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Topic: Vaginal Atrophy solution that is working for me!

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: May 5, 2020 02:05PM - edited Feb 24, 2021 07:03AM by Jinx27

Jinx27 wrote:

Hello all!

Ive been a member for quite some time now and wanted to post about my sexual side effects of my treatment and what Ive been doing to combat them.

I was diagnosed with my ER/PR+ breast cancer and have chosen to take an aromatase inhibitior along with Lupron (ovarian suppression ) injects for the next 5-10 years.

My onco just barely prepared me for all of the changes that I would have living the next 5-10 with lowered estrogen (menopause) as a 30 year old something. She mentioned vaginal dryness but I didnt know that the dryness really meant atrophy! I also suffered from strong vaginal odor without an infection. This also due to the atrophy.

I initially knew something was wrong when I had intercourse and it was terribly painful, I had small microcuts in my vulva and inner vagina due to weakening of my vaginal tissue, not knowing how to deal with this I went online.

Initially I was interesting in the Mona Lisa Touch or Petite Lady procedure that alot of women post about on here but it wasn't in my price range at all.

I stumbled upon a product call NeuEve; a estrogen free vaginal suppository created by a gynecologist for women.

Neu Eve Website

NeuEve suppositories and cream help ease menopausal discomforts: vaginal odor, dryness, atrophy, itching, burning, painful sex, and bacterial vaginosis.*

100% all-natural food grade ingredients : Organic palm oil*, organic coconut oil, organic beeswax, organic tapioca starch, organic potato starch, evening primrose oil, organic sea buckthorn fruit oil, organic lavender essential oil, organic orange oil, organic vitamin E (d-α tocopherol), and a proprietary blend of nutrients.

NeuEve is gluten-free, hormone-free and estrogen-free. NeuEve does NOT contain any boric acid, petrochemicals, parabens, BHT, T.E.A, M.E.A, urea, glycols, PEG's, etc. NeuEve has never been tested on animals, and does not contain any animal products.


Customers can choose between three options depending on the severity of their atrophy and age. I emailed her asking for guidance and responded back with a warm and informative response. I chose the level 2 suppository due to my age.

She stated the following supplements help with atrophy; OMEGA 3, OMEGA 7, Vitamin D.

She also mentioned purchasing a set of Magnetic Vaginal Dilators and using them twice a day if I have pelvic pain.

I have been using NeuEve for one month along with taking the above supplements and have seen a huge improvement. I use lubrication during self pleasure which helps but I have not had any pain or microcuts in or around the vulva or inside the vaginal canal since finishing my first box of NeuEve.

I used to to have a odor due to the dryness, and a UTI feeling. The odor is completely gone, and the UTI feeling is slowly fading away. I thought Id share here since there are soo many products on the market to choose from.

The price is around $59 for a month supply, if you decide to get a subscription, the cost will be $49 a month. Not too bad. The site recommends using it for 4 months straight, however many women report improvements after one month.

Please feel free to message here with any questions. Im going to continue the product for four months and return back with an update.


Diagnosed at 27 y/o, synchronous bilateral breast cancer. L. Breast : IDC, R. Breast: DCIS. ER 98%, PR 100% Possible mutation. 5-10 yrs hormonal therapy 08/31/2016 Tamoxifen, 02/01/2017- 06/10/2021 AI + OS,Tamoxifen 08/10/2021 -current Dx 9/8/2015, DCIS/IDC, Both breasts, 4cm, Stage IIB, Grade 3, 3/36 nodes, ER+/PR+, HER2- Surgery 11/17/2015 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Chemotherapy 12/31/2015 AC + T (Taxol) Hormonal Therapy 8/27/2016 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin)
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Posts 91 - 109 (109 total)

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Jun 3, 2021 03:45PM Rosie24 wrote:

Hi all, I’m new to this thread and glad to be able to learn from your experiences. I’ve tried one prescription product, Intrarosa and one otc product, Hyalogyn. Some improvement but nowhere near tolerable sex. And the Hyalogyn started giving me a burning sensation so I stopped using it. I just saw my MO today and she recommended Vagifem for a few months to see how it goes. The Letrozole (with Ibrance) is working great on my cancer but this side effect is a doozy. MO said eventually I should see a gyno to assess the extent of atrophy. I am hopeful for this new med but also realistic since it’s been a few years of desert dryness already

