza

    PS: Since even my Wand is not always doing the trick these days, I'm thinking maybe something more powerful...let's see now, what's left...a jack hammer? LOL!

    SOMEBODY DISCOVER SOMETHING THAT WILL HELP US!!!!!!!!!!
    I'm keeping my eye on PT-141, a new drug in trials. Read about it here:
    http://www.palatin.com/default.asp
  • shirlr
    shirlr Member Posts: 24
    edited March 2006
    Hi Liza:
    I've been watching PT-141 too. It sounds encouraging. I'm 52 and it's been 3 years this month since my dx. I know what you're going through, I have the "mind/body disconnect" too. I want to give you some encouragement to resume your sex life. I've come to the conclusion that what I have now is the "new normal", I'm not the girl I used to be but I'm determined to have a good sex life... and we're making it work. I've been married to the world's greatest guy for almost 30 years and our sex life means alot to him, too. It's just different now, but still very important. We've changed things, mornings are better than nights, it takes longer than it used too, etc., but IT IS POSSSIBLE to have good sex after bc. We just had to get more creative.

    Have you tried Zestra? If you have clitoral orgasms, it helps increase sensitivity to that area. You can get it at Walgreens nationwide. I tried it and I think it helps.

    Good luck, I hope you get "back in the saddle" soon!
  • mmfeelgood
    mmfeelgood Member Posts: 11
    edited March 2006
    Shirl,

    Have you been to Toys in Babeland on Capitol Hill? It's a great little toy store, geared to women more than men. And they're very knowledgable there, too. Lots of fun stuff. As I listen to what you're all saying about having orgasms, I sympathize. I've always had a hard time getting there when I'm with someone (a freaky control thing, I think), but...with my eroscillator (I call it Jacques - lol), I have no problem, even now. I simply don't want to as often. I don't have a regular guy in my life, but the men I've known grew to understand that , for me, it was more about the journey than the destination anyway. Guess I'll have to keep explainin'......hehehe...as soon as I find that "young man" ;-)

    Jan
  • SpanArtist
    SpanArtist Member Posts: 38
    edited March 2006
    Thanks for the response, Shirley, and for the words of encouragement. I read about Zestra after reading your response and am going to try it. I'll let you know how it does for me! I was thinking about having a phone session w/ Dr. Berman (of TV fame...she's in California and I'm in Florida) but can't afford it right now. I posted about that awhile back. Has anyone else thought of doing that (especially you California gals)?

    Hugs,
    Liza
  • shirlr
    shirlr Member Posts: 24
    edited March 2006
    Liza, I'm very familiar with Dr. Berman's work and have been on her website and am a regular poster on her discussion board. She has an article online about women's sexual problems related with cancer, if you haven't seen it yet it's at: http://www.bermansexualhealth.com/conten...3&Itemid=47

    While Dr. Berman has done really groundbreaking work and helps many women with FSD, I haven't gathered anything new from her that would help us suffering with the aftermath of bc treatment. So, in my opinion, I doubt you'd get your money's worth by contacting her for a consultation.

    I'm wondering what would happen if a lot of us started emailing her about this problem? Maybe she would respond.

    Let me know how you like the Zestra. It doesn't appeal to everyone, it has a rather distinctive smell. But I like how it works!

    Jan - I have heard about Babes In Toyland but haven't been there yet... I'll have to check it out! An Eroscillator is next on my list. The right tool for the right job! By the way, I have an "old guy" and I can highly recommend age(and experience!) over youth! Heh, heh, heh.
  • jaybird627
    jaybird627 Member Posts: 1,227
    edited March 2006
    Re: Babes in Toyland. There's one in New York, too. I've been to both and can easily recommend them! Also, they have a web site (or did anyway - should have checked before I wrote that) for those of you who don't live in/near NY or Seattle.

    I like the Zestra. I've only used it alone though. It's expensive but I only use a little so I can make a package last at least four times.

    And I'm still for younger men! They don't last as long but then they're ready to go again sooner! Plus, you can train them your way!

    Janis L
  • SpanArtist
    SpanArtist Member Posts: 38
    edited March 2006
    Hi again, Shirley,

    I can tell we're both researchers! I posted a link to the same article you mentioned above in a much earlier post on this same thread!

