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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 09:45AM - edited Feb 9, 2016 09:04AM 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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Page 142 of 144 (4,296 results)

Posts 4231 - 4260 (4,296 total)

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Jan 2, 2020 08:26AM jaycee49 wrote:

Karen, I remember when Imvexxy was the first to use the formulation of Vagifem after the company lost its patent. I was hoping it would be cheaper. The price of Vagifem went up consistently and by a lot when I used it 20 years ago. Of course, my perspective on price has changed since I started taking Ibrance ($14,000 a month with $634 co-pay). I'm not sure Imvexxy is much cheaper than Vagifem. I would be willing to buy either if my MO agreed to estradiol. I was thinking doctors might be more open to estriol. We'll see. I have been known to get yeast from estrogen. Not sure why the ring would cause it more then the tablet. I did get yeast from Vagifem. It's one of the reasons I stopped using 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 6/4/2014 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 2/14/2015 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) Hormonal Therapy 4/1/2016 Femara (letrozole) Targeted Therapy 4/1/2016 Ibrance (palbociclib)
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Jan 3, 2020 09:55AM InnaB2018 wrote:

My gynecologist recommended Luvena moisturizer. It really works! Bonus: you only need to use it every three days, not even every day.


Dx 3/26/2018, IDC, Right, 3cm, Stage IIA, Grade 3, 1/18 nodes, ER+/PR+, HER2- Surgery 4/24/2018 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/1/2018 AC + T (Taxol) Radiation Therapy 10/7/2018 3DCRT: Breast, Lymph nodes, Chest wall Surgery 5/21/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 5/22/2019 Prophylactic ovary removal Hormonal Therapy Arimidex (anastrozole)
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Jan 23, 2020 08:30AM - edited Jan 23, 2020 02:31PM by Raelan

Hi Ladies - I've been away from the boards for awhile living life and doing my best to deal with the vaginal issues that come about from being slammed into menopause overnight. I'm now 8 years out from my diagnosis and have been on some form of an estrogen inhibitor for 7.5 years. I was on Tamoxifen initially, then moved onto an AI after 2 years once my MO was convinced I was truly menopausal. 2 years in to the AI I was having all sorts of vaginal/urinary issues, and after much testing to rule out as many causes as possible, was diagnosed with vaginal atrophy. At that point, my MO was comfortable letting me use estradiol cream and switched me back to Tamoxifen. I also underwent a Mona Lisa treatment (series of 4 treatments spaced closely together) that really made a difference in my vaginal tissues....more moisture and plumped them up. I'll be on Tamoxifen until I hit my 10 year mark.

Fast forward to now. Had my annual Mona Lisa “booster" about 4 months ago, and while it helped I don't think one annual update a year is enough to keep me ahead of the curve. The treatments are expensive and I am a bit concerned about the long term effects of zapping your vagina on a regular basis with laser beams....particularly if I need to do so several times per year as a BC survivor. So I'm back to trying to figure out different/new options...which is where this amazing board comes in.

My current routine includes a .25 gram (pea sized) dab of estradiol cream on the outer labia and urethra every other night. Every morning I insert 1/2 of a Carlson Key E suppository. I also take several supplements daily to help fend off UTI's: AZO cranberry tablet, 1 t. of powder D-Mannose, and Rephresh Pro-B probiotic.

My sex life with my DH is pretty pathetic. I have zero drive and while we do have intercourse occasionally, it's not comfortable for me (probably because it's so infrequent). He's amazingly understanding, and has never had a strong drive either, so we've sort of settled into this state of complacency. I know if we had sex more frequently it would help with the atrophy (ie more blood flow to the tissues, keeps vagina stretched out), but I think you all understand the vicious cycle. I really do want to make this a priority in our lives, but feel really stuck sometimes.

So, I'm going to start following this board to see what successes others are having with different treatment protocols. I feel that at a minimum I need to up my estrodial dose a bit (discussion for my PCP), and may need to try some different vaginal moisturizers. I’m also interested in what some of you had to say about localized testosterone and may check it out.Other than that, I'll keep researching and listening.