Dx 1/23/2019, DCIS/IDC, Left, 3cm, Stage IV, metastasized to liver, Grade 2, ER+/PR-, HER2- (FISH) Hormonal Therapy 1/24/2019 Femara (letrozole) Targeted Therapy 1/24/2019 Ibrance (palbociclib) Surgery 12/4/2019 Lumpectomy: Left Surgery 12/4/2019 Lymph node removal: Sentinel Radiation Therapy Whole-breast
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Jun 3, 2021 05:43PM - edited Jun 3, 2021 05:44PM by kksmom3

This Post was deleted by kksmom3.
Dx 8/8/2018, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 9/30/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Jun 4, 2021 03:32PM sharon0706 wrote:

Hi Rosie. I am right here with you in the Sahara. The only way I was able to have sex was after using hyalo-gyn internally every day for a couple of weeks, combined with lidocaine (prescribed by gyn) around the vaginal opening, combined with uberlube. Even with I'd say my pain was 4/10.

Maybe you've already pursued something like this, but after some research I learned that the hospital where I had chemo has a vulvar clinic. My appointment (that I booked literally months ago) is next week. I can't imagine exactly what they will tell me but I am hopeful. Have you already pursued something like that?

p.s. I also have an e-string. Not helpful for sex but helpful for everyday comfort.

Dx 8/1/2001, LCIS Hormonal Therapy 6/29/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 6/29/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 8/24/2020, ILC, Left, 1cm, Stage IA, Grade 3, 1/1 nodes, ER+/PR+, HER2- Surgery 10/20/2020 Lymph node removal: Left; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/23/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 2/21/2021 Femara (letrozole) Surgery 6/13/2021 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery Prophylactic ovary removal
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Jun 12, 2021 01:46PM Rosie24 wrote:

Hi Sharon,

I haven’t pursued anything more than a couple of products from my MO. I received the generic for Vagifem but now I’m afraid to use it due to the estrogen content and “serious warning” if using it while on Letrozole. Too much googling, ugh. I’m stage 4 but responding very well to treatment and don’t want to mess that up with adding something questionableinto the mix. I think I may go back to the HyaloGyn first and try it daily for a few weeks. I’ll be interested to hear what your appointment with the clinic brings!

Dx 1/23/2019, DCIS/IDC, Left, 3cm, Stage IV, metastasized to liver, Grade 2, ER+/PR-, HER2- (FISH) Hormonal Therapy 1/24/2019 Femara (letrozole) Targeted Therapy 1/24/2019 Ibrance (palbociclib) Surgery 12/4/2019 Lumpectomy: Left Surgery 12/4/2019 Lymph node removal: Sentinel Radiation Therapy Whole-breast
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Jul 19, 2021 12:31PM asimetrica wrote:

Hi! I'm glad I found this thread! Thank you :) I've been on the breast cancer thing since 2016 when I was 34. I started new medication this year because of a recurrence. All these years I've been dealing with vaginal pain during intercourse, dryness, tightness, etc. This year it's gotten worse, so now I know I have to face the issue with more consistency and I'm thinking about trying vaginal dilators... I heard about them from a PT that was treating me for lymphedema some years ago but I didn't purchase them then. Has anyone tried them? Sending love and patience to everyone!

Dx 5/2016, ILC/IDC, Right, 2cm, Stage IIB, 4/40 nodes, ER+/PR+, HER2- (IHC) Dx 1/2021, Right, <1cm, Stage IIIB, ER+/PR-, HER2- (IHC) Targeted Therapy Verzenio Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Surgery Mastectomy: Right Surgery Lumpectomy; Lymph node removal
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Jul 19, 2021 09:44PM MikaMika wrote:

Yes, I tried vaginal dilators and they really made a difference!

I am not a medical professional, but I feel like all women should be recommended to start using them immediately with Tamoxifen or Al. Unfortunately, I started using them only recently, when some damage was already done. But still, I am glad that I bought them!