    I didn't elaborate in my previous post about contacting Dr. Berman, but as well as not being able to afford the cost, I came away with the same opinion you expressed...when I spoke to her office staff, they told me she would want full labs done, and I had the distinct impression that her treatment is holistic (vitamins, etc.) rather than specific, because something like PT-141 just isn't out there for us at this time. I've started my Kegel exercises, bought a Panasonic Pore Cleanser to try as a clitoral pump (it's much cheaper than the Eros Therapy pump) and do common sense things like exercise, eat right and don't smoke and have done those things for years. I think those of us BC survivors who are post-menopausal seem to have an even more difficult time with sexual response problems...do you think so? I know that, having been on HRT right up until my BC dx, I was SLAMMED into menopause!

    I think your idea of all of us e-mailing Dr. Berman is a great one. As well, awhile back I contacted Palatin, the drug manufacturer that's working on PT-141, to see if they had a clinical trial going that would be appropriate for BC survivors. I was told that they would be doing trials on different pathologies in the future, so maybe it would be a good idea for all of us to contact them too, to let them know how many of us are interested. Again, here's their web site:
    http://www.palatin.com/default.asp

    I'll let you know about the Zestra!

    Hugs, Liza
  • mmfeelgood
    mmfeelgood Member Posts: 11
    edited March 2006
    oh, Janis....you made me smile....I have always joked about "Get 'em young, and raise 'em right!" - lol....I am definitely with you

    Jan
  • shirlr
    shirlr Member Posts: 24
    edited March 2006
    Liza:

    I couldn't agree with you more! I was slammed into menopause too. I had my last period in March of 2003 and started chemo in April and then... crash! Hot flashes and full blown menopause. The sexual problems I have now are totally new and totally frustrating. Like you, I've been trying everything I can get my hands on. I'm much better, but still struggling.



    I just can't accept this situation and cannot beleive there isn't more help out there for us. Maybe we DO have to make more noise to get the medical community to pay more attention to us. My personal opinion is that since so many of us are in our 40's and 50's we're considered "past our prime" and medical professionals (most of whom are younger) think we should be able to live with diminished sexual functioning. What a bunch of crap!!! It makes me angry. I'm firing off some emails!



    Thanks for your kind words!
  • Anonymous
    Anonymous Member Posts: 282
    edited March 2006
    Let me add my 2 cents... 40's and 50's past your prime is the advertising world's BS. Far as I am concerned those are the best years.

    When I was 27 I married a woman who was 43 - in Sept we will have been married 26 years.
  • jaybird627
    jaybird627 Member Posts: 1,227
    edited March 2006
    Oilman! You are a "younger man!" Good for you!

    Janis L
  • luba
    luba Member Posts: 6
    edited March 2006
    I was also "slammed" into menopause....I was 42 at dx and had had a hystectomy at age 30(pre-cancerous cells I still have, had, working overies) so I was not in menopause at all. Now with the tamoxofen, I have so many hot flashes in a day its hard to keeep track of. My onc. says that if my next blood test in May shows Im still in menopause there is a different drug I can go on other than tamox....does anyone know what this is and is it any better????
    Thanks to all of you for your humor and candid conversations....no one but someone whos been there knows what we go through
    Thanks again
    marie
  • jaybird627
    jaybird627 Member Posts: 1,227
    edited March 2006
    Oh I, too, was slammed into menopause from chemo. I was as regular as regular could be before BC.

    Marie, I do believe the "other" drug your onc is referring to would be Arimidex or Aromasin or Femara. They're all for those of us who are (now) post-menopausal.

    My blood tests show I'm post-menopausal but so far I'm okay on the Tamoxifen and am too scared to switch to an AI.

    I'm one of the lucky ones who's hot flashes have disappeared. I have no idea where they went but thay can surely stay away!

    Janis L
  • luba
    luba Member Posts: 6
    edited March 2006
    hi Janis....why are you too scared to switch to an "AI" and what exactly is an AI....should I want to stay on tamox?
    Thanks
    Marie
  • flapjackmomma
    flapjackmomma Member Posts: 1
    edited March 2006
    Alright ladies - this is too funny - after reading this string yesterday, I dreamed last night that I went to the toy store and bought an Erosillator!! I don't even know what it looks like, but I guess my subconscious must have had a picture in mind!
    Also - a shot of tequilla can do wonders for the libido!!
  • Anonymous
    Anonymous Member Posts: 282
    edited March 2006

    Post deleted by oilman79707

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