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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 12:45PM - edited Feb 9, 2016 12:04PM 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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Page 132 of 134 (3,995 results)

Posts 3931 - 3960 (3,995 total)

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Jun 12, 2018 09:55PM Micmel wrote:

everywhere I go Runor makes me laugh. You're just a joy to be around my friend. I have to chime in here. Because I used to be very active with my husband....it was And is a priority and to me a scary challenge. To me I feel I look like a recycled mannequin, that can't even raise her leg high enough off the bed without needing a shelf for support. I'm sure the cobwebs would need tending to and once it starts who knows what will happen next. We could spin the sex or scream wheel???? What will it be!!?? Spine pain? S letter shaping of cramping body parts? Sand paper vagina effects? Searing pain in the back of my pelvis, that I want to cry out.?

Uneven breasts and only one has a nipple outta get him going for sure!!. The way things in the sack surely have to just plain be planned and patient. I know it's important, but for me it was a mix between, feeling irritated during, and confusion of what I was feeling because of elasticity changes and I am now menopausal. Most woman couldn't care less if they see a penis again. I want to make my DH happy he deserves it. I love him more thanwords could express. So as long as it doesn't grow teeth and bite him, I'll do my best to satisfy. You Runor are truly preciously funny. Hugs my friend ~M~

Dx 1/22/2016, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 13/35 nodes, ER+/PR-, HER2- Chemotherapy 2/10/2016 AC Surgery 6/21/2016 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 7/20/2016 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 11/7/2016 Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Surgery Chemotherapy Chemotherapy
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Jun 13, 2018 08:07AM smwusaf wrote:

You've heard the saying that size doesn't matter? well, I just realized it really does....... And not the way men think it does :)

Dx 10/5/2017, IDC, Left, 1cm, Stage IIA, Grade 1, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 11/13/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 1/4/2018 Whole-breast: Breast Hormonal Therapy 2/20/2018 Arimidex (anastrozole)
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Jun 13, 2018 12:39PM Lamp wrote:

Ladies I do appreciate all your comments that I relate to....I do have pain on entry, and there is a tight ring up in the vagina! What is that tight ring? Muscle? Would massage help to loosen that tight ring? Yes, these are Effects, that I am still dealing with! Cheers to You all!

Dx 10/15/2012, IDC, 1cm, Stage II, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 11/7/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Hormonal Therapy 1/2/2013 Arimidex (anastrozole)
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Jun 13, 2018 01:53PM Lula73 wrote:

Lamp-that tight ring is likely atrophy from lack of estrogen. The tissues inside our vagina need the estrogen to stay supple. When they don’t get it they dry up, become tight, and become very thin making injury a likelihood.Dilators, Mona Lisa Touch, and the different suppositories/creams mentioned here can help with this.

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal Hormonal Therapy 1/2/2018 Femara (letrozole)
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Jun 13, 2018 05:45PM runor wrote:

OH lord, it's not just problems with the vag , but all our lady bits, like our bladder system, also need estrogen to keep them in working order. It is really hard to get into the mood when you know that there is at least a 50% chance that this sexual encounter is going to give you a bladder infection. For some reason the number of bladder infections I've had since starting tamox have really increased. I keep a big bottle of antibiotics here and at the first sign of that bad pain ... I gulp a pill and overdose on vitamin C, which acidifies the urine and is hostile to germs. For me catching it at the first sign can stave off a much longer, much worse situation. But it's like you're trying to concentrate on enjoying yourself, is it going to hurt? Do we have enough lube? Wait, that's not lube, that's his foot fungus cream. Oh well, I guess my hoohoo won't grow any mushrooms. Oh this isn't going so bad, a little weird feeling... yeah that's okay. Wait. Stop. I think I might be peeing. Am I peeing? I can't tell. I'm not peeing? Oh thank god, that would be gross, carry on. Like, there is just no good way to go about this.

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 13, 2018 05:53PM - edited Jun 13, 2018 05:54PM by Lula73

L. M. A. O.!!!!! 🤣😂🤣

And the sad part is, it's so true. 😭☹️

I take Uricalm with Mannose-D and a certain pro-biotic. Can't remember which one...thank you letrozole for the memory issue! I'll post it when I get home.