Dx at 38 Dx 8/2019, ILC, Stage IIA, Grade 2, ER+/PR+, HER2- Radiation Therapy Hormonal Therapy Arimidex (anastrozole)
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Jul 19, 2021 09:52PM sharon0706 wrote:

hello. Has anyone done comparison trials of hyalogyn vs Neueve and, if so would be willing to report back

Dx 8/1/2001, LCIS Hormonal Therapy 6/29/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 6/29/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 8/24/2020, ILC, Left, 1cm, Stage IA, Grade 3, 1/1 nodes, ER+/PR+, HER2- Surgery 10/20/2020 Lymph node removal: Left; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/23/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 2/21/2021 Femara (letrozole) Surgery 6/13/2021 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery Prophylactic ovary removal
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Jul 20, 2021 08:18PM - edited Jul 26, 2021 06:53PM by KBL

I tried NeuEve. I got a bladder infection, which I'm prone to, and stopped after using it two times. I just got Hyalo-Gyn this past week. I've applied it two times so far. I have to say I like it as of right now. It doesn't drip like some do. I have the tube and syringes

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine)
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Jul 21, 2021 08:38AM sharon0706 wrote:

Thanks for the information. I am experimenting with HyaloGyn right now. It sometimes stings for a second or two but that feeling goes away quickly. I like it better than Replens because HyaloGyn is a clear gel. (Replens is a white cream. I didn't like the way it felt or looked when the Replens dripped out the next day.) I am using HyaloGyn mostly daily but I'm not having sex enough yet to know if it's going to decrease pain. I am trying to get an appointment for pelvic floor therapy but everyone around me is booking out into November!

Dx 8/1/2001, LCIS Hormonal Therapy 6/29/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 6/29/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 8/24/2020, ILC, Left, 1cm, Stage IA, Grade 3, 1/1 nodes, ER+/PR+, HER2- Surgery 10/20/2020 Lymph node removal: Left; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/23/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 2/21/2021 Femara (letrozole) Surgery 6/13/2021 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery Prophylactic ovary removal
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Jul 21, 2021 10:12AM KBL wrote:

Yes, it stings for a few seconds for me too. I will report back after I’ve tried fir a month.

It’s crazy how far out things are booking. I’m sorry to hear that.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine)
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Jul 26, 2021 12:34PM emily_mh wrote:

Hi Sharon, I'd love to know how your appointment went if you don't mind sharing.


Also, anyone try Vagisan?

Dx 6/23/2017, Left, 4cm, Stage IIB, ER+/PR+, HER2+ Chemotherapy TCHP
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Jul 27, 2021 10:36PM sharon0706 wrote:

Hi Emily. The gyn was really thorough with her exam and very knowledgeable. She gave me a diagnosis of vulvodynia and I am going to start pelvic floor PT in the fall. Really long wait lists for pelvic floor PT in my zip code.

Here's some of what I learned in the appointment:

- We don't know why certain women are affected, but up to 5-15% of women will suffer from vulvar pain at some point in their life. This is a chronic pain condition and has no malignant potential, but often can be improved.

- There are many medical options for treatment to help achieve improvement and in some women complete relief.

- There is topical treatment as well as oral treatment. Gabapentin (titrating up to max of 4600 mg total daily), SSRIs, and tricyclic anti-depressants in the future as well as topical lidocaine.

- Nortriptyline and Duloxetine are also options.

- Hypertonic pelvic floor muscles are often a common finding in patients with vulvar pain, but often difficult to determine which came first: abnormal pelvic floor muscles vs vulvar pain. Regardless, this often results in contraction of the pelvic floor muscles, particularly those surrounding the vaginal introitus as a result of actual or anticipated pain. Pelvic floor therapy is a crucial component of treatment.

- Treatment involves desensitization techniques in order to have control over muscle tonicity. The standard of care in treatment involves pelvic floor therapy. Often this involves incorporation of dilator therapy or pelvic wands to release pelvic floor knots or trigger points.

