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Help with Abbreviations

Topic: I WANT MY MOJO BACK!

Forum: Sex & Relationship Matters —

A safe place to talk candidly about how your romantic relationships and/or your sex life has changed following your diagnosis and treatment.

Posted on: Oct 17, 2004 11:45AM - edited Feb 9, 2016 11:04AM by Moderators

Mena wrote:

Hey girls,

You know, this loss of libido thing is just unnacceptable. I was in the chat room earlier today and mentioned it and man, you should've heard how many of us are experiencing this problem. I promised the ladies I'd post my rant, so here it comes (or....doesn't ).

If bc were a man's disease, not only would there be a cure for bc by now, but certainly there'd be a plethora of non-hormonal therapies available for whatever the female version is of "erectile dysfuntion". I don't think I'm exaggerating. I'll make the damn commercials myself (no pride here lol).

Prior to the news of my recurrence/mets (August) my husband and I had a phenomenal sex life. I absofreakinlutely loved making love to my husband. (Btw, I'm 43; and as part of tx for mets, I was chemically oopherized with Zoladex and take Femara daily).

I still enjoy loving my love. Emotionally, spiritually, mentally, I do. Even physically I still like it. It's just not rockin' my world, as they say, like it used to. I miss that. And I refuse to accept this as acceptable. It is not. If the genders were reversed, this would be the first &%$#* problem they'd address! Well, ok, the second.

I know the clinical reasons for the low libido, but there's got to be something out there for us that's not contraindicated with treatment. Here's what I've tried so far: a Zen approach; a "go w/the flow" attitude; a "get started and it'll all just kick in" mindset; a "try not to think about it at all" focus; et al.

I'm interested in hearing what the rest of you have to say about this matter, and I know it is an intimate one. But we're all sisters and I do hope some of you will share your experiences and whatever help you've found for missing mojo.

Thanks for letting me vent. God Bless.

Mena

****************************Addition from February 4, 2016***********************************

Hi All,

We've gone through a lot (not all) of the pages on this topic, and tried to compile your suggestions.

Do you feel that this is a complete list of what has been discussed here? Please help us make a comprehensive list of your ideas!


Member suggestions for helping the libido:

Watch romantic movie or soft-porn on Netflix

Romantic music

Watch porn or visit short videos on Tumblr, YouTube, or other internet site

A little wine, or other substance to help relax (e.g. medical marijuana)

Sexual photos

Massage and massage oils

Literotica: Erotic/sexual stories as an alternative to images

Super sexy lingerie or fun clothing

Have partner practice foreplay and/or oral sex

Practice masturbation on a regular basis

Mindfulness, i.e. focus on what your five senses are experiencing in the moment --To keep your thoughts from dwelling on cancer and scars


Member suggestions to improve vaginal moisture:

Coconut oil works best as a moisturizer (freeze small balls to make suppositories)

Vitamin E suppositories

Almond oil

Replens long-lasting moisturizer

Luvena vaginal moisturizer

Shea butter melted into olive oil at a 2:1 ratio

Cocoa butter

Olive oil

Gynatrof gel

DHEA vaginal suppositories

Tip to use an applicator to insert moisturizers and apply a few times a week.


Member suggestion for lubrication during sexual activity:

Astroglide Natural (free from glycerin, fragrance, flavorings, and hormones)

Slippery Stuff (free from glycerin and parabens)

K-Y warming Jelly

K-Y Sensual Silk Liquid (paraben-free)

K-Y Liquibeads

K-Y UltraGel (paraben-free)

Astroglide, X (silicone-based)

Platinum Wet (silicone-based)

Replens silky smooth lubricant (silicone-based)

Sliquid natural lubricants (free from DEA, gluten, glycerine, glycerol, parabens, PEG, propylene glycol, sorbitol & sulphates)


Additional member suggestion to reduce pain:

Topical Lidocaine solution for use at the entrance of the vagina


Member suggestion for sex toys:

Vibrators (e.g. Hitachi Magic Wand, Pink Dot Vibe, Pocket Rocket, the Rabbit)