At least with the memory issues these drugs bring us, we will likely forget peeing!!!!!🤣😂

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal Hormonal Therapy 1/2/2018 Femara (letrozole)
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Jun 13, 2018 06:30PM KatyK wrote:

Not sure if this was mentioned but if you are on an anti-depressant you will likely have sexual side effects. I was taking Prozac and while my libido was still there, it was a lot of work to have an orgasm (sometimes I gave up) and they were not as intense. I went off the Prozac a month or so ago and I am enjoying sex more! The best lubricant for us is oral sex - gets my husband in the mood and really is the best lubricant. We call my DH my “personal lubricant “. We were told that he will have limited exposure to Ibrance but it’s a risk he is willing to take! That’s my man! Also helps us to do a fun activity together, travel, and enjoy some wine! The intimacy and endorphins from sex are so important. Hope this was not too graphic or personal but hey we gotta tell like it is during this difficult journey!

Dx 7/2017, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Jun 14, 2018 08:02PM FaithsMama wrote:

kk; I am over the moon happy for you!! I am so glad DH is in the know, understanding and supportive!

Runor: pain free boinking is awesome! May we all accomplish that goal soon!! :D

Lula; Uricalm has been my friend too!

As4me: I discovered this thing, don’t recall what they are called. I will find out and report it later. But it’s a package of 3 sizes of inserted things that go into your vagina and you wear it for like 15 minutes. While you wash dishes or fold laundry or whatever. The idea is that your kegal muscles are getting a workout, holding it in place. It strengthens the vaginal muscles and wall. The 3 different sizes allow you to graduate to the next size once you get some strength and resilience back. Until you are able to hold all three sizes in comfortably. Then you should be good to go, that plus Lube and pain free boinking here you come😂

My dr also approved Premarin for me. He says it’d be safe because it would take a decade or more of constant daily use to increase cancer recurrence risk. I am very stoked about this news! Hoping the two together, the kegal workout helpers and Premarin will get me to pain free boinking sooner rather than later. But I am single. So there is that obstacle. I like a challenge though. So all is good :)

Happy day for me. No chemo. No radiation. Kegal workout routine in place. Now onward for a boinking partner. 😂

Dx 3/30/2018, IDC, Right, 1cm, Grade 2, ER+/PR-, HER2- (IHC) Dx 3/30/2018, IDC, Right, 1cm, Grade 2, ER+/PR+, HER2- (IHC) Surgery 5/18/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement
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Jul 31, 2018 12:25PM jaycee49 wrote:

Interesting article showed up on my google news feed this morning. I don't agree or disagree. Just FYI. But if the FDA is going to say that it hasn't been tested yet, then why don't they test it? Or fund some testing? This has to do with money somehow (doesn't everything?) but I don't understand how. Just saw the article and thought of you guys.

https://www.cnbc.com/2018/07/30/vaginal-rejuvenation-brings-serious-risks-for-women-fda-says.html

Janet (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 6/5/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/5/2014 Herceptin (trastuzumab) Chemotherapy 8/5/2014 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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Jul 31, 2018 07:00PM corky60 wrote:

My urologist recommended the Mona Lisa Touch for me.  But a university gynecologist examined me and said that the top two layers of vaginal skin were missing.  I can't imagine a laser burn on top of that.  

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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Aug 3, 2018 06:46PM Trvler wrote:

I know some people have posted about the Mono Lisa on here but quite frankly, I am EXTREMELY skeptical of any online reviews of these kinds of things. It's just too easy for people to make up reviews to sell something.

Allison Dx 1/16/2015, ILC, Left, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2- Dx 2/26/2015, ILC, Left, 4cm, Stage IIIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- Chemotherapy 3/24/2015 AC + T (Taxol) Surgery 9/1/2015 Mastectomy; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Radiation Therapy 10/15/2015 Whole-breast: Breast, Lymph nodes Hormonal Therapy 1/1/2016
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Aug 3, 2018 08:48PM LovefromPhilly wrote:

I had a very negative reaction to Premarin. The docs don’t tell us it is made from Pregnant horse urine :-p

Instead I use Estriol cream. Much safer and gentler. I have not had any issues with it so far.

Not having sex here and honestly libido is quite low. I think my low libido was one of my first signs that something was “wrong” before I got my diagnosis. Anyone else have that experience?

