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I WANT MY MOJO BACK!

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  • lago
    lago Member Posts: 11,653
    edited June 2013

    The ring lasted 12 months before it finally went away! was thinking I was scared for life. Chemo messed up my skin and healing. I think Herceptin didn't help either.

  • kira
    kira Member Posts: 659
    edited June 2013

    Just to be clear, I had posted the article--it wasn't me who found the ring, but recently, I had a hysterectomy for endometrial abnormalities caused by tamoxifen, and those stickers left adhesive reaction rings on me for weeks, and I did find one on my back after I got home.

    It took a good couple of weeks for the red rings to go away.

  • JanetB1961
    JanetB1961 Member Posts: 5
    edited June 2013

    Funny. I, too, found the snap sticker between my shoulder blades nearly a week after my hysterectomy. I think they are in too big a hurry to turf us.

    I am trying to push the mojo. My DH has been so patient, yet frustrated, so I jumped the gun a bit. Doc said 2 more weeks. I waited 10 days. I had some blood. Not sure if it was from the internal healing not being done, or from rehydrated blood. Either way, a bit scary. But, it felt nice so things aren't gone completely. Yeay! For now. : )

  • ang7894
    ang7894 Member Posts: 427
    edited September 2013

    Hi, Ladies

    I need some Help I will not be able to use scream cream, I do not have a compounding pharmacy in  70 miles from me.

    So what else can I use ? NO over the counter anything is working for me It hurts almost instantly and dries up very quickly. 

  • Lily55
    Lily55 Member Posts: 1,748
    edited September 2013

    Try yes yes yes - google it, its all natural

  • BayouBabe
    BayouBabe Member Posts: 1,467
    edited September 2013

    I did not have a compounding pharmacy near me either. My MO helped me find one that mailed me my prescription through the mail. Don't give up! It is so worth the effort to get some!

  • julieho
    julieho Member Posts: 164
    edited September 2013

    Hi everyone,

    I had a double mastectomy July 2012, two post surgical infections on my left breast tissue expander - had to take it out, went through chemo, then had it put back in and had both of my implants put in this past May.  I am still on herceptin - last one this Thursday and I am really emotionally crashing.

    Not only do I have NO mojo and haven't throughout this past year but I so struggle with not having any sensation in my breast.  The implants aren't very comfortable even though I went with smallish implants, small size B, but I have no nipples and no sensation there whatsoever and whenever I try to have sex I just start crying and feel so sad about losing my breast, having no mojo and my husband is so sweet, patient and okay with it.

    It is not just the lack of sensation right now - I did okay for awhile this spring after my implants were put in, I physically started feeling better from chemo being done and slowly getting hair back.  But, as I approach the complete end of treatment with my herceptin being done I feel like a mess.  I just cry all the time and have been so depressed.  

    I also am trying to wean off of pain meds, which I have been on and off of, mostly on for over a year and that is making me feel physically and emotionally awful too.

    Ugh - sorry to dump but I am just feeling really worn out with this.  My oncology therapist says end of treatment depression is normal, she talks about the PTSD stuff, which seems very real to me but my feelings aren't helped by my intellectually understanding this - it is just the feelings and the struggle I am having with those.

    Thanks everyone who is out there and understands.

    Julieho

  • sweetandspecial
    sweetandspecial Member Posts: 1,669
    edited September 2013

    One word......Ativan (or some other anti-anxiety med)

    Yeah, yeah, I guess that's six words (or seven in you count the hyphenated word as two).  Seriously, Ativan works wonders for me when I get weepy.  I take it when I need it and I know I won't need it forever so it's nice to have on hand during this continuing journey.

    I miss my nipples too, and the lack of sensation across my breasts. What really honks me off is the dry hoo-hah.  Never had that problem before and having to use lubrication is a pain in the *ss.  No more spontaneous sex in our house until Arimidex is done 4.5 years from now Frown.

    Hang in there Julie......

