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 10:45AM - edited Feb 9, 2016 10:04AM by moderators

Posted on: Oct 17, 2004 10:45AM - edited Feb 9, 2016 10:04AM 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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Aug 2, 2022 02:18AM karen1956 wrote:

My oncologist allows me to use vaginal estradoil as it does not circulate in the blood. I've been using it for a few year

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Aug 5, 2022 08:46PM wondering44 wrote:

My husband and I set up a sex schedule. We don't deviate even when it is hard to stick to the schedule. We had some speed bumps getting started. I visited an Urgent Care where the doctor prescribed I use more lube. Lots of laughs a few days later after the pain subsided.

The schedule ended up being a "win" for both of us.

We are dating again.

We are communicating again.

We are working hard to put more effort into understanding each other's needs before reacting.

We are laughing together again.

We are sexting again (like two older people).

We are having lots of sex again.

We are cuddling again.

We are touching again without sex involvement.

We are having fun again.

We are working hard together to stay on track. I am crossing my fingers we continue to have luck with our schedule.


I didn't get a choice in getting cancer. I do get to choose how I live each day after. Surgery 8/18/2021 Lymph node removal (Right): Sentinel; Mastectomy (Right): Nipple Sparing Surgery 8/31/2022 Mastectomy (Left): Skin Sparing; Mastectomy (Right): Skin Sparing Dx DCIS, Right, 1cm, Stage 0, Grade 2, ER+/PR+, HER2- Dx DCIS, Right, 6cm+, Stage 0, Grade 3, ER+/PR+, HER2- Dx IDC, Right, 2cm, Grade 2, ER+/PR+, HER2- Dx IDC, Right, 6cm+, Grade 3, ER+/PR+, HER2-
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Aug 5, 2022 09:53PM miriandra wrote:

Awww, how beautiful! All the best for many happy times with your hubby.

Smile

Dx 5/31/2019, DCIS/IDC, Left, 1cm, Stage IA, 0/1 nodes, ER+ Surgery Mastectomy (Left)
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Sep 4, 2022 02:34PM runor wrote:

I posted about this on another thread. I am hearing bits and bobs that the study that said hormone replacement therapy was akin to death to women, might have been a shit study with shit conclusions that resulted in shit treatment for millions of women who were suddenly, on the basis of horribly flawed research, denied hormones. Of course, this is just snippets and suggestions I am finding. I have not come across any major medical names that support what I'm hearing. They might be out there. But I haven't found them. I am just hearing little drifts of pushback on the wind, pushback against HRT being swept off the table as bad, bad, bad

I guess the question that is rattling around in my head is ... what is going to kill me? Or, statistically, what is most likely to kill women? Heart disease is right up there. Top of the list. We FEAR breast cancer but as far as a killer, it ranks several notches below heart disease. Heart disease still kills breast cancer patients. If you survive breast cancer but die of heart disease, heart disease that might have been prevented with the use of hormones, are you better off? If you have statistically 10 years of life left, you are hormone depleted because of menopause and / or cancer drugs, you would like to have an intimate relationship with your partner but can't / don't because of the physical limitations inflicted on your vagina by age/drugs.... are you really being smart, prudent, balanced and sensible by DENYING yourself the hormones that might make the remaining years of your life better?

Too many women, and I am very included in this, have NO CLUE what our hormones do and why we need them and what happens when we don't have them. We are treated as if female hormones are optional to the life of a female. Are they? They are certainly treated that way. If someone told you that 5 bad health outcomes could be prevented with hormones, but using it might put you at risk of 1 bad outcome, what would you think of that? I mean, many of us took cancer treatments that only offered slim improvement in survival. But we did it anyway knowing that these treatments carried risks too. We took big risks to gain small gains. I wonder if we need to apply this to hormone therapy? Maybe, so we feel better and enjoy the years we have left, we shod consider the potential BIG benefits of HRT, which might be bigger than the risk of feeding a hormone positive breast cancer.

I don't know what to think. I need to understand so much more than I do now. But I have been battling a vagina that suddenly hates me and with the way it's behaving, I hate it back! On the one hand taking HRT might trigger more cancer. Do I want that? No. But then, it might make my bones, brain and heart and vagina feel better and if I have limited years to live, don't I want to live them feeling as well as I can? No easy answers. I am pondering these things.


Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Radiation Therapy 7/5/2017 Whole breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 7, 2022 03:38PM joules44 wrote:

Runor, I feel you! I managed to conquer breast cancer but at a toll to pretty much every other system in my body. After a Reclast infusion two weeks ago to repair bone loss from the AIs, I am now scheduled for an echocardiogram due to side effects from Reclast. I am always chasing the symptom right in front of me.

I would LOVE to use estrogen cream but my oncologist thinks it's risky. Intrarosa, the DHEA cream, is also contraindicated for women who have had breast cancer. But if I'm on AIs, wouldn't that block any estrogen that could be produced from the topical creams? Gah! It's so overwhelming. I have met with an oncology sex therapist and purchased the dilators and the lubes but I feel like I don't have time to do it all. I exercise everyday to help my bones and hopefully prevent recurrence of breast cancer. I meditate to keep my anxiety at bay. But I also work full time and the thought of adding in yet another thing with sex therapy 3-4 times a week (when honestly my libido is so low sadly) seems daunting. But at the same time, damn, it would be great to be having sex again. To WANT to have sex again. I don't know. I'm just venting here. My sister, who has never had breast cancer, is in menopause and I don't think she cares if she ever has sex again. She uses estrogen cream only to prevent recurring UTIs. I would love to be free of wanting to be a sexual creature again but I still want that in my life. Having a sex life would help me to feel like a whole person again.