Hugs all!
With Love From Philly Dx 3/25/2017, IDC, Right, 6cm+, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 4/4/2017 Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Aug 9, 2018 09:16AM Suz-Q wrote:

I just had my first Mona Lisa Touch treatment yesterday. Tried Thermiva a year ago without lasting results (the docs said it should last a year and it lasted two months). I'm hoping that Mona Lisa will last longer, because it's more invasive. Thermiva works from radio frequency heat induced damage and Mona Lias from laser energy dammage. Both expensive. I let you know how well it works after 6 months.

I'm so tired of fighting for my sex life

56 at diagnosis. Oncotype DX 10 Dx 9/17/2015, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 11/2/2015 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 12/13/2015 Whole-breast: Breast Hormonal Therapy 1/20/2016 Arimidex (anastrozole) Surgery 8/4/2016 Reconstruction (right): Fat grafting Hormonal Therapy 10/7/2017 Aromasin (exemestane)
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Aug 11, 2018 02:18PM Georgia1 wrote:

Jaycee, thanks for posting the FDA warning about laser rejuvenation. The FDA says that they "reviewed 29 published studies describing a burning sensation or bleeding that lasted more than three days after the procedure," and that they have received enough patient complaints to warn patients as well as notify seven companies that their marketing might violate U.S. laws. But I sure do wish there were better options, and more research.


Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 15, 2018 10:25AM Kali44 wrote:

Hey ladies, looking through the list of products suggested and was wondering if anyone has tried V Magic...they say it's all natural. Has anyone try this and found any relief? No sex here since diagnosis, 2016 Shocked

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Aug 18, 2018 12:14AM - edited Aug 18, 2018 12:20AM by PoseyGirl

Hi ladies,

I've read some of your posts and it helps just to know I'm not alone. Sex just hurts like a son of a bitch! I appreciate all the input. I like the tip about us using toys on our own to stretch the muscles. I meant to do this and forgot.

I saw a Gyn last week and bought some lubes at a local store. So far, none are really that great. The Gyn said my vaginal muscle definitely has gained that extra tone and tightness and I could benefit from pelvic floor muscle relaxation physio. So I've made an appointment to start that. I will also look into the dilator. I came home with a couple vaginal lozenges to try as well (I have the Replens and Vagisil), so I'll see how those work.

I can see that this will require a combo of things and will demand my patience, effort and time. I just get so upset that what should be so “simple" just hurts and involves so much effort.I'm watching Outlander on tv, and look how those characters start heavy breathing and have sex at the drop of the hat. And I think “must be nice to have sex and be wet, eh??". Yes, talking to fictional people, I am.

My natural reaction is to just want to stop even trying, but I'm fighting that reaction since I'm married and do want intimacy in my relationship - for him and for me. I need to accept that I'm no longer what I was physically (i.e a woman with estrogen that serves in many ways that we take for granted).

I've never been this big horn dog lol, but I am feeling very frustrated and sad about what so many of us face with this.


Radiation Therapy 1/11/2016 Whole-breast: Breast, Lymph nodes, Chest wall Dx 6/23/2016, IDC, Right, 6cm+, Stage IIIA, Grade 3, ER+/PR+, HER2+ (IHC) Chemotherapy 7/11/2016 AC + T (Taxol) Targeted Therapy 9/15/2016 Herceptin (trastuzumab) Surgery 11/28/2016 Lymph node removal: Right; Mastectomy: Right Hormonal Therapy 12/20/2016 Femara (letrozole)
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Aug 20, 2018 05:32PM honeybair wrote:

Losing a breast is torment enough, but losing the ability to use our vaginas just adds insult to injury. I am an older woman and my heart really goes out to those of you who are young and were enjoying wonderful, normal sex lives. Breast cancer is such a beast!

When I look into the future, it's so bright it burns my eyes... Oprah Winfrey Dx 12/6/2012, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2+ Chemotherapy 1/29/2013 AC + T (Taxol) Targeted Therapy 4/2/2013 Herceptin (trastuzumab) Surgery 8/18/2013 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy Breast, Lymph nodes
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Aug 24, 2018 02:37AM runor wrote:

I have been on tamox for a year and was very worried about losing my sex life. I'm not worried now. Now I don't seem to care. The thought of sex, wait, do I think about sex? I suppose I do, in an abstract way, like I think about my baby teeth, something that I lost a long, long time ago and since then, well, life goes on. Hub knows about the potential effects tamox could have on my vagina and by extension our sex life. So now my vagina has become a topic of marital conversation. We discuss it, like it's a lawnmower or car.