You ladies are all so amazing and I'm always blown away by the degree of information I get from these boards that is no where to be found out in the mainstream medical community


Dx 3/10/2012, IDC, Right, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 4/3/2012 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 5/3/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/7/2012 Breast, Lymph nodes Hormonal Therapy 10/7/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/20/2014 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/12/2014 Reconstruction (right): Latissimus dorsi flap Hormonal Therapy 1/3/2015 Arimidex (anastrozole) Surgery 2/9/2015 Reconstruction (left); Reconstruction (right)
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Jan 27, 2020 12:47PM 2002chickadee wrote:

Hi all,

I've been on Imvexxy 4mcg since September 2019, after about 3 months of using Hyalogyn 4x/week. The Imvexxy was approved by my MO, even with me being relatively high-risk due to recurrence. I continue to use Hyalogyn 2x week and Imvexxy 2x week. I've also started using pantyliners on the nights I have inserted something, then use a small layer of Acquaphor to keep the panty liner from drying me out. My husband and I haven't rebooted our intercourse (which was super painful) -- I have a torn rotator cuff and he has a broken shoulder, don't ask! we are a mess in my house! but we can't really manage -- however I have definitely seen a difference in my vaginal comfort. It still takes a lot longer to get aroused than pre-BC, but I can have a decent orgasm now if I'm patient. My GYN (new, I switched because my old one just shrugged at me when I raised these issues) said I will continue to see improvement from the Imvexxy.

I agree these issues are so, so difficult and fill us with a big sense of loss. Sometimes you don't know if you should just give in and give up, or keep fighting for improvement. I'm happy I kept pushing for this to be better.


DX'ed at age 41 on my first mammogram Dx 1/11/2018, IDC, Right, Stage IA, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 2/6/2018 Mastectomy: Right; Reconstruction (right): DIEP flap Chemotherapy 3/23/2018 CMF Dx 9/2018, IDC, Right, <1cm, ER+/PR+, HER2- Surgery 10/4/2018 Lumpectomy: Right Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Feb 25, 2020 05:45PM Rocket wrote:

I got a call yesterday from my new gynecologist with the results of my Pap test. She said it showed abnormal cells. She now needs to do a colposcopy. She said it would be impossible currently with my level of vaginal atrophy. She had prescribed Intrarosa for four weeks so that the procedure won’t be as painful. I am scared to use that medication. I am still on Anastrozole. She said it is the only way to do the procedure. I am scared to use the med and I am scared of cervical cancer. I had a total hysterectomy but they left my cervix because it would have been a longer recovery.

I hate this!!!!! I am a bit overwhelmed with all of this

DX 1/5/10 IDC and Lobular 3 tumors rt breast, multicentric 3.9cm, 2.1cm, 1.7cm; bi-lat mastectomy 1/22/10 no recon, 2 - TC, 1 - AC; 36 Rads, Oncotype 16; Arimidex; Hyst/Ooph 8/11/10; lymphedema arm & trunk Dx 1/5/2010, ILC/IDC, Right, 3cm, Stage IIA, Grade 2, 0/13 nodes, ER+/PR+, HER2- (FISH)
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Feb 25, 2020 08:47PM anotherNYCGirl wrote:

Rocket, - I had a similar situation re abnormal cells/vaginal atrophy, etc.

I had been using Revaree ( https://hellobonafide.com/products/revaree ) twice a week , however, to prep for the colposcopy my gyn suggested I use it 10-14 days in a row. I assume it helped, Maybe you can ask about trying that?