  • fredntan
    fredntan Member Posts: 237
    edited September 2013

    Julie this is normal. I cried and cried when tx was over. Almost quit my job.



    You will find your way... Take the xanax and or antidepressant



    I am better now. It just takes time to heal. You have been throughhell.



  • lago
    lago Member Posts: 11,653
    edited September 2013

    julieho do not suffer alone. Get some support. It took a long time for me to get used to no breast/nipple sensation. It took time also for the implants to feel OK. Granted they still feel different but not bad like before.

  • julieho
    julieho Member Posts: 164
    edited September 2013

    lago,

    Thanks for saying it takes a long time to get used to no breast/npple sensation and for the implants to feel ok.  I noticed you had the nipples and tattoos done.  I haven't decided on that - I sort of want to have it done so the breast at least look more like a real breast and there is a nipple to touch for my husband even if I don't have any feeling there but I also like not wearing bras anymore and thought if I do nipples I may have to.

    Just wanted to hear what your experience was with doing that.

    Thanks - I am seeing an oncology therapist right now and trying to find a womens cancer support group to go to.

  • julieho
    julieho Member Posts: 164
    edited September 2013

    Thanks fredntan - I appreciate your advice and support.

    Julieho

  • ang7894
    ang7894 Member Posts: 427
    edited September 2013

             Has anyone used this? Premarin vaginal cream.   If so what do you think of it? Did it work for you?

    This is what the doctor just proscribed for me.

                

  • lago
    lago Member Posts: 11,653
    edited September 2013

    julieho I'm glad I did the nips & tats or is that tits & tats Tongue Out The nipples do flatten down a lot. Can I wear a wet tee shirt… of course not but they only stick out like button candy, just much softer. If I wore a heavier shirt I probably could go bra less.

    http://25.media.tumblr.com/tumblr_ljkdczFIgL1qzq96lo1_400.jpg

    I had fat transfer and a revision to lefty when I did that nips. If I just did the nips it would have been a breeze of a surgery. Tats were easy. Went in, had them done, took the bus home since it was the end of the day.

  • julieho
    julieho Member Posts: 164
    edited September 2013

    lago

    Thanks for getting back to me.  I am thinking once I see my plastic surgeon again this October, which will be 5 months after I had my implants put it we will discuss having nipples and tats done.  Because of the long delay between my right breast tissue expander being put in, which was at the time of my initial bilateral mastectomy, and the left tissue expander not being put in again until January and then the two infections I had on that side I also ended up with pretty lopsided breast.  My surgeon was bothered more by it than me initially.  She wanted to replace the right one as that one is smaller and not as filled out so I have to make a decision about that too.  I don't think unless I am having the right implant replaced I will do nipples on two lopsided breast.

    Oy - the fun of recovery.

    Thanks again. - Julieho

  • lago
    lago Member Posts: 11,653
    edited September 2013

    Julieho No one's breasts are perfectly symmetrically. Granted I do understand the lopsided. You don't have to do the nipples right away. Wait a few years to decide if you are undecided.

  • julieho
    julieho Member Posts: 164
    edited September 2013

    lago


    Ah you are so right.  Mine were never perfectly symmetrical before my surgery thats for sure.  I will talk it over with my surgeon and see what she thinks.  She is bothered that the right side, which wasn't ever infected should have had a slightly bigger implant because there was no scar tissue built up from the two extra surgeries I had on the left, hence the left looks bigger, fuller and up higher on my body and the right is smaller, saggy and sits lower.  In clothes it really doesn't matter so I am not sure I would go through another surgery of having my implant swapped out on the right again but if I do nipples I will then maybe consider it.

    What is a fat transfer?  It sounded like you did a revision to one breast too when you had your nipples done.

    Thanks for all your input.

    Julieho

  • tenaj
    tenaj Member Posts: 365
    edited September 2013

    My experience was that my MO agreed with my gyn to use estrace cream 2x/week, which I started about a year ago. It definetly solved a lot of issues. It took about 1 month to really notice the maximum benefits.