Hub: Do you think we should have sex?

Me: (disinterested, watching tv) Why.

Hub: You know, so it doesn't get all wonky.

Me: Can you define wonky?

Hub: You know, out of shape. Broken. Use it or lose it.

Me: No one has lost it. I know right where my vagina is. Same place for over 50 years now.

Hub: I think we should do it. I think you need it.

Me: What I need is new carpeting. This flooring is atrocious. I hate it.

Hub: (blinking, because he did not know we were talking about the carpet). Well I think we need to do something for your vagina!

Me: Great. We'll send it out for detailing later this week. Now will you stop talking and pass the chips?

In bed at night I used to reach over and put my hand on Hub. Or lay my head on his shoulder and now, I don't. It's like we're not connected. I can't decide if this is tamox or if it's because I truly do need new flooring. Either way, there is not just a loss of vaginal ability, but I don't seem able to give a damn anymore. Not about sex anyway. I have flat lined in the desire department.

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 24, 2018 11:39AM jaycee49 wrote:

Right there with you, runor. Right there. This morning, I gave DH a hand job. Happens about once a month. It's all I can get myself to do. Always, when I roll over onto my side to do the deed, my stomach starts hurting. No medical reason for that. Totally stress related. I can relax now for a few weeks until the urgency presents itself again. I'm going to gyn today for UTI/yeast/vb symptoms. They all feel the same to me. I am resigned to my crotch being on fire for at least half the time until I die. I can't even make myself think about what I will say to this doctor/nurse before doctor combo. Without a list, I will be stuttering nonsensically, sounding like a crazy person. I will get no help and have to figure things out myself, as I always do. The urine culture is in process at the lab now (took sample to PCP on Wed) and this doctor will do a vaginal culture. The saga continues with no end in sight. I just try to enjoy what I have to enjoy when I feel ok. And even when I don't. That's a new wrinkle. Enjoying things when I don't feel ok. I'm getting good at it.

Janet (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 6/5/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/5/2014 Herceptin (trastuzumab) Chemotherapy 8/5/2014 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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Aug 24, 2018 02:08PM bc101 wrote:

OMG Runor - thank you for the post!! I haven't laughed that much in a long time.....even tho this isn't a laughing matter, it helps to know I'm not the only one dealing with IT. I'm one of those who's called it quits on sex of any kind. It's strictly a DIY project for hubby. Sad, I know...but that's the reality.

I've tried so many lotions and potions, my top dresser drawer is devoted to all my paraphernalia. DHEA worked wonders for me, but I chickened out as there are no guarantees on the safety factor for us survivors. To me personally, it's just not worth the risk. But the good news is that almost right away it made everything all better "down there." That stuff works like magic. It allowed me to start using dilators and all was going well until I stopped. Without the DHEA, it's a no-go. Nothing else works. I use moisturizers just to feel comfortable and creams like Udderly Smooth as a barrier for the incontinence factor, but I sure wish they'd come up with something safer for us!


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Aug 25, 2018 10:09AM jaycee49 wrote:

After that downer post of mine yesterday, everything started going well. The gyn was great after I got the last parking space in the lot. The whole process seemed easy which gyn appts are usually not. All that clothes changing. She saw bacteria in the vaginal swab and prescribed a gel, nothing oral that makes me sick. Then, my PCP called with positive urine culture results. She prescribed an antibiotic that usually makes me sick (Nitrofurantoin) but hasn't ... yet. I also got the last space in the lot at the drug store. This gyn, a substitute for my regular gyn, asked if my MO would allow DHEA. I told her no, none of my doctors have ever said yes to DHEA. She still said she would check with my current MO. She mentioned Intrarosa. I had ruled that out but now I am considering it again. bc101, what form of DHEA did you use? It is scary but when I get so down as I was yesterday, I figure why not? I'm already stage IV. Do I still worry about it spreading? It already spread but I guess it could spread some more?

bc101, I'm not sure I can tell DH that sex is a DIY project for him. I'd like to but I think he would just sit and suffer. He seems to need my help. I feel guilty enough now. That might be worse but still freeing.