(I eventually had to go for another colposcopy, and the specialist who i saw then suggested a small amount of estrogen cream twice a week, saying it will allow her to better monitor the cervix. )

Never a dull moment =/


Dx 1998, DCIS, Stage 0 Surgery 3/18/1998 Lumpectomy: Left Dx 6/2000, ILC, Stage IA, 0/3 nodes, ER+/PR+, HER2- Surgery 7/11/2000 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 8/1/2000 CMF Hormonal Therapy 2/11/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 2/12/2001 Breast Hormonal Therapy 2/12/2006 Femara (letrozole) Dx 2/2014, ILC, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 3/25/2014 Lymph node removal: Left, Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 5/2/2014 AC + T (Taxol) Surgery 11/20/2014 Reconstruction (left); Reconstruction (right) Surgery 1/14/2015 Reconstruction (right): Tissue expander placement Surgery 5/28/2015 Reconstruction (right): Latissimus dorsi flap, Silicone implant Surgery 2/22/2016 Reconstruction (left): Fat grafting, Nipple reconstruction; Reconstruction (right): Fat grafting, Nipple reconstruction
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Feb 27, 2020 08:07PM bella2013 wrote:

Rocket,

I use Intrarosa. My gynecologist, MO, and my Internist all feel comfortable with my using it. It is not systemic plus being on Anastrazole we are well protected.

Wishing you benign results on your colposcopy.

Bella2013


Diagnosed at 60 years old. Oncotype Score=14. Dx 12/4/2017, IDC, Left, 4cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 1/3/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 2/21/2018 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
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Mar 1, 2020 12:13PM Rocket wrote:

Hey Ladies,

I am scheduled to have the colposcopy at the hospital on the 11th of March. She is going to use heavy sedation instead of me using Intrarosa. My husband and I just don't feel comfortable with it. I had three large 80% estrogen positive tumors in the same breast but all different quadrants - both ductal and lobular. Go figure! It was a miracle that my lymph nodes were clear. I had an 83% chance that they would have found spread to my lymph nodes and not even the sentinel nodes were affected. Unfortunately the surgeon who did my bi-lateral mastectomy damaged my brachial plexus and I suffer with chronic nerve pain as well as several other issues. I have been through a lot in the last ten years. I also have an arrhythmia and was wearing a heart monitor last week. I don't have the results of that yet. I am so tired of doctors, treatments for various issues, etc. This colposcopy has me freaked out. I had one in my 20s as my mother took DES when she was pregnant with me. It puts me at higher risk for cervical cancer and vaginal cancer. I also have high risk HPV infection. I am just worried that when I wake up from it I will have a lot of pain. She said my vaginal opening is very small - like that of a virgin. Well I haven't had intercourse in 9 years so I am sure that it is. The instrument they use for the colposcopy along with the speculum would be quite a bit larger than the vaginal opening. It's going to hurt! Not looking forward to this - not that anyone would.

I appreciate your thoughts and wisdom ladies. Thanks for listening.


DX 1/5/10 IDC and Lobular 3 tumors rt breast, multicentric 3.9cm, 2.1cm, 1.7cm; bi-lat mastectomy 1/22/10 no recon, 2 - TC, 1 - AC; 36 Rads, Oncotype 16; Arimidex; Hyst/Ooph 8/11/10; lymphedema arm & trunk Dx 1/5/2010, ILC/IDC, Right, 3cm, Stage IIA, Grade 2, 0/13 nodes, ER+/PR+, HER2- (FISH)
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Mar 2, 2020 05:53AM HikingLady wrote:

Rocket Because of the worry about your discomfort during the surgery, I see that others above my post here have also suggested using Estradiol cream (Rx) for just 10 days pre-surgery. Has your OBGYN suggested this as a pre-surgery comfort measure? Maybe even just a few applications might make a big difference. Maybe that, or something similar is already part of your pre-surgery preparation plan? It turned around my vaginal atrophy quite quickly. The usual dosage is daily for 1 week, and then maintenance dose is 3x/week, 1g. I use the type in a tube, and it's measured in an applicator, and I can use some of the measured dose each time to spread around other fragile skin in the area.

My ongoing use of it is approved by 2 oncologists in a row, who say that research satisfies them it's not systemic, locally absorbed only. Not only does it make my vaginal tissue more comfortable, but it's made the tissue of my whole perineum less fragile, and has eliminated urination urgency.

By the way, I've had a colposcopy, and everything was negative/just fine, and my recovery from it was quite easy.