  • lago
    lago Member Posts: 11,653
    edited September 2013

    Sorry I've been MIA. Was out of town. Yes I had a revision to left when I did the nipple recon. Fat transfer (or fat grafting as many call it here) is when they take a little fat from one place on your body (in my case thighs) and use it to soften the step off you can get with implants. So I have thigh fat in my boob area.

  • marymo
    marymo Member Posts: 1
    edited September 2013

    I've noticed that this post is rather old and there hasn't been anything new said. Is it that everyone has found a solution that I don't know about or has everyone just given up any hope of ever having an enjoyable sex life again? I for one am not going down without a fight. Has anyone with ER+ cancer tried testosterone gel? I asked about it over a year ago and was told no as the body can convert it to estrogen. I think it's time I go back and tell them its my body and my life and therefor my choice what risks I'm willing to take. It's been 6 years cancer free and I think it's time.

  • sweetandspecial
    sweetandspecial Member Posts: 1,669
    edited September 2013

    marymo - there's another thread about SEs from Arimidex that's more active (Topic: For Arimidex (Anastrozole) users, new, past, and ongoing).  I haven't given up, no way!  The primary thing I miss (second to my nipples, of course Tongue Out) are the many opportunities for spontaneous sex to occur.  Ain't gonna happen with a dry hoo-ha.  Too much planning and artificial lubrication needed now for spontaniety! 

  • Annabella58
    Annabella58 Member Posts: 916
    edited September 2013

    Hi all, I just was given some Karlson Vit E suppositories by my OB/GYN as I've got atrophy  (2 BCs, ER+, arimidex, hyst/ooph)  No no to any hormonal creams, etc. by gyno.

    Anyone know if the E suppositories are Ok when one is on arimidex?  And do they work?

    Am on plalin olive oil now, nightly, which works OK but not for sex life which I would like back.

    Also:  For UTIs...theracran, by biologix.  Needs an RX but oh the difference.  Zero UTIS!!!!!!!!!!!!!!

  • moneeme
    moneeme Member Posts: 10
    edited September 2013

    Premarin works wonders for me. Gyn had no problem giving it to me. Although I have no desire, at least I can have sex and not be in horrible pain. I've been using it for years now with no issues what so ever. If one doc won't give it to you, try another.

  • BayouBabe
    BayouBabe Member Posts: 1,467
    edited September 2013

    Anniealso - yes they work! You can order them on amazon.com as well. One suppository will probably be too much. Start by cutting it in half or thirds and try that. Use at night, as they seem to work better if you lie down for a period of time after using them for obvious reasons. Much easier and less messy than olive oil!

  • Annabella58
    Annabella58 Member Posts: 916
    edited September 2013

    Thanks Bayou Babe!  That is kind of where I was going ....cutting it in thirds and seeing how I do on it.  Any allergic problems with it?  The pomegranate extract cream i tried was a no go...huge hot flashes.

    I am unable to use any type of estrogenic stuff.  Too ER++.  Onc. said maybe once in a blue moon a trace of estrace (which is far too small to help, so not point).  Hoping for a  miracle from the E ...

    The olive oil does work.  Just not for intimacy, which is what I would love to re occur...

  • Annabella58
    Annabella58 Member Posts: 916
    edited September 2013

    Also:  what is "scream cream?"

  • Annabella58
    Annabella58 Member Posts: 916
    edited October 2013

    bump

  • BayouBabe
    BayouBabe Member Posts: 1,467
    edited October 2013

    Scream cream is made by a compounding pharmacy. You apply it about 10 minutes before intercourse. It helps your body make its own natural lubrication. If you do a search here you can find more information and the actual "recipe" for the pharmacy after you get your prescription. Works wonders!

  • Annabella58
    Annabella58 Member Posts: 916
    edited October 2013


    Wow! Thank you Bayou Babe! Do you happen to know if it is non estrogenic? I sure hope so!

  • BayouBabe
    BayouBabe Member Posts: 1,467
    edited October 2013


    yes - no estrogens.