Janet (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 6/5/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/5/2014 Herceptin (trastuzumab) Chemotherapy 8/5/2014 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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Aug 25, 2018 04:39PM ALwayssunnysomewhere wrote:

I’m 55 and went into early menopause at 41. Mainly because of endometriosis.

Sex life non existent for about 6 years.

But I started having pain and was literally unable to sleep


So my new doc a cna took a look and said your tiny and irritated because you have narrowed and atrophied.


Also I habitually do kegels. I thought it was helping things. She said I need to cool it with that.



She also noticed my clitoris was small.


Told me try the intraRosa dhea vaginal inserts.


It works.

They have a card that comes from intraRosa I use that makes this free.

The pain is gone. It has made me build more muscle and yes it’s easier to orgasm or at least get pleasure clitorally.


I’m not sure about intercourse. But you can orgasm other ways.

The one thing also is my skin looks great.

It does something like replenish moisture.


The one down side is a bit of emotional up and downs like bad pms.

At the beginning only. It hits like a fog than you think about what you felt like with pms.

I’ve been doing this now for 1 month.


So after I started feeling emotional I didn’t like that so I alternately used Carlson’s vitamin e

Vaginal inserts (ebay &amazon both carry).

One day intraRosa one day Carlson’s e.

I’m feel like you have to be consistent because I’m feeling great down there.


I can’t speak to intercourse but sexual pleasure is not a problem.








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Aug 26, 2018 03:09PM ALwayssunnysomewhere wrote:

Ladies tell your doc to prescribe intraRosa dhea.


And as far as your hubby goes.


If he doesn't understand why your body is not the same as it was when you were 20.

Find a good divorce attorney.

He must be a self indulgent bum.

There are a million ways to reach the peak and it's not about just about the penetration.

They do sell silicone vaginal dilators I suggest you get the smallest one first.

Use a vibrator while it's inside maybe also use a slippery lubricant I have a great one I got called shibari imtimate lubricant in time you can get vaginal orgasms for sure.


I have them all the time.

But if sex hurts absolutely say not interested and suggest that you try something different.

Give him a grapefruit blowjob.

He should be doing whatever you want. Including getting on his knees massaging your feet.

I noticed that my clitoris is definitely more sensitive again so it's better for me.



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Aug 26, 2018 04:17PM Trishyla wrote:

Alwayssunnysomewhere

I don't know what kind of BC you have since it's not listed, but if you have hormone receptor positive cancer I've been told you should NEVER use any product containing DHEA, like Intrarosa. DHEA is a precursor steroid that converts to estrogen and progesterone in the body.

If you have triple negative cancer, that's a different story, but you should still clear it with your oncologist. Mine told me she would never allow me to take anything with estrogen in it, no matter how low of a dose. It's just too risky.

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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Aug 26, 2018 05:32PM - edited Aug 26, 2018 05:36PM by TWills

This Post was deleted by TWills.
Dx 11/2016, IDC, Left, 4cm, Stage IIB, Grade 3, 1/14 nodes, ER+/PR+, HER2- Surgery 12/13/2016 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right Chemotherapy 2/2/2017 AC + T (Taxol) Surgery 7/10/2017 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 7/31/2017 Whole-breast: Breast, Chest wall Surgery 8/27/2017 Hormonal Therapy 11/8/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/2/2018 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Aug 27, 2018 10:16AM - edited Aug 27, 2018 11:19AM by jaycee49

Trishyla, when do you say enough is enough? I have had so many UTIs that they seem continuous. Sometimes, I just want to give up. Would using DHEA be worth it then? It's so easy for doctors to say, oh, no, you can't use that. They are not the ones suffering with side effects. That is truly my pet peeve with doctors: their attitudes about side effects. I love the expression, "usually well tolerated." What does that mean? The suffering will be not too bad? Still suffering but minor? I'm not into suffering. I'm not into pain. And if I have to take a risk to avoid pain, I will do it. My decision. Where is the research that shows using DHEA will cause progression?

Thanks for the info, Alwayssunnysomewhere. Will I say the above tirade to my MO next time I see her? Probably not.