Dx 4/2018, DCIS/IDC, Right, 1cm, Stage IB, Grade 3, ER+/PR+, HER2+ Chemotherapy 10/14/2018 Taxol (paclitaxel) Surgery Lumpectomy (Right); Lymph node removal (Right): Sentinel Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Femara (letrozole)
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Sep 7, 2022 09:19PM karen1956 wrote:

I find it so interesting that there is so much variance from oncologist to oncologist on what they permit patients to take/use. I was ER/PR+ and my oncologist allows me to use vaginal estrogin as he said it does not circulate in the blood stream. I use Imvexxy suppositories. It is estradoil. It is great for vaginal atrophy.

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Sep 8, 2022 05:55AM kbl wrote:

I got my estradiol script from my gynecologist. I understand oncologists’ concerns, but I think gynecologists are more knowledgeable when it comes to that. I went on for quality of life. I’m also Stage IV. I’m not sure what I would have done if I was an earlier stage. I totally understand the hesitancy.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Missed diagnosis from 2013 to 2019 Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- Targeted Therapy 5/1/2019 Ibrance (palbociclib) Hormonal Therapy 5/1/2019 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine) Hormonal Therapy Femara (letrozole)
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Sep 8, 2022 12:57PM runor wrote:

I keep hearing the words 'allow', 'permit'. Cancer did NOT take the right of ownership away from us. We live in our bodies, we must tolerate and manage our bodies. The cancer was mine, not my oncologist's or surgeon's or anyone else's. At the end of the day I am trapped alone in my own head with the thoughts and fears that crash around like bowling balls falling out of the back of a truck. It may make my onc feel better to tell me no no no, you can't have any estrogen. He may feel he's doing 'what the book says'. But to hell with his feelings! I am not a book! I am a person! I have a life that is worth living! And I DO NOT relinquish one inch of my personal autonomy to a doctor who permits, allows or IN GRAVE ERROR thinks that is his/her authority to wield !!!!! AAGGGHHHH!!!!! My docs are guides and I appreciate their input but at the end of the day, if I want to not wince and bleed every rare time we attempt sex (which I am uninterested in) there is not a person alive on planet earth who is in any position to deny me any drugs that might help we with that, if that is what I want. I am the boss of me! My god, how and why do we forget that?

In the past I too believed that taking hormones was a one way trip to metastatic breast cancer. Is it? Seems more and more evidence says that what we used to know, what we used to believe, what we thought was the truth...was wrong! I need to know more. I want to work out, in my own head, how to think and feel about this issue. Like .... in order to NOT get breast cancer again I am risking heart disease, osteoporosis, Alzheimers and a busted vagina and the sudden death of any intimate/sex life and even have frequent thoughts of divorce because my husband has now just become someone I clean up behind and cook for and I'm not really finding that a fulfilling life calling. ALL THAT is what I accept to avoid a cancer. That might never return. And even if it does is it going to be the most likely thing to kill me? There is SO MUCH MORE to this topic to consider than just if hormones make the cancer come back. Just how much shitty life are you willing to suffer to keep cancer away? For some the answer will be, lots. For some the answer will be quality over quantity. I can't tell anyone how to arrive at their own answer. Hell, I can't even arrive at my own answer! But I do know that the automatic, thoughtless, old style, instat denial of any hormonal relief is unconscionable and abusive.

I too have, in the past couple months, discovered that I get yeast and bladder infections for no damn reason, and feel like I have sandpaper in my underwear all the time. I am miserable. Every step I take is horrible. Hot flashes have made sleeping impossible! And having hot flashes on 36 degree days makes me want to puke. Literally I get so sick in the heat I have to go lay down, I am finished, done, over, fried. Could a hormone give me my life back? I don't know. But I think my doctor doesn't know either. He just does what he's been told. Time to revisit what he's been told.
PS have been applying to my lady bits some smeared on hormone cream that I got before I was diagnosed with cancer. So I've been using the same tiny tube since 2016 which tells you that i have NOT used very damn much of it. To anyone here avoiding some localized vaginal relief because their doc won't 'allow' it ---- SMARTEN UP!! And do some research. The idea that a little bit of vag cream is going to trigger a relapse is now debunked -- get thee some hoohoo cream and fix that broken vagina!

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Radiation Therapy 7/5/2017 Whole breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 8, 2022 06:28PM - edited Sep 8, 2022 06:29PM by kbl

I love when you write, Runor. I hope the cream helps. I know it's helping me. Bladder infections are my worst nightmare. They are so painful, I would do anything to keep them away. There was a time I felt my husband was my roommate. We've been together almost 41 years, married 38. We've had a change in our living situation where we are at our vacation home a bit more. It's in the country. He's happier, which makes me happier. I'm starting to get used to it. Things are better. I wish you could downsize a bit so you're not having to do so much where you are. Hugs. And great advice.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Missed diagnosis from 2013 to 2019 Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- Targeted Therapy 5/1/2019 Ibrance (palbociclib) Hormonal Therapy 5/1/2019 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine) Hormonal Therapy Femara (letrozole)
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Sep 8, 2022 08:59PM karen1956 wrote:

Runor - well said. I agree its my body and I get to make the decisions. My oncologist used to write my Rx but now my PCP does. When I saw a gyn they wrote the Rx. So you are correct allow is not the correct term. I stopped AIs due to the unbearable side effects. I hope you find some relief. For me it's all about quality of life. Sending. you hugs.

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,

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