In my case, the cause for concern turned out to have been a cervical polyp in a hard-to-reach spot (it had to be removed surgically in a day surgery, under sedation; that's ordinarily an in-office procedure, but not mine...), and that had caused unusual spotting.

Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/9/2003 Lumpectomy Radiation Therapy 6/10/2003 3DCRT: Breast Hormonal Therapy 8/8/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/7/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Mar 2, 2020 07:18AM Rocket wrote:

No my gynecologist never recommended anything else. I am just not comfortable with using vaginal estrogen. My anxiety regarding this is huge despite some gynecologists feelings that it is safe. I don't have a lot of trust in doctors anymore. I had three large cancerous tumors all growing at the same time, and I had pointed those lumps and thickened areas out to my gynecologist for five years. He kept saying, "Yes you have fibrocystic breast tissue." He never offered me another test like an ultrasound or MRI despite the fact that I had extremely dense breast tissue (I was uninformed at the time regarding the issues surrounding dense breast tissue). The mammograms never showed the tumors at all. I won't even go into the nightmare that was my breast surgeon! It was a horribly traumatic experience for me.

I will survive this procedure - even if I have pain afterward. Lord knows I have survived much worse. Thank you for your kind thoughts!

DX 1/5/10 IDC and Lobular 3 tumors rt breast, multicentric 3.9cm, 2.1cm, 1.7cm; bi-lat mastectomy 1/22/10 no recon, 2 - TC, 1 - AC; 36 Rads, Oncotype 16; Arimidex; Hyst/Ooph 8/11/10; lymphedema arm & trunk Dx 1/5/2010, ILC/IDC, Right, 3cm, Stage IIA, Grade 2, 0/13 nodes, ER+/PR+, HER2- (FISH)
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Mar 3, 2020 11:58AM CindyNY wrote:

Rocket- I'm hoping that because you will be sedated in the hospital, upon waking you won't be in much pain.

I had cryotherapy, freezing of the cervix, with no sedation. It was painful. Upon getting home I slept for 3+ hours and when I woke up I felt ok - not like running a marathon good, but ok.

Best wishes.

dx at 58, no family history, onco = 19 Dx 10/6/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 11/1/2017 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 11/13/2017 Lumpectomy: Left Radiation Therapy 12/26/2017 Whole-breast: Breast Hormonal Therapy 3/1/2018 Arimidex (anastrozole)
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Apr 10, 2020 08:36AM moth wrote:

this isn't an intercourse question but a UTI q but there's so much overlap I thought you might have some tips for me

When I was young and foolish I had a few uti and all were linked to not going to pee immed after sex. Silly silly woman.

Now it's not sex. I'm post menopause.

-Perineal area is fragile and dry.

-I have a lung met which causes coughing and that bladder sphincter lost its oooomph ages ago. So I have to wear pads. I've tried disposable -seem to irritate. Got a UTI in March. Switched to cloth, change them religiously. Seemed better but today I have those early signs. Bit of a spasm, woke up feeling need to pee but only had tiny amnt

-I have bone pain from chemo and one of the suggestions so I don't max out my pain pills is warm baths. I pee after but I think it's risky to soak in bath with a floppy urethra.

Oh and I'm in a clinical trial and everything pharmaceutical or supplement has to be approved by a hundred people :(

What advise? What would you add? I'm wondering about ordering a peri bottle. Washing with washcloth maybe too rough and yet want everything super clean after each toilet use.

Moisturizer? Can it be a lube? I have one of those watery runny slippery ones. Or should I use something else?

Halp!

Initial dx at 50. Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy External
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Apr 10, 2020 09:06AM jaycee49 wrote:

moth, I have your issue in spades. Go back and look for my posts in this thread. I had non estrogen moisturizers working for about a year but they don't any more. I just started using topical vaginal estrogen I get at Amazon from a company called Bezwecken. Since you have low estrogen reception, you may even be able to get a doctor to prescribe topical estrogen. I could not. PM me and I can send you a spreadsheet I made of all the moisturizers I have used. (Lube is different from moisturizers.) You need to start doing something ASAP. And be consistent. It usually takes me about four months of every night use to get anywhere.

As far as getting antibiotics, I always keep a few from each Rx or keep ones that don't work on a particular infection and you get switched to another. Over the years, I have collected quite a stash. And an infection need to be cultured to be sure the antibiotic you are using will work on the current infection. I buy sterile containers (like doctors' office use) and bring my samples to them. No figuring out how to pee there. I also buy the dipsticks they use to test my sample myself before I take it to them. I've been dealing with this for about 20 years so I have lots of tricks.

The problem we have with the current virus situation is that other issues get pushed back and ignored. I feel bad trying to get other things taken care of. It's a tough spot.

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 6/4/2014 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 2/14/2015 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) Hormonal Therapy 4/1/2016 Femara (letrozole) Targeted Therapy 4/1/2016 Ibrance (palbociclib)
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Apr 10, 2020 10:07AM moth wrote:

Thank you Janet. I will have a look through your posts to learn

Initial dx at 50. Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy External
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Apr 10, 2020 02:07PM corky60 wrote:

I was constantly getting one UTI after another. Every 3 weeks I had one. Then I found a urologist who prescribed Methenamine Hippurate. Since I started using it a couple of years ago I haven't had one UTI.

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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Apr 10, 2020 02:17PM corky60 wrote:

Here's a question for you. I have yeast under the hood of the clitoris. Diflucan doesn't help. It's like a tunnel or pit that keeps producing. I bought some OTC yeast infection ointment. I have to squeeze the yeast out and then apply the ointment there. And even that hasn't helped yet. A dr that I saw said she had never seen anything like it. The yeast makes the clitoris itch. There's no yeast in the vagina. This is driving me insane.

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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Apr 10, 2020 02:51PM glostagirl wrote:

Greetings all, I'm wondering if anyone has used either a CBD or THC infused oil lubricant.

If you have, perhaps share your results and favorite sources. Thanks, GG.

...."We must see all scars as beauty. ....Because take it from me, a scar does not form on the dying. A scar means, I survived." Chris Cleave, Little Bee Dx 1/5/2008, IDC, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR-, HER2- Surgery 2/21/2008 Lumpectomy: Right; Lymph node removal: Right, Sentinel Surgery 3/26/2009 Lymph node removal: Right, Sentinel; Mastectomy: Right; Reconstruction (right): IGAP flap Surgery 6/19/2012 Reconstruction (right): DIEP flap Surgery 11/13/2012 Reconstruction (right)
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Apr 10, 2020 03:29PM jaycee49 wrote:

Corky, I'm just wondering if there might be any connection between the Methenamine Hippurate and the yeast. Seems like you've been using that for a while. Probably not but just a thought.

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 6/4/2014 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 2/14/2015 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) Hormonal Therapy 4/1/2016 Femara (letrozole) Targeted Therapy 4/1/2016 Ibrance (palbociclib)
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Apr 10, 2020 04:19PM corky60 wrote:

Thank you jaycee49. I don't think that this is the right time to pursue that theory. The doctors don't want us in their offices. I can't see the one I saw in the urgent care clinic. Many of the urgent care clinics have been dedicated exclusively for Covid 19 patients. But I will look into it as soon as the coast is clear.

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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Apr 10, 2020 04:30PM moth wrote:

corky, are there no telemedicine doctors? All the family practice offices here have moved to telemedicine.

If necessary they can even send you a testing swab in mail. There are nursing school video school instructions how to collect a sample and you could do it yourself. Then you mail to the lab and they can tell what type of yeast and what appropriate treatment is. These days we have to be very creative and honestly this isn't that hard. Also, your doctor might not even want a smear. They may just have a better idea how to treat this.

My family practice is still open for everything through telemedicine & they definitely do NOT want us to ignore other issues, they just don't want us coming in. They just book tele appointments except for injections & a handful other rare things. I just spoke to my GP on Monday.