Janet (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 6/5/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/5/2014 Herceptin (trastuzumab) Chemotherapy 8/5/2014 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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Aug 27, 2018 10:34AM - edited Aug 27, 2018 10:38AM by Lula73

trishyla- most if not all of the MOs have not been educated on the Intrarosa. They hear DHEA and they hear nothing more after that because they've shut down. I would ask them if they have seen the medical liaison or rep for the Intrarosa. If not, I’d ask them to contact them and request an inservice before you tell me no on advanced you are not educated about. Here's what they DON’Tknow that GYNs in the know do:

Intrarosa is local treatment for the vaginal tissues that stays local. How do we know? No blood clot boxed warnings like Estrace, Premarin and the estrogen ring have and undetectable changes in hormone levels from blood work also unlike the other options.

It's not just about sex but overall genital health. Atrophy and tissue frailty affect urinary tract health, anal health, vaginal health and vulva health. UTIs, anal fissures, stinging/burning discomfort on the vulva that feels like hundreds of little painful paper cuts, and pain just when wiping or washing are not normal and not ok. And they all have 0 to do with sex. that's just everyday living/existing. I wonder if we told our male MOs that it “feels like pissing razor blades" if it would make a difference (other than a stat STD test).

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal Hormonal Therapy 1/2/2018 Femara (letrozole)
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Aug 27, 2018 12:52PM jaycee49 wrote:

Lula, thanks for all that great info. The substitute gyn I talked to last week seems like she has maybe seen a rep or done the inservice. She was very positive about using Intrarosa. I need to look into it more. Where do you get it, cost, and does insurance pay. I've looked at it before but when I saw this: "Use of exogenous estrogen is contraindicated in women with a known or suspected history of breast cancer. INTRAROSA has not been studied in women with a history of breast cancer." on their website, I backed away. I'm not sure if a drug rep would be that impartial about it. I need opinions from regular (neutral) users.

The way I describe the pain to DH is by comparing it to something he has felt, something he calls RAW BALLS. He does a lot of athletic stuff where he gets sweaty down there and the rubbing when wet causes a severe and very painful irritation. That's as close as I can get to something he understands.

My whole in-laws family are in NC. Love that place.

Janet (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 6/5/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/5/2014 Herceptin (trastuzumab) Chemotherapy 8/5/2014 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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Aug 27, 2018 02:41PM Lula73 wrote:

Jaycee- Intrarosa has not been studied in BC patients so the FDA makes them include the part about exogenous estrogen being contraindicated, etc. That’s where the science and understanding how it works in the body comes in. Technically intrarosa is not exogenous estrogen. That’s the key. That’s where at least looking at the data comes in and possibly meeting with the medical liaison. The reps at that level of specialty are not your average antibiotic/antihistamine pushy rep that are a dime a dozen. They are highly specialized and educated. Their role is more of clinical discussion and education vs pushing meds. It would not surprise me if they eventually did studies or case studies were written up by individual doctors about it. Right now with it being newer to the market the studies are all based around comparison to placebo and safety. I have no idea how much it is as I’m still using the sample pack I was given - there’s a lot in there. It requires a prescription and there is a coupon card that takes the copay down to either $0 or $25 I can’t remember which and I’m not at home to look. It takes the copay down to the stated amount even without insurance covering it. I’ll call check for you when I get home.

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal Hormonal Therapy 1/2/2018 Femara (letrozole)
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Aug 28, 2018 05:40PM - edited Aug 28, 2018 06:09PM by Trishyla

Hey Lula, if that's the case, then yippety freaking doodah!

I've been desperately searching for something to give me some relief from the dryness, the atrophy, the urinary issues and everything else that goes along with what I call my "chemo induced supermenopause". I had to stop taking anastrozole after just one month because it did such a number on my bones (osteoporosis) and my joints (agonizing, debilitating trigger finger)

I'm working on getting my BMI down to the low twenties and my weight down to what it was in my thirties. I also do weight bearing exercise five days a week. That should get my reoccurrence risk down about as low as an AI would, plus I'll be healthier. But I had resigned myself to having nothing in the way of a sex life.

If the Intrarosa is as safe as you say, I would be thrilled to start using it. I just need to find a new gynecologist, since I lost my last one due to an insurance change.

Thanks again for the info, Lula. You're always a treasure grove of useful information and encouraging advice.

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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