Dildos for pleasure, to stretch the entrance, prevent vaginal atrophy and strengthen muscles


Member suggestion for estrogen or hormone-based treatments

(MUST discuss first with oncologists as not typically recommended for women who have had breast cancer)

Vagifem® (estradiol vaginal tablets) inserts

Testosterone patch or gel

ESTRING® (estradiol vaginal ring)

ESTRACE® CREAM (estradiol vaginal cream)

Scream Cream - contains a combination of prescription and non-prescription components described as blood flow enhancers and vasodiolators to apply to your clitoris (adding here, as it contains a bit of Testosterone- 0.25mg per dose)


Other member suggestions:

Kegel exercises to strengthen pelvic muscles

Pelvic physical therapy

Dilators to stretch the skin in your vaginal area and re-train the pelvic floor muscles to relax

Observe which antidepressant you take, and make necessary changes

MonaLisa Touch: A minimally invasive laser treatment for vaginal rejuvenation.

Easier if she "goes first".

Regular activity is important.

Read the book, COUPLES CONFRONTING CANCER: KEEPING YOUR RELATIONSHIP STRONG, by Fincammon & Bruss, published by the American Cancer Society.

Share this thread with your husband/lover to create a new bond of intimacy, normalize what others are going through and open communication.

Take a look at this resource: https://sexualityresources.com

Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+
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Feb 21, 2019 02:38PM - edited Feb 21, 2019 02:43PM by LillyDuff

Wanderingneedle:

Just saw your post. I'm still using coconut oil on a daily basis. Love it! No more expensive creams and hormone free!

I also had Mona Lisa Touch treatments from my gynecologist and am feeling normal despite taking anazstrozole and chemotherapy after effects. I do have to get yearly repeat treatments of Mona Lisa Touch, though and so we'll see how I last between treatments.

Coconut oil is a win win in my book!

Dx 4/25/2017, IDC, Left, 2cm, Stage IIB, Grade 3, 0/4 nodes, ER+/PR-, HER2+ (FISH) Targeted Therapy 5/15/2017 Herceptin (trastuzumab) Chemotherapy 5/15/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 5/15/2017 Perjeta (pertuzumab) Surgery 11/14/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 1/25/2018 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/18/2018 Prophylactic ovary removal Hormonal Therapy 9/29/2018 Arimidex (anastrozole) Surgery 11/15/2018 Reconstruction (right): Fat grafting Hormonal Therapy Arimidex (anastrozole) Surgery
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Feb 21, 2019 05:42PM Wanderingneedle wrote:

Thanks, Lilly, I put some coconut oil in my bathroom and try to remember to use it. It’s cold right now so it stays solid but don’t know what I’ll do when it warms up as I’m in SoCal and it’s often over 80 inside the house. The last few months haven’t been too bad since I was on chemo but just started faslodex so I expect changes.

Libby - Just trying to figure it all out and keep up with daily life. Dx 11/9/2017, IDC, Right, 6cm+, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 1/22/2018 Femara (letrozole) Targeted Therapy 1/22/2018 Ibrance (palbociclib) Chemotherapy 9/13/2018 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 2/12/2019 Doxil (doxorubicin) Hormonal Therapy 2/13/2019 Faslodex (fulvestrant) Chemotherapy 2/26/2019 Halaven (eribulin)
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Mar 10, 2019 07:47PM - edited Mar 10, 2019 07:50PM by Pipandor

So I'm not alone... I'm menopaused bur it's a feeling of a tight ring that other women have described here, more than dryness, that makes sex painful. My husband who has always been supportive, and never pushy, has the libido of a 17 year old, so I know he misses intercourse and so do I. I used to enjoy it, but now I'm afraid of the pain. I've used dilators (also painful) and gone for the Mona Lisa treatment (only short-lived and partially effective and very expensive). It seems the best I can do is use Replens, allowing a few hours for it to work, and then biting the bullet. Since my cancer was hormone negative, my oncologist says I can use vaginal estrogen but having seen hormone positive recurrences in women initially diagnosed with hormone-negative HER2 positive BC, I am scared. Any thoughts, advice? Coconut oil and other "natural" lubricants haven't helped.