Initial dx at 50. Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy External
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Apr 11, 2020 12:52AM runor wrote:

Moth, when I was fighting UTIs in my younger life, I took dolomite and zinc plus large amounts of vitamin C. The idea being that you pee out the vitamin C your body can't use, so it acidifies your bladder, making it more hostile to invaders. Now, like Jaycee says, I have to use some estrogen cream to keep those tissues in fighting shape. I smear some around with my finger. I also smear around coconut oil but man...that stuff can be hard to handle! If you feel okay using an estrogen cream, it might be a game changer. But like Jaycee said, it will take some time to get things back in working order. I hope you get a handle on it. A UTI is truly miserable. I also wear cotton pantyliners with a quiltedf layer of bamboo. Know a great small producer here in BC who makes them!  

Corky, I have never heard of such a thing, squeezing yeast out of anywhere! I would be freaking out. My first reaction would be that there is some physical problem causing your body to make gunk that requires squeezing. It sounds like pus. The product of inflammation or irritation.  My mind immediately thought, oh, she's got a tiny chunk of hay caught in there! Because tiny chunks of hay or an errant piece of wheat can cause all sorts of misery when lodged for a long time in a tight spot they don't belong! Of course, maybe you don't ride horses and deal with making crops so this might not be likely in your case. Could a hair be somehow jammed up there? That just seems too weird. I am sure you've taken a glob of vaginal yeast med and smeared it into your clitoris, getting it into the bothersome area. If you find the vaginal preparation not working / sticking, you could switch to a cream made for athlete's foot. READ THE LABELS!!!! Some creams have different anti-fungals, some have the same as vaginal yeast creams. I think it's clotrimazole that you want to look for in an ahtlete's foot cream. Good luck, that sounds beyond miserable!

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 7/4/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 11, 2020 08:02PM moth wrote:

runor, can you dm me link to the pad maker pls?


being on this study means I can't take anything without clearing it with the study people, not my MO, but the study people. & they generally will not approve anything that's a supplement in a tablet. I was hella surprised when B6 & l-glutamine for neuropathy prevention were approved. I will try the topicals & moisturizers & fluids & speak to my MO when I see her tomorrow.

also, since this is the mojo thread, as a stage 4 dx'd in Feb, I don't think I ever want to have sex again which seems mean but also, just nope. stage 4 peeps wanna chime in? does that get better or not? I feel like I *should* but at the same time I'm super resistant to any *should* programming

Initial dx at 50. Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy External
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Apr 12, 2020 08:55AM Betsy_Johnson wrote:

This Post has been removed by the Community.
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Apr 12, 2020 10:13AM - edited Apr 12, 2020 10:25AM by Miriandra

Hi Betsy's husband! I hope you're doing well.

The extent of male-centricity in medicine is something that is coming to the surface fairly recently. It is not an accusation or blame, but rather a realization of where we can do better so as not to succumb to subconscious biases. Men haven't let female medicine lag behind because they wanted women to suffer. It's because female medical issues don't occur to them, since they're not problems for them directly. And since most medical foundations and research funding is managed by men, the issues that hit closest to home for men will TEND TO (not ALWAYS) get funding first. It's no one's fault, it's just recognizing human nature and being mindful to work against it.

https://nypost.com/2018/04/21/medical-research-has...

Bias In Medicine: Last Week Tonight with John Oliver (HBO ...

The white male has been the standard point of reference for medical research for almost as long as there has been medical research. Even crash test dummies have been male - leading to shoulder straps on seat belts actually causing injuries for women. (https://www.citylab.com/transportation/2019/07/car... ) The result of using white males predominantly as research subjects has led to many medicines that work very well for white males, but can be less effective for blacks or women. Remember the big Ambien scandal over women metabolizing the active ingredient differently and more slowly? Also, heart medications can work differently in black vs. white patients. This is stuff that has only become mainstream in the last decade or so. It sill take a bit until we get medicine caught up for other demographics.

Again, this is not to accuse men of intentionally focusing on white male patients and white male medical issues to the detriment of women and minorities. It's just recognizing that most research - which has been funded by male-led foundations and institutions - has naturally been prioritized by a filter biased towards the people leading those institutions. They don't do it because they're mean - they do it because it hadn't occurred to them to do otherwise. "Why research menstrual pain? I don't get cramps." Now that we're aware of the problem, we can choose to focus on those areas that have been backburnered.


Dx 5/31/2019, DCIS/IDC, Left, 1cm, Stage IA, 0/1 nodes, ER+ Surgery 8/14/2019 Lymph node removal: Sentinel; Mastectomy: Left
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Apr 12, 2020 10:49AM - edited Apr 12, 2020 11:02AM by runor

Miranda, you were very kind and measured in your reply and I admire that. I am not feeling nearly as benevolent. Here is my skeptic's reaction.
I think, with only one post, that Betsy Johns is not a real member with a real problem. If she is, I scrolled back several posts, and could not find any posts from anyone named Betsy Johnson in this thread. Yet her' husband' shows up here to make a post? I have seen these kinds of posts before. They are, in my opinion, trolls.  And signs his name Randy Johnson. Come on. Really? Randy Johnson? How about Eager Wanker? Or Happy Weenie? Perhaps Dick A. Lone.

To make sure I am not wrong (because I always might be wrong, I acknowledge this) I will scroll back further to see if there are any posts from a Betsy Johns. I will do a member search for Betsy Johns. If I find nothing I will conclude that Mr. Randy Johnson is a troll with a borderline personality disorder who gets off reading about the very real problems women have with their sex lives and cancer. If I am wrong, I will delete this paragraph.

Edited to add: did search. No Betsy Johnson could be found. No posts from any such person in this thread for the last two pages. No one, as far back as October of last year, made any remarks about' this would be cured if it was a problem for men' (not that I could see on my quick read over). My conclusion: troll.

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 7/4/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 12, 2020 11:25AM jaycee49 wrote:

runor, the one post by Betsy was the one by Randy. That's it. You can see it on her profile.

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 6/4/2014 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 2/14/2015 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) Hormonal Therapy 4/1/2016 Femara (letrozole) Targeted Therapy 4/1/2016 Ibrance (palbociclib)
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Apr 12, 2020 11:38AM Miriandra wrote:

"She" joined 4/2/20, no diagnoses or conditions listed, .... Hmm, I think you ladies may be right. I apologize for feeding the troll, but I hope you enjoy the John Oliver video anyway.

Winking

Dx 5/31/2019, DCIS/IDC, Left, 1cm, Stage IA, 0/1 nodes, ER+ Surgery 8/14/2019 Lymph node removal: Sentinel; Mastectomy: Left
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Apr 13, 2020 12:44PM runor wrote:

Miriandra, no apology required! Most of us are here for a helpful purpose. But every now and then my spidey sense starts to tingle and tells me something's fishy.  'Randy" was addressing a topic that hadn't even come up in a while. At least not that I noticed, and I did look (albeit rather quickly and skim reading).

Jaycee, I did try to look up any Betsy J, found nothing, so she was not genuine. Is that what you are saying? Are you agreeing with me? Are you disagreeing wiht me? HOW DARE YOU!!!!!!!

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 7/4/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 13, 2020 01:45PM hapa wrote:

moth - what are the study people doing to do if you take something that they don't approve? It does not behoove them to kick you off the study at this point because you are already part of the "intent to treat" population. If they kick you off, it makes their study drug look that much less effective. You should talk to Shetland Pony about study nurses and how to deal with them.

Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, 3/18 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/27/2018 Herceptin (trastuzumab) Targeted Therapy 3/27/2018 Perjeta (pertuzumab) Chemotherapy 3/27/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/22/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 10/22/2018 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 12/20/2018 Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Nerlynx
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Apr 13, 2020 03:39PM jaycee49 wrote:

runor, of course I am agreeing with you. It just didn't have to be so much work. Just click on "her" name and see her profile. Her recent posts are listed. There is just the one by "him." (I will not be mistaking him for a feminist.)

Marianda, I liked reading your post regardless. Nice to have reasonable words spoken so thoughtfully.

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 6/4/2014 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 2/14/2015 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) Hormonal Therapy 4/1/2016 Femara (letrozole) Targeted Therapy 4/1/2016 Ibrance (palbociclib)

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