- Recommended vulvar care: No vulvar soap. Use of fragrance-free dye-free detergent and body wash and not to be used on vulva or vagina. No panty liners. Underwear free at night time. And no over-the-counter products (she said the hyalogyn I've been using nightly is okay).

Hope this is somewhat helpful. The idea of doing yet another ongoing activity to help my body heal is exhausting, but I know people who have been helped by pelvic floor PT, and I feel like I have to figure this out for my marriage, so I will add it to my to-do list after summer is over.

Would love to hear how this matches or doesn't match what others have learned from their gyns.

Dx 8/1/2001, LCIS Hormonal Therapy 6/29/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 6/29/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 8/24/2020, ILC, Left, 1cm, Stage IA, Grade 3, 1/1 nodes, ER+/PR+, HER2- Surgery 10/20/2020 Lymph node removal: Left; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/23/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 2/21/2021 Femara (letrozole) Surgery 6/13/2021 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery Prophylactic ovary removal
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Aug 5, 2021 04:22PM emily_mh wrote:

Sharon,

Thank you so much for the detailed explanation. I think I will try Hyalogen and start looking for appointments. I ordered some Vagisan but am afraid to try it without talking to my doctor.

thank you again!

Emily


Dx 6/23/2017, Left, 4cm, Stage IIB, ER+/PR+, HER2+ Chemotherapy TCHP
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Aug 7, 2021 08:23PM sharon0706 wrote:

Good luck Emily!

Would anyone who has had success with pelvic floor PT be willing to describe what the treatment included and exactly how it helped you? And what your advice is for someone about to start?

Thanks!
Dx 8/1/2001, LCIS Hormonal Therapy 6/29/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 6/29/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 8/24/2020, ILC, Left, 1cm, Stage IA, Grade 3, 1/1 nodes, ER+/PR+, HER2- Surgery 10/20/2020 Lymph node removal: Left; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/23/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 2/21/2021 Femara (letrozole) Surgery 6/13/2021 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery Prophylactic ovary removal
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Aug 8, 2021 02:50AM MikaMika wrote:

There are several issues that may be addressed to the pelvic therapist. I had treatment for prolapse (early stage). In your case treatment may be different.

Dx at 38 Dx 8/2019, ILC, Stage IIA, Grade 2, ER+/PR+, HER2- Radiation Therapy Hormonal Therapy Arimidex (anastrozole)
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Aug 27, 2021 05:15AM - edited Aug 27, 2021 05:17AM by Jinx27

Just dipping in here to see how everyone is...

KBL, Im happy something is working for you!

MikaMika you are so right, women should be educated about atrophy as soon as they take Tam or AI's.

Diagnosed at 27 y/o, synchronous bilateral breast cancer. L. Breast : IDC, R. Breast: DCIS. ER 98%, PR 100% Possible mutation. 5-10 yrs hormonal therapy 08/31/2016 Tamoxifen, 02/01/2017- 06/10/2021 AI + OS,Tamoxifen 08/10/2021 -current Dx 9/8/2015, DCIS/IDC, Both breasts, 4cm, Stage IIB, Grade 3, 3/36 nodes, ER+/PR+, HER2- Surgery 11/17/2015 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Chemotherapy 12/31/2015 AC + T (Taxol) Hormonal Therapy 8/27/2016 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin)
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Aug 27, 2021 06:47AM KBL wrote:

I went to the GYN last week. She just learned of my extensive cancer history. She said she would still prescribe Estrace if I wanted it, but I’m too hesitant. I would feel like I couldn’t tell my onc.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine)
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Aug 27, 2021 09:33AM Trishyla wrote:

Have your gynecologist talk to your oncologist, KBL. She's the best one to explain the current research on the use of Estrace in breast cancer patients.


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 Chemotherapy 8/5/2017 Xeloda (capecitabine)
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Aug 27, 2021 12:06PM KBL wrote:

I’m too chicken to start it back up, but my onc definitely had said no in the beginning. Thankfully, I am feeling relief from the Hyalo-Gyn. It’s the first thing that’s helped besides the Estrace. Illimae told me about it.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine)

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