Dx 1/2016, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (IHC) Surgery 2/5/2016 Lumpectomy: Left Chemotherapy 3/11/2016 Taxol (paclitaxel) Targeted Therapy 3/11/2016 Herceptin (trastuzumab) Radiation Therapy Whole-breast: Breast
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Mar 11, 2019 10:35AM jaycee49 wrote:

Pip, what you need is moisturizer, not lubricant. You need to rebuild the vaginal tissue. Lubricant is still necessary to use DURING but it takes some time to get the tissues back to "normal." I have a very extreme case of vaginal atrophy, had it before cancer. And I still take hormone suppression so I am totally different from you. If I could use vaginal estrogen, I would jump on it in a heartbeat. What I did do to get to where I didn't have a UTI every ten minutes is use some moisturizing product every night for four months. Coconut oil suppositories, etc. There are lots of them, some more expensive than others. All work about the same. I maintain this state with suppositories once or twice a week. Let me repeat. If I could use estrogen or even DHEA, I would. That works better than anything. Using a lubricant only works short-term. During the act. You need something that works long term, has time to soak into the tissues. It takes a while, 3-4 months. Even estrogen takes that time. The first time I used vagifem, it took three months to notice a change.

I didn't just have pain during, I had pain after for at least a week. DH and I still have various kinds of sex and all are fun but no intercourse is a bummer. The longer you wait to fix this, the harder it will be.

JaneZ (dx with MS at 41, slows me down some) Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/4/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/4/2014 Herceptin (trastuzumab) Chemotherapy 8/4/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/15/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Mar 11, 2019 12:29PM corky60 wrote:

Pipandor, Jaycee49 is right.  Get yourself a good estrogen suppository or ask your GYN about estrogen.  I use a suppository with a cocoa butter base and estrogen as the active ingredient.  It is prescribed by my naturopath and I get it from a compounding pharmacy.

Dx 3/25/2013, IDC, Right, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 4/25/2013 Lumpectomy: Right; Lymph node removal: Right Radiation Therapy 5/28/2013 Breast
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Mar 12, 2019 08:07PM - edited Mar 19, 2019 09:16PM by Pommom1809

I'm new to this forum, but find it to be very helpful to know there are more than a few in the same boat. My husband & I have been together since I was 16 & he was 17. We have been married almost 53 years. Our sex life was great up until October. That was when I was diagnosed with BC. My libido died then. My husband is 71 & I'm 70, we enjoyed good sex at least once a week. I so miss how it was, it's like another death in the family.

I have a jar of coconut oil I had bought for cooking, but is the kind of coconut oil you are speaking?

Doris

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Mar 12, 2019 11:12PM - edited Mar 13, 2019 12:34AM by Trishyla

Doris, yes. That's the stuff. I'd scoop out a bit into another container and keep it next to your bed. It really does come on handy.

And by the way, kudos to you for keeping your love life so satisfying for all these years. It's not an easy thing to do. I can understand why you miss it so much.

I hope everything works out well for you.

Trish







Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Mar 17, 2019 08:15PM - edited Mar 17, 2019 08:15PM by Pipandor

Jaycee, Corky, thank you so much for the advice. I think you've convinced me to give the estrogen suppositories a go. Is there an estrogen "light" product I could start off with?


Dx 1/2016, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (IHC) Surgery 2/5/2016 Lumpectomy: Left Chemotherapy 3/11/2016 Taxol (paclitaxel) Targeted Therapy 3/11/2016 Herceptin (trastuzumab) Radiation Therapy Whole-breast: Breast
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Mar 18, 2019 10:17AM jaycee49 wrote:

Pip, estrogen needs a prescription from a doctor. You probably need to discuss this issue with a doctor, maybe your gynecologist. They might want permission from your MO even if you say your cancer is not ER+. (You'd be amazed what doctors don't know.) I only like to suggest things I have used myself. As far as topical estrogen, I used Vagifem many years ago. It is very low dose. Many doctors use it with ER+ BC. If you are going to use estrogen, you have to be all in. You use it every night for 14 days and then twice a week thereafter. As I said above, it took four months to really notice my vagina being back to normal. It takes time. I would go to Amazon and buy some Key E coconut oil suppositories in the meantime. (There are lots of others but Key E is the cheapest.) Then those can be used on the nights when you don't use Vagifem. The problem with Vagifem is that it has gotten very expensive. It was not when I used it. I think they have a generic version now. And there are alternatives that others may post about. And there is DHEA which you can buy online. My MO says DHEA is just like estrogen. Turns into estrogen. If you want to have vaginal sex again, you have to DO something. Waiting will only make the situation worse. And waiting too long, like I did, will mean you will NEVER be able to have vaginal sex again.

JaneZ (dx with MS at 41, slows me down some) Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/4/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/4/2014 Herceptin (trastuzumab) Chemotherapy 8/4/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/15/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Mar 19, 2019 01:00AM fluffqueen01 wrote:

just a note on coconut oil. I bought an ice cube tray that had small shapes about the size of suppositories. I melted the coconut oil, poured it I'm and kept it in the freezer/fridge. Worked great. That being said, it did not help,with the pain. I am going to pursue the Mona Lisa touch and try and get estrace or something

BMX 2/10 w/TE Taxol 12 wkly/herceptin- 1 yr/ Tamoxifen now. TE’s fail/TE’s back in.  Implants 11/11- perky!" tatoo touchup remains. Be kind, for everyone you meet is fighting a hard battle. Plato Targeted Therapy 3/13/2011 Herceptin (trastuzumab)
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Mar 19, 2019 01:05AM fluffqueen01 wrote:

Pommon...if I was 79, I think I would tell the docs that you need a little estrogen just to keep other things healthy Geez, props to you for being active at 79. I feel like by the time vaginal estrogen might cause a problem you would be 90 and something else might be happening by then. You go girl! You are my new role model

BMX 2/10 w/TE Taxol 12 wkly/herceptin- 1 yr/ Tamoxifen now. TE’s fail/TE’s back in.  Implants 11/11- perky!" tatoo touchup remains. Be kind, for everyone you meet is fighting a hard battle. Plato Targeted Therapy 3/13/2011 Herceptin (trastuzumab)
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Mar 19, 2019 01:19PM corky60 wrote:

Pipandor, I use an estrogen suppository prescribed by a naturopath.  It has a cocoa butter base and contains 0.5 mg estriol.  Estriol is a very, very weak estrogen.  I am to use one per night.  It can also contain Vitamin E but I find that irritating. There is still some vaginal atrophy present but not as much.  I can function and the urinary incontinence that I experienced when I walked has disappeared.  I found that Vagifem was so weak that my body never even recognized it.  My PCP offered Premarin cream but I felt that would be too strong.  Estrace gave me a headache.

Good luck!

Dx 3/25/2013, IDC, Right, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 4/25/2013 Lumpectomy: Right; Lymph node removal: Right Radiation Therapy 5/28/2013 Breast
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Mar 19, 2019 09:20PM Pommom1809 wrote:

Fluffqueen, that was a typo, I’m 70 1/2. Yes it would be good to be going at 79, I think my husband probably will still be.

I need to get my feelings back in gear, think a lot of it is psychological. I feel so strange not having any hair anywhere.

Doris

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Mar 22, 2019 09:10AM Kali44 wrote:

Hi ladies, some time ago, I read somewhere on this message board, that someone tried using lidocaine to numb the pain. Anyone here tried it?

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Mar 22, 2019 04:42PM corky60 wrote:

I have pelvic pain syndrome.  When that flares I use one part of prescription lidocaine ointment (for some reason it's minty) to one part aloe vera gel.  But I don't have relations with my husband for a few hours after.  He doesn't want to be numb.

Dx 3/25/2013, IDC, Right, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 4/25/2013 Lumpectomy: Right; Lymph node removal: Right Radiation Therapy 5/28/2013 